Is the SST worth having in my case?

[Bertiepuss]

Question - Is it worth me bothering with the SST considering the below info?

I am thinking maybe not but as you have all been so helpful in the past I thought I'd ask for opinions please. Preface - All my core vitamins are optimal and have been for many months now. I don’t take thyroid meds, no antibodies from 4 tests over the last year, and a thyroid scan that was perfectly normal. Results over the last year have been a TSH between 1.75-2.84 (0.27-4.2)….. fT4 30—47% through range…. fT3 16-30% through range. The gland itself seems fine.

I have just been seen by an endocrinologist regarding possible adrenal insufficiency. I was referred by my GP due to a ‘grey’ area morning cortisol of 314 (150-560) and very low blood pressure overnight. I have other symptoms but these were the ones of concern to him. In preparation for the endo appointment, I had a raft of endocrine blood tests – I have listed the thyroid ones below but won’t bore you with the rest which were all normal and not near top or bottom of the range.

My morning cortisol was 304 (102-535) on the recent test so very similar to the one last April. He said anything above 320 would be considered perfectly normal and would not warrant any further investigation and that results over 240 is a very strong indicator you will pass the SST test so felt my result was indicative of functioning adrenal glands that don’t show signs of primary AI. Plus, he said considering all the other pituitary function tests being in the ‘normal’ range it would be highly unlikely there was any pituitary disfunction either. However, if I wanted the SST he was happy to arrange it to put my mind at ease. He did agree my blood pressure overnight is very low (said could be normal for me) but as my potassium and sodium were both mid-range he didn’t feel this was an endocrine or adrenal issue.

I said I would like to have the SST just to be sure but I’m wondering if it’s really worth it considering nothing else was out of range or even close to the ends of ranges? Any ideas?

These were the recent thyroid results (optimal testing conditions observed). He said perfectly normal and that they will vary a little due to them being released in pulses and also from month to month.

TSH - 1.69 (0.35-4.94)…....fT4 - 12.2 (9-19.1) 32% through range......fT3 - 4.4 (2.4-6) 56% through range

I have recently been diagnosed with a rare inner ear condition which does explain a good portion of my symptoms but not all and some are overlapping.

Maybe it’s time to put the possibility of endocrine disfunction to bed?

FYI: I asked about measuring ACTH. He said they don’t routinely do it as it releases in pulses so you can catch it at a low or high point giving a false result. He also said that in secondary AI you would still fail an SST because over time, the lack of ACTH stimulation of the adrenals would cause them to atrophy enough to fail the SST. Only in a recent onset of pituitary disfunction might you pass the SST because the adrenals have not had enough time to atrophy.

[humanbean]

This link is worth reading on pages 68 - 70.

imperialendo.co.uk/Bible202...

Quote :

CONTRAINDICATIONS

Definitely not required for assessment of hypoadrenalism if random cortisol >450 nmol/L.

If a random cortisol >300 nmol/L, patients are very likely to pass the test, and some feel that in this circumstance, the test is not usually warranted

If the test has been offered and it isn't too inconvenient for you, I would suggest going for it. At least it will give you a baseline that might be helpful in the future.

If your level of 304 was got from a 9am test then it suggests that your cortisol would be lower than that for the rest of the day. Tests are done at 9am in an attempt to find out your maximum cortisol. I have wondered how accurate that is for people who do shift work or who have severe insomnia or regularly get up "late" every day (whatever your definition of late is).

[Bertiepuss in reply to humanbean]

Thanks humanbean. Yes, the cortisol test was done at 9.10am. I agree timings should be adjusted to take into account other circadian rhythm patterns. I pretty much wake between 6-7am although I don't get up (drag myself out of bed) until 8am so a 9am test is probably the right timing for me.

Interestingly that particular test was done under some stress. The traffic to the hospital was terrible, so to avoid being late I had to jump out of the car (don't worry my hubbie was driving, I didn't perform any kind of stunt woman manoeuvre 😁) and walk briskly up the hill for 10 minutes - I avoid brisk walking where possible as it does me no good. I then got lost and couldn't find phlebotomy - more stress. When I eventually did, my legs were hurting, heart pounding and I was out of breath and sweaty especially as I hadn't eaten anything either...yet my cortisol was not raised. I guess I will do the SST. Thank you again for your reply 👍

[greygoose]

TSH - 1.69 (0.35-4.94)…....fT4 - 12.2 (9-19.1) 32% through range......fT3 - 4.4 (2.4-6) 56% through range

Well, call me a fuss-pot, but I don't see those results as perfectly normal.

