1. I had an ACTH test yesterday as my recent cortisol level was low. I was told my TSH would be tested but not T4 and T3. However when I got there, it was a full thyroid profile being done. I had breakfast in the morning but no caffeine. I had a small bowl of plain porridge and nothing else, except water. The day before I had my T4 (100mcg) in the morning. I took half my T3 (5mg) at the same time. I took 2.5mcg T3 at about 1pm and the other 2.5mcg T3 at 10pm. What will the food do to the result?
2. My T3 prescription has been changed by the ICB from 10mcg tablets to capsules. I have been looking for capsules. I can only find Roma. They contain gelatin in the ingredients. As vegetarian, what are my rights to refuse this and keep the tablets?
3. Does anyone know about adrenal insufficiency (SAI)? I just passed the SST but not by much. The 30 minute result was a fail. The 60 minute result was 454 nmol/l.
Thank you very much!
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AppleOrchard
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eating breakfast has been shown to lower TSH by up to 30% in some people , but had no effect on others. So your TSH may be a bit lower than it would have been if you'd not had any breakfast ,or it may make no difference.
( see the 4th reply to this post for details of that research : healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range)
We don't know , the subjects were asked to take 'mixed diets of about 400Kcal, a comparison group took 75mcg Glucose ( 300Kcal) and both were compared to a control group who were fasted.
AppleOrchard how did the test make you feel? The reason I ask is that I had one of these recently and it completely knocked me out - they actually had to wake me up a number of times during the test. I now wonder if the ACTH exacerbates hypo fatigue. The nurses were quite surprised as they said it normally makes people very buzzy.
Oh wow! I was told it could make me dizzy. And it didn’t at first but it after a bit.
What are your results?
My endo was ready to dismiss me telling me all was fine. I asked if he’d done an acth test (not the stimulation one but the one to measure my level). He hadn’t so he agreed to do it.
I know you can pass the SST and still have SAI. Although I passed, I didn’t pass well and didn’t pass at 30 minutes.
I have lost 5kg and am now down to 50.3kg. I’m 170 cm. I am eating but don’t have the appetite I did have. I making myself eat though. I have lots of other symptoms too.
I really didn’t think I had low cortisol, e.g Addisons - I am just getting fatter, not thinner (despite no appetite)and don’t have any other symptoms. I have put on 30kgs in in about two years. The low cortisol (c100) has been written off as an anomaly as my scores were in the 600s during the tests. The consultant is now investigating my high cortisol scores with even more tests to check I don’t have early stage Cushings. I still have cheekbones and don’t have the characteristic blue stretch marks so I am doubtful if it is this is the case. While the Endo performs every possible test, I am aiming to get my newly diagnosed Hashi’s under control. I am trying the obvious things that do no harm to either my thyroid or APT axis - meditation, deep breathing, gentle exercise etc.. I do wonder if I improve my thyroid health, that my cortisol scores will normalise.
I have read quite a lot of theories about how extended periods of high cortisol can result in low cortisol in the long run - however, it was v difficult to tell whether mainstream Endos would endorse the theories as it seems to quite trendy to talk about adrenal fatigue in Tik Tok videos. I would expect that they take your unexplained weight loss seriously and will investigate. Doctors’ views on weight seem quite aysymmetrical to me - weight gain is frequently dismissed as individual chowing down on cakes, whereas as weight loss is worth investigating in their opinion.
Best of luck and I would be interested to know what they say.
That must be hard - we don’t expect to put on so much weight so quickly. I don’t understand why they don’t investigate rapid weight gain in the same way as they investigate rapid weight loss.
Have they repeated the cortisol test? I think just doing it once when it’s been very low like that isn’t great.
I guess the weight gain could be thyroid related but I thought the weight gain was more gradual.
Exercise and meditation sounds a great thing to do anyway. Perhaps yoga too. I’m trying to find a yoga class for my daughter - I should probably do it too.
I think that a lot of endos aren’t really up on AI or the HPA axis in general. You have to do your own research.
Adrenal fatigue does seem to be all the rage. Dare I say it, I think your adrenals either work or they don’t. There’s no fatigue involved.
My weight has gone down by about 5kg and I’m now at 50.3kg. It’s just going down and down.
Hi AppleOrchard, have you had the actual ACTH test to see if your pituitary is producing enough of a stimulus, or are you now awaiting that tests because it wasn't done with the stim test? The cut-off levels are very difficult to get you head round ie. 420 is a pass but 419 is a fail... I read in some testing facilities (may not be UK, can't remember) they don't bother with the 60 minute level and also read somewhere that if you only pass at the 60 minute mark is shows a sluggishness that should be taken notice of and other tests should be done to follow up.
