Hi. I'm doing a petition, "Thyroid Patients Need Better Treatment NOW"
in memory of my brother, Jordan, who was a Hashimoto's Autoimmune
low-thyroid patient. Hoping you'll sign & share...here's the link for it:
https://www.change.org/ThyoidBetterTreatment
I think Jordan had undiagnosed and untreated Hashi's low-thyroid for
too many years, and it led to his liver going bad. He ended up in the
hospital in 2015 where his liver got diagnosed, and I begged for them
to run thyroid tests--because I felt there was a connection. We have
a big family history of thyroid trouble, and Jordan didn't even drink to
have a bad liver. But he did have many low thyroid symptoms,
for years. At the hospital, the typical thyroid tests came out "normal,"
as usual....

But I did more research, and I found that if you get blood tests for
thyroid antibodies, these can sometimes show there's a thyroid
problem, even if the usual tests are OK. I had to beg the doctors to
run these tests. Finally did, and Jordan was diagnosed with Hashimoto's
autoimmune thyroid. He started treatment, and it helped to some
extent, but it wasn't enough to repair the liver damage already done.
Jordan ended up needing a liver transplant, and he was in the hospital
waiting for one, at the top of the list, in March 2020. But due to Covid,
they stopped getting donor organs and doing transplants, right when
he needed it. He passed away on March 31, 2020.

I am heartbroken!!!! It shouldn't have come to all this. I truly think if
his thyroid had been treated properly, much earlier, his liver would've
been OK. No one should go through all this. My petition is directed
to the White House. I'm asking for more funding for research into
better treatments for both low and high thyroid; earlier and better
testing and diagnosis of thyroid problems; better education for
doctors on how treating the thyroid well can help prevent other health
problems from happening; better oversight of the thyroid drugs we
already have, etc. I think I need a LOT more signatures than what I've
got now, to get attention for this. Please consider signing and sharing
the petition...it could help you, and maybe someone you love. Thanks.
from Jordan's sister, Starr D. SD-starr7

Have you been experiencing illness for 2+ years but don't have a diagnosis?
Have you been feeling lonely or isolated?
I want to hear about your experiences.

I'm looking for people aged 18-64 with undiagnosed physical symptoms for 2 or more years who experience loneliness/isolation. You will be asked to complete a confidential online questionnaire about your experiences.

If you're interested, please follow the link for more info and to get to the study: https://uwe.eu.qualtrics.com/jfe/form/SV_0v1W9LPSKUFvvH8

Thanks for participating!
(posted with permission)

For the last 2-3 months my heart will race off and on and is very sensitive to caffeine and physical activity. Like I will run up the stairs and my heart will be racing. I'm having a hard time sleeping because of it. I've also been having shortness of breath and a tight chest a lot the last couple months. Has anyone else experienced this?

Does anyone know how to stop internal trembling and a pounding heart when lying down? I have already low dose naltrexone and NDT. All the B vitamines and a shot of B12 twice a week.

Is this sub related to the website, stop the thyroid madness?

I've been doing thyroid supplementation for severe CFS for a few weeks, based mainly on ray peat's work and this guide: https://www.patreon.com/posts/thyroid-primer-14839477?utm_medium=post_notification_email&utm_source=post_link&utm_campaign=patron_engagement&token=eyJ0eXAiOiJKV1QiLCJhbGciOiJIUzI1NiJ9.eyJyZWRpc19rZXkiOiJpbnN0YW50LWFjY2Vzczo2YjY0ZmE5Yi1mODgzLTRkODgtYTZhNi1mNzhkMjQ1M2FjYTQifQ.h8xKCk4P5vWHqQJMQQ5IjRCYTRBOR1CNQ9txydI67YQ

There was some rockiness in possibly taking thyroid without enough food or with too large doses too late at night, but mostly the experience was overall beneficial. I can't get too detailed because extremely tired atm (for reasons I'll go into) but it didn't just help with energy in a stimulating sense, it helped with sleep, with muscle pain that I believe was caused by lower anaerobic threshold and lactic acidosis/reductive stress, and helped me feel warmer.

