To not follow GPs advice?

[Rainbowhairdontcare]

I'm 9 weeks pp, and currently breastfeeding. I'm on levothyroxine for being hypothyroid. This was discovered by my usual endocrinologist in the US, and he has overseen my treatment and my GP surgery here has always been happy to oblige. A couple of weeks ago I had my test results and the GP said to lower my dose. I sent the results to my endocrinologist who said I shouldn't as I'm still breastfeeding and it's best to keep them that way. I'm on two kinds about it because usually I come back with my own set of bloods done and the endocrinologists advice but this time they've both seen the same results and it would be the opinion of one against the other. I feel like my endocrinologist knows my clinical history better and he's always been better at planning for the future. AIBU of following his advice rather than the GPs?

@BellsAJingleTheRoastedChestnut the problem is, when breastfeeding under-medicating can cause issues - namely with milk supply.

kellymom.com/health/mom-health/thyroid-faq/#safetyhypo

The medication is definitely the same. I've been ok with just telling the GP what the endocrinologist said for the past 5 years, but it's also the first time they contradict each other

I'd go with the specialist. They undermedicate here.

Thanks @TuckMyWin! I would still speak to the GP again before taking the advice of a US specialist, personally. The GP could easily be an idiot, officious sergeant major, but equally, there could be a pretty good reason they are advising to reduce. Better to clarify and I'm often a little wary of US doctors in general, due to my childhood there, where intervention and medication seem to be quite ott.

I'd definitely take the advice of a UK specialist over a UK GP though. I just think it's strange to bother with the GP here but also taking the advice of the specialist in the US. There are bound to be mixed messages. I'm actually surprised the GP has been willing to write out every prescription without question until now. Or maybe it's that they're doing their job properly and think now would be the time to reduce.

As it is, I now wouldn't feel comfortable taking either one's word for it if I were the op and would be shelling out for a specialist. Because of the mixed messages. I wouldn't feel comfortable.

I think there's a good chance the GP will agree with the endocrinologist anyway if told that they disagree. Chances are the OP is borderline and he is erring on under medicating but would be happy to be told a specialist thought otherwise.

"Bella* they usually agree because whenever I've done it I've had my whole blood panel done in the US. They usually ask for a copy and agree with my endocrinologist.

I haven't been back (will do in March and I'll have my bloods done again). So they're both basing it on the TSH and T3.

My endocrinologist sees my whole family and was able to diagnose that my miscarriage and TTC difficulties were down to my hypothyroidism

Yeah, I'm sure you're right tuck. But I'm a bit cautious with this sort of thing, so I'd probably try and clarify either way with the GP and probably keep things as they are until I could do that.

IMO ‘Specialist’ advice trumps ‘General Practitioner’ advice.

You need a higher dose of Levothyroxine in pregnancy. Your maternity care will be consultant led once your GP refers you to midwife.

OP, can you ask for a phone call with the GP to discuss? They're going to need to agree for your prescription to be correct, anyway.

GP's are generalists. They don't necessarily know the ins and outs of thyroid dosages needed in pregnancy and when breastfeeding. I was diagnosed by my GP in pregnancy as 'borderline'. He told me I had antibodies, and would need treatment at some point but not then. After that pregnancy I found out that whilst I was 'borderline' for a non pregnant woman, as a pregnant woman I absolutely should have been medicated. I was lucky, I didn't have a miscarriage. In my second pregnancy I quoted NICE guidelines at him and he was happy to agree. Sadly, my experience is that most GP's know little about the specifics of hypothyroidism, and you pretty much have to manage your own condition, and treat what they say as the beginnings of a discussion about it, not necessarily the final word. It works the other way too- my Mum was over-medicated for years by one GP, until he retired and another GP took over and promptly decreased her dosage.

OP, in the nicest possible way; why are you even asking on here? You seem utterly convinced that the specialist is right and the GP is wrong. If that's your instinct, knowing the specialist well and having a long history with them, then there is your answer.

