Very high insulin levels, anyone else?

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As I understand it, my long-term prednisone use for RA is causing multiple problems across other systems. My adrenal glands are kaput, liver is affected, and level is twice the normal level. I have been instructed to follow a low-glycemic-index diet.

I checked some of the other forums, and there isn't one I can find specifically for this problem. Just wondering if anyone else is trying to manage this.

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12 Replies

  • Posted

    Hi Karen, so sorry to hear about your condition. I didn't have this problem on prednisone but on Humira my adrenal gland and liver didn't do so well. It seems that you are having med induced diabetics or similar. (Not an expert...) so low glycemic index food is a standard solution for this. You should get appointment with a nurse treating diabetic patients. She/he should explain to you what to eat, what to avoid, etc. personally I chose to go off RA meds and seek alternative treatments, but it's way harder than low glycemic diet. Wish you luck with that!

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    • Posted

      Thank you! I will find a nutritionist. The endocrinologist gave no direction or guidance other than "do this." I have done a lot of reading, & I think I have a good start in the right direction, but Gosh it's confusing.

      Did your adrenal glands & liver recover at all after you stopped Humira? I was on that one too for a brief time last year, but didn't respond to it.

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    • Posted

      There are tables of glycemic index. Look these up. I was on such diet with one of pregnancies (too funny as I am hypoglicimic at pregnancies which is the opposite of diabetic, but they had no better solution). I was allowed 30carbs for breakfast, 15 for snack 2 - 3 h later, 30-45 for lunch (again, 2-3h later) another 15 for afternoon and another 30 for dinner. And I think it was another 15 in case that I am hungry. I was not ;-) these values are personal - I am tall, so more carbs can go in. This is why you need to talk to a professional. A quick guide - 45carbs is about a midsize potatoe. 30 carbs equal 2 pieces of whole grains bread. I was advised to always add olive oil as it slows down the carbs absorption. Few nuts and a yougurt are about 15 carbs. And a small apple or similar. Once again - I got this diet when feeding two humans. Maybe the values should go down had I been in this position not pregnant. Also, obviously no sugar intake, no chocolate and so on. Your perfect figure is on its way :-)

      As for the side effects of Humira? Gland got back to normal within a month or two. The encorinologost was shocked. Liver got back to normal after 7-8 months. Was not too bad, just abnormal readings. Two rheumies told me to proceed with the med... I didn't... Once again? Good luck and don't be afraid - it's just about changing your food habits a bit, no more than that. Better than aching...

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    • Posted

      I really don't know what enocrinologost is... Endocrinologist... Autocorrect sertaily has a sense of humor... Feel week, K!

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    • Posted

      And just to make everything 100% clear - I didn't have high insulin on Humira. High cortisol. But I began to feel hypoglicimic again, although the regular blood test for sugar was normal. Didn't take the sugar overload test to see if this is indeed hypoglicimia. When I got off Humira, the hipoglicimic sensation dissapeared within a month or so. Now we are totally on the same page. These meds seem to affect whatever they please. Sometimes it's high insuline. Sometimes it's low. Good luck!

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    • Posted

      Thank you! It gives me hope to hear the adrenal glands & liver might eventually return to normal. I found the GI tables & have spent hours trying to reconfigure my eating habits. I've been checking bg every 2 hours & have cut back on carb intake.

      Hypoglycemia has been my main concern. The highest I have seen my bg go is 126, & it will plummet for no reason I can make out, into the 60-70 range. When the endocrinologist did tests, my bg is too low & insulin is too high. Supposedly following a low-glycemic-index diet will help balance things out. I am working on finding a nutritionist today. It's a bit much to try to tackle without guidance. Thank you for sharing your story!

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  • Posted

    I Karen mine isn't caused by arthritis but I do have diabetes and so look al over the net and two of the best sights are diabetes uk and the American diabetes org you may find someone on these sights that can be of help all the best steve.b

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    • Posted

      Thank you! I'll do that. I've had it in my head that I don't have diabetes, so I have been looking in other places for information. But I probably need to start over & go to the diabetes sites first.

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  • Posted

    High BGLs are are well known side effect of steroids.   I'm on inslin so little different to your problem.   I manage mine quite easily by doubling my rapid acting insulin and quadrupling my night time dose.   My Hb1ac remains low at 6.5 and I actually find my BGLs easier to control.   Perhaps you should ask your GP about insulin treatment.   Moving to insulin is not a progression of the disease as most think and it remains the single most effective method of control.   

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    • Posted

      I have the opposite problem; my insulin levels are way too high & my bg is too low. I have read that they do try to treat with insulin, which seems counterintuitive, and also metformin. Did your docs say you have diabetes, or did they put you on insulin to address the high bg levels? Do you take insulin only?

      My endocrinologist was quick to say I don't have diabetes *now* but heading in that direction if I can't get this under control.

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  • Posted

    Can I ask you how much prednisone you were on and for how long?  I have been on 5 mg for about 3 weeks and I never want to go off...I feel so much better and ache so much less...but i really dont need the high b.s. levels!
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    • Posted

      I've been on varying doses (from 5mg to 40mg) interspersed with frequent additional big doses, such as medrol dose pack, cortisone injections & IV solumedrol. Continuously for over 2 years.

      I *loved* the prednisone at 5mg & even 10 wasn't too bad. I responded really well to it in the beginning; symptoms were quite manageable. Then I got sick last October & the dose was increased to 20mg. This is when all these other symptoms started. :0(

      Theoretically, small doses for short-term are the better way to go. Not everyone gets the high blood sugar levels. *I actually have high insulin levels & low blood sugar levels. It's a mess.

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