I've wrote numerous posts about thyroid and loss of my brows, lashes and scalp hair.
My thyroid function test is 4.5 range 0.05 to 10.00 for tsh.
This is considered normal by the nhs and as its normal there was no t3 or t4 tested.
I take 50ml of lev. I'm very cold all the time and scalp hair is very thin and patchy, loosing a lot from the top, my hair line and sides. But lashes and brows are stable at this dose and i can function and think, not tired.
Sick of being cold all the time I took 75mls of levo for a day. Within a few hours I wanted to sleep, very sluggish but i felt warmer. My brows and lashes started to shed again by the end of the day and following day.
Anyone else experiencing the same thing. Its been the same pattern for several years now. When the levo is increased i start burning up and can't think. Get very tired and lashes brows heavily.
Can't believe I'm the only person this is happening to. It's definitely thyroid and levo doing this to me.
Just to be clear. My Gp did vit and mineral tests which included VitD, 12 iron. Every thing was high normal. I would give the ranges but the MYGP app is N/A for the tests which gave a reading on patience access. It isn't vitamins or iron doing this.
Its the thyroid medication or there is something happening with my body that I'm not tolerating the increase in medication.
I am deliberately under dosing myself because I feel more normal when my bloods are under. I seem to have underactive active syptoms and hair loss is much worse then my bloods mid normal. So i was thinking it could be the medication or are other people the same with thyroid.
Thanks for reading
I'm going to increase the dose for 1 wk and update the post. 75ml sends me to sleep and 50mls is interactive. So I've cut a yable to achieve 62ml approximately.
Day 1 : I was uncomfortable hot getting ready for work. But cold again by lunch and freezing for the rest of day. Dried my hair, heavier loss from top of scalp. Felt tired, confused made three mistakes in work. Not great as i work with money. Scalp itchy on top and sound a tad anxious when speaking to colleagues.
Tried a second day of 62ml approximately and eyelashes are falling out in my eyes. Very uncomfortable so I've gone back to the 50mls.
I was wondering if the wheat (although percentage) in the medication is triggering a autoimmune attack. Wondered if this couod be why i can't tolarate a higher dose.
I tested negative for autominue disease but barley makes my lashes fall out. Nhs won't accept it could be autoimmune disease.
So why is this happening with a slight increase of dose?
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Karen154
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The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
See GP and request 25mcg dose increase in Levothyroxine and also get vitamin D, folate, ferritin and B12 levels tested
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels ....especially when under treated on to low a dose of Levothyroxine
What brand of Levothyroxine are you currently taking?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
Bloods should be retested 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
As Slow dragon has said. You are undermedicated. I started off on 50, tested went up to 75, tested went up to 100. I'm under 1 (sorry dont have the ranges to hand).
I'm due a test soon and would be interested to find out the results, as I'm feeling the cold (then again, that might just be that the temperature has dropped!!).
I would definately show the link to your doctor and emphasise you have symptoms.
It's really worth doing the vitamin tests as I'm also taking vitamin D. I thought my doctor would be dismissive, but when she saw the levels, she was quite concerned.
Look out in case you have been given Teva brand Levothyroxine after being given this brand by the pharmacy my daughter was given the same wee had been on Mercury pharma for years wee have been very ill for over a year our doctor told us to go to a lawyer and it’s the government to blame Teva has tried three times to get it right and this time again people are saying they felt as if the had been poisoned it’s a disgrace what’s happening just to save a couple of pence.
I think you could be very close two the mark with this answer. What a lovely honest Dr you have to tell you the truth.
I was taking teva but switched to all star and same is happening.
I know im under treated but a small increase in levo and my hair comes out do much worse then it does when under treated. I can't think at all and just want to sleep.
Oh Lord, I do so feel for you and understand completely how you feel...as I'm in the same boat!! Absolutely dreadful. I don't know what we would do without this Group! I am taking bloods in the morning and sending off to Blue Horizon for a test and then will come on here with results and explain my situation. I know the private blood test kits can be expensive but I buy one when they have Offers on and keep it until I need it. It does help! I feel sure you will get helpful information from people on here... This is particularly helpful when you suffer from brain fog (as I do).. working things through in your brain is hard at the moment. All the best. x
Me too! ie 'brain fog' I have been worrying myself silly for months because I seem to not think things through either quickly or easily. It takes me a few seconds to think about whwt Question I have been asked before I can dig the answer from the deep recesses of my memory. I could not go on a tv quiz show ifvthey paid me, because my mind seems to be wading through black treacle at times. I have seriously worried about the possibility of dementia. But with hair loss, no eyebrows, feeling cold, weight gain, dizziness, etc etc I think it is more likely my thyroid than dementia, but time will tell.
Yes I was diagnosed over 20 years ago, taking Levo 150 mcg daily atm, but I suspect that I am not properly controlled. Waiting tor my old results to come from my GP - never seen any of them yet - and then getting new bloods done hopefully.
Changes in dose never used to cause shedding. It started 5 years ago. I was actually over treated at the time and my gp read a old blood test and took the medication in the wrong direction which really messed me up.
But now the healthest i feel is when im under dosed.