'Normal' (euthyroid) results would be FT4 around 50% through the range, with FT3 just slightly lower. Your FT4 is rather low, and your FT3 is much higher, which is often a sign of a failing thyroid.

What's more, your TSH doesn't really correspond to your thyroid hormone levels. With that low FT4, one would expect it to be higher. But, what time of day was the blood draw?

When the TSH is lower than expected, given the Free levels, that is often indicative of a pituitary problem. And if your pituitary is not producing enough TSH to stimulate the thyroid, then it's also possible that it's not producing enough ATCH to stimulate the adrenals. Problem is that, although they are supposed to test the ATCH when doing an SST, they often don't, and don't really seem to understand the results of the SST or what they're supposed to be looking for. Talking about 'passing' or 'failing' and SST depends on from what angle you're looking at it. If the adrenals 'pass', then it means the pituitary has 'failed', and vice versa. But those doing the test just seem perfectly happy when the adrenals 'pass' and don't seem to think about the other aspect. So, the question is: if the adrenals pass or fail, what are they proposing to do about it? And there never seems to be an answer to that question.

[Bertiepuss in reply to greygoose]

Hi greygoose, thanks for your reply. The blood draw was at 9.10am. The thyroid results this time are a bit unusual for me - the last 4 have always been with fT4 a bit higher than fT3 but both on the lower end of range at times. As I don't have raised antibodies and an ultrasound revealed no atrophy, I assume the gland itself is ok. As to a pituitary issue, the endo did not think anything was amiss and said that as the hormones are produced in pulses, you can catch them at a high point or a low point within your own personal 'normal' range. The fact that the the fT4 was not out of range gave him satisfaction there was not a pituitary problem. Maybe 'my normal range' just has a set-point on the lower side? Ultimately what really matters is how much of the hormones are being used at the cell level and we can't measure that can we?

The SST was explained to me as follows - if cortisol doesn't rise as expected they will then take the ACTH level to see if it's primary or secondary AI. In secondary AI they also expect the adrenals to not produce enough cortisol (despite artificial stimulation) due to atrophy from the lack of ACTH stimulation over time so therefore the cortisol would still not rise. I suppose this saves them taking the ACTH sample (I think it requires special processing) until AI is confirmed. Of course, if the pituitary has only just started to fail in it's ACTH production then the adrenal glands will not have yet atrophied enough to prevent an artificially stimulated rise in cortisol. I think that make sense?

[JumpJiving in reply to Bertiepuss]

Bertiepuss Ideally, they would do the ACTH test prior to starting the SST. But like so many things, many places organise things to be more efficient for them, rather than to make life easy for patients.

Strictly speaking, there are primary, secondary and tertiary forms of AI, although many people (including doctors) lump tertiary in under the secondary banner. That's a bad habit, as the chances of reversing adrenal insufficiency are greater for those with a HPA axis suppressed by steroid-use (including asthma inhalers, tablets, creams, etc). Steroid-induced adrenal insufficiency is tertiary. It's not wise to try reversing adrenal insufficiency if it's not realistic, as that would likely lead to adrenal crisis, so knowing that it is tertiary is important.

The ACTH test and SST together give a good indication as to whether it's primary or non-primary adrenal insufficiency. If it's non-primary, other tests (such as CRH, although there are others), pituitary scan, and medical history can be used to distinguish between secondary and tertiary. Even if the ACTH test and SST suggest it's primary, there are further tests (such as renin and aldosterone) that can be used, along with medical history, to strengthen the diagnosis.

[greygoose in reply to Bertiepuss]

As to a pituitary issue, the endo did not think anything was amiss and said that as the hormones are produced in pulses, you can catch them at a high point or a low point within your own personal 'normal' range.

If that were the case, there would be no point in ever doing blood tests. That sounds like a bit of a fob-off to me. The fact remains that after years of reading other people's blood test results, one would expect the TSH to be higher with those levels of thyroid hormones. And your endo can squiffle on as much as he likes about pulses, but these results are not 'normal' and they are not fine.

The fact that the the fT4 was not out of range gave him satisfaction there was not a pituitary problem

The FT4 is NOT YET out of range. Give it time. The fact that the thyroid has reduced its output of T4 in order to make more T3 is a warning sign, not a cause for satisfaction.

Maybe 'my normal range' just has a set-point on the lower side?

