Changing from a well known specialist to a more supportive one

I'm so sorry this is a long message but I'm really upset at the moment.

I went to see my GP today and she told me that my thyroid specialist (who is very well known on here) has written to her in words that more or less say I am not hypothyroid. I was gobsmacked at this and felt so foolish when she told me as if somehow I am a hypochondriac. I have had this thyroid specialist for seven months now (after ten years of being told my blood tests are normal despite being symptomatic)and he has always said I am definitely hypothyroid. I managed to get a copy of the latest letter he has written to my GP and I can understand why my GP is doubting I have an under active thyroid in view of what he has put.

It took me ages to get my GP on board and accept I had an underactive thyroid as she is one of the few GP's who accepts his opinion it would seem. Now I am back to square one and completely alone again.

He has also stated in his letter that I did not report any adverse effects on T4 to him when I actually reported a long list of them to him. He has also told my GP that I had asked to be put on NDT which is true because of all the adverse effects I was having on T4 but his letter looks now as if he was just going along with what I wanted.

I am so angry and have left a message for him to call me. I just need another prescription for NDT and then I have decided to find another thyroid specialist instead. I am forced to pay privately. Has anyone else ever changed their specialist from a well known one? It's bad enough trying to find a supportive GP without having to find a new specialist as well. I thought I was in safe hands but now I will have to find another specialist instead as I have lost all confidence in him.

Incidentally my GP also said she knows very little about being hypothyroid and as far as she is concerned you can only get myxoedema on your legs and arms!! (I have gone up five dress sizes and most of my myxoedema is around the central part of my body and on my face and neck. ) She spent a good part of the consultation comparing my legs with photos of legs with myxoedema on the internet !! God help us!! (or God help me!)

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6 Replies

  • So sorry to hear you have had such a bad experience with your doctor - do you think he, or his admin staff, could have got you and someone else muddled up? It can happen at NHS level so why not him.

    Moggie x

  • Hopefully he will respond quickly and, as Moggie suggests, maybe it's a genuine mistake .

    Did you/can you get a copy of the first letter from him to your GP to compare what was said and his diagnosis should be on it.

    If we are not doing well on levo, it is not uncommon to request a trial of an alternative, be it T3 or NDT when you go private.

  • Hi,

    Thanks for your responses. I wish he had got me mixed up with someone else but the letter is clearly referring to me. His first letter he wrote to my GP says I have all the hallmarks of being hypothyroid (which I do) and he has repeatedly told me that it is so obvious I have thyroid problems that he can't understand why my GP can't see it.

    I think he has distanced himself for legal reasons because I still have the crackling in my lungs which I get when I lie down at night. I put it down to Myxoedema which I have asked questions about on here before. I thought it odd when I saw him in June and I told him T4 was making me worse (I was on 200mcg Levo by then) and I wanted to try NDT instead. He has always said he is happy to try whatever the patient wants so I asked to try NDT. He happily gave me a prescription for it and asked me to let him know how I get on with it. Otherwise he said he may get a general practitioner to look at me. It is as if he doesn't want to help me anymore and has sent a second letter to my GP which doubts I am hypothyroid when he doesn't even know yet how I am getting on with the NDT. It is as if he doesn't want to help me anymore yet I know he helps others whose conditions are far far worse than mine. In fact my condition isn't bad at all. With me it's more to do with my excessive weight gain and getting easily tired when I walk which I know is nothing compared to the problems others have on here. He even told me that others seek his help when they are at death's door! It is all very strange.

  • I agree - it does sound strange. I always think it is best to discuss issues so that both are in the picture. If someone doesn't want to treat you they should tell the person involved. It comes as a big disappointment when iinformation comes second-hand.

    It will be interesting to know the outcome.

  • I would ask him when you speak to him if he has maybe mixed you up with someone else because it does sound very odd if he hasn't even followed up on the trial of NDT, especially if he's previously said you are definitely hypothyroid. Whether the crackling in your lungs is related or not that doesn't change the fact that you are hypothyroid.

  • Who knows the rationale these guys work through in deciding attitudes to stuff K. The one that seems to scare quite a few is the professional exposure/risk of being accused by colleagues with an axe to grind of prescribing thyroid hormone in absence of an accepted blood test that says it's needed.

    Even if the patient's symptoms pretty clearly suggest that it may be.

    15 years of very hard earned personal experience suggests that assurances of 'normal' TSH and T4 and a related refusal to treat hypothyroidism are no defence against serious and worsening thyroid and related illness. The stock tests seem really only to come out negative if the problem is a fairly severe version of primary hypothyroidism - that's where the thyroid isn't producing hormone.

    Which isn't much help if the problem as is very common is downstream - that we're either not converting, or not properly able to use hormone. Meaning that we need T3 and/or as well possibly lots of other stuff sorting out (if possible) like adrenal function/cortisol levels, nutritional issues, deficiencies, auto immune problems etc etc.

    There is no guaranteed single/magic bullet test for these (low plasma levels of T3 can be an indication), and most GPs and endos seem highly resistant to engaging in the much more holistic and symptom led manner that seems to work for these.

    Personal experience again suggests that high profile practitioners are not necessarily the ones to go to - because in our societies the reputation of doctors isn't always all that much to do with the medical outcomes they deliver. It's often better i think to try to find a genuinely motivated, evidence led, low profile and rather more caring type that's prepared to put time and work in, and to work with you.

    By all means have your say, but once it's reasonably clear that there's an alternative agenda it's often better to move on to another doctor - as sttempts at persuasion tend not to deliver results, and can consume a lot of time and money.

    It's a hard road, but it's all part of the fun (ha! :) )exercise of learning to take responsibility for ourselves.

    The old Zen maxim comes to mind. 'Zen mind = beginners mind'. The beginner's mind is wide open and consequently may get some sort of handle on the inevitably multi-dimensioned and finely nuanced nature of reality, but the 'expert' has often pre-judged the situation before even engaging and is thus open to very little...

    Keep on trucking. Don't get angry, don't get down. It just is what it is....


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