I have a more detailed, but still not organized account of this on a different forum that I may copy and paste or perhaps just end up liinking too if I feel okay privacy-wise.

Anyway, long and short of it, it basically stopped working. I'm not worse off than when I started a few weeks ago (I was in a lot of pain and having to drink tons of coffee and take lots of supplements just to barely manage my symptoms), but I'm almost as bad as I was.

I'm still at fairly small thyroid doses. Right . now I take about 2-4mcg of cynomel twice a day, and 1/8th of a tablet (maybe a little smaller) of cynoplus once an evening and this seems very much not enough. I know this is on the low side but I'm certainly concerned with having to escalate doses as people sometimes talk about in CFS, and ending up suppressing natural thyroid production or whatever. I wonder if the best thing to do would be to have very small amounts of T3 compounded and take them hourly rather than every few hours.

Danny Roddy and Ray Peat talk about going by symptoms + pulse and temp (the latter two can be thrown off by stress hormones), and treating symptomatically, but I wonder if that's a danger in CFS, which may have a different problem with thyroid regulation than classical hypothyroidism.

The T1am theory person talks about this idea of thyroid dysregulation: http://www.chronicfatiguediagnosis.com/2018/02/23/t1am-the-unknown-thyroid-hormone/

http://www.chronicfatiguediagnosis.com/2018/05/23/thyroid-hormone-my-friend-my-enemy/

She discusses her experience, which isn't the exact same as mine (I didn't have the extreme mania, except when i overshot a couple of times, nor the POTS upon withdrawal), but is sort of similar in that I tried thyroid and had it sort of stop working. She ends up recommending Blanchard's method and/or lithium orotate with thyroid.

Anyway I'm kind of just maddened and feel out on a limb here, now that I know, intuitively, that thyroid is good for me (it was really wild to feel what health feels like for a brief period of time) but that it could also be complicated to get it to work for me.

Why do so many people with CFS have things that help with metabolism work for a short period of time and then stop working? COuld it have to do with the "metabolic trap" that researchers are discussing, or is it just not trying things for long enough/with the right protocols?

I would like to hear stories from people who've tried thyroid drugs to cure mysterious syndromes like CFS/FMS/Major Depression/IBS that look awfully like mild hypothyroidism.

The ideal is to comment here with details of your current symptoms, including the onset pattern, and what you are about to attempt, and then to report back a couple of weeks later with what happened. I'll call these 'pre-registered anecdotes'.

But I'm also interested in the experiences of people who tried it in the past. And I'll keep scores for both categories here.

Example Before

Hi, I'm a 32-year old female, I got CFS after a viral illness from which I never properly recovered. I've got 90% of the symptoms on Stop the Thyroid Madness' list. I score +30 on the Billewicz test, and my waking temperature (measured very carefully after reading the guidelines) averages 36.1C/97F.

I have been to the doctor, and he tested my TSH at 2.51 with a reference range of 0.3-5.5. As a result he assures me that I do not have a thyroid problem.

I intend to try fixing it with 1grain/day of desiccated thyroid (Thi-royd off Amazon), and will report back in two weeks time.

Example After

I've been taking 1grain/day NDT for two weeks and it just made my fatigue worse. My waking temperature is now 39C I'm shaking uncontrollably and I've had three heart attacks. UR RETARD AND THIS IS ALL RUBBISH. DONT TRY IT!!!

Summary so far

(from this and the previous posts https://www.reddit.com/r/thethyroidmadness/comments/7y8uay/anecdotal_evidence_wanted_2018/ https://www.reddit.com/r/thethyroidmadness/comments/59ubhr/anecdotal_evidence_wanted/ , now archived)

pre-registered (2 tries, one fail, one ambiguous)

u/SchodingersDingaling Apparently classic case, don't have details, tried NDT to no effect, tried T3 up to 150mcg/day. Slight rise in heart rate, blood pressure, appetite and serious weight gain. No other effect. [Edit: Although apparently after a year of experimenting he tried T4 only and made a spectacular recovery! I am at a loss to explain this and wonder if it's just coincidence]

u/rfugger

Classic case of CFS apparently caused by a flu-like illness, tried both T4 and NDT, got a small boost, some unpleasant hyper-type side effects despite the moderate dose, and decided it wasn't worthwhile.

after the fact (2 successes and one fail)

u/Archetypa Diagnosed CFS and started natural thyroid hormone 2 months ago with no change so far.

u/wcstone Seems to have had the same experience as me. Symptoms but normal blood tests, NDT makes him feel better.

u/Discochickens Diagnosed with depression, 10 years of anti-depressants, diagnosed thyroid with a TSH of 6, given NDT, 12 weeks of NDT fixed the "depression" too.

