Fibro and Fatigue Center visit

[Reggie]

Well, I just missed a call from Citibank and I suspect it was their overactive fraud unit wondering if I really just charged $2300! I'm dazed and wondering too.

The doctor I saw seemed really bright and knowledgeable. She immediately focussed on thyroid problems. She pointed out the dark pigment on the back of my fingers, the swollen tongue with teeth imprints on it and the white coating, the cold toes, dry skin, missing eyebrows. She didn't blink at prescribing thyroid (T3 and T4 from a compounding pharmacy) even before doing tests. She absolutely believes the thyroid ranges for normal are totally bogus. She says they were created from testing healthy 20 year old males and have nothing to do with older people's needs.

She was unimpressed by the internet saliva tests however, and is waiting for her own to prescribe cortisol.

I learned a new one. My testosterone tests very high, above normal. She was also unimpressed by that. There is apparently testosterone and free testosterone, and she predicts my free will test very low. She was not happy with my muscle tone.

She ordered a bunch of blood tests. There's another opportunity for me to mail my stool cross country, this time for a yeast test.

The only downside is that it took from 11 to 2:30 and I was fasting. It was long and exhausting. I declined the 2 hour IVs with vitamins and supplements but got a shot with B12 and other stuff.

It was expensive, but I think we might be on to something here.

[mle_ii]

Well, I just missed a call from Citibank and I suspect it was their overactive fraud unit wondering if I really just charged $2300! I'm dazed and wondering too.

Yikes!

The doctor I saw seemed really bright and knowledgeable. She immediately focussed on thyroid problems. She pointed out the dark pigment on the back of my fingers, the swollen tongue with teeth imprints on it and the white coating, the cold toes, dry skin, missing eyebrows. She didn't blink at prescribing thyroid (T3 and T4 from a compounding pharmacy) even before doing tests. She absolutely believes the thyroid ranges for normal are totally bogus. She says they were created from testing healthy 20 year old males and have nothing to do with older people's needs.

Ok, not sure I see dark pigment on the back of my fingers, but I'm not really sure what to look for here, I do notice that the top part of my finger is darker than the lower.
Wow, never noticed that before, I do have teeth imprints on my tounge and I've never thought anything of the white coating.
Got cold fingers for sure, not sure about my toes.
Got dry skin, though I can't seem to keep hydrated as I'm constantly peeing.
I denfinitly don't have missing eyebrows.
I'm thinking that the thyroid ranges are bogus as well.

She was unimpressed by the internet saliva tests however, and is waiting for her own to prescribe cortisol.

Interesting, I wonder why. Seems like it'd be better than blood tests. My cortisol levels were within range (though a bit high) for morning levels. Though I susupect that this might not mean much, the lady was struggling to get the needle in to draw blood and perhaps by then my cortisol levels shot up.

I'm curious, has anyone else noticed problems with folks drawing blood? I never had this problem growing up, seems like the last few years they have a hard time getting the needle into my veins, and then when they do they say that it collapses. Strange!

I learned a new one. My testosterone tests very high, above normal. She was also unimpressed by that. There is apparently testosterone and free testosterone, and she predicts my free will test very low. She was not happy with my muscle tone.

Agree with her here, my testosterone total is high, my free is low. If it's all bound up it isn't doing anything. Hell, I'm not happy with my muscle tone. LOL

She ordered a bunch of blood tests. There's another opportunity for me to mail my stool cross country, this time for a yeast test.

Let us know when it's flying overhead, I'll be sure to duck and cover. ;D

The only downside is that it took from 11 to 2:30 and I was fasting. It was long and exhausting. I declined the 2 hour IVs with vitamins and supplements but got a shot with B12 and other stuff.

It was expensive, but I think we might be on to something here.

Whew, that's a long time to fast. And given the charges thus far I'd be hesitant to get more done as well. I really do how that they're on to something for you as well.

[starfire]

[quote
I'm curious, has anyone else noticed problems with folks drawing blood? I never had this problem growing up, seems like the last few years they have a hard time getting the needle into my veins, and then when they do they say that it collapses. Strange!
[/quote]

They used to have no problems with mine either but now I seem to be down to just 1 that they can easily access. Bothersome isn't it.

