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EndocrineWeb Community Advice

I really need help

From: LBeezie - 44 weeks 2 days ago

So, I have kind of a lengthy history here, with many facets. First, I've had multiple back surgeries and was on pain pills for about 6 years. I decided they were eating my brain, so I told my Dr I wanted nothing to do with them. I had a spinal stimulator installed and it's helping, so, with my Drs help, I started tapering my pain pills. I feel like crap and have been in bed for nearly two years with withdrawals and absolutely no energy. I also developed other symptoms. My Dr suggested that I join a CBT class at Kaiser and with that I'd see several Drs to figure out exactly what's wrong with me. This included a psychologist, physical therapist, pharmacist and any other dept I needed. The whole year before this, I thought all my symptoms were related to getting off my pills.
So, let me get to those. Besides severe fatigue, I noticed that my right foot was pretty much always cold. I now have a heating pad in my bed that I keep on 24/7. My right hamstring and the right half of my private area are numb. Not totally, but definitely numb. Because of these two symptoms, my Dr had me tested for peripheral arterial disease and neuropathy. I don't have either.
Then I started to overheat severly with any exertion. When this happens, my skin is very cold, I sweat profusely and get very shaky and irritable. This happens with the slightest of activity including showering, very light cleaning or even walking around a store. The only thing that gets it back under control is lying down while fanning myself, even though I'm freezing at the same time. My Dr then decided to test my thyroid and have me checked for MS. Both are all good.
I also developed flushing in my head, neck, ears and chest. With this new addition, my Dr tested blood and urine to see if I had either a carcinoid or pheochromocytoma tumor. Some of my levels were high, so I had to be tested again. This time I guess it was more in depth. My cortisol was also tested. This time my levels were borderline. I can't remember which ones though. So she consulted with an endocrinologist. They finally determined I was clear. My cortisol was also normal.
Finally, I'm in a constant state of tachycardia. I had an ultrasound and my heart looks all good. I'm now being referred to a cardiologist. My heart rate gets up to 180 at times, for no reason. We found this out because I wore a holter monitor for 3 days and I was also monitored for sleep apnea, which I have. (Sad face).
After all of this, so no definitive answers. My Drs say that I could just have a fast heart rate and that's just me. They also say that it could be my methadone. BTW, I'm on methadone now because during my CBT classes, my pharmacist said this will be easier to taper than my pills, and it is. I'm almost done, Yay! But I guess methadone, and pain pills, can cause all of these problems? I just want to feel better!
I have a couple questions... Does anyone else suffer with these symptoms and what was the cause? Also, if my results regarding carcinoid and pheochromocytoma tumors were borderline, could it be possible I still have one or the other, even though it was determined that I probably don't? Why are some of my levels elevated then?
I still have all of the symptoms I've described above, but feel slightly better because my Dr put me on vitamin B12 and vitamin D pills, but I still don't want to do crap most of the time. I'm really trying to be more active, but it's so hard! It takes everything I have just to shower. I have 2 boys and I need to be a mom for them! Oh, I'm 46, 5'9 and weigh 219 last time I checked. I've been losing weight and am hardly ever hungry anymore, which is weird. But I'm glad to lose because I need to. I also have lychen sclerosus, so that makes me worry about an autoimmune disease, but that would kind of make sense to me with everything going on. Anyways, that's about it, as if that's not enough lol.

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Have they checked you for Graves Disease? I would go back and request in depth Thyroid Panel (free T3, T4, TPO and ask for the test for the anti-bodies). That Tach may be from hyperthyroidism....

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Also I recommend when fmgermtting your thyroid levels checked be sure to have your doctor check your antibodies as well because it is not uncommon for your thyroid levels to come back normal and get your antibiotics come back negative and of course they will sum well your thyroid levels appear to be normal but your antibodies or not and then that opens the door for them to further test your thyroid and they will find that you have a thyroid disorder of some sort and my guess is you're probably hyperthyroid but by all means do make sure that you get your antibodies checked. Much love to you

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Also I recommend when fmgermtting your thyroid levels checked be sure to have your doctor check your antibodies as well because it is not uncommon for your thyroid levels to come back normal and get your antibiotics come back negative and of course they will sum well your thyroid levels appear to be normal but your antibodies or not and then that opens the door for them to further test your thyroid and they will find that you have a thyroid disorder of some sort and my guess is you're probably hyperthyroid but by all means do make sure that you get your antibodies checked. Much love to you

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i red your article and feel that what a brave person you are after all this injuries and problem you are looking so strong.that is the spirit.may god bless you.

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