[P.S. u/SchrodingersDingaling and u/rfugger count as pre-registered since they told me what they were going to try before trying it.]

I've made a summary of some of the lines of evidence I've found for idea that CFS and thyroid disorders are somehow related.

I've tried to keep it as short as possible, just to give an idea of how much evidence there is out there once you start looking. Each one covers quite a lot of detail. If I've got the wrong end of any sticks, please let me know.

Has anyone got any evidence against? The only thing I've managed to find was a paper from Turkey claiming that fibromyalgia people have raised daytime temperatures, and a very small study of CFS patients showing that they had normal-ish core temperatures. But I've also found a paper claiming something like the opposite, low metabolic rate and low waking temperature in fibromyalgia.

It's quite possible that all these papers are simultaneously correct, but at any rate it's easy enough to measure your own temperature on waking.

If it's more like 36 than 37, suspect some sort of metabolic slowdown.

Anyway:

Identity of symptoms

Hypothyroidism is a notoriously polymorphic disease. It's a general collapse of the metabolism, caused by a failure of the hormonal signal that tells everything what speed to run at.

It produces literally hundreds of symptoms, seemingly at random. And it's paradoxical. It can produce weight gain, and weight loss; high heart rate, and low heart rate; anxiety, and depression; etc and etc. As all your systems fail at once, the results are unpredictable.

Anyone with chronic fatigue, fibromyalgia, depression, IBS or any of the other Central Sensitivity Syndromes might want to look at this list, http://www.stopthethyroidmadness.com/long-and-pathetic/, and see how many of those symptoms they themselves have. The overlap is often staggering.

Mild hypothyroidism sometimes looks just like CFS, which is also rather a polymorphic disease. It's not possible to tell them apart by symptoms, which is why, in order to get a CFS diagnosis, you have to rule out hypothyroidism.

But actually, the four syndromes CFS, Fibromyalgia, Depression, and IBS all have the same long list of symptoms in a different order. Mild hypothyroidism could look like any of them.

I think this shows that these syndromes are themselves some sort of general metabolic failure.

In fact I think that they're all different aspects of the same thing, and which label you get depends on what your primary complaint is, and which doctor you initially go and see.

The only reason to think that they're not hypothyroidism, is that the test for hypothyroidism (the TSH test) says they're not.

The accuracy of the TSH test is pretty much an article of faith in medicine. But there are several good reasons to believe that it's not that good a test.

Thyroid Patient Unhappiness

Thyroid patient groups are extremely unhappy with the treatment of hypothyroidism. In the 1960s the disease was diagnosed by symptoms, and treated using desiccated thyroid, raising the dose until the symptoms went away. The doctors of the time seem to have thought that it was 'as perfect as anything in medicine ever gets'.

Around 1970, both the diagnosis and treatment were changed. They went from desiccated thyroid to T4 monotherapy, and they decided, on the basis of a very simple model of how things worked, but on no real evidence at all as far as I can tell, that the newly invented TSH test was a perfect detector of hypothyroidism, both for diagnosing it in the first place, and for telling whether you've treated it properly or not.

Ever since, there's been growing unhappiness with thyroid treatment. Estimates range from 'a large majority of patients are perfectly happy with the treatment' to 'around half of patients still have symptoms of the disease, even under treatment'.

And yet the belief in the TSH test amongst doctors seems to have got stronger and stronger over the years.

