GP appointment tomorrow....confused!!

My GP reluctantly agreed to let me follow Dr Skinner's dosage instructions providing I had a blood test after 4 weeks. I've had the test and have to see him tomorrow to review. I was due to increase to 75mcg yesterday and am a bit worried that my GP might not agree with this. Can anyone give me any advice on how to tackle this? I can't say I feel any better or any worse on Levo up to now. As Dr S doesn't appear to respond to phone calls I feel like I'm on my own and am a bit worried things might start going wrong, as people always seem to really rate Dr S's methods but I may not be allowed to increase my meds. But on the other hand, I'm not sure whether I need to!! Help!

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  • I'd wait and see how thetests results turned out first before making decisions on how to proceed if it were me.

    Assuming they are looking good then I cant see why the doctor wouldnt let you carry on with something that appears to be working.... but then who knows how a doctor thinks :/

  • I get the impression that if the results are good he might just want me to stay on the 50mcg, and from what I understand, people who stay on the same low dose for years don't get any better. As I say, I don't feel much different except I am constantly hot. When I say hot I mean when others say "yes it is quite warm" I have rivulets of sweat running down my back...it's horrible :-(

  • Intolerance of heat such as you describe can be a hypo symptom. Susymac's advice to you is good, Post the results here when you have them.

  • Why don't you phone the surgery and ask the receptionist to read your results to you over the phone and you could also post them on here for advise before you see the GP tomorrow.

    Moggie x

  • Good idea Moggie :-) I just rang and they told me TSH=4.15 and T4=16.1 (T3 not tested unfortunately) which doesn't sound that great to me? Any advice would be gratefully accepted! Thanks.

  • Shame you don't have the ranges so I won't comment on T4 but the TSH is too high for someone on thyroxine. Be prepared to challenge just in case your doctor just says the results are normal. It could help if you go prepared with the extract from Dr Toft's little book where he says hypothyroid people on treatment often feel best when TSH is 1 or below and FT4 at the top - think that is right. I'm off to work now so can't find it for you to check the exact wording but do a search on here and have it ready with you to back up your argument if needed. They can't argue with it - Toft is one of them!

  • I've googled Dr Toft but can't find that extract, but did find things where he doesn't seem to be flavour of the month with some patients? Even Thyroid UK don't agree with him? I'm dreading this afternoon as I don't feel I have enough knowledge to have a set to with my GP! The more I read about T3 though I am really starting to think it's what I need yet the nurse wouldn't even test me for it saying that the NHS don't have the resources :-(

  • Email me for the quote - louise.warvill@thyroiduk.org

    L

    x

  • Hi Carole...good luck with your appointment, I cant even face a visit to my GP at the moment, it's like bashing your head against a brick wall. I'm reading 'Your Thyroid and how to keep it healthy' downloaded from Amazon. full of information, it's all so very complicated and what seems to work for some doesn't work for others.:-(

  • In your shoes I would be asking for an increase. This is a good time to have Dr Toft's book to hand.

  • If only I could get a copy by tomorrow :-)

  • Look for it online im sure you can get it as a pdf somewhere, I think!

  • Dr.Tofts book is sold in my local chemist - see if it is available in yours. Sorry I didn't comment on your results, which as you have been advised above, are two high (your TSH) but I'm very busy at work at the moment and only popping in and out the site very briefly.

    Moggie x

  • Hi Carole...I find it's a guessing game and will I ever get it right. After my consultation with Dr S I went from 100 to 150 and was pleased with the results, mostly sleeping better. Then went to 175 as he suggested, who knows if it was due to this increase but my insomnia started again so I dropped back to 150. I manage to sleep however it takes a long time and not enough, I have headaches again, sweating a lot of the time and yes rivulets on my face, and for the first time ever crumbling nails and also puffy under the eyes plus the terrible stiffness I just don't know what to do next, I feel I will never feel good. Don't know if it's worth seeing Dr S again. Be interested in hearing what your doc says Carole, that TSH does seem very high. I suppose this is a slow process...a nightmare !! xx

  • That's not very encouraging news Elspeth-I bet you're fed up. I thought seeing Dr S was the magic bullet...but it seems not :-( I'm trying to convince myself I'm going to be one of the lucky ones (and I might still be) for whom Levo is going to be the cure...but the tricky bit seems to be finding the correct dose. Why not try writing to Dr S? It seems a bit off that after paying so much for a consultation there is no "after sales service"! xx

  • When you get your own copy of your blood results from your surgery, can you fax them or post a copy to Dr S for his comments (as well as one on a new question on the forum). Someone usually rings you after Dr S has been consulted.

