I’ve had severe hair loss since being diagnosed with Hypo since 2016. I’ve tried various doses and thyroid medicines which include Synthyroid, Nature-throid, Cytomel, and Tirosint. I introduced the last three medicines in mid-2018. Once I started Nature-throid my eyelashes started coming out. I’ve not been able to recover to this day. I’ve gone from being hypo to a TSH of .01 which clearly is hyper. I dropped a lot of weight, became agitated, and developed red hands. It’s been 9 months now since I’ve been off cytomel, I am only on a quarter grain of Nature-throid and I take 5 of the 13 mcg of Tirosint a day. It’s been 3 months and my hair continues to fall, none of it is growing back nor are my eyelashes. What does come in is very little, crooked, and very wispy/thin. I should mention also mention that over the last 4 years my scalp and hair roots hurt immensely, I can’t lay on a bed, pillow or have my head touch anything without irritation. This does impact my sleep. I feel very depressed. I also have primary ovarian failure or POF. I’ve spent a ton of money, in state, out of state and out of country. POF is rare and most likely caused hypothyroidism but there is no proof. Is there any out there that is familiar with this and has had success. I really would like help, I feel my health has gotten the best of what should have been my prime years.
Please help
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Llamalash100
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Thank you for replying. I have had all testing done and do so regularly. I am GF, no celiacs, take nutrafol for hair and skinade. I eat 10 oysters a day for zinc and my level is over 80. I am in the UD so maybe some of the meds I’ve listed don’t make sense to other readers. POF is also rare so no one really relates. I don’t have hashimotos, small thyroid gland, it was scanned.
I do have an elevated prolactin reading and they think that this little tumor that sits on it is the cause which is why I think I have a thyroid problem.
If any does come across this and can relate, I look forward to hearing.
Now this part of your message is interesting and no one including the NIH expert has said this to me. I will start investigating but there is no doctor here in the US that would know how to deal with this.
Hi, I was tested for Hashimoto several times and all negative. I have had a lot of tests. I am able to try various types of meds and have seen many doctors, everyone with good reviews and supposedly an expert which is actually not true.
Yes because I Have POF my ovaries are tiny and they don’t ovulate, I can’t have children.
I really just want to stop the pain and hair loss. I’ve gone through a lot with my health.
And to answer your other question on gluten, I started in mid 2018, it was trying FMT In Uk. It has significantly reduced my rashes, itches, hives.
So the fact you responded to gluten free diet strongly suggests Hashimoto’s
Hives strongly suggests Hashimoto’s
Hyperprolactinemia suggests Hashimoto’s
Taking HIGH ENOUGH Dose of levothyroxine is essential with Hashimoto’s
Plus all four vitamins need to be OPTIMAL
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate at least half way through range
Serum B12 at least over 500
Active B12 at least over 70
Ferritin at least half way through range
Frequently with Hashimoto’s all these are very low and need supplementing virtually continuously to maintain optimal levels
Levothyroxine ....Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Once levothyroxine is fine tuned, Vitamins all optimal...if Ft3 remains low....(common if gluten intolerant) then will need small doses of T3 prescribed alongside levothyroxine
The last part of this very informative note rings true for me. I did what the drug makers of synthyroid, nature-thyroid recommend. I also found this is UCLA’s medical school webpage that talks about thyroid replacement and then on Merck the drug maker. This would mean I need to take 88mcg so I did that from Feb 26th to May 6th and suffered. I thought if I go back to my old dose of 13 mcg times 5 plus quarter grain Nature-thyroid I would at least feel better Plus get my hair pain to stop. This was the only dose that worked but I stopped it because I thought it was complicated. I was wearing myself off all T3 medicines and for the first time that dose was working. I started that Dec 21st 2019 and changed over on Feb 26th to simplify. When I saw how the improvements were going away and mainly my hair changing back to super curly and I manage I had to stop, my tsh even dropped from .96 to .44. Changing back didn’t improve things, I don’t know why it worked once but not this time.
Its an academic difference......has little effect on the extent of symptoms
Some people might get surprised diagnosis of clinical hypothyroidism with TSH very high ....with only minor symptoms
Many people with sub clinical and only slightly abnormal results....but can have severe symptoms ....and may have to fight to get prescribed levothyroxine
FMT is fecal matter transplant. I went to letchworth Garden City to a place called Taymount. They take super health fecal from local area donors and spin it to extract powerful bacteria and inject it into the receiver. The aim is to improve your gut health and overall health. Great program expensive as anything but did nothing for me.
It is a two week program so I only went for that.
Would Dionne have any recommendations for US specialists?
