When Patients Won't Take Their Thyroid Medication

It is such a struggle to get thyroid medication and then you do and it doesn’t help that much and now you are seriously in debt to pay for the doctors and the tests and you still feel like c**p.
So the point is what?

Not knocking Mary S who is one of the only last voices of support.

But is it worth it or should we just make our wills and lie down and die because it just never adds up with the money and the quality of life?

(UK, horribly in debt and only somewhat better)

I am cancer survivor who had radiation on my neck 2 years ago, which caused me to be hypothyroid. Since taking Synthroid, I feel like myself again, more active but yet I’ve noticed two side effects: a headache after I take Synthroid and a bit too much energy. I gather that’s because my prescription needs to be adjusted. Rather than stop taking it, I called my doctor. She told me to take it 5 days a week and skip Saturday and Sundays.

I think it’s very important for patients not to make important decisions on their own regarding their medications. ASK, CONSULT with your doctor FIRST and FOREMOST. Don’t go cold turkey. Communication is the key. The consequences of not taking your medication is much more serious. Your doctor should know if you stopped taking your meds.

Thank you for this great forum.

I had a partial thyroidectomy to remove a benign tumor. Prior to surgery I was hyperthyroid. Post-op my levels were normal. But my surgeon wanted me to take Synthroid to suppress my thyroid, in order to prevent the tumor from re-growing. After giving it a great deal of thought, I opted not to do that. I do, however, make sure to have my levels checked regularly to make sure they are in check. While I think it is wrong to take meds to suppress a working thyroid, I wouldn’t hesitate to use them if my levels were abnormal. I know how much I suffered prior to my diagnosis and I would never want to go through that again.

If you are thinking it just isn’t worth it, I want to share my experience. It took me 2-3 years to find the right dosage of the right medication and then probably another 1-2 years before I started feeling more like my “old self”. Throughout everything I had gained a lot of weight and working out was difficult. When I finally found that I could swim without much difficulty (after getting over swimsuit-phobia) the weight finally started to come off and I really started to feel better.
Don’t give up, it can take time but it will be worth it in the end.

I have had Hashimoto’s for years, and really struggled with depression several times when my doseages got out of whack for some unknown reasons. I finally found a doc who would try me on Armour thyroid (that also has t3), and I have my life back again, after literally years of despair, depression, and fog. KEEP trying and try different options, and you will get there. Very difficult disease to manage – even when you DO take your meds – but without them, even worse. My Armour costs about $10.00 per month and even other thyroid meds are not that expensive. Also make sure you are getting the right vitamins and mminerals as that makes a huge difference. Antioxidants are the best supplement you can take for Hashimoto’s in my opinion (of 58+ years!!)

I spent 5 years feeling dizzy and sick after I stared taking my meds. Come to find out it was my doctor who was to blame. He under medicated me. I switched doctors and have been OK for the last 4 years.

I have been taking Synthroid for almost 10 years now. Starting taking it in my mid 20’s. After I met my husband and as we were getting to know one another, he would point out things that seemed not “normal”. I went to the Doc and found that I was hypothyroid. It did take several years to feel like I thought I should, but a few things I noticed right away, like my hair stop falling out, I didn’t sleep every time I was in the car (not driving) for more than 5 minutes. Also the doc warned me of high chance of miscarriages if my levels were not normal. Since we wanted to have children this was a huge motivator for me. We have 3 beautiful children and 0 miscarriages.
It just takes time to get in the habit of taking your pill. Mine is right next to the alarm clock and it is so habit now, that sometimes I have to stop and think, did I take it? Since I am not always fully awake right when it goes off. So hang in there! I think your medical expenses will be worth it in the long run!

For 13 years I was treated for every SYMPTOM, depression hair loss, weight gain exhaustion and all & not treated for my thyroid! With our last cross country move and a new HMO – I was assigned a Doctor, and she ran a few blood tests & surprise! it was my thyroid all along! Its only been a few (13)months and we are still working on getting my doses right – yet my life is somewhat better & I’m taking wayy less meds everyday. I never ever want to go back to the way it was! I know we got a ways to go – but its getting better & I’m almost me again! The meds are definately worth it!

I was diagnosed last summer (2007) with Hypothyroid. By this time, due to my extreme reluctance to visit a Doctor, I had myxodema and my face was seriously out of shape and swollen, my eyes were watering all the time and my hands and feet were swollen and I had gained 3 stone in as many months. My hair was thinning and my eyebrows faling out at the edges. Because of the pain in my joints I could barely walk without the aid of a stick and lifting my arms to wash my hair in the shower I was constantly exhausted, depressed and at a terrible low. There were many other symptoms that I shall not bore you with. But I do need to illustrate how ill you could become if you stop taking your medication.

I have been on medication since last July and am beginning to feel so much better. My face is almost normal again, my hair is growing back, most of the other unpleasant symptoms, far too numerous to mention here, have gone and I am feeling much, much better. I am at last beginning to lose the weight and I have much more energy and can even walk my dogs aghain – unthinkable this time last year.

If I had only listened to my husband when he first urged me to visit the Doctor, I would not have become so ill, and would already be feeling completely well.

I would urge you not to stop taking your medication, for you will certainly gradually become much more ill. Believe me, you do not want to become as ill as I was. I do understand that it is a real pain to be on medication for the rest of your life, but the alternative is so much worse. Feeling better does take time, and I struggled to believe my Doctor when she assurred me that I would be well. I just had to be patient. But she was right, and I am now almost completely better. Don’t give up now, Thalia. You WILL feel better in time. Trust me. I know. Good luck.

I stopeed my meds two years ago because I had a dr that changed them so many times I felt awful, I only stopped until I could see an endocrinologist and get on track again with the right meds. It was a huge mistake to stop. I am hypoT and within a month I swelled up and had incredible pain in my joints I could barely move. My number skyrocketed to 132! When I finally saw my new dr she couldn’t believe I was walking. It took 10 months for my numbers to return to normal.

Thalia, if you are in the UK, I don’t understand why you are complaining about the cost of taking thyroid medication. We have the NHS and anyone on thyroxine gets free prescriptions for life, for EVERYTHING. So where’s the expense? Once you’ve got it prescribed (which is the main difficulty), the rest is straightforward, and free.

