(This post has been updated to the current date and time. Enjoy!)
When STTM first put out its shingle in December of 2005, my goal with this site was simple: to educate thyroid patients based on the experience and wisdom of thyroid patients worldwide. Since then and today, STTM has always been the Mothership of those experiences and wisdom from which all other sites borrow their information. lol.
And as I saw it, by educating patients on what we had been learning, patients could in turn, take that information into their doctors offices and push for change.
And it’s been working, slowly. We now have more doctors than ever before who know about desiccated thyroid and some are willing to prescribe it. Or even adding T3 to T4. Or being on T3 alone. STTM has a page on how to try finding one of those good docs.
But as I wrote about this fact in my previous post, certain patients report feeling frustrated, angry and sick because of doctors. Progress is slow.
I am lucky, as I’ve always managed to have an open-minded doctor to work with, without complicated issues. But a lot of patients aren’t as lucky. They either can’t find a doctor to treat them correctly after trying repeatedly, or they simply can’t afford to keep driving to find a good doc (with no promises that they will get the good doc they desperately need anyway).
As a result, many thyroid patients report being forced to self-treat.
Even though STTM was never created as a self-treatment site, I am aware that some patients use it that way. And I can never condemn or criticize them. If a patient’s doctor refuses to connect the dots, refuses to understand the importance of T3 in one’s treatment…or if a patient can’t afford one who will prescribe correctly, it’s understandable In fact, I will not support other advocates who criticize patients who feel forced to self-treat, as I remember one in particular has done repeatedly. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low iron or a cortisol problem. But it’s a choice they seem to make out of desperation.
The following post is by a Guest Blog poster and UK’s thyroid patient advocate Sheila Turner of TPA UK. These are her courageous thoughts concerning self-treatment, and her angst against anyone who tells patients not to do so. Overall, UK patients have a very tough situation in the UK with doctors, but so do the vast majority of patients around the world, as well as US patients. See what you think…
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It’s not uncommon to be told as a suffering and debilitated thyroid patient to never self-diagnose, never self-treat, never self-monitor.
And in an ideal world, we could take those admonitions on. But we are not living in an ideal world.
You might as well tell everybody with ill health to put up with whatever they are suffering and leave their health in the safe hands of our ‘wonderful’ doctors whom we can trust implicitly. Sadly, many doctors have little (or no) education in the workings of the thyroid system.
Or, you might just try touring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before finding such a good doctor – indeed, IF you ever find such a doctor.
I run a very successful Internet Thyroid Support group, plus web site for thyroid disease, and I have seen at first hand (and experienced it myself) the nightmare of having to put up with the terrible suffering caused by Doctors.
In the UK, for example, it is organizations such as the Royal College of Physicians and the British Thyroid Association who have terrified NHS doctors so much that they now no longer prescribe any T3 hormone containing products, neither natural nor synthetic, for fear of being reported to the GMC regulatory body with the threat of losing their career and livelihood.
One comment I hear from those who condemn self-treatment is the problem of over-medicating. In reality, it is the reckless prohibition of all T3-containing drugs that causes cardiac arrhythmia and risk of sudden death – which would amount to at least manslaughter, and might even constitute murder if the outcome is strictly foreseeable – which it is. It is NOT patients who should be criticized. They have been driven to buying prescription medicines for thyroid and adrenal insufficiency. Criticizing self-treatment is an outrageous claim and one that the medical regulators would no doubt be delighted to hear. Seems that not only are doctors becoming sorely afraid of the Regulators, those who condemn self-treatment are also falling into the same trap.
The “basic premise” that underlies my own purpose and advocacy is to help those being left to suffer because the medical regulators and government are refusing to give a proper diagnosis – and for those who do get a diagnosis, giving them levothyroxine sodium-only as a thyroid hormone replacement.
Whenever a new member comes to TPA, we encourage them to read, read and read again and to look at the information in our FILES section which is there for all to see. We tell them about the associated conditions that go along with being hypothyroid such as low adrenal reserve, systemic candidiasis, mercury poisoning and ask them to request blood tests from their doctor to see if their levels are low in the reference range for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. We have information on the reasons they need to check these and if any of these are a problem, make sure they are aware of just how essential it is that they eliminate these conditions, one by one, before starting thyroid hormone replacement — such conditions are NOT automatically checked by NHS doctors — and they put their patients at great risk by automatically prescribing levothyroxine.
We all know of the serious ramifications for those patients who are not being given a correct diagnosis or treatment. However, it is the endocrinologists and medical regulators who are guilty of causing much of the unnecessary suffering, not those patients who are driven to self diagnose, self treat and self monitor, as those who criticize self-treatment would have us believe.
Mainstream doctors do not appear to be even aware of the many common and often undiagnosed symptoms and dangerous consequences of low thyroid. These include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidemia, hypoglycemia, hyponatremia, hypoxia, leukopenia, respiratory acidosis and others….
If sufferers of the symptoms are NOT getting a proper diagnosis and the thyroid hormone replacement that would give them back their life and health through mainstream doctors, how on earth would you recommend they do this, apart from scouring the country to find a doctor elsewhere who would help them, or recommending they get enough money together to see a private thyroid specialist. Do you REALLY have such complete faith in the medical profession to know that we should ALL leave our thyroid health in their hands, sit back and do nothing — and probably just wait to die? How can you recommend that they do NOT buy prescription medications and should not self-medicate, self treat or self monitor when there is NO other option left open to them.
If those who criticize self-treatment have personally heard from “DOZENS” of people who have followed the “increase my own dose of natural thyroid” self medication approach, then yes, something is seriously wrong with the `teachings’ or advocacy of such groups. Education should be encouraged by all, and if members do not understand the reasons why they need to take great care, such explanations should be given in such a way that they understand.
