TSH 1- Symptoms 0. Patient sent off and Endo relegated. Now what?

Had put all my hopes into the visit to the private Endo. Hopes dashed. TSH, T3 & T4 all normal and full blood count from GP all normal. 15 minutes into the consultion I was given the opinion that the problem lies elsewhere not endo. (be aware tests are nowhere near complete re. antibodies, cortisol, diabetis,etc but good enough to give the above opinion).

So I dismissed the Endo to the bench (mark) took my goitre, my enlarged unresponsive pupil, and almost every symptom ticked on TUK tick list of symptoms and went to find a new team. Meanwhile newer symptoms rush on, slurred speech, difficulty finding the right words, my tongue feels thick and a strong metallic taste in my mouth, the feelings like crawling down the side of my face into the top of my chest which can be warm or cold (not exactly pins and needles, just soft tickling sensation). The worst (best) part is that these symptoms pass so its hard to demonstrate. Visited GP who gave some comfort saying they know something wrong but still waiting to hear from outstanding tests from consultants before muddying the waters (1 autoimmune condition border line and adrenals needed a test from hospital appointment). My pulse is always below 60 and my BR temp has been lower than 36.5 (my shocking memory stops me doing it more often). I am repeatedly told its not my thyroid based on my bloods (both parents hypothyroid). Notwithstanding the outstanding tests, what should I do next? I am reluctant to supplement or self medicate (can you do that anyway??!!!) while investigations are ongoing but every day is torture and I cant understand why none of the professionals will seriously consider my symptoms or my thoughts that my problems stem from my hormones and vitamins. Any thoughts on what to do next to try to help myself get well. :( X

5 Replies

  • The 'professionals' aren't trained to recognise symptoms and know practically nothing about hormones - not even the endos, as weird as that might sound!

    First step, get print outs of all your blood tests - you're intitled to them- and post them here. Then people will be better able to advise.

    Hugs, Grey

  • Thanks Grey. I have already posted my results and got various helpful comments, most suggesting that I did have thyroid and other issues (where not at optimal range) and what to do about it to try and get a diagnosis in the first place.It was these comments that encouraged me to read up and challenge the GP and endo recently. But I havent found any of the professionals agree with me. They all sympathise. It seems the Endo and GP's are not necessarily impressed when I quote from this site or even TUK. I have had other tests in recent days which might throw up something else so I will retrieve them and post them for a fuller picture. Thank you for your response. :)

  • "Metallic taste in the mouth" caught my eye. You might be interested in seeing this:


    Let me know if you need more information about biotoxin illness.

    Jane x

  • If you google Metallic taste in the mouth, you'll see it's quite common and has lots of possible causes. It is a typical symptom of hormone issues (I had this when severely hypo) and can even be an early sign of pregnancy :)

  • Iv'e been there too as has most of us if not all sadly

    I have been sent to the pain clinic numerous times and on the last two occasions been referred back to the GP as the pain clinic said it is depression Grrrrr.

    Had 2 Mri scans, been to the Rheumatology dept , neurologist, physiotherapist, nerve conduction studies.now at psychiatrist :(

    The last psysiotherapist who ironically is part of my Gp practice made quite a few remarks on my medical records which add to my hurt, sadness and disbelief at what they are capable of recording. The phsysio said........ patient expects others to be financially responsible for accupuncture!!!!!!!!!!! what happened was in 2007 I was referred to pysio at the hospital and had some pretty amazing results and relief. This time I almost begged in desperation for accupuncture and he told me the results were not long term and I was not able to have it. As above that is what they are capable of recording.

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