disagreement with doctor

I hypothyroid after having RAI. eventually put on levo but it made me gain weight and decided to try ndt. it took a while to get my tsh readings down from 6 but eventually they are down. however, my doc is not happy with my tsh as he says it is too low. told him as long asmy t4 and t3 were okay I was not worried as I felt okay and had managed to go back to longer working hours (I am 65). He said it used to be the case that a suppressed tsh was okay but not anymore as it could lead to osteoarthritis. he said he was puzzled by my readings (he thinks I am taking 100 levo but I am taking 2 grains of thiroyd). He asked me to produce research or papers that said a suppressed tsh was okay. I asked him to produce papers to say it wasn't . anyway he conceded that as long as I was feeling good then to keep on taking 100 levo and to get another blood test in 2 months time. I am posting my readings below. do you think I should decrease my ndt to 1 1/2 grains to see if that would be better as I do feel a bit hyper

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  • sorry forgot to post my readings as follows:-

    tsh 0.02 range 0.22 - 5.0

    t3 1.6 - range 0.2 - 2.5

    t4 10 - range 9 -20

  • You don't appear to be overmedicated actually, so I'd stick on your current dose if you feel well. There's actually room for an increase if you felt raising half a grain might help. When on T3 containing medication the only test result that gives clues to whether your dose is right is FT3. It's not over-range, so you aren't overmedicated.

  • that's what I tried to tell him but he totally dismissed the t3 and t4 and said they were in range but that was not a good tsh - he tried to quiz me asking me things like have I lost weight - I told him no, I wish! he asked me if I had diarhea - I said no, I am slightly constipated. I knew he was trying to establish if I was hyperthyroid (overmedicated) so I told him I was hyperthyroid until I had RAI and that I knew what it was like to be hyperthyroid and how ill I was when I was hyper. I think that is the only reason he reluctantly told me to stay on the dose I was on

  • Was it Graves? The other thing he obviously doesn't know is that some people with Graves will never have a normal looking TSH, even when their FT3 and FT4 are in range. It's a known phenomenon.

    Sigh. They don't understand. TSH isn't actually a thyroid hormone and it's nowhere near as accurate a measure as they've been trained to believe. Doesn't really tell you anything once someone's on thyroid replacement hormones. The normal feedback mechanism's bypassed when you take thyroid hormones, so what the TSH reading is becomes irrelevant (unless you're undermedicated - in which case it'll rise. Though in someone who had Graves, not necessarily...).

  • no I don't have graves. I had to have rai as I had a large hot nodule at the side of my thyroid. I have two smaller nodules one of which was growing and they wanted to surgically remove it but I refused and asked them to leave it until my next scan in 6 months and lo and behold after being on the ndt the nodule has shrunk a lot so much so that I don't have to have another scan for two years - I used to have them every six months.

  • is that free t3 or t3 being testing, important to be the frees

  • this TSH obsession is crazy

    refer your GP to Prof Colin Dayan at Cardiff he knws very well that if a patient is giving either t3 or NDT the thyroid pituarity feedback loop is satisfied so the TSH will be zero

    My husband has been on NDT for 12 years and prior to that t3 and before that levo

    after Surgury or RAI very often the only way patients feel well is on NDT and if they were originally Graves Hyperthyroid then their body is so sensitised to high levels that it simply cannot function on so called "normal " levels you have to simply treat on symptoms

  • I think the doctor means osteoporosis, not arthritus. And here is a paper which says supressed tsh as a result of. taking throid hormones dooes not give you osteoporosis.

    ncbi.nlm.nih.gov/pubmed/825...

    If he does mean arthritus, ask where he has got his information from? Maybe he cant read his own handwriting? Xx

  • Thank you for the link. will print it off for him as he did ask me to back up my tsh reasoning lol. the doc did say osteoporosis - I obviously typed the wrong thing.

  • Rubbish! Supressed TSH happens with ANY sort of thyroid replacement hormone and is not 'Old fashioned' stick to your guns, you are feeling OK and thats more important than numbers!

  • Looking at those numbers you could increase if you wanted to. Your freeT3, the important figure, is far from the top of the range.

  • i no but I'm scared to as I feel hot and headachy sometimes - a feeling I had when I was hyper thyroid but as you say my t3 just slightly over middle and I still cant lose weight. the doc thinks t3 and t4 okay and tsh most important one - I am so glad I am on this site

  • Well, the important thing is to go by your symptoms and how you feel. There is actually a lot of individual variation in which values people feel well at.

    Although the more I look into it the more I think the best way to be sure you wouldn't be better off on a higher dose is to keep increasing until you feel clearly hyper symptoms and then drop back. Too many times I've had doctors tell me I'm over, and interpret my symptoms that way. But actually I'm not sure I've ever been over dosed.

  • yes you're right. I do feel quite well at the moment but a bit lacking in energy. I have ordered thyroid S and usually take thiroyd. do you think there is much of a difference and should I start on the same dose as thiroyd.

  • I don't know enough about it to say :( Theoretically I think they're all the same active ingredient, but some people get on better with particular ones so who knows.

  • just an update from above. I reduced my dose by one quarter so am now on 1 3/4 and feel the most normal I have felt in years. I have joined a slimming club and already in five weeks have lost 9 lb. I feel sooo much better - think I have found the right dose at last - it has only taken a year lol

  • Good news Thyroidnodule! I think a year is quite good going, I'm on 4 years and counting!

  • a year is good going but that is only trial and error with thiroyd - before that it was the nightmare levo and then two years before that withnothing at all as docs said I was okay in spite of having my thyroid blasted with RAI - now find it hard to trust doctors

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