I rarely hear of members ending up in Emergency Rooms battling potentially fatal heart arrhythmia’s, atrial fibrillation, and/or ending up in worse health than before, including long-term and permanent heart damage through self-treatment. I have heard of many NHS patients being admitted to A and E, who had been treated (or not) by mainstream doctors who refused them the correct therapy their symptoms needed.
In good conscience, I do recommend that thyroid patients self-diagnose, self-medicate and self-treat if they are being left to suffer, because organizations such as the RCP, BTA TSH reference range is so huge that they will never go outside of it. This reference range is 0.5 to 10.0 in the UK — probably the widest in the world. Then, we have to put up with the fact that the only thyroid function test that will be done is the TSH — and doctors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Pathology labs refuse to test free T3 even if the doctor has specifically requested it. So, many of us will NEVER get a proper diagnosis — being left to suffer their unnecessary symptoms for years and become wheelchair/bed bound in many cases, having to leave paid employment.
Such patients are told they have a `functional somatoform disorder’ when their TFT’s are normal, when they continue to complain of symptoms — or — those who are lucky enough to get a diagnosis, who are treated with levothyroxine only yet still complain of debilitating symptoms are told also “you have a functional somatoform disorder” or “your symptoms are non-specific” .
What mainstream doctors do not recognize is that thyroid function tests ONLY test the amount of thyroid hormone being secreted by the thyroid gland. TFT’s (more correctly should be called Thyroid GLAND function tests”, do not test to show whether there is peripheral resistance to the thyroid hormones at the cellular level. This is not due to a lack of thyroid hormones secreted by the gland. Blood tests do NOT detect Type 2 hypothyroidism. Type 2 is usually inherited. However, environmental toxins may also cause or exacerbate the problem. The pervasiveness of Type 2 has yet to be recognized by mainstream medicine, but already is in epidemic proportions. I think many sufferers of the symptoms of hypothyroidism know very much more than their medical practitioners. I do know which road I would like to follow — that is to find an excellent doctor I could trust implicitly, but sadly, the ONLY road many of us have to follow to get back normal health is the one where we have to self medicate.
Please do NOT blame patients who are driven to self diagnose and medicate as being the reason why the US government, or any other government for that matter, are now eliminating the availability of natural thyroid and synthetic T3. You are being sucked into believing what they want you to believe.
Levothyroxine is a synthetic medication that can be patented, and has made billions of pounds for the Big Pharma and for the regulators of hypothyroid guidelines. Natural thyroid products cannot be patented. Should doctors prescribe either synthetic or natural T3, the majority of sufferers of the symptoms of hypothyroidism would regain their normal health — Big Pharma would suffer.
You should perhaps read the book “Dirty Medicine” by Martin J Walker if you have not already read it. Those who criticize self-treatment appear to be accusing all those suffering symptoms of hypothyroidism who have been driven to buying medications without prescription and self treating as making it worse for the rest of those suffering. It is NOT them who are abusing T3. If a T3 hormone containing product was properly prescribed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.
Self medicating, whatever drug we are taking, whether using a T3 hormone containing product or not, is always risky and patients must be fully educated in its use. However, self medicating with any drug runs risks, but I would rather self medicate with the chance of getting my health back than leaving my health in the hands of totally incompetent doctors — incompetent because the teachers in our medical schools are incompetent.
For those who are being left to die, without the treatment that will make them well, do-it-yourself medication is the only option left open to them. Would you really deny them this? Leaving patients without the thyroid hormone they need is appalling and one of the reasons TPA is campaigning to bring about changes in the diagnosing and treatment of the symptoms of hypothyroidism.
It can be appreciated to say to work with the right doctor, but what do you recommend if patients cannot find the `right’ doctor?? Perhaps you should all come over here to the UK and help those sufferers in finding the right solution and offer to help them help to find a “good doctor”.
Sadly, there are never any solutions given or alternative to self diagnosing, self-treating or self-monitoring, other than to “find a good doctor”. This does not help Internet thyroid support forum members.
Sheila
http://www.tpa-uk.org.uk/
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50 Responses to “Should thyroid patients avoid self-treatment at all costs??”
Jasmine Jennings
I’m in the states and had the same rediculous medical mistreatment as described above. I self treat with a product I found the name of here and it has been working very, extremely well for two years(since the reformulation of naturethroid) … we are responsible for our own health. Educate yourself. Empower yourself. This site has been a God send. Many thanks. ðŸ™ðŸ¼
Terry
I would like to know what u self treat with
Janie Bowthorpe
Terry, for anyone to post a product is fine, but to post where they get it is not. The FDA watches STTM here and there.
Steve Smith
It is unfortunate that so many people with thyroid problems are sent instead to cardiologists who misdiagnose and ignore blood test which would conclude that the patient either has low thyroid or too much. Cardiologists take advantage of patients sending them for numerous expensive testing and then prescribe expensive treatments and drugs that sometimes a patient has trouble paying for.. Patients with thyroid problems like mine, for years I had went to see cardiologists, took drugs that only made me feel worse or did nothing to prevent me from having strokes. Three years ago I underwent surgery to remove a lump on my thyroid that was causing my irregular heart beat and racing heart. after the surgery my thyroid started working right. Now I start having symptoms of weakness and weight gain, I go to the same cardiologist and he says it could be I was drinking to much caffeine I should have a stress test and MRI, the tests are going to cost me after insurance $2700. Then I remember the last time I went through all of that with him and nothing was done to fix my condition by him. I reduced my caffeine and my symptoms went away. You see some doctors have this creed spread a little more money on it and see what happens. I wasn’t going to do that again. I cancelled the testing and stopped going to see that doctor, I went to see my family doctor for my annual physical a week before I went to the lab for blood draw, turns out all my tests came back normal except my thyroid wasn’t producing enough thyroid stuff, the cause of my symptoms when I consulted the wrong doctor my cardiologist, whom I now call a greedy quack. My family doctor prescribed medication to correct my low thyroid. You think doctors don’t stoop to blackmail when you disagree with them I was schedule to go to the same hospital for hernia surgery. When called to verify my health by the anesthesiologist the heart doctor, cardiologist said I’d refused the testing and therefore the anesthesiologist cancelled my surgery. I will sue the hospital, the anesthesiologist and the cardiologist in question for his improper diagnosis. Its like history repeats if the cardiologist isn’t getting his $$$$ the patient is under their thumbs. Its is ridiculous to be treated this way, you are not in charge of your health the health facility is.