If you see no point in going back to the GP to clarify or to see another specialist, as you have full faith in the US one, then great. Do that ! Genuinely mean this kindly and I know it's easy to start questioning your decisions when you're sleep deprived and bfing etc. But tbh, if you're convinced, as you seem to be, I don't see any point in going over it on here. Either go back to the GP, see another specialist or follow the advice of your specialist in the US. For all my general wariness of US medication, I definitely recognise that a specialist who you clearly trust and who you say k your most recent posts, knows your history inside out will be better placed to advise you.

I don't think either could be right or wrong BTW. My TSH is very very low but my T3 isn't (well within range) and that's why I'm wary about keeping the same dose, but I don't understand it enough and I would think the specialist would. I also feel like it's like starting a fight with the GP (could be completely wrong here). As a PP has mentioned I've read that there are more issues about undermedicating than the opposite.

Why are you splitting your care between the US and UK?

There will be a different approach to investigating, monitoring and treating conditions between the two countries. You may be better off picking one country and receiving all your routine care there.

For what it’s worth, TSH is the blood test that NICE’s national guidelines recommend should be used to monitor treatment. I’m not sure what other tests you think they should be doing at this point?

If your GP is the one prescribing, you should follow their advice. If you don’t want to follow their advice, you should discuss it with them first.

I think, honestly, I would go back and discuss with the GP if you can. I don't think it was very good that they passed the message on via the receptionist as they have clearly left a lot of questions unanswered. There may be a good reason the GP wants to reduce and it would be good to hear that, or else it might be as tuck says and once you explain what your specialist as said, they might have second thoughts. Who cares if it's ever so slightly confrontational (and it doesn't have to be)? It's your health, so I wouldn't avoid a pretty necessary discussion out of politeness iyswim.

There is a condition called Postpartum thyroiditis - which can lead to temporary hyperthyroidism after a birth. However, if you've been HYPO for many years it's not likely you've got much of a thyroid left to do this.

For routine monitoring in the UK it is usual to only measure TSH and T4. How low was the TSH and how high was the T4?

I'd stick with the US approach. Had the same issues with one of my children. His care is all handled there. They were fucking useless here. He's so much better on his medication.

As you can see TSH is very low but T4 is within range

I think that's one for the specialist not the GP. It's a slightly unusual pattern. The specialist will know your history (i.e. the cause of your hypothyroidism).

It could be that you had elevated T4 during the preceeding months but it's now settling down. It could take a while for the TSH rise.

P.S. the results could make sense if your hypothyroidism was originally "central" rather than something like Hashimoto's. But your specialist should know your history.

I don't have Hashimotos just "normal" hypothyroidism

Hi OP - I have the same problem as you and I work at a GP practice (not clinical) so hopefully can help as an unbiased view!

I usually say listen to the GP - but they are NOT specialists in endocrinology and they are not 100% up to date with all of the latest papers - they are specialists in generalism which is why we have consultant endocrinologists.

My own GP(not where I work) is very self righteous about my thyroid function and I usually end up emailing my endocrinologist (who is the specialist) for the best advice and I ask the endo to write to the GP. My GP is insisting on a 4th blood test following a small increase to my levothyroxine, even though last one was within range.... I humour him as my specialist advised me not to alienate the GP!

That said, not all GPs are like this and will listen. How are you actually feeling? I get hand tremors, shakes and heart racing if I take too much levothyroxine - the GP is looking out for your best interests as too much can affect your bones and other areas, too.

In summary - get endo advice and ask them to write to your GP.

I feel absolutely fine! Which is partly why the endo thinks the dose is the correct one. He basically think I would get the symptoms you describe if the dose was out of whack

Go with your endo! :)
I have just requested a repeat for an extra 25mg which I take every other day and my GP wants another blood test - never asks about my actual symptoms...

I have hypothyroidism too and did once disagree with one gp what my dose of levo should be and stuck to my guns and i was right .Gp's here are honestly not that brilliant with hypothyroidism and just go one the basic tsh test which only really shows part picture .I would go with the endo .My gp now is pretty good they go on how i feel now as well as my tsh mine is nightmare goes up and down .

We've had bad advice from a consultant when the Gp was spot on about not reducing meds so it's not automatic that the specialist is wright