The Crapness of the TSH test

The TSH (Thyroid Stimulating Hormone) test is the 'gold standard' for testing for hypothyroidism. But there's a long history of arguing about what the 'normal range' is, and the values are strangely distributed. Almost all doctors believe that the test tells you whether you're hypothyroid or not, and yet different medical organisations have different opinions about whether a given test result means 'yes' or 'no'! A test result that would lead immediately to treatment in some places is considered to rule out thyroid problems in others.

There's also good reason to believe that the test doesn't work once you've started messing around adding exogenous hormones, leading to undertreatment if your doctor's trying to get TSH normal rather than to get rid of the symptoms.

But actually, the idea of the TSH test is just ridiculous. The thyroid system is extremely complicated and badly understood. The idea that you can assess the state of the whole system by measuring one thing is just silly. It probably looked like a good idea in 1970, although even then they don't seem to have been very careful about it. But these days it seems more like an unsubstantiated traditional belief.

Imagine if your aeroplane kept crashing, and you took it to the mechanic and asked him if it was OK, and he said "It's fine. I checked the rudder wires and they're normal". And you said "How do you know that all you have to check is the rudder wires?", and he said "Well, whenever an aeroplane is fine, and doesn't crash, we check the rudder wires and they're normal". That's the level of logic involved in "Your TSH is normal, and therefore you can't have a problem with your thyroid system"

Analogy with Diabetes

Diabetes is an endocrine disease, like hypothyroidism. The hormone in question is insulin.

In type I diabetes, the insulin-producing glands fail, much like in hypothyroidism.

In type II diabetes, the insulin levels are fine, but for some unknown reason, the hormone doesn't act.

If you measure insulin levels in a type II diabetic, they're normal or even high. The only reason we know the disease exists is because we can measure blood glucose directly.

As far as I can tell, no-one's ever checked whether there's a resistance version of hypothyroidism. It would explain an awful lot if there were! The problem is that there's no way to directly measure whether the hormones in the blood are actually acting or not.

There are rare resistance versions of all the endocrine diseases, including hypothyroidism, but type II diabetes is common.

Resistance versions of hypothyroidism certainly exist, but is type II hypothyroidism common or rare? Nobody knows.

History

If CFS existed before the thyroid blood tests were invented, then it would have been treated as hypothyroidism.

There wasn't a sub-population of non-responders. They thought it was as perfect as medicine ever got. In fact the treatment of hypothyroidism (by symptoms, with thyroid extract) in the 1950s seems to have been much more satisfactory than treatment today (by blood test, with T4 only).

There was a disease called neurasthenia once, which might have been what the Victorians called CFS. It gets mentioned in a lot of books about CFS.

It seems to have disappeared around the time that the cure for hypothyroidism was discovered, and come back in the 1970s, when the diagnosis of hypothyroidism changed from 'by symptoms' to 'by blood test'.

I think this shows that whatever CFS is, thyroid hormones must be a good palliative for it.

The alternative is to believe that this mysterious thing that looks just like hypothyroidism coincidentally ceased to exist in 1890 and then came back in 1970.

Argument from Depression

One of the mysterious syndromes that looks just like hypothyroidism is the Major Depressive Disorder. This is thought to be a psychological disease, and treated by psychiatrists. But although depression, lethargy, and anhedonia are the usual main complaints, there are also lots of physical symptoms too. The psychiatrists think that these are psychosomatic.

Psychiatrists have always known that depression responds to thyroid hormones, but they've been much slower to abandon the idea of treating it with thyroid just because of normal TSH.

These days, they use anti-depressants first, and then, if the patients don't get better, they sometimes use various thyroid hormones as well.

They have some story about 'potentiating the antidepressants'.

Gordon Skinner

Gordon Skinner was a British doctor who was trained in the days when you diagnosed and treated hypothyroidism by symptoms and all the tests were unreliable.

He was very suspicious of the TSH test, arguing that it had never been carefully checked. He treated people who had a good picture of hypothyroidism regardless of TSH, and published an open trial where he took 130 people who looked hypothyroid to him, but had normal blood values, and treated them with thyroxine. They almost all got better, and most were very much improved. Roughly 100 of these people had previously been diagnosed with CFS, 30 with depression, and a few others with scattered other diagnoses.