If you’re taking meds and still not feeling better, then you probably need blood tests (free T4 and Free T3, not just TSH) to see if your dose is sufficient. If not, then an increase should help. I suffered for about 15 years on inadequate doses of Synthroid (synthetic T4) and only started feeling better after switching to natural, desiccated thyroid and MANY dose changes. I started on 90 mg/day, and am now up to 21 mg/day. My TSH is now very suppressed (common with T3-containing meds), but free T4 and T3 are up around middle of the “normal range”.
Don’t give up. You can feel so much better if you educate yourself and give yourself time to heal.

OOPS! Make that 210 mg/day! My bad!

approximately 8 years ago, i was to the point i was sick and tired of being sick and tired. I didn’t know what was wrong but assumed my blood was low. Wrong. My dr. found me to have very low throid–i was 3?? low. He told me he had never seen someone so low and still alive. Well he started me on just .5 because he said if he gave me too much it could cause a speed-up to my heart and cause a heart attack. Well i couldn’t even remember to take it often. I ended up in a hospital for a month where they told my husband if i lived through the night i might have a chance. Well i did. I was in a coma for a week with only 6% kidney function. They started me on 300 miligrams of liquid throid medicine, bump started my kidneys, my pituatary gland had stopped. I was in bad shape. But i now make sure i take my medicine. I am down to 150 miligrams but you don’t know that 1 little gland in your neck can have such a big role in your living or not. I’ll take mine. I may not like medicine taking but i like living more.

I’m sorry, but I don’t relate to someone NOT wanting to take their medication for hypo. Simply put — I die if I don’t take my medication. It’s a no brainer — I use a pill organizer and take it every morning. What’s the big deal? Perhaps their hypo is so mild they don’t need it, or some stupid doctor overprescribed medication for a slightly elevated TSH despite normal thyroid levels. I met one lady who was refusing to take her medication. She claimed she was (supposed to be) taking 200 mcg Synthroid, yet after months of NOT taking this medication her hands were quite warm (not cold like hypo) and she did not exhibit any symptoms of severe hypo — so I couldn’t help but question — why the hell was her doc prescribing her that much? I take near the same amount, yet if I STOP taking it for months I develop severe hypo symptoms. Just goes to say these idiot docs don’t know what they’re doing when it comes to dosing thyroid medication — they can’t even recognize a myxedemic person put in front of their face –that’s deplorable and speaks about how poorly educated they are on thyroid issues. My guess — they spent 5 or 10 minutes training in med school on thyroid disease? It’s pretty much a joke how ignorant these docs are.

The first thing I would suggest is if you are taking a snythetic thyroid medication and having side affects it to try the naturally occuring Armour. For many people all side affects completely disappear. It makes sense to me that your body would reject a synthetic substance and react differently than to something natural. I am an identical twin and both my sister and I are hypothyroid a year ago discovering we had THS levels of over 150. I started feeling better with two weeks of being on Armour, like many other people have reported I am so much better off and am grateful to have discovered the problem and have a remedy that is so effective.
My twins doctor was biased against the natural medication and insisted on the synthetic. She had horrible stiffness and other side effects and after several months of feeling bad (although more energetic and thinner) was able to convince her doctor to switch her to Armor and very shortly she started feeling great. Unfortunately her insurance will only cover synthetic drugs which I find outrageous. Hopefully that will change some day.
Best of luck!

I had grave’s disease 4years ago and was treated by radiation so I become hypothyriod patient. I take 100mg Thyroxine pill daily , my TSH,T3,T4 lab tests are almost near to normal but I am suffering from headach,fatigue,depression,extra weight,loss of sex drive,joint muscle pain. Is there some one have experience in dealing with such symptoms advice me wht to do? Thanks

My main thing is the amount of money for dr visits..I dont have insurance so cannot afford the medicine and visits…I have not taken the meds for 5 years and although I am sick at some times, the cost is keeping me from getting treatment…I am hypo and had a thyroidectomy to remove the right thyroid 13 years ago..

what is natural healing ARMOUR? or armor? Where is it available..I believe in alternative medicines but doctors never believe in them..where can I buy this product? thanks

After reading the symptoms of not taking your thyroid medication. I am totally confused because i have most of the symptoms and i take my medication every day. What gives?

Well, with other people saying they can’t be bothered taking their medication, then why have the test in the first place, you must have felt something was wrong to suggest to the doctor to be tested, also some people saying they don’t feel better, you have to remember it may have taken years before you were dianosed with either hyper or hypo thyroidism, it is going to take just as long to start feeling better when I was diagnosed with hypothyroidism in 2000, I did not start to feel better until 2001/2002 and it was small changes I noticed first such as having warm hands when the weather was cold and more energy as well.

So do not give up If you can not remember to take your tablet, then make a habit of taking it last thing at night just as you get into bed.

If you find you have heavy periods, you can always take the pill or have the injection to reduce or stop periods.

Hope this helps

If you are in the UK Thyroid treatment is free as it is considered life threatening and therefore essential. Get a medical exemption certificate. I have one and have for 9 years. It means any medication you have to have is also free!

I have Hashimoto’s and I faithfully take my thyroid medicine. I have seen no benefit from taking it. I still have fatigue, memory problems, low libido, low body temperature, joint problems, etc., etc. Why do I still need to take the medicine? How much worse can I feel?

To Marilyn– Armour thyroid is a medication made from dessicated (dried) pig thyroid. It is prescription in the US and must be prescribed by a doctor. Many docs will not consider it as it is an old medicine and they have been raised to treat only TSH and only with synthetic T4.

For Sam and for everyone else who are taking medication yet still having symptoms of hypothyroidism, read Dr. Kenneth Blanchard’s book “What Your Doctor May Not Tell You About Hypothyroidism” and share what you read with your doctor. (Mary Shomon wrote the forward for this book.) Dr. B is my doctor (he is in Massachusetts) and is a pioneer in thyroid treatment. Please read this book as it explains in detail why your TSH levels might be fine, you’re taking your meds as prescribed, and yet you still don’t feel well. This condition is so challenging to treat…after 3-4 years I’m still working on getting my meds right, and as many of you know, your medication needs change with the seasons, with stress, and so on. But do keep working at it…you don’t have to live with the depression, fatigue, and so on. I’ve also lost 8 lbs recently with a change in my meds after not being able to lose a pound, and steadily gaining weight, for 2 years. Don’t give up…your quality of life is at stake!

the article says you can’t help a thyroid with natural herbs. Well, I did, ten years ago. My TSH went from 17.2 to 2.4. Aren’t synthetic meds based on herbs anyway?