Love, Shirley

[tex]

Hmmmmmmmmmm. I'm in the same boat with the blood vessel issue. Used to never have a problem, but when I was "going through the clinic", about 7 years ago, with my "uncontrollable diarrhea" issue, I noticed that most of the nurses were having problems drawing my blood, and one, finally had to give up.

A few hours before my surgery, which was almost a year and a half ago, now, an ER nurse finally had to give up on trying to implant an IV needle after trying diligently for about 15 minutes. The next nurse, though, really knew her stuff, and didn't have any trouble at all.

While in recovery, the IV monitor alarm kept going off, so I finally persuaded them to move the needle to a location less likely to trigger the alarm, and again, the nurse had a lot of trouble making the connection with the vein.

So what are you suggesting, Mike - that MC causes smaller, or more difficult to locate blood vessels? By the way, I second you on the "Yikes!" response. and to boot.

Tex

P S Fortunately, Dallas is north of me, so I don't have to worry about the flyover. LOL.

[MaggieRedwings]

I am in on that YIKES bill and more than likely - probably 99% chance - no insurance coverage for me.

Have always had a hard time on blood draws so now I know to request a pediatric needle and they seem to have no problem. Much smaller so it does take longer for the draw.

Love, Maggie

[mle_ii]

So what are you suggesting, Mike - that MC causes smaller, or more difficult to locate blood vessels?

Not suggesting anything, just found it a curiousity. Though I have read that those with depleted glutathione are more likely to have low blood pressure, and low blood volume. Or perhaps I'm just confusing it with CFS.

I'm further curious, when they take blood is it from the veins moving towards the heart or away from the heart? I'm guessing towards, which would by distolic right? And if so those with low glutathione levels and CFS also have problems with the distolic blood going back into the heart. Releates to other issues as well, like the standing and getting dizzy, standing and having bp go down or hr go up. The heart has difficulty getting the blood back to the heart. So again, which blood vessels is blood taken from? Guess I'll go wikipedia it. :)

Mike

[Mars]

I'm in the same boat with needles too. The veins either collapse or they roll. When getting shots in my upper arm, comments are made that my skin is like leather and the needle don't want to go in!

Mars

[mle_ii]

Ok, it appears I was partially right on some of my info. It is in the vein, so that means in the blood vessle going back to the heart. That low blood volume can cause a vessle to collapse, not sure about roll as this happens to me as well.

The diastolic pressure has to do with the pressure of the heart at rest. When the heart fills?

[mle_ii]

Oh and here's another related problem, sorry to be off topic reggie, but I end up having to go back a lot after a blood draw for some reason or another. Guessing that my blood is more fragile and needs to be tested soon after drawing. I think they said something about my blood tending to lyse???

[Reggie]

I assumed the blood draw problem was either because I'm getting old - or because all the people doing the draw are getting relatively younger

The problem the doctor has with the saliva tests was that she was unfamiliar with the units they use, and the ranges didn't make sense to her right off.

Most of the money was for more blood work. They took about 30 vials from three spots (lucky we found that many that work.) My insurance won't cover it either. I'm just tired of being sick.

[Reggie]

I went back for my follow up visit to the Fibro and Fatigue Center. My test results were mostly good. My immune system is fine, so I probably don't have true Chronic Fatigue Syndrome. My heart, blood and organs are fine.

The doctor predicted testosterone(T) problems, and they were there. Not enough free T, too much estradiol (estrogen) She gave me a T shot.

I'm now the proud owner of scripts for Cortef and Armour. Bobh, you have another convert. My cortisol is indeed low on her blood tests, confirming the saliva tests, disproving my stodgy old HMO tests. I don't have Hashimoto's, she did both tests for it. What I do have is too much reverse T3.

OK, ladies, the rest is guy stuff, be forewarned.

This doctor is of the opinion that T is much like thyroid - totally undertreated. The so called normal ranges are way too wide. Men should be getting hormone replacement therapy based on symptoms instead of lab work. There's simply nothing dangerous about T shots. Young men have high T, they don't get much prostate cancer. Old men have low T, they do. Duh. As many as half of middle aged men could benefit from extra T. It helps with pot bellies, fuzzy thinking, hair, muscle tone, and oh yeah, sex. She's convinced that the big pharmas are trying to suppress this so men will pay for more viagra.