I wouldn't know where to get ndt. Is it expensive. Private consultants are as bad as nhs doc's.
all over my head .... I think it looks like male pattern baldness because your hair is thinner at the front and temples. Mine is only just starting to thicken up there after losing hair for about 3 years.
Hi meme, I have been lucky that so far I don't seem to have had any major changescwhen I have had dosage changed. I lost my eyebrows a few years ago, but I really never connected that it could be my thyroid causing it. Same with my nails, I have next to none except my thumb nails which are much stronger, but very 'ribbed'.
I just put it down to my age, I am 67 and very post menopause, which also gave me a great deal of trouble too. And I am epileptic, the side effects possible from my medication for that is an A4 page long too.
Sorry to hear about the change for the worse again. At least you HAVE had an Endo on the NHS? When I asked my GP for a referral to an Endo he told me if that's what I want "you'll have to go private". Hohum !
My Dad who is classed as elderly is on 100mcg of Levothyroxine and it suits him because of his age (he has full head of hair at 78 btw) You are undermedicated and need an increase as soon as possible. One of the side effects of Levothyroxine is hair loss but that is very rare and it is usually because you are not taking enough of the drug. I have lost 50% of my hair in the past because of thyroid disease and my hair is just growing back again after 3 years of extreme hair shedding where I had to get hair extensions to hide my baldness. Once your levels are right your hair should start to grow back again but sometimes if the hair loss has been going of for many years it might not all grow back I'm afraid. My hair was extremely thick so I am lucky because now it is growing back it just looks like normal hair for a 60 year old woman.
When you say you lost 50% of your hair. Where was it falling out from.
Tonight i have a very itchy scalp on top. I've gently combed my dry hair. No loss from the back or sides but heavy loss on top. Like male pattern baldness.
I don't use anything now because I have Graves' disease and I am in remission. I have taken Actavis Levothyroxine but Thyroid S from Thailand suited me better.
I lost hair all over my head and you could see my scalp. I think thyroid hair loss is very similar with everyone. I will tell you that mine has grown back twice now but not as thick as it was. I have actually been given a compliment by some random man as I left the hairdressers which did sort of creep me out lol. I will send you a message about where I got Thyroid S but I am not sure of he still supplies because this is over 2 years ago now.
This is the thing. I lost a lot of hair last year. Only some of it grow back and it wasnt the same thickness. But its shedding heavily again. Everythink i have tried has increased the shed not made it better.
When thyroid levels are moving your hair will shed unfortunately but once they are stable it will stop. It is however a long process and my hair has only been growing back now for 6 months and is not as thick as I would want but it looks like normal hair now. Also Ferritin has to be over 80 for hair growth as well.
You need to stick to the same dose for at least a month to see how you feel. One thing about NDT you can adjust the dose more easily because it contains T3 which does leave the body quickly. With NDT you go by how you feel but I always felt well on it and didn't have to reduce just increase to 1 1/2 grains. I then had a flare up with my Graves' disease and had to stop it. I would take it again if I needed to.
Yes I took PTU 10 years ago and then went into remission for about 4 years. I then had a underactive stage which I self treated because my GP refused to help because even though my T4 and T were low and my hair was falling out my TSH was within range. I am now on my second remission after suffering from a thyroid storm in July of last year.
Thank you, lora7again, I don't actually know what PTU is, but I assume you got help via your GP? I hope you continue to be well from here on in though. Xx
Yes, I have always had a lot of hair, but around February last year I suddenly noticed that my hair was receding either side of my forehead. Tons of hair in my hairbrush, which was unusual.
Also hair and scalp has seemed very dry and have had to change to a coconut oil shampoo and conditioner, which has stopped my scalp from itching like it was.
I have had an eczma type thing going on in my ears now for years. Doctors have not been able to give me anything for it so far, but a lady who was on here yesterday posted that she had it in each ear too and told me what she was given for hers, so I am going to ask for the same for my ears!
Nails down to the quick every few days, weight gain, feeling cold, dizziness a bit like vertigo.
I stand in the supermarket and look up to the top shelf and start keeling over. That comes and goes though. The doc thought it was a virus, took some of my prescription items away (luckily I found I could buy them over the counter) because he thought that they may have been causing it. They weren't, it has stopped for a while, but it has done before too and returned again.
I might be sorted out when I am ready to pop my clogs maybe?
Hi, My hair loss is still continuing... all over really.. but also not just hair LOSS, but hair is going really, really fine and fly-away and just seems to break off ... I so hope I don't actually end up bald?
Yes, but I also don't believe thst hair loss is being taken very seriously by the medical profession ...certainly not as a side effect of prescribed drugs!
I have never gone completely bald even though I was losing hundreds of hairs a day for about 3 years. I now lose about 3 or 4 hairs a day and my head no longer itches all the time. It is a long process to get your levels stable and as I said when your levels are unstable your hair will shred. I had hair extensions put in for about 18 months which helped me cope with having thin hair. They were glued in and didn't make any difference to my hair loss but just gave me more confidence to go out when I felt well enough.
Thank you for your reply... I am really glad your hair loss has stopped... it's so awful. It isn't s simple vanity thing... it actually defines us. Wish it was taken more seriously.
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