I posted the other day about being under medicated. TSH 4.91 (0.46 - 5) T4 12.2 (12 - 22) T3 1 (0.9 - 2.8).
Spoken to the doctor this morning and she has very reluctantly given me an increase from 100mcg levothyroxine to 125mcg with a review in 6 weeks. She said that the TSH is within range and the symptoms I am describing (stiff/swollen joints, weight gain, tiredness, heavier periods etc) could be many other things. I referenced all of the advice I was given from the kind individuals who replied to my post, that the TSH should be in the lower half of the reference range and that even my consultant had previously expressed that he wouldn't be concerned if my TSH was suppressed if T4 and T3 were within range. He expressed this in one of his letters to my GP and asked for my T4 and T3 to sit at the top of the range which is where I feel most well. The GP wouldn't have any of what I was saying and said that some people have a TSH even higher than the reference range and that can be normal.......(I tried to explain that that doesn't apply to someone who is medicated) Needless to say, I will be asking to speak to another GP next time but if after the 6 weeks my TSH is too low (but T4 and T3 are in range) I'm worried they will just take me off the higher dosage. Feel in such a mess. Has anyone had an experience like this? I'm wondering whether I can ask to be referred back to the specialist so he can reiterate his opinion back to the GP?
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BBoopie
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I was brought up in a business and my father had a knack with difficult customers. He always spoke very slowly to them always calm and with a smile too. Perhaps ask her the question with a smile and slowly if her job entails making you feel ill or keeping you feeling well. The GP's in the UK are very highly paid and most of the female staff only work 3 days a week for around £60,000 per year. The most important thing is to repeat your question a few times more if no answer is forthcoming and insist on an answer.
I have used this method all my life, and it usually works especially appealing to their good nature. The method is to make the other person feel very uneasy.
even my consultant had previously expressed that he wouldn't be concerned if my TSH was suppressed if T4 and T3 were within range. He expressed this in one of his letters to my GP and asked for my T4 and T3 to sit at the top of the range which is where I feel most well.
This will be on your records. Ask the GP to look at this letter and follow the endo's recommendations.
When did you last see the endo, do you get follow ups?
You could contact the endo and explain that the GP is not following his recommendations and will he guide the GP on how he's said he's happy for you to be dosed and where he's happy to see your results.
Thank you. I too feel better when my T4 and T3 are at the top of the range. It was late 2021 when I last saw the endo so quite a while ago. I read the letter to the GP and she completely dismissed it! I referred to the information that you kindly gave me and she took none of it onboard. I was left feeling completely unheard, especially when she said that my symptoms could be many other things!
How would you go about contacting the endo? Are you able to write/email without being referred back? I was discharged at the end of 2021 but he said he would be happy to offer advice in the future….
I read the letter to the GP and she completely dismissed it!
Was this a letter to you? Did the GP not have a copy of this letter, it's usual for a consultant to follow up with a letter to the GP with a summary of the consultation and they tell them of the proposed treatment or discharge or whatever.
You could have the letter copied and ask for the copy to be put with your records.
I was discharged at the end of 2021 but he said he would be happy to offer advice in the future….
Ah, so there you have an invitation. First thing I would do is contact the endo's secretary and explain the situation, they can be very helpful.
The letter was to the GP and I was sent a copy so she could have looked at it on her system if she was interested…either she has little understanding of the subject or she just isn’t bothered?
You are right, I will dig out the email and contact him through his secretary.
I'm afraid in primary care doctors tend to dose and monitor on just TSH readings with the occasional Free T4 thrown in - and very rarely is a Free T3 is run by the Laboratory.
I believe this is all a cost cutting exercise - just getting 1 blood test instead of 3 processed - with patients who are unwell eventually finding a thyroid online platform, learning it is not all in their heads, and forced to pay privately for the relevant blood tests.
Then if necessary, as advised by the thyroid forum to discuss further with their doctor and hopefully force the NHS to run the relevant tests - as the NHS is not obliged to accept private blood test results.
A TSH seen is isolation, once on any form of thyroid hormone replacement is not a reliable measure of anything and especially so with Graves Disease as no matter which treatment option you may, or may not have gone through to now be classed as hypothyroid - you can't eliminate the Graves antibodies that may still circulate within your blood and attach themselves to TSH receptor sites.
Graves is an auto immune disease and the cause one of your immune system malfunctioning and attacking rather than defending you body..
We generally feel best with a low suppressed TSH and with our T4 in the top quadrant of it's range at around 80% as this should then convert to a decent level of T3 tracking slightly behind the T4 at around 65% through it's range.
Which treatment option for Graves did you decide on - or did the Graves simply burn itself out leaving you totally exhausted and hypothyroid ?
When metabolism is running too fast or too slow, the body struggles to extract key nutrient through food, no matter how well and clean you eat and existing core strength vitamins an minerals can tend to nose die through the ranges and compound further you ill health.
In order for T4 medication to work well and convert in the body into T3 the active hormone that runs all our bodily functions we need optimal levels of ferritin, folate, B12 and vitamin D - so it would be wise to get these blood tests run and we can advise on the optimal levels needed for optimal conversion of T4 to T3.
If you do not know of Elaine Moore and her books and website on Graves Disease - you might like to dip in - elaine-moore.com
Thank you pennyannie. I was diagnosed with Graves in 2009 and was on and off Carbimazole until 2020 and then the Graves burnt itself out and I ended up being diagnosed hypo.
The next port of call will be to speak to a different GP and ask for those other bloods to be done (B12, vit D etc) and also see if they will refer to the letters from the endo specifying my T4 and T3 to sit at the upper end of the range. I don’t think I have ever felt so dismissed by a GP before but I understand that a large proportion of GPs don’t seem to have good knowledge of thyroid levels in diagnosed patients.
Take another copy of the letter and ring round the important bits in RED. Then show it to the GP. You left much to early if you had sat it out with a smile she may have wanted to get rid of you.
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
Thank you ☺️ I will give those a good read through. I’m not usually very well organised with paperwork but I am so glad I have all the correspondence from the endo.
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I increased my meds myself.
Downward trend of T4 and upward trend of TSH, but doctor reluctant to prescribe thyroxine 
Thank you Thyroid UK community because I've been given a T3 trial and it's because of your help
Fluctuating TSH should I increase meds
