My 16 year old daughter has ME. HPA axis dysfunction can be part of this . After ACTH test endo put her on hydrocortisone as base hormone lowish but response ok.. 10 mg day. Started at 5 first 5 days then 10 mg . After 3 weeks face a mess, joints sorer. Gp halved dose, ok for a few days, skin started improving, then got worse. Dose halved again ( 2.5mg) . Daughter looks like burn victim on face and skin is crawling.
Waiting for MRI for pituitary.
She has skin issues with salicylates ( orange and yellow colourings) and some bleached things ( similar liver pathway - glucuronidation)
Any hints for a clue?
Written by
Stuki
To view profiles and participate in discussions please or .
Hi there, sorry to hear about your daughters struggles. Was it a synacthen test she had done? Can I ask what the results were? Baselines cortisol, response and ACTH. I’ve recently been diagnosed with lymphocytic hypophysitis. I have found along the road that many endo’s have very poor knowledge on HPA axis dysfunction. That’s not to say yours does but it’s just a hard lesson I’ve had to learn, just something to be aware of. I’d imagine her ACTH was low if the Endo is leaning towards a pituitary MRI. Just handy to know before I can give more informed advice.
I’m still quite new to HPA axis dysfunctions but as I understand cortisol plays a role in a histamine response. So when the HPA axis is affected and thus cortisol levels, histamine responses/allergies responses can be over exaggerated/person can be more susceptible to allergens.
I wonder if it is her dosing schedule that is the problem. Why she initially responds and then starts to feel horrible again. If the HC is for HPA axis. Many do better on circadian rhythm dosing. Have a look at the CAHisus page, lots of informative information on there. Hope that helps somewhat.
I really am sorry to hear about your daughter. I wish I could give you some sound advice. I have low cortisol levels and am waiting to see an Endo. In the meantime I have been seeing a kineasiologist. My understanding is that diet needs to be "clean" no processed foods; sugars; caffeine etc but sometimes we forget it is also to do with what products we use on our face and body. Perhaps look at this for the time being until you get a more accurate diagnosis.Especially as histamines are compromised. Look at all toiletries being paraben perfume free and see if this helps! Plenty of supplements and minerals to support the adrenals. Vit C but not ascorbic.
Good health to your daughter.
That sounds like quite a strange reaction, do you think it is the steroids or perhaps something else which started at the same time? I'm on Hydrocortisone due to my pituitary not working very well, I take 20mgs split throughout the day but haven't had this kind of reaction to it. Might be worth talking to the Endo again.
I suspect it's the steriod/ liver interaction - it's like a dose response. We discovered the salicylate/ benzoate issue after chickenpox. She had shingles when 10, and glandular fever at 14 so chock full of herpes viruses, so I don't rule out virus reactivation causing a spanner in the works.
The salicylate seems just related to colourings and mainly in medicines, the benzoates is bleached food ( white sugar, flour and rice - but we don't eat much of them anyway and it is a build up thing, once you hit a level the skin responds - but in specific areas on her face, cut them out and it dies down). Some fillers in medicines/ food can cause issues.
Low vitamin D prior to ME diagnosis saw same reaction from both high dose capsule ( colour in gel coating), and from drops - synthetic vitamin E which is similar chemically. Liver implicated again perhaps?
The vit D brought out a different part of her face, gave her very swollen eyelids ( looked like multiple eyelids) and a limited area on her hands - very weird.
I suspect that the steroids are similar- once the phase 2 detox pathway is blocked/ running slower than phase 1, then you get issues. It seems a lot like Gilberts without the bilirubin issues.
I don't have figures from the tests - GP advised that the ACTH test wasn't bad ( endo said she had a decent response) and that the endocrinologist had referred to a low base hormone level - this is seemingly quite common in ME by members on ME forums, but there are no ME specialists here. I think the hydrocortisone may have been to address fatigue ( bit of a misnomer,there is fatigue but fatiguability is the main issue)
We do know form private testing that she is low in ATP, has poor ADP to ATP conversion, low intracellular magnesium- this suggests that calcium is also affected, and oxidative phosphorylation is below normal - so big issues with energy generation. Glutathione is low, suggesting oxidative stress is an issue. Recent test by nutritional practitioner found electrolytes low ( calcium, sodium, magnesium, potassium)- there's normally an inverse relationship.
I don't have a lot of faith in the endo - first appointment he had no notes, took very little history and would have dished out thyroxine like sweeties. I pushed for HPA axis investigation, hence ACTH test. I suspect his main normal clinical focus is diabetes. i think the pituitary scan is to see if it's a brain issue ( signalling) or a thyroid hormone issue.
there is a paper published recently re a low T3 in ME/CFS - the body has basically down-regulated to a hypometabolic state across all systems , with higher rT3 contributing t a " torpor" state.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hydrocortisone and T3 only
Side effects
Hydrocortisone for adrenal fatigue
Blood levels and side effects, anyone
Levothyroxine side effects
