Mum's journey with adrenal insuffiency and hypothyroidism

[quicklyinsignificant]

Hi team,

Mum was recently hospitalised with neck pain, pinkeye and then foot pain, on two separate occasions, to two different hospitals.

Mum has a history of adrenal insufficiency and hypothyroidism. She takes two 5mg cortate acetate per day.

Previously, she had anaemia and low neutrophils as well but we treated that with supplements like B12, B Vitamins, Iron with Vitamin C and so on. She also exercises regularly and will soon be starting again.

The thyroid test we had indicated her TSH was high at 5.9. Now that she's taking a thyroid supplement, the neck pain has reduced and the foot pain has reduced.

We are having more tests done next week, including. Vit D, Red Cell Folate and B12.

Any thoughts and advice is appreciated.

The Endo says she’ll never produce her own cortisol and will be on cortate acetate for life. She still looks pale and has some foot pain.

[PMRpro Ambassador]

I'm far from sure we can help you - any of us with adrenal insufficiency here have it secondary to long term used of corticosteroids for a rheumatological condition, PMR and GCA. Most of us do recover adrenal function in the long term but it is a tough journey for some.

I'm not quite clear what sort of advice you are looking for - you haven't told us much about your mother, age, clinical background and so on. I wish you all well.

[quicklyinsignificant in reply to PMRpro]

Thanks for replying.

It appears I chose the wrong forum but it's interesting that you have it to treat a rheumatological condition. How did you recovery your adrenal function?

Mum's 69 and she is just starting to exercise again, which is great.

[DorsetLady PMRGCAuk volunteer in reply to quicklyinsignificant]

As said our adrenal insufficiency is known as secondary and is due to taking steroids for as long as our illnesses require them.

For info only, maybe have a look at this re taking Pred (steroids) for our auto immune diseases and the effect that has on adrenals. Once the dose of daily Pred is down to around the physiological level of cortisol the body would naturally produce, the adrenal have to take up the slack. For most people they do, but it can take quite a while.

Your mum’s situation is somewhat different.

healthunlocked.com/pmrgcauk...

[quicklyinsignificant in reply to DorsetLady]

Thanks for replying and sharing your thoughts.

It was worth joining this community just to learn why you take steroids.

[PMRpro Ambassador in reply to quicklyinsignificant]

DL has answered while I was out - The majority of people on pred for our conditions do recover function as they taper the dose but it can take a long time - months rather than weeks - and some don't, in which case they stay on pred. DL was able to stop pred after about 4 or 5 years, I've been on pred for 15 years and now really struggle at below 7mg but that is doing dual duty managing the PMR and covering the lack of adrenal function. I feel reasonable there - which is all my wonder rheumy wants.

[quicklyinsignificant in reply to PMRpro]

Thanks for replying and sharing your thoughts, too.