A new study published in the journal "Thyroid" has reported that Hashimoto's disease affects quality of life, long before thyroid function is specifically affected. Hashimoto's is an autoimmune disease in which the thyroid gland is the target of antibodies that eventually destroy the gland and leave most sufferers hypothyroid, and unable to produce sufficient thyroid hormone. In the study, despite no differences in thyroid stimulating hormone (TSH) levels, the patients who had elevated Thyroid Peroxidase (often abbreviated as TPO) antibodies had noticeably higher incidence of chronic fatigue, dry hair, chronic irritability, chronic nervousness, a history of breast cancer and early miscarriage, and lower quality-of life.
The researchers concluded:
"Since all of our patients were euthyroid at the time of inclusion into the study, and rates of symptoms for patients who were receiving thyroid hormone supplementation were similar to those of women with anti-TPO levels higher and lower than the cut-off point, we believe that hypothyroidism is only a contributing factor to the development and the presence of these associated symptoms and diseases, as well as to the decreased quality of life in patients with HT. Women with HT suffer from a relatively high symptom load. Further research is warranted to improve or develop treatment strategies."More Information:
- Hashimoto's vs. Hypothyroidism: What's the Difference?
- Hashimoto's Thyroiditis
- Treating Hashimoto's When the TSH is Normal: Do You Need Preventive Thyroid Treatment?
Photo: clipart.com
Source: Ott, Johannes et. al., "Hashimoto's Thyroiditis Affects Symptom Load and Quality of Life Unrelated to Hypothyroidism: A Prospective Case-Control Study in Women Undergoing Thyroidectomy for Benign Goiter," Thyroid, Volume 21, Number 2, 2011 Online
Why don’t they study what causes the antibodies?
I think there is more focus on the antibodies of sister diseases of hypothyroid (lupus, RA, MS). Which is understandable as those diseases can be much more difficult to treat. Hopefully whatever we learn from those disease will help further our knowledge of hashimoto’s
My thyroid levels are normal with meds, antibodies still high, still have hair loss, fatigue, blah, blah, blah. So I’m still symptomatic. What do I do about it?
I’m in the same situation as you, Michelle: euthyroid (in fact, thanks to Synthroid my hormone levels are “perfect,” according to my endocrinologist), but still symptomatic, probably due to a very high antibody titre. My biggest problems are chronic fatigue and brain fog, but I do have the irritability going on as well. From what I understand, there isn’t anything we can do about it, yet. The only way to stop producing the anti-TPO is to have your thyroid removed, but my endo says that even then it will take years for your immune system to “forget” and stop producing the antibodies. Some studies have suggested supplementation with selenium as that will bring down antibody concentrations, but after talking with my endo and GP that practice seems somewhat contentious. I’m currently managing my fatigue and brain fog with prescription psychostimulants (Vyvanse) which works very well for a few hours each day – it allows me to be productive during those hours. I guess that’s all I can ask for, now.
I have found that by eating a very low carbohydrate diet I feel much better (Not perfect by the way, but much better) I have had to stop eating any sugar, grains or much fruit to have any symptom relief. With a large dose of Nature throid daily my numbers were normal, but still had many symptoms. Changing my diet seems to be making a difference. I hope the improvements continue. I have been doing this 6months or so now.
Dr. Datis Kharrazian, author of Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal?, recommends that avoidance of gluten since the gluten molecule mimics the TPO molecule in the body with the result that the immune system attacks its own thyroid gland. (Perhaps that is one reason Sharon (below) has found some relief on a low carbohydrate diet.) In addition, some people do better without the casein molecule found in dairy foods.
In my own case, stopping the iodine supplement was very important. Dr. K says supplementing with iodine does cause the thyroid to “work better” by increasing TPO production, BUT that in turn revs up the immune attack on the thyroid.
I have been working for 9 months with a practitioner trained by Dr. K. We have addressed virtually all areas of life and health. In addition to avoiding iodine, I also avoid immune stimulating foods such as mushrooms. I have done an extensive elimination diet and have found some (surprising) foods that cause an immune response. I take immune modulating supplements such as glutathione and SOD, and Vitamin D3.
The area of autoimmunity is a cutting edge research area. Most doctors do not have the time to follow all the research. My doc told me that there was nothing that could be done about my antibodies except wait until they and completely “killed” my thyroid, supplementing with Synthroid along the way. But I believe this is short-sighted since there are over 60 different autoimmune illnesses. AND when a person has one of these, his or her chances of getting another one greatly increases. It just makes sense to look for the cause of the immune system problems and take action. Don’t wait for your doctor to figure it out. It’s your body; take action!
