I was wondering if anyone has had a similar situation.
In early March my wife's hair suddenly started to fall out and is continuing to do so. In early November the he GP had reduced her T4 to 50 from 75 due to a low TSH of 0.13 reading, very much against my protestation. More or less as soon as she started on the 50 she felt terrible and quickly reverted to 75 but was still struggling with leg cramps etc. . On the 1/12/22 we had our first endo appointment where he agreed that she should try 100 as it was very much down to how she was feeling. The endo agreed to a T3 trial on the basis of a positive bone scan.
On the 27/02/23 her test results where.
TSH: 0.01 range .27-4.2 mu/l
T4: 23.3 range 12-22.00 pmo/l
T3: 5.6 range 3.2-6.8. pmo/l
In early March her hair suddenly started to fall out and has continued to do so which is terrible. She has now lost more than half. There does appear to be new growth but early days. Following the second meeting with the Endo (shortly after the hair loss started) my wife has now started the trial and has been on 5mcg of T3 for 2 weeks with 50mcg of T4. She is now feeling OK. Hopefully this will help.
We believe that hair loss is due to the Thyroid issues but was wondering if anyone had had experience of this. Is it likely to be thyroid or should we be looking to get test for other potential causes.
Thanks for your help
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Thyroidconfusion
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Thanks Slow Dragon, experienced testers now. Yes we followed all the recommendation. Supplement with D3, B12. Last full blood test on 22/09/22 when Folate, Ferritin, B12 and D3 all good. Lots of red meat and animal fat in the diet. Branding has not been consistent. Now on Mercury Pharma. Previous Anti body test (both) have always been low so not autoimmune but it has been some time since they where tested. The tests where on a dose of 100mcg.
I can only give you my own experience. So first off, your wife is so lucky to have you helping her fight her corner. Secondly, her vitamins/minerals need testing, to see if she is low on any hair-helping elements such as folate. DON'T take kelp or iodine supplement; whilst they may help if shedding hair is the only issue, they are both likely to harm what your wife has left of her thyroid. If she is taking Rogaine to help with regrowth there is a 'dread shed' at the beginning of treatment. She will then need to continue using Rogaine forever, or any improvement will be lost.
In the meanwhile, to help at a time of deep emotional distress (for most women, hair is their crowning glory) your wife may find this site useful. beautifulbetsy.co.uk I can attest to the beauty of the hair used in these lovely little toppers but if her hair isn't coming back (she may have another autoimmune disease - androgenic alopecia, common in women over 50 at menopause) she may need something 'extra' beyond these.
Deficiencies can cause hair loss and a large number of vitamins can affect hair growth. If you don't get enough of the following vitamins and minerals in your diet, hair loss and unhealthy hair may result:
vitamin A
vitamin B6
vitamin B12
beta-carotene
biotin
vitamin C
calcium
vitamin D
inositol
iodine
iron
magnesium
niacin
pantothenic acid
selenium
zinc
There are certain things to be aware of for some of these nutrients, and you should research each of them yourself.
Excess vitamin A is poisonous to the liver.
Excess vitamin B6 may cause peripheral neuropathy (deficiency does the same thing).
Beta carotene is converted to vitamin A in the body. Some people can't convert beta-carotene to vitamin A very well and beta-carotene builds up. (This is true for some people with thyroid disease). This may cause the palms of the hands and the soles of the feet to go orange.
Biotin - this is perfectly safe (as far as I know) but it can affect certain types of blood testing machines, so always stop it for a week before any blood tests. (That is being very cautious.)
Calcium - get tested for this before taking it. It only needs to be supplemented if there is low levels or a deficiency. Excess calcium can end up lining the arteries.
Vitamin D - this helps the body to extract calcium from the diet - but to do this it also needs vitamin K2 which is mentioned an enormous amount on this forum.
Iodine - used to be used in the treatment of hyperthyroidism, not hypothyroidism. Avoid unless a test shows a deficiency. The best test is a non-loading urine test.
Iron - this is poisonous in overdose and when supplemented unnecessarily. Always do an iron panel before even considering iron. For someone whose iron and ferritin levels are deficient or very low iron is amazing stuff.
Magnesium - Very helpful in sensible doses. People must have functioning kidneys when taking it because the kidneys expel any excess in the urine. Very good for cramp and restless legs.
