Hello, could someone please give me some advice? I had a TT 14 years ago and see an oncologist annually for checkup. He usually only tests TSH, T4 and thyroglobulin. My TSH is usually suppressed around 0.003 and T4 20-22. Most of that time I have felt ok but recently not so good, tired, headaches, gut problems and hair loss. Since finding this forum I have learned so much and it has been so helpful. When I had my last bloods I asked him to test Ferritin, B12, Folate and Vitamin D. results are:
TSH 0.003 is very suppressed and T4 20-22 is usually top of range so you appear to be adequately dosed on Levothyroxine.
It would be a good idea to check your FT3 as thyroidectomised patients are reliant on peripheral T4 to T3 conversion and often do better with some T3 added to a reduced Levothyroxine dose. You can order TSH, FT4 and FT3 tests from Blue Horizon or Medichecks via thyroiduk.org.uk/tuk/testin...
Ferritin is optimal at just over halfway through range.
B12 423 is unlikely to be deficient.
Folate is a little low in range. I would supplement some folic acid or methylfolate for 2-3 months.
VitD is severely deficient. Your GP can write a prescription to correct vitamin D deficiency. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maintenance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.
thank you for your instant reply. Yes, he has given me another blood form asking for T3, thyroglobulin and thyroglobulin auto antibodies. I am to take the form to the endocrinologist for him to add his own blood requests. He mentioned the calcium supplements I was given after my op. He thought I was still taking them. In fact they were stopped 2months after op! This forum has provided me with so much knowledge - I think the oncologist was quite taken aback with my questions! Thank you so much.
I had my TT in March 2004 and just checked letters from surgeon who said in June 2004 I could stop my calcichew Tabs as my recent calcium level was “still within normal range.” No checks since then as far as I know. I saw him annually till his retirement 4 years ago and then was referred to the oncologist who supervised my RAI treatment. I think you’re absolutely right and he is handing me over - is that a good thing do you think?? The GP s don’t inspire me as every time they get a T4 blood result they phone and tell me to reduce my thyroxine dose as I am too high! Have told them many times I have to be high. Doesn’t inspire confidence, hopefully the endocrinologist will sort me out. I feel much better since I discovered your great advice.
Hi Tabitha6. Had TT 2016, GP keeps asking me to have Tft as they prescribe Levo. Finally gave in, lo and behold phone call two days later telling me to lower dose. Respectfully declined.
The info I have gotten from this forum is invaluable.
Until my appointment with endocrinologist comes through, GP has prescribed Colecalciferol capsules, with another blood test in two weeks to check level. Chemist instructions on box says “ 3 Colecalciferol 50,000 unit Caps once a week for 6weeks”. Hope you don’t mind me asking, I know I can check with surgery tomorrow, but surely I shouldn’t take 3x 50000 unit capsules all at once? I wonder if it should be “take one three times a week”?
Not as high a dose as you were prescribed but will set me on the way.
You could take 3 x 50,000iu in one dose but it would actually be better to take 1 x 50,000iu capsules three times a week rather than one large bolus dose of 150,000.
With both folate and vitamin D bring too low and B12 only average it suggests your not adequately medicated, despite low TSH
Definitely need to get FT3 tested
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Adding a good vitamin B complex too might help
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
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
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following RAI and Thyroidectomy
Thank you for your advice. As I said I’ve learnt so much and feel able to ask the right questions of the oncologist and the endocrinologist that I’m being referred to. Thank you and everyone else who gives their time to be so helpful.
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