I’ve just found this site and I’m hoping it may help.
I’m tired of coming away from the doctor’s surgery feeling that her instructions aren’t going to make me feel any better. My thyroid gland nearly collapsed in the early 1980’s due to being diagnosed with depression by mistake. The prescribed Thyroxine was introduced gradually and continually monitored. Despite that I unknowingly ended up with hyperthyroidism, losing nearly 3 stone, having boundless energy and actually looking rather good! However, the energy started to reverse and I felt myself getting dangerously sleepy at odd times, like for example, whilst shopping. My thyroxine was reduced and I’ve been on up/down doses ever since.
Recently my doctor lowered the 150mcg per day that I’ve been on for many years. After subsequent checks I’m now on 100mcg/125mcg on alternate days and I know it’s not enough.
My doctor obviously has guidelines and says my bones are at risk with a higher dose. She used to allow me to take a slightly higher dose than the U.K. recommended one but now seems to be less accommodating. Perhaps they’re having to cut down, fair enough, I don’t mind paying the extra to feel ok!
After all these years I know my own body and I’m convinced that I would be better with a higher dose. My weight is harder to control, my emotional state is delicate, I get tired at odd times and my sleep is erratic......
I believe the recommended levels are higher in the USA but I like it here!
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Scotland43
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There's is incorrect current obsession by GP's to reduce dose of Levothyroxine to bring TSH into range
This is wrong for many patients. When on Levothyroxine we often need high FT4 and suppressed TSH in order to have high enough FT3
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018
Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested
Also extremely helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
Post results and ranges when you get them
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 otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Thank you very much for your quick and comprehensive reply.
The answer to most of your questions is no. I’m going to ask for a blood test and printed results. I’m not too sure whether they will do tests for B12 etc but I’ll ask. I don’t take Thyroxine before the test but tI didn’t know about fasting.
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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.
So when I’ve had the tests and they refer me to my doctor to maybe up my dose, will I be, in effect, telling her she doesn’t know her job?
After all the years I’ve known her I will find that hard and a little disrespectful. For a long time she kept me on a higher than recommended dose. She could tell that I was a much happier and confident person. Now it seems she’s buckling under and ‘doing it by the book’. Before I look into private testing I shall plead with her again.
Common when under medicated for vitamin levels to drop
Testing these as well as thyroid is extremely important
Many patients need to supplement regularly, especially if on inadequate dose
Once vitamins are low TSH often drops as well regardless of how hypo you are
So you can help yourself by getting vitamins optimal
Or ask GP to test these please
Your GP is there to advise, not dictate. Your care should be a collaboration between the two of you
Ask for ‘trial’ increase in Levo for 3 months and say that you will test FT3 and FT4 privately at end of the trial. If FT3 is over range then you will reduce dose
One Scottish Lady who has a case before the Scottish Parliament - you may be interested. There was also a debate in Glasgow about T3 - the Active Thyroid Hormone.
All blood tests for thyroid hormones are recommended to be drawn as early as possible, fasting (you can drink water) and allow a gap of 24 hours between dose and test and take afterwards. Also ask for B12, Vit D, iron, ferritin and folate.
Get a print-out of the results with the rangs and post for comments.
Ideally a Full Thyroid Hormone Test should be taken which is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
We have private labs that will do the FTF test and I'll give a link - just in case and if you decide to do so make sure you are well-hydrated a couple of days before.
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