Controlling symptoms: Hi, I am hoping that... - Thyroid UK

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Controlling symptoms

mischa profile image
12 Replies

Hi, I am hoping that someone can offer me some advice.

I was diagnosed with hypothyroidism about eighteen months ago and was put on 25 mcg of levothyroxine. I was referred to an Endocrinologist in March last year and my dose was increased to 50mcg and in May increased again to 75 mcg. My latest readings at that time were: TSH 1.8 (ref range: 0.27 – 4.20), T4 18.6 (ref range: 12.0 – 22.0) and T3 3.8 (ref range: 4.0 – 6.8). Although most of the symptoms associated with the condition have gone however I am still experiencing dry skin, some memory problems and also hair loss. What I have noticed is that I had hair loss before being diagnosed it was one of the reasons I went to my GP. However, I noticed that my hair loss increased with the levothyroxine and each time the dose was raised.

Although the hair loss has reduced it is still ongoing and it is this which is making me anxious and frightened. I had thick hair it is now thin all over. There is some regrowth however where the hair is thinnest the regrowth is like fine baby hair.

I find my GP difficult to speak to as he cuts me off when I’m speaking to him and appears impatient with me. This leaves me anxious and depressed. Of all the symptoms associated with hypothyroidism, for me and as a woman, I find hair loss the most distressing.

I decided in December last year to increase my dosage by cutting in half a 25 mcg pill and adding one half to the 75 mcg I am currently taking. The reason for this is because I know there will be more hair loss. Recently I have noticed that my lower eyelashes have almost disappeared and this has left me more depressed and anxious. Will these grow back?

My diet is very healthy and in addition I take a calcium supplement along with D3 and K2. I also take a good quality multi vitamin as well as a good quality fish oil capsule. These I take about 12 hours after taking the levothyroxine. I also take a vit C and evening primrose oil.

I know it takes quite a while for hair to regrow and maybe I’m being impatient but if there is any advice and information you can offer I would be most grateful.

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mischa
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12 Replies
Marz profile image
Marz

How are your levels of Ferritin - Iron - Folate - when these are low they can be one of the causes of hair loss....

Flower3 profile image
Flower3

Your TSH and T4 looks good to me but the T3 isn't right. Your result is 3,8 while the minimum is 4,0. T3 is the active hormone so no wonder you don't feel well and have hair loss.

Looks like your body can't converse T4 into T3. Could be a iron deficiency (get ferritin checked). You could also talk to your doctor about adding T3.

mischa profile image
mischa in reply toFlower3

Lots of thanks to both of you. I have begun taking iron and I have also read somewhere that hair needs protein and Phillip Kingsley the hair specialist states that hair needs protein particularly in the morning so its back to bacon and eggs for breakfast for me.

When I next see my GP I will ask to be tested for ferritin, D3, Biotin and iron. All relevant to hair. Once again many thanks for responding.

Enfrance profile image
Enfrance in reply tomischa

Please let me know how your hair growth is going? I have had the same problem. I too, am now taking 100 mg levo. Unfortunately, I think have had the hair loss with the levo only treatment and low ferritine levels.

mischa profile image
mischa in reply toEnfrance

Hi Enfrance Although I am still losing hair the amount has lessened to a great extent and yes my hair is growing but it is thinner than before. Levo is known for causing hair loss unfortunately but it says on the pamphlet in side the Levo box that hair loss is a side effect and should slow down by around three months of starting the Levo and also once you are on a sufficient dose. My problem is I was losing hair before diagnosis and then lost more hair when i started on Levo and it has taken some considerable time to get to the right dose.

Enfrance profile image
Enfrance in reply tomischa

Please whatever you do stay persistent!! I have been on a rollercoaster with this. Almost every doctor has told me I'm in the normal range, but it hasn't been my case at all!! It is very personal, but I would aim for above 70 for hair regrowth. It has been 2 yrs. and I have only got up to 59 with iron supplementation only to fall back to 46 because I was foolish again to listen to the doctors.

Check out the book Stop the Madness it goes into alot of detail about ferritine-your iron deposit. You should get it up to between 70-90 to regrow the hair lost.

All the while, I have been taking 10,000 biotin and using minoxil?-rogaine. My hair still is not what it used to be, but this time I won't stop the iron supplements until I get up to the 70s. Agh! I am also trying to find a dr who will give me T3 with the levo T4 to maybe help?

Enfrance profile image
Enfrance in reply tomischa

Bad news. I have recently uped my levovto 100g and now I'm noticing hair loss again.

I must find a substitute for levo ASAP...I just don't where???

mischa profile image
mischa in reply toEnfrance

Hi Enfrance

Yes I know it's really a nightmare I also have upped my Levo and the same thing is happening again. What I do know is that each time I up it the hair loss is not as great as before - which is some comfort. However, my lower eyelashes are disappearing too. Its horrible. T3 also has a hair loss problem so I'm a bit reluctant to go that way. I would like to try dessicated thyroid. It can be expensive but I think that if you leave a message in My Communities and ask for someone to private message you then someone could tell you where it can be obtained. Or where to get a private prescription. I have read such comments.

Enfrance please keep in touch and let me know what you do. Because I feel the same as you - where to turn.

Enfrance profile image
Enfrance in reply tomischa

Okay, will do!!

Enfrance profile image
Enfrance in reply tomischa

Mischa...where are you? I think if you are anywhere but france ...you have other options than Levo T4.

mischa profile image
mischa in reply toEnfrance

I live in London. Do you know any other options for me? What are your options in France?

mischa profile image
mischa in reply tomischa

I meant to say you can ask someone in My Communities to private message you with information on how to obtain dessicated thyroid if that's what you want. If you don't get a reply then question again and keep asking because eventually someone will get back to you.

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