Renee, What natural herbs did you take? Please let me know. I would be more comfortable taking them. Thank you.

Can someone PLEASE help me. I have been on synthroid since january. The dose is now 100mcg. I have swollen hands, feet and legs. I ache all over. I am gaining weight. Suggestions???

Catherine
If you have only just started taking thyroid medication in January and are feeling these symptoms, you need to go back to your doctor and get retested. Chances are the dosage could be too low for you. It does take a while for your body to be regulated by the thyroid meds.

For me, I have been diagnosed as hypothyroid for 5 years, but probably was hypo for a lot longer due to wacky doctors. I still feel like I am on a roller coaster with my thyroid, I have my ups and my downs.I went from being hypo and taking 150mcg to being hyper and having my dose changed to 50mcg, I am now “normal” on 75 mcg. I have recently been diagnosed as having Hashimoto’s thyroiditis, and have probably been to see my doctors at least 20 times since last year alone. I have the “privilege” of the military health care system and have a wonderful primary care physician who realized right away he could not help me and referred me to a German specialist as we are living overseas. With his help I am now finally in the “normal” range but am still experiencing fatigue, general lack of energy. This comes and goes. I am not overly happy with my weight, however I have not gained anymore, I still want to lose it, and exercise and changing my eating habits has not seemed to help. Of course some of my symptoms could truly be attributed to depression as my husband has been deployed for the past 9 months and won’t be home for another 5. We do get a break in between so I guess I will see if I am feeling better in that time and I will know why!!

Julia, if you are getting the correct dose of thyroxine on the NHS for free and it makes you well then you are very lucky.
I am not so lucky and because innappropriate action by an NHS Endo also damaged my Adrenal system, which means without adrenal supplement I cannot metobolize thyroxine properly, and I no longer manage on T4 alone but need Armour, I have to travel and I have to pay. It’s that or end up on the street because I cannot work and pay my mortgage. I already have huge debts rung up thanks to the NHS because they left me to rot for years. (Many NHS GP’s do not like diagnosing young women with thyroid disease because then you get free prescriptions for the rest of your life. If they had any decency they would campain for the rules to be changed so you got free thyroxine but paid for everything else instead of witholding treatment).

Just because you are one of the lucky ones doesn’t mean everyone is. Also, you my get complications later and find yourself in the same boat. It happens.

I stopped taking my meds on February 7th this year, quit by accident. I left for a trip and in a hurry left my medication. Since I was only going to be gone over the weekend, I knew I would be okay until I go back home on that following Monday. I also knew that I would start to feel the affects of not having taken the medication. I was on .90mg of Armour, so a low dosage, down from the 2.25 I had started with 3 years earlier.

To my surprise, the first day, I woke up with more energy and clarity than I had had in years and no muscle aches. This continued the entire weekend. By the time I got home on Monday, I still felt really good and decided not to take the medication until I started to feel different.

I have to tell you, after 10 years of a combination of Synthroid and Armour, I feel better now without the medication than I have since being diagnosed.
When I went to the doctor on March 18th, he agreed that I didn’t need to take the Armour unless I started to have symptoms. I haven’t had any at all.

What changed? First, I took early retirement retirede from my job. The stress was making me worse. Then, I believe it was the chelation I had done in November of last year to rid my body of the lead and mercury. My doctor had suggested this 5 years ago and I resisted because I didn’t understand the benefits. We had done the hair analysis and blood tests, both showed the levels were elevated. I took what I thought was the best route and had all my amalgam fillings replaced. I still didn’t feel any better, just my dosage started to decrease.

Today I am only taking Colladial Minerals and Calcium -Magnesium supplement to balance out those minerals that my body is lacking.

If you are relying only on blood test, you are not going to know what other factors may be working against you. Get the hair analysis done, as well as food allergies. One other key change is elminating the stress in your life. This is one big contributing factor to healing. The body is already under stress and any outside influences will only make things worse.

To overcome the problemn with ememberign to take my meds (becuase being hypo mademe forgetful) I kept a spare packet inthe car, in work,in my briefcase, in my mothers, in . . . – I remembered eventually.
With regard to the woman who’s daughter didn;t want to take hermeds becuase she liked havign te lighter shorter periods which her unmedicated state resulted in.
There is a solution for this – its called the contraceptive pill. Yes, it ups your medication needs but its better than not taking any meds at all.
If you don’t want a pill which iups your meeication needs, the mirena IUD is the perfect solution. One of its effects is that it shortens and lightens periods to about half a day to a day. You won;’t get lighter than that without seasonale / seasonique

In the UK I was prescribed 250mg thyroxine per day (a high dose) for over 8 years. I had multiple unpleasant symptoms, the worst was frequent attacks of vomiting, and inconsistent blood test results. I was not happy with my treatment but had difficulty persuading my gp to refer me to a private doctor. He and I ended up on very bad terms, and he was very bullying and unpleasant.

Since emigrating to Canada I’ve discovered that the local NHS pathology lab was only testing my free T4, not my TSH. As a result of TSH tests in Canada I’m now off thyroxine altogether – either I’d been misdiagnosed in the first place or recovered. I’m now in good physical health, but I feel that 8 years of my life was ruined unnecessarily. I think patients in the UK should be very cautious about the treatment they receive and check their blood tests very carefully.

My thyroid was removed when I was 18 years old and Iam 45 now I took Thyroid med. for 1 year,I have not took it for 27 years now.Ever time my levels are checked they are fine.I get tried sometimes and my hands stay cold,and dry skin,but Ive beening doing fine I guess never been in the hosp. for any thing.

