Stopping levothyroxine: Hi all! My hair loss is... - Thyroid UK

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Stopping levothyroxine

JAYR profile image
JAYR
19 Replies

Hi all! My hair loss is still continuing and I've really had enough. I was diagnosed underactive a couple of years ago and don't recall complaining about hair loss leading up to diagnosis. I do however recall mentioning re sensitivity to cold. I'm on 50 mcg and told T4 is fine. Mind you, none of this makes any sense to me TSH, T4 and T3 and so on. I've been told that it's my TSH. I read Mary Shomon's book recently on hair loss as she too is hypo and has experienced hair loss which is now better. One of the things she has suggested is evening primrose which I find does nothing for me. As suggested by a member I've tried spatone which has not helped. I asked me GP if I could stop the thyroxine to see if maybe that would stop the hair loss as I know taking thyrxone can also cause hair loss. Last week she said that was fine as I was on a low does anyway and that I am to have my bloods repeated in December along with B12 check. Within myself I feel fine. It's just the hair loss that bothers. Even though I feel cold, I am no colder that then person sitting next to me at work. Please let me know what you think. Is it true that doctor's are quick to prescribe medication for thyroid problems and not get to the route of the problem as to what is causing the hypo? I'm wondering whether I should have a food allergy test in case something I'm eating is causing it. Generally I eat quite healthy and am not doing anything differently compares to before being diagnosed. Please may I have your thoughts. Sorry to go on but I would rather dealt with the hypo natural way that keep popping pills. Any suggestions? Thank you all. Jay

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JAYR
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19 Replies
shaws profile image
shawsAdministrator

Hair loss.thinning is quite common with thyroid gland problems. If you can possibly get a print-out of your latest thyroid gland blood tests with the ranges and post on a new question, for comments.

PS. By stopping levothyroxine which would take about 8 weeks to leave your system, you need some other thyroid gland hormone instead as it is not a good idea to have no substitute.

The fact that you are still cold suggests that you may be undermedicated. If your B12 is low that, too, can cause symptoms.

JAYR profile image
JAYR

Hi Shaws, I will obtain a copy of my recent results and post as you suggest. I had a blood test done in September when I complained yet again to the doctor about the hair loss and she came back to me and said that thyroid was fine and no need to increase the medication as levels o.k. I thought I would suggest stopping the thyroxine as losing hair since taking it however it was o.k beginning of this year for a few months so I don't know if it happens in cycles. Maybe I'm in denial I don't know but I really don't think I need to take the medication as it does not do anything for me. I am only taking it as I have been diagnosed hypo not because it is helping with any symptoms as I generally feel o.k. What is the worst that could happen if I don't take it, especially as I'm on 50mcg and feel o.k? I'm considering having a food allergy test in case it's something I'm eating that's causing the problems. My parents are not hypo and nor any other member of my family.

Jackie profile image
Jackie

Hi Hair loss can last a long time. Mine did recover eventually on the right treatment.

Make sure you are having tSh, T4 and Free T3 tested. Ask receptionist for results + ranges ( differ, so vital)Quite common to need T4 ( levo) and t3 on scripts. Only the blood tests can safely tell you that.

Make sure GP has tested for iron/ferritin, vit D, B12 and Foliates and Diabetes, mostly autoimmune and hormonal and related. Some of these could cause the hir problem , or effect your thyroid levels, or both. These if OK should still be annual tests with thyroid disease.

Best wishes,

Jackie

JAYR profile image
JAYR in reply to Jackie

Thanks Jackie. Went back to the GP again this afternoon and have obtained copy of recent bloods. I will post with a new question. The GP says all my bloods are fine and given me blood slip for testing of B12 and Glucose/Folate which I have had this afternoon as not previously done. Thank you J

Jackie profile image
Jackie in reply to JAYR

GP says fine, make sure you agree, often not the same! Also make sure you have also had the Free T3 done.

Best wishes,

Jaackie

JAYR profile image
JAYR in reply to Jackie

Thanks Jackie. I have just now posted my results. Please let me know what you think. I don't feel I am in a position to agree or disagree with the GP re my results as they mean nothing to me at all. All i want is for soneone to get to the bottom of what is causing my hair loss. If it is the the thyroid then why is it the GP says that taking 50mcg is fine for me however my hair is still shedding loads. I feel I am going mad and all I want is some answers. Not sure what Free T3 means. I cannot see it on the printout. Please let me know what you think of the results I have posted. Thank you. J

Jackie profile image
Jackie in reply to JAYR

Hi Jayr, I assume they are on today¬s questions? It often hangs on the FT3, so I hope that is there too?

I will look a little later.

