T3 Monotherapy for ME/CFS or FM?

[GlassCannonLife]

Hi all,

I was hoping to get your thoughts on T3 monotherapy and it's use in treating both ME/CFS and fibromyalgia.

I was reading this article over a year ago and it sort of slipped my mind in the last months.

It is: Pure T3 Thyroid and Stories of Recovery from Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: An Overview.

It's from the health rising blog, and covers a number of approaches from various clinicians. The general idea is that they believe hypothyroidism can emerge in individuals after high stress events (of whatever type), and this can manifest essentially as either ME/CFS or FM.

There are apparently many success stories of people slowly titrating up T3 dosage from physiological levels up to potentially very high levels (175 - 400 ug daily, normal replacement 20 - 30 ug daily). These people apparently just continuously improve and do not exhibit signs of hyperthyroidism despite the high doses, due to theoretical receptor insensitivities (detail on this presented in the article).

Once they reach their high maintenance dose, they are apparently in remission, with symptoms gradually improving as they titrate up. The doctors vary in their approach of duration of therapy (some do a very short "kick-start", some do it for 1-2 years until full recovery) and ancillary support (eg adrenal support, some T4 to allow T2 conversion, B12 administration, etc).

Have any of you heard of or tried this?

Sorry to tag directly but I hope some of you may have an idea about this. Anyone else of course feel free to respond.

@Hip @Learner1 @thingsvarious @mitoMAN @Pyrrhus

 

[godlovesatrier]

Hey Glass.

It definitely helps some people because I remember them mentioning it before. Did you take this once before @Mary ?

I haven't ever tried it myself but my thyroid was always ok.

All the best with it!

 

[GlassCannonLife]

Hey Glass.

It definitely helps some people because I remember them mentioning it before. Did you take this once before @Mary ?

I haven't ever tried it myself but my thyroid was always ok.

All the best with it!

Thanks man, yeah I've also never tried it as my bloods look perfect.

The theory is though that it can help you even with "ideal" blood levels because that doesn't reflect issues with receptors etc.. Not sure if it's just another fringe theory or not but it seems quite interesting.

Hopefully someone on here has had some experience with it.

 

[Hip]

Around 1 in 6 ME/CFS patients suffer from low T3 syndrome, in which levels of the thyroid hormone triiodothyronine (T3) are low, and levels of reverse T3 are high, even though levels of thyroid stimulating hormone (TSH) are normal. Ref: 1 This represents a subclinical hypothyroidism, which may exacerbate ME/CFS symptoms, but may not be detected by regular thyroid hormone testing, which usually only checks TSH and thyroxine (T4).

Comprehensive thyroid hormone test. A comprehensive thyroid test which includes TSH, free T4, free T3 and ideally reverse T3 can detect low T3 syndrome. The Genova Diagnostics Comprehensive Thyroid Assessment is an example of such a comprehensive test.

Low T3 syndrome treatments. If you have subclinically low T3, the study which first identified low T3 syndrome in ME/CFS patients suggests that taking supplemental T3 as the drug liothyronine as well as supplemental iodine might be helpful (though the authors state that their study first needs confirmation). Dr Kent Holtorf specializes in treating hormonal irregularities in ME/CFS, and has a theory on why T3 can be low in ME/CFS.

Source: here

 

[Wishful]

I didn't notice any benefits from supplemental T4 or T3 (pig thyroid), but I got a strong improvement from T2. I think it's a case of very specific problems that can be successfully treated by things that don't work for people in general.

 

[GlassCannonLife]

Source: here

Thanks Hip, however, part of the idea here is that you try the therapy even if you have all normal bloods (including T3 levels being in range).

 

[Judee]

I tried Wilson's Temperature version but I only had a small bottle of T3 in the house and many of the "natural thyroid" doctors I contacted were not open to his protocol so I didn't continue with it for that reason as well as the scheduling being difficult and my heart's response.

I still tried it with micro doses. ME patient's are super sensitive to medications anyway.

Positives:

-I did feel better but in the similar way to when I take mega doses of vitamin D (w/K2 and C). (Coimbra protocol although I don't think he allows the K2.)
-My MCS (multiple chemical sensitivities resolved for that time). My smell was still super sensitive but even though I could smell someone's strong perfume in the chiropractor's office, it didn't make me feel ill at all.
-My low temperatures did start to improve.