Synthroid works for most people, only a few have trouble with it, and need to take the MUCH older med, Armour. Low or high, thyroid disease is a major disease and not one to play around with. Taking extra vitamins and minerals (I mean beyond a daily multivitamin with minerals) is just tossing away money–what it doesn’t need in the way of vitamins and minerals is just pee’d down the toilet. The folks who SELL you those mega-doses usually don’t mention that, or try to scare you with other unproven stories or statistics.
Take your thyroid med, whichever one it is, for hypothyroidism on an empty stomach about 30 min. at least before a meal. My endocrinologist advises chewing it up with just your four front teeth, to get it into your system faster, since most people are in a rush in the morning and don’t want to wait to eat breakfast.
BTW, hyperthyroidism (high thyroid) is common in older cats, especially if you notice them drinking huge amounts, losing weight and hair–though several other diseases CAN cause the same symptoms, only a good blood test will clarify it. If it is hyperthyroidism, he or she can be on a pill, daily, the rest of his or her life, just like us humans. We’re lucky to have a pet pharmacy near us that makes tasty chewable treats out of the meds, so you’re not having to force it down the cat.
Our elderly Golden Retriever is hypothyroid, like me. He and I take our synthroid-type meds daily, just different dosages. Please, please don’t just stop, or just occasionally take, your thyroid meds. HUGE effect on body, mind, moood, etc. (From an RN).

To Susie who had her thyroid removed when she was 18. Was this a complete thyroidectomy? I was under the impression that if a person had thier entire thyroid removed & didn’t take thier meds that they would die. I had mine totally removed 2 yrs ago and I’m really depressed about having to take a pill to stay alive that I have stopped it 5 days ago. I may only be hurting myself but I’m already sick of having to deal with doctors who work from a chart on how I should feel instead of me knowing how I feel. I’m nervous about what may happen but maybe I’ll be fine like Susie. I don’t know how it’s possible but I will see what happens.

When I was 14 I was diagnosed with hashimoto’s thyroid condition and have and it for 3 years now. i dont take the regular pharmaceutical meds i have gone on more of a homeopathic approach. it is quit expensive and i am only going down this road in hopes that while i am still young that i can cure my symptoms. if i dont take my meds (which includes 12 pills in the morning and 4 pills at night) i get severely depressed and almost become suicidal. i completely just want to shut down and I get intense heart palpitation. for those of you that dont want to take your meds, i just want to say that i tried taking that approach and believe me it doesnt work. Your conditions will just get worse in eventually you will have such a damaged thyroid that there is no going back. I don’t know about you but I still have a full life and I am not willing to die for a simple gland on my body. Sure a pill is the only way to happiness but that crutch to your symptoms is the only way to make your ONE life on earth that much more enjoyable.

I was on the verge of discontinuing my medication at one point. Synthroid made my life miserable because it was so ineffective for me. I was irritable and weepy, totally lethargic with aching joints and muscles. I slept all the time because wakefulness was painful, mentally and physically.

My doctor wouldn’t change my medication, so I went to another doctor when I heard he prescribed Armour. Saying I was grossly undertreated, he started me on a dosage of Armour higher than the equivalent of Synthroid and treated me for adrenal fatigue.

I can’t describe what a difference it made. I’m still not as energetic or thin as I used to be, but in comparison to how I felt on Synthroid, this is an amazing difference.

If your medication isn’t helping, go to your doctor and ask for help. If you doctor isn’t able to help you, find another doctor. Your life depends on it!

Renee…..How did you correct your Hypothyroid condition with herbs?? I’m just curious, sounds like something I would try..

DON’T TAKE YOURSELF OFF YOUR MEDS!!!

DON’T TAKE YOURSELF OFF YOUR MEDS, no matter how bad you feel. I did and I felt worse that I ever imagined I could feel. Talk to your doc about adjusting your dose or trying Armour. If your doc won’t work with your, then it’s time to fire him and hire someone who will listen.

In 2000, I went to my doctor for a physical. I didn’t feel sick but my older sister had just been diagnosed with cancer and I thought I should get checked out. I didn’t have any hypo symptoms at that time but was going through quite a stressful time in my life (besides my sister’s cancer). The doc put me on Synthroid and have been on variants since.

I quit my quack GP doctor after 5 or so years because he rarely examined me in person, only sent me for labwork and called in a dosage based on that. In general, he was not a nice person and was very difficult to deal with.

I moved to another town and eventually went to an internist, she ended up lowering my dosage. She was much better but kept adjusting my dosage even though I felt great (no brain fog, getting stuff done) at a certain level. I finally had the last straw in January of 2008 as she was about to increase my dosage. I quit taking any meds I was on a that time.

The next month was awesome – little or no brain fog, I was able to get things done that I’d always had problems doing or remembering to do. I even had energy to do them. Then after about a month, I hit a wall – abdominal spasms, body spasms, joint aches and pains to where it even hurt my arm to brush my teeth. I was in so much pain that I can’t remember if I had problems with brain fog!

I wanted to see an endo but the wait was three months. I scheduled an appointment then went back to the internist. She put me back on synthroid at the same level I’d been at – no working up to it at all.

The endo was able to see me in May 2008. By then, I’d been reading this site and books so I knew to bring my labs in. I also started keeping a journal of what had happened since the start of 2008 so I wouldn’t forget and could share it with him.

He’s been great to work with. Once I leveled off on the dosage the internist prescribed, the endo began to lower my dosage. In December, since I was still dealing with brain fog, low energy, always being tired, I asked him about prescribing Armour. He was hesitant because of the upcoming Christmas holidays. So I waited until just after the new year in 2009 and asked him to switch me then. What a huge difference! Not as much brain fog and not as often. I actually remember that I forgot stuff. I am working hard to mend personal relationships that were severely tested while on Synthroid.

We’re now tweaking that dosage – I was at 1GR but at my appointment in March, he doubled that. I think it was too much because then I started to have eye twitches and anxiety attacks. He suggested taking my meds at a different time but when that didn’t work, I dropped myself to 1.5GR. The issues have subsided. I haven’t told him this yet, but I see him next week I will.

All that to say DON’T TAKE YOURSELF OFF YOUR MEDS, no matter how bad you feel. I felt a lot worse that I ever imagined I could feel. Talk to your doc about adjusting your dose or trying Armour. If your doc won’t work with you, then find someone who will.

