Taking high doses of prednisone, long term side ef

Hello Everyone, So I was searching for some answers to some new symptoms I've been having and thought I would ask people here since it could potentially be the prednisone I took for ITP that is causing the symptoms. I am male and 27 years old now. I was diagnosed in 2004 with ITP (my platelett's dropped as low as 21k I think...it was a long time ago) and I started seeing a hematologist. I was put on prednisone (as much as 80mg a day) for a year. My count would be normal while on high doses but would drop back down when the doses were low. The side effects were really bothering me and my hema suggested a splenectomy and I went ahead with it a year later. (April 2005)

My platelette count has been fine ever since. I have them checked every 6 months to be sure and my count was 340k last week. The surgery went fine. Though when they got in there, my spleen apparently was quite a bit larger than expected, had two baby spleens, and it had it's very own blood supply which surprised the surgeon. All in all, it went very well.

My eating habits were quite bad back then and while taking the prednisone I got up to 230 pounds, none of it muscle since I didn't work out. Well, a few years later I decided it was time to get in shape so I started working out. An hour of cardio 6 days a week plus lifting weights. I lost 70 pounds and gained quite a bit of muscle and thought I looked amazing and felt pretty good. So I cut back on the working out and started doing cardio 30-45 minutes twice a week and weight lifting three days a week. Eating habits are still great (or even better) and I gained 40 pounds back in a matter of about 6 months.

My cholesterol and triglycerides have been high for years (270's for Total, 170's for LDL, and 200+ for triglycerides before the dieting and eating healthier). After changing my lifestyle and eating healthy my triglycerides dropped to 140 but my total cholesterol and LDL stayed the same.

I am curious if anyone knows of a relationship between high doses of prednisone and something like Cushing's disease (syndrome). I know prednisone causes Cushing's while you are taking it but can't find much on the long term effects. It is really difficult to find a doctor that is willing to listen to me and run the necessary tests. When looking up Cushing's, the symptoms sound exactly like what I have.

Well, I would think if you had steroid-induced Cushing's, it would have gone away in time when you stopped the steroids. I suppose it's possible to have acquired Cushing's after that, and you'd need to see an Endocrinologist to run an ACTH - I don't know why that would be hard to have done.

Other than the high cholesterol and weight gain, what are your symptoms?

Constantly fatigued, going from really cold to really hot all the time, headaches, migraines, thirsty all the time no matter how much I drink (though I don't have frequent urination) water retention. The additional weight seems to be confined to my abdominal section. I get bug bites a lot on my ankles (the mosquitos just love him) and it takes a very long time for them to heal. I also have a problem with canker sores (ulcers in the mouth). Though a gluten-free diet seems to help that.

I originally suspected my thyroid and my TSH came back as 2.7. The doctor said that is borderline and for some people it is considered enough to warrant medicine, so I am taking 50mcg of levoxyl and it lowered my TSH to 1.1. Though, from everything I've read online, if you are taking levoxyl your TSH should drop to well below 1.0. Taking the meds, my fatigue is better (but still present) and I still have issues with being cold often. Before starting the thyroid medicine, my normal body temperature was in the 96's. It has come up some since then.

I also always have a low temp too. A fever for me is 99 degrees +. My daughter has low temp too (she has Graves). I can tell you that she also has a good TSH and still has a lot of thyroid symptoms, so although you read that treatment should help, sometimes symptoms remain.

Thirsty - could be Sjogren's. There is a blood test for that. Sometimes when you have one autoimmune disorder, you are more prone to attract others. You could have several things going on. I'd start with having Vitamin levels and electrolytes checked and go from there.

altsax2003 wrote: I originally suspected my thyroid and my TSH came back as 2.7. The doctor said that is borderline and for some people it is considered enough to warrant medicine, so I am taking 50mcg of levoxyl and it lowered my TSH to 1.1. Though, from everything I've read online, if you are taking levoxyl your TSH should drop to well below 1.0. Taking the meds, my fatigue is better (but still present) and I still have issues with being cold often. Before starting the thyroid medicine, my normal body temperature was in the 96's. It has come up some since then.

What doctor would put you on thyroid hormone with your TSH being 2.7? MD, endocrinologist?
Why would thyroid hormone drop a TSH to "well below 1.0"? - stop reading online.

"well below 1.0" would be hyperthyroid and believe me you don't want that - nor is the goal of taking thyroid hormones to get one's TSH "well below 1.0"!

