Just had yet another phone consultation with my GP at his request. He’s very insistent that I reduce my Levo from 125 to 100 based on my results
TSH 0.128 (0.27-4.2)
T4 13 (9-22)
Not remotely interested in my recent Medicheck T3 4.5 (3.1-6.8) as ‘private tests muddy the waters.’ Requests that he do a T3 test are refused, ‘we don’t do that on the NHS.’ I argue that I feel well and don’t have any hypo symptoms but it falls on deaf ears. I have to have blood tests every 4 months now in order to stay on the same dose but I sense that it won’t last because he insists that my TSH is ‘brought into line.’
I feel so anxious and stressed that I have to deal with this every few months, the fear that he will cut my dose and there’s nothing I can do about it and the frustration that all the doctors in the practice have this obsession with TSH. I’m utterly worn out. No answers I know, just letting off steam I guess!
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Kizzygirl
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This happened to me a few years ago when a new GP because of my suppressed TSH reduced my levo in order to raise it, insisting I was vastly over medicated. The next few years I became very unwell indeed. I had happily gone along with this GPs instructions as I trusted he knew his job. I was not aware of this forums existence at that time and it was only when I did some research after becoming so desperate, I found this site and the answers I needed. A different GP told me that he could not under any circumstance's increase my levo and that he doubted that I would find anyone that would. He told me that if I found an endocrinologist that did then he would happily follow their recommendations. I found myself a private endo who happily prescribed what I needed and my GP follows the endo s instructions . I realise that not everyone is fortunate to be able to see an endo privately but maybe there is an NHS one you could see on the TUK list. Please don't give up. You are already way ahead of where I found myself years ago. You know what the problem is and you must not let this GP make you ill because of his ignorance. Good luck.
Absolutely no way do you need to reduce your dose of Levo when your FT4 is only 30.77% through range. If anything that FT4 result suggests that you need an increase in dose but as you say that you feel well then maybe that's where your body is happy with your FT4.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Your GP's comment that private tests "muddy the waters" tells you everything you need to know about his intellectual abilities and sense of duty towards his patient! You'll never get very far with such a dismissive doctor, so perhaps it's time to look for a new one.
Thanks for supportive messages! If you live rurally as I do then there is little choice of local GP practices and so I have to manage my hopelessly unhelpful and uninformed GP practice as best as I can.
I find the way that some members of the medical profession refuse to become a bit more informed very depressing to be honest. Any papers that I have ever tentatively produced for my doctor’s consideration have been pushed firmly back across the desk without so much as a glance!
It’s hard not to be beaten down, I know I’m not the only one.
Could you change Doctors? Yours will keep you ill making you reduce to a dose that is recommended for elderly people. My Dad is on 100mcg and he is 78 and has COPD so the low dose suits him.
If you live rurally as I do then there is little choice of local GP practices and so I have to manage my hopelessly unhelpful and uninformed GP practice as best as I can.
I fully understand that as I live rurally as well and there is only one GP practice, next nearest is 10 miles away and if you don't drive (I no longer drive) then the limited rural public transport makes it impossible to get there.
Your GP is obviously only going by TSH, most of them do, including mine, which is wrong. I avoid my GP like the plague because all she see is my suppressed TSH, not the actual thyroid hormone levels (FT4 and FT3) that are always within range, so she's constantly telling me I'm overmedicated and should reduce my dose. Fortunately for me the Advanced Nurse Practioner understands that it's the FT4/FT3 levels that are important so he's the only one I will discuss my thyroid results with.
I do understand. I live in quite a remote part of northern England, with just one abysmal group practice I can access. Public transport is very sparse, and even with a car I'm severely limited by distance and terrain, especially in the colder months.
In these circumstances, you may have to do what I've done and seek help privately, at least initially. That's an expensive alternative, with no guarantee that you'd find a private specialist helpful. This is one reason why many of us end up self-medicating, with the assistance of home testing and advice from this forum, or the TPAUK forum, and/or Paul Robinson's website and Facebook groups. There is also the Canadian Thyroid Patients' campaign, thyroidpatients.ca which has a truly excellent blog written by Prof Tania Sona Smith.
Apologies if you already know all this. I've been away from the forum for weeks, so I'm a bit out of touch with recent discussions.
I have the same problem with only one practice available in this rural area. I am sorry to say the only way to solve this is to educate the GP. He wont take kindly to this, but if you show him good research articles to show how wrong he is just going by TSH, he may just understand that not all of us are robots. I dont know if my GP even read the research I printed off and gave to him, but it did show him I had read up on this, and knew more than him. He accepted that I was not thick, had read and understood (most) of the papers, and to leave me alone. I had the feeling he just could not be bothered to educate himself, but as I had he did not want to challenge me!
You could try telling him you are thinking of adding T3 and would he help - I bet he absolutely refuses but then leaves you alone. When you leave the surgery, you may hear him quietly rocking in the corner...
I really sympathise with you over this. I had been happily treated with 75mg Levo by my GP for 3 years. Unfortunately he left and I have seen two new GP’s in the surgery since then. Both of them were paranoid about my TSH result that was 0.36.This is fractions below the ‘normal’ levels the GPS use as a guideline. The level is well above the 0.27 value that Medichecks use and is well within the value given in Dr Tofts paper.
On top of this and most importantly I FEEL FINE!!!
There’s no way I want to reduce my dose as they want.
As advised on this forum I took a copy of Dr Tofts paper in to the GP who looked miffed and said that I would have to be tested again in 6 months rather than annually.
It’s so bloomin annoying!!
As we speak I am waiting for my latest Medicheck results. Hopefully they are as expected and I have an appointment with the GP next week to see if I can go back to annual testing. I’m not very hopeful to be honest.
So good luck to you and keep watching this website.
The ladies on here are experts and honestly keep us all going!!!
It does help to know that I’m not the only one facing these battles. I really don’t have time to keep going for blood tests, waiting in all day for my phone consultation and then doing the whole thing again in a matter of weeks, not to mention the constant arguing and persuading with a doctor who is far less knowledgeable than me on this particular subject! What a waste of NHS funds!
I try to stay well away from the GP if I possibly can and rarely risk going because I know that the conversation will always turn to my TSH as the doctor stares at his computer screen. If only it was possible to dispense with his services entirely!
I’ve no intention of going back for another test and will wait until they begin to hound me again, which they will!
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So tired... 
Normal bloods still so tired 😞
So tired I feel sick !!!!
So tired and at a loss
More results… still tired but so much better 