Renee, if you ‘cured’ it with herbs it either wasn;’t Hashi’s or it was transient -which is very rare. Even the mosyt wayu out of alternative brigage agree that there is no alternative treatmentfor hashi’s. Medication is not based on herbs but is a synthesised version of what your body no longer produces

I have been reading the blog and I must respond. I had problems with my system for about 8 years. Finally found a doctor who discovered I had hypo and pituitary issues. Over the past 10 years I have packed on weight and had the aches and pains that everyone described. My blood work always came out good while on Lyvoxyl but the past 10 months my memory has been so bad along with crying jags, hair loss, aches, sleeplessness, etc. I decided 1 week ago to stop taking my meds and I feel WONDERFUL. No brain fog, I have lost 7 pounds and I actually am starting to feel like my old self again after all this time. I will go to my dr. next week and have blood work done but and unless my levels are way off or I start feeling bad I will not go back to taking my med. It is great to not have headaches, aches and pains and just plain feel good about everything again.

I was dxed with Hashimoto’s when I was 28. Never felt wonderful, but got me something of a life. At 38, I broke a leg and they fixed it with a plate, some screws and a drug resistant staph infection. The drugs used to cure the infection messed with my thyroid levels. With the repeated hospitalizations and surgeries for the leg, coupled with the high TSH, I got really depressed. I also had massive weight fluctuation. Eventually, things got really loopy, and I stopped making a lot of sense. Enter psychiatrists, who dxed me as bipolar, despite an increase in the size of my thyroid and my little nodule growing from .5 cm to over 2 cm in a short period of time. I wound up having a total thyroidectomy, but having to deal with psychiatrists as well. Lots of psychiatric drugs mess with thyroid levels, but most shrinks don’t bother to check or attribute much to the thyroid. Finding a good endocrinologist is almost as difficult as finding a good shrink. After 3 years of uncontrolled thyroid levels, I’ve given up.

6 months ago, I quit all psych meds, but because I had no endocrinologist, I couldn’t get my thyroid med level lowered, or even addressed. After 6 months of hyperthyroid due to excessive medication, I quit cold turkey 6 weeks ago. I slept for the first time in a long time. That was the good news. After 6 weeks, my face is really swollen, and my eyes weep a lot. I’ve gained a lot of weight – like 20 lbs. My thinking is off, my short term focus sucks, my joints really hurt and I’m moving much more slowly. Aleve is my drug of choice. Constipation has distended my stomach, and I can’t eat without nausea, but I still gain weight (hey, if you’re not eliminating anything, of course you’re gaining weight). I’ve developed some chest pain, occasional breathing problems and a lot of orthostatic hypotension. But, I get to sleep, a lot. I’m thinking in another 2-4 weeks, this whole escapade should be over, finally. If it wasn’t winter, or I had any sort of a thyroid left, it would take longer.

I just want to add, I was diagnosed 5 months ago hypo.It revealed high AB count. I made diet modifications and increased kelp consumption.It reduced my TSH down to 2.83.I had a stressful december and my levels went up to 7.43.I have a 2.33 level in january and now have started on synthroid 25mcg. The Endo wanted me to start with 75. I was reluctant due to the side effects.

In a short story, My hair is falling out,I have incessant headaches,noticeable increased depression and palps.I am taking more xanax than ever in the past 20 years.I am concerned that synthroid is over stimulating the adrenals. Many doctors and people have no clue that when anti-bodies are present, so are the horrific symptoms of BOTH Hypo and Hyper. I never responded to lithium and it seemed to only depersonalize and make me more anti-social.I stopped the lithium on my own slowly and was diagnosed as hypo 2 months later in a routine physical.Diet changes may help TSH but if you truly are low on the hormone,you require it. Tyrosine may help making the hormone but you need adequate levels to feel good.I am on synthroid 10 days now and have thought of stopping.I read this forum and it completely changed my mind.My concern is, will the synthroid eventually cause thyroid failure.I understand why everyone is reluctant to take these meds.The most scary scenario is a coma and for anyone to let themselves fall to that against the advice of taking a pill.It is really just a form of suicide and it is very selfish to the ones that care about you. You are doing a huge injustice in being reluctant with the meds. Know your body and keep a journal to compare symptoms,changes,etc.

I read that one single serving of tofu or soy milk can prevent 50% function of thyroid,.I ate soy all day and everyday for nearly 20 years as a vegetarian.That may have one my leading factors that lead me hypo. I still had the auto-immune thing going on since a teen.

Take your meds, or risk ending up in intensive care somewhere. It is a reality and that is why cytomel is available in injectable form for emergency hormone replacement.

I just also would like to personally thank Leslie for waking me up.Her advice has been the most important that I have received thus far. When you feel as lousy as I do and have for a long time, you are sometimes not open to any ideas.

Thank you again for your your help in seeing the light.

I have had hashimotos Hypothyroidism from birth. I was not diagnosed until I was 11 years old. I was the size of a 2 year old when I was in Kindergarten. I eventually started to develope a dwarf appearance. I had no appetite yet I was a very stalky child. Luckily my mental developement was never affected. My mother had tried to find out what was wrong with me for years. Finally a new pediatrition diagnosed me. I was put on Synthroid .25 mcg and I literally grew 1/4 of an inch in TWO DAYS. Painful but I was sooooo happy. I lost weight and looked like a normal child and my mind was even more vibrant. My levels were religiosly checked every month until I was an adult and out of the house. I lived a very happy healthy life with hardly any side effects. The only one i had was headaches when the levels were adjusted. Remember when you levels are changed it can take up to 6 weeks to just start feeling the effects. My mother was so faithful at having me checked. When the responsibility became mine I got lazy. I would skip doses sometimes months at a time. Sure I didn’t feel any effects because it takes a long time for the meds to leave your system. So of course I felt fine haha. But after awhile I would have horrible systems again and have to start the process ALL OVER!!!! When I became pregnant with my first child my stupid dr took me off my meds. Again the first 3 months I felt fine, but then I started to feel terrible. I would slip into sleeping fits that would last hours. NOT GOOD!! After I had my baby I slipped into a hypochondriat depression that lasted MONTHS!! I finally went back to a new dr. who put me back on meds. YES I HAD TO START ALL OVER AGAIN. I finally leveled out and I felt great. I did develope some anxiety which led to panic attacks when my levels were off. Please don’t be stupid. Your thyroid controls EVERYTHING! I mistreated myself so much with the levels, not getting them checked and just letting myself go that I recently expierenced anxiety and panic attacks so severe that it sent me in a depression so horrible that I forgot who I was. I was ruining my family and myself. Also remember when you age your body will change as will your thyroid levels. BE CONSISTANT. Since my levels have been low lately I have noticed that I get very depress-ish around ovulation time, when hormones are RAMPID!! I still need my levels checked and make sure you get a FULL THYROID PANEL! Very important, not just TSH and T4 as T3 has alot to do with your emotional state. DO NOT STOP TAKING YOUR MEDS. It will screw with you FOR YEARS! Also make sure your not Hypoglycemic cuz that can come with Hypothyroid. And Ladies if your pregnant have your children checked at birth for hypo IT CAN BE GENETIC. Taking a simple pill every morning is NOTHING compared to ruining your life and others around you. Don’t get depressed because God has blessed you with an answere to a happy healthy life.

