Saundra Renz wrote to me to share this wonderful letter she has written, and wanted to share with her fellow thyroid patients! I'm excerpting part of it here:
I am fed up! I am so tired of fighting with the doctors, fighting with the medical journals, and fighting for my right to feel well again. I am simply FED UP!! It is time for change.
So how do we change things? What do we need to do in order to bring about change in the
endocrinology community? And most importantly, how can we feel well again?
I wish this answer could be as simple.
The first thing I want every hypothyroid patient to know and
understand is that this is going to be a
fight. If you truly want to feel well again, you may have to really
fight to get there. I know how hard
it is, especially when you don't have the energy to do your every
day tasks, or on some days, the
energy to even get out of bed. But please don't give up. Don't
expect the doctor to do all the work
for you, while you sit back and take a simple little pill every
morning. Some may be lucky enough
for that to work for them, but the vast majority is not. Empower
yourself.
Don't accept the fact that you SHOULD feel good, according to your
labs, if you don't. Research
your disease. Understand it. Fight it. Ask yourself if you are doing
everything within YOUR power
to feel well again. Most importantly, don't give up. Don't let someone tell
you that you are fine when you
are not. Don't let them give you diagnosis after diagnosis, and drug
after drug, only to find out
none of them work. Be your own advocate. Start taking control of
your life, and your health.
Develop some ABC's to your care and your life. I will list mine
here:
A- Advocate for yourself. No one else knows your body better than
you, so don't let them tell you
they do.
B- Believe you can and will get better.
C. Control what you put in to your body, and what you put out into
the universe. Positive energy
out brings positive energy in.
D. Develop a plan. Start at square one, and go from there.
E. Ensure you know what you are talking about when you go to the
doctor by learning about the
thyroid and how it works.
F. Familiarize yourself with your body. Know when something isn't
right within you.
G. Get rest. The body needs adequate rest as much as it needs proper
nutrition in order to heal.
H. Help the doctor understand what you are going through by listing
symptoms and keeping track
of when those symptoms occur.
I. Individualize. Remember the thyroid is very individualized. What
works for one, may not work for
another.
J. Justify your bad feelings. They are there for a reason. Your body
is telling you something isn't
right.
K. Knowledge is power. Learn all you can.
L. Lean on others for support. You can't do this alone, and you will
need a very strong support
network. Look for it anywhere it can bring positive energy into your
life.
M. Make time for you. You are the most important person in your
life, and it is time to put yourself
first for a change. You are never going to get better if you
continue to put yourself on the back
burner.
N. Natural is always best. Best in food, best in everything. Bring
as much natural in to your life as
you possibly can. I know first hand how much of a difference this
makes.
O. Open yourself up to change. Things obviously aren't working right
for you now. You may need
to change doctors, change doses, change eating habits, change your
whole lifestyle.
P. Persistence pays off. Those that give up will never know how good
they could live, and how
good they could feel. Don't accept someone else telling you how you
feel.
Q. Question the answers and the results. If the doctor is telling
you that you are good, question
why you don't feel good.
R. Request lab reports. You need to know where your levels are at
all times in order to pinpoint
where they are when you finally do feel good.
S. Stabilize. Once you find your perfect set point, do everything
you can to stabilize it by keeping
stress low, and positive energy high.
T. Trust no one but yourself. Accept guidance from those educated in
the thyroid, but don't trust
they will now how you feel, or where you should be. Only you can
know that.
U. Understand this is a process, and probably won't happen
overnight. You are going to have to
fight for it. Remember anything worth fighting for is worth
having.
V. Voice your opinions and expectations. Doctors can't know where
you need to be if they don't
know how you feel.
W. Work at it. Most of the time, one little pill, and one dose isn't
going to get you where you need
to be. IT takes time, patience and hard work. Don't ever give up!
X. x-hale. Sigh, and exhale. It will come in time.
Y. YOU. YOU. YOU. You are in control. You make the decisions. You
are the one that will live with
the consequences, so never lose sight of YOU.