Low iron and/or low ferritin frequently linked to hair loss
Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
When on adequate replacement dose levothyroxine, or especially on any dose of T3 or NDT ...TSH will almost always be suppressed...it’s irrelevant..most important results are always Ft3, followed by Ft4....and all vitamins optimal
I’ve tried all doses of NDT, I have everything documented in excel. I can never seem to get myself normal. My only FT3 high was at 3.0 when I was severely overdosed on thyroid meds. I became very thin, red hands and my hair looked like it was fried. It still does now but at least there is some shine to it on just 2.25 mcg.
I thought that FT3 was all that mattered but it is not the case for me. I developed severely dry eyes and since my eyelashes fell out I stopped washing my eyes for a fee weeks and developed the worst case of posterior blepharitis. It took over two years to stop and now I just have to maintain through two daily compresses.
Dear Llama, I'll weigh in here as a T3-only sufferer. If you have not already, please read Paul Robinson's three excellent books, Recovering with T3, The CT3M Handbook, and The Thyroid Patient's Manual. I'm quite sure you'll find a few solutions.
I'd also suggest signing up for two groups. RT3-Adrenals uses email for questions and replies. Their moderator is both kind and experienced: groups.io/g/RT3-Adrenals.
Although I'm a man, both groups are primarily woman-centred.
Frankly, I think you may be moving too fast. While T3 is fast-acting, you need take time to let your body adjust to each dosage change. That was more that two years for me!
No idea whether you need a T4 element or not. Have to sort out your adrenals first, then thyroid. A great deal depends on good diet and nutritional support. Thyroid serum labs are more or less useless unless you're taking levothyroxine only.
Reading your own vital signs, as Paul Robinson suggests, just prior to each thyroid dose and two hours after, or Dr. Rind's Daily Average Temperatures, taken three hours after rising (you must rise at the same time for these five days), then plus three hours, and plus three hours--figure the average of those three temps for five days.
If your adrenals are supported the daily averages will not vary more than 0.1° F or C. If your thyroid is supported, your temps will be very close to 98.6° F or 37° C.
The signs of thyrotoxicity--too much replacement dosage--are higher temps, high BPs, and HRs.
Don't depend on docs, particularly endos. Good & caring docs who are willing to put in the enormous amount of time to fix us are practically unknown!
Spoken as a man with no eyebrows, leg or arm hair!
Hi unblocktheplane, first thank you. I meant to say that earlier. I just ordered one of the books. I konw my cortisol is a little low but the never recommended anything, say it is stress. My scalp pain which I think is the nerve endings at the base of the hair follicles hurt. I don't know what to do. I agree after reading Paul Robinson's webpage that I moved fast in the last half of 2019 because I thought T3 was all wrong for me. Most likely I overdosed the entire time. Towards the last 5 months, I titrated down to only 1/4 grain or 16.25 mcg of T3, the rest all T4. My goal was to get off it. The entire time I was on T3, I kept upping it and went from doc to doc. I haven't moved my dose for 5 months now but I think what I"m on is not working, the hair is my worst symptom. I don't believe I have androgenetic alopecia despite the lab saying I do. Have you come across other thyroid/hormonal imbalance patients (estrogen/progesterone) with severe scalp pain and hair loss? I am now able to brush my hair a little better and see a little bit of shine.
Also, I was never able to get my FT3 over 3.0, it always was between 2.3-2.8. It only once was 3.0 but I was most certainly on way too much thyroid med. My TSH was .08 and I had very red hands and lost a lot of weight plus the treaded hair loss, scalp pain, impossible to brush dry hair.
Dear Llamalash, A lot of women report thinning hair from hypothyroid. Men, like me, lose body hair. I'm not quite to the point I could wear nylons, but it's getting there!
I'm glad you found Paul Robinson. He is both sensitive & practical. I also really, really, really suggest you join Rt3-Adrenals and ask these questions: groups.io/g/RT3-Adrenals.
This happens to be moderator break week so you'll have to wait till next Monday. But there's a lot of support there for questions I can't answer for you, such as NDT.
I take all info with a big grain of salt. RT3-Adrenals thinks most people are too unbalanced already for CT3M to help. They advise Adrenal Cortical Extract. Both NDT & ACE, of course, are animal products. I'm a lifelong vegetarian so that lets me out!
How about your appetite? A primary sign of low cortisol is loss of appetite. I've dropped more than 40lbs in the past year (not a bad thing!).
Low cortisol is very hard to deduce, impossible by serum testing alone. Most resources suggest a four-point saliva test which you may have to purchase privately.
Of course, low cortisol is due to stress. It's just that most docs want to send us to shrinks for pills. There need not be obvious stressors in your life--I'm pretty sure mine is existential!
Hi unblocktheplane, I don't know what CTM3 is but I suspect I'll learn about it in the book. I have a good appetite which I'm happy with, I like food. I do have constipation which has been the case for about 10 years. I use Mag07 about 1-2 week. If I can pull my old cortisol tests, should I pull that and share on that forum?
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