Selenium - a good thing to take for many of us. Anyone who takes iodine will tolerate it better if their selenium is at a good level. Lots of mentions of selenium on the forum.
Zinc - Zinc and copper have levels that are on a seesaw. If zinc goes down, copper goes up, and vice versa. It is common for people with thyroid disease to have low zinc and high copper.
Good luck.
P.S. I'm not a doctor - always do your own research.
hairloss is a really tricky one. I have had on and off shedding for about 15 years. What I can say is, hairloss tends to start slowly, a bit of shedding that isn’t really noticed until it picks up and you tend to really notice it when your hair becomes thin. Or, sudden hairloss is normally a delayed reaction, up to 3 months after a trigger. Hairloss can continue for up to 6 months before it settles down and regrows after a trigger. I have had hairloss from under active thyroid, change in medication, AZ vaccine, Covid, and I have now noticed I get a bit of hairloss about 5 days before my period!! Not much help. Vitamins and hormones, and gentle hair care.
Just to echo other people’s thoughts. Hair loss is a multifaceted issue. It also depends on how old your wife is. Female hormones also play a huge role in hair growth and shedding so this will be something to consider too. Whether she is perimenopausal or menopausal. Women can experience rapid hair growth during pregnancy but afterwards due to the sudden drop in oestrogen they may find that their hair starts to shed suddenly. So it’s incredibly nuanced.
Low ferritin can cause hair loss. In the early days of my diagnosis I was losing hair, and I thought it was down to my thyroid. However, my ferritin was also very low, and I think this may have been the cause (or maybe even a combination of both).
I managed to get my ferritin levels up, and my hair did eventually come back, albeit it's overall growth is extremely slow these days (can literally go months without a haircut as it barely grows).
It can also be caused by all kinds of other things as others have described on here. I had major surgery back in 2015 (10 hour operation) and around 3 months after this noticed huge hair loss whenever I brushed my hair. One of the doctors said it was common when people had had major surgery to experience hair loss, as it was the bodies reaction to being under anaesthetic for so long which everything except the vitals effectively shut down. Again, it did come back eventually.
I am sorry your wife has lost her hair. I think it can happen to several people who have hypothyroidism.
I lost my hair initially when prescribed T4 (levothyroxine) and it also gave me severe palpitations - especially during the night.
Years later - I have no hair at all and have been taking T3 (liothyronine) for some time now but it hasn't improved my hair at all. The benefit of T3 for me is that I feel well and have no symptoms.
I have only lost hair twice in my life once in my late Twenties after becoming very ill. No Thyroid problems then and more recently since Dec 2022. This was after my usual Thyroid s NDT was reformulated. I have noticed that now I am back on my normal Thyroid s which I have increased percentage wise my hair has started to grown back. The first time was in 1970's and now 2022. I only had my Thyroid removed back in 2015 it was working perfectly before then. I think that it's down to change and nothing more complicated than that. The body especially hormones doesn't like it.
just wanted to add I just recently had hair loss and looking at the timing it might be covid related. I already had slight thinning at the temples which I relate to female pattern baldness due to menopause and heredity. But the recent hair loss was a large clump down the drain every day and all over head. I know how stressful this can be! I started using rogaine and see much improvement...not sure if also just the timing and that post covid my hair is growing back. Maybe go to dermatologist also for an opinion....
I too lost half my hair whilst I was on levothyroxine with similar does to your wife. It isn't conclusive that it was a side effect but I suspect it was. It has been a devastating experience, my heartfelt support to your wife.
I have complete sympathy with your wife and understand how she feels.
I have had frequent hair loss over several years now. Hair drops out completely and then begins to return very slowly after several months and at present I am bald again.
At the beginning of my hair loss and one visit to a person who deals with hair problems who gave me injections into scalp and within a few weeks hair began to grow slowly again, Since then my husband has stated I am not to have any more injections as he found it very difficult to watch the procedure. Also the fact that new hair dropped out after severl months.
I now have several wigs that I can wear, if the necessity arises.
I also have had a diagnosis called 'Autoimmune Thyroid Disease No. 3'.
I know exactly how a female feels when hair has disappeared and its an awful feeling.
I hope your wife 's wellbeing will not be too affected and it's good that you are sharing her dismay due to hairloss.
I am prescribed liothyronine by GP and it has made me symptom-free with regards to clinical symptoms.
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