Hi all. Gp is listening

I have been to see my GP this morning. I took the Adrenal stress test results from Genova.

She did seem to be more attentive than the last time I saw her. My tests show normal Cortisol at breakfast time but it declined thereafter. (Posted previously in my questions) She said if they test adrenals at the surgery, they only do one test first thing in the morning. So I am really glad I paid privately to do it.

It was decided to send me to see a Dr mark Roberts at Kidderminster hospital. He specialises in CFS/FMS. She said he would look at my health as a whole body thing and not just my Thyroid. She asked me not to take any extra meds that I had been buying on the internet! I said I was happy to do that as long as someone was investigating my symptoms properly.

So tomorrow I will start to drop my NDT to a lower dose, I take 3 grains now. My Endo only recommended 1.5 grains. It will be about sixteen weeks before I get my appointment through. I hope this is worth it.

10 Replies

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  • I hope it will be worth it too. You may strike lucky and see someone who is compassionate and will be able to make you feel well.

    Hope you are o.k. on 1 1/2 NDT.

  • If, cfs/ fms is a result of having too much unconverted T4, in the system, you might start to feel a bit better taking less t4? only a thought.

    G

  • keep us posted an dyour endo gives you ndt?

  • This bloke is not an Endo, he is a specialist in Infectious disease with interest in CFS/ME

  • Hi Pettals

    No my Endo said my GP could PX NDT but she refused saying PCT wouldn't fund it. This was after he had tried Levo and T3 combination, and at my request. So I have been buying off the Internet, and self medicating. I have tried higher doses of NDT but my symptoms just got worse.

    The only combination I haven't tried is NDT+T3. For now I will go along with my GPs suggestions and see what happens. x

  • If your Cortisol really is low, then more thyroid hormone isn't necessarily going to help, and may well make you feel much worse! T3 (on it's own or that in NDT) is very "demanding" on cortisol.

    My symptoms were pretty severe, but even with low morning cortisol (blood), my Endo considered that of no significance whatsoever as it wasn't Addison's. The standard UK approach to low adrenal output, adrenal insufficiency, "tired adrenals" or whatever euphemism that gets used to describe it.

    I have never spoken to ANYONE yet who has "in range" but low cortisol that has been treated by a UK Doctor (NHS or Private) who hasn't been hounded by the GMC, or is still practising.

    Many have had low Cortisol like me, none less, some more or higher and some have also had ACTH tests too, still no treatment for it as they don't believe it is a condition that can possibly exist.

    Maybe you will be different.

    I self treat with Hydrocortisone.

    Incidentally, when (like you) I did drop my NDT dosage significantly, I did temporarily have thyroid swelling, and also the lymph node under my jaw at one side enlarged; presumably this was my own thyroid kicked in trying to produce more once TSH output increased, this didn't last very long though, but was a bit uncomfortable for a few days, making lifting my head up rather uncomfortable.

  • hello picton-- your hydrocortision, how low was your cortisol to do that? an dwould it stop your own adreanls from working, i have often wondered whether to take the plunge, can you pm me an dtell me where youget it from , thanks pettals.

  • I was at 182 nmol/L Range (150-720) at the time (back in 2009), and I was really suffering too! (Flight or fight response was lasting for hours on end, and Hypoglycaemia/Hypoglycaemia-like episodes day and night)

    I subsequently found that under 200 (or even 250) most Endos run further testing suc as ACTH (Short Synacthen testing, to be sure it's not really Addison's, mine couldn't be bothered! Not that they treat it at that level anyway, so it's a matter of following protocols they use in places where they do, such as in the USA :-(

    It's not for the feint-hearted though, and if you are not really low, don't do it you need to do a lot of research and testing (bloods and Salivary), Glucocorticoids are not for playing around with. The info is out there, but to be honest if someone isn't up to the technical side of researching it,, then I wouldn't do it.

  • yes i had that adrenaline, /i read tthat we produce more adrenalin to compensate for low cortiosol, and i had that flight fight respnse for months hypoglycemic symptons heart racing it is awful... mine was 217nmol but it was too low for me.... 2 years on and still the trembling is there altho much much lesss..

  • Thank you all for your interest.

    We learn something from someone else every day!

    Betty x

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