Z. Zen and balance are what you strive to achieve. Don't EVER give
up until you are at a place
that you feel well. You will get there, I promise. Just don't ever
give up.
I am asking for all you us thyroid patients to come together. We are
never going to see change
unless we stand united. We need to stand up for our rights and our
beliefs. Those that are as
simple as feeling well again, and those that are as complex as
demanding to be treated
individually; Especially if that which works for the masses doesn't
work for you. WE don't need to
suffer alone. We don't need to suffer at all. Empower yourself and
you will empower the world;
The world of thyroid patients and hypothyroidism. IT is so much more
than a few extra pounds. IT
is our life, and our well being. Isn't that worth fighting for?
I am not a doctor. I am simply a Graves Disease survivor living with
hypothyroidism. I am tired and
fed up! I am going to make the change we see in the world; One step,
one day, one person at a
time. All I ask is for you to join me. We don't have to suffer
alone. We don't have to suffer at all. It
is high time we put an end to it. "United we stand, and we shall not
fail."
-- Saundra Renz
Photos: clipart.com
I don’t agree with the fact that if you have Thyroid disease you should have to be prepared to fight to get better. Why should we have to fight ??? If you get diagnosed with Cancer, Heart disease, or any other illness, do you have to fight to get treated ???? Why is Thyroid disease different. I feel bad enough every day having an underactive Thyroid, so i really shouldn’t have to beg for help when i go see a doctor. Not to mention having to spend hundreds of dollars going from doctor to doctor trying to find one that will listen to you. That wouldn’t happen if you had cancer. Most doctors are very ignorant when it comes to Thyroid disease, and they need to wake up and realize that it affects your quality of life for years when it isn’t properly treated. When paying $400.00 to see an endo, you shouldn’t have to fight to be helped or listened to. Nobody, no matter what is wrong with them, should have to put up a fight to get better, especially with the high prices that the doctors charge !!!!!!!!!!!!!
No, we shouldn’t have to fight to get well, I agree. We also shouldn’t have starving children, homeless men and women, and unsupported military troops, but we do. This is, unfortunately, the reality of it.That was why I was asking for us to stand united, and for our voices to be heard. The reality is, you are going to have to fight. So you have two choices: stand up and fight, or lay down and give up. I chose to fight, and I am so glad that I did. Today, I am 99% better. I’ll probably never get that other 1% back, but I’ll take it!! I’ve learned to live life to its fullest, every day. It was worth every ounce of energy I used to get here. Good luck!
It is unfortunate that this is the case, but ignorance of the medical establishment and ‘one size fits all’ treatment are exactly the reasons we have to keep fighting. When someone has cancer or heart disease, doctors try different approaches and cutting edge treatments until something works, not just ‘here take this pill and come back in a year for one blood test’. No, we shouldn’t have to fight, but we do have to until things change.
So true, Saundra. I´m fighting for myself and helping my sisters to fight the good fight too.
There will be an end to this madness. Eventually.
Count me in…….that is one of the most well written,truly empowering articles that I have read. I fight for my health even when I don’t feel like doing ANYTHING because, although it’s been years, every now and then I get a glimpse of what it used to be. I remember.
And no, we shouldn’t HAVE to fight for it, but with this disease at this time, we do. Maybe when we do, it will also help others at some point and time.
mY sister also when through the same fight, was on thyroid medications for 12 years before doctors acually did the right test and found out she had hoshimotos.. it’s a thyroid disorder when she was younger where thyroid attacked it self and so now she has to be on thyroid medication the rest of her life. SHe also has hypothyroidism. The right test to ask your doctors to preform, are to test the T3 free, T4 free, TSH, ans TPO! The TPO will allow you to see if you have hoshimotoes. I found this info on this website and a doctor who helped my sister: http://www.bodylogicmd.com/for-women/thyroid-health
Medco has settled many lawsuits in the past and this should be another one that they settle. They have unfortunately got people who are on the state boards and therefore it is hard to fight them but why have they settled out of court?
