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Questions about the Adrenal saliva 24 hour test

Discussion in 'Adrenal Dysfunction' started by BRISWHARF, Apr 2, 2017.

  1. BRISWHARF

    BRISWHARF

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    Hello,

    I'm having an Adrenal 24 Hour Saliva test next week and have a couple of questions if anyone can help please.

    I've been mostly bed bound for about 1.5 years thinking I have ME. If the test comes back with abnormal results does this mean this could actually be a good thing? For example there is more of a treatment plan than say someone with ME who has normal results after this test?

    My doctor has said if my results are abnormal they are able to prescribe DHEA, Pregnenolone or low dose Hydrocortisone. How long do you take these for? Is this treatment likely to work well & do all the symptoms return when you stop taking the drugs - or does it actually fix the problem?

    Many thanks :)
     
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  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Having a saliva cortisol test is understandable in your situation, I've had it myself as has practically everyone else on this forum I imagine.

    However....what I think you need to consider is the following.

    1) An endocrinologist would consider a saliva test a bit 'DIY', in that it's the first step to then requiring 'gold standard' tests that only then usually then require medical intervention with drugs. By that I mean it's unlikely you'll find a doctor who will rely on a saliva cortisol test alone, and instead they'll stick to the gold standard test methods. Although expensive, I would go down this route as it's far safer.

    2) If you don't and a doctor will prescribe you drugs like candy, be aware that taking hormones may thus have some undesirable or even seriously dangerous effects. Years ago, it was thought that the hypothalamic dysfunction in 'CFS' could be fixed simply by boosting cortisol. Short term this worked for some, but not long term. My unproven theory, is that by taking hormones you ramp up the infections, as the infections feed off cortisol hence the body lowers it as protective measure. Certainly if you look in medicine generally they don't like you to take hormones if you have an active infection, even something as innocent sounding as taking Thyroxine for low thyroid can help 'wake up' chronic infections. So take that on board a bit, that the idea that if you have ME CFS you can just 'fix' your cortisol issues (if you don't have another illness of course), is rather unlikely.

    Before your doctors all give up, you have to have had these tests in my view to be absolutely sure the diagnosis is correct because as you know ME CFS is all guess work, there's no test. You can have 10,000 private tests, but even then no one 100% knows they have ME CFS. So we need to go back to basics and rule out conditions that can be diagnosed reliably. In this respects in comparison to immunology, endocrinology is child's play.

    24hr Urine Cortisol
    at home and then give into the hospital the next day.
    Short Synacthen Test in Hospital.
    5hr Glucose Tolerance Test in Hospital

    Cost wise, obviously 24hr urine test first (must be 24hr) and then do a Short Synacthen test next. The Glucose one is just to rule out hypoglycemia which can be linked to cortisol failure or other autoimmune issues affecting your brain or adrenal glands. Also take on board that very poor nutrition can screw up your body, and again although expensive, I would make sure you aren't squished in bed as you're running hugely low Vitamin B6/E/D/Zinc etc. Sounds far fetched, but on private testing, many people here with ME CFS, find out they are low in many different things they never dreamed off as they eat well, or even take supplements - but still, levels are low, (or far too high).

    If you're bed ridden your local Hospital should take you to the Hospital by ambulance to have a test in the day unit. You want somewhere as quiet and stress free as possible.(Rather silly statement I know when you feel anxious and awful), but I mean don't do it in an ER or surrounded by people screaming and yelling at each other in an admissions/diagnostic ward. What I do, is I hire a paramedic crew and I befriend them. I do this, psychologically, to try and lower my stress/panic levels. This way, although my tests will still be falsely high, (stress increases cortisol and prolactin) and strong anxiety will increase adrenaline - by having people who are 'friends' with you, your brain can learn to relax a little more than going from a quiet house to a madness of a busy hospital. So I always ask for a medical day unit, which is usually nice and quiet. Better still, go privately and always tell the staff beforehand all of your medical issues. All of these things give you confidence, and help lower cortisol and other stress hormones - what you want! I've had to do this myself as I can't just 'turn up' in out patients and sit upright like everyone else.

