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12/31/2010 12:54 PM

Misdiagnosed, addiction, and years of suffering...

Posts: 35

Hi everyone, I have been reading through some discussions in a few topics, posting in some but mostly just reading, and I just wanted to take a moment to share my experience. As with so many others, there are still a lot of questions and unresolved matters, so I thought if anyone has had something similar happen to them and could offer some advice, I would greatly appreciate it!!!

Most of this began in 2004, with several issues lasting my entire life. Right now (Dec. 31st 2010) I am 30 yrs, 10 months, and 2 days old, male, married for three months with no children. I am a mental health professional currently working teadius temp jobs without insurance (maybe its the economy, but even with years of experience and a Masters, I haven't been able to find work in my field since July).

For several years I was experiencing seemingly unrelated symptoms my doctor couldn't figure out. My biggest complaint was constant muscle aches and pains with fatigue-no matter how much sleep I had, I was always tired. He would send me for bloodwork, but at the time I had no idea what, exactly, he was testing me for. When (apparently) my tests didn't reveal anything, he diagnosed me with fibromyalgia.

After getting two additional second opinions (all agreeing with the diagnosis), I began seeing a "specialist" who, unfortunately, started me on pain medication. Because of gradual increase in tolerance, over time he began prescribing me morphine (!)

A few months later, I decided that enough was enough and I would rather be in pain than be an addict. The side effects were taking a toll on virtually every aspect of my life, the constant stress and worry about having enough, the expense of seeing the "specialist" and the medication (without insurance), and the huge social stigma associated with this type of medication...I just had enough.

When I was (finally) finished with that "specialist" and his method of treatment, I had my new doctor (we had moved) run a more thorough blood test to see if anything was overlooked. Turns out my thyroid was clearly underactive! He started me on levothyroxine 50mcg and several weeks later I noticed a substantial reduction in the severity and frequency of the pain I'd been experiencing!!! Years, and thousands of dollars, wasted when a simple blood test would've revealed a very treatable condition!

The blood tests also revealed a very, very low level of testosterone. The first test, a little over a year ago, showed a level of just 59 (with the minimal normal level being around 250)! Nobody seemed to know if this was caused by years of opiate use or something else. My cholesterol was also VERY high-trigs were so high they couldn't get an LDL reading! Again, at the time I was around 180lbs, 5'9, 29yrs and moderately active. I rarely ate "junk" (like fast food), occasionally (once or twice a month) ate red meat, and took every vitamin and mineral supplement imaginable every day. I have had high cholesterol my entire life. I have never been prescribed cholesterol lowering medication, but I began taking otc niacin several months ago but stopped due to the flushing, itching, etc.

One of my old doctors wrote me a prescription for Testim gel and, when I actually had insurance, I ordered a three month supply. I ran out in October.

My most recent blood tests (12/7/10) show the following (abnormal or relevant) results:

Glucose, Serum: 101 (high)

Creatine, Serum: .70 (low)

Cholesterol, Total: 292 (high)

Triglycerides: 238 (high)

HDL: 41

VLDL: 48 (high)

LDL: 203 (high)

LDL/HDL Ratio: 5.0 (high)

Testosterone, Serum: 264 (low)

TSH: 2.68

Vitamin D, 25-Hydroxy: 27.8 (low)

Vitamin B12: 1393 (high)

I don't know if any of these are related, or caused, by one issue. I've read that an underactive thyroid can cause high cholesterol and low testosterone, but the research seems to be limited. My glucose level was a little high, too, which I've NEVER had a problem with before. My TSH right now is within the normal range, I think, because I've been taking synthetic thyroid hormones (levothy) for several months. I've increased my daily supplement of Vit D from 2000iu to 8000iu and lowered my B12 to 250mgs. At the time of this test, I had stopped using Testim for a little over a month.

I am currently taking the following prescription medications:

Cymbalta 60ms/day (for a history of depression and anxiety, which began about 18 years ago)

levothyroxine 50mcgs/day

modafinil (Provigil) 200mgs/day (for constant daily fatigue)

suboxone (weaning off years of opiate use-its a VERY slow process!)- 4mgs/day (down from 24mgs six months ago!)

I haven't been to my doctor since this recent blood test, so he may decide to prescribe something new. As I've learned over the years, often we have to be our own advocate and research our health concerns independently.

What I am unsure of at this point is if I should ask my doctor for specific medications, or changes in my current medication, or do nothing. This upcoming year (2011) my wife and I are planning to try to have a baby. I want to not only be in the best possible health at the time, but physically be able to conceive.

If anyone has any suggestions or advice, PLEASE let me know!!!

Thank you so very much for taking the time to read my post-I, and my family, sincerely appreciate it!

God bless,

Matt and Stephanie


01/03/2011 12:44 AM
Posts: 1918
Senior Member

I am believeing your triglicerides and cholesterol need attn. that is heart trouble waiting to happen, but i think it sounds like you are on a good regimine, so you are doing all the right things , try to think positively , and dont concentrate too hard on the symptomology of the fibro, and the chronic fatigue, i know it's hard but you have so much to be happy for a a baby wow! you will both be blessed, just hang around here there are wonderful people here and you will get answers for your questions, and we can share our experiance with this mind blowing condition, its not easy to concentrate on something that virtually runs our life i know but there is room for happiness and i can wish you that, and all you answers are coming, much love toyou and yours, Debi

01/03/2011 02:16 PM
Posts: 35

Thank you very much for your concern! It IS very frustrating living with a condition few understand and know how to treat, but to give up really isn't even an option. One must always remain hopeful and committed to living a full and satisfying life regardless of setbacks beyond personal control Smile

01/09/2011 12:12 AM
Posts: 2012
Senior Member


I know some of those readings can be related to specific conditions. The low D ties in to thyroid. I would be concerned if say the glucose and creatinine were far from normal. I'm not a medical professional so I don't know how far away from ideal your blood tests results were.

Also should mention, I believe hypothyroid can affect sperm counts so make sure you keep a close watch of that.

I would just come right out and tell the doc your concerns and he should be able to tell you if anything right now is going to possibly be a problem for conception.

Good luck and we want to hear baby news soon......

hugs, heater

02/25/2011 11:01 AM
Posts: 4722
VIP Member
I'm an Advocate

Hey Matt,

Right off the bat, you sound like you could be a Lyme patient. Lyme disease can cause so many off the wall symptoms that don't seem to relate to anything, but the things that really make the think "uh-oh" is that you're fit and in shape, but have all these weird things going on, AND that all your bloodwork is skewed the way many Lyme patients see it.

So many Lyme patients have high glucose, low testosterone, low thyroid (and don't blame the blood tests-they were probably done and are highly inaccurate!), crappy cholesterol despite being in shape, kidney problems, and low vitamin D. The only thing that seems out of place with you is that most also have low vitamin B. You look like a classic case, and your symptoms sound very familiar.

Most Lyme patients are misdiagnosed as having FMS, CFS, lupus, MS, and a number of other conditions. If you're interested, you should take a look at the Lyme links I've posted here on the forum, and I'd also recommend you take a look at the Lyme forum and look at the "facts" section there. It's mind-blowing, and pretty insane.

Most people do not know they've been bitten by a tick, and most doctors will tell you that there's no Lyme in their state. That's whack. Look at the "facts" section in the Lyme forum for the truth. It's out there, but people don't want us to know.

Hope that helps you some in your search for answers. Have you learned anything else since your last post?


jen Smile


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