Good News update on GP refusing to increase my levothyroxine because of it being in range.

[Huffalump]

Levothyroxine dose - 75mcg

Latest NHS blood results from 25th Feb '25 - taken at 11.15 am (because you don't get any choice of time at my GP surgery!)

Serum TSH - 3.357 mU/L (range= 0.570 to 3.600) 92% through range

Serum free T4 - 11.0 pmol/L (range= 7.9 to 14.0) 51% through range

Serum free T3 - 4.5 pmol/L (range = 3.1 to 6.8) 38% through range

These were my most recent results. Nine days ago, I attended an appointment with a GP (who I'd never seen before) and she outright refused to increase my dosage despite me telling her thelist of underactive thyroid symptoms that I was experiencing and quoting NICE guidelines, (Levothyroxine at 1.6 mcg per kilo of weight and since I am 63 kilos that would be 100mcg) and asking (politely) to trial an increased dose of levothyroxine. She refused to believe the symptoms were caused by the thyroid and eventually said she'd email their endo support but that he'd say the same as her and there was no way he'd increase the dose. After I left she then wrote a stinky report in my notes about the consultation calling it 'difficult' and misrepresenting what I'd said - 3 times claiming that I'd complained about how I'd been diagnosed, monitored and managed by the practice, which I hadn't done, and it left me worrying that I was going to be seen by the practice as a difficult troublemaker.

This forum then gave me lots of helpful advice and support, thanks!

A few days ago, I got an extremely (overly) nice phone call from a receptionist to arrange a follow-up appointment. (Something you never normally get at this practice). Luckily, I couldn't do the day that the first GP was asking for, so was assigned a phone appointment with another GP who was also a total stranger to me.

I've been really anxious about this phone call, certain that the endo (as predicted by the 1st GP) would say 'no'. I read up all the links you sent me, got my maths/physics husband to work out where each result was percentage-wise in the range. Sat getting really nervy, waiting for the phone call feeling helpless and close to tears and hoping that in my anxiety I wouldn't come across as aggressive or difficult when they inevitably told me that they wouldn't increase the dosage.

And then the first words the GP said were, 'The endocrinologist agrees with you and thinks your medication should be increased.' It felt like a miracle!

Anyway, it'll be an extra 25 mcg on alternate days, which I'm happy with to see if it helps, and the fact that they have been willing to try upping my dose leaves the door open (I hope) to them feeling comfortable about adjusting it in the future should the need arise.

She was so nice and chatty that I also addressed the fact that I was unhappy about the remarks made in my notes from the last consultation. She, of course, praised her young colleague, but said it might have been a bad day and that she would try to rectify the impression left by reporting in her own notes that I hadn't complained about my care and wasn't unhappy with the practice. (It appeared that she hadn't even read her colleague's remarks). She asked if I wanted her to speak to the previous doctor. I kind of hope she doesn't, because that will get into her word against mine and who wouldn't spin things to make it look like the patient was being awkward and not her!

Anyway, this is a happy outcome and I'm very relieved and I want to thank you all for your help over the past fortnight. I've learned loads and due to all your information, I am now starting on the vitamin supplementation journey too to optimise how my thyroid and T3 conversion etc works.

Thanks! Huffalump

[GlowCoach Administrator]

Well done you! Just goes to show you need to keep trying.

[SlowDragon Administrator]

Brilliant and well done for persisting

An apology from practice manager or previous GP would be welcome….but don’t hold your breath waiting!

[Janine159]

Hi that sounds so stressful. .I am or have been in pretty much the same situation having to complain that I was being kept unwell from undermedication . When you are going chilled and feeling very unwell and all the Dr had done was see my tsh result and marked it normal on my records in effect leaving me on too low a dose and basically that's it without even asking how I was feeling now. The right dosage will be when I improve enough to get my life back but that doesn't seem to be needed just the adequate reading. Hadn't even checked the t3. or t4. It's all so simple . When it really isn't. Am glad you have received an increase. I did too. After quoting all the things you did. The nice guidelines. Thyroid UK. And how others have felt same and got better. . How I know that this can be caused by low thyroid. Drs who have backed that up.

This Dr did listen and did full blood tests again and vitamins. After all normal she just conceded to trying a increase. For 3 months. I thought I would get alternate days like you as might be better but I am now on 125 every day but not feeling well body aches and walking has gone back to how was so I don't know whether doing right thing they say 2-6 weeks before feel effects so I can only carry on hope you get better soon x

[Huffalump in reply to Janine159]

I'm glad you persuaded the doctors eventually. Disappointing that it doesn't seem to have resolved your symptoms yet. I hope things improve for you soon. I have no idea if my own increase will sort things, but I do feel that I've now set a precedent with them that I asked for something they disagreed with but their endo advisor backed my request, and now it may have opened the door to future adjustments without so much resistance! All the best, Huffalump.

[humanbean]

got my maths/physics husband to work out where each result was percentage-wise in the range.

You don't need to have a maths or physics degree to work out the percentage through the range. We have a couple of options to do it for you :

thyroid.dopiaza.org/

thyroid.chingkerrs.online/

[Huffalump in reply to humanbean]

Thanks, that's really helpful to know!

[humanbean]

it'll be an extra 25 mcg on alternate days,

I would suggest that to start with you split the tablets you get and take an extra 12.5mcg every day rather than taking different amounts on alternate days.

For some people, consistency in dose is really important to their feelings of well-being, for other it isn't.

But I'd definitely suggest starting off with a consistent daily dose first.

[Huffalump in reply to humanbean]

Thanks, I'll do that.

[cyberbarn]

Actually, I hope she does speak to her colleague. That is how doctors learn, and they have to have examples of learning from patients where things haven't gone right. I have sat in meetings with GPs around the table talking about this sort of thing, as well as discussing it with the practice manager when I was a chair of our PPG. In fact the PM liked it when patients complained as it gave the GPs something to use to prove they are continuously improving which they needed to show in order to get through their revalidation!

[serenfach]

I am so pleased for you. Just think, that GP may have got a telling off from the head of the practice (you would never know) and will treat other patients with a bit more understanding. It may have been a "difficult day" for her, but it is not professional taking it out on a patient.

Wait a few weeks and then ask for your notes. If the notes she wrote have no amendments, then I would write a formal letter to request that they be changed. Medical records are legal documents, intentionally falsifying medical records is a form of dishonesty and a breach of professional ethics for which they can be struck off.

If nothing else, it will prevent her from doing it so another patient. Hope you feel better soon.