We have some experience with selenium supplementation over here in Austria. From my point of view it can help patients reduce their symptom load. However, literature is controversial. That might depend on people’s natural selenium intake – for example, soil in Austria is poor in selenium, thus most people are selenium-deficient.
However, you might give it a try – no side effects of selenium 200@µg/day have been reported.
Kind regards!
Johannes Ott
I had a complete thyroidectomy in a study at UCSF 25 years ago for Hashimoto’s. I still have abnormal antibodies. Go figure. I struggle daily with chronic fatigue which is at times pretty severe. Having my thyroid removed saved my life because I was extremely sick from the Hashimoto’s, but it didn’t cure me by any stretch of the imagination.
My antibodies are very high. My endo tries to keep me a little ahead of the game by suppressing TSH. I am better on T4/T3 combination medication. You might want to look into that if not on it already.
If you are not already doing it, Michelle, you might try taking Natural Desiccated Thyroid. Synthroid only has the t4 in it which may not address all the requirements you need to improve. NDT more accurately substitutes what your body would be producing by including a similar ration of all the needed hormones. T4, T3, T2, T1 and calcitonin. Some people are able to convert T4 to T3 and will do well with meds like Synthroid (levothyroixine). But if you have lingering symptoms you might want to look into NDT. You may not be able to conniver the T4 into T3 well and/or you are one of those in need of the other thyroids hormones.
You should also have your adrenals checked with a 24 hour saliva test. That could be a problem. Also check for other issues like problems with your pituitary or any underlying infection like EBV, Lyme, mold exposure, etc. I’ve been making the switch over from synthetic T4 to NDT and am doing better.
I think my symptoms are from my medication. I am allergic to lactose and still on synthroid. I hope the doctor will not just dismiss my woes as they usually do. I want to sleep at night.
Ask your endocrinologist to try Tirosint for you. I’m allergic to gluten and casein, so my new endo recently switched me. It only contains pure T4, glycerin, water and the cap is gelatin. It seems like I am improving a bit, so I’m trying to be hopeful.
Thank you! I also have gluten issues. I am going to ask for it ASAP.
I am so happy to read that there may be further research into this! I have always wondered why there wasn’t more research into trying to block the anti thyroid antibodies. Wouldn’t it make more sense to stop the cause instead of just maintaining normal TSH levels? I hope it doesn’t take 100 years to find some new solutions!
Jenny – I asked my endo the same thing. She said there isn’t more research into this because Hashimoto’s “won’t kill you.” It’s not considered that severe, apparently. Of course, this is probably determined by people who are not living with the disease. If they were, and they understood how crappy it makes us feel, they might change their minds…
Oh, by the way: I printed out that article and took it to my endocrinologist, who hadn’t read it. She thanked me and said she’d been looking for something just like it! I also gave a copy to my GP. I suggest anyone with Hashimoto’s do the same.
I went on a gluten free diet and all of my symptoms noticeably decreased within 2 weeks!! Because hashimotos is an autoimmune difficiency I eliminated foods that maybe my body was fighting… And it has made a great difference for me.
my face is all puffed up – i feel lethargic all the time, have no energy for any kind of work, am putting on weight, i feel lost ,my TSH level is 7/8 – is it too high, am taking eltroxin 2 tabs – dont feel well at all.
Sonia – hang in there and use this site and look for other related strings to get the specific information you need. Feeling like you got hit by a bus at a TSH of 7 or 8 is certainly realistic. As you see repeated many times here – while there are a great many very good doctors who try to help – you must be a partner with the doctor and keep your own records and notes to share at every visit to try to improve yourself. Doctors are very smart people – but they aren’t you, and they are not mind readers. Best wishes and hope you feel better soon.
I have Hashimoto’s and my cholesterol and glucose are high and difficult to control. Anybody know why this is? I’ve been looking into LDN (low dose naltrexone), which I first heard of last week on this site, but understand it won’t have an impact on these. I beg to differ with Amy’s endo – high cholesterol and high glucose make your life miserable and can end up killing you.
My Dr. has me taking 4 grams of Fish Oil to lower the cholesterol. It actually worked. I was really skeptical of taking oil to lower cholesterol, but the proof is in the numbers. The high glucose isn’t a problem I have, so I don’t’ have an answer for that.
If you find a good answer let us know.