The range the American Association of Clinical Endocrinologists recommends for TSH is 0.3 - 3.0 [can't remember if for everyone or those treating - my lab still has the range as 0.5-5.0] - that is why I wondered what type of doctor put you on thyroid hormones with a TSH in the normal range. Thyroid hormones aren't something that should be taken lightly! I'd see an endocrinoligist for a 2nd opinion!


Edited to add: If one is taking thyroid hormone and their TSH goes "well below 1.0" they are probably taking too much thyroid hormone.

I thought that was odd too, Melinda. .3 to 3 is the goal for thyroid ideally. Have you been tested for thyroid antibodies? Those do not have to be present to have a thyroid disorder, but I've read that a person can have symptoms due to antibodies even if TSH is in normal range.

While getting stabilized for Graves, my daughters TSH bounced between .01 at diagnosis and 40 after starting Tapazole. If you do have antibodies, Levoxyl may not be the best drug.

I am seeing an MD and he told me that 25% of people will have symptoms of a thyroid disorder if their TSH is above 2.5. He originally put me on 25mcg of levoxyl and rechecked me 3 months later and my TSH dropped to around 2.1. He doubled it because he said he wanted to get my TSH to just below 1.0. So in my research that I have found online, this all seemed reasonable. I found a great number of reputable sites that agreed.

He checked my thyroid antibodies and they came back normal. I have had almost all of my vitamins checked and they are all normal as well. My absolute monocytes and lymphocytes have been on the high range but only a couple hundred over the high range. I really don't want anything to be wrong with me, I feel I have had more than my fair share of rare and odd disorders over the years but I know something is not right.

More backstory...When I was 12 I started getting bad headaches constantly and it took weeks if not months for them to figure out what was wrong. It was pseudotumor cerebri which is too much intracranial pressure from a buildup of fluids. My optic nerve got pretty swollen and my vision was permanently messed up (thankfully not too bad though, I had Lasik 5 years ago to correct it). By the time they figured out what was wrong and they did a spinal tap, my pressure was well above normal and my doctor said I should have had a stroke. I have no memories from before then though and have a hard time remembering things now. I also got diagnosed with epilepsy when I was in high school and they put me on Zonegran....which they think may have been what caused the ITP but they are unsure. Thankfully I've never had a full blown seizure though.

I am going to see a neurologist for the first time in about 8 years next week, I am well overdue for that.

To be put on a medication when one's results are in the normal range.............

My advice - and then I'm going to shut up because I don't think advice is really being sought here - get to an endcrinologist!!

Thanks for the advice, it is definitely on my list of things to go and do. It's a matter of finding a good endocrinologist to go and see.

Advice is what I came here for, I am just presenting ya'll with all the facts that I have to see if anyone has experienced similar symptoms. I understand that ya'll don't necessarily agree with my MD giving me the thyroid medication, and I would much rather not be taking anything. I have had none of the symptoms of hyperthyroidism and have felt much better since being on the medicine. I personally like that I have a doctor who is willing to treat based off of clinical symptoms and not tests alone.

Altsax:

I agree with your last statement to a point. You're right, most doctors do not treat symptoms unless there is a definitive disorder and that can be very problematic for some people who are suffering. There are a lot of Endo's who think 4.0 is a fine and dandy TSH and many people can feel horrible at that level. I do like an Endo who will listen to the patient and try to help them find a good spot. I see what my daughter goes through and I also have a friend who had thyroid cancer and has no thyroid. Both of them have major symptoms even when TSH is in the normal range and their doctors don't believe them. They feel better at a very specific number in the acceptable range. Getting there is the problem. However, you are not seeing an MD who specializes in thyroid disorders. Most GP's won't touch it. They refer because they are not qualified.

Your symptoms are very wide range and could indicate a number of disorders. It's impossible to say one way or another what you have going on. I'd maybe start with an Endo and maybe a Rheumatologist. The only way to know is to have some specific tests done.

I've been where you are and it's amazing sometimes how long it takes to find out what the actual problem is. A few years ago, I started to have RLS. I had been seeing a neurologist because I had small fiber neuropathy due to Lupus. He told me the RLS was related to the neuropathy. Anyway, for 2 years I couldn't sleep. Maybe got 3 or 4 hours of sleep a night and had to get up early for work. I begged for Ambien or something, anything to help me sleep. No luck. Then one day I asked for some blood work I had on a list and one of the things was ferritin. It came back low. I searched symptoms of low ferritin and RLS was on the list. I started to take iron and 2 weeks later, the RLS was gone. Gone! As long as I take it periodically now, it's under control.

Anyway, it's easy to lump symptoms together and think it's one problem, but sometimes they are separate and it takes time to find out the real culprit.