GP disagreement re levo. Plus wondering if FT3/TPO link to Pernicious anaemia B12 treatment?

[Opal79]

Question re changing GP in same surgery and differing GP views. So sorry its a long one, added alot of health backstory incase its useful.

I'm in the UK and was dx hypothyroid last year. Been titrating levo and got to about 1 this spring. Was doing OK, not brilliant and was certin I hahe Pernicious Anaemia too. I have been taking medichecks tests the whole time too. This summer for the first time my TPO was high, so am def hashi as suspected, and FT3 in the lower third of the 'normal' range (which I'm aware needs to be way higher).

Not long after that, and after many symptoms and no luck with GP I went private to obtain a dx of Pernicious Anaemia. He also tested thyroid antibodies and they were still raised so have an extra dx of that.

I've been self injecting Vit B12 nearly 5 months now and it's been quite a rollercoaster with reversal symptoms! Injections also dropped my ferritin quite low early into treatment too, I was deficient rather than anaemic but not well at all. I am optimal in all my B12 cofactors and follow B12 society protocol , D and ferritin are optimal. So, I had an iron infusion with the private Dr, as I knew this would impact thyroid and precent B12 wirking properly too.

(My ferritin is usually always around 100 but only when I take 2 spatones a day, both when I've been on levo and when I haven't. I also suspect hypothyroidism for many many years. I will now be taking Heme iron as dont want ferritin to drop too low again and cant afford another infusion).

Anyway, infusion was 2 and a half months ago but I took medichecks full thyroid panel 2 weeks ago, and my FT4 was 20 (Range 12-22) FT3 still lower third but abit better than before B12 injections, but TSH now 2.3.

So I saw a GP at my practise about this last week, who is new and amazing! She said numbers don't matter and I need to be treated for symptoms so offered to increase current levo from 100mcg to 125mcg.

Don't know why I was nervous but I asked if 112.5 would be better and she said I could if I felt it better to do so, test in 6 weeks and increase again if needed. So I stupidly took the lower prescription 🤦‍♀️ Think I was stunned by a GP that knew about this! (Plus fog lol).

When I saw her, I had been bleeding for about 18 days straight which has never happened, I had 6 periods in 3 months before hypo dx but there were week ling gaps between. But this time it continued, not massively heavy but enough to cause concern. My B12/iron specialist its not due to treatment so discuss with GP.

So 2 days later I phoned surgery and explained I would like her higher 125mcg prescribed dose after all.

They said read have to check with my own named GP who was in that day. Text back says 'I have spoken to the GP who has advised not to alter the dose of Levothyroxine, However we can arrange an appointment with the Dr to discuss?'

Well I booked a phone appt for next week but in the meantime my bleed continued until day 25 and I needed to go in for something else so I managed to book the nice GP again for it! (Own GP not in). Asked for increase and she said yes of course, I then said about the phonecall and she said she can't override my named GP. Which is understandable but I'm gutted and she was clearly annoyed and very apologetic saying I do need it due to my symptoms and tell named GP that. She was visibly peeved but in a tricky situation I guess.

She also took the text to mean to revert to original 100mcg and not the increase to 112.5 but I had presumed just don't raise to 125 from 112.5 so we were both comfused! I have enough for now so am going to do that anyway til I have to see own GP!

My own GP is also new and I've spoken to her once on phone, regarding infertility and also b12 dx and she wasn't brilliant tbh.

Sorry its so long but does anyone know if I can ask surgery to change GP in light of all this? I looked at website and apparently you can ask to change your named GP but it's a case by case basis. Now bear in mind when I was dx and titrated with thyroid I had a GP who abruptly left, (I think she was fed up of surgery tbh!), she was abit clueless but very kind and not dismissive, made lots of referrals for me as I've lots of other things going on, she listened and helped me get to 1 but wouldn't want me to go under. All other GP's there gaslight me so badly and put everything down to anxiety when in truth they've been very neglectful of me and P.A. I'm too ill to complain atm but I might later.

Q. If I see named Gp and she refuses any kind of levo increase, and THEN I ask to switch named GPS, can this count against me? Or should I ask to change drs first then tackle levo issue once I've done that? I don't want to get the helpful GP in trouble and don't want their useless opinions about my mental health clouding her judgment either, or go the wrong way around this. The nice GP was like finding gold dust but she's in one of 4 'teams ' at my practise and the only reason I saw her was due to other urgent concerns to do with breast rash (thankfully all fine). Otherwise I'd usually have to wait for named GP or someone in their 'team'. I so desperately want the GP that follows NICE.

Am so lost in all this! If anyone would like to advise with other things I thought I'd better add that I'm pretty sure I'll need T3 at some point too but so far wanted to see if P.a treatment would have an effect and so far a tiny one. Oddly enough when dx hypo last year my FT3 was in top third despite TSH and FT4 being terrible! I know I need to make new changes and am trying selenium soon to support hashi and T4 to T3 conversion. Am also aware I'll prob need private help for T3 or ndt and can't afford that. So any help getting a gp just to help with levo would be amazing please!

Thanks so much for reading if you got through that 😂🙏

[Hedgeree]

Hi Opal79,

From my understanding you're not tied to a particular GP but can see or consult with whoever you consider most appropriate at your surgery. Obviously open to be corrected if this isn't right.

I don't actually know who my named GP is but recently I had a face to face appointment and due to the nature of my problem asked to see a female GP. There is another GP that I don't get on with so try to avoid him as he has been very dismissive of my thyroid issues (probably my named GP!)

I prefer that any initial contact with my surgery is now done online through PATCHES (used to be called e-consult) that works well for me as the less face to face contact there is for me all the better!

Sorry I can't help with your other queries. Good that you've found a GP that understands thyroid issues 😊

[Opal79 in reply to Hedgeree]

So sorry I completely missed your reply! Thankyou so much , I'm going to try changing named GP's. It may be tricky due to being in different teams but worth a try. So sorry you've had such a nightmare with yours too, I don't think my surgery does econsult but I'm totally with you on saving energy on that score! Thanks so much again 😊