    Generally, in ME it is the brain not the adrenal glands that is deficient in producing cortisol (a neurological problem) not the adrenal glands (an organ problem). In this respect I would not be surprised to learn if your diagnosis is correct (you say you've only been ill 1.5 years) that your 24hr tests are low normal, but not low enough for Addison's disease which comes with a whole host of signs and symptoms you haven't mentioned thankfully.

    That's not to say that you couldn't have ME + actual adrenal failure of some sort, or adrenal issues and not ME at all, but that it's more likely that you have a neurological problem if you have ME.

    If this is the case the following is very important as already listed above:

    A Short Synacthen test stimulates the adrenal glands, it does not work on the brain in the same way as other 'stimulation tests' that measure Cortisol. In this respect, to rule out pituitary dysfunction you would need a similar test, in which the pituitary is 'stressed' (e.g. a Glucagon Stimulation test), I've had this, and they measure you pre, post injection of a drug (whilst fasting). I've had it myself, it makes you feel super rough but you're safe and the test is only done with specialist nurses who are aware of any possible intervention. I would not agree to have this done outside of a hospital, or a specialist clinic. Make sure you are extra careful when having tests that are designed to 'provoke' a stress reaction as your mind cannot overcome your body, if your body doesn't work correctly - as we all know.

    If your brain does work correctly and you have another reason for having ME symptoms most likely, your cortisol after the injection will remain 'up', after initially high (from the adrenaline rush of anxiety/panic over the test which is due to your adrenaline, coming from your adrenal glands which is good if it does this!).

    However, in ME which usually involves an element of 'central' hypocortisolemia because your HPA axis is dysfunctional, you will see that your levels of cortisol after the injection do not rise sufficiently, e.g. mine was something like 440, and the minimum it should be is 550. BUT...this is then a diagnostic nightmare, because they can't really do anything for you in this situation as your neurological problem (how your brain reacts to stress, due to hypothalamic dysfunction) cannot be fixed simply by taking tablets. Catch 22. In fact in 'CFS' past studies found giving patients hydrocortisone tablets makes them worse.

    Good luck with your test, but if you have ME, try and be realistic that the results may well be normal, or low normal which means (usually) and endocrinologist will lose interest in you as they are used to people with hardcore adrenal failure, adenoma's that need surgery or even brain tumours, not more 'subtle' neurological problems mostly caused by the immune system and autonomic dysfunction - hence gross endocrine problems are rare in ME.

    Best Option:
    If you THINK you have ME but aren't sure, I would definitely rule out Adult Growth Hormone deficiency first which is rarely done for anyone with ME CFS. IGF-1 blood test is not sufficient to rule this out. You need a full battery of pituitary tests, a pituitary high resolution brain MRI (if the bloods are abnormal) and ideally the Glucagon Stimulation test to measure post stimulation Growth Hormone or similar to 'stress' your pituitary where they can measure Cortisol, Glucose, ACTH and Growth Hormone all at once. Adult Growth Hormone deficiency can mimic lots of symptoms of 'CFS', including shortness of breath, low blood sugar events, anxiety/agorophobia, weight gain, depression, breast growth in males, heart problems, cognitive dysfunction, the list is endless.

    Alternative:
    If you cannot get this test due to cost, or too ill. Try to source a 24hr Urine Growth Hormone test. You must sleep correctly, or the result will be falsely low. In your sleep, your pituitary releases little bursts of growth hormone. So for this test, I dehydrate myself (otherwise I pee all night and if I pee I'm awake and not sleeping, with no sleep I won't produce GH). If this is low, I would repeat the test. Again, make sure it's fair and you aren't laying their wide awake.
    So if the test is legitimate, and low, then you can go back to your doctor and say look - my GH is really low, please can I now have the GH measured in a Hospital based Stimulation test?