Anne Pollock

Anne Pollock was a Scottish GP who heard about Skinner's paper, and bravely organised a placebo controlled randomised trial of thyroxine in people who showed symptoms of hypothyroidism. It was published in the British Medical Journal.

She thought it had failed, and her trial was taken as a refutation of Skinner's open trial.

But what she actually showed was that healthy people really don't like thyroxine. It makes them feel ill.

And she also showed that her patient group, on average, couldn't tell the difference between thyroxine and placebo.

The problem with her trial was that she didn't do the careful clinical diagnosis of hypothyroidism that Skinner had done. You could have got into her patient group if you had trouble with your weight, and had dry hair and skin. That's not nearly good enough to say 'clinical picture of hypothyroidism'.

What I think must have happened is that she got some hypothyroid-with-normal-TSH people, and some people who had various other problems (there are lots), and so some of the people she treated got better, but some of them got worse, like the healthy controls. And so on average there wasn't much of an effect.

But you can see in the paper that there was something strange going on.

I think she not only proved that Skinner's idea worked, she actually proved that the problem Skinner was treating is widespread!

John Lowe

John Lowe was an American chiropractor who treated 'myofascial pain disorder'. He noticed that hypothyroid people who came to him complaining of pain seemed to have exactly the same pattern of symptoms as people with Fibromyalgia.

So he decided to try treating them with thyroid hormones, and it worked. He spent the rest of his life researching the connection, and set up the Fibromyalgia Research Foundation.

He made a huge list of symptoms which are found in both FMS and hypothyroidism, establishing an extraordinary similarity between the two diseases.

He wrote a huge and very detailed and well-referenced book, "The Metabolic Treatment of Fibromyalgia", as well as a self-help book "Your guide to metabolic health".

He also did a number of experiments. The only one where I've managed to get a copy of the whole paper shows that low temperatures and low basal metabolic rates are found in fibromyalgia sufferers.

He also did proper randomised controlled trials of his treatment methods. I've seen the abstracts of them, and they make strong claims. But I've never managed to get copies of the actual papers.

John Lowe thought that 1/4 of his fibromyalgia patients had ordinary hypothyroidism, but the diagnosis had been missed. He just treated that with desiccated thyroid and it got better.

He thought that 1/2 of them had 'central hypothyroidism', where the control system has failed, so the TSH test is normal but you don't produce enough of the hormones. He treated that with desiccated thyroid as well, and it got better too.

And he thought that 1/4 of them had a 'resistance version', where desiccated thyroid didn't make any difference. In those people he tried giving large doses of the hormone T3, raising the dose until he got a response. Those people got better too.

Kenneth Blanchard

Kenneth Blanchard is an endocrinologist in the United States. He's very suspicious of the TSH test, and has called it 'the greatest mistake in medical history'.

He's practised unconventionally for many years, treating people with symptoms regardless of their TSH value, and making those symptoms go away.

He's published a couple of books about it. The one I've read is 'The Functional Approach To Hypothyroidism'. He's not big on theory, he just claims it works really well and he has a very great number of satisfied patients to back him up.

Jacob Tietelbaum

Jacob Tietelbaum is an American doctor who thinks that CFS and Fibromyalgia are essentially the same thing, and who's tried treating them on the assumption that they are a general failure of the endocrine control system, combined with various possible infections and other problems, and treating each patient with many different drugs and hormones according to their symptoms.

He did a nice randomised controlled trial of his methods, and his results were spectacularly good.

John Lowe pointed out that no-one in his trial had got better without thyroid hormone.

I'm not really sure what to think about this. I have a feeling that whatever's wrong with the thyroid system is the primary problem, and all the other horrible things that happen are due to that. They will clear up on their own eventually, once you fix the thryoid issues, but it probably helps the patient a lot to treat all the symptoms.

Broda Barnes

Broda Barnes was an American endocrinologist (in fact an endocrinology teacher) who practised in the middle of the twentieth century. At the time the best test for hypothyroidism was to measure the basal metabolism of the patient. (Slow metabolism is arguably the characteristic symptom of hypothyroidism, but measuring the basal metabolism is very difficult and error prone) Dr Barnes decided, for good reasons, that it was better to measure the patient's temperature when they woke up in the morning.

