I am 67 years old and have been on Levothyroxine for just over 6 years. I was alternating between 125mcg one day and 100mcg the next and thought I had cracked the dosage as I was feeling quite well. However, when I visited my GP in October last year he read my TSH level of 0.25 as being too low and advised me to decrease my dosage which I did by switching to 125mcg on one day followed by two days on 100mcg. About the same time, I fell victim to the dreaded flu/cough lurgy that seemed to be around and then coughed consistently for about 10 weeks. I have felt continually exceptionally unwell with headaches and aches and pains throughout my whole body this whole time. At the same time I have very slowly been reducing my Prednisolone which I take for Polymyalgia Rheumatica and am presently taking 3.5mg per day. I have been putting my continually feeling unwell and aching so much down to possibly not taking enough Prednisolone but am now coming to the conclusion that my symptoms are more related to my Hypothryroidism and not to my Polymyalgia Rheumatica.
My questions are -
Would I benefit from having private blood tests for my Hypothyroidism?
If so, which organisation would be recommended?
Which blood tests would be advised?
If the blood test results demonstrate that I need to have FT3 or any vitamins, would I purchase these on line as I am more or less sure that I would not be prescribed FT3 by my GP. The only blood tests they will do is for TSH and not T4 or T3 - they are extremely reluctant to do anything other than TSH levels as they seem to be of the opinion that this is the chief indicator.
If I do need to buy on line, which suppliers are recommended as providing high level products?
Sorry to be so long-winded but any advice would be very much appreciated.
Written by
twinbulls
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Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should 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
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: tukadmin@thyroiduk.org
Prof Toft - article just published now saying T3 is likely essential for many or we have to have high dose Levo to get adequately treated
Vitamins, obviously depends on how low yours are. But it's pretty common to have to self supplement
T3, it depends if your results show low FT3 and then can see/find a T3 friendly endo (list from Thyroid UK).
If high thyroid antibodies then likely gluten may be an issue
First step in the journey is to get full blood tests
Brilliant advice from SlowDragon if you take the advice you may feel better. I feel great and only use the advice on this site and self medicate. I have no thyroid either.
they cannot just go by the TSH level, they need to at least do T4,and T3 if you can persuade them, as this is a more reliable indicator as to your levels.I would have thought if you were feeling well on the initial dose,then you will probably be o.k. on Thyroxine alone,and not need the T3,which is a difficult route to go down unless absolutely necessary.
I would see my Doctor again,say you're not well on the lower dose,and insist on a referral to an Endochrinologist.They will be able to do T4 and T3 tests,and can prescribe T3 if it os obvious that you need it.The doctors just fob you off and hope you will go away, but you need to be firm and insist.
Brilliant advice above. I would like to add this. I did an experiment for about 5 months a couple of years ago. I reduced my dose of Amour just to see if anything changed. If it did it would prove that my pituitary was still working (it was). I had a whole spectrum of symptoms. The first of which was a terrible flu followed by weeks and weeks of sniveling, colds and the inability to get off the couch where I lay feeling ill, weak and wrapped up in a blanket. A too low dose of thyroid meds leads to a suppressed immune system - which is probably why you became ill when you reduced your dose. A TSH of .25 is not all that bad, mine has been .002 for about 13 years now, if I reduce my dose to "correct" this on my Endo's orders then I am ill. If my TSH approaches 1.0, which it did during my experiment, then I am very ill.
Read up all you can, get as much as you can from your doc but you must stay one step ahead of him/her. You can achieve this by following the advice on this site and researching as much as you can from research articles you can read from the internet and getting private blood tests as soon as you detect that something is wrong. It's also fine to experiment, I know that sounds scary but you can terminate the experiment the second you have some adverse reaction. If you do this on behalf of your doc you could stay dangerously ill while waiting for your next appointment.
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