Not that low!

Ultimately what really matters is how much of the hormones are being used at the cell level and we can't measure that can we?

What matters is having enough thyroid hormone to get into the cells. Even if you absorb perfectly at a cellular level you thyroid still has to produce the correct amount of hormone. And it can't do that without the correct amount of TSH to stimulate it. And you've just not got that. I have the impression your endo is just winging it, but doesn't really understand how it all works.

[Bertiepuss in reply to greygoose]

Thanks greygoose I understand what you're saying. Well I guess they don't have time and money to deal with the cases that are not screaming at them with an out of range result. I will do the SST but if my cortisol rises enough I will be automatically discharged. So then what? I'm really not sure of my next step. I've been a year now testing my thyroid hormones, got all my vitamins at optimal levels and not much has changed. I'm a bit less breathless getting up the stairs now I'm not iron deficient. The thyroid hormones hover on the low side but never terribly low. What happens next?

[greygoose in reply to Bertiepuss]

I really don't think it's so much a question of time, as ignorance. They just don't really know what they're doing. So, yes, if your cortisol rises enough they will discharge you thinking their job is done because they just don't understand the implications of that, or that they should actually be prescribing youu HydroCortisone. Well, depending on just low your cortisol is, of course. These things really are quite simple, if you know what you're doing. It's no big mystery. But they just don't know enough. If the problem is your pituitary, as it very much looks like it is, there's nothing to be done except replace the missing hormones. It's nothing to do with vitamin levels, optimising those will not replace the missing hormones nor make the pituitary function any better, I'm afraid.

[Bertiepuss in reply to greygoose]

Yes, I understand what you're saying. But how does one navigate replacing hormones on one's own? I'm pre-empting the likelihood that the SST will stimulate a high enough rise and I will be discharged. Not expecting you to take over being my doctor😁 but do you know what trusted resources might steer one in the right direction?

[greygoose in reply to Bertiepuss]

As I see it, you couldn't do worse than the majority of doctors! But you do have to know what you're doing. It is possible to buy your own hormones - various types of hormones - but you have to tread carefully and do your homework first. I self-treat for my thyroid, but I don't have the added complication of adrenal problems. And I was lucky in that I had a doctor that prepared me for self-treating. So, read as much as you can, starting with the posts and replies on this forum, and all the links given by people like SlowDragon - there's a wealth of information there. And if you have any questions, don't hesitate to ask. There will always be someone to reply - that's the advantage of a hive mind vs the individual, forcibly imperfect, single mind of one doctor.

[Bertiepuss in reply to greygoose]

Thank you for your help. I will see where I get to with this SST and then potentially travel the route of self-treatment if I have to. I'm very glad to have the support of others on the forum 😊

[greygoose in reply to Bertiepuss]

You're welcome.

[JumpJiving]

 Bertiepuss If it's being offered, do it. If you have an adrenal problem, it's best to get a diagnosis and medication. Even if you don't have an adrenal problem, it's better to know that than to keep wondering about it.

Remember that HRT or oral contraceptives may need to be stopped 6 weeks in advance of the SST. Check with the endo if this applies to you

[Bertiepuss in reply to JumpJiving]

Hi JumpJiving, thanks for your reply. I had just wondered if I was 1. wasting resources considering the endo felt base cortisol above 240 almost always will rise enough with the SST to exclude AI.

2. having a test that may make me feel unwell. How did you find the test made you feel? Any effects during or after? What was your base cortisol at the start, much lower than 300?

I'm on transdermal HRT which I believe is ok. I think it's only oral oestrogen that's a problem?

[JumpJiving in reply to Bertiepuss]

Bertiepuss

Re. transdermal HRT, I suggest either checking with the endocrinology specialist nurse, or asking in the Facebook group at facebook.com/groups/1759489...

A small number of people do react badly to the SST (most likely due to excipients in the injection, but just occasionally due to ACTH sensitivity), some people just get a bit tired etc and take the rest of the day off, but most people are absolutely fine with it. I certainly had no ill effects whatsoever. My cortisol level was recorded at 39nmol/L prior to the SST. Off the top of my head, I cannot recall what the baseline level (the 0 minute blood draw) was when I had the SST done.

As for wasting resources - given how hard it is to get endo's to do tests that are blatantly required (as well as my own experience, I see stories multiple times per week where endo's are not following guidelines, let alone being thorough), I figure the chances of an NHS endo offering a test that had no value is very slim indeed. Personally, I would take the test.