He slowly became convinced that hypothyroidism was extremely widespread, and the cause of an enormous number of otherwise inexplicable ailments. He seems to have given desiccated thyroid to a vast number of his patients, on the basis of their low waking temperatures.

He kept very careful records of his patients, and they showed that his patient group was much healthier than the population at large. That's a remarkable claim given that they were all ill when they first came to see him. He even claimed that there was a connection between thyroid treatment and the prevention of heart attacks and diabetes, and he wrote several books about it, in particular 'Hypothyroidism: The Unsuspected Illness'.

He lived in an era when people weren't so concerned with proper trials of medical treatments, and so he's left us very little solid evidence that anything he said was true. His books are mostly just anecdotes and statistics and descriptions of his patient group.

I really don't know what to think about Broda Barnes. He might just have been a lunatic, deluded by confirmation bias and the placebo effect. I certainly thought so when I first heard of him. But actually, I've seen enough evidence that he was at least partially right, that I'm tempted to think that he might really have been on to something.

Sarah Myhill

Sarah Myhill is an English doctor who treats Chronic Fatigue Syndrome. She's a hero to her patients, and considered a bit of a quack by the medical establishment. In my opinion she's a real scientist, trying different things to see if they work, and a good doctor, trying to do what she thinks is best for her patients.

She's published an absolutely terrific paper which seems to prove beyond doubt that Chronic Fatigue patients have dysfunctional mitochondria.

The reason that this is relevant is that the action of the thyroid hormones is to stimulate the mitochondria.

She's also said "Any CFS diagnosis could be a diagnosis of hypothyroidism". But it seems that she can't quite bring herself to give thyroid hormones to people with normal TSH values.

Wilson's Syndrome

There are apparently quite a lot of doctors (hundreds apparently!) in the USA who believe in something called Wilson's Low Temperature Syndrome, despite very little supporting evidence. They seem to be persecuted for it by various state medical boards, with whom I have some sympathy.

What they actually do is to take people with a certain set of symptoms, which look very like hypothyroidism, and treat them with T3. They not only claim that it works, they claim that they can cure it!

I wouldn't go anywhere near one of these doctors myself.

They're using the wrong hormones, their theory makes no sense, and I'd be very surprised if they can actually cure the problem.

But I do wonder if they're seeing exactly the problem that I'm talking about, and treating it in a way that might work, even if it's not the best way.

Argument from Adrenal Fatigue

The adrenal system is another endocrine system which seems to be in control of short term energy balance (the fight or flight response, stress), in much the same way as the function of the thyroid system seems to be to control how much energy is consumed when at rest.

It's been pointed out many times that some of the symptoms of CFS are quite like the symptoms of adrenal insufficiency, and that the adrenal axis seems to be measurably disturbed in CFS. This has led to an alternative medicine tradition of diagnosing and treating 'adrenal fatigue'. The idea is that the adrenal glands somehow 'get tired', and can't produce enough of their hormones. This idea is, to say the least, rather controversial, and I don't think there's much evidence for it, but I haven't paid it that much attention.

But one of the effects of hypothyroidism is to screw up the adrenal glands. (they need thyroid hormone to function at all, but if the body is in a state of torpor, they can be overactive to compensate).

It might be just that that's going on, or it might be that there's a hormone resistance thing going on here too.

Some of the people who treat hypothyroidism claim that you need to sort out the adrenal problems too, and some of them claim that if you fix the thyroid system slowly and carefully, the adrenal system will calm down and behave normally as well.

Billewicz Test

Billewicz was an endocrinologist who came up with a test to diagnose hypothyroidism on clinical grounds. It was the last word in diagnosis before the invention and popularisation of the TSH test.

He's got a list of symptoms and signs, which the patient may or may not have.

For each feature that you have, you get a positive score, and for each one that's missing, you score negative.

The final total will be somewhere between -50 and +50.

If you score really low, then you're not hypothyroid. If you score really high, then you're definitely hypothyroid.

