On the eve of Thanksgiving [Wednesday last] I received a call that my labs now show hypothyroidism and anemia, atop hyper insulin production and adrenal insufficiency. My renal profile is a bit off as well. An MRI of my pituitary gland is out due to the pacemaker placed during an early emergency. I'm wondering whether this is secondary to the three years I had of swelling and/or four years [so far] of low-dose hydrocortisone. I am trying to wean off the "evil" steroid but it is a slow process. Thoughts?

Hi I don't know if this will help, but I will tell you my personal experience. My autoimmune disorder started with thyroid problems. It has progressed to SCLS and other autoimmune diseases. My Dr. is fairly certain that Medrol is responsible for my adrenal insufficiency. He is also watching my A1C, because he is concerned that Medrol use can lead to diabetes. My Dr. has attempted to wean me off of Medrol unsuccessfully multiple times. I have an absorption issue and I am also anemic. My GI, HemON, and my Immunologist are working together to keep my iron level normal. When I am in capillary leak my hemoglobin is high but sometimes my iron saturation is low. I receive iron infusions and vitamin shots for these issues. When I asked about my own autoimmune diseases, the explanation that my Dr. gave was that once the autoimmune process is tripped it can leave your body to open to other types of autoimmune disorders like thyroid problems. I am So sorry to hear that you were ill during the holiday. Kimberly

Thank you, Kimberly. That was very helpful.

Yes that is very helpful, Kimberly. I now have several(at least 4) diagnosed autoimmune conditions and the SCLS was the first ( as far as I know). It was explained to me that AI problems come in 'cascades" which is what you are also explaining. What dosage of Medrol are you taking? I have tried unsuccessfully to taper down twice so far

I am on 10mg of hydrocortisone per day, split between two doses. I am weaning at a miniscule rate of about 10% per 90 days. Hope that helps, Susan

Thanks. Maybe I weaned too quickly. I started at 60mg, then they got me down to 10 over a long period, then 8 and have gone from 8 to 3mg in 3 months- prednisone which I am guessing is the same as hydrocortisone. I get awful muscle pain when I get below 5mg. I take mine in the morning only. It keeps me awake at night if I take it after 11 am

Prednisone is much stronger per milligram than hydrocortisone. Thus, your weaning schedule was much more aggressive than mine. Even with my very slow wean, I have to wait more than 90 days sometimes to stabilize. By using a 10% reduction of the most recent dose, rather than the original dose, the weaning is also easier on my system.

Thanks.please could you define the word 'stabilise' and 'easier on your system' to your physical symptoms? I am trying to understand how it affects you. Thanks

When I first reduce the dose, and the small deficit in the cortisol hits, I get groggy, have mild-to-moderate joint pain, and a fuzzy brain. It takes several days to a couple of weeks for these symptoms to fade. Hope this helps.

Thanks. yes that is what happens to me.

Just an observation. An adult's body normally produces about 4mg equivalent of cortisone per day, all things being equal. So many people whose adrenals have been suppressed cannot go below this level. Equally, 4mg of prednisolone orally per day 'should' have little adverse effect. The adverse effects of higher doses include suppression of the immune system, ( which is why it is used for auto immune disorders), effects of glucose, protein, and fat metabolism, hence the high blood sugars and A1c levels, and salt/potassium/electrolyte handling by the kidney, often causing oedema. The mixed effects of steroids also decrease vascular permeability, thus helping attacks of SCLS. Gradually tapering doses of steroids are well used in polymyalgia rheumatica, a condition marked by severe body pains and fatigue, and whose hallmark is a high sed rate. If the dose is tapered too fast, the myalgia may return with a vengeance. The bottom line is that steroids can be life saving, but also very difficult.

Thank you, John. It is, indeed, a tightrope. My adrenals are very slowly rousing, but the need to stay out of metabolic syndrome is also important and tricky. A physical and intellectual challenge. I would prefer the New York Times Sunday crossword puzzle. :)