I was diagnosed at 35 with Hashimotos. I was nine when I entered puberty, and right after I always had less energy than anyone I know. My hair was always thin, and my skin has always been dry. My Mother never took me to a doctor to find out why any of this was. She assumed I was lazy, and would berate me for not being as active as other kids. I’ve had a weight problem since I was about 13. She of course jumped on the “it’s because you’re lazy” bandwagon. Even after having Mono at 15 no one connected the dots. My family doctor’s assistant noticed the goiter and told the doctor she thought something was wrong with my thyroid (Dr. Quakenbush in Los Gatos CA if you want to make an appt.). After reading Mary’s book I am convinced that I have shown signs of Hashimotos since I was nine. Dr. Q ran a full panel, and my antibodies were normal, plus my TSH was low. She has me on synthroid which works. We tried different drugs, and the synthroid worked the best for me. I consider myself lucky. Some of you have gone all over and can’t get help or the right drugs. Fortunately we have this blog to help each other.
By the way – if I take generic 112 mcg. Synthroid I have problems like it’s lactose intolerance (which I don’t have). If I take the brand, I’m fine. Go figure.
Pamala,
FYI, not all generics are made the same. I have had good luck with the generic I use, but once it was switched by the pharmacy – didn’t work at all! Just keep in mind that we all respond differently. You might be just fine on a different kind of generic, if you ever need to switch for whatever reason.
My levels were quite low, the Dr asked me to take a Vitamin D tablet. 3 months later my levels are were getting back to normal, he told me to take 2 Vitamin D tablets. I went again 4 months later and he said that my levels were back to normal and suggested i go back to 1 Vitamin D tablet and suggested “I dont think i will be seeing you again”. However, I will be seeing him again in 4 months time just to check out how i am doing. He said that many people stay/work indoors and that is sometimes the problem. He is currently doing a study of Vitamin D and thyroid, and so far he stated that he believes the 2 are linked as was shown in a number of his patients (and i was obviously one of them)
Pre-teen and teenage girls with Hashimoto’s
Pamela, that is very interesting. I came down with Hashi’s at age eleven. They did a radioactive assay on my thyroid gland and my knee to see how much uptake of the radioactive stuff I had. I was put on Armour Thyroid. Like you said, I did not have as much energy as the other kids. I got home from school at 4:30 and slept for three hours. The only time I felt rested was on weekends when I could sleep for twelve hours. I would like to hear from other people who acquired Hashi’s when they were preteen or teenage. It is probably common in preteen girls but no one talks about it. I never had an enlarged thyroid.
My mother had the same disease at the same age — twelve. The doctor put her on Armour back in 1934. My mom’s family has autoimmune diseases. Mom’s mother was an overachiever who thought everybody else was lazy. She was very bossy and domineering and had an overactive thyroid. I remember her standing over me and shaking her finger at me–She was tall and so was Mom. I’m short. Grandmother had a master’s degree and was born in 1898!
Apparently I had it when I was only ten but not diagnosed until 19! All kinds of problems which contributed to me dropping out of high school due to the panic attacks and weakness. I still have problems with sleepiness and extreme fatigue. I am currently on Levoxyl. My doctor will not put me on natural thryoid claiming that it does not have a standard amount of hormone in the pills. Auto immune disorders do run strongly in my family. I had a lot of dental work right before my thyroid went haywire, so I wonder if the mercury fillings pushed me over the edge.
Sherri, I went through many doctors that wouldn’t let me try Armour or Cytomel, but there are 2 resources you can try. You can do a search of Armour doctors online as there are a few lists of top thyroid doctors. Armourthyroid website used to have a list where you could type in your zip code (that’s how I found my old doc), but they took it down. You can also try talking to a pharmacist. My local compouding pharmacy gave me names of doctors that prescribed the drug I was looking for, which was Cytomel or sustained-release T3. I asked at Walgreens, but they didn’t have any doctors that prescribed Cytomel at the time I asked. Armour didn’t relieve my pain, and only brought my temp up a slight bit, but it helps many people with complete relief, and it’s very cheap so it’s worth a try!
Like you, as a child, I got a mouth full of amalgum mercury fillings, and have often wondered if my symptoms would go away if I could afford to have them removed. My sister has few fillings and only mild thyroid disease, while my thyroid isn’t functional without T3 meds. The dentist said that the porcelain fillings don’t last as long as amalgum, but if mercury is causing illness, it would be worth it to have them replaced!
Sherri,
that opinion by your doctor that Armour is not dosed consistently is a LIE that they still tell in medical school. Years ago, in the 1970s, I managed to shut up a Board Certified Endocrinologist who told me that Armour Thyroid did not have a consistent dosage. I said: “I read the label. It says “Biologically Assayed, United States Pharmacopoeia.” Mr. Board Certified Endocrinologist at Diagnostic Clinic in Houston shut up.