Jackie

vgam profile image
vgam in reply to Jackie

Hi Jackie....how long did it take for your hair to settle? Thanks.

Jackie profile image
Jackie in reply to vgam

Hi, A good 2 years for my hair. However, underarms and intimate hair never has regrown.Thyroid defintitely OK now. for a long time , so has my "top know"

Best wishes,

Jackie

shawj31 profile image
shawj31

Is your underactive thyroid due to Hashimotos ie Autoimmune? If so you could have another autoimmune condition. I was diagnosed 3 years ago and started on low dose of thyroxine which over time has now increased to 125m. The biggest and most upsetting symptom has been hairloss. All the Drs were in denial about it - until it became really obvious and was referred to a Dermatologist. The Derm 1st thought it was hormonal and so went on Yasmin, minoxidil and iron. However no improvement. 6 mths ago I was given a scalp biospy and lichen planopilaris ie an autoimmune scarring alopecia was diagnosed. I am now on treatment for that and fingers crossed I am seeing signs of improvement. I am so angry with the Drs that they didn't listen to me and see how bad the hair loss as I could have begun this treatment years ago and saved a lot of my hair. My Dermatologist is positive tho and thinks that with the anti-inflammatory treatment we can stop the loss and then start using the minoxidil again to encourage growth. If your scalp feels tight on hot deep in the follicles (no visual signs tho) then please get yourself to a Derm asap.

JAYR profile image
JAYR in reply to shawj31

Thanks Shaw. I have also previously seen a dermo privately who had also carried out various blood tests. He assured me that I was definitely not going bald and said it was teflogen effluvium, told me to use Regaine which I have been using however no good. I said to him could it be because of the underactive thyroid that I am losing hair, to which he replied no as I was replacing it with thyrxone. He then also put it down to my shoulder injury however I do not believe this as my I have been losing hair before the injury. At the time my ferritin was low however now o.k. My scalp feels fine and hairdresser says condition of scalp is good. She too noticed a lot of hair falling out when she washed it. I only have to shake my head and lots of hair fall out. I find hair all over the house even thought I have it tied up most of the time. I have lots of small hair on my head sticking up from what I assume where hair has broken. I saw my GP today who says that my bloods are fine, e.g antibodies, thyroid, ferritin, cholestral, vitamin D. She gave me a blood slip today to have B12 checked and also glucose/folate which I have now had done. Apologies, do you think I may still have hashmitos. I don't really know much about it. I have also obtained a copy of my recent bloods which as you suggest I will post under a separate question. Thank you. J

JAYR profile image
JAYR

Good luck with your treatment. I totally understand what you are saying about the drs not listening as I too feel the same way. I know how much hair I am losing and so does my daughter as not only does she too see it all on the floor around the house but also in her food even though it is tied up. I know you can lose up to 100 hair a day but I am losing way more. I hardly have a ponytail now. J

vgam profile image
vgam

Hi JAYR ..I share your pain....my hairloss started 3months after starting 25mcg of thyroxine in aug 12.... it just doesn't want to stop...ive spoken to 4 docs who keep telling me its not due to thyroxine. ..its a reaction ti high tsh.... I spoke with an endo on the phone last week who advised it can take a year for hair to settle once you have a consistent tsh...why don't I believe that?

JAYR profile image
JAYR

Hi vgam, yes I totally agree with you. I feel mine actually started a couple of years ago after starting levo but I was told by one GP at the practice that it was transient and hair would return to normal. Well if that is the case then why is it still shedding loads. At one stage earlier on this year it had actually improved. I feel I am being told one thing or another and do not agree with any of them. I really don't get it and just wish someone could get to the bottom of it. I am the same as you, it's just not stopping, texture of hair feels different too. I have also been told I will not go bald. Well actually that does not make it alright. Still shedding hair and to the point where scalp is visible. It's affecting my confidence levels and I feel embarrassed.

vgam profile image
vgam

The gp did read out from the bmj that thyroxine causes transient hairloss...Ifound that even more annoying as its been nearly a year...surely thats not transient....all docs and endos at hos...I attend for diabetes...think im made according to them thyroxine does not cause hair loss...

4sarah1 profile image
4sarah1 in reply to vgam

I suffered hair loss on leveothyroxine. It stopped when I went on to Nutri Thyroid.

vgam profile image
vgam in reply to 4sarah1

Hi...did your gp prescribe this?

Thanks

4sarah1 profile image
4sarah1 in reply to vgam

No I saw Dr P and he recommended it. I always felt cranky and highly strung on levo and my thinking was always foggy.

JAYR profile image
JAYR

I feel same. Been told by various professionals that it could stress, transient, hair dye, shoulder injury, iron although that is ok now or that I'm perimenopausal which is not true. I do not agree.

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