So, my much awaited endocrinologist appointment finally came yesterday. I took my husband with me, as he has a far more science based brain than me, and can remember all the articles I've given him to read (I read and can't seem to retain information these days.
Anyway, I had printed out all my thyroid blood test results from the last two years since diagnosis in a handy little spreadsheet showing dosage of thyroxine, and also from when I started adding T3 meds last August.
He was very unimpressed I had started on T3 medication on my own (and asked me lots of questions about where I got it, so told him the truth which was that I bought it over the counter in Greece for 2 euros a box!), although listened to what I had to say, and had also read the 5 page letter I sent to my GP last April when I argued for having my thyroxine increased but she wouldn't (she isn't allowed to increase when TSH is out of range according to her), so he did say that he understood why I did what I did. He tried telling me that the relief of symptoms could be a placebo effect (if that was the case then I would have been running around feeling awesome when I added 1/4 of a tablet of T3, and not just feeling semi better but not completely well on the 31.25mcg dose I'm on now!). I've also lost weight (3 stone) because I've been following a low carb diet, which has always worked well for me before in the past, but completely stopped working (as did anything else) when I was on T4 alone. I had to make sure I told him that my husband had lost a similar amount of weight and there is nothing wrong with his thyroid, as he was trying to say it was the T3 medication (it clearly isn't, I've done this diet for long enough in the past to know how it works for me).
He also went on to tell me that my TSH has been supressed for the best part of a year, and that isn't good for me, and that because I'm taking T3 I'm probably going to end up with atrial fibrillation and bone problems. At this point there was no discussing anything with him, as he didn't let us get a word in edgeways.
However, in spite of all this, he said he was supportive of me staying on my 31.25mcg dose of T3, and maybe reducing thyroxine to 100mcg (from 125mcg). I asked if he would prescribe it, as it was my understanding that the protocol was that the endo had to prescribe it for 3 months as a trial before writing to the GP, He then launched into the fact that it was never prescribed at his hospital, he'd tried before but it had always been refused so utterly pointless even trying, etc etc.
What he did say was that he would write to my GP, explain I'd already been taking it, and would she prescribe it, and he would be happy to help interpret the results of any blood tests (!!). I have no idea if the GP will or not, if not does anyone know if there is an appeals process I can go through?
I can't wait to get a copy of the letter though, I'm really interested to know how he'll describe me! Normally I get letters and am described as pleasant, or delightful (I think most people are, it's a code thing to suggest the patient didn't kick off basically!). However, this time I'm thinking assertive? Forthright? Or maybe even argumentative (I tried really hard not to be and actually think I did quite well!).
Anyway, I guess I'll wait and see what happens next, but just thought I'd update on here! Wondering how similar my experience was to other peoples?
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Fluffysheep
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Yes to early as possible, no food or drink. Last levo 24 hours before, T3 was around 10 hours before.
I did put a post up about those results asking for advice, unfortunately I didn't get much response. I was curious, because in January, when I was taking 25mcg of T3 and 125mcg of T4, my T4 was 19 (same range), but since upping the T3 to 31.25mcg and keeping the T4 the same, it had dropped down to 12.
I honestly don't think levo works well for me, on paper my results when I was on 150mcg of levo alone looked really good, however I continued to feel awful. That's the only reason I'm considering lowering the T4 at his request, although this does probably mean I'll need to up the T3. If he ends up looking at the results again in the future, I'm not sure if there is any way to 'fudge' the results of my TSH so I'm not under range. He absolutely wouldn't listen to ANYTHING we had to say about TSH being suppressed being normal when on T3 meds.
I do have Hashimoto's and I've been completely gluten free ( as in treat myself as coeliac so no may contains, my husband has gone gluten free too so no cross contamination etc) since last April, so over a year.
Vitamin supplements I take are selenium, magnesium, igennus b complex (stopped almost 2 weeks before thyroid tests). better for you vit d & k2 spray and L-5 MTHR. Last vitamin results I'd added as a picture.
I tried asking the endocrinologist in so many ways about him prescribing T3 first, as I knew from reading on here that was the protocol. However, he was adamant he couldn't, it's been tried in the past and not allowed, there are no prescriptions for T3 from the hospital (supposedly the board won't allow it!) etc, so he basically denied that it was the protocol. I thought that maybe by him writing to say I had trialled it myself and showed good results might be enough, but it sounds not (which is why I also asked about an appeals process, because although it sounded positive, I don't really hold out much hope).
I'm in Northamptonshire. Hospital was in Peterborough so comes under Cambridgeshire. I did look at the website showing the number of T3 prescriptions each CCG does, both were towards the higher end so was a little surprised by the endo saying no way would it be allowed, as I assumed all those prescriptions would have initially been hospital initiated.
It was quite weird, on the one hand he was clearly a bit annoyed I'd started T3 on my own, and said if he'd seen me before he would have recommended against it (of course!!) but on the other hand he understood that I was feeling much better than I did, wasn't going to argue against me continuing with it, and was happy to give his support to the GP prescribing it (but not the hospital of course!).
In regards to not being able to read the Endo’s letter to your GP. You could read it if you have Patient Access snd find all letters and documents under ‘Documents’. My NHS Endo wrote to my GP saying things that was alarming about myself. None of it was true. I went private for my T3 medication and after a 3 month private trial which proved to be hugely positive and successful to me, my NHS Endo finally and reluctantly prescribed T3 on the NHS to my complete surprise. You asked about a complaints process. There is always PALS to assist you.
Thank you. I should get a copy, the endo confirmed I would and I usually do from other consultant appointments. Worth knowing about being able to view it online though, hadn't even thought of that!
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after my appointment yesterday
Promising Appointment with Endo
INTERESTING appointment with consultant
Endo telephone appointment in morning
Endo appointment today 