I completely agree that we should not have to fight to get results. Often the tests done do not yield any information leading to quality of life changes. I have been living with hypothyroidism since age 15 (diagnosed), and have dealt with most of the commonly known characteristics of the condition. I have often wondered why the thyroid patient community does not have its own fund-raising marathon or walk for life. It may not always be a matter of life and death like cancer, but it affects us and our families. I say we need to organize, get a nationally or internationally recognized logo, and fight for raising money for research and treatment. Let’s get well!! How many people are out there who don’t even know they have a thyroid condition?? Do they realize how it affects all the body processes??? Let’s make this a movement or a cause to fight for!!
At some point acceptance has to come into the picture. Your life may never return to what it was before the diagnosis. And unfortunately as we age other medical problems may arise so that you may have a number of health issues going on at the same time and it can get pretty complicated. As patients we can’t control everything. I am on thyroid medication but I still have many symptoms. My doctor tells me that my thyroid levels are within normal ranges. Diagnosis can also take some time. I complained about my symptoms and I got treatment for the indivdual issues before the whole picture became apparent. Then I was told that I probably had hypothyroidism for about 2 years before the clinical levels confirmed my condition. I have learned to adapt my lifestyle to minimize my discomfort. It is daily effort. Some days are good, some not so good. But I keep on. Best wishes.
So many problems with getting your thyroid and/or thyroid hormone replacement therapy diagnosed properly. Finding a great endocrinologist is key, as is a great local pharmacy. It should be able to compound – that separates it from the national chains for the most part. Then, determine if you need T3 and T4, as some do (like me) to survive. Whatever your poison (pardon the pun), you need to keep trying until you feel better.
The first attempt by most docs will be Synthroid. Then, they may add thyroid extract to it. Then, you may drop two for one and try Armour. If that doesn’t work, then try the generics via RLC (Nature-throid and Westhroid). Most of this info is open source on the web.
As for MEDCO, if anyone plans on legal class action, please announce nationally as they have to be stopped. I could not get them to fill a prescription for Nature-throid, before RLC started its backlog. Plenty of lies and delays. I do not want to get into particulars, as they may pursue action on defamation, but you have to be wary of these pharmaceutical supply houses. They are profit-motivated, not patient-motivated.
As for the conspiracy theorists out there who believe companies like MEDCO are sending warnings to pharmacists and doctors to steer them to higher profit margins, or that unscrupulous drug-sales folks are doing it, seems possible. Guess the courts may have to provide the final answer. Let’s hope there are clever attorneys out there who see an opportunity to nip this stuff NOW.
What we have to remember is that the medical system’s inability to promptly diagnose and treat thyroid problems, is a symptom of a much larger problem. For instance, the average M.D. never diagnoses celiac disease. We have a huge problem with chronic disease in America that isn’t getting better! This is why I don’t see how “health reform” can work, when a large fraction of M.D.s have bad attitudes, along with poor diagnosis and treatment skills.
I agree with Debra , 100%
Get all your tests and figure it out soon people, cuz if Obama care is passed, you will never be treated adequately–particularly because the docs think one little pill is the answer…
I had my run-in with my Dr’s office about the shortage of Armour Thyroid months ago. I ended up having to do the legwork myself, after the advice nurse claimed that Medco had said the drug was discontinued indefinitely. They took the liberty of filling a prescription of Synthroid for me. I took it and 3 months later, I was back where I had been BEFORE being diagnosed with hypothyroidism with all of my symptoms…ever-increasing fatigue, leg cramps and muscle aches… I called the advice nurse, and told her that I wanted her to be on standby while I called a local Target to see if they had Armour in stock. They did, of course, and I expressed how upsetting it was that they couldn’t have figured that out on their own. It’s terribly sad to find that you can’t even trust your doctor to do the right thing. He should have paid ME for the time I spent correcting the problem. People, NEVER EVER second-guess yourself! Now that Armour has been reformulated, the symptoms are coming back AGAIN. I am now seeking out a Dr. I will probably have to pay out of pocket to get treated, yet Im paying for my health insurance as well. Very frustrating, but we all must stay the course. I would be happy, as a graphic artist, to design a logo for us all. Should anyone be interested, please email your ideas to ashtonbeth@hotmail.com We need to stand united!
