Ok, this is most probably "an old fish" for most of you, but I hope I can profit from your knowledge and personal experience. Due to POTS and due to low cortisol it was suggested (by two or three doctors) I'd take hydrocortisone, 10-20mg per day. I remember longterm intake of (hydro-)cortisone can be problematic in ME. Is that correct? Are there experiences? Do you have suggestions? I would have started with 3mg in the morning. I wouldn't take 10mg. I will be checked for Osteoroposis next week. In Germany, Calcium isn't prescribed with cortisone. I remember Calcium needs to be taken, too. How much? Already lots of thanks for a reply!
Didn' t work for my daughter. Set her back 6 months , but she dosn' t have POTS. There are glucociglucocoid sensitivity issues for some. Check out papers by de vega (?) You could perhaps x reference genes from your WGS to see it you may be affected.
Dear @Inara, If you take less than your adrenals are already producing then your adrenals willsimply cut back by the same amount and you will be exactly the same as before. If you take more your adrenals will stop bothering completely and atrophy - which means you are effectively addicted to the cortisol and may collapse if you fail to take it or have diarrhoea. There has to be a very good reason for taking glucocorticoids and the dosage needs to be recommended by a competent physician. I don't think anybody here is in a position to influence your thoughts on dose and we should not try to anyway.
Thank you @Jonathan Edwards. That just confirms that I feel I should be cautious. I trust those doctors that suggested cortisone, but I don't know if they're competent regarding this. I asked @Amw66 for a dosage to get a picture. I have dosage recommendations. But I remember people with ME might have trouble with glucocorticoids. I don't want to make it worse. Right now cortisol seems to be produced, not enough, but a bit. That's better than nothing. But I also have hypothyroidism and low estrogen, progesterone and testosterone, so low cortisol isn't so surprising.
The adrenal issue is key. From posts here and the other place adrenals seem a poor cousin to thyroid issues, yet failure to address adrenal issues will screw a lot up.UK does not seem a wonderful place for endocrine problems, though i' m sure there must be some good consultants and it may be the postcode lottery of care issue again. Our experience has not been good, though endo came over as sympathetic. My daughter had an ACTH test which found low base cortisol but stress response was good. The endocrinologist specialises in diabetes ( gives you a hint for my location) , and i honestly think he thought he had to be seen to be doing something. I had provided the de vega paper, the low T3 paper - but he never looked at them. Dosage was 10mg / day. We started at 5 and worked up. Side effects were evident on2nd - 3rd week and worsened. Tapered off after 6 weeks. Steroids seem to be an issue. I think it may be due to detox problems with certain compounds. Everyone is different- perhaps more so with this illness. It is definitely not a one size fits all.
There is a reason why they're usually only prescribed for only a short period. I haven't searched here, but on 'the other forum', I remember there were plenty of horror stories if one fell for 'The Safe Uses of Hydrocortisone' approach...
@Amw66, can you link to the de Vega paper and the low T3 paper? Or do you have more search words? I can't find it. Dear @dannybex, there was no mention in my case of only taking it shortly. I was prescribed 10-20mg. When I had to take 50-75mg, this was only for some days. I remember, regarding progesterone and estradiol, the doctor gave a smaller dosage at the beginning with longer breaks, in the hope the "glands" would start producing them more. But this never happened, and it seems I will have to take them permanently. What do you mean? Some 4 or 5 years ago I had a cortisol test, too, and although it was normal, low cortisol started showing (in the morning; surprisingly enough, after a 3 hour spinning session in the evening, the cortisol was low-normal, where I would have expected a higher value).
De Vega has done a number of papers on glucocorticoid function - they are all listed on ME-Pedia, with text access : the epigenetic paper of 2017 may be of interest given you have your WGS https://me-pedia.org/wiki/Wilfred_de_Vega The low T3 paper suggests a hypometabolic state ( perhaps a link to the dauer state proposed by Naviaux. Whilst it refers to a low T3 syndrome, I think perhaps it is more a low T3 state. It was summarised on MEA website in March with a link to the paper https://www.meassociation.org.uk/20...levels-of-key-thyroid-hormones-20-march-2018/ https://www.frontiersin.org/articles/10.3389/fendo.2018.00097/full By the term parked, I mean that you can be on hydrocortisone long term if your adrenals atrophy - I don't think it is a medication for long term use, an I don't know if there is other medication that can do the same job. There are lots of factors in thyroid and adrenals and cofactors can be crucial as some are rate limiting steps. Perhaps with the energy and electrolytic issues in ME this affects basic things like cellular pumps- everything is on go slow....
Wow, thank you @Amw66! Indeed, I also do not convert ft4 into ft3 enough so I'm also taking T3 which helped a lot. (For instance, I now have normal body temperature.) I don't know if my adrenals atrophy - right now, I don't think so. This hasn't been looked at.