Machine Learning people will recognise a 'Naive Bayesian Classifier', before there were machines to learn!

Billewicz calibrated his test by 'therapeutic trial', and his definition of hypothyroidism was pretty much 'do you get better if I give you thyroxine'.

A high score made it a racing certainty that you would, and a low score made it a certainty that you wouldn't. Somewhere in between, he says 'Beats me, try it carefully and see if it works'.

Lots of people with CFS score high on that test!

Zulewski

No one's looked at clinical diagnosis of hypothyroidism for a long time, but a few years ago, Zulewski et al tried to recalibrate the Billewicz test in the light of modern thyroid treatment.

They came up with a new score, but they then refused to endorse it because it didn't correlate with TSH!

One man's modus ponens is another man's modus tollens.

They say 'We can't use this because it finds the disease where TSH doesn't'.

I say 'This proves TSH doesn't find all cases of the disease'.

Given that Naviaux has been talking about CFS as hypometabolism, and has been doing some of the most robust research on CFS, I wonder if anybody has tried to find the links between his model of purinergic signalling being disrupted, and thyroid issues. Also curious about how these two connect to mast cells. I haven't had the energy to look into this stuff for awhile but I think it's possibly a promising area. Dumping some links in case anybody is curious/wants to follow up.

the leading theory on cfs/me now is by robert naviaux. IT's an idea that CFS is an illness state caused by an initial response to a pathogen causing purinergic signalling to be switched on, and never get switched off.http://www.pnas.org/content/113/37/E5472

I've started to find a little evidence for purinergic signalling crossing over with thyroid issues, which is not surprising, as purinergic signalling is very important for intracellular signalling across a number of physiological systems

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3944044/

search and you may find more... i'm very tired

https://www.hindawi.com/journals/jtr/2013/434727/

I just received lab results showing that I have low t4(.7 out of 1.46), low testosterone(279 out of 1100), low free testosterone(5.3 out of 26.5) and low vitamin d(28.3 out of 100)

I have experienced manic episodes, am currently going through a depressive episode, have leaky gut syndrome, and possible chronic fatigue syndrome. Psychomotor retardation and psychomotor agitation are currently affecting me also. Extremely high anxiety all the time now. Constantly feeling offended/sensitive to everything.

Basically my life is not fun to live from the inside looking out.

I have an appt with an endocrinologist soon, and i was just wondering if anyone has any suggestions.

I also have severe insomnia to where i am forced to take 3.5 mg remeron just to get a full nights sleep without waking to urinate/not getting back to sleep.

My life is basically try to go to sleep, force myself out of bed, depressed mood, no energy to even hold a conversation properly, rinse, repeat.

Current supplements I’m taking:— One a day multivitamin Omega 3 fish oil Betaine hcl Pure probiotic Vitamin E Iodine 600mcg Tyrosene 1000mg

Hello!

My name is Cody Clemens and I am a doctoral candidate at Bowling Green State University (Bowling Green, OH, USA) in their School of Media & Communication. For my dissertation, I am interested in hearing stories and experiences from individuals who are living with Hashimoto’s Thyroiditis.

As someone living with Hashimoto’s myself, I understand the daily struggles. I am doing this research to hopefully better improve how we communicate about and view Hashimoto’s. In this study, I seek to (a) listen to the experiences and personal stories of individuals living with Hashimoto’s and (b) better understand how individuals living with Hashimoto’s communicate about their identity.

Any person who has been diagnosed with Hashimoto’s Thyroiditis 18 years of age or older may participate. Participation will last for 60-90 minutes and it will consist of answering a series of interview questions and completing a short demographics questionnaire. As an optional component, I will also ask if you are interested in participating in an electronic journal experience for 30 days. Please know you will be assigned a pseudonym (or fake name) for the study so, your identity will be protected. I have already had some terrific conversations with individuals from Reddit but I would love to have a few more. I am open to talking to anyone but I could still use a few more men for my study.

