Always tired too...

sparker said...
Yeah, I hear ya. I could write a book on how disgusted I am with physicians and the state of insurance. I'm currently fighting Medica right now with the assistance of our State Commerce Department because I was told I would be covered at the Mayo for a series of tests and analysis... and then they later decided they wouldn't cover it, to the cost of $29,000 that I paid out of my pocket. (End of venting now)


Every doctor I've met is not inclined to "learn" something from a patient. I handed my ZRT test results to my endo and while he did glance at them, I got the impression he tossed them in the trash after he left the room.



I'm thinking like Orion that I'm going to need to set up another appointment with a different endo just to cover my bases. I think sometimes I'm too nice.... when the endo said we'll see you in a month, I should have put up a fuss and said "Hell no.. " but then I'm worried that they'll get pissed and then I'll get worse treatment.



I think it's a problem with this disease we have.. where we appear more or less fine (on the days we have the energy to get up and go) but really inside we're desperate for anything.



Inside, I feel like I'll never get better. I don't even think about the future much in terms of plans, etc. It sure would be nice if a single physician would have enough empathy to say "We'll figure this out, don't worry! Here's what we'll do.. and if that's not it, I won't give up on you."



I'm sorry Tru that you feel pain, which I thankfully don't, but I think we're all in the same boat of crippling fatigue and lack of energy. I'm rambling now I realize, but I don't have anyone around me that understands so I need to spew my thoughts once in a while.

Wait a minute...your doc is not treating you?! You let your doc keep your results? My doc copied mines. Always let them see an original and let them make the copy.

For me, those hours or days when I felt better family took it as what I was going through was over and they expected me to do certain things that I knew would depress, cause me to be anxious, or exhaust me. I had trouble explaining my illness to them, because I was still trying to figure it out myself. No one in my family wants to read any of my books...yet they keep asking me the same questions over and over about my illness. It really really upsets me.

I feel the same...but my first endo didn't even want to see me anymore...she told me to go see a physiatrists. She made me so mad!

Also, recently I told my aunt about my high toxin level and she says, "Well, I don't think it's that, I think that it's you adrenals." I had to explain that a high bis muth toxin level causes adrenal fatigue...and she said nothing.

My aunt also tried to prevent me from ordering the ZRT tests, so did my mom. Without those tests I swear I would have had a nervous breakdown by now. Before, I informed her about adrenal fatigue she was the one the encouraged the doc to give me anti-D's...the same anti-D's that caused my abdominal pain for 4 months on top of my fatigue. I believe that those anti-D's had bis muth in it...and since my body already had too much bis muth it caused me to have abdominal pain. Now I understand why that detox relieved my ab pain after 4 months of going to docs that didn't even help me.

When I informed my aunt about adrenal fatigue she said that it was normal blah, blah, blah. She told me that about everything that I told her about my symptoms...I even told her that my breast would enlarge from time to time...she said that was normal too. If I would have listened to family and docs I would me no where...and that's the truth.

Today, I learned that low progestorne can contribute to adrenal fatigue.

Also, I think that have the thyroid test too caused this doc to treat me, because he really did not want to treat my adrenals, but he was will the treat my thyroid. I had to explain that since my cortisol level was low I won't tolerate thyroid hormones...and he agreed. I realize that docs don't care about adrenals.

I feel ya dude. I went through the same thing with one of my "Endo Attempts". Don't feel down, they're not all like that. I too have open access through my insurance. Keep checking around. You'll find one.

You're right about the spouse thing. It nice sometimes to let out my fury on her (only verbal, so please don't think I beat my Wife ). I don't know what I would do without her being by my side.

If you ever want to chat via email, shoot me one. I'm always online and have a constant link open for my email.

Take care. I pray that help is on the way for both of us. Keep looking for another endo. I would set up Two or Three different ones, just incase. Remember, you're paying for this.

-O-

Sparker...

I know it's easy for me to say, and hard for you to do, but you have to keep your head up. There are times when hope seems far from my reach too. That the light at the end of this tunnel is getting furher away, no closer.

From the sounds of your visit with him, I think you DEFINITELY need a second opinion. I have 2 more doctors appts for this same reason. You might also want to try doing some research on your doctors in the area. You google them with something like "rate doctor" I found info on the doctor I'm with now. Patients in the past might have give your next doctor great ratings.

Not all doctors are like this, you just need to find the one that cars. Keep looking dude!!!!




However, I'm sure my test results will come back the same as yours. From what I've read, this is normal. Cortisol cannot be found in the blood as accurately as it can saliva. I think we both need to find a doctors who is willing to treat symptoms, not run every test in the book.

I don't understand it. Why did our saliva tests show low Cortisol and a drop in their levels through the day.. while the blood tests showed a normal level.

I'd like to ask ZRT labs how that can be.. it would then mean the saliva test would be meaningless or the blood test is innaccurate. But since physicians seem to believe only blood tests... then what the hell then.

Man I'm pissed... I'm over here swearing out loud at myself.

sparker said...
I don't understand it. Why did our saliva tests show low Cortisol and a drop in their levels through the day.. while the blood tests showed a normal level.