    See how that goes and good luck.
     
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I disagree. The 24 hour urine cortisol is only useful for ruling out Cushing's disease/syndrome, a condition of consistently high cortisol throughout the day. Other clinical signs would also be present to indicate Cushing's, such as weight gain and high blood pressure. The test should be ordered and interpreted by an endocrinologist. It is not used to diagnose adrenal insufficiency.

    To diagnose adrenal insufficiency, an 8 a.m. serum cortisol is needed. If this is low, the short synacthen (ACTH stimulation test) can be done on another day. I assume by "short" you mean that the test only goes to 30 minutes. It can also be done for 60 minutes.

    The saliva cortisol test can show if cortisol levels are consistently high throughout the day with no diurnal rhythm, which would indicate Cushing's. A low morning saliva cortisol could indicate adrenal insufficiency.

    It sounds like your doctor knows what he/she is doing. When I had low cortisol based on saliva results, my doctor prescribed hydrocortisone but I wasn't able to tolerate it. This was so long ago I can't remember what adverse response I had to the hydrocortisone. I've never taken pregnenolone. I have a good response to DHEA in that it makes me feel less sick in the morning and seems to give me a bit more energy. A treatment plan using these supplements can sometimes last several months.
     
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  4. BRISWHARF

    BRISWHARF

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    Thank you for getting back to me with your replies. I really appreciate it.

    I'm guessing things are different in other countries but here on the NHS since this my illness started 1.5 years ago they tell me there is nothing they can do to help and to "go away and stop looking for answers". However now going privately I hear about this 24 hour saliva test and that if levels come back abnormal I could try DHEA, Pregnenolone or low does Hydrocortisone which could really help. It's crazy how the NHS doctors have never mentioned this or given me the chance to at least try it!

    I will keep hopeful & thanks again :)
     
  5. ukxmrv

    ukxmrv Senior Member

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    Hi @BRISWHARF

    The reason you are hearing about this private test and the treatments is that your normal health service doesn't accept the results a being meaningful and treatable. It's regarded as an experimental test that doesn't return anything valuable.

    That's because the national health service recognises conventional adrenal disorders like Cushings or Addison's Disease but not a altered adrenal pattern with highs and lows which is what the 24 hour saliva test tends to show.

    The national health services have their own tests such as the short synacthen test. These are usually administered by an Endocrinologist.

    I've had both. Tried all the treatments your private doctor is looking at. Apart from small boosts it's not returned enough benefit to keep buying the drugs. I can't remember noticing any benefit from DHEA, HC and Preg both boost me at higher doses but the effect tends to wear off if I take them continually for a month or so. I have more physical strength, lose weight (for me good), my nails grow and probably other things I have forgotten. Still take them when temporary boosts needed.

    Here's quite a good report from one UK NHS patient of the hurdles she faced for treatment and tests which may be similar to your health service

    http://www.investinme.org/mestory0041.htm
     
    Last edited: Apr 9, 2017
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  6. jess100

    jess100 Senior Member

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    Oddly enough I just came from the doctor who said that she wants this me to do this cortisol test, (and wants to do exactly what the OP's doc said if results are abnormal), AND results of last pee test showed exactly what you said: I'm super low in B1, B2,B3, and B5, despite taking a lot of high quality B vitamins. I was pretty shocked by that since I've been supplementing above and beyond for quite some time.
     
  7. Basilico

    Basilico Florida

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    @BRISWHARF , I think that you should gather as much hard data on what's going on in your body as possible, so if you suspect you've got a cortisol issue, definitely do the 24hr saliva test. Just keep in mind two things:

    1) If the results are not normal, it may not be possible to correct.

