Adrenal Galdulars ... off the shelf? ... experi... - Thyroid UK

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Adrenal Galdulars ... off the shelf? ... experiance

joey82 profile image
15 Replies

Hi,

I received my cortisol saliva test back last week and the results where not in the healthy range at any one point over the day with a 5 point test.

I have been thinking about adrenal gladulars, are they avaialble off the shelf or do they have to be prescribed?

Does anyone have any experience using them?

I am am seeing a new practitioner next week so I will probably wait until then before taking any action...

Kr,

Joe

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joey82 profile image
joey82
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helvella profile image
helvellaAdministrator

Adrenal glandulars are not available at all on prescription.

Prescribers can (potentially) offer hydrocortisone, dexamethasone, etc.

Hence warnings about suppliers, and not assuming products are equivalent, whether they are made from whole or partial adrenal glands, etc.

joey82 profile image
joey82 in reply tohelvella

Thank you. I goggled Adrenal Gladulars this morning and there are products available off the shelf. How do these differ from hydrocortisone & detailsethasone? Are the glandular treatments off the shelf effective?

helvella profile image
helvellaAdministrator in reply tojoey82

The adrenal glands are complex and produce numerous hormones.

The Wiki article is a reasonable summary:

en.wikipedia.org/wiki/Adren...

The two medicines act as individual hormones.

I've never taken an adrenal glandular. And the question needs to be answered by those with much more experience. However, be extremely careful. If the products do actually contain adrenal hormones, they can have very potent effects.

joey82 profile image
joey82 in reply tohelvella

Thank you Helvella, I need to re-read PR's recovering with T3 chapter on the Adrenals again. I am just about to finish Dr Myhill's book and then I will re-read that chapter.

JumpJiving profile image
JumpJiving

joey82 See a qualified doctor. If you have either adrenal insufficiency, Cushing’s, or another problem affecting your cortisol production, you would be better with regulated medications than some over-the-counter tablet that doesn’t even state what hormones it contains, let alone quantities, or even what else there might be traces of (unexpected steroids, antibiotics etc)

joey82 profile image
joey82

Thank you Jump Jiving. I don't have cushings as I've has a synacthen test and all good. I've got adrenal fatigue issues and I'm just doing some research into what products are available to me.

JumpJiving profile image
JumpJiving in reply tojoey82

joey82 What were the results of the SST? Did you have an ACTH blood test done prior to the SST starting? If so, what was the result of that? In the majority of cases, both are required to interpret the result

joey82 profile image
joey82

Does SST mean synacthen test....?

0 mins cortisol: 164.3 nmol/L

30 mins: 471.5 nmol/L

60 min: 556.6 nmol/L

I've never had ACTH tested to my knowledge. The test was overseen by an endo.

JumpJiving profile image
JumpJiving in reply tojoey82

joey82 What time was the baseline (0 minute) blood drawn? If not 8-9am have you had an early morning cortisol blood test done?

joey82 profile image
joey82 in reply toJumpJiving

It doesn't state it on the test unfortunately, I do remember it had to be done before 10 am though. I've had blood cortisol tested at home via finger-prick test a couple of times;

12th August 0905hrs: 305.0 nmol/L

7th October 0735hrs: 274.0 nmol/L

JumpJiving profile image
JumpJiving in reply tojoey82

joey82

If considered to be within the 08:00-09:00 timeframe that is normally used (the 09:05 one is close enough IMHO), NICE guidelines say:

For the 09:05 - "Recognise that adrenal insufficiency is very unlikely."

For the 07:35 - "Recognise that the probability of adrenal insufficiency is uncertain. Consider repeating the serum cortisol test. If it remains at this level, seek endocrinology advice or referral."

Even your baseline for the SST falls into the same range as the 07:35 level if it is treated as being in the 08:00 - 09:00 timeframe (we don't know how close it was).

Your cortisol response to the SST is pretty good. Not the biggest response, but certainly not bad.

Do you use steroid-based medications at all (asthma inhalers, nasal sprays, tablets, topical creams etc)?

Do you have symptoms suggesting a cortisol problem?