Negatives:
-These meds always seem to make my heart hurt with a resulting "heart tiredness." I think they rev us up and then we can crash more.

I got the same "heart tiredness" years before when my environmental doctor put me on natural desiccated thyroid. He had me titrating up each week and by week three I realized that I'd been more "heart tired" (which still translates into worsening of the fatigue) since the first week.

I have also been interested in Paul Robinson's T3 circadian program but don't want to spend the money on his book if it ends up being another dead end.

This guy (attached file) also had some thoughts on improving our health by increasing our temps. (Though he's not an ME patient nor a doctor but he had some interesting theories.)

Edit: Yikes. I didn't realize he rambles so much in that document. Sorry about that.

http://www.fixlowbodytemp.com/

 

[Hip]

Thanks Hip, however, part of the idea here is that you try the therapy even if you have all normal bloods (including T3 levels being in range).

Ah right, I did not read your post carefully enough.

There are apparently many success stories of people slowly titrating up T3 dosage from physiological levels up to potentially very high levels (175 - 400 ug daily, normal replacement 20 - 30 ug daily). These people apparently just continuously improve and do not exhibit signs of hyperthyroidism despite the high doses, due to theoretical receptor insensitivities (detail on this presented in the article).

Does it say that in Cort's article?

 

[GlassCannonLife]

Thanks @Judee I'll take a look!

@Hip which part? They mention a few different doctors treating with varied protocols and dosages, only one man is mentioned to go up to 400 ug but I included that for completeness.

They don't directly list people with positive outcomes but give the impression that there is a clear number of people improving/responding to the therapies.

I might grab some quotes from the article if that is more helpful.

 

[GlassCannonLife]

@Hip this one is particularly relevant to us it seems, as Dr Lowe (the first one mentioned) mainly treated FM (with success though apparently).

Sorry to quote the full section on Dr Skinner but it is all quite fascinating.

The late Dr GRB Skinner was a virologist who authored nearly one hundred journal publications on herpes and other viruses. CFS/ME patients kept getting referred to him by their General Practitioners because of the belief that CFS/ME was initiated and maintained by a chronic virus infection. His insight was that the reason patients don’t recover from an infection is not because the infection becomes chronic, but because the patient becomes hypothyroid as a result of the infection. Dr Sarah Myhill credits Dr. Skinner with pioneering thyroid treatment for post-viral CFS/ME patients.

In his book Diagnosis and Management of Hypothyroidism (2003) Dr Skinner writes that viral infection, food poisoning, childbirth, physical trauma, etc. can be “precipitating causes” for hypothyroidism. He strongly believed that diagnosis of hypothyroidism should be made on clinical grounds (i.e. the patient’s history and physical symptoms) because “a ‘normal’ laboratory test doesn’t say a disease isn’t present.”

Indeed, according to Dr Skinner, the “simple-minded reliance on laboratory tests” – combined with the great diversity of clinical manifestations of hypothyroidism – has unfortunately led to a vast under-diagnosis of the illness. With reference to doctors’ manuals from an era prior to the use of thyroid blood tests (and using his warm Scottish humor), Dr Skinner spends a long chapter of his book describing the clinical features of hypothyroidism – which include lack of whole body stamina, being bed bound, loss of muscle power in arms and legs, inability to chew, cognitive difficulties, “intolerance to all things great and small,” carpal tunnel syndrome, intestinal fermentation (relating to muscle weakness of the intestinal tract), food intolerances, local tenderness in muscles, intolerance to light and other sensory disturbances, etc.

Notably, he debunks the myths that a patient who has lost, rather than gained, weight, or has diarrhea (rather than constipation) or feels hot (rather than cold), cannot be hypothyroid; in fact, that person may very well be hypothyroid.

In terms of treatment, he writes that the type of thyroid “replacement preparation, the dosage and rate of increase of a dosage for a given patient” is “almost an art form.” He used many forms of thyroid hormone, including pure T3. He writes that most patients do better on natural thyroid than T4, and that “the provision of T3 alone does not always do the job” (perhaps because the T2 in natural thyroid plays some as yet unknown important function).

Patients also responded better to thyroid hormone when taking high doses of B-12 vitamin. He found that in most cases, thyroid hormone cured low function of the adrenal glands, but sometimes he accompanied his thyroid treatments with adrenal support to allow the adrenal glands to meet the demand of improved thyroid functions (often 2.5 – 5 mg of prednisolone).

