Okay, so, it has only recently reached my consciousness that the fact that my thyroid "died" (I got a goiter and my TSH was only barely above "normal" so at first they didn't want to treat me even though I gained 30lbs in a month and lost all my body hair and on and on) at the exact same moment (literally) that I obtained my immune deficiency may not be a coincidence.
This happened in 2018 and I've been running fevers about half the time from viral infections (we documented that w/ viral swabs when I got fevers), I told the story of coming extremely close to dying of septic shock and multi-organ system failure from a post-op breast cancer lumpectomy abscess that they claimed was a fluid collection and claimed I did not have an infection (for nearly six weeks) despite the fact that I spiked high fevers (102 or so) twice a day and could tell that I had an infection--because my WBC count never went over 10-- until I was vented with a pump in my heart-- then it finally spiked to 50,000... (it reverted to nl)
But, my point is that the symptoms I've experienced: weight gain (although the nearly dying thing took off a lot of weight), extreme fatigue, brain fog, low immune system (which a huge work up going so far as to fully genetically sequence myself and my parents-- turned up nothing so they said "toxins" and then never checked for toxins), lack of body hair, loss of half my eyebrows, loss of all body odor in my armpits, etc-- could actually all be thyroid.
First, I want to double check with the folks who have really researched this. Is that possible?
Anyway, in response to GreyGoose's recommendation I started taking all of my liothyronine, starting at 50mcg (which is what we calculated I was already taking including the T3 in the NP thyroid, which I stopped taking). And then adding 5mcg and another 5mcg-- taking it all at once, and I tried taking it in the middle of the night, but I was completely exhausted by noon and even my afternoon nap (a necessity since this all started) didn't revive me. So, I moved it to first thing in the morning.
But I'm still getting fevers from a single viron being in the room with me, and I'm still very fatigued, still have brain fog, etc.
It is extremely frustrating that even my super expert immunologist didn't know anything about this and always saw my thyroid problem as barely even a problem--despite very thyroid specific sx like myxedema and loss of body hair, etc. He didn't want to treat me at all at first bc my TSH was only 5 or something.
So 1) should I consider this theory plausible and keep doing whatever I should do to solve my thyroid problem? (my TSH went down with levo, but my symptoms did not improve AT ALL until I started lio. They tried to treat my immune deficiency (which was generalized--low antibody levels of all kinds, lowish T cells, lowish lymphocytes generally & the labs didn't really go with the clinical picture with IVIG (actually subQ) until it almost killed me by allergic reaction & also didn't help).
2) Assuming we want to keep going with trying to improve my fatigue, my immune issues and my brain fog with thyroid, what should I try next? Should I increase the dose I take all at once? Or should I increase the frequency too? Or some combination, like taking 50mcg in the am and then 5 and 5 at lunch and bedtime? Taking it all in the middle of the night definitely left me wiped out all day.
best and thanks to all of you who keep patiently answering questions!
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Blimey, after all that trauma have you investigated your adrenal function and cortisol levels as they must have taken a beating and you need good cortisol levels for the uptake of thyroid hormones
weight gain, extreme fatigue, brain fog, low immune system, lack of body hair, loss of half my eyebrows, loss of all body odor in my armpits, etc-- could actually all be thyroid.
It absolutely could, yes, and more than likely is. It sounds like my symptom list - only I could add a few! And, whilst I've lost some weight and am not as tired as I was, my eyebrows and body hair have never regrown, and - happily - neither has the body odour! In fact, all these symptoms are on just about every symptom list you can read on-line.
1) should I consider this theory plausible and keep doing whatever I should do to solve my thyroid problem? (my TSH went down with levo, but my symptoms did not improve AT ALL until I started lio.
Well, TSH has nothing to do with symptoms directly. TSH doesn't cause symptoms when it's high or low, so not surprising they didn't alter at the same time as the TSH. Taking levo would have appeased the pituitary so it stopped making as much TSH to stimulate the thyroid, but if you weren't converting that T4 to enough T3 then symptoms would persist because it's mainly T3 that causes symptoms when to high or too low.
So, I would say yes, continue what you're doing because improvements are unlikely to happen over-night. And you don't even know if you're on the right dose, yet. 60 mcg is not a high dose for someone on T3 mono-therapy, so you might need more before feeling relief.
