GP just phoned

After having explained that my blood tests were in range but my TSH was 3.1 and T4 of 14 and the range of symptoms J had been suffering with and her prescribing me Levo 3 weeks ago, the GP wanted me to drop off my Blue Horizon tests which I did.

She phoned this morning to say "they are normal" I said yes I'd rold you that but I've been suffering with symptoms and the Le obhas actually been helping, I've even had days where I'm not ice cold all the time.

She said under NHS guidelines she could get in trouble for me being on Levo when I'm in range....

I have my referral oend April sk she said wait fir that but to also have a NHS antibodies test.

I'm gutted. I thought she understood the situation amd now they will take me off Levo which has been helping me.

I'm going to have to go private aren't I?

15 Replies

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  • What was your TSH when she prescribed the levo? Why did you have labs done after only three weeks on levo?

  • I had a full blood test at GPs and my TSH was 0.87 then i paid for the BH test because my GP test was near lunchtime and I'd eaten. My BH test was 3.1 so armed with a list of my symptoms I'd phoned my GP asking for a trial. She prescribed and asked me to drop my results off.

    It's only now that she's phoned and I've been on Levo for 3 weeks

  • Ah, ok. Sounds like someone's been getting at her!

  • That's what I think. :(

  • Ridiculous not to have you on them for at least 4 weeks.

  • Skyrocket,

    If NHS stops your Levothyroxine some private doctors will prescribe when TSH is >3.0. Alternatively you can buy Levothyroxine online without prescription.

  • Thanks Clutter. There was a Dr im Harrogate on the list Louise sent me so I'm going to try and get a private consultation with him.

    Could someone pm me where I can buy Levo without prescription please? I'm only on a tiny 50mg but I've been having days where my hands and feet aren't ice cold and my brain fog was starting to clear. I was so pleased to be on the road to feeling normal and the thought of going back to the exhaustion i felt before is miserable

  • If I remember right isn't there hypothyroidism in your Family? If so could you argue that, given your symptoms and the hereditary link, and that you have already started to respond to treatment, that you should continue to take the levo. Also where in range - top of TSH and lower in FT4 and FT3?

    I could be wrong here, but don't tell them about dietary changes and supplements as I suspect that'll be used against you, and they'll reason that has caused the improvement. Perhaps I'm being cynical, but once it's out, you can't take it back.

    Also, I thought one of the Admin team posted something recently about patient led treatment? Another piece of ammo to keep the levo. You are seeing physical improvements.

    I wish you well 😚 - I'm back at GPs next week for follow up tests and am starting to feel I have to argue the case for an increase. It really shouldn't be this way.

  • No you aren't wrong about the dietary changes and supplements. Lots of signs and symptoms can be attributed to vitamin and iron deficiencies so it is best to say nothing to them about it.

  • I'd been supplementing the Vit D and B12 for a few months before Xmas because I felt so rotten and hoped I'd feel better so my levels are good for those but they didn't help really with how I feel.

    I guess the only good thing is I didn't mention dietry changes on the phone this morning. I wasn't expecting the GP to do a complete about-turn on what she said a few weeks ago

  • Hi Solstice!

    Yes my mum has Hypothyroidism and was diagnosed not all that long ago after suffering huge hair loss and weight gain amongst a raft of other symptoms, and my Grandma has exactly the same symptoms but I don't think she has been diagnosed yet (although she might have, I have to ask her)

    I did say to the GP this morning that I was starting to see improvements in the iciness and if I was in a different country they'd be treating me. I pointed out that my T4 was low but she didn't think it was :(

    I don't know why she's 360ed because she was in agreement a few weeks ago.

    I said that the blood test results were just a part of the picture anyway and my symptoms were there. I'd printed off the symptom list (which I ticked for my symptoms) from the ThyroidUk website and handed those in at the same time as my BH blood tests.

    She kind of dismissed that and said I had an appointment to see the Endo and we'd see what he said :(

    I had posted the other week asking if anyone here had him and no response and he's not on the list of amenable Endos so I don't hold out hope there.

    The only thing she said was to have another antibodies test.

  • She's worried about being disciplined or struck off. Doctors have a fitness to practice check every 5 years and so have to go by the NHS guidelines.

  • Yes I read that somewhere. She is really nice and I know her hands are tied, it's just so frustrating that my blood tests seem to belie how ill I've felt and to begin feeling better after feeling so ill for ages, well I finally felt like there was light at the end of the tunnel - and now they are bricking the tunnel up!

  • My BH results were:

    TSH 3.17 (0.27-4.20)

    Free T4 14.92 (12-22)

    Free T3 5.16 (3.1-6.8)

  • Is it worth getting a telephone appointment and asking her directly why, having given you a trial of levo, she has decided to withdraw it? If it agrees with you and you are seeing and feeling improvement? Surely the trial is precisely for that reason! Be bold, I know easier said than done.

    From what I read on here good Endos are a rare breed. I so hope you don't have a wasted appt. Some consolation that you can buy your own, if it comes to it, but honestly it's cruel to do what she has done - guidelines or not. However, it has proved the point, as you are starting to feel better, and I hope that gives you the will to fight.

    Best wishes with a good outcome and sorry that you have to fight this battle :(.

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