Any advice please - disappointing endo consult

I went on Tuesday to an endocrinologist full of hope and positive expectations. What did I come home with? "Take multivitamins". That was it.

She blamed my hypo symptoms on my vegan diet and I didn't have the presence of mind to point out that both my daughters have been vegan longer than I and they are both very slender, fit and strong living very full lives.

How is it that some of us are sometimes so dumbstruck just when we most need to communicate well?

22 Replies

  • I can empathise. I get struck dumb too. In my case I think it is because the absurdity of the nonsense I'm listening to from the doctor makes my brain go into a spin.

  • Love this answer Humanbean, lol!

  • thyr01d Oh yes, I know that feeling well. I am hopeless with doctor appointments regarding thyroid, always think of the right thing to say after I have left, never at the time when it is needed, even though I go prepared.

    One doctor you can't discuss anything with anyway. Apparently I'm overmedicated because my TSH is suppressed although free Ts in range. When I pointed this out to her all she said was she could send me to see Dr S. I ignored her, have dodged tests for the last two years and am doing my own thing but still collect my script for Levo. I've since found out Dr S is a bit of a pig (maybe a lot of a pig).

    Don't bother with the multivitamins, they contain too little of anything to help. If you have any deficiencies it's best to test and find out where they are and supplement accordingly.

    I am having a very anti-doctor day today but I can't really put what I'm thinking, (it's a potty mouth day today and I'd probably get banned :D )

  • Thanks SeasideSusie, good to hear someone else can go along prepared and still not say what they want to - I even had a typed out sheet that I didn't give to the endo!

    I won't take the multivits, I survived, against the odds, cancer and was then asked to take part in a trial which showed that there is a link between taking multivitamins and developing cancer - not proven to be causal but it could well be.

  • Since your endo was that useless, I'm wondering what was in the letter of referral your GP wrote. I'm very suspicious about whether or not he/she sabotaged you before you even got to see the endo. If that was the case there is little you could have done to have improved the appointment. You could phone up and ask the hospital for a copy of the letter. It might be interesting (or depressing).

    I realise I could be doing your GP a disservice here, but I know such sabotage does go on.

    You only have two options now, as far as I can tell :

    1) Ask your GP for a referral to another endo for a second opinion. I think this has little chance of success since you had such a hard time getting the first appointment. But I am not sure what your rights are with regard to getting a second opinion - maybe someone else knows. Before you even broach this subject with your GP though, I suggest doing your homework on which endo you want to see, so you don't just get lumbered with another idiot.

    2) You could self-medicate. I'm sure you know that many people do this.

    I can't think of any other choices, sorry.

  • Thanks Humanbean for thinking about this, I too thought the GP had written along the lines "this patient complains of ... and cannot accept that she is not ill, I'm sorry to refer her to you but ...."

    Frustratingly I did research into endos before going, I can't find any recommended near me so I rang and spoke with their secretaries, who are often excellent.

    I've been on the brink of self-medicating for a while but afraid of taking the step - it's the lack of monitoring that is worrying.

  • How is it that the endo knows you are vegan? My endo has never asked me about what I eat or don't eat. I could be a cannibal for all she knows.

  • Yes, I thought the same, presumably this was 'mentioned' by my GP.

  • I too know that feeling; of thinking of an appropriate and effective response, question or example too late. I have found writing everything down first, as it helps you to consider the to counter the other person's points of view. Try talking it through with a friend who has a good ear. :)

  • Great advice JT15PIT but I'm sorry to say I did have everything written down and I did talk it through first - I still end up stunned into silence.

    For instance one of the first things the endo said was that I have osteopenia which would be worsened by T3 - why on earth didn't I think of replying "but my TSH is suppressed on T4 and that worsens osteopenia so I might be better off without T4 and with the correct dose of T3"

    I think this is part of what throws me though, in May after a bone scan my GP told me the results were fine and I had no osteopenia! So my mind was probably still thinking about that and hadn't caught up with the next thing.

  • I'm not happy with my doctor either... At least u got told to take vitamins... All I got was go home and meditate!!!

  • *Facepalm*

  • What does *Facepalm* mean Humanbean?

  • It's a jokey way of explaining my reaction to Naz67's comment. This link shows what a facepalm is :

  • That's brilliant humanbean, lol! I've been particularly enjoying your posts today.

  • Oh heck Naz67! They have tried "you should exercise" to which I smiled and replied I'm a yoga teacher so they haven't said that again.

  • Lol love it!!!

  • Have you had your B12 levels tested? We need a good level if we have thyroid problems too. Symptoms of being low are very similar to low thyroid, and as you are vegan, you won't be getting much from your food. Your daughters are probably OK as they will still have a store of B12 in their bodies. We use it up more as we age, and don't replace it as efficiently.

  • Thanks MariLiz, I supplement with a good B12, eat fortified foods and have my levels checked and even when not supplementing it's always above mid-range. I do aim now to keep it top of the range since learning from people like you who offer helpful advice on this site.

    I was diagnosed as hypo about 15 - 20 years ago with a retrospective diagnosis going back to my teens, long before I became vegan.

    Don't know if you checked my history but I have ferritin at the bottom of the range (though I have been taking prescribed ferrous fumarate for many months) or under which interferes with T4 to T3 conversion and my T3 is at the bottom of the range with suppressed TSH. Since we don't assimilate well when T3 is low it looks to me as if raising the T3 would help the assimilation, improve the conversion and relieve the symptoms so I expected the endo to explore this not suggest vitamins!

  • Sadly most of the endocrinologists we are sent to see are mostly interested in diabetes, or are trained to only look at the TSH result. Even though the one I saw suggested T3 and wrote twice to my GP they wouldn't prescribe it. Saying it isn't supported by the CCG. I have bought my own, from Greece, and have had two attempts at introducing it gradually. However, after being unwell and developing some nasty skin eruptions I have currently returned to Levo only. I'm waiting for a dermatology appointment at the local hospital, and am on a long term antibiotic to try and control the skin issue. Wishing you well. MariLiz

    Ps I have been treated for underactive thyroid for around fifteen years too.

  • You are unlucky to have an unhelpful surgery and not to feel better on the T3, I do hope the antibiotic helps.

    Presumably you also have not felt better even though on Levo?

    Wishing you well too, at least we keep making progress, however slowly.

  • It just feels like one step forwards and two back! When the endo said he thought I needed T3 I was so pleased. I have the added complication of low B12 too, which causes similar symptoms to underactive thyroid.

    Good luck to you too, hope you feel better soon.

You may also like...