BTW the reason you feel more energetic is because your metabolism is actually working now. Keep in mind it will level out. Your so used to not having energy that when you do have it you feel anxious. Its normal. Trust me Ive been living with it for 33 years. And Susie I really don’t understand your story cuz its physically impossible to live a healthy life without a thyroid or thyroid hormone sorry but Im a lifer with this condition. Also people we are not dr.s and its not a good idea to diagnose yourself. Everyone has different body chemistry. Getting ACCURATLY checked is the only way.

Well, I had to stop thyroid meds 3 yr ago when I lost my insurance. I could afford the meds, but not the 3 month bloodwork/dr visits. Aren’t there ANY natural ways to boost the thyroid? I had read on one site that applying idodine to skin daily would help. If there are legitimate “cures” for hypothyroid or even high cholesterol (niacin?), I would like to know. I feel my health slipping away, always so sleepy, ill, and even though I’m 46, I don’t think it’s menopausal symp -I have a 3yo -so thyroid is my biggest concern…and the way I feel is affecting my entire family. Just looking for some advice. Thanks.

I was diagnosed with Hoshimoto’s disease over 14 years ago, then shortly after with thyroid cancer. I have been on meds ever since. The doctor who originaly diagnosedme put my on synthroid, which mademe vomit daily among many other problems. When I told him this, he said it was all in my head and that I was a hypchondriac. Also, he never did any follow up treamentsor testing after I had my lobectomy. Needless to say, I never saw that doctor again, and I went without my meds for many years with no problems really, instead of being fatigued or tired, I was wired. Kinda Weird when you consider that I was hypothyridic. I finally found a doctor who was absolutely amazing, he did everything right, took my complaints about synthroid seriously, did all the follow up testing that was needed (which was a good thing as the cancer had come back), and put me on different meds. But we continued to fight the cancer battle until he finaly had me do radiation therapy, which was the cure. Then we moved out of state and I was without a doctor, again. Unfortunately, it took me a long time before I could get to a doctor again as well, I could never get my boss to let me have time off. After OVER a year without my meds, I felt miserable!I had gained a significant amount of weight, I would come home from work at 5:30 pm and immediatly go to sleep for the rest of the night and then when I was awake I couldn’t stay awake easily, I couldn’t even walk up a flight of stairs without pain andthe scariest thing of all, I was having chest pains. So I picked a docotr closeto my house and made an appointment. Boy, was I in luck, another very wonderful doctor. He actually yelled at me for not going to a doctor sooner when I had told him how long it had been since I had been to doctor and how long I had been without meds. He did my blood work right then and there, no sending me to a lab, and put a rush on the results. He said I was in bad shape, and if I had waited too much longer would have ended up in the hospital from complications to not having my meds. Dr. D, as I call him, called me the very next day AT WORK! HE told me that my TSH and FreeT4’s were throught the roof, higher than anyone he had ever seen before. The he told me the thing that scared me the most, if I had waited one more week, I would have had a MASSIVE heart attack and DIED! What a wake up call! I left work early that day and went and picked up my meds and started taking them the same day. It took around 6 months before I started to feel better, but within a week of being back on my meds there were noticable changes. The swelling in my extremities was going down, the fatige and tiredness I always felt were lessened, and I did not have chest pains constantly any longer. Dr. D saved my life! So if you think that not taking your meds for your hypothyroidism seems like a good idea, think again. It could save your life.

My wife has had surgery about 2 years ago and had her TR’s both removed. She took her meds for a while , but then quit … She won’t listen to me. Our marrige is on the fritz. How can I get her to take the pills. I am very worried about her health. She hasn’t the energy to get up and play with our 2 yr old. If it’s this bad now how bad is it gonna get. Can anybody give me some ideas

I had a partial thyroidectomy 10 years ago. I have been taking Synthroid all this time but decided recently to stop. I read that Synthroid can cause Osteoperosus. Does anyone know if that is true or just a myth? I was taking on .125 dose of Synthroid which my doctor said was a very low dosage.

NOTE: I always had a fine functioning thyroid but I had a cancerous lump on my rightside thyroid. My surgeon removed the lump and half my thyroid. They wanted me to do RAI treatments but I opted out. Radiation is not so good for humans or anyone for that matter!!

It has been three weeks since I stopped taking Synthroid and up until now I have felt great! Today I felt kind of jumpy, nervous and light headed. Is this a symptom of not taking Synthroid?

I was thinking of finding out about taking the natural thyroid pill made from a pigs thyroid. Does anyone have experience with that? If so, share your experiences.

Thanks to you all and best of health to all of us nutty people with thyroid issues!!

You can write to me directly at my eamil, iras02@comcast.net

My name is Ira. 51 year old male.

I have been taking levothyroxine since March 2010. I have took my medication every day since day one. All my aunts and cousins have thyroid disease and they gave me some good advice which was don’t expect to feel absolutely perfect anymore because how can you be when you are taking a supplement. I feel a lot better on it and couldn’t imagine life without it now.

What gets me about a lot of Dr’s is that they only deal with test results and not how you feel. I have Hashimoto Hypothyroidism and I have taken Synthroid and Levothyroxine medication which didn’t make me feel any better. My test results are normal but I still suffer from depression, nausea, body aches and extreme fatigue. I convinced my Dr. to put me on Armour. I am taking 75 mg, but I still don’t feel any better. My Dr. and other Dr.’s that I have been to said that since I am not feeling any better and my test results are normal, my symptoms are probably due to depression and that I should start taking anti depressants also. Well I have been on many different anti-depressants and nothing has changed. I am at my wits end and I don’t know what to do next. This is the most frustrating thing that I have ever dealt with.