Skinner writes that non-responses to thyroid treatment often occur when prescribed thyroid hormone dosages are too low due to a “preconceived notion of a correct or safe dosage.” He surmised that initial side effects from thyroid treatment, such as palpitations, arose because thyroid receptors may have “atrophied” and the supplemented thyroid hormone gets “backed-up.” This is remedied by reducing the medication for a while and perhaps lowering the rate of increase. He wrote that it may take 1 or 2 years for patients to become well. Amazingly, he describes an international athlete whom he diagnosed with hypothyroidism and hypoadrenalism, who later self-increased his dosage of pure T3 to 400 mcg per day. He calls this self-medication “an ill-advised procedure at these levels,” but points out that “something is happening” that merits further research.

I wish Dr Skinner had entitled his book “Diagnosis and Management of post-viral CFS/ME” – I believe that would have been a more fitting title, and the book would have gotten more attention by the CFS/ME community. The UK General Medical Council opened several hearings against Dr Skinner for his stance on prescribing thyroid hormones. After his death in 2013, many of the patients whom he had helped get their lives back described their recoveries and expressed their thankfulness on healthunlocked.com (UK) and other forums.

The protocol @Judee mentioned was developed by Dr Wilson to treat what he called "Wilson's Temperature Syndrome". He did a kick-start style of approach as follows:

The basic treatment Wilson provides (effective, he asserts, for 80% of the patients) is a starting dosage of 7.5 mcg “sustained release” T3 every 12 hours (i.e. 15 mcg per day on day 1) increased by an additional 7.5 mcg twice per day every day (i.e. after 10 days, the patient is taking 75 mcg every 12 hours; so 150 mcg per day). After just a few days on the highest dosage (max 90 mcg every 12 hours; so 180 mcg per day), the patient is weaned off T3 by subtracting 7.5 mcg off each dose every 2 or 3 days. The basic cycle, therefore, lasts about 1 month.

Patients monitor their pulse and look for palpitations (and are prescribed a little T4 to steady pulse and palpitations if needed). Wilson also provides adrenal support such as hydrocortisone or herbal supplements. After each cycle, patients measure their body temperature for a few days to determine if it is steady.

Cycles are repeated, and the maximum dosage is adjusted as needed so that the body’s system of T4 to T3 conversion re-establishes itself and the patient feels well again. Unfortunately, the longer the patient has been sick, the more difficult it is to get the natural system to establish itself again. His cycling protocol makes for fascinating reading, and is described in detail in the free e-books on his website. A journal paper from 2006 describes a successful application of the protocol with 11 CFS patients (Friedman, 2006).

Dr Holtorf is also mentioned, with the following being a brief summary:

Similar to Dr Wilson, Dr Holtorf prefers to use compounded “timed-release T3”, but just once per day. Following in Dr Lowe’s path, Dr Holtorf also advises his patients to build up to supra-physiologic dosages over time (100 mcg or more) based on clinical symptoms and an optimal RT3 to T3 ratio – as measured by blood tests. Dr Kent Holtorf’s approach to treating CFS and FMS further includes enhancing mitochondrial function, balancing other hormones, and treating infections. His approach is also explained by Cort in this article.

I think the RT3/T3 ratio has been disproven as a predictive indicator of issues in the past, however, and has been debunked in a very detailed manner on thyroidpatients.ca, as for example in this article.



Brief info on Dr Peatfield's approach:

Regarding treatments for low thyroid function, Dr Durrant Peatfield, like Dr Skinner, generally prefers treatments with natural thyroid, but indicates that “severe cases” may only respond to T3 due to problems in T4 – T3 conversion. He describes starting with 10 mcg of T3 and increasing every 5 days or so by10 mcg based on careful clinical observations (he provides no maximum dosage in his book). With time, he writes, the T4 to T3 conversion problem may subside, and it may be possible to introduce T4 for some patients. He emphasizes the importance of a flexible approach, as long as symptoms are monitored.

He prescribes adrenal glandulars or physiological levels of hydrocortisone ahead of thyroid treatments. Additional elements of his treatment protocol, described in great detail in his book, include balancing other hormones (DHEA, oestrogene and progesterone), eliminating candida, healing the gut, liver detoxification, and improving nutritional status through vitamins, minerals, and EPA (e.g. primrose oils).

There is also info on Dr Myhill's approach:

in addition to following a strict ketogenic diet, one of her patients required 180 mcg of T3 to “recover completely from her CFS.” Interestingly, this is the only specific example of complete recovery described in her book.