Janie Bowthorpe
It’s even worse than that, Steve. Thyroid patients are subjected to the TSH test, which is a pituitary hormone, and we have noticed in many that it can be “normal” for years, even while the patient has clear symptoms of a thyroid problem which get worse.
Or, doctors think that anything in the ridiculous “normal” range is good…and again, we have seen repeatedly that this isn’t so. It’s about “where” the result falls, patients have reported: https://stopthethyroidmadness.com/lab-values
Or, even if our hypothyroid state is finally caught, we are expected to do well on only one of five thyroid hormones i.e. Synthroid or Levothyroxine. Yet, a healthy thyroid doesn’t do that to us. It gives us T4, T3, T2, T1 and calcitonin. Thus, too many T4-only treated thyroid patients…some soon, some later….report they start having problems, of which heart issues are one of many. On the other side of coin, being on Natural Desiccated Thyroid, or even having T3 in one’s treatment, and understanding what optimal is, has changed lives and reversed problems…again as reported by patients.
Glad you are now more informed and on the road to doing better!
Jean Wheeldon
With ALL symptoms of hypothyroidism, I was told I had hyperthyroid and given Carbimazole which reduced me to a zombie. The consultant then tried to push me into psychiatry! I then saw a different consultant, who did say that blood tests are not always conclusive, and put me on Levythyroxine, but this week, after a blood test by my GP, I was refused a further prescription. I have yet to see the hospital consultant again (my appointment is currently 2 months overdue), but I was very interested by what you said about Type 2 Hypothyroidism. The first consultant I saw did say something to that effect, but at my second visit he flatly denied saying anything of the sort. He also bitched about my looking things up on the Internet – it was like he was just covering his own backside. When I get my hospital appointment, I will have some ammunition re the business of Type 2 Hypo, and see what they say!
ellizajoe
Hello , I’ve hadhimotos thyroiditis. Hypo now 18 year’s , I’m 51. I’ve also pernicious anaemia. All started after first birth of daughter. This illness has affected my life profoundly. I have actually grieved the loss of a better health and life over the year’s.Could not go work, had to put my energy into my two babies. All’s I could cope with, just about. I was on eltroxine for 11 year’s I felt worse upon taking it after i got past 50 mcg. I got to 150 mcg but felt very hypo and literally intoxicated. Was worse than taking anything at all. I’d have to stop for 3 days to detox the symptoms and start it again and repeat this cycle for 11 year’s up and down, and in between hashi flares that I didn’t know I was having as I was only ever told I had hypothyroidism. I didn’t know I had a ferratin of 5 and a b12 of 100 at that time. I felt like I was slowly dying and no one would help. I was only hanging on for my babies. I went on to have miscarriage, severe blood loss. I got access to internet by the 11th year and decided I had to take charge or slowly die or kill myself because of nhs lack of help. I was so frustrated , desperate and ill.
I got diagnosed with pernicious anaemia but injections not given to me frequently enough so I self inject as doctors won’t give more than 3 monthly. I built my ferretin up and built up my b12.I checked my cortisol. I demanded NDT and eventually got it. I self treat and self monitor.
I am well now , last 7 years only. It’s now been 18 year’s.I have my odd bad days because I still get swings of hypo to hyper however I’m gluten free dairy free and eat as healthy as i can and that has helped.
I’ve had 9 trips to A&E with hyper hashimotos attacks and also just being hypo and toxic same time from the t4 treatment and literally on the floor collapsed with exhaustion and palpitations and pulse of 190. I was sent home, never helped. Just written off as anxiety and mental. Probably was by then as I was desperate for help and they never helped. I was fighting for my life and they just looked on.
So yes I self medicate, I self monitor.I have to or I will die. I’m not dying for the Nhs. I’m doing a better job than they ever did. I only wish I’d if had access to internet sooner. Your website saved my life. Gave me the information I needed to regain my health and do what I had to do necessary to take Ndt and put the building blocks down first for it to work. No doctor ever did this for me. Just gave me levothyroxine and let me suffer. Sad state of affairs. Self educate. Self medicate. Self monitor. Live or yourself.
Thank you so much, always
Janie Bowthorpe
That is a WONDERFUL story. Thank you for sharing it.
Catherine
Thank you so much, the above is exactly how i feel. I’ve started self medicating too but unsure of how many to take, ive been on 125mc of t4 for 12yrs and no difference, slowly dying, like you say. How do i know how much t3 to take? X
Janie Bowthorpe
People start low, do a raise after a couple of weeks, then do the free T3 and free T4. Optimal puts the free T3 towards the top part of the range and the free T4 midrange. Both. If there are any problems with doing this, time to check your iron and cortisol, which T4 often messes up: https://stopthethyroidmadness.com/iron-and-cortisol
Vivienne
Hello Elizajoe What are the building blocks needed for NDT to work? Thank you
Claire
The links to tpa goes to an erotic site! ! Take the hyphen out! !!