I’m all for pep talks and positive thinking, but Saundra Renz’s letter was rather frustrating to those of us who already do the things she suggests. Her advice, though positive, failed to address the shortage of desiccated thyroid. Just telling us to come together, to stand united and empower ourselves is too vague to accomplish what lies ahead of us. We need to write, phone, whatever it takes, TV and radio stations, Congresspersons, Senators and alert and inform our doctors. It shouldn’t be the case, but sad to say, we do have to fight for this!
This is an awsome article!!! I am new to thyroid disease since april 2009 but this article is all that i believe and this is all i started with and i am hoping for the best outcome possible. Why wouldnt I ????
Alot of these comments are a bunch of debbie downers. It makes me sad. I Hope u will all feel better soon.
I will continue to have thyroid disease and feel the best that i possibly can, because i have empowered myself with knowledge and hope and faith.
Another thought…. Why dont we all learn as much as possible and become Thyroid Dr’s? Not endocronologists but Thyroid Dr’s who know what patients are going through.
We have to e-mail the FDA and demand that they reinstate our natural thyroid medication. Specifically, Armour and Naturethyroid. To date these meds are not being manufactured. Personally, I cannot function without this medication. If you send your e-mail to office@healthfreedom.net, your message will be delivered to the FDA. Yes, we have to fight to keep our natural thyroid medication from being taken off the market.
Remember you can also get your natural thyroid medication filled through a Canadian Pharmacy. Desiccated meds in Canada are called simply “Thyroid”. Made by ERFA Drugs. Screw the FDA for taking Armour and NatureThyroid off the market.
Thanks June (#15) & Haus (#16) for the great suggestions. I have been stockpiling my Armour tablets ever since starting on them by refilling my Rx at the earliest possible date….I always felt kinda paranoid for doing that – Who’d thought we would really find ourselves in this predicament? Regarding Saundra Renz’s article – “Y – You, You, You are in Control” Sadly,
NOT!
Yes you do have to fight. If I hadn’t fought about my daily uterine bleeding (for a year!) I never would have gotten the D & C to diagnose my precancer state – and a month later a total hysterectomy.
Since I was 11 my general practitioner was always baffled why I did NOT test positive for hypothyroidism.
I was considered borderine at 33 – again – no one tested extensively for it. I had a ovarian cyst rupture and THAT was misdiagnosed – the rupture happened in March – the diagnosis in August by a dif doc. Polycystic ovaries she said….
What became of all of this is now at age 56 I have doc that cares. She now has to treat me for my thyroid, glucose imbalance, joint pain and weight reduction. I have been on her diet and meds one week and have already lost 5 pounds – and my energy is improving. You do have to fight – I could have been doing chemo instead of what I’m doing now, Realistically I should have had treatment ages ago. At least now my quality of life with improve and I will be taken off the energy rollercoaster. I know I will have to be patient – but I felt vindicated once the doc told me – No you are not crazy. You have a problem – in fact more than one because of the thyroid not running efficiently. Stand up for yourself to get the results you want.
Debra, I hear you but here if we are diagnosed with anythin else and innthe public system, yeah we have to fight to get treated,
One ‘W’ I woukd add, is Water, increasin my water intake has greatly helped. one ‘A’ I would add is to Avoid Aspartame and Soya. Even my doctor agrees ith me on the latter. Natural is best for most peope but there comes a time when you must have ecourse to science and medicine in order to get beter, My nature-given thyroid (the one I was born with) has let me down and there is a reason why scientific medicine has evolved with us to be there.
J, the reason many of us don;t become thyroud docors is that we do not have the time, money or resourcs to re-train for 7 – 10 yearsa and qualify in meidcal school, without this we could not legally call outselves doctor or practise any type of medicine.
CJ, I am so sorry to hear of your medical problems. The Dr., who did not pick up on your uterine problems via cervical smear test, should definitely have an action taken against them. That is neglect, oincompetence and medical mismanagement.
CJ, who is your dr.?