Dr Myhill’s treatment plan for T3 is a starting dose of 10 mcg split into 3 doses over the course of the day, and increased over time. She refers readers to Paul Robinson’s book for further detail on a trial with T3 (see below).

In addition to the treatment of low thyroid function as described above, Dr Myhill offers the interesting hypothesis that there may be a need to “kick-start” the brain out of “safe mode” into “normal function mode.” She cites Dr John Kaiser: “I believe it is reasonable to imagine very sick mitochondria being stuck in a dysfunctional mode similar to a heart muscle that is fibrillating,” and requiring a “kick-start” to get out of this mode.

In order to affect this “kick-start,” she proposes – as long as all other treatment options are in place – trials of pure T3 (“20 – 60 mcg, possibly more”) or natural thyroid (“1 – 3 grains, possibly more”), or alternatively Ritalin or Provigil. This allusion to “kick-starting” or moving from one metabolic state to another (or from a “vicious” to “virtuous cycle”) echoes the hypothesis of Dr Wilson.

There are two other doctors mentioned but I won't quote those to not make this post too long. Overall, there are clear similarities between the approaches and all seem to report some fraction (often sizable) of positive response from patients. The "reset" aspect of this all made me think of @thingsvarious ' journey with hormonal replacement and his clear HPA reset after long term hydrocortisone and thyroid hormone supplementation.

 

[GlassCannonLife]

I didn't notice any benefits from supplemental T4 or T3 (pig thyroid), but I got a strong improvement from T2. I think it's a case of very specific problems that can be successfully treated by things that don't work for people in general.

That's very interesting - I've heard of people taking T2 in the past but didn't find it very accessible. Do you mind sharing what product you used, what dosage you took, the duration of treatment (still ongoing?), and your overall response (eg level of improvement on a functional scale or something similar?)

Thank you very much!

 

[heapsreal]

I recall reading that if one feels worse on t3 than it may be adrenal dysfunction at the core. It was then mentioned as a possible trial of hydrocortisone the typical 5mg x 4 times a day.

 

[Mary]

Did you take this once before @Mary ?

No, I didn't. I do take dessicated thyroid though, I have for over 20 years. I hadn't heard of T3 monotherapy until I saw this thread!

 

[Wishful]

Do you mind sharing what product you used, what dosage you took, the duration of treatment (still ongoing?), and your overall response (eg level of improvement on a functional scale or something similar?)

It was San Thyrocuts, but that's no longer available. There was a similar product on Amazon last time I checked. Just search for: '3-5 diiodothyronine'. 100 mcg worked for me. The first few times it gave me full remission for the rest of the day. That lost effectiveness, and I ended up taking one capsule every 21 days. Taking it more often, or taking more, gave no more benefit. Taking it daily made it stop working, and then I felt extra lousy when I stopped taking it, in a reverse of the benefits and time (I assume due to T2 reducing my own T2 production). If I forgot to take it on time, I'd feel really lousy again, check my journal, and see that it was 21 days since my last dose. Very consistent.

Supplemental iodine had the same effect on me; a small drop of tincture of iodine was enough. I assume that it was increasing my gland's production of T2. Surprisingly, supplemental T4 and T3 did not provide this effect despite their iodine content. I first noticed iodine's beneficial effects from a multivitamin/mineral tablet, which was 150 mcg. The iodine was much simpler to acquire (I already had it for cuts), so when I couldn't find a source for T2, I just switched to iodine.

If you try it and it does work for you, please let me know. Other people have tried T2 and not noticed an effect. I have several other unique responses to treatments and other factors, so the T2 response might be unique to me.

BTW, if you search PR for '3-5 diiodothyronine', you'll find several earlier threads where I've mentioned it.

 

[Learner1]

@GlassCannonLife I'm familiar with all of the above theories as I have looked into them being a Hashimoto's patient for 13 years.

@Mary My doctor started me on T3 only as I had a very high reverse T3 which dropped overtime with the treatment. 3 years ago, I started adding in T4, and have taken combo T3 and T4 since. I am unable to take any form of NDT due to allergens and all of them. T4 has allergens as well and the only no allergen FDA approved version, Tirosint, costs a small fortune, so I have it compounded. I find it much easier and cheaper to take the FDA approved version of T3 that I don't have to have compounded.