Yeah i been on thyroid pills for about 27 years with hypothyroidism or Hashimtios if i am spelling that right had adjustments through the years it runs in my family i was hospitalised in dec 2010 for a collapsed lung thank the lord i am doing good stop smoking my thyroid levels shot up had to have my dosage for .175 to
125 stop taking prempro my thyroid dr told me to come off my meds for 3 days to a week to help my thyroditis to settle dowm to feel hyper is strange as i was hypo and borderline when i started 27 years ago i pray when i start my meds in another day it helps to settle my thyroid back and i go for more blood work in 3 week gonna do estrogen and all levels too they said since i quit smoking my meds work good now oxygen to the body thanks

Thyroidism is confusing! I have been diagnosed with hyperthyroidism, Graves Disease. I jave a one year old daughter, apparently they say I might have become hypo then hyper, with Graves due to my pregnancy. But I went because I felt hypo when she was about 9 mos old. I felt like crapola. I didnt lose weight, I didnt have energy, I didnt have anything but heart palpitations. I could barely climb stairs. My hair was coming out, and I couldnt sleep, but I have carpal tunnel and edema….so….I didnt think it was related to the thyroid. To be honest, I thought I was HYPO because my mother and sisters are. I never lost the 50 I gained while pregnant, I lost 15 then gained it back. Now after being on meds for hyper I cant lose a single pound, I gained 5 this month alone. I have no energy at all. But I was tested the other day and for the first time my levels are in normal range. Yay! I guess the meds are helping with that. But I feel like poopy doop all day long, I rarely feel motivated and am EXTREMELY tempted to stop taking them. I just want the thyroid to fix itself (which happens sometimes after a pregnancy) so I can eventually have another baby. So I am not going to. But I feel just as bad and achy as I did before starting the medicine. I just really feel I need the beta blocker. Anyone else feel this way?

I have just, today, been diagnosed with Graves disease. Hyperactive thyroid. The Dr. wants to run more tests to be sure… he also seemed to think I am in a bad spot. OK- so my numbers are bad– my heartrate has been hovering around 115 for two weeks that I know of. This actually started with a trip to the ER thinking there was a cardiac issue.
I have been tested MANY times over the years, and don’t understand why the diagnosis is now. I have been complaining (alright, commenting) about not having hair grow on my legs for the last six years. With that, the rapid hair loss from my head and fatigue. I have been diagnosed with anxiety disorder and had a hysterectomy due to the extreme pain and bleeding. I have had double for four years. I have been tested for Lupus and other related autoimmune diseases. The last set of tests were done Dec. 2009. Nothing extraordinary was noticed. I do not understand that.
Anyway– and the purpose for sharing so much infromation- My new Dr. wants to verify the diagnosis (I am showing signs of Graves opthamology & a goiter). He also wants to use radioactive iodine. I am not game. I don’t understand the need to kill my entire thyroid and then supplement my body with thyroid hormone. Can they remove just part of it, and it go back to a more normal level? Can they use a lesser dose of radiation to kill only part of the thyroid? Will I still have to take meds everyday? I just want my life back. So many questions. Can anyone shed some light on what I should do? What my choises may be?

I have Hashimoto’s and have been taking meds for years, mostly Armour, now Nature-throid with some extra Levothyroxine. I’ve never felt better, no matter what doctor I saw and what dosage I’ve taken. My symptoms have never improved but I keep taking my meds. Why? For 4 months, CVS gave me the wrong dosage even though the prescription was transmitted via Blackberry, not handwritten. My TSH went to 75. If I thought I’d never felt any better on the correct dosage, that wrong dosage totally sidelined me. I could barely get out of bed and when I did, it wasn’t long before I had to go back. That was pure hell.

I have Hoshimotos too – have been on synthroid for 10 yrs or more – now 46 – i didn’t mind taking one pill a day – but now take 3 – after they added cytomel – recent hyst caused hormones to kind of be haywire… it is a drag – but i’m going to stick w/it until we get it worked out…

My hairdresser was the one who noticed first – she said your hair is falling out at the root… and it only got worse – joint pain excruciating – but when i finally went to doc it was for depression – really serious… i would recommend taking your meds -

I have had Hoshimotos disease for 24 years. I always feel like crap. I gained a lot of weight and its still there. I have all the symptoms you have when you don’t take it. It took years for them to get my dosage right and then every time I change doctors they lower it. I don’t think blood tests work, I really don’t. I have awful hair loss and my eyes weep all the time. The eye doctor says I have dry eyes and its because of my thyroid. I am so light sensitive I can barely go outside. I am really just at a loss. I am 62 years old and I just don’t know what to do.

I was born with a thyroid condition. My parents were brilliant at getting my Thyroxine down me each day and at getting my blood work done. When I was 14 I went to stay with a friend and I was jealous of her not needing to take a pill like me so I decided I didn’t want to take it anymore. This went on for about 3 months then my work at school started to suffer, I didn’t want to do anything I felt so bad. I then went to the doctor with my parents and he asked them to leave the room after he had asked me in front of them if I was taking it. When they left the room he said straight out ‘If you don’t take your pills you will DIE’. Well that was it for me, my parents were angry at first but I have never forgotten it since and that was 15 years ago now. I kept thinking that it has never affected me badly I grew to a good height 5′7, had healthy hair, skin, a good figure. Now I have 4 beautiful children, have a good job, a supportive and loving family and if I hadn’t been taking that pill I wouldn’t be here now to tell this story so thank you to the doctor that gave me that brilliant pep talk. So don’t forget your pill and never stop it as thyroid disease can’t be cured.

I have graves and I took my meds for about a year and sure they say they could tell in my blood work but the diarrhea never stopped and I told the doctor all the time about, my diarrhea is so bad that I can only eat at home and still you dont always have to eat it just comes on that fast at work and you cant always make it to the rest room, do they know how that makes people feel. I am stuck with bad credit and thats with insurance and it still did not help me the way I wanted it to.

Im hypothyroid and hypopituitary. I was diagnosed at 13 I believe. I was put on synthroid and eventually armour. Also put myself on paxil. I broke my collar bone and was unable to work, so had to quit not being able to afford medications. I weened myself off of them for a few weeks. It is now 5 mos. And I’ve lost almost 40lbs. Feel alot better about myself and don’t recognize any of the hypo side effects. I know I should go back to my endoc. But I still haven’t the money for labs and a visit.

