How long did it take for your ACTH to come back? - PMRGCAuk

PMRGCAuk

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How long did it take for your ACTH to come back?

Saffron2022 profile image
14 Replies

Hi everyone,

Hope your all safe and well. So i am currently taking 15mg of hydrocortisone a day. I was diagnosed with secondary adrenal insufficiency after i had adrenal crisis last year. It has been about 14months now and a recent synactican test shows my cortisol level at 0mins at 70 and only rises to 200 after injection. My endo says she doesnt know if cortisol/acth will come back.

She said all the other tests were fine and she just isnt sure why it is not responding and its difficult to tell 🤷‍♀️

She said she will now be transfering me to longer term endo term which was not very reassuring and said she will give me an injection kit soon.

Strange thing is that, the most recent synactican test results were much lower then the one i took in January this year.

I have only been taking magnesium at night to help me sleep. Not sure if by taking magnesium supplements affects acth cortisol?. Im really hoping the cortisols/ACTH levels come back one day, i got my next test next year. But i just wanted to know if any of you lovely people here have ever had you acth come back? And if im expecting it to come back too soon? Mine is a pipituary issue btw.

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Saffron2022 profile image
Saffron2022
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14 Replies
HeronNS profile image
HeronNS

Saffron, I've just looked at your profile, and I don't see you have ever told us why you are on hydrocortisone. Did you have PMR (polymyalgia rheumatica) or similar disease which required you to take prednisone for a fairly long time? This could have suppressed your adrenal function because corticosteroids like prednisone supply cortisol so that the adrenals don't have to make it any more. This is the reason people in this community sometimes discuss prednisone, or prednisolone, and the difficulty in tapering at very low doses even when all the symptoms of PMR have gone away. It can take a long time for the function to come back and sometimes, although this is relatively rare, it does not, and those cases hydrocortisone, or a very low dose of pred, must be taken daily. I think hydrocortisone is often preferred when a steroid is no longer needed for pain management, but only to replace the missing cortisol.

Is there some other reason why your adrenal function is low and you have to take hydrocortisone?

As far as I know normal nutritional supplements, like vitamins and minerals, should neither stimulate nor suppress your adrenal gland's ability to make cortisol so I wouldn't worry about the magnesium.

PMRpro profile image
PMRproAmbassador in reply toHeronNS

She sort of told us in her first post. Secondary adrenal insufficiency - her doctor thinks due to supplements. But she never went into more detail.

However, she did PM me - I hope she won;t mind me sharing the info:

"I had an adrenal crisis last year and was told that i had low levels of cortisols and that my Acth levels were far too low. The Endo said that she believes it was because i was taking herbal supplements such as ashwagandha and apparently that has natural steroids that can suppress acth if taken for a long period of time. Im currently on 10 mg and 5mg hydrocortisone taken in the evenings. Its strange cause i started taking herbal supplements cause the fatigue was unbearable and i couldnt function but bloods aways came back normal. I been on hydrocortisone for about 14 months now."

SnazzyD profile image
SnazzyD

Hello, it’s difficult to say but it would help if you answered the questions in the reply to your previous post and HeronNS’s reply this time round and then we can put our heads together.

PMRpro profile image
PMRproAmbassador in reply toSnazzyD

She sort of told us in her first post. Secondary adrenal insufficiency - her doctor thinks due to supplements. But she never went into more detail.

However, she did PM me - I hope she won;t mind me sharing the info:

"I had an adrenal crisis last year and was told that i had low levels of cortisols and that my Acth levels were far too low. The Endo said that she believes it was because i was taking herbal supplements such as ashwagandha and apparently that has natural steroids that can suppress acth if taken for a long period of time. Im currently on 10 mg and 5mg hydrocortisone taken in the evenings. Its strange cause i started taking herbal supplements cause the fatigue was unbearable and i couldnt function but bloods aways came back normal. I been on hydrocortisone for about 14 months now."

Saffron2022 profile image
Saffron2022 in reply toPMRpro

no i dont mind thanks PMRpro

PMRpro profile image
PMRproAmbassador

This

ncbi.nlm.nih.gov/pmc/articl...

suggests that taking magnesium should/would increase ACTH and cortisol if it did anything,

I doubt whether anyone here has had their ACTH checked during tapering of pred, Very few of us never get off pred because of non-return of adrenal function. There are only a very few who have had to stay on pred.

