Unfortunately someone I know has developed Adrenal Insufficiency after being on high dose steroids for GCA. Her current Endocrinologist doesn't know much about the adrenals/addisons and has been very neglectful, so I was wondering if anyone knows of one in the South East that is good with adrenal conditions, as well as thyroid please?
Thank you in advance!
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luna818
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Surely an endocrinologist specialises in hormones, so they should be au fait with conditions that affect the adrenal glands, which produce hormones?? Are you saying they are just a bad doctor?
How peculiar, these are endocrinologist bread and butter work. What have they done that has marked their card so badly? Having suffered from protracted adrenal insufficiency after GCA doses, I can say that one can feel dreadful for an awfully long time. There is no magic way of getting the adrenal glands started except perhaps changing to hydrocortisone which still doesn’t make it a walk in the park. Are they able to get a second opinion on the NHS? If I were to go private locally I’d see the same ones who practice in the NHS.
If they can't cope with adrenal insufficiency secondary to long term steroid use I would question what they are doing claiming to be an endocrinologist - unless all they do is diabetes, which is known.
But a bit more info about their case would help - when tested, what dose of pred were they on for a start? Above 5mg/day and it will look as if they are adreanlly insufficient when in fact they are simply on too much pred for them to NEED to work and produce cortisol. There is nothing an endo can do to improve the situation except supervise a very slow taper of the pred dose and provide emergency cover with a rescue pack and instructions. If the GCA is still active, then they need pred for that unless they can be switched to tocilizumab. And if the GCA really is gone, the only tast is to taper very very slowly and see what happens.
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