    If your GP has agreed for you to follow Dr S for the time being, he should allow a discussion between you and Dr S before he makes any decision.

    A quote from Question 6 of the email louise will send you, should give your GP all the information he needs. In fact, copy the whole article as he can learn a few things about treating thyroid gland problems.

  • When you get your own copy of your blood results from your surgery, can you fax them or post a copy to Dr S for his comments (as well as one on a new question on the forum). Someone usually rings you when Dr S has been consulted.

    If your GP has agreed for you to follow Dr S for the time being, he should allow a discussion between you and Dr S before he makes any decision.

    A quote from Question 6 of the email louise will send you, should give your GP all the information he needs. In fact, copy the whole article as he can learn a few things about treating thyroid gland problems.

  • Thanks very much Shaws. Sorry to be a bit thick but when you say "someone usually rings you" do you mean someone from Dr S's clinic after I've given them the results? The info in Question 6 is very helpful as I really feel T3 would be good for me. My "problem" has always been that although I have some awful symptoms I am generally well so it's a little more difficult for me to demand things from the GP as I always feel he'll be thinking I'm a hypochondriac. From what Dr T says in Q2 as I have antibodies and am just out of range I have the mildest form of Hypothyroidism-could this be why I am not as poorly as some people?

  • Yes, someone from Dr S's office will ring you.

    You say you have awful symptoms so you really want to be rid of them although you also say you not too poorly. The fact is you don't want to be poorly at all and want rid of the symptoms. Some GP's wont prescribe T3 (expensive? - who knows the reason).

    Levo made me more ill but I did feel so much of an improvement when T3 was added but everyone is different, unfortunately, and what suits one doesn't suit another - it's all trial and error.

    I hope you benefit from your increase soon.

  • Me too Shaws, thanks :-)

  • Aw well...another disgruntled GP to add to our lists! As my TSH hasn't gone down he suggested upping Levo to 75 (which is what Dr S had suggested so I was fine with that), He asked about my weight and seemed shocked when I said I'd put weight on (!). And then...I mentioned T3 and it all went pear-shaped! He said,quite firmly, that the NHS do NOT test for T3 and do NOT prescribe T3 as it's not necessary as Levothyroxine is the only drug that anyone needs. At this point I dug out the Dr Toft stuff (kindly sent by Louise) and calmly said I'd leave it for him to read. He said he would but reiterated his stance on T3. I do sympathise with him a little as I'd hate anyone to tell me how to do my job but really....how can people have so little interest in widening their professional knowledge? Especially when their profession is trying to make people well??!!

    I will be moving house shortly so hopefully will get a GP who is more inclined to think outside the box - but I'm not holding my breath. The bottom line is I don't know at this point if I do actually need T3 (hopefully not!) but why do the NHS dig their heels in so much when there is so much evidence that T3 helps people?

  • ...for those that have conspiracy theories - it is thought that keeping people unwell keeps Big Pharma going with treating all the various ailments instead of dealing with the underlying causes ! Possibly in the same way that millions and millions are poured into Cancer Research and still no cure. Again it is good business for Big Pharma so not much spent on Prevention....

    I have read that some people on this forum have offered to pay for their FT3 test when the others ere being done by their GP. Possibly cheaper than having it done elsewhere.

    Hope the move goes well and you find a Doc that suits.....

  • Thanks a lot Marz :-) I completely agree with you. I have little faith in the NHS and really feel in most cases if you want anything other than tablets you have to pay for it. It's really annoying isn't it? For what I've had from the NHS over the years I think I am due a rebate!!

  • ...what a nice thought - a rebate ! Have to say I was well served as a hospital case back in the 70's but mostly you are on your own when it comes to the more unusual/chronic......

  • This information which I sent to my GP ahead of my appointment got me an increase in thyroxine. I also took along Dr Toffs book with me (waterstones £4.99) and she agreed straight away.

    endocrinology.org/press/pre...

  • That's very interesting Yana, and a really good way to go about it. I will definitely try this in future :-)

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