[Bertiepuss in reply to JumpJiving]

Thank you JumpJiving, helpful info indeed. Wow, 39 is so very low! With that sort of level I'm surprised they bothered with the SST, it was clear you had AI. I will do the test, as you say, I cna then tick it off my list as 'everything has been tried'.

[JumpJiving in reply to Bertiepuss]

Bertiepuss As per my other reply above, the SST is not to confirm AI (the early morning cortisol test does that), the SST (together with ACTH) is to try to identify whether it's primary vs non-primary. A bugbear of mine is the way that people often refer to the results of the SST as a pass or a fail, which often gets misinterpreted (including by doctors) as being a yes/no as to whether somebody has AI, instead of being whether it's primary vs non-primary (it's already a yes to AI because of the early morning cortisol test).

[Bertiepuss in reply to JumpJiving]

Surely in my case, with a cortisol of 300ish it's not really low enough for AI then? I though the SST was to see if the adrenals are already maxed out at this level and have no more to give? The endo clearly said they don't test ACTH at the same time as they are trying to first determine if the adrenals can respond to stimulation or not ad that they will not be able to regardless of primary or secondary. In secondary they will have atrophied enough through lack of ACTH to stop a cortisol rise despite artificial ACTH stimulation. He was pretty sure in my case there's not a pituitary problem because none of the other tests were out of range like IGF1 or prolactin.

[JumpJiving in reply to Bertiepuss]

Bertiepuss I just checked on another forum (behind a paywall unfortunately). Although people there have been told different things by different doctors, the majority seem to say that transdermal HRT patches do inflate cortisol levels, potentially quite significantly. Assuming those reports are correct (I cannot vouch for it personally), your current level of 300ish may be inflated by the transdermal HRT, so were you to stop the HRT for 6 weeks prior to an early morning cortisol test or prior to the SST, your level may be in clearer AI territory. It may be because of this (or something else in your history) that your endo is so willing to do the SST, when most wouldn't consider it above 300nmol/L.

Regarding the ACTH test, in combination with the SST, there are effectively 4 different (non-inconclusive) combinations of outcome. All 4 provide useful information, even if not a complete diagnosis without further work being done. In one of those cases, the test results are more useful if the ACTH was drawn immediately prior to the SST, rather than calling the patient back for another appointment potentially weeks later.

[Bertiepuss in reply to JumpJiving]

Thanks so much JumpJiving for checking that out for me, really kind of you to go to so much effort! 6 weeks without HRT sounds like it could be potential torture😖 It's so annoying there is not a consensus on whether HRT affects the cortisol level or not. Why do doctors not know this for sure.

I have to say the endo I saw was a pleasant man, without an ego, and was not dismissive of me. I felt he genuinely wanted to be helpful. He did agree my blood pressure was very low and that it was strange, but that all the tests didn't say endocrine dysfunction to him. I think he offered the SST to be absolutely sure as I fell just below the 320 'magic' number. Ah, just remembered, he also said he'd test my fasting glucose as I get symptoms of low blood sugar if I'm not careful with eating. Maybe that sparked something too.

The thing is, I'm not completely debilitated by my symptoms, I can function but its below par. That doesn't really say AI surely? I can understand with a very low cortisol (like yours) that clearly says one has a problem and I would imagine one would be feeling really, really ill. Do some people with AI not become so ill?

Would you be able to elaborate more on the 4 combinations of outcomes you talked about please? Then I will know what to look out for.

[JumpJiving in reply to Bertiepuss]

Bertiepuss Given that the HRT patch may be elevating your cortisol level above what it may otherwise be, you may have AI, or you may not. It may be that the HRT elevating the cortisol level is masking the symptoms that you would otherwise have. But that's a lot of "may"s - the only way to know is to do the test. You don't have to, but the endo has offered it. If you're concerned about stopping HRT for 6 weeks, double-check with the endo about the patch.

In terms of "what to look out for" - unless you had symptoms such as hyperpigmentation of the skin, anything that you noticed would not reliably tell you whether you have primary/non-primary, adrenal, pituitary or hypothalamus problems. Whilst high or low blood pressures, salt cravings, visual disturbances, etc are suggestive of a particular diagnosis, none of them are definitive. That's what the tests are for. If you do the test, you'll get an answer (which may still be that you are fine).

[Bertiepuss in reply to JumpJiving]

Thank you, makes sense. I will do the test. Thanks again for your input, it's greatly appreciated 🙏