(Thank you. Fixed! Janie)
Paul Chris Jones
How exactly do people self-treat? Reading the comments, it looks like some “buy generic T4 overseas” whereas others buy Cynomel, which is synthetic T3. But one of the most recent comment was that “Isocort and now Cynomel” are no longer available online.
I’m curious as to how one would actually obtain these medications. It sounds way easier than trying to convince GPs. greyshark7@hotmail.com
HolisticAl
The problem with medical approach is that it’s trying to fix the symptom (thyroid). Holistic approach goes for the cause ( sick and toxic body). Here is something you people need to understand. Healthy body don’t have health problems. Body can only be healthy when cells are healthy. All 37 trillion of them. For cells to be healthy they need clean alkaline micro-clustered water, cellular nutrition and pure oxygen. When cells are damaged the best option Is using the power of dissolved Hydrogen in 9.5 pH Kangen water, cellular and genetic nutrients in Reliv NOW shakes and Hyperbaric Oxygen breathing chambers. Sometimes when a patient has a thyroid problem due to radiation , we add oils for faster cell regeneration. That’s about it. Millions of people around the world using this holistic approach of repairing the body cell structure, rather then wasting valuable time and money a on useless doctiors, who only know pharmaceuticals, and nothing about nutrition.
Alice
Confused…. I was just told by my doc that my thyroid level was very low and for me to pick up this med started with a P…..
Try it for 3 mo. But call in at 2.5 mo to hav labs re drawn and see how I’m doing..,Help, what do I do? I’m 50 yrs old, 165 lbs 4’11” female . ( I hate any kind of meds/ pills I don’t take anything) am I going to die cause of my low thyroid level? What’s my next 3 steps? I do have ins. And don’t go to doc only for seasonal allergies or a severe cold….
Janie Bowthorpe
Alice, yes, when we are hypothyroid, we have to replace the missing thyroid hormones with medication. Natural Desiccated Thyroid gives us back all five hormones.
Rachel
I see that this is super old but just in case anyone wanders by it again I was wondering if anyone who’d been self-medicating ended up going back to a doctor/finding a doctor that was willing to treat them the way they should be, and if they TOLD the new doctor they’ve been self-medicating, or how they handled that. I’ve been self-medicating for years now and I’m definitely much better than I ever was in a doctors care, but I’m not anywhere near perfect. There’s only so much I can get online and now what I’m used to taking is currently unavailable to buy (I think lots of us are in that boat)-Cynomel.
There’s a doctor I haven’t been to yet in town (the only one, I think, heh), who seems to have really good reviews on various sites and who’s web page seems like he will be open to the kind of treatment I want. And if he fails, I have a friend in a city a few hours away who’s currently being treated by a doctor she really likes, so that’s also a possibility. However, I’m not sure how to handle the transition. I would like to be able to be completely honest with the new doctor about what I’m taking/how much, what my past experience has been, etc, however I don’t want to be labeled before I even have any tests run or engineer some kind of bias against me for my self-treatment. I’ve had such bad experiences with doctors (as pretty much everyone has) that I’m really trepidations about giving them a reason right off the bat to look at me as anything other than an ideal patient.
On the other hand, I really don’t want to start from scratch or something with initial testing and doses and misinformation. (1. it wouldn’t be accurate since I’m already on something, and 2. it would take forever and I’d collapse into a sad pile of energyless misery in the meanwhile). That would also not be ideal in any way, heh. Has anyone had experience with this? Good/Bad? Is there any way to approach this subject without incriminating myself as some kind of ‘crazy self medicater’? I’ve definitely had the experience in the past of even the alternative type practitioners deciding that my symptoms were all in my head because they couldn’t figure out that I had a problem with Reverse t3 and wasn’t responding well on Armour. I had one of them prescribe me an anti-psychotic. Thanks dude. So, needless to say I’m concerned about blowing my chances with a new doctor right off the bat. Especially since he’s the last doctor in town and he doesn’t take insurance. Ouch.
Any insight would be super appreciated, even if I’m able to order Cynomel again in the near future (and who knows, man) I still have symptoms and issues that I’d love to be able to address and work with someone with (someone who could order bloodwork and prescribe various things I wouldn’t have to wait months to possibly receive in the mail, heh). Ah the dream. Sorry for rambling on, but thanks in advance!
Janie Bowthorpe
It’s somewhat individual if someone feels a doc can accept self-treatment or not. It seems like most do, but there could be exceptions. Some patients have simply stated they moved here from another state and/or the doc retired they were using. lol. As far as continuing the same treatment, some docs have been fine when a patient says “I’m on so-and-so amount of NDT or T3 and do not want to change it”.
Rachel
Thanks for your response! I’ve decided to bite the bullet and try this new doctor with honesty and all. With first losing Isocort and now Cynomel I really feel like the options for self-medication have dwindled so much that if I want a quality product I’m going to need a prescription (which is just so crummy, btw, considering how much resistance to healing I’ve had with doctors in the past). But thanks again, I felt like your article really gave me the boost to feel okay about having been treating myself, and not ashamed as though I was doing something I wasn’t supposed to do. If I hadn’t I can’t imagine where I would be today. Non-functioning, I’m sure.
Janie Bowthorpe
There’s no shame if someone feels forced to self-treat. The “shaming” has often come from another advocate who has tremendous professional jealousy of STTM and sees how some use it to self-treat. lol. But many patients understand why you chose to self-treat when so many doctors are so far behind what we know to get well. Good luck with that new doc! I, Janie, always work hard, hard to find an open-minded doctor who is willing to learn from me, and I wish you the same! 🙂
Tiffany
What a wonderful post! Please add checking levels of iodine, bromide and fluoride to your initial assessment list, and you’ve got yourself a working protocol there!
lisa truitt
To Lynn in Ireland, I don’t think it is technically legal to buy prescription drugs without a prescription in the U.S. either. Sometimes packages coming from the internet pharmacy I use are confiscated in customs. Most of the time they are not though, I assume because there is just such a high volume of mail,(and maybe low motivation of workers as well) that usually it goes through customs without a problem. Do you know for a fact that businesses won’t ship to Ireland? If any do, have you tried ordering? Can Ireland’s customs truly prevent people from getting shipments containing meds?
