I have adrenal insufficiency and on liquid prednisolone. I have been on this for quite some time because of other autoimmune problems as well.
I notice that my energy is at rock bottom as I am very weak in myself atm. I am on a reducing regime of prednisolone via my rheumatologist due to long term problems the steroids have caused. However I notice I have tremors in hands weak legs and blurred vision on the slightest use of any energy used. Even just walking because pain is a big problem for me.
I am writing because I don’t believe I should be having these issues if on enough steroids for adrenal insufficiency and autoimmune problems. They still want me to go lower.
Anyone else get these issues? Even eating can cause sweating and worsening blurred vision and weakness in legs. It is worse first hours of the day. By teatime it does not seem as bad. It starts again the next day though.
My autoimmune condition is not under control as still under investigation.
Thanks
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friz42
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Sorry I did not give enough information. 75mg Levothyroxine. My tsh has been checked numerous times and always pretty good. On the lower side of range but good. I am from the time of Dr skinner and saw him many years ago now. (Those that remember him) . I have progressed to perforated bowel adrenal insufficiency lung ild of some kind mobility issues Sjogrens a lot going on and possibly vasculitis.
Lots going on. No herbal stuff . Vitamins iron b12 all ok on Adcal and had b12 injections.
I guess long term if on this change permanently will get tsh tested again.
Hello no I am going down the adrenal insufficiency side really. Many years ago I did all of what you suggest and nothing came from it. My symptoms progressed to much more serious problems. Hence long term steroids and adrenaline insufficiency.
I have done everything in the past and my problems are complex. I am under Addenbrookes and good people there. I am still proving difficult to manage.
Yes Vit d all good. I have had years of this so this site was my starting point. Little did I know what was to come .
Friz getting just tsh tested to gauge your thyroid status is not good enough. By looking only at TSH you are assuming that your body is working perfectly and you know that is not the case.In a healthy person the thyroid hormone levels in the blood, ft4 and ft3, are part of a feedback loop that determines the level of tsh to keep everything at ideal levels.
However, for us folks, this feedback loop is distorted or broken. Just because tsh is within normal levels, you cannot assume that your thyroid hormones are also at normal levels or at normal levels that are adequate for you .
This is why we need to monitor our ft4 and ft3 and find where within their normal levels or ranges we feel at our best .
frizz 42 have you ever had your sugar levels tested I have had adrenal insufficiency for years and sometimes my glucose levels would drop my legs weak sweating blurred vision all that you mention , it's just an idea and may not be connected to your thyroid problem or as you say your complex like me!!! best of luck xx
hi yes I do think they go low sometimes. I have the distinctive brown markings on my hands which never go so think it’s to do with cortisol levels etc . The blurred vision etc can be made worse after I have eaten and weak legs are even weaker. Like digestion affects me as I feel my body is really weak atm. I have so much active inflammation (unsure what it is yet) and feet that have Collapsed on me as I’m gone flat footed and so it goes on. I am worried by it all and having to think private root for some of this. I have not got diabetes nor pre diabetes but my daughter is type 1. Thanks anyway,
l am on 9 mg a day of prednisolone. Mixture of 5 mg dissolving and normal 1 mg x 4. I reduced from 15 ml ( liquid prednisolone) but still had terrible symptoms. I reduced because the steroids were causing me problems as in fractures and possibly diabetes in the foreground maybe. I am always flaring with my condition as not found biologic to help yet.
In addition to the symptoms you mention in the first post you also later mention, "I have the distinctive brown markings on my hands which never go so think it’s to do with cortisol levels etc .". Hyperpigmentation is one of the typical symptoms of Addison's disease (autoimmune adrenal disease) . Were you actually diagnosed with this and if so, have you also been prescribed with fludrocortisone alongside the prednisolone?
No it is adrenal insufficiency. By long term steroids. My calcium and potassium are both ok. I have brown marks on right hand mostly .! I have thin skin because of steroids that bleeds with slightest knock, However the brown marks are distinctive and never go away. Had them for months/ possibly 2 years at least.
I am under endocrinology but they will not do anything else until down to 5 mg of prednisolone.
I am classic shape of weight around the middle and soaking sweats. Extreme fatigue and thirsty. I crave sweet things and juice drinks and am dehydrated.
Have you tried Hydrocortisone instead of Prednisolone? I was taking 40mg of Prednisolone because my breathing was so poor but when my pituitary specialist saw my SST results and confirmed I had adrenal insufficiently and he wanted me on Hydrocortisone. I swopped over to Hydrocortisone and managed to get the dose down to 10, 10, 5 but all my breathing problems went within a couple of days. I am much better on the Hydrocortisone. Heather
I have tried hydrocortisone in the past and found taking it 3 times a day felt no better for it. I may try it again at some point but the endocrine team are not planning on seeing me atm.
I am trying a new routine with the dissolving steroid tablet and normal oral ones to see if any difference symptom wise.
As you know, your adrenals are shut down from exogenous steroids. You are getting cortisol, but have lost the other hormones the adrenals produce; importantly Pregnenolone and DHEA. Perhaps try adding small doses of these 2 hormones and see how you feel? Wishing you well.
I will ask. Unfortunately when I phone I always get the practice pharmacist and there are no further appointments booked for me . (She is helpful).
My last appointment last August did not get written up. (Maybe an error or forgot etc). I think they have no plans to see me until on 5 mg of prednisolone.
Keep a food diary, and report the next day on how you are. It is really easy, buy a diary in a pound shop, and keep notes in it. Then look out for patterns..like underline in blue when feeling fine. Yellow when sick…can be fun.
There may be a relation between what you have eaten and how you feel.
Avoid xnthar gum…..from tests I have made, it erodes the mucus membrane in the body.
Try a paleo diet. After being a veggie for thirty seven years , eating meat sorted most of my issues. Sorry , wish it was not so. We live the life with the cards dealt us. Ho hum.
Create as simple a life as possible, and enjoy as much as possible.
Thank you for your reply. Lots to think about here. Although I am having more issues with pain and inflammation than anything. It has a big impact on doing anything.
I am trying a new regime of timing of tablets at the moment also as the past ie 7 am etc did not work for me. I realise that now . Will continue to monitor though as lots of other issues as well. Diet does make a difference I agree.
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