Thanks for letting me join. I am 32 years old. I have found it hard to come to terms with my hypothyroidism. I was diagnosed hypothyroid in 2011 but did not start treatment until 2012 when my TSH was over 20 and a Free T4 below 11. My symptoms are mainly not going to the toilet every day, acne, dry skin, heavy periods, tiredness, low mood, memory loss, low concentration, tingling in feet, splitting nails, weight gain. Any advice would be welcome, thank you
December 2017
TSH 4.90 (0.2 - 4.2)
FREE T4 14.5 (12 - 22)
FREE T3 3.9 (3.1 - 6.8)
FERRITIN 58 (30 - 400)
FOLATE 2.4 (2.5 - 19.5)
VITAMIN B12 236 (190 - 900)
VITAMIN D TOTAL 60.2 (<25 SEVERE...25 - 50 DEFICIENT....50 - 75 SUBOPTIMAL...>75 ADEQUATE)
(Working my way up to taking ferrous fumarate 210mg for iron deficiency found in 2014 (the tablets taste awful), prescribed folic acid 5mg once a day for folate deficiency, 3000iu D3 moved down in September 2017 from 9000iu due to feeling unwell on the 9000iu - confirmed vitamin D deficient, prescribed hydroxocoblamin injections on NHS for suspected low B12 symptoms - B12 result before injection was given)
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Zoeye
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It appears you are still quite under medicated. Others have way more experience than I do, but your TSH alone says a lot. Most feel better with it around 1 or below. Also T4 is usually optimal above halfway through range, and T3 around 2/3-3/4 through the range.
What dose did your Dr tell you to take ? You are undermedicated so whatever dose you are on is not enough, you need to see your GP to get a higher dose prescribed.
Well your GP is clueless, 25mcg is a tiny dose that won't have much effect at all. I suggest you take the dose your Endo prescibed but don't jump straight from 25 to 175 in one go, if your GP won't prescribe higher doses get back to your Endo and ask him/her to sort it out.
Endocrinologist is a specialist. Your GP has no business interfering with the endo's treatment plan. Reducing dose from 175mcg to 25mcg shows GPs lack of knowledge and competence.
Hi and thanks, I am looking to change endocrinologists as the current one says he does not understand my fluctuating results and has asked me on more than one occasion if I have been taking levo correctly when unexpected results come back to him.
It's not wrong to ask a patient whether they are compliant, in fact, endo has a duty to ask when results indicate patient may not be. However, I would expect an endo to realise that the fluctuation is probably caused by autoimmune attacks on your thyroid as your antibodies are high.
Your endo seems to consider FT4 slightlly over range as thyrotoxic. It's not as long as FT3 is withing range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your endo.
You'd better figure out which is the least worst option, your disbelieving endo who nevertheless dosed you properly on Levothyroxine, or your GP who didn't.
Was T3 withdrawn because of your lactose-intolerance?
The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...
Perhaps you could write to the new endo and say you felt better with T3 and ask for it to be reinstated or ask the hospital to assign you to an endo who doesn't disapprove of T3.
Hi, I believe I have Hashimotos, I am not very sure. Would this be the reason for the varying results and changes in dose? If so then I am not to blame for any changes in thyroid levels?
Yes antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12.
Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut and gluten connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ok thanks, yes, my digestive symptoms strongly suggest coeliac as do the ever increasing vitamin and mineral deficiencies cropping up. Also getting mouth ulcers and cold sores on my lips. GP says on that basis it is worth redoing the coeliac test and doing it properly.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
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