Hydrocortisone - good or bad?

[Amw66]

ACTH test for my daughter found a good response, but low base hormone levels. I don't have a copy to know how low (done under endocrinologist), but GP has said it was low but not overly low. I have requested a copy of results.

My initial feeling was that if ATP and magnesium are low, then this would account for low base hormone levels as these are required for synthesis. ( i am not very science oriented but trying- probably in both senses of the word)

Hydrocortisone has been prescribed 10mg tablet split into 2 doses daily and she has been taking this for 8 days. ( first two days we had 1/2 tablet spit into 2 )

My query is re effectiveness and side effects. As I am trying not to present as a completely neurotic mother at GP/hospital can anyone advise re the impact of these with ME?

• She is feeling much more fatigued- generally not able to turn over in bed til 10.30/11am sit up in bed til after 2pm ( this may reflect the sleep shift)
• Sleep phase shifted more ( sleeping later)
• Lymph glands swollen up ( but this happens a lot)- underarm lymphs very swollen predominantly on one side- lower immunity?
• Hips very sore ( she does get sore hips, this seems to be an intensification)
• Shoulders and neck sore - this is muscular ( she gets muscle " shlumps" - essentially muscles tight/ spasm at connection with " ribs" near shoulder blades and neck- area this is happening over is extended ( may of course have nothing to do with HC)
• Joints more sore
• Eyesight worse - but this may be due to increased tiredness

She did feel positive after endocrinologist appointment as she felt that he would actually look at tings and do something - a novelty. Current experience is etting her down.

We are waiting for appointment for MRI to check out pituitary/ hypothalamus

If anyone has any experiences similar to this were they able to resolve them?

 

[Helen]

@Amw66, I´ve been through all stages of cortisol levels from almost any (serum cortisol 6 (200-800)) to unmeasurably high. I would contact your daughter´s doctor and tell about her new symptoms that aren´t common while on cortisone treatment.

Low hormone levels are common among PWME and some of us seem to be genetically sensitive to cortisone. Maybe your doctor would be interested in this:
https://www.ncbi.nlm.nih.gov/pubmed/28231836

I think you are a very caring mother

 

[Amw66]

Thanks Helen. I have emailed the document and the recent low T3 paper to GP form onwards transmission to consultant.

Our GP halved the dosage and this helped (10-5mg), however there is a definite dose response and symptoms flared up again after a few days of skin getting better. I think this may be to do with liver issues- she seems to have issues with phase 2 pathways, and if these are going slower (particularly sulfation and glucuronidation) then it will cause a backlog and increase oxidative stress.

Currently on 2.5mg/day and face looks as though a kettle of boiling water has been thrown on it (without blisters), is very red , sore, swollen.
GP escalated initial skin problems back to endocrinologist 4 weeks ago and is yet to get a response....not wonderful for a teenager.

In that marvelously resilient black humour that abounds with ME, she as announced that she will be going to comic-con this year as Deadpool - non need for a mask!