I don't think I would worry about being transferred to long term endo care - the one you have obviously doesn't know where the problem lies or now realises this is a pituitary problem and isn't due to the supplement after all. Which I have to say I thought was unlikely.

Saffron2022 profile image
Saffron2022

hi thank you for all the information. On my searches online i also came across the website PMRpro was referring too but i also found another website -healthunlocked.com/redirect.... This site states that magnesium reduces ACTH indirectly. The last couple days i am no longer taking magnesium supplements and it is been hard to sleep. Im sure ill get used to it.

I dont have PMR. I have secondary adrenal insufficiency for taking a supplement for a long while and apparently this has suppressed my ACTH. If it's a pituitary problem does that mean there is no hope of ACTH coming back? The MRI scans should no issue with the pituitary or adrenal glands.

I just thought by being on such a low dose for a while now the ACTH should have come back. Or am i expecting it to come back too soon? Its reassuring to know most people have not had to rely on Pred on this forum and their adrenal function has come back.

PMRpro profile image
PMRproAmbassador in reply toSaffron2022

The MRI scans can only show the structure is OK - they can't show the very complex interrelationships of substances involved in the cascade are functioning normally. But the only person who can offer informed opinion on that is the endocrinologist - and preferably one who specialises in the area,

Gustie88 profile image
Gustie88

I’ve read Magnesium will lower ACTH and that has been my experience. I too have mild secondary adrenal insufficiency. It’s taken me a couple years to get back to semi-normal. Took prednisone for arthritis. My cortisol is in range, but on the low end and my DHEA is still well below range. Currently experimenting with MCT oil which is know to increase ACTH in many cases. Good Luck!

Saffron2022 profile image
Saffron2022

hi everyone, i know i took ages to reply back its been difficult managine everyday and the constant deathly fatigue.

I had a recent cortisol test and my levels are 47 at 30 mins and 60mins just 172nmol. Last year my results peaked at 223nmol at 60 minutes. It just seems to be going down even more. I dont have PMR.

I have a pipituary problem where it is not producing ACTH. Its been just over two years since i had my adrenal crisis took forever to recover. The Pipituary MRI scans were all normal. They said if it hasnt come back in two years the chances of the piptuarty to produce ACTH becomes less likely. As they have called in secondary adrenal insufficiency i have read it can come back on her and they call it secondary adrenal insufficiency.

I wanted to know if anyone had a lazy piptuarty that started producincg ACTH again even after two years. Im on 15 mg Hydrocortisone a day.

Also does anyone know the difference between Hypopturisum and secondary adrenal insufficiency. They both sound very similar

Thank you

PMRpro profile image
PMRproAmbassador in reply toSaffron2022

Primary adrenal insufficiency is when it is due to an adrenal fault. Secondary adrenal insufficiency is poor adrenal function that is due to something outside the adrenal gland - having taken pred for years or a pituitary malfunction for example. So hypopituitarism means there isn't ACTH to stimulate the adrenal production of cortisol - the adrenals can do their job but it is because the pituitary is faulty that they aren't doing it. Hypopituitarism is a form of secondary adrenal insufficiency - not all secondary adrenal insufficiency is due to the pituitary. Like all spaniels are dogs, not all dogs are spaniels ...

Saffron2022 profile image
Saffron2022

hi PMRpro, i had the adrenal crisis suddenly in may 2022 my levels were under 20mmol a few weeks after i was told to come in for a cortisol test there was partial recovery i was told to just take 15mg hydrocortisone. There after ever few months i would go for another cortisol stimulation test and the levels just keep getting lower and lower.

Endo said i have secondary adrenal insufficiency caused by herbal supplements but it just doesnt make sense as why would my levels keep going lower. Comsidering im on a low steriod dose. Theres nothing wrong with my piptuary. So i wondered do i have Hypopturism.

Im just worried that this may be permanent.

PMRpro profile image
PMRproAmbassador in reply toSaffron2022

There IS a problem with the pituitary - it isn't producing ACTH for some reason. But that problem MAY be secondary to a hypothalamus problem - it produces the trigger hormone for ACTH production, corticotrophin releasing hormaone, CRH. There isn't a STRUCTURAL problem with your pituitary, the most common reason for not producing ACTH is a tumour that damages or replaces the tissue that produces ACTH. But the receptors could be inactive for some reason. But a hypothalamus problem is more likely.

Saffron2022 profile image
Saffron2022

also endos dont seem to be concerned that the levels are less then they were right after my AC. I guess maybe this is something they are used to seeing.

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