2) Assuming we want to keep going with trying to improve my fatigue, my immune issues and my brain fog with thyroid, what should I try next?
If nutrients have all be tested and optimised, the next this is to test cortisol, as TiggerMe says. It wouldn't be at all surprising if your cortisol is low, but you need to know by how much.
Should I increase the dose I take all at once?
The reason I suggested taking it all at once was because from what you said in your last post, it sounded as if you had some degree of Resistance to Thyroid Hormone. And the treatment for that is to take large doses of T3 only all at once. As I've done it myself, I know it works. To begin with I was taking 225 mcg all at once before bed - and I slept like a log! Some 15 years later, I only need 75 mcg (it varies between 50 and 75). But, there is a very good book on this subject on Amazon.com:
So, if all is going well, and you're not feeling over-medicated, I would suggest you continue slowly - very slowly - increasing your dose and taking it all at once. I'm sure you know your body well enough to know if that's not working.
I just read your initial -- or at whatever point you posted it-- description of your health and thyroid journey. Holy *** One thing is that you and I could do an alphabet dance of incompetent doctors for a comedy show.
At the moment, after seeing an endocrinologist who seems to at least have clear in her head what thyroid hormones are, I'm still on 100 mcg of tirosant and 50 mcg of liothyronine (split into two daily doses, which I am fully aware may be the wrong way to do it, but one wants to be cooperative. It will be revealed in the follow up.
But, anyway, just on a personal note it enrages me what you went through, what so many of us have gone through, but that fact that yours goes back to 8 years old and seems to possibly involve multiple hypothalamic/pituitary/end organ systems it just breaks my heart.
I think back to my own residency when I was told "not to worry too much" about people with TSH's below 10 it makes my blood boil. I never followed that rule as I tended to trust what my patients told me (I prescribed NP thyroid all the time if people said they felt better on it--I did not while practicing medicine, and certainly my opinion has not changed now that I am practicing being a patient (ha!), why doctors are so prone to not listen to the words coming out of their patients mouths), but I still did not know nearly enough.
And Endos in the US, I'm sure it is the same in the UK and France, although the US maight be the top of the list for type 2 diabetes, mostly manage diabetes. Thyroid is something they know only in a text book sort of way and seem to have little interest in.
Anyway, after two weeks of antibiotic therapy for the pneumonia that went 5 months untreated, I am still extremely swollen, have the benefit of a blood clot in my internal jugular because of the PICC line the doc left right where it could choose to go up or down and went up, so my whole body is swollen and then my neck and lower face are extra swollen bc the blood can't drain properly.
I'm extremely achy, fatigued, etc. With low exercise tolerance. But for the moment I'm worried about doing any increase on my thyroid hormone bc ever since I got sick in the spring my heart rate has been running around 100. But, it could be that the T4 I'm getting in the tirosant is not only not helping but actually doing harm.
I need to have my B12 checked (chronically anemic, no one even comments on it), and etc. I believe I had a cortisol test done once, but it wouldn't hurt to repeat it.
Anyway, Gray Goose, thank you for everything you do for all of us in this group.
And I wish none of us had to go through any of this! It is palpably absurd to me how primitive is the knowledge of doctors (of all specialties) about thyroid. How incredibly terrified they are to over-treat someone, while undertreating seems to be viewed as having no consequences at all. best.
In the theatrical film, Seabiscuit, at the apex of the drama, the jockey with the shattered leg is preparing to ride the thoroughbred who suffered the ruptured suspensory ligament on its foreleg.
"Will the leg handle it?" asks the owner.
"The horse weighs 1,200 pounds. I'm an afterthought," replies the 112 pound jockey.
When you add 5 mcg in the afternoon and 5 mcg again in the evening, it's but an afterthought, given your condition on the ragged edge of the abyss. We aren't giving medical advice here, so we lean toward extremely conservative suggestions.
However, a meta-analysis of dosing of liothyronine interventions for people on the edge of death in the ICU observed "Very rapidly after the onset of acute stress, such as from myocardial infarction or surgery, serum T3 concentrations decrease. In patients undergoing abdominal surgery, a fall in serum T3 was noted within 2 h after the start of surgery.