    2) Fixing your cortisol level and pattern may not be your cure; it may improve some symptoms, but it may have gotten dysregulated as a reaction to another problem, rather than being the actual cause of your problems. I think there is a big tendency with CFS/ME to confuse correlation with causation. This does not mean that a dysregulated system shouldn't be addressed, it just may not be the root of the problem.

    My husband had the 24hr cortisol test done a few years ago. His results showed that his cortisol pattern was completely reversed; instead of being high in the morning and low at night (what it should be), it was low in the morning and high at night. His doctor tried to help 'switch' it by having him take hydrocortisone in the morning and phosphatidylserine at night, the goal being to sort of guide the body into getting used to operating at cortisol levels that were appropriate and then tapering off once normalization was reached.

    He did this for quite a while, but it never made a difference for him. His cortisol is still screwed up, and it's just something annoying he has to deal with (he's super sleepy/low energy in the morning and afternoon, then 'wakes up' in the evening/night when he should be preparing for bed. This does not mean it won't help you (or others), it's just not a sure bet that it's a fixable thing, if it turns out to be abnormal.
     
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  8. BRISWHARF

    BRISWHARF

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    Thank you for your helpful replies.

    Yes I had realised that's the case with the NHS however just don't really understand that if the 24 hour Saliva test can help people (even just a few) why they don't use it. Or at least told me about it so I had the option to go elsewhere and get it!

    ukmxrv - Thanks for the link with the story - she was diagnoised with inflammation of the pituitary gland. Is this what the 24 hour Saliva test could pick up or is this something totally different?

    Basilico - thanks for your story, that's interesting. I'm hoping there must be some good positive stories about hydrocortisone otherwise I guess it wouldn't be prescribed. I will keep hoping anyway,but realise it might not be the full answer.

    Many Thanks :)
     
  9. Basilico

    Basilico Florida

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    You may already know this, but just in case you don't, I wanted to mention that if you end up using hydrocortisone, be sure not to use it for a long time, and when you are stopping it, be careful to taper down slowly (this is something a doctor should be telling you, but it's been my experience that doctors tend to make egregious and careless mistakes when it comes to basic stuff like this).

    There are many serious problems that can result from taking cortisone long term, which is unfortunate since for many people it's the only thing that helps particular autoimmune issues like asthma.

    The human body is pretty stupid sometimes; if you have hormone levels that are too low, for example, you'd think the perfect solution would be to take some hormone replacements and eventually the body would start functioning better and realize that this is the optimal level and start making those hormones on its own.

    Instead, the opposite happens; the more you supplement with something that increases hormones or neurotransmitters, the more the body stops making them on it's own (in the case of neurotransmitters, the body reduces the number of receptors, which has the same effect). So paradoxically, the more you supplement the less your body makes.

    You mentioned taking Pregnenolone, which as a master hormone precursor could help, and it would be worth discussing this with a doctor. My husband couldn't tolerate it at all (even at lower doses), it made him rage - I suspect it caused his already high testosterone to go too high. I took high doses of it myself, but didn't notice anything good or bad. It's something I might try again, though.

    Whatever route you take, it's good that you are trying to be proactive about your health, which I know can be really frustrating.
     
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  10. BRISWHARF

    BRISWHARF

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    Well I had my results today from my 24 hour Cortisol Adrenal Saliva test. I was expecting low cortisol!

    However instead it came back normal throughout the day apart from the very first morning level which is pretty high (out of range). My mornings are when I feel the most tired and dizzy - not sure how this fits in with high cortisol in the mornings. I thought when it was high you were meant to feel more wide awake not the other way round!

    Seeing my doctor next week, but any ideas how she might suggest treatment for this? I guess trying any hydrocortisone isn't an option now as my cortisol is too high and not too low.

    Many thanks for any help :)
     
  11. Basilico

    Basilico Florida

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    If your cortisol is showing normal throughout the day, I doubt your doctor will suggest any treatment. In fact, it doesn't seem like with this particular issue there is anything to treat. Having the morning value a bit higher than normal is not necessarily a problem, as many things can cause a temporary spike. Since this test is focused on how your overall levels/pattern of cortisol is, it sounds like your results were actually quite good. It's great that you were at least able to rule out something, so I would say this is very good news. Now you can focus on other things.
     