Matty
Can anyone tell me via private email and not here where they buy liothyronine without a prescription? I have been through too many doctors; some just come and go in my town without warning.
Thanks,
Matty
Sharon Markham
I am in the Uk and struggling with many symptoms of hypothyroidism… My TSH is 3.1 so my GP will not investigate further. His advise is to try working part-time and sleep more!!! I already go to bed smae time as my 5 and 8 year old!!!
I am going to read more on your website and hopefully then I can work out what to do next. It’s nice to know I am not alone with this issue and that self treament could be an option.
Kate
Wow! Great read. I had just sent a comment on the most recent post by Janie, and had not read this article yet. It covers precisely what I was saying about access, financial means, as well as the reckless treatment (or lack thereof) of many doctors toward patients.
I am glad I am not alone in my assessment.
Oh, and I love that graphic of the granny!
barbara 52
from france
Same here! Been diagnosed hypo in USA 1987. Was told i had to take thyroid sodium tablets for life! not more. the only reason why this information stuck at all, was that my first tablet had such a powerful impact. instead of feeling down and tired and nervous (with two babys and more then difficult husband), i felt like a nobel prize winner,…(wish i could get that feeling!)but only for 3 days.i had been told to take as i wished.., so i took two, then 3, ending up being a very aggressive person, that i did not recognize, it worried me! the doctor said, this was not possible, the effect was not to be expected for at least 2 weeks! what a coincidence then, i never felt like that again. he said there was nothing more to do, i must be allergic to the thyroid hormones, which are, as a result of this allergy, destroyed in the blood , before they can reach whatever they where going to!
So i did not take medication and felt always overburdened, by all. But every time i saw a doctor, in Germany, France, USA, i mentioned hypothyroid! and was tested for tsh and t4, and was always within the norm, one side on the top, the other down low.i saw that!pointed it out. no one took an interest. and finally ended up in a severe depression 98.i was married, had 3 kids .
5 years i don’t recall at all. But one day i decided to stop the antidepressants, they made things worse! french doctors don’t make it easy on you though! they insist. it must help! try this one , it’s the latest model! they were all awful!my weight, 106 kg.
On and off i took t4 , but, since i never felt a difference,at all, and all my energies was focused on the deadly! depression, i had no clue of what was happening to me. my husband was not supportive, i felt glad he did not throw me out!my three children suffered in ways, that kept me from suicide! they suffered so much, i could not allow myself to make them worse .i felt like an oversized vegetable on a couch , that could not even concentrate on trying to look normal, happy. try smiling one minute, if you don’t feel like it! but i “saw” and sensed all! the worry, the disrespect, the friends turning away…
My thyroid was checked again one day. tsh was 27. i was told to take better care of myself, given t4 1.00, instead of occasional 0.75, and was told to wait 6 months for the effect measurable. ,tsh is now 0.12 instead of 27.44. i still feel bad!!!
And there sits this golden idol of a doctor in endocrinology, (the third, in 10 years), that i waited in despair to see, since 6 months! travelled 160 miles, with all my lifelong stack of documented hashimoto .
and she has the time to say: you feel bad, no wonder, you are overdosed! a classical hashimoto! nothing to be concerned about, it is easy to treat, but i feel realy bad, see you next year.”
what for?
Now my tsh is 3.21, the t4 is 14, and i don’t feel well at all. I call. the tsh is the only reliable indicateur!
but i have done some research, and found, that my well being is very much influenced by the lack of free t3!
you have been on THE INTERNET!!!!? Ever so sorry! do not go on the internet, it is dangerous!!
I am on social security! i had a good education, i am a teacher for math and biologie, i am old, i am declared handicapped, because of my depression! i seea psychiatrist since 10 years, who knew ,and never said a word!
I am furious, i feel cheated out of my life. i have to force myself to brush my teeth! i even considered buying illegal drugs, so i can clean my house! valium, to avoid sleeping problems.
Thank gods, all of them, for people like you! i admire your force and your courage, but above all i love you for having put your time into this, where as others, not the suffering, the healthy ones,just walk by…
people, that are eventually doctors or politicians or lobbyists,do they lack the imagination of such suffering?
thank you so much!
Got to pursue my next steps on the way up, i slightly raised my t4 to 112,3 weeks ago. and feel better.
will pester the doc for tests, will research further, will go prepared will write letters will fight! thanks to you!
so very much!
not much left,of the thyroid, how convienient! no cancer, no need to operate! lucky you!this is a simple hashimoto, the easiest form of thyroid problem, just take exactly that much, see you next year!
Theresa Roberts
Jo and Tamra, you bring up an interesting point. I’ve long suspected that diabetics get all the love because of the potential for marketing that they present. How many ads do we see for glucose metres, testing strips, etc.? I think modern medicine may have moved away from natural insulin, as well (I seem to remember my Dad taking pig’s insulin back in the day). Does anyone see a trend here?
Tamra
Jo, I think I speak for many of us thyroid patients when I say that diabetics get all the love. Maybe if I’d had diabetes instead of Hashimoto’s, then my first three endos would have diagnosed me rather than saying, “Nothing’s wrong with your thyroid. Your TSH is normal. Just take your vitamin D and you’ll be fine.”
Jo
Diabetics self-medicate with insulin and self-monitor on a daily basis. It’s expected that the diabetic will take responsibility for their own well-being. In fact, diabetics who don’t take responsibility for their own dosing are deemed ‘irresponsible and difficult patients’. Insulin is potentially more harmful and life-threatening in the short term than thyroid hormones.