@GlassCannonLife I am a fan of using a scientific theory to manage thyroid. I have found the Thyroid Patients Canada blog and Facebook group to be incredibly valuable. The leader over there, Tania Sonia Smith, is a researcher who has gotten to the bottom of all of the thyroid research and explains thyroid theory very well.

Interestingly, most thyroid research seems to be done on patients who don't have thyroid problems. They have intact thyroid glands and no autoimmune thyroid disease. Also excluded in the research are ME/CFS patients, although it is known that PWME may have low T3 syndrome.

Testing to see if you do have low T3 syndrome by using a full thyroid panel, free T3, free T4, TSH, reverse T3, TPO antibodies and thyroglobulin antibodies is best to see what's going on. Unfortunately, many doctors only test TSH which is actually a pituitary hormone and tells you nothing about thyroid function and free T4, with the strategy of dosing only T4 if there's a problem. T4 must convert to T3, and not all people do this well, so whose common strategy falls short for many patients. My doctors and I usually manage to my free T3 number, which is best measured before taking any thyroid medicine for the day, between 12 and 18 hours after my last T3 dose.. The reason for this is that T3 will peak right after you take it and then slowly decline to a low level. Many doctors will look at the peak if that's what gets measured and decide you're overdosed, while you fall into oblivion without enough thyroid hormone. Better to test when it's at its lowest.

Some doctors will tell you you're fine if you are in range, but it's very individual, I tend to feel better when my FT3 is at the top of the range.

Taking T3 medication or even NDT can suppress ones TSH. Basically, TSH is produced by the pituitary when the pituitary senses that active thyroid hormone is low. The TSH basically shouts at the thyroid to make more T4 so it can convert to T3. If you have enough T3 because you're taking it, the pituitary will think you have enough T3 and so the TSH will be suppressed. Amazingly, this freaks out a lot of doctors and they think you're hyperthyroid when you really aren't. The Synthroid people did a good job of brainwashing the doctors back around 1980 and thyroid patients everywhere are still suffering from this travesty. The other problem is that whoever in the UK government was tasked with contracting for a price for T3, liothyronine, Did a lousy job and T3 is more expensive than anywhere else in the world by several multiples from anywhere else. So, the UK government, in its wisdom, found the best way to save money on this expensive hormone - refuse to test patients to see if they need it, and refuse to prerscribe it.. Due to this idiocy, most UK patients buy private testing to figure out what their needs are, and many then buy T3 from other countries through the web. Canada is marching just behind, and it is very difficult to get testing there.

T,3 can be quite helpful if one is hypothyroid or even subclinically hypothyroid, including those with Hashimotos or with low T3 syndrome, worthy thyroid is struggling due to chronic stress of infections, etc

Having too much thyroid can be extremely counterproductive, and leave one open to some pretty bad side effects. I am not a fan of Dr Wilson and Dr Lowe just prescribing on a whim too overload people system with T3.

I think it's better to get some decent lab work, including B12, cortisol, iron, iodine, and selenium, all of which are needed for proper production of thyroid hormones, and then to dose depending on what's found.

Besides feeling awful being hypothyroid, one can have hair fall out, weight gain, cardiac problems, high cholesterol, etc being short of free T3, and this state correlates with higher mortality.

T3 and the T3 (3-5 diiodothyronine') it converts to are needed for proper mitochondrial function as well.

 

[GlassCannonLife]

Thank you @Learner1, that's a great post.

I agree with all you are saying regarding standard therapies and health optimisation. I have also found Tania Sonya Smith to be a clear leader in communicating thyroid issues and promoting proactive and complete thyroid health management.

I understand that typically one does not want to "overdose" on thyroid medication, and becoming chronically hyperthyroid can be damaging and dangerous in a number of ways.

However, it seems like these doctors encountered at least some patients (they say a large proportion, but this seems to be the case with every ME/CFS doctor..) who responded positively to a slow increase in supplemental T3, reaching remission in some cases.

Do you believe that this is just all false reporting, unrelated improvements, or some other type of measurement error? The patients purportedly didn't even exhibit any hyperthyroid symptoms during the incremental dosing, and the doctors attribute this to receptor issues.

I'm considering trying one of these therapies, and would likely recommend them if they are helpful, so it's great to be able to build a wider base of discussion on all of this.

 

[Learner1]

However, it seems like these doctors encountered at least some patients (they say a large proportion, but this seems to be the case with every ME/CFS doctor..) who responded positively to a slow increase in supplemental T3, reaching remission in some cases.