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  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    My most recent salivary cortisol had the same profile. I had a morning serum cortisol level done within a week of the saliva test and it was also high, just like the level in the saliva test. I showed the result to my endocrinologist and she said the elevated cortisol was due to stress.

    Ten years ago I had the salivary cortisol levels done and they came back low across the board. It's strange that I felt the same then as I did with the most recent test. This confirmed to me that it's very hard to tell if you are "low" or "high."
     
  13. charles shepherd

    charles shepherd Senior Member

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    Basic information from the MEA on hypothalamic-pituitary-adrenal axis dynamics, the adrenal gland, adrenal gland (cortisol) testing, and the use of steroids as a possible form of treatment for ME/CFS:

    1 Although there is consistent research evidence to show that part of the underlying disease process in ME/CFS involves what is called the hypothalamic-pituitary-adrenal gland axis, and that this can cause a reduced output of the hormone cortisol from the two adrenal glands (ie hypocortisolaemia) which sit above the kidneys, there is no evidence from clinical trials to indicate that steroids are a safe and effective form of treatment.

    2 Testing the function of the adrenal glands should be done through a GP (in the first instance) by checking the blood level of cortisol at 9am. If this is low, then further testing of adrenal gland function in the form of what is called a synacthen test might be necessary - this test is done in hospital and involves giving a hormone (ACTH) that stimulates the adrenal glands to produce cortisol.

    3 I would not recommend the use of 'do it yourself' tests that are sometimes arranged by alternative health practitioners, including just checking salivary cortisol

    If testing for adrenal insufficiency needs to be done this should always be arranged on the NHS.

    4 Although some minor benefits from the use of low dose steroids have been reported, the current consensus is that the disadvantages (including further suppression of the natural output of cortisol from the adrenal glands) of using steroid treatment in ME/CFS outweighs any possible benefit.

    5 Research into HPA dysfunction and low levels of cortisol is summarised and referenced in the Research section of the MEA purple book:
    http://www.meassociation.org.uk/201...earch-masterwork-now-available-19-april-2017/

    6 Clinical trials involving steroid treatment in ME/CFS are summarised and referenced in the Treatment (Immunological section) of the MEA purple book

    Information from the Investigation section of the MEA purple book (2017 edition) on the assessment of hypocortisolaemia (low cortisol levels) and cases where Addison's disease (severe cortisol deficiency) needs to be excluded:

    Short synacthen (ACTH) test if plasma or urinary cortisol is low with symptoms (i.e. weight loss, nausea, pigmentation of non-sun exposed areas) and if routine screening tests suggest Addison’s disease (i.e. hypotension, low serum sodium, raised potassium).

    The short synacthen test may fail to identify people with ACTH deficiency due to hypothalamic or pituitary disorders.

    The insulin tolerance test remains the gold standard for diagnosing ACTH deficiency, with the other tests in reserve and to be interpreted in the light of clinical context.

    The basal 9am cortisol is also of contributory value.

    Cortisol is secreted in a pulsatile manner and has a diurnal variation (a peak in the morning and a trough at night) so measuring cortisol at random gives a poor indication of adrenal function in most cases.

    Cortisol measured at 9am can be used as a crude indicator.

    A measurement of > 500nmol/l suggests normal adrenal function and a measurement of < 165nmol/l suggests adrenal insufficiency.

    A measurement of < 100nmol/l at 9am is diagnostic of significant deficiency and requires urgent referral.

    [​IMG]


    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
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  14. Tilney

    Tilney

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    Years ago I had a 24-hour synthetic ACTH test.

    The test started on the Monday morning with blood samples being taken over the course of 24 hours.

