Not Addison's?

I've just come back from my GP and she has given me the results of the ACTH stimulation test I have had done. BUT in the GP's words they are "advisory" only:

Baseline cortisol: 622

30 mins: 915

60 mins: 985

So I guess that means Addison's is excluded.

And I have absolutely no idea what's going to happen next.

Any help would be appreciated.

Thanks!!

Jo xxx

23 Replies

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  • Hi Jo, as much as we want the test to acknowledge we have issues , we feel disappointed when we are told normal , when evidently we are ill. The ACTH test in not a accurate test infact I believe it's useless, unless you are on you last legs. I have used the saliva test ( private) very reliable and will show variations in your cortisol levels over 24 hrs, here you will be able to see how your levels fluctuate, stays the same, low or high. In my opinion the urine and ACTH are useless are cortisol can be influenced from other co factors. Xx

  • Hi Merissa, thanks for your comment.

    Where can this adrenal test be ordered? I'd be interested in going ahead with ordering one if it's affordable enough.

    Jo xxx

  • Hi Jo, go on Thyroid uk main paige, I think it's genova diagnostics. Xx

  • Thanks Merissa!! Jo xxx

  • I've looked through the list of the tests Genova offers in relation to adrenal testing but there are *loads*. I've picked these ones out but I only want to go for one due to my financial situation:

    * Adrenal Stress Profile - detects both cortisol and DHEA.

    * Testosterone Saliva Test - detects testosterone as I have excess hair on face, arms, bikini line and front of body.

    Can anyone advise?

    Cheers

    Jo xxx

  • You want the adrenal stress profile - a saliva test.

    gdx.net/uk/product/27

    And a tip for when you do it - keep a note of the times that you produce your samples, and if/when you repeat the test you can do the samples at the same time - it makes comparisons much easier.

  • Thanks for your reply and the link. :)

    I'll go ahead and order it tomorrow but is the GP/Endo likely to want to know these results or will they dismiss them?

    Jo xxx

  • Doctors are likely to ignore it. They believe people either have Cushing's (high cortisol), Addison's (low cortisol), or they are normal. There are no shades of grey with the medical profession and adrenal health.

    If you want more info, then go to the STTM site map page :

    stopthethyroidmadness.com/s...

    and scroll down until you come to the Adrenal related section. Then read the articles which seem relevant to you.

    The good news is that anything you are likely to need to help your adrenal glands to recover can be bought without a prescription. You just need to know what to buy, and that depends on your saliva test results. Don't bother buying anything until you have your results!

  • Hi, I've looked at the Hashi's link on the STTM site and incidentally it says that I would need to have both anti-TPO and anti-TGAB to have Hashimoto's. But my latest bloods show I only have elevated anti-TPO? So does that mean I don't have any anti-TGAB or did my GP just didn't look for it too?

    Under the adrenal link regarding the basal metabolic chart my BBT is always low and fluctuating.

    So maybe an adrenal saliva test is a good idea.

    Thanks

    Jo xxx

  • Jo,

    I think that Janie (of STTM) has not expressed this very well. As I read it, she is saying that you might need to be tested for both antibodies (TGab and TPOab) because you could be positive on one test but not the other.

    I really don't think she is meaning that you must be positive on both tests.

    Indeed, she then goes on (correctly, in my view) to say:

    There are a very small minority of individuals who will have no reading of antibodies, yet a strong suspicion they have Hashimotos, especially when they have noted swings between feeling hyper, then feeling hypo, or a lowering of their voice, or a thickening in their throat area.

    (Mind, even then, swinging between hyper and hypo can only continue as long as there is enough functioning thyroid so that it is able to produce enough thyroid hormone to make you hyper. Once the thyroid is sufficiently destroyed, it is probably impossible to become hyper.)

    Rod

  • Hi Rod, thanks for your reply. It's helped me a lot. :)

    I have elevated Anti-TPO antibodies at 41,000 (<34) so that does mean I have Hashimoto's?

