Help.... I want to stop taking my steroids for Adrenal Insufficiency. Has anyone stopped steroids??

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I was terribly ill for 3 years prior to diagnosis and it's been another 2 years since diagnosed and started steroids. I feel like the side effects from taking medications are doing more damage than good and just want to stop treatment, Has anyone ever stopped treating their adrenal insufficiency???? I'm desperate and have been tapering Hydrocortisone and estrogen.

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  • Posted

    hi Salenna

    I am not an expert in this but have you figured out what kind

    Of adrenal insufficiency you have, like

    Primary, secondary or tertiary

    Primary is more likely to have an adrenal crisis

    and may require some steroids until

    Your underlying condition is resolved

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  • Posted

    Hi,

    My partner and myself tried, with the help of our present endocrinologist to taper our hydrocortisone. We went from 40 mg/day him and 32.5 mg/day myself 18 mg/day. We both had to increase to 20 mg/day. That was the second time we we had tried to wean off. We cannot. You really need an endocrinologist who knows a lot about adrenal insufficiency/Addison's disease, to guide you and give tests and listen to your symptoms. If your adrenal insufficiency is autoimmune, then you have to take HC the rest of your life because is incurable. If it is adrenal insufficiency you will withstand tapering without symptoms... I'd like to know what are the side effects HC is giving you... Estrogen can be tested more easily, if it is too high, then the problem may be the estrogen. But what side effects is HC giving you ?

     

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  • Posted

    I did read a patient story a couple months ago

    Where they felt pretty good on a low dose

    Like 3mg but between 2-3

    I do believe that you could use some help

    Tapering to a lower dose

    Good luck

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  • Posted

    If your adrenals were working normally, they'd be producing about 20mg of cortisol [a natural steroid!] a day and have been doing that since before you were born. Hydrocortisone is a copy of cortisol. The only significant difference is that cortisol production ebbs and flows during the day and night according to a natural cycle, whereas you have to take hydrocortisone in 'lumps'. Some people find it more comfortable to spread their intake to match the 24 hour cycle more closely instead of the usual 10/5/5

    If you are ill, have an inflamation or an impact trauma, a normal pituitary will prompt normal adrenals to double, treble or more the natural cortisol production. If yours don't do that, you have to ramp up your intake of hydrocortisone instead. If you stop taking it, sooner or later you will suffer an adrenal crisis and, without urgent treatment, you will die. [Taking it means you get a few hours leeway]. My own experience is that when I finally got diagnosed, my cortisol level was almost on the floor and I was like a zombie. Going on HC made me human again so I wouldn't consider dropping it for one nanosecond.

    The bad press for steroids is certainly justified if people take it when not medically necessary or for longer than is really essential. If your cortisol production is usually ok, a very temporary boost in extremis is ok - but the reason to wean people off such a top up is so that the "HPA axis" (see wikipedia) doesn't get lazy. If your adrenals don't work for whatever reason, this weaning is pointless and dangerous.

    All of the above was explained to me by a real Professor of Endocrinology, not Doctor Google smile

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    • Posted

      Whoops, that must have seemed unsympathetic!

      I ought to have introduced it by saying this: if you have adrenal insufficiency, then the problems you are experiencing will not be improved by stopping HC but will be made a lot worse. I believe you are blaming HC only  because it is obvious, not because it is the real reason. My reason for saying so is as per I've already written. You need to go back to your endo and ask what else could be malfunctioning such as to cause your continuing symptoms. They are not normal.

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    • Posted

      You are very  lucky to have met a Professor of Endocrinology who explained all the process of cortisol and that. The Professor I met ordered me to cut down too much per week and I thought I was dying, so did my partner who is in the same boat as me. We had to increase quickly to avoid the adrenal crisis. Unfortunately not all the Professors of endocrinology know how to explain things to the patients. I have now a small tumor in the pituitary and I do not know what are the consequences of it, nor does my endocrinologist. . .
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    • Posted

      First and foremost, pituitary tumours are almost never malignant.

      Otherwise, there are two possible results of having a pituitary tumour: (a) signal hormones  not being switched on due to failure to sense deficiency or (b) not being switched off due to failure to sense sufficiency. The one people know about most is ACTH (Adrenocorticotropic hormone): not switching on means secondary Addison's and not switching off means secondary Cushing's. Neither are very nice, which I why I wrote to Salenna that stopping her HC is not a good idea unless she has had spontaneous recovery from her Addison's (v unlikely).

      In your case, the effects are likely to be subtle while it remains a microadenoma. All your endo can do is wait and see what your regular blood tests reveal and hopefully it will be picked up before you feel the worse for wear.

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    • Posted

      I only would like to know which kind of tests I need. Then I would ask for them (in a kind of diplomatic way);  my endocrinologist commented that the microadenoma was very small (3mm). He only wants to treat my thyroid gland. Australia is a very big country with a population of 25 million living mostly near the coast. Endocrinologists are very thin on the ground...
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    • Posted

      So here is the problem: while it is that small, it won't be evident what effect it is having or will have, if ever.Taking it out at this stage is very likely to cause more problems than it solves - if it ain't broke, don't fix it.

      The pituitary is responsible for a raft of signal hormones that tell other organs to produce (or not) the major hormones. As the adenoma grows (very slowly), it will cause a very gradual change of function (under or over production of signal hormone[s]): the fact that you know it is there means that you can look out for changes. I guess you are already get a regular blood test for "free T4" for your thyroid function. A cortisol and an ACTH test every few years will do no harm and will pick up any significant change in adrenal function. Ask your dentist to measure your jawbones and remeasure every check-up. I guess you would notice yourself if you start lactating!

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