Why then are thyroid patients treated in such a paternalistic and controlling manner by their doctors who pay more attention to a number than to the person who is sitting in front of them? Is it because loads of us are women?
Francesca Thomas
I know this is years later – but I was just diagnosed as being Hypo this week – after being a “Graves Hyper Patient” for the last 4 years!! Anyway, the answer to your question as to why Diabetics are allowed and encouraged to self medicate and yet Hypo patients are not given the same freedom – the answer is MONEY. Insulin is synthetic and the ongoing demand for it makes HUGE profits for Big Pharma. Most Hypo patients usually end up taking Natural Desiccated Thyroid which cannot be patented and therefore does NOT make the huge profits that Big Pharma is looking for. That’s why they keep pushing the Synthroid at us. Synthroid is the biggest money maker for Big Pharma and is the ONLY drug permitted to be prescribed to Hypothyroid patients. It must make Big Pharma BURN with anger to see so many Hypo patients turning their backs on Synthroid and self medicating with that old stuff that doesn’t even work (at least that’s what they say) – never mind that it worked fine in the half century BEFORE the synthetic stuff was invented
Tamra
If I lived in the UK, I’d have no choice but to self-medicate. I don’t know how I’d function without my T3. Luckly, my doc treats my symptoms and frees and doesn’t rely on TSH. I sure hope the United States’ new government-run health care system doesn’t end up like the UK.
Linda is also right about gluten. I’ve felt my best in years since giving up gluten, and I’ve had to lower my thyroid hormone twice! I’ve also eliminated corn and soy and cut back on dairy. Thank goodness for almond milk and coconut ice cream.
Me
“Self-medicating is self-destructive”. That’s the announcement made today by someone on another list.
I would love to challenge these people personally but that can’t be done in their “professional” environment. Free speech does not exist there. What they do know how to do is hit “delete”.
So, what would you have us do? Have you lost your job with a very prestigious company? Did you have to move in with relatives because you can’t pay your rent or buy food? Have you ever been checked on at 1pm, because you’re still not awake, to make sure you’re not dead. Try it on for size. When I was under a doctors care, I wound up in the ER because they don’t know where to buy a clue. Luckily I’m not 6ft under yet. You’d be singing a different tune if you don’t have a doctor who knows how to help you!
(From Janie: I want to underscore to readers of these comments that neither I nor STTM or patient groups we recommend is saying not to find a doctor. It’s great to have a GOOD doctor! This is why a strong page on STTM is How to Find A Good Doc, as well as a growing list of good docs in one of those groups. But this post, like others, apparently represents many folks who are frustrated when being told that what has saved their lives, shouldn’t be done.)
Marie
Great article! I’m quite opposite from most here in that I started with Armour with a Naturopath and never felt quite right on it. The natural docs I went to always acted like it was a must I be on T3 as well, not really imagining that I might be different than many of their patients.
Over the years I’ve tried Armour once a day, Armour split into two daily doses, Armour with a little T4 added, T4 with Cytomel, Compounded T4/T3 combo, and I’ve finally found that just plain T4 was the answer for me all along, go figure!
I went and looked at some of my old labs and realized that when I was first diagnosed with hypothyroidism, my Free T4 was low but my Free T3 was not. I must be a good converter. Too bad I wasn’t more educated about that back then. I truly wish more docs would simply be into finding what works best for each patient, instead of just remaining loyal to their thyroid treatment of choice.
My current problem is that no doc wants to put me on the dose of Synthroid I feel best at, which is tween 300 and 400 mcg a day, pretty much a full-replacement dose. So, I buy generic T4 overseas for about what I would pay for it here and treat myself. I’m due for more labs soon and I’m sure the docs will once again freak out at my low TSH, despite my T4 and T3 being in normal ranges, go figure. I really don’t care anymore because at least I feel like a human again!
(From Janie: So glad to read you found a good treatment, and it’s too bad doctors won’t let you get high enough if you feel best on it! One thing to watch out for: as you age, being on T4 alone may backfire. If you have rising cholesterol, or rising blood pressure, or heart problems, or depression, or unexplained weight gain, may want to relook at seeing if you can do good on a T3 product with good adrenal support. https://stopthethyroidmadness.com/things-we-have-learned Otherwise, it’s good to read you feel well!)
Sheila Turner
Hi Cara – no, your post was not stupid, it was an excellent point you made and I apologize for giving the wrong impression. Indeed, I should have made it clear that TSH is a hormone secreted by the pituitary gland – it is not a thyroid gland hormone. Many thanks for pointing this out and I promise not to make the same mistook again.
Sheila
Cara
I have a stupid question. In her post, she mentioned that the TSH test is only good for testing thyroid gland function. I thought I remembered reading on this site that the TSH only tested the function of the pituitary gland, not necessarily the thyroid….is that not right?
(From Janie: yes, Cara, that is right. And not a stupid question. The real TSH is a hormone released by the pituitary gland to go and knock on the door of your thyroid, so one is testing a pituitary hormone function with the TSH, NOT whether all your tissues are receiving all the thyroid hormones they need. And they are not!!)
Maria ; The Ever Frustrated Aussie Who Is Starting To Doubt Her Own Sanity!
I self-treated for a while and got my head ripped off by every doctor I saw. They would ask what dose I was on, I would tell them and then the lecture would start. No, I didn’t have T3 but I was getting desperate. I was going by my own symptoms. My previous doctor, with a bit of cajoling would do any test I asked. The doctor who has replaced the previous one (he was sacked from the medical centre for being ‘too nice’) pretty much tells me I am being too over-cautious and suffer anxiety. I asked for Ferritin, he does Haemoglobin, I ask for corrected calcium he does total calcium, I ask for Free T3 as well as the other Thyroid tests he refuses to test. My Reverse T3 is super high, but Aussie doctors have no idea what it means, if they even BELIEVE in the test!