From what I've learned in the last couple days, it's just mind boggling that last November my urologist could have looked at me and seen my testosterone test that was so high it was off the chart and not spotted a problem. He just winked and said I was a lucky guy. He didn't ask what my interest in sex was like and how it had changed. He just looked at the test results.

One of my favorite finds is this guy:
http://forum.mesomorphosis.com/mens-hea ... =DIM+works

He has ulcerative colitis and says it only flairs now when his T and estradiol get out of balance - something that's controlled with a supplement, DIM. Which is somewhat reminiscent of the discussion going on about pregnancy hormones, eh?

[mle_ii]

Reggie,

So what is your drs range for Testosterone levels for men? I know my total is high within range, but my free is low within range. The free is the one that's actually being put to use.

FWIW, even though I'm pretty thin, I seem to have a belly, fuzzy thinking (yup), hair (this one I'm not lacking in), muscle tone (have a hard time gaining any thing muscle wise) and sex (well I won't go there).

Oh and one site has my estradiol higher than it should be for a male my age, but the lab says I'm within range, but at the high end.

So in the end given that she's thinking it's not CFS then what does she think is going on? What explains the low test and high estradiol? This shouldn't be happening as far as I know.

I don't think I have CFS anymore either. I'm leaning towards bacterial overgrowth, but will find out more this Wednesday. Took the test last week and it made me feel like crap, that and the first basal gas reading was high and almost pure methane. And it was twice as much methane as the last time I tested for this. I really should have persued this given what I had found back then. Oh well.

Thanks,
Mike

[bobh]

I'm now the proud owner of scripts for Cortef and Armour. Bobh, you have another convert.

Coolness. I have been buried at work - just checking back. This is interesting, and that your blood labs showed a cortisol issue. Your Dr must be looking "within" the range, as you have to be almost dead to have low cortisol show up on a blood lab.

I may be following your lead on the testosterone - mine showed low (I am 51 years old) but I am holding off until the adrenal and thyroid levels are handled, as I have heard that sometimes the other stuff improves after that.

BTW, we have been doing a lot of study on the "other" adrenal hormone that is often low when cortisol is low. Aldosterone maintains blood pressure by retaining sodium. When it is low, excessive sodium spills into the bladder (medical term is "salt wasting"). Water follows sodium, so there is excessive urination.

this leads to dehydration, and the body struggles to maintain proper sodium-potassium balance in the blood. blood labs often reads normal sodium-potassium (mine did) but the Aldosterone can be low (mine was) and the symptoms are all the stuff with electrolyte imbalance at the cellular level, fatigue, low blood pressure upon standing, sensitivity to bright light, pupils unable to stay constricted, etc.

You can learn about it here, on Aldosterone, and there are a lot of links to follow up (mentioned in the thread). http://www.stopthethyroidmadness.com/co ... php?t=8244

[Reggie]

My total testosterone (T) was 850 in November, totally unbelievable but I didn't know as much back then.

My total T now is 258. The range for this test was 250-1100. My doc would rather see 700-1000. My HMO is quite happy with 220-800.

My free T is 27.1, range 35-155, but my doc wants 140-210. My Sex Hormone Binding Globulin is a little high, and it tends to suck up the free T and make it not useful.

After the research I've been doing on T, I think my new doc is perhaps not used to treating guys. Very few, even the Amer. Assoc of Endos, recommend just a monthly shot. Most say 7, 10, or 14 days and smaller doses. I've found a naturopath that takes my insurance and does 'anti-aging' medicine, which includes hormone balancing. I guess I'm officially 'doctor shopping' now to get what I want.

The T research has about made my head explode. Learning about LC, then thyroid and cortisol was too much. Then my new doc called and said I'd failed my stool test for yeast. I briefly stopped my here to look for sympathy and found all of you talking about it. I've been hiding under the bed for the last few days. I just can't face more research.



Hey, my bowels are OK, what am I complaining about?

[Reggie]

Bobh, I've seen that thread on stopthemadness. I had NO aldesterone last July and the docs weren't even interested. It's back up now, but what a mystery.

After seeing my testosterone go from 850 to 250 in 4 months, my doctor finally broke down and referred me to an endocrinologist. I ran across a rare disorder that involves an autoimmune swelling of the pituitary. I've forgotten the name, but it included 'lymphocytic', which sure gets one's attention.