I'm feeling a bit hopeless and don't really know what to do any more. I would really appreciate it if anyone has ideas about what to do next - should I see a specialist? Do my results suggest I'm imagining this? Am I just depressed?
I was diagnosed with Hashimoto's four years ago and since then have been under- and over-medicated with thyroxine in a cycle. Over the last year I have felt really bad and last October managed to get the GP to test me and increase my Levo, but I then went hyper so it was reduced. In August this year I went to the GP because I had all the classic hypo symptoms but only my TSH was tested and it was within the normal range so GP would do nothing. I went back and insisted on being tested again this month - my TSH was a bit low so they suggested I just alternate my Levothyroxine dose between 150mcg and 125mcg per day. My T3 was within range so the doctor said I did not need T3 and it wouldn't help.
Last week I paid for Blue Horizon to do a full set of thyroid tests to see if anything jumped out, but I think the results look pretty normal (everything is in range although T3 and Vitamin D are at the very bottom of the range). I've put my results below in case anyone sees something I don't?
FERRITIN 53 ug/L 13 - 150
TOTAL THYROXINE(T4) 90 nmol/L 59 - 154
THYROID STIMULATING HORMONE 3.15 mIU/L 0.27 - 4.2
FREE THYROXINE 17.9 pmol/l 12.0 - 22.0
FREE T3 3.6 pmol/L 3.1 - 6.8
25 OH Vitamin D 54 nmol/L 50 - 200
Thyroglobulin Antibody 25.1 IU/mL 0-115
Thyroid Peroxidase Antibodies 13.0 IU/mL 0 - 34
Vitamin B12 478 pg/ml 197 - 771
I just don't know what to do - I am exhausted, the brain fog is overwhelming my ability to do my job, my mood is so low it feels like chronic depression, my skin and hair are so dry, I'm always cold, I've been diagnosed with IBS, my eyes are blurry...the list goes on! Since I increased my Levo my hair has also started seriously falling out again, which is really upsetting. I think I get pretty bad side effects from Levo, especially the hair loss and irritability, but it seems like the only treatment available.
Does anyone think I should try T3, or try seeing another endocrinologist? I saw one a couple of years ago who just told me to go back to my GP because he didn't think my thyroid was the problem...
Sorry for such a long post - any advice on how to move forward would be really appreciated. I need to try something new, because I can't accept that this is just what life is going to be like from now on!
Thanks very much everyone.
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It sounds like you're having a bit of a roller coaster ride. Has anyone explained Hashi's to you or have you done any reading/research yourself? Doctors tend to dismiss antibodies as of no importance and have very little understanding of the nature of Hashi's.
When you have Hashi's, antibodies attack the thyroid and gradually destroy it.
The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause a Hashi's flare - your test results might suggest overmedication (suppressed or very low TSH, high or over range free Ts) and you may have symptoms of overmedication (hyper-type symptoms). The swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Because doctors don't understand Hashi's, when one of these attacks happens and your results suggest overmedication, they panic and reduce (sometimes even stop) thyroid meds. It's OK to make a slight adjustment but then thyroid meds will need to be adjusted again when you go hypo, increased until you are stable again.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Your TSH is too high, FT4 below just about half way in range, and FT3 too low and if you are currently feeling unwell this is the reason. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.
Also -
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
It's not possible to say if you would benefit from the addition of T3 at this stage, your TSH would have to be around 1 to see what your conversion of T4 to T3 is like.
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Hashi's and gut/absorption problems go hand in hand and very often low nutrient levels are the result. We need optimal levels (not just 'in range') for thyroid hormone to work. Yours need improving, get these optimal, see what difference it makes (along with an increase in Levo) then later on revisit the question of whether you need T3:
FERRITIN 53 ug/L 13 - 150
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
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25 OH Vitamin D 54 nmol/L 50 - 200
The recommended level, according to the Vit D Council, is 100-150nmol/L. Your GP wont prescribe anything because you are in the 'sufficient' range so you will have to sort this out yourself. My suggestion would be to buy some D3 softgels like these bodykind.com/product/2463-b... and take 5000iu daily for 3 months then retest.
When you've reached the recommended level then you'll need a maintenance dose, you couldl try 5000iu alternate days, you may need less, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Was folate tested? B12 and folate work together. Folate should be at least half way through range.
Your B12 is slightly low. An extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
I keep my level at around 1000. Sublingual methylcobalamin lozenges 1000mcg daily are what's needed if you wish to self supplement, along with a good quality B Complex (eg Thorne Basic B) to balance all the B vitamins.
A good B complex containing 400mcg methylfolate will help raise your folate level if it's low. A high folate level is not a problem as long as B12 is high.
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I wouldn't bother seeing another endo at this stage. Many members here know more than some doctors, so see how you go with improving your nutrient levels, addressing the Hashi's, and an increase in Levo.
Thank you so much for this incredibly detailed and resource-rich response. I will look into all of your suggestions and put these recommendations into practice!
Firstly, you cannot 'go hyper', it's a physical impossibility. You can be over-medicated, but I really doubt you ever have. And, you can have a Hashi's 'hyper' swing, as Susie explains, which has nothing to do with your dose. But, you cannot ever 'go hyper' in the true sense of the term. It just doesn't work that way.
Secondly, it sounds to me as if your doctor - who obviously has little understanding of hypo/Hashi's - is dosing by the TSH. That is a serious mistake, and guaranteed to keep the patient sick, if not make them sicker. So, next time he says you must reduce your dose because your TSH is too low, just say no, you want your FT3 tested before you will agree to lower your dose. In any case, when you have Hashi's, you actually need your TSH suppressed, to minimise these Hashi's swings, and stabilise your levels. That will not cause heart attacks, nor osteoporosis! That is a mythe. It will just make life easier for you.
To explain: I was using 'go hyper' colloquially and not technically, to mean the way I feel when over-medicated, and I have indeed been over-medicated in the past, which presented both through symptoms and blood test results. It's probably better described as 'feeling the side effects of too much thyroxine, which in many ways mimic hyperthyroidism'.
Thank you for the further confirmation that I need to get my FT3 up into the higher end of the range, and that suppressed TSH is not a reason to reduce my medication. It does amaze me how little GPs, even very well-meaning ones, can do to help with thyroid problems!
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