In a small town, with few doctors, and they all seem to know each other, ( I had one say, Oh I heard of you, you went to Dr.BlahBlah, yes, he told me all about your anxiety. So much for patient confidentiality!) I am getting to the point of just curling up and staying in bed with my cat. He is nice, he licks up my tears and puts his paw on my arm when I cry…..
(From Janie: Maria, your knowledge about free T3, ferritin, RT3 is right! They are clueless! Hang tough. We are on your side! I’m sorry you have to deal with this, and ESPECIALLY the lack of confidentiality!)
Gary Rich
Janie, I need to share, after living this thyroid experience now for a decade, and having ongoing struggles, and having “fired” 5 Endos myself, I finally went to Dr. David Brownstein’s practice in Michigan, where I see Dr. Jeffrey Nusbaum, and finally not only have a doc who embraces switching me to Armour (which has made huge improvements in how I feel), but is also a physician who after looking at my labs (TSH), turns to the question “but how do you feel, pay attention to that first and foremost, the lab values are only a guide”. “Trust your own instincts, your own body and how you feel, what you sense. Do what needs to be done, I support you”.
How refreshing!!
(From Janie: Gary, I am so happy for you!! It’s nice when some of us can find a good doctor like that! Good for you and him.)
Linda
In self medicating, I would also suggest that you look at your diet. The food we put in our mouths daily has a HUGE impact on the thyroid.
I started taking thyroid meds when I was 15 years old, every year my hypothyroidism worsened, as well as having Hashimoto…it wasn’t until I was 42 years old that I was diagnosed with Celiac Disease. Now that I have been gluten free for 6 years, I no longer test positive for Hashimoto and have leveled on the amount of thyroid med needed to be “normal”.
Also, besides gluten, there are so many foods that destroy the thyroid function that need to be reduced or eliminated.
Marilyn
I am glad that there is some one out there that advocates for self treatment. I think it is awsom that she has taken the incentive to treat herself and to help her body to heal being as most doctors leave you sick and almost debilitated.
I have to self treat, most out of neccessity than anything else righ now. I have no insurance and I find that treating myself is easier and cheeper than insurance.
It can be hard ordering meds online through other countries though, but once you find a good pharmasst you can order from over sease then that is great you are about ready to go.
This was awsome thank you so much Janie
Me
Emma, you are so right. Some of us may not literally die in 5 years but our lives are such that we might as well be dead! We are indeed in the dark ages but can you imagine all the office visits and prescription drugs these “doctors” would lose if we had proper thyroid treatment. I fear it will take many years to come out of these dark ages but with people like Janie advocating for the patient, there is some hope.
Just when I think it’s bad here, I read what you and folks in the UK have to go through and it makes my head spin. We feel for you.
Mmotherof2
I had a total thyroidectomy in Jan of 2009 and if it werent for this site I would be a big pile of flesh on my bed too tired to physically live the life I have been given-not to mention the destruction of my mind that was preventing me from even caring! I was on levothyroxine after surgery and until Oct when I finally found a Naturopath who would prescribe NDT for me and run some additional blood tests- shazam I was really deficient in Vit D3 and the levo wasnt working. Prior to taking NDT, while I was feeling yukky, I searched the internet looking for answers and desperate to find people that had them and who shared my experiences- I found it here!! I was so relieved to know that I wasnt going mad and that there was HOPE for me! I was determined to take control of my health. This site, among a few others, armed me with information to bring to my endo and helped me realize that if she wasnt going to treat my symptoms it was “alright” to dump her and find someone who would. I was desperate, and I was determined to find a Dr who would prescribe NDT! Now I monitor my symptoms and I DO self treat to an extent- plus I take many supplements. I will NOT turnover MY health to a Dr unwilling to treat me according to my symptoms, and who will NOT listen to me. I read that post by Mary S and was flabbergasted and felt almost stripped of my “power” to take control of my own health- Give me a break! I hope that no one who was feeling like I was a year ago reads that post and decides to turn the reigns over to an incompetent endo! People MUST be their own advocates and they must have hope.
Emma
I have TSH and T4 levels that are erratic and frequently lie, bearing little resemblance to my symptoms – I have both Hashimoto’s and Graves’ antibodies. Because I’ve been unable to get my T3 measured on the NHS thus far, I don’t yet have the proof that my T3 levels are not dictated by my T4 levels, even though I know they aren’t, but now I realise why my many requests for T3 tests have been refused.
Because my hormone levels are erratic due to autoimmunity, I’ve often had to self-medicate with increases and decreases in dosage, because my idiot doctors won’t test me or change my dose fast enough to keep up with my thyroid. This way I get to live a reasonably good life, only feeling ill for a few days, rather than weeks, which is downright dangerous and frightening, as hypothyroidism gives me heart arrhythmia. Of course, the sacrifice I make for managing my own health and keeping my hormones under tight control is the endless problems I have in dealing with my GP and endo. I don’t understand why. Diabetics and epileptics are given the freedom to manage their own doses. I feel like I’m in the dark days of diabetes treatment, when diabetics went for a blood sugar once a month, did what the doctor told them, and were expected to be dead within five years.
I once had a T4 of 30, with a resting pulse rate of all of 105. I was just fine after a couple of days. After that, I knew what it felt like to be thyrotoxic, and I realised how many times in the past I’d been hyper as well as hypo due to autoimmune attack. Now I know my body inside out and I’m sure within a couple of days of onset of warning symptoms whether I need to raise or lower my dose or not.
