I’ve had my thyroid removed several years ago now and the doctor has just done a blood test. Again they have only done TSH which has come back as 0.07(range .03-5.5)
The message I’ve had from them is that I’m over medicated (currently taking 150mg of levothyroxine) and they want to discuss reducing it!
I am constantly tired, fighting the weight gain, I can’t control my temperature at all and have muscle aches and pains in my arms.
I know TSH alone is useless but can’t remember the ins and outs of it. Can someone give me some pointers for when I talk to the GP. I need them to understand how i feel and get them to take action
Thank you!
Written by
keb5332
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You are not alone. I have similar issues and try to get Doctors to understand that I am more than a blood test. Years ago, Doctors used to test more than your blood, your symptoms, reflexes, look in your eyes, examine your throat and much more. I am a poor T4 to T3 converter. There isn't one medication that cures it all. I am in the UK at present and buy my own thyroid tests as my GP only does the TSH T4/T3. Find a good endocrinologist - it's worth paying for it. Also try and anti-inflamation diet, it helps me a little.
In primary care it seems most doctors are only able to get TSH thyroid blood test results and seen in isolation, a TSH mean absolutely diddily squat :
The computer just spouts out this information, and doctors seem to follow this guidance blindly and do not take into account the patient's medical history.
The TSH was originally introduced to help diagnose hypothyroidism and it was never intended to be used once the patients was on any form of thyroid hormone replacement.
Since you haven't a thyroid it is essential that you are dosed on your T3 and T4 blood test results and we usually feel at our best when both T3 and T4 are in balance in around a 1/4 ratio T3/T4 and with your T4 likely in the top quadrant of the reference range.
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 and the active hormone which is the fuel the body runs on. T3 is said to be bout 4 times more powerful than T4 with the average person needing to utilise / need / convert / find around 50 T3 daily just to function.
Your ability to convert T4 into T3 can be compromised by low vitamins and minerals and it's necessary to maintain ferritin, folate, B12 and vitamin D at optimal levels.
Considering you have lost your own thyroid and on monotherapy with T4 only mediation you have in effect been down regulated by around 20 % of your overall well being by not replacing the T3 your own thyroid once supported you with.
Some people can get by on T4 only, some people find T4 seems to stop working well for them and needs the addition of a little T3 along with their T4, some people need to take T3 only, and some people take Natural Desiccated Thyroid to restore their health.
I'm with Graves and post thyroid ablation in 2005 becoming very unwell around 8 years on and found myself looking for help on the forum. I was refused both NDT and T3 by the NHS in 2018 and now I self medicate and do it for myself and am much improved taking NDT .
Refuse to reduce dose until you get FULL thyroid and vitamins tested
If Ft3 is not over range you’re not over medicated
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
After thyroidectomy it’s common to need addition of small doses of T3 prescribed alongside levothyroxine if Ft3 is too low
First step is to get full testing done
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with poor conversion of levothyroxine (Ft4) to active hormone (ft3)
Approx how old are you?
Male or female?
Approx how much do you weigh in kilo?
Guidelines on dose by weight is 1.6mcg per kilo
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
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