The prescribing information for Armour Thyroid says that each grain (60 milligrams) has 38 micrograms levothyroxine (T4) & 9 micrograms liothyronine (T3). A microgram is a millionth of a gram.
From the United States Pharmacopeia website:
“The United States Pharmacopeia (USP) is a non–governmental, official public standards–setting authority for prescription and over–the–counter medicines and other healthcare products manufactured or sold in the United States. USP also sets widely recognized standards for food ingredients and dietary supplements. USP sets standards for the quality, purity, strength, and consistency of these products–critical to the public health. USP’s standards are recognized and used in more than 130 countries around the globe. These standards have helped to ensure public health throughout the world for close to 200 years.”
These doctors do NOT want to give patients Armour. They say it’s “old fashioned” since it’s made from pig or sheep glands. It’s cheap. It’s a byproduct from the slaughterhouse, Armour Meats. Synthroid is expensive and only has T4 in it.
Sherri,
This is part 2 of my reply:
The company that makes Synthroid, Abbott Laboratories, was sued some years ago for falsifying research data that said that Synthroid was more effective than Armour. When all they had to treat hypothyroidism was Armour, the doctor went by the person’s symptoms, not by the almighty TSH blood test.
I have been unable to get more information on my condition because my internist refuses to do Free T3/Free T4 tests. They have also ignored my telling them about my adrenal exhaustion symptoms. Thyroid fatigue is more of physical exhaustion and serious passivity, due to lack of energy, and brain fog. When I have had adrenal exhaustion, it was a case of “I can’t face people anymore. It’s too stressful. I’m burned out on my job.”
Some years ago when my health broke due to stress, I came down with life-threatening bacterial pneumonia. When they cultured the stuff growing in my lungs it came back as “non-pathogenic bacteria” and “normal flora”. In other words, my immune system was so beaten down I was sick from normal bacteria. The respiratory techs could not understand why I was sick. That went on for about six years, off and on. My doctor had to do a bronchoscopy, to rinse out my lungs under general anesthesia, four times in six years. I would have died otherwise.
I have adrenal fatigue most often in the spring and fall, due to plants blooming and heavy pollen and mold counts, due to my allergies. My allergies make me extremely tired. They don’t want to give people prednisone because they are afraid if you take too much you will have side effects, like a puffy face. But if your immune system is weak anyway you wouldn’t be producing enough cortisol anyway. They refuse to recognize that.
Some people order Armour equivalents on the internet, such as Thyroid-S from India and Thyriod. Yes it is misspelled.
To everyone who has posted here, when were you diagnosed, and what do you think caused your Hashi’s?
I am pretty certain that I have postpartum thyroid disease, because my chronic fatigue began just after my daughter was born (she is 3.5). I initially wrote it off as being a new mom. But then I was having a lot of trouble losing the weight I had gained during pregnancy. I joined a Medical Weight Loss clinic and they measured my thyroid hormone levels – turns out my thyroid had nearly ceased functioning and I was extremely hypothyroid. I’ve been on Synthroid since and have been euthyroid for quite a while, but am still symptomatic (primarily chronic fatigue and brain fog). I’ve been tested for just about everything (even did two sleep studies!), and everything is normal except for my very high anti-TPO levels (I was officially diagnosed with Hashimoto’s this past December). After reading Dr. Ott et al.’s study, I’m pretty convinced that the high antibody concentration explains my symptoms.
I just found this blog today:
http://hopeforhashimotosdisease.blogspot.com/
Apparently this woman had a full food allergen panel done and discovered she is allergic to casein, which according to her (I haven’t looked into it yet) has a very similar structure to TPO. She cut out all dairy and her Hashimoto’s went away! She was literally able to eliminate the antibodies. Sounds promising! What do you all think?
Watch out for Celiacs as well as all food allergies! It helps . .I am struggling too and finally switched to Armour! I FELL BETTER!
Please be EXTREMELY careful when it comes to “holitstic” dentists and remivign amalgam fillings.
Generally amalgam is used for a reason – when the tooth is not strong enough to support
the traditional white filling – composite, pocelain, zirconium etc.
Attmepts to remove an amalgam fillign from an already fragile tooth and replace it with something
which is not as strong and will not last as well can resilt in anythign from a fratured root – and all
the additonal surgery that entails to needing an otherwiseunneccesary root canal suregey + an
expensive crown to maintain the tooth. Thus can mean $1200 for each tooth plus alll the trauma
involved, Wost case it could mean the need for an implant which can cose frokm $3000 to $12000
and bring their own set of problems.