" [This syndrome of dire low T3 in the absence of TSH indicators of same] has been reported in patients with acute and chronic illnesses including infectious diseases, cardiovascular and gastrointestinal diseases, cancer, burns, and trauma. Serum T3 further decreases as the severity of disease progresses.”
The survey of treatment protocols revealed a maximum safe dose of 1.2 μg/kg/h. For a seriously thyroid-deprived human weighing 50 kilograms, that would be 60 μg/hour liothyronine via IV. That computes to 1440 μg in 24 hours. It's likely that, during the first seven days, your care team gave you many orders of magnitude more than you are taking now. It kept you alive. You're nearly as ill as someone on life support, and you're struggling by on 60 μg per day.
Given what you're experiencing now, a very safe, but more meaningful addition before noon might be 10 or 15 mcg. See if you notice anything beneficial across the first afternoon. Your mitochondria adapt to the higher dose like irises long deprived of daylight.
A cross-sectional study published in Cureus, December 2023, noted "The complex interrelation between the thyroid and adrenal systems has long fascinated researchers, with growing evidence suggesting a potential bidirectional influence. Moreover, the dysregulation of cortisol levels in hypothyroid patients has garnered significant attention, as altered cortisol dynamics might contribute to the clinical manifestations and complications associated with hypothyroidism. Understanding the subtle interaction between serum cortisol and hypothyroidism not only holds implications for comprehending the pathophysiology of the disease but also presents opportunities for refining diagnostic approaches and developing more effective treatment strategies."
It's hard enough to find an endocrinologist around here, without expecting one who understands the nuances of a cortisol test. I had several saliva cortisol tests, the results were bland (I looked dead by my reading) and the endocrinologist's only remark was "Meh."
Hence, I periodically employ the Bulldozer Titration Method, ("Why go slow, when you can go fast, learn more, and make it memorable?") When I feel the effect of too much hormone, I take my foot off the gas with the NP and coast for a day.
With T3, you're not accumulating hormone that hangs around for days. It's more like beer.
Greygoose's sage advice: "60 mcg is not a high dose for someone on T3 mono-therapy, so you might need more before feeling relief."
If you have Hashi, then thyroid hormones play a huge part in your immunology issues, but they aren’t the be all and end all. To rebuild your immune system (and likely poor adrenal health) takes all the usual: healthy sleep patterns, nourishing regular meals, managing stress, etc, etc.
You can ensure iron and nutrients (especially Vit D) are optimal by testing and there are also other supplements called transfer factors that you could ask your immune specialist about.
Having chronic inflammation (autoimmune issues and viruses, etc) can cause immune cell intolerance meaning they don’t work as they should, making recovery of health difficult/impossible. I’ve been tackling high mould levels and was prescribed Transfer Factor Enviro and Multimessenger.
‘Transfer factor (TF) is a low-molecular-weight lymphocyte extract capable of transferring antigen-specific cell-mediated immunity (CMI) to T lymphocytes’. - pubmed.ncbi.nlm.nih.gov/237....
You said in one of your posts that your thyroid was being ignored by the doctors treating you. Have you given any thought to the idea you may be (or may have been) suffering from myxedema coma?
It is a condition that is poorly named, and the name is misleading. Sufferers often aren't comatose, at least to begin with.
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One problem that can occur in untreated or under-treated hypothyroidism is hypothermia (body temperature below 35C / 95F). Some people on this forum have reported extremely low body temperatures. I had temps below 95F quite often when I was younger (while I still had a menstrual cycle) but now I'm older and past menopause and my thyroid is treated my temperature is always higher (97F).
Could there be a connection between your body temperature, your white blood cell count, and your untreated/under-treated thyroid?
I only found out this evening, having been prompted by your posts, that my white blood cell count was always below mid-range before my thyroid was treated but within a year or two of getting it treated my white blood cell count was always above mid-range. So, for me there was a connection between my WBC, my temperature and how well my thyroid is treated.
When you get your fevers do you take anything to reduce temperature? It might be the wrong thing to do because a high temperature helps the immune system to get rid of pathogens.
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In fact, all these symptoms are on just about every symptom list you can read on-line.
I'm struggling with a form of autoimmune hypothyroid disorder and I can't gain any weight, what is wrong with me?
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