I'm seeing my doctor tomorrow and want to be refered to an endo......how do I convince him to refer me?

Ok, so the longer story is that I've been on levo since October last year and am seeing a big difference, however, I am still ill....my last TSH test was 1.64 (can't remember the range but top end was 4-5......I am currently on 50 mcg's levo...the only reason I am on this is because I have shown evidence (thanks to posts on here) to my doctor that having antibodies will never solve itself so I need to be medicated (I have Hashimotos)...I had to show him all the evidence and I had to convince him this was the way to go after having my results done in another country and showing that the antibodies were completely out of control...(1198 range >100)....so, now I'm getting to the stage where I want someone to tell me what I need to do and an endo would be helpful...however, my doctor has said in the past "we'll look after it, you don't need an endo"....any ideas on what I can give him to show that an endo is, not only part of my rights, but someone I need to see?

17 Replies

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  • You need to have more than a TSH test done. You are entitled to a second opinion but it is worth doing your research otherwise you could end up waiting to see an endo that's not wholly sympathetic.

  • When I first started I had FT4, FT3, TSH, Iron, Folic Acid and B12 (off the top of my head...may have had a couple of other things in there but can't remember at the mo...have the print outs at home but that was back in November)....but they haven't re-tested since...am actually thinking of asking them to redo the FT4 and FT3 to see if my body needs T3 as well as Levo....whether they'll do it or not is anyone's guess but worth a try right?...have emailed for a list of NHS Endo's but worse comes to worse will have to go private I guess?....this is soooo frustrating!!! :)

  • You could always start by thanking him for all he has done for you and then add - But with a TSH of 1.64 and continuing symptoms, which are making your life hell, I think it might be time for a fresh view of my blood result and symptoms - if nothing else it might make your GP up your levo.

    I'm not sure if there is anything concrete that you could show him that could force him into a referral as your TSH may need to be higher than it is.

    Moggie x

  • ooo, I lke your style!!...will definately try that!!!....just one question, when you say higher TSH do you mean lower (in terms of number)? I keep seeing this and am getting the idea that higher TSH is a lower number but am not sure? :) (I've gone from 4.6 to 1.64)...thanks for your help :)

  • I think that Moggie is saying:

    If your TSH were HIGHER (i.e. obviously hypothyroid), then getting a referral would be easier to achieve.

    But, because it is very much in the lower end of most ranges, it does not seem to provide an impetus for your GP to decide to do a referral.

    However, the very fact that it seems to be acceptable, but you are not well, might be an argument.

  • Oh yeah that makes sense!sorry,one of the guys at work confused me the other day saying that a higher TSH was good so thought I was missing something!!....I think thats why he hasn't refered me...because I've never had a TSH value out of range....unfortunately, I've had years of torture because noone even tested for thyroid antibodies or a goitre...both of which I have got!...am too ill to function properly but my blood results are too "healthy" for them to do anything...well,if you dismiss the antibodies...grrrrr

  • I find that treating your GP gently, wherever possible, works better than going in and demanding, although this does not mean that you should sit there and take what he/she says at face value.

    I have had some really "interesting" discussions with both my GP and endo and have managed to get over to them that, yes I appreciate their help and input, but I have my own views and need to know the why's and wherefores of my conditions - expecially the WHY'S. I ask them to explain everything and if I dont agree with what they are saying then I tell them so, politely but firmly.

    Moggie x

  • louise.warvill@thyroiduk.org has a list of sympathetic private doctors/nhs endos if you email her there may be one near you.

  • fab!..thank you :) ...have just emailed her....fingers crossed I can get one on the NHS, if not, may have to consider going private....eeeak!!! :)

  • Let us know how you get on today wont you.

    Moggie x

  • I chickened out of asking for a referal to an endo.....maybe next time.....on the upside, I got an increase in my levo (doing a 75/50 split)....he's always said that he wants to keep me at the top end of the scale (I thought this meant in the 4.something region) but he said today that he won't let me go any lower than the top end of 0.1 so am actually happy...however, he did say that it sounded like I was stressed out and that that can cause some of the symptoms I'm experiencing...not my thyroid.....well...I have another blood test scheduled for 6 weeks time and by then I'll hopefully have found the name of a sympathetic Endo that I can ask to be referred to....oh....and with regards to the blood test....I said I'd like my T3 and T4 to be tested so that I can see if I have a problem with my conversion.....he's doing it AND he's checking for diabetes as I keep loosing energy to the point where I feel like I'm going to fall asleep at work (all of a sudden) and the only thing that helps is dark chocolate and tea....so all in all a successful docs trip me thinks :) ..thanks again :)

  • Well done you and it sounds like he is definately clued up on thyroid issues, possible more than the average endo (most seem to specialise in diabetes and thyroid problems fall by the wayside).

    Lets hope the slight increase in levo will help. Have you had your B12 and VitD tested as these can cause the sudden falling asleep you are talking about. Also being low in iron can cause awful tiredness. At the moment I am on high powered VitD and iron tablets as my endo wanted to get to the bottom of my continuing symptoms. The iron suppliments have helped a lot and now the VitD is kicking in I feel loads better. Please dont misunderstand me, I'm not telling you to suppliment these just to get them tested if you haven't already done so. To suppliment these without GP's guidance could lead to further troubles.

    Congrats again for handling the situation so well and have a happy easter.

    Moggie x

  • Thanks Moggie :) .....well...I did mention the Vit D test and the B12....he doesn't think it's to do with suppliments (have had the B12 injections a few months ago so I agree that it's not likely to be this but the Vit D was only tested once,..2 years ago when I recieved supliments and never go retested once they finiished....not sure if he put to test for this as well, as was a bit too excited about the fact that he's going to let me keep going with thyroxin until I get to 0.1 if need be (he actually looked impressed when I said about the T3 to T4 conversion :) ....eeeeak!!!...am really happy!!!...this site has helped soooo much!!!)...happy chocolate filled Easter to you too! :)

  • No chocolate for me over easter as I am on a wheat, gluten and almost sugar free diet. I am one of the rare people on here that think that absorbtion problems and getting the best out of your thyroid meds has a lot to do with your stomach being able to digest them properly.

    Must admit that since being wheat free I am doing well and feel that I'm giving my meds the best possible chance.

    Have a good weekend

    Moggie x

  • NOOOOOOOOOOOOOOOOOOOOOOOOOOOooooooooooooooooooooooooooooooooo!!!!!!!!!!....think that would kill me!!! .... I use dark chocolate to help suppliment my vit D....naturally speaking so I don't overdose....1 piece a day...i actually look forward to it...I don't get much pleasure out of food anymore as lost my sense of smell and most of my sense of taste when this all started (severe sinus issues which are still ongoing due to constant allergic reactions)...the texture of chocolate melting in my mouth is one of the most comforting feelings I get from food nowadays....well....hope you treat yourself to something nice anyhow :) ....hope you enjoy the long weekend too!! :) x

  • always remember ,as in the previous answers, always be polite but firm, try suggesting to your gp that 'although he/she doesn't specialise in your problem/s ' a referral to a specialist may not only help you ,but also help other patients within the practice -----and also help your gp in the future.......everyone can learn......somebody once said 'A FOOL LEARNS BY THEIR OWN MISTAKES but A CLEVER MAN LEARNS FROM OTHER PEOPLES MISTAKES '----very profound but please understand the phrase........remember polite but FIRM....lol

  • lol!...love it!!...will note it down for next time....may have to rephrase so as not to offend ;) (my appointment was at 9 this morning :)

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