    I had the last blood sample taken on the Tuesday morning at about 9am & felt absolutely fine, normal, cured back to my pre ME/CFS self.

    I ditched the prearranged idea to get a cab home and felt so good that I decided to go shopping & didn’t get home till about 8pm.

    I was totally convinced there was a cure & my life could resume as prior to becoming ill.

    However, by the Friday morning I was feeling very ill & couldn’t get out of bed.

    My husband took the day off work and phoned my GP who prescribed a short course of tapering prednisolone.

    I went back to see the endocrinologist for the results & explained that I had felt absolutely fine on the Tuesday & very ill by the Friday.

    The endocrinologist explained that my test results were normal & “that some people did feel euphoric after having tests done”.

    This is the only testI have had done that I haveever had this kind of reaction so if you asked me prior to the test how I would have expected to feel afterwards I would have answered unwell.

    @charles shepherd

    Do you know if this is a normal ME/CFS response to an ACTH test?
     
  15. charles shepherd

    charles shepherd Senior Member

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    I obviously know of people with ME/CFS who are going to having this test done and I also receive occasional reports from people with ME/CFS who have had this test done - in most case to exclude the possibility of Addison's disease being present

    It is unusual to receive reports from people with ME/CFS who have had any form of significant adverse reaction to this test and what is basically a short lived boost in their cortisol output

    CS
     
  16. Binkie4

    Binkie4 Senior Member

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    @Tilney @charles shepherd

    In 2008 I had a short synacthen test done at a London hospital. I know this is not the same as the full synacthen test but thought it might have relevance.

    It took a morning and I felt fine but by the time I reached home one to two hours later, I felt incredibly ill. Almost couldn't climb steps at station, hr hugely elevated. Took propranolol that evening on Consultant 's advice. Very ill next day, saw GP. Elevated HR and rash. He reviewed me 3 days later when episode was subsiding.

    Consultant always denied it had anything to do with test.


    I would never have one again.
     
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  17. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Sorry to hear of your experience, you need to report it to your GP and if they refuse, document it and write to the hospital. To be fair, they usually take these things very seriously. It's important they know in case you had a delayed allergic reaction and in the future they gave you this test and you forgot you had this reaction which might provoke a worse reaction next time.

    Did they give you a print out of the result? If you can, get a copy.
    In ME CFS it's usually 'normal' (not low cortisol), but the NHS don't tell you the result can be blunted.
    Blunted is not a normal response of your brain, and shows HPA axis dysfunction. This finding is common in ME CFS, mine was like that too.

    BTW If you still have low cortisol issues or what feel like them, then make sure to have a Pituitary Stimulation in hospital, such as a Glucagon Simulation Test (GST). Instead of Adrenal Glands being provoked, this is more for your brain. E.g. think of it as a low brain cortisol test.

    Mine was actually below the minimum cut off, and yes the NHS still ignored it as then this validates ME as organic.
     
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  18. Binkie4

    Binkie4 Senior Member

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    Thank you @Research 1st

    It's all a while ago now but I won't forget the unpleasant side effects of that test. I did explore them very tnoroughly with GP and Co nsultant.

    I did have a result print out and, while it's hard to remember exactly, you are right that my cortisol level wasn't low.
     
  19. ukxmrv

    ukxmrv Senior Member

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    Tilney,

    I made a very positive response to a short synacten test.

    Every morning (of my normal day) I feel awful, weak, shaking, low BP and it doesn't lift until later that day.

    On the day of short synacten test I was the same, nothing to eat plus a trip to the hospital made it worse

    After the injection for the test I began to feel better. Still nothing to eat but all my normal morning symptoms lifted and I was able to leave the hospital and go shopping.

    Following day I was back to feeling crap again
     
  20. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Then to keep yourself producing GH are you going to have to keep yourself dehydrated at night? This does not strike me as a good solution.

    What if you never sleep well? In that case I don't think I would call it a 'false' low.
     

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