I have had Hasimotos disease for about 6 years now. I have been in treatment since my diagnosis. My synthroid has been increased every 6-12-months since, I am now up to 250 mcgs and am curious does anyone know what the limit on the med increase is before they actually do something permanent to help the problem?? I mean what’s the highest dose they can put you on before the flag is waived??
Michele
I am a 48 year old women was diagnosed with hypothyroidism about 20 years ago and hyishamotto 10 years ago it is getting so bad I am in pain every day all ways swollen gaining weight don,t feel like the doc do any thing about it or under stand
Hi,
I was diagnosed with hashimoto disease when I was a teenager,I am now 44 and have suffered for most of my life.I have since had 4 operations and my thyroid has been completely removed.For years after I could not work as I was completely tired,my body ached and I was forever cold,my medication was not working and I was very cranky everyday.I felt like I was spending half my life in bed.Have since been diagnosed with ceoliac disease and have changed my meds to Eltroxin.Still feel tired most days but now have lost 3 stone,have more energy and am now looking for work.Thyroid level still not correct yet,am on 300 mcg daily and have bloods done every 6 weeks.Dont think I will ever be completely top notch but feel much better since changing my meds and going on a gluten free diet.
Had Hashimoto’s for 3 years. I’m 52. It hit when menopause did. I feel fine now. My thyroid does not work. This is what I had to do to get there.
1. Auto-immune causes inflammation. Get Vega testing. Food sensitivities inflame the body. If you don’t stop eating what causes the inflammation, drugs won’t help.
2. Be happy with what I can eat. Stress is a huge contributor to Hashimoto’s and the “poor me” mindset is what causes stress.
3. Stop taking synthroid which made me feel like an emotional wreck.
4. Find a naturopath who does blood work and prescribes. He gave me actual Thyroid with both T3 and T4. You need both to get the conversion so hormones work for you. Synthroid is like getting firewood without matches.
5. Experiment slowly with how much to take. Naturopath started me on 90mgs and I felt like I was on caffeine overdrive for weeks. That’s an indication that I swing easily from hypo to hyper. I went off all Thyroid for two months until I felt normal again. Then I started with 15 mgs. I learned to tell when I was Hypo (hives, dryness, poor sleep) and when I was Hyper (agitated, hyper alert, nervous). I added 15 mgs more and felt better.
6. Next, test my hormones. Progesterone was very low, as was estrogen. My Doc wanted to give me premarin. Horse urine!? The naturopath gave bio-identical hormones. I take progesterone-like pills in PM & bioidentical estrogen cream in AM.
7. Now I’m feeling like a human again. I sleep, which helps turn the stress down. Now I can tackle other stress habits (always running late, doing too much).
8. Strict about my diet. No gluten, no cow dairy and fruit is a problem. I read labels, say no when everyone else is saying yes.
9. I weigh less today than when I was 20 years old. 5′ 5″ and 133 pounds.
It took 5 months to get balanced again.
Mindset is everything. I expected to solve this problem. When you keep looking for what you want, you often find it.
best of luck to everyone.
I have been diagnosed with Hashimoto’s almost 3 years ago. I was living in the US where I was sent straight to an Endocrinologist to take care of me. I had to have my dosage adjusted along the way. We have since moved back to Canada and I have been seeing my GP now since September. I was never told about foods to avoid. The only thing I was ever told was to wait 60 minutes before having any supplements with calcium & iron in it. I have been trying to find out what not to eat and what I can eat so I can feel better again. Please help me with any suggestions on how to go about finding what to have and what to avoid. Thank you.
Lorraine ~ How did you find this naturopath? I have been looking but have already been duped by one office that made claims they didn’t live up to. About the only thing good they did for me was diagnose the Hashimoto’s…but then did nothing for it.
I am 34 and was diagnosed 2 years ago, when my youngest son was 2. I thought I was tired from a busy life and because I felt so unwell I went to the doctor to finally quit smoking for good. He noticed a goiter during the consultation and began testing immediately. I am fortunate that he himself suffers from thyroid dysfunction and not only recognises it when it’s in front of him, but can actually sympathise! Up to 200mcg and I am on the hypo/hyper seesaw! Finally managed menorrhagia with 1 cycle of Primolut – progestogen, and the removal of Implanon contraception.So great after a period that lasted for 10 months. The wait and see approach can be so frustrating. Because we all manifest individually, it must be hard to work out a plan of action for each of us. Emotional issues plague me presently, and I am interested to investigate the adrenal connection, mentioned in the comments. Working a physical job and managing housework as a single mum is challenging! You guys can relate I’m sure.