Unfortunately, without an ACTH blood test result (which should ideally have been done just before the first blood draw of the SST), with times of blood draws outside the normal range, and without knowing about steroid use and other medical history, interpretation of results is going to be a bit fuzzy. What did your endo say? I am guessing no further action, other than possibly repeating an early morning cortisol blood test at a later date? What sort of practitioner is your next visit with? If your new practitioner does the ACTH blood test and ideally repeats the early morning cortisol within the 08:00 - 09:00 time period (or repeats the SST with the baseline in that time period), do post the results here. For useful results, do avoid steroid use before the tests if safe to do so. In the meantime, please do NOT start taking over-the-counter adrenal supplements of any form.

joey82 profile image
joey82 in reply toJumpJiving

Does a cortisol saliva test not count for anything? My last test around 3 weeks ago showed all 5 results under range. I was always under the impression the cortisol test had to be used in conjunction with the blood test to draw an accurate conclusion of the adrenal function.

I still remain hypothyroid after returning to combination therapy last summer. I have not responded well to combo therapy and have been looking for answers, so my natural course of action was to look at my adrenal function. In PR's book I do fulfil a number symptoms or low cortisol;

fatigue & tiredness, aches & pains, clumsiness (minor), poor response to hormone replacement, anxiety, low & fluctuating body temp. When I wake in the morning I lie their almost paralysed with now energy, it takes me 15-20 mins to get up. But by midday I am ready to hit the gym. I normally feel better in the evenings and the gym can really make me feel better for the rest of the day.

Endo said adrenals are working fine. No steroid based meds what so ever. I was taking ashwagandha x 2 daily but I ran out today and don't intend replacing it as I felt it done nothing.

I don't intend to take another synacthen test as it cost me around £400 pounds on top of an already expensive medical bill this year.

I do realise there could be other options as to why I am not feeling well but from all of my test results adrenal function was the area to test for me and it does show low cortisol. So it's only natural I would want to action this.

PR believes my 8am - 9am blood cortisol should be 400 - 500 nmol/L for a healthy result. I can do another blood cortisol test as it's cheap and easy enough to do, but everyone one I've ever had in the last 2 1/2 years was low (albeit in range).

My new Dr practices integrated medicine (not an endo). I have pre-asked the question as to if he understands and appreciates adrenal disfunction and he does. I will find out more next Wednesday. He is from the TUK list of practitioners so hopefully he can help me resolve me problems.

Ok noted, I won't touch over the counter adrenal meds until I am instructed to by a professional.

JumpJiving profile image
JumpJiving in reply tojoey82

 joey82

Acceptance of cortisol saliva tests for low cortisol problems is still not widespread in the UK. One major hospital in the UK (Sheffield if I remember correctly) does use saliva, and I read a report recently suggesting that it is expected to gain more acceptance, but currently most endo's will not pay any attention to saliva-based cortisol tests for low cortisol issues.

For those of us being treated for adrenal insufficiency, the primary medications (typically hydrocortisone or prednisolone in the UK) are reported to have both a plasma half-life and a biological half-life, with the two being different. The plasma half-life relates to how long the medication remains in the blood, the biological half-life relates to how long it has a biological effect on the body. Cortisol blood tests (including day curves) measure the level in the blood. It may be (I don't know, but just pondering) that saliva-based tests give a better impression of the biological effect, but I have never seen that reported and am purely pondering - I really don't know one way or the other (and I suspect it may be some years before further studies come up with a reliable answer).

There are a range of tests done to diagnose low cortisol issues. The main ones are:

(a) Early morning (8-9AM for most people) cortisol blood test. It takes an on-the-ball endo to know that people with severe insomnia or jetlag, or who are shift workers, may need these tests done at a different time. It is the early morning cortisol blood test that identifies adrenal insufficiency, but not what type and not the cause

(b) ACTH blood test in combination with SST. NHS endo's often skip the ACTH presumably to save time (it takes 2-3 weeks to get the result, and the sample has to be put on ice and sent to the lab immediately) and money, but without it there is an element of guesswork involved in interpreting the SST. The ACTH + SST suggests whether the adrenal insufficiency identified in (a) is primary or non-primary

(c) If (a)+(b) suggests primary adrenal insufficiency, then aldosterone, renin, adrenal antibodies etc. might be tested

(d) If (a)+(b) suggests non-primary adrenal insufficiency, then the pituitary might be scanned (but small pituitary tumours may still be missed), and further tests done in order to identify whether it is secondary or tertiary adrenal insufficiency. At least one of these tests comes with some risk

A further test done once on treatment is what is called a day curve, which is used to identify whether the dosing and dosing schedule are effective.