If you are interested in participating, please contact me by email at cmcleme@bgsu.edu. Also, I am happy to answer any questions you may have about the study or send you the informed consent forms to read over. Unfortunately, I am unable to compensate participants but please know I greatly appreciate your time. The interviews that I have conducted thus far have been terrific and I have really enjoyed the conversations I have had.

Thank you in advance for considering!

I would like to hear stories from people who've tried thyroid drugs to cure mysterious syndromes like CFS/FMS/Major Depression/IBS that look awfully like mild hypothyroidism.

The ideal is to comment here with details of your current symptoms, including the onset pattern, and what you are about to attempt, and then to report back a couple of weeks later with what happened. I'll call these 'pre-registered anecdotes'.

But I'm also interested in the experiences of people who tried it in the past. And I'll keep scores for both categories here.

Example Before

Hi, I'm a 32-year old female, I got CFS after a viral illness from which I never properly recovered. I've got 90% of the symptoms on Stop the Thyroid Madness' list. I score +30 on the Billewicz test, and my waking temperature (measured very carefully after reading the guidelines) averages 36.1C/97F.

I have been to the doctor, and he tested my TSH at 2.51 with a reference range of 0.3-5.5. As a result he assures me that I do not have a thyroid problem.

I intend to try fixing it with 1grain/day of desiccated thyroid (Thi-royd off Amazon), and will report back in two weeks time.

Example After

I've been taking 1grain/day NDT for two weeks and it just made my fatigue worse. My waking temperature is now 39C I'm shaking uncontrollably and I've had three heart attacks. UR RETARD AND THIS IS ALL RUBBISH. DONT TRY IT!!!

Summary so far

(from this and the previous post https://www.reddit.com/r/thethyroidmadness/comments/59ubhr/anecdotal_evidence_wanted/, now archived)

pre-registered (2 tries, one fail, one ambiguous)

u/SchodingersDingaling Apparently classic case, don't have details, tried NDT to no effect, tried T3 up to 150mcg/day. Slight rise in heart rate, blood pressure, appetite and serious weight gain. No other effect. [Edit: Although apparently after a year of experimenting he tried T4 only and made a spectacular recovery! I am at a loss to explain this and wonder if it's just coincidence]

u/rfugger

Classic case of CFS apparently caused by a flu-like illness, tried both T4 and NDT, got a small boost, some unpleasant hyper-type side effects despite the moderate dose, and decided it wasn't worthwhile.

after the fact (2 successes and one fail)

u/Archetypa Diagnosed CFS and started natural thyroid hormone 2 months ago with no change so far.

u/wcstone Seems to have had the same experience as me. Symptoms but normal blood tests, NDT makes him feel better.

u/Discochickens Diagnosed with depression, 10 years of anti-depressants, diagnosed thyroid with a TSH of 6, given NDT, 12 weeks of NDT fixed the "depression" too.

[P.S. u/SchrodingersDingaling and u/rfugger count as pre-registered since they told me what they were going to try before trying it.]

I am doing some research for my college degree in psychology and am studying the psychological well being of people with hypothyroidism and their medical adherence. It would mean a lot to me if anyone who has hypothyroidism can fill this out please. It's really hard to find people willing to take the time out so I will be eternally grateful. Thank you! https://docs.google.com/forms/d/e/1FAIpQLSc_xMvgoWMC_EvAqvAaMqTyIM_I-0WBcVgSlSNYr2ob3UpWKQ/viewform?usp=sf_link

In 2014 I had a thyroid goiter, which was removed surgically. It was really difficult for me and finding the right medication took time. Even with the meds I never felt completely fine.

About a year ago I quit eating medicine and started controlling my hypothyroidism with my diet. 2 months ago my thyroid hormone levels were in balance. I'm now healed.

I know many are suffering because of hypothyroidism, so I wanted to start this video series on my youtube channel, where I share my journey and give hints and tips to cure Hypothyroidism naturally. I'm not an expert, but as a fellow "patient" (I hate that word. I don't want to label myself as a patient), I want to be there to support all those, who are still suffering from Hypothyroidism.

I gained some 30 kilos after my surgery, so I will also start a fitness journey. Here's my first video on this topic:

https://www.youtube.com/watch?v=9zb0NeI2K5M&t