    Would that explain the mixture of hyper symptoms and hypo symptoms in that case?

    Thanks

    Jo xxx

  • Many doctors would be perfectly willing to diagnose Hashimoto's on the basis of significantly raised TPOab. (Though many UK doctors do not use the name "Hashimoto's" but simply call it auto-immune thyroid disease.) And I agree with that.

    It could most certainly explain hyper/hypo mix-up and swinging between the two. But it doesn't mean that something else isn't also going on.

    Rod

  • Hi Rod,

    My Endo says it's Hashimoto's and my GP says it's auto-immune thyroid disease, hence why I'm confused by being told 2 different things. But I was under the impression that they mean the same thing.

    I don't know what else it could be that I have - Addison's has been ruled out and the Endo was very certain I had that.

    Thanks

    Jo xxx

  • They do mean the same thing in the real world.

    For many years, medics insisted that only those with both "lymphocytic infiltration" of the thyroid AND a goitre have Hashimoto's. As things were looked at closer, they realised that the attack on the thyroid was exactly the same whether or not the person has a goitre. The logic was then to extend the term Hashimoto's to cover pretty much all autoimmune attack of the thyroid.

    The USA seems much more likely to use the term Hashimoto's than the UK.

    So it is really a matter of background and culture than difference of opinion.

    (Note: As I understand, it is the special white blood cells called lymphocytes that do the attacking. The antibodies are effectively markers of this attack. When your thyroid cells are attacked, the contents of those cells spill out into the bloodstream. The immune system then releases antibodies to help clear out the spilled "stuff". Thyroid cells are pretty much the only place that has Thyroglobulin and Thyroid Peroxidase. So if they find antibodies to either of them it strongly suggests that thyroid cells are spilling. Of course, many other antibodies might be also present but they would probably not be specific to the thyroid so do not hekp with diagnosis.)

    Rod

  • Thanks Rod.

    With lymphocytes I have been tested for these in a complete blood test and are within range.

    Because they're within range does that make it less relevant to the actual auto-immune thyroid disease?

    I had a goitre a few years ago but this went down.

    Jo xxx

  • You know, I really don't know if the standard lymphocyte count is affected enough to be noticed. There are lots of lymphocytes and only a small number are set up to attack the thyroid. Perhaps too few to show as "elevated"on a Full Blood Count?

    If anyone does know the answer for sure, please do tell us.

    As thyroid tissue is destroyed the size of the thyroid reduces. Could that be why your goitre reduced?

    Rod

  • Hi Rod, thanks for your reply.

    I guess that could be why the goitre has reduced, but that happened within 4 weeks. That sounds pretty extreme as I thought it'd be more gradual than that.

    Lymphocyte count from last blood test is 1.85 (1.00-4.00) so they were detected.

    Whenever I have my thyroid examined by the GP they can't feel anything abnormal but could it be that they can't feel the thyroid itself? That would make sense if the goitre has since reduced.

    Thanks

    Jo xxx

  • Jo,

    If you do the adrenal stress test (and any other private test) do make the results available to your endo and GP. Sometimes the tests aren't available on the NHS and the results may have a bearing on your condition.

  • Hi Clutter.

    I was told by someone else that they may not accept the adrenal test results. Is it likely my GP would since she has now accepted I have an autoimmune condition?

    Thanks

    Jo xxx

  • While some NHS GPs and endos may refuse to look at private tests it doesn't mean that yours will. If they refuse ask for the results to be included on your NHS records and ask the reason for their refusal to consider tests from accreditated sources.

  • Hi Clutter, thanks. I'll go ahead and order it in that case.

    Jo xxx

  • The GP I saw yesterday referred me to an endo based on my Genova results of TG antibodies over 1000 (0-40). Not sure the dipstick I saw last week would have though! I'm not seeing him again unless he phones to apologise for telling me i'm making it up!

  • Hi Harry!! Thanks for your reply.

    Well done with your results and your GP referring you! Maybe it's a worthwhile thing to do in that case! :)

    Jo xxx

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