Lynn
Just found it: http://zh-cn.facebook.com/topic.php?uid=121680434089&topic=15704 Awful, awful stuff.
What about people like myself who would have to travel to the US to get treatment for RT3 issues, if they wanted to work WITH a doctor? It is hard enough to get NTH in Europe; never mind get on an RT3 protocol.
Most of my wages go on my meds, labs and doc visits. If I could see someone in my OWN country, I would have many of my labs paid for, I would get some money back on my office visits and would have my prescriptions subsidised by the government. I would literally save thousands of €€€€ a year. How much easier my life would be!!!
But, not everyone can do that. In fact, my work has been cut back recently and I am worried about how I will continue to pay for my very expensive doc visits and treatments. Furthermore, my country has similar treatment protocols and regimes as the UK; but the difference is we are not allowed to self treat. It is illegal for Internet pharmacies to sell products to Ireland.
So, what exactly is a person in my situation supposed to do?
I tell ya; if I could self treat I probably would. No matter how bad it is the US; it is worse here in the UK and Ireland.
Sheila Turner is an amazing woman who should be knighted!!! Furthermore, she and Janie both look the picture of health.
I would really like to hear directly from the patients who suffered such bad cardiac arrhythmias. Did they address their ferritin, B12, electrolytes and adrenals before they ramped up their thyroids?
Me
Thank you Janie for being a REAL patient advocate. I see you removed references that might offend, which was diplomatic by the way, but we know about the “shame on you for self treating” nonsense.
If it weren’t for self treating many of us would be dead today and I don’t mean that figuratively. I guess we should be “ashamed” of ourselves for trying to save our lives. We rarely have help from the medical community. If anything they make us WORSE. I guess people who shake their fingers at us in disgust for saving our own lives haven’t suffered enough themselves. Thanks to the suggestion to only work with a doctor, I haven’t worked in 14 years. That’s what working with a doctor who only tests TSH and treats with T4 only and who doesn’t have a clue in the world about adrenal issues not to mention all the other intricacies we know about, will get you. Misery!! I’d like to see what those who say not to self treat would do if that happened to them. It’s a fantasy world that we can avoid self treating.
Lynn Dunning
Where is this post by Mary Shamon on self treating?
Tina
I am so very grateful for the efforts of people like Sheila and Janie. I am one of those Brits who sadly have to self-medicate, but I am just so glad I found out the truth before I lost my life.
After battling with medical authorities here in the UK for eleven years, it was my internet search about myxoedema that led me to discover that I wasn’t imagining things, and that yes, there really was a problem. Every time I dragged myself to the doctors, I was sent away, diagnosed with something “new”, armed with even more drugs, which I had to add to my daily dose of Levothyroxine. Every time I asked whether it wasn’t possibly something to do with my hypothyroidism, I was patted on the head and told no, everything, according to my blood tests was “normal”. Ha!
Nine months later, I am on the road to becoming the person I *used* to be, before this illness blighted my life. I can now wake up in the morning, not aching in every muscle; not exhausted, despite a long night’s sleep; my hair shows signs of being healthy again, and my eyebrows are growing back – I just wish I didn’t have to pluck them to make them look tidy!! I have a long way to go – I still show signs of myxoedema, and I have to lose all the weight I put on over the last few years. However, I appreciate that it took more than 11 years left to find the root of the problem, so I’m guessing it’ll take a little while to fix.
I just wish I could also get the last 5 years of my life back too…
Tanya aka @netchick
Hear, hear, Sheila! (and thanks to Janie for re-posting this).
You wouldn’t believe the number of people who reach out to me via my blog in Canada because of this issue. I’ve certainly jumped through hoops to get prescribed natural T3/T4 — And, now that I’ve moved to a different province, I’m back to square one, as well.
One thing is for certain… I’ll NEVER take Synthroid again. I’ll order the porcine thyroid overseas if I have to.
I can’t believe in 2010 we’re still facing these crazy, and mis-informed doctors. Something needs to be done.
Dwayne
I fortunately have a good doctor to work WITH as she lets me participate in my own treatment plan and actually encourages this. However before I found her, I suffered years. I went through doctor after doctor to suddenly realize that now, because of the poor treatment I received, I have no respect for them AT ALL. NONE. Most of them are just arrogant and think it’s their way or no way- I say to every thyroid patient I know out there- if your doctor doesn’t want to listen to you and give you the medication that YOU want to try or use- then good- by all means I highly encourage you to do it yourself. I did before getting to the doctor I have now and I was so much better off- doctors made the situation much worst because they are so educated- what a fucking joke
Kris Peterson
Well said Sheila and a very good response to Mary Shomon’s “shame on you for self treating” blog the other day which you may or may not have read. I do work with a physician who advertises that he uses dessicated thyroid and bio-identical hormones but his knowledge is only partial knowledge and without some education and knowledge on my part my condition would continue to deteriorate, so we must take responsibility for our health and not just leave it to physicians. I feel I owe a huge debt of gratitude to people like you and Janie Bowthorpe for helping all of us to educate ourselves and take back some control of our health.
Diana Hsieh
Wow, that was a stellar post. Thank you!
My own doctor was willing to try prescribing dessicated thyroid after two months on Synthroid did nothing for me. With that switch, plus high-dose iodine, I got my life and my mind back within the span of a few days. (Before that, I felt like a half-dead corpse, unable to exert any physical or mental energy.)
It angers me beyond belief when I hear about how some doctors refuse to even consider a trial course of desiccated thyroid with their patients. You might as well ask them for crack cocaine! But that’s nothing compared to the downright criminal situation in the UK.
Sadly, people suffering from hypothyroidism are not in the best shape to fight for their rights. Hopefully, those of us who are doing okay can speak out for them — and we’d best do so loudly!
Thanks again for the great post. I hope to blog something on it in the next few days.