Last year I got severe Alopecia areata and while getting tested discovered I have hashimotos. I am really hesitant to go back to my endo because she didn't actually tell me I had hashimotos- I had to read it in a referral letter I peeked at to my GP. I found this to be quite a shocking failure of duty of care.
Anyhow my doctor has run my thyroid tests and the results are within normal range. I had read a lot about normal vs optimal. I currently take a targeted immune suppressants which is successfully treating my alopecia areat and I will probably be on for life in order to keep it in remission.
My ferritin levels, saturation levels and iron levels are all abysmal- 7, 12, and 11. I am currently on an iron supplement, biotin supplement, b vitamin supplement, vitamin d 8000 mg per day, methyl-folonic acid supplement, vitamin c supplement.
I was very thin at first and now am gaining fast without any change to diet. I feel tired and blah and usually have to sleep from 8 to 8 or am exhausted. After going through a year of hell when I lost all my hair I really want to feel a bit better now I am growing my hair back.
I am interested in maybe seeing if a small dose of t3 will help me but don't have any doctor I feel comfortable enough to ask for advice. My current gp thinks my levels are fine.
My Tsh is 2.82 mIU/L
Free T4 is 15.4 pmol/L
Free T3 is 4.3 pmol/L
Any advice would be greatly appreciated.
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LyricRupert1
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I sympathise with you - having Alopecia Areata which I have three times so far.
It is disgraceful that you were left undiagnosed even though the Endocrinologist failed to notify you. He failed in his duty to care as you had an Autoimmune Thyroid Disease (Hashimoto's).
You don't say whether you are taking levothyroxine, because if you are not, you should be. According to Dr Toft (an expert) that if antibodies are present, to 'nip things in the bud' a prescription should be given.
All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and if taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards. This method keeps the TSH at its highest as it drops throughout the day and may mean the difference between being diagnose or not.
Thank you so much for answering. I must admit when I read the diagnosis I was surprised as she had said - your thyroid is a bit damaged but no need to do anything! And then there in the letter she had written that I had hashimotos! Last year my focus was so much on the alopecia that I really felt I couldn't tackle the uphill battle of trying to find a treatment for my hashimotos but now my hair is back I really want to try and figure out how I should be moving forward. Firstly I know I have to work on my iron levels, which I am doing ( my diet is healthy- paleo based) but I really am concerned that the doctors will wait til I am full blown hypo before they will act.
My concern with determining the right course of treatment is firstly knowing I will have to stick up for myself with doctors ( something I find hard to do) and also I am super nervous of anything stopping my progress re hair... I have read all the horror stories of hair loss on various thyroid treatments - T 3, T 4 and NDT and also the horror stories of hair loss if NOT treating! I feel a bit frozen by fear by it all.... my basic health is fatigue, unexplained weight loss then unexplained weight gain ( both rapid), face puffy, skin kindof dull, aches and pains, digestive discomfort....
Once you get onto a dose which relieves your clinical symptoms. If your doctor or Endcrinologist (as they may only look at blood test results and if TSH is not too high they may not prescribe) are reluctant to start you on levothyroxine, you can get a copy of Dr Toft's online Pulse Article which will be helpful to you. He states if antibodies are present you should get a prescripition. You will have to email Dionne - tukadmin@thyroiduk.org
This is another from Dr T (who is also the physician to the Queen when she's in Scotland):
Many people seem to have no problem with levothyroxine but there are a few who need to have T3 add (which they have recently stopped prescribing) and one of our Advisers and his team have proven than a combination of T4/T3 works best for many.
Hypothyroidism and Hashimoto's are treated the same, i.e. levothyroxine. Going gluten-free can help reduce the antibodies which attack the thyroid gland and sometimes you may feel hyper and at other times hypo. Gluten-free in general can help other autoimmune conditions.
Taking digestive enzymes after/during a meal can help with gut issues. Usually, as symptoms are nearly identical of high or low acid, GPs usually give us acid reducing tablets, when in fact we do need acid to dissolve food as everything has slowed down with hypo.
p.s. re hair loss, - if I get upset my scalp gets irritated and if it does I use Head and Shoulders Shampoo for itchy scalp and I also take one anti-histamine tablet. So far it has worked and, hair hasn't begun to fall. As I've had three bouts of A areata so I know the signs well by now.
Thank you- I will try to talk to my doc about my hashis and possibly getting on some treatment. It's tough- when my hair started to fall out the doctors looked at me like I was imagining it until ALL of it was gone. Even then it was like "you don't process stress well" it wasn't until I met my wonderful immunologist that someone took it seriously. Unfortunately my immunologist isn't keen on treating thyroid problems as he says he feels under trained for that (although he seems a lot more knowledgeable then my endo) and my doctor is kindof of the mind that my blood results are "normal" well except for my ferritin (7, range 30-180 😳) and my iron - and iron saturation which she has just told me to take 50 mg a day iron supplement... my immune suppressants help but I still feel not quite right. I guess I just need to get assertive and be my own best advocate. Thank you again
If you email Dionne at TUK and request a copy of Dr Toft's article in Pulse Online re giving levothyroxine to people who have thyroid antibodies in their blood. Highlight the part and show to your GP.
tukadmin@thyroiduk.org
Dr Toft states that if antibodies are in the blood we should be given levothyroxine.
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