Do you believe that this is just all false reporting, unrelated improvements, or some other type of measurement error?

I believe that we are a very heterogeneous group of patients with various groupings of a list of maybe 20-25 issues, hypothyroidism being one. So, it is entirely possible that a few are helped with thyroid hormones.

However, as most of us have immune issues, hidden or known infections, autoimmunity, hypercoagulation, nutrient deficiencies, I'm finding it extremely hard to believe that T3 will treat Epstein Barr, reduce autoimmunity, fix immunodeficiencies, make depleted nutrients replete, restore oxygen to hypoxic tissues, etc.

Though, I do think that tissue distribution of thyroid hormones can differ from what is found in blood, so ensuring all parts of the body (and all mitochondria) have sufficient thyroid hormones is critical to success.

One risk is that speeding up a damaged metabolism could cause bad things to occur faster, like going full throttle in a car with engine problems... I think it's important to understand the various problems we have and use thyroid hormones as one tool in a larger toolbox.

I'm considering trying one of these therapies, and would likely recommend them if they are helpful, so it's great to be able to build a wider base of discussion on all of this.

I think getting full thyroid testing as I mentioned above, as well as full hormone testing is a valuable exercise and can give you insight into how you can optimize function. I've also found supplementing testosterone, DHEA, and hydrocortisone, if deficient, can do a lot to improve function, in addition to thyroid hormones. And NMN or NAD+ and antioxidants.

But I also have found finding and treating HSV2, CMV, HHV6, Epstein-Barr and chlamydia and mycoplasma pneumoniae to be critical in recovering, and I've seen many patients who finally, after years, find that one or more of these is dragging down their energy production due to mitochondrial fragmentation or other mitochondrial issues. I've also seen a lot of people learn of mycotoxins and/or arsenic, lead, or mercury toxicity which can also gum up energy production.

So, unless youve gotten to the bottom of all of these and treated them, I think supplementing thyroid hormones above the dose needed to put you at top of range for FT3 can be risky at worst, and unlikely to cute you.

But that's just my opinion. If you find an explanation of how T2, T3, or T4 cures all of this, it would be worthwhile to know by what mechanism they're curing each of these.

 

[Wishful]

and the T3 (3-5 diiodothyronine')

That's T2, not T3. "Di" = two. Until 1960 or so, T2 was considered inactive, and you know how long it takes for doctors in general to correct that kind of misconception.

 

[GlassCannonLife]

@Learner1 yeah I agree, it seems to be highly theoretical and experimental.. Cort summarises it and a few issues nicely in the following:

I am particularly intrigued by several practitioners’ hypothesis that pure T3 supplementation may serve to “kick-start” metabolic pathways (or break vicious cycles), perhaps related to T4 to T3 conversion, interactions between thyroid hormones and the immune system, mitochondrial function, or the brain. In other words, the “kick-start” model posits that thyroid supplementation could be used to break the body from a homeostasis of illness (i.e. an equilibrium state that is maintained by physiological processes) to a homeostasis of health.

...

Finally, it appears that the ideal treatment mode depends on the individual, and some patients do better on combinations of T3 and T4. This makes me wonder if perhaps CFS/ME and FMS patients who have tried T3, but for whom it has not had a positive impact, have simply not taken it according to a mode suitable for them.

...

I believe this information is often not accessed by CFS/ME and FMS patients because it is labeled as treatment for hypothyroidism (which they have been told they don’t have on account of normal laboratory blood results).

Apart from borderline low normal (right near the cut-off generally) ACTH, cortisol, and DHEA, all of my hormones look great.. I also had thyroid antibodies tested a few months ago and they came back as below the detection limit.

Urinary iodine was mildly low (70 ug/L, should be over 99 ideally apparently). I've since supplemented iodine but didn't notice any change.

I see my endocrinologist in February so I'll see if he is happy to trial some T3 monotherapy to see if it can help in some way.

 

[Wishful]

Urinary iodine was mildly low (70 ug/L, should be over 99 ideally apparently). I've since supplemented iodine but didn't notice any change.

Excess iodine is unlikely to accumulate in the body, and it won't spontaneously transmute into different atoms, so it has to leave somehow, and urine isn't the only exit. I suppose people might differ in how much of a chemical might be excreted through feces or skin instead of urine, which means that standard urine tests are not 100% reliable for everyone.