I've been doing lots of research on this subject for myself recently. What I also read about was in SAI the adrenals atrophy over time due to the reduced production of ACTH from the pituitary. So, in theory the stim test would produce a fail like in PAI. This is probably why they don't routinely measure ACTH directly (even though they should) until they actually get a fail and then need to work out whether primary or secondary. But, if the lack of ACTH has been short term or is only a partial reduction/suppression (pituitary ACTH secretion is a bit low rather than absent) then the adrenal glands may be only partially atrophied and so are able to mount some sort of response when they get the enormous amount of Synacthen given in the usual full dose test. I then went on to read that the low dose test (of Synacthen) is believed, by some, to be more accurate in diagnosing SAI as it provides a more physiologic dose rather than a supraphysiologic one as it doesn't 'force' the adrenals to mount a response that would never happen in normal stress type of responses of those with SAI. But, this seems to be a test that's not frequently done as the low dose is super expensive for each vial and diluting the high dose down has problems with inaccuracies.
Just what I've been reading and not suggesting I have got my facts completely straight here, do your own research to be sure! Of course over time more clinical trials are done and practices change. Ultimately, not one of these tests has 100% accuracy and some will fall through the net. Happy to send some links to what I've been reading if you'd like.
Have you had the actual ACTH test to see if your pituitary is producing enough of a stimulus, or are you now awaiting that tests because it wasn't done with the stim test?
It wasn’t done with the original test. I’m now waiting for the result. I had various other tests done too. I hope I get the results soon.
The cut-off levels are very difficult to get you head round ie. 420 is a pass but 419 is a fail...
I completely agree. It’s a bit like the thyroid test. Suddenly from one number to the next you might have it or not. I don’t understand why the endos won’t investigate. Maybe they really don’t understand it.
I read in some testing facilities (may not be UK, can't remember) they don't bother with the 60 minute level and also read somewhere that if you only pass at the 60 minute mark is shows a sluggishness that should be taken notice of and other tests should be done to follow up.
A lot of UK facilities don’t do the 60 minute test - Southampton and Birmingham QE to name two. There’s research to suggest that a lot of AI is misdiagnosed if you only do the 30 minute test. However, I think if you fail at 30 minutes, that says something that should be followed up. Most people will pass the test with flying colours! There are people who get around 600. If you fail at any point, there should be follow up tests automatically. My endo told me all was good and that I could be dismissed. The ACTH was only done at my request and that was because I have done research. There will be loads of people who don’t research.
I think it’s possible I have had this for at least a year. I had a 9am cortisol test done in Feb 23. I can’t remember why. The result was 280nmol/L. Nothing was said and there was no follow up. I was on HRT and a steroid inhaler. My result that prompted the SST was 269nmol/L. That was in Feb this year. It was done whilst on HRT and the steroid inhaler. The doctor didn’t mention that both could affect the result. Again it was me researching and coming off the HRT myself. I have been steadily losing weight since longer than that. I used to be 56/57kg. The weight is coming off faster now though. And I have been suffering headaches and cramps for a long time too.
From my research there are other, far more accurate, tests for SAI. An example is the Insulin Tolerance Test. I will request that next. Although I think I’m going to ask for another endo. But perhaps that’ll slow things down.
I’d love the links. Thank you! I can send the ones I have too.
Thank you again. My phone is about to run out of charge so I’ll recharge and reply to the others later. My phone is so old!
Sounds like you are very well researched on this matter! Glad you've been able to get the ACTH test, without it a piece of the puzzle is potentially missed.
I read about the Insulin Intolerance test, does not sound like a very nice test to endure! I can feel when my blood sugar has dropped and I do not feel good. To be made very hypoglycaemic quickly, on purpose, absolutely no fun at all 🥴
Were you on oral HRT? I was trying to work out if it was only oral rather than transdermal oestrogen that could cause a problem with accurate results. Seemed transdermal didn't raise cortisol binding globulin...
Do you have any hyperpigmentation?
There’s research to suggest that a lot of AI is misdiagnosed if you only do the 30 minute test. Interesting - you certainly don't want to end up on hydrocortisone if you don't need it, the long-term consequences are not good.
If you fail at any point, there should be follow up tests automatically. That would make sense to me too but looks like you need bully tactics to ensure this happens.
Please do share your links, the more info the better, here are mine 😊
'Does anyone know about adrenal insufficiency (SAI)? I just passed the SST but not by much. The 30 minute result was a fail. The 60 minute result was 454 nmol/l.'
It means your adrenal glands have shown capability of responding correctly to the ACTH stimulation but they are slow to respond. This might be because long term hormone insufficiencies have altered an HPA axis signalling baseline but optimising essential co-factors will give best opportunity for the condition to reverse itself, eg levels and response to eventually normalise.
Or the results could indicate towards adrenal atrophy, an ACTH deficiency (pituitary), or even CRH (hypothalamus). Further tests would be required in determining this.
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