Other than the gym making you feel better for the rest of the day (most, but not all, people with adrenal insufficiency suffer from muscle aches and slow recovery times after doing more exercise than usual), the symptoms you listed are all typical of adrenal insufficiency. However, there are other things that can cause such general symptoms as well - it is one reason that adrenal insufficiency is so often overlooked by doctors and people misdiagnosed with chronic fatigue etc for years before adrenal insufficiency is identified.

Were you taking ashwagandha (or liquorice) at the time of blood and saliva tests? It's another thing to avoid when cortisol testing.

Yes, an early morning cortisol level of 400-500nmol/L is considered better, but anything over 300nmol/L is normally considered ok.

When diagnosed, my early morning cortisol level was 39nmol/L. Thankfully, mine seems to have been caused by an asthma inhaler which I have now stopped using. I am tapering the hydrocortisone that I am prescribed for adrenal insufficiency and my last early morning cortisol blood test came back at 300nmol/L exactly. I still suffer from fatigue etc at that level. Personally, I am going to continue tapering slowly in the hope that it reaches 450nmol/L, at which point I will either stop hydrocortisone or taper much more quickly. 450nmol/L is my personal target, because I know that before developing adrenal insufficiency that is the ballpark that my cortisol was in (thankfully I had blood panels done routinely that included cortisol). So, I agree that 400-500nmol/L is likely to be better than 300nmol/L, but NICE reckon that anything over 300nmol/L is unlikely to be adrenal insufficiency and many healthy people have levels in that ballpark.

One thing to note with the HPA axis (hypothalamus, pituitary, adrenals) is that there is a feedback cycle. There are many reasons that I believe that over-the-counter supplements containing adrenal hormones are a really bad idea, but one is that if the amount of cortisol entering the bloodstream as a result of taking supplements reaches the physiological daily equivalent (remember that these supplements don't tell you how much hormone they contain) the HPA axis will be suppressed as the body thinks it does not need to generate more cortisol as some has magically appeared. Suppress the HPA axis for long enough and the adrenals will atrophy. Stop supplementing suddenly and, even before atrophy, the HPA axis will not recover quickly enough to replace the missing cortisol and the user may go into potentially fatal adrenal crisis. Even on lower quantities, messing with the body's cortisol level even slightly can make the user feel worse rather than better, and with a short-half life multiple doses per day may be required to avoid feeling really rough when an earlier dose leaves the system. If your new practitioner suggests supplementing with adrenal cortex etc. (very unlikely for a registered doctor) be very wary - if nothing else, ask the practitioner for evidence of what is in the supplement and evidence of the quantities of whatever it is being regular from one batch to the next.

joey82 profile image
joey82 in reply toJumpJiving

Thank you Jump Jiving for the detailed reply, some of which I have read from other sources. But it has raised more questions than answers. I am even considering now if any of the adrenal tests I've had are worth the paper they are written on, and maybe I need to investigate further for adrenal auto-immune attack etc. I was taking ashwagandha at the time of the tests as I was not advised otherwise and neither did I realise.

It's also made me realise there is no easy answer for low cortisol/adrenal fatigue. Once again I have come on the forum and it has left me utterly dejected instead of coming away with some hope and optimism.

Hopefully the new Dr I am seeing next week will be the start of something, but the last 2 and 1/2 years has bough nothing but disappointment.

Dr Myhill suggests in her book Ashwagandha, Ginseng, Bovine adrenal glandular, Pregnenolone, DHEA, & cortisone cream. It also states there is no risk of adrenal function in moderation. "to prop up and support whilst adrenal glands recover.

PR and another has suggested CT3M along with LDN and/or adrenal glandular.

What ever they suggest for treatment next week, I will be sure to proceed with caution until I can be sure it is the right thing to do.

Cheers.

helvella profile image
helvellaAdministrator in reply tojoey82

SST = Short Synacthen Test

Synacthen = Synthetic ACTH - used to perform an SST.

SST is a test to see whether you can respond to ACTH. Hence, restoration of ACTH production would likely result in improved cortisol production. Or not.

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