Aug. 18th, 2011, My wife was diagnosed with Hashimotos Encephalitis about ten years ago. The Drs put her on Prednisone which has helped suppress the illness to a point and then on .50 mcg of Thyroxine and the Thyroxine has not helped at all but she is still on it today. This disease which I noticed many of you have, in the beginning was so disabling that my wife at age 47 was just like a baby, I had to do everything for her including everything from bathing to feeding her. The Drs thought she had mad cow disease. Thank God they were wrong! This lasted about a year then she started slowly improving to about 65%. Initially she spent 18 days in a Knoxville Hosp. but every test was negative. We then flew her to Stanford Hosp. in Ca. for weeks where she was diagnosed with rare Hashimotos Encephalopathy.
I came across this stuff called Silver Sol which is like a natural Powerful antibiotic and did some research and it supposed to kill bacteria and viruses in your body. Our thyroids that have gone haywire may be from a virus or bacteria that this Silver Sol may cure. Its not expensive, 30 bucks a botttle or so. I just got mine today. Will see how this stuff works. This will be great if this cures our Thyroid problems. Check it out! silversol.com

I cannot express enough get a MICROBOLOGY LAB STOOL TEST KIT, THEY ARE OFFERED AT GDX.NET BEST THING U CAN DO FOR YOU TO SEE IF SOMETHING ELSE IS GOING ON. WE DID THE TEST CHRISSY

I was diagnosed with the same thing and the medicine that I got prescribed was supposed to make me lose weight, stop losing hair, and have more energy, well it didn’t work. As a matter of fact, It did the opposite. I started to lose hair more frequently, I had NO energy or desire to do anything, on top of all of it, it made me GAIN weight. No matter what I did, or didn’t do, I was still packing the pounds. Seeing all of this go on with myself, I started to become depressed and isolate myself because of these effects. The medicine was supposed to make me better. Not worse. So I stopped taking the pills. And I’m less moody/irritable, yes I’m cold a lot more of the time, but if that’s the only negative side effect, I can handle it.

I also have Hashimotos Encephalopathy and am on so many meds that the side effects are killing me.

Can the person who mentioned Silver Sol let me know if they saw any benefits from that ?

Thank you.

I have a hypothyroid my doctor prescribed Synthroid 25 mcg. for me. It was awful, after being on it 3 weeks my legs swelled up and I could barely walk. I quit taking the medicine and went back to the doctor he has no prescriped Levothroxine 25 mcg. Is it the same as Synthroid. I am very afraid to take it .

I hv fibramyalgia & now aparently thyroidism; my whtevr levels wer 8.5 which the dr said wer outsid norml range. He put me on synthroid 75mcg whch I dont notic any symptomatic difrnces @ all (cept decresd apetite); I didnt notic any unusul sympts prior 2 my dx (cept @ 1 pt jus prir 2 my Dx, wife said I was getin more irratbl, but nt anymor). Ive takn it 4 ovr 6 mths now n stopd a mnth ago bcuz loss of appetite. I’ve alwys ben skiny(135pds @ 6 ft tall). The synthroid supresed wat appetite I hd n I DONT need 2 b any thinner. I do hav night sweats @ x’s (on synthroid/or off it) & noticd som “brain fog”but thas it. I dont no why I shud b takin this med whn I felt fine b4 & I “think” I still do, but my dr keps encouraging me 2 stay on it, I asked him why? I hv noticd decreasd desir 2 b around people but I live & work in highly interactive job. who wodnt wnt alon x aftr helping others all day everyday. Anywy, ben loking 4 info on “wut hapns if I dont tk my synthroid” & find mostly case specific stories & general medicl sympts but nothin tht realy adreses “my” isue. Can any1 help me find out if Im jackin myslf up wors if I dont tk my synthroid? its all so new 2 me. always ben healthy all these yrs then hit 40 (now 42) & its all going to !@#$ in a hand basket. I do feel a hint of depresion but have 4 kids b/w 17 & 1 1/2, 2 businesss & awake 16+ hrs per day doin stuf, it gets a lil stresful 2 say th least. always felin draind & mor tired thn usual yet hv ben adhd as long as I cn remembr but sympts hv reducd 2 basicaly ADD(rapid thoughts) w/ much less physical hyper. just asumed tht cam w/age. any advice, help,etc., wud b greatly apreciated. I hate 2 sound lik my isue is no big deal compard 2 the stories Iv ben readin here, but its importnt 2 me 2 find answers quickly so I dont mk life worseor Lord forbid shortr thn it should b.

I was diagnosed with Graves when I was 19. Based on symptoms, I had been hyperthyroid for several years. A few years later my thyroid was destroyed via RAI (a dose that was high enough to destroy the thyroid completely as the doctors did not want it to grow back). I was not on medication for the first 6 months after RAI, and could barely walk by the time I was finally put on Synthroid and had gained 30 pounds (from 125-155, 20 of which I have since lost). I did not respond well to it, and was switched to another levothyroxine medication, which was better for me (less negative reaction), but had to be regularly monitored and adjusted. After living HALF of my life like that (medication yo-yo), I requested Armour. My doc, an endo who had never used it, agreed because he has seen the years of work to control my non-existent thyroid enough so that I felt some semblance of humanity.

My labs supported that my body was no longer converting T4 to T3. This had caused a situation wherein my levothyroxine dose was being continually raised but I was feeling hypo still. It was an awful cycle with ever worsening symptoms. I feel better on the Armour, but we are still adjusting doses (at one point, my TSH hit 36, meds were raised and TSH lowered to 3 after 6 weeks, and meds were raised again) – much of this is because, when you switch to a T4/T3 med like Armour, the starting dose must be low raised in small increments over weeks/months, so it can take a while to get to a good place.

I tell you all this to say… You are your own best advocate. I have a good doctor, but I do not hesitate to call with symptoms (I used to wait 6 months until my next appointment). I ask for more extensive labs if I think something is wrong. And I am aware I feel better with a TSH at or below 1, so I verbalize that to my doc. And, finally, after years of treatment – sometimes you do still need med adjustments so, if your body is sending you signals that something is wrong, listen.

I been on levothyroxin , for 4 yrs now I feel like a walking Ice Box ,Hands and feet are always ice cold and i get itche and have heart palpitation all the time . Depressed all the time , can’t sleep at nights gee I feel like a reck!