Seen the endo - will not give me any Levo :-(

Well, after months of waiting saw the Endo yesterday and although he was a lovely man he said in his opinion I do not need Levo.....

I have all the symptoms of Hypo, and as some of you have already probably read, I took Levo in November til Feb this year and felt so much better... Then GP took me off it again (feb) as wasn't convinced im hypo and I began to feel crummy again. Admittadly, not as bad as originally and im wondering if the Levo "kick-started" my Thyroid?

He was very thorough to be fair, he examined me, asked lots of Q's then I had to have some bloods and injections to test if my Adrenals and Pituitary Gland is ok. Pretty sure it will be and then that is it.. no more help...

He said that a study had shown people with tiredness who think they are Hypo, and bloods not showing you are (like mine) eventually get better and that Is that!! Mmmmmm. I tried to explain it's not like a normal tiredness.

If my tiredness carries on as bad as it was originally I think I will be going down the self-medication route..

He said its dangerous to take Levo when you don't need it, can cause osteoporosis and heart probs etc......

Bit disappointed to be honest....

Any thoughts?

He also said when we were discussing my results that T4 is the important one in underactive and t3 is irrelevant, only important in over-active ...??

I have many hypo symptoms and a strong family history of it too. (when I mentioned my eyebrows going then growing back on the levo.. he never took any notice?!!)

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16 Replies

  • Hi, I could have wrote that post last July so totally know how you must feel!!! I have since gone back on Levo and gradually increased up to 200. However I still don't feel well. I now have to reduce back as my tsh is too low and t4 at the top end and nothing hyper about me. No idea on my t3 as my gp won't test for it, but have raised antibodies. I'm not sure Levo is the answer for me, or what is!!! I am too afraid to self medicate so now trying to find another Dr from thyroid UK's list, which will hopefully get me better. Good luck with yours.

  • ta, good luck as well x

  • Hi Joanne

    Damn this is frustrating! :(

    Please can you let me know if he was on our list and I can take him off...! :(

    Could you afford to see one of the Private GPs...? xx



  • I'm sorry it was so disappointing xx

  • Sympathise - I was hypo for 6 years despite blood tests showing 'within normal range' Eventually got carpel tunnel syndrome at which point thank goodness the doc. put me on thyroxin anyway. Have been on it now for 15 years, generally OK but I do have dips and have tried talking to the local endo about Reverse T3 which he doesn't really want to go into and says the current tests are OK which of course we all disagree with. It's a scandal - if you can try other specialists then go for it. Otherwise go back to you GP who does have the power to put you on Thyroxin even though the specialist took you off. Good Luck!

  • Hi, it was the gp who took me off of Levo then agreed to send me to an Endo! niehter of them think I need it... I am just gonna see how I feel for a while then will prob go private!

  • That sounds like your best bet: back to your local doc. And be firm. Take someone with you if you possibly can. Make a short list of reasons why you need thyroxine and another of how you were better when you were taking it.

    Is this Endo actually a thyroid specialist or ENT? Or diabetes?

    It's a bally joke - they hold this 'osteoporosis' thing over us whatever state our thyroids are in, and whatever it is we want in the way of medication in order to help us feel well. It's beginning to have the same sort of generic nuisance value in my book as 'it's a virus' and 'you've got arthritis' ie it means nothing, except that the 'expert' has no reason for what they've just said.

    Good luck!

  • I have told he GP all that and I told the Endo (he is a Thyroid specialist!!OMG) the same thing, showed him a list of symptoms etc and told him I was much better on levo - went on about it being a placebo !! great.

  • They don't even bother with consistency in their 'off the top of my head' waffle-speak do they? If it's a placebo how can it possibly contribute to osteoporosis? Honestly!! Words fail me, Joanne. You must be beside yourself with frustration. With a side of fury.

  • I think he meant it was Levo but that it was a placebo affect as in the fact that it didn't help me feel better - it was pysychological!! lol it is very frustrating...

  • Hi

    probably not much help to you, however I have been self medicating for quite a few years now. Having looked at these forums and all the 'still sick' people on them, it felt for me that going down the NHS route of misery was not for me. I don't take Thyroxin. I take Naturethroid which is a combination of porcine T4 & T3. My GP is aware of this and actually agrees with it it cos she knows that Thyroxin is not always the answer, and knows I don't like synthetic drugs, but she cannot prescribe Naturethroid.

    She provides what she can like some blood tests so she can keep an eye. She is far from irritated that I take responsibility myself, and for my thyroid and adrenal health. My GP when I asked if they did Saliva Adrenal tests, said "sadly no, we don't test adrenals and we are failing very many sick people"..................she looked very sad when she said this.

    There is masses of info, books natural thyroid forums out there. There are Naturopaths that understand more about thyroids than most Endos sadly. All of this is available if one can take the leap to taking ones health back into ones own hands. It is not as scary as it may sound. There are private tests a plenty to track how one is doing.

    This route I know is not the majority choice - but in the end for me it came down to choice. Stay sick or try and find a way to get better..........

    best of luck


  • thanks, it may come to that! x

  • The fact that this endo claims T3 is not relevant for hypo says it all really. As far as I'm concerned, any 'expert' who comes out with this is really not worth the petrol money/bus/train fare to visit. You have some good support and suggestions about a way forward in the answers here - I'll just say how sorry I am at this outcome and I wish you the best in your journey to find well-being. xxx

  • Thanks, I am puzzled as to why he said it!? he said it was only relevant for HYPER?! x

  • I have had normal blood results , convinced I'm hypo and very tired for 30 years. Did this lovely Dr say how long it would take for me to spontaniously get better. Now paying to see a doctor with some sense

  • do you mean for me to get better? he didn't said the thyroxine I took b4 that made me feel better was probably a placebo effect! ha. then just said in a study it showed people with tiredness gradually get better....... mmmm

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