Next steps

Following my letter to the endo, i am being sent for a short synacthen test. Any advice/thoughts about this? Should i stop nutriadrenal beforehand?

Also the NHS result for TG antibodies was 1823 but I don't know the range. I've only ever seen it up to about 35\40. Does anyone know any different until I find out?

The secretary read his reply out to me as I don't have it yet, but basically reiterates that in the UK I won't get treated til my TSH goes up!!

18 Replies

  • I have had a SS test done but wasn't on adrenal supplements so I would say for you to stop them - they obviously alter the adrenal function, which is what you don't want, so I would be inclined to stop them as long as possible before the test - but this is just my opinion and someone else, who has more knowledge about adrenal supplements, may say differently.

    You don't normally have to stop anything for the SS test but adrenal supplements may well be different.

    Moggie x

  • Thanks Moggie. From what i've seen, no one rates this test much anyway, but I suppose I should do as I am told!

  • Hi Harry, you have to stop any steroid medication too.

    I've had this test and all I can say is don't pin too many hopes on it. My Adrenal Stress Profile showed low cortisol, but the synacthen test only seems to measure if your adrenals respond to the injection. No measure really if your cortisol is low to begin with. I'm very nervous in hospitals with very valid reasons, such stress/nerves can skew the test.

  • Thanks. I'm not pinning anything on it, as far as i'm concerned they just don't want to treat me with my TSH and are just going through the motions! Not on any steroids thankfully. I was thinking of doing the saliva test just for completeness. Do I need to be off the same things for that?

  • Hi Harry, I'd be self medicating in your situation. There's so much evidence around that antibodies should be nipped in the bud by thyroid medication. Long shot here, have you had your cholesterol tested? It was one of the reasons I started meds. My previously low cholesterol had shot up to 7.7. I keep saying this, but the way doctors are you have to make a case for yourself to get any kind of treatment. I took to my GP before and after photos, a ticked list of symptoms from thyroid UK, and I just kept going on and on. My TSH was 5, but my FT4 was low at 13, and FT3 3. Something. I had to insist on my FT3 being done and I just got lucky. I emailed my GP and delivered thick large white envelopes with anything relevant I could print from the internet, I took the Toft book in and quoted relevant passages in letters. We shouldn't have to do this, but bottom line doctors including endos are largely ignorant and out of their depth with thyroid issues.

    I now treat myself and doing better. I've also started LDN to try and get my antibodies down. Some people have reported zero antibodies in as little as 3 days.

    I haven't read the other posts so hope i'm not repeating anything!

    Re the Adrenal Stress Profile, I would stop the adrenal supplements, but email the lab, they are very helpful and will give you advice.

  • No, fab reply, thank you! I wrote to the gp & endo, and I work at the hospital myself, so I think they have realised i'm not going to put up and shut up! I got some ndt but I guess I should let them do what they are going to do first. I had never had cholesterol done before but it was 5.2 last week.

    I'll give the saliva test a go too I think. Thanks x

  • No probs Harry. You have to be tough when you feel so ill, it's just plain wrong.

    You cholesterol seems OK. Mine's come down from 7.7 to 5.1!

    I wish you luck! X

  • Thanks!

  • The trouble with the test is that it is too black and white - you either have a certain adrenal condition or you don't - and there is nothing in between. It will not pick up adrenals are struggling - even if the blood tests you have had done suggests this the test will not.

    Have a look at the link as it tells you what they will be doing, what they are looking for result wise and what the results mean.

    When are you having it done?

    Moggie x

  • Yes, just reading it now. Not got a date yet, I only spoke to the sec this morning

  • The appt doesn't normally take to long to come through so I hope someone comes back to you sooner rather than late about your adrenal supplements - if it were me I would stop them a.s.a.p.

    Moggie x

  • My next appt with the endo is 15th so presumably he will want it done in time to review then. I'll stop the nutriadrenal now. Now, what to do with my NDT that's in the cupboard??? Oh this is too complicated :-\

  • You are talking about the 15th of March aren't you - three weeks away?

    If you are then I would leave the NDT as well until after the appt just in case he sends you for more bloods on the day but again NDT is not my strong point so maybe someone else will advise you differently.

    I take it you haven't started it yet so surely another 3 weeks isn't so bad in the grand scheme of things.

    Again - only my opinion but I certainly wouldn't want to be messing up possible blood results for the sake of three weeks.

    Moggie x

  • OK :-( I just really want to be better. I hate this, and patience isn't my strong point! It only arrived on Saturday, so not taken it yet as I was waiting to check my results today and I have an eye appt on wednesday

  • I would hang onto them in case you feel you need them again, especially if you thought they were doing you good. Having been off them since mid-January, although my temperature is only just under (37.7 am), my hair is beginning to suffer again, and skin. Have an appointment with Endo soon, so will try and leave until after this to go back on them again. Also beginning to ache more. Janet.

  • Thanks, hope you get on ok

  • And I have thoroughly read all the adrenal vs thyroid info, and I think my adrenals are actually OK. My symptoms definitely fit more with thyroid or a small mixture, not overtly adrenal.

  • Hi Harry, I had this test done a couple of years ago. I was on Nutri Adrenal and the Endo told me to come off them two days before the test. Having since come of them (only taking one until mid-January this year) I would say it takes longer to get out of your system. Do not really think this test tells an awful lot, only that your Adrenals are working, but not giving information about how they are working over 24 hours. Think the Genova Saliva Test is a better barometer for this. Janet.

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