I'd like to ask ZRT labs how that can be.. it would then mean the saliva test would be meaningless or the blood test is innaccurate. But since physicians seem to believe only blood tests... then what the hell then.

Man I'm pissed... I'm over here swearing out loud at myself.

Can you post your results for me?

There should have been a number between 5-25.

Your T3 level is barely in range, and TSH looks low.  Your Cortisol does look high however.  I'm sure you're probably tired of reading books as I am, but check out "From fatigue to fantastic".  It's only $13, but it has a TON of great info in there.  One of the things I was reading was that even if your tests come back normal or just slightly below normal, and patient can still feel horrible. 

Odd.....

I would still get a second opinion.

Did he want you come back for further testing/consultation?

Call his office and see if he's willing to do a 24 hour urine test.

The problem with the one time draw is that it only takes that time stamp of cortisol as that moment.  You might have had a high point.  This is what I've been reading on other forums as well as books. 

Don't give up!  Definitely find someone who is willing to run some further testing.

I was surprised by your cortisol number.  I thought would have been lower like mine (8)

 

sparker said...
Well, went back to the endo this morning for my followup, and got pretty much what I expected. He started going through the test results one by one and said "this is normal, this is normal". I stopped him at the second page and asked if he was going to go through all the pages and say they're normal, then tell me he had no further ideas.

To which he said, yes. I asked him on the T3 and TSH levels, and he said they were fine. He said had the Cortisol level been low or close to being low, he'd have ordered further tests or a ACTH test, but as it was being so high - that he'd not test any further.

The only item he noted was that my Vitamin D levels were at 33 and that they should normally be around 66, so he told me I should start taking supplements of at least 1,000 IU/daily. He also prescribed me Lunesta to help me sleep through the night and see if that helps.

So... kinda no real solution there.

On another note, my cousin suffered for a while from some similar hormonal problems - though not identical to my issues. She recommended me to see her holistic type doctor, so I'm going to see him.

His website is kinda encouraging as it talks directly about chronic fatigue and how doctors test and say everything is fine when you don't feel fine. The clinic is http://www.dakotamc.com/

Man... I'm sorry to hear this.

This is just sad.  A patient is suffering and instead of giving them a trial steriod (proven in studies to work) they proscribe a non-narcotic sleep aid. 

I hope the holistic doctor works out for you man.  I might be going that route too, if these next 2 don't pay off for me.  I hope not, I don't have the money to foot the bill.

sparker said...
I hear ya, I'll likely have to pay the $250 out of pocket for this holistic guy. I'm already starting to hurt for cash as I'm not getting my full-time hours in at work.

Interesting enough though, my co-pay for the endo appointment and all the tests cost me nearly a $250 as well, so with my insurance I'm still paying a lot.

I see the holistic guy next Wednesday, January 10th at 9:00 AM.

On another note, I've been looking at the idea of having my old fillings removed and having new ones put in. Of my 8 molar teeth, 7 are filled with that old style silver filling which can potentially lead to health issues. Not sure if anyone else has ever done this and had any results.

Wooooo... hold on here... you have 7 fillings?  Do you know if they're mercury? 

Man... I gotta tell you... I would get those ripped out before doing anything else.  Mercury poisoning can do just about everything we're going through. 

I would look into this RIGHT NOW.

Yeah... 7 fillings all in the molars. They're all old since I had them all before like 1980. I'm gonna have to imagine they're mercury since they're old and they're the silver based fillings.

The article is interesting.... I just did some digging and apparently there's no real good way of measuring mercury in the body as blood, hair, saliva, urine tests all have issues measuring.

I'm seeing my dentist tomorrow actually, so I'm going to ask what type of fillings they are and how much they charge to swap out fillings per tooth.

I'd be curious if anyone else here has experienced or looked into this further. Do you have many fillings Orion?

Yeah same here... although I've had some scrapes here and there, I've always been in excellent health and full of energy. Being sick is totally unlike how I used to be, which makes it more difficult I imagine for all my friends to understand me not going out and doing things.

.. and again, definitely stress related I'm sure.

LOL... so it's not just doctors who are dumb either ..... huh!

That is expensive... It's a gamble.  On one hand, you could feel better, and it would be worth the money.  On the other, you could feel the same and kick yourself over this.  Hard decision.

sparker said...
Well, my cousin (who has gone to this homeopathic doctor) said she was experiencing some of the same symptoms that I am.

She's feeling much better now, although she said it took her a good year to recover.

The good news is that this doctor did a bunch of tests and ended up giving her Cortisol and a few other things.. she didn't go into details on the rest.

The bad news is that he's not covered by insurance (already noted above) and that in total it cost her a few thousand dollars.

Now.. if I knew this was going to cure me, I'd get the money somehow and pay $10,000 right now. But man... the continual spending of a lot of money without getting anywhere is taking a toll financially on me.

I'd be interested in just getting the Cortisol to see what happens.

I feel you.  I really do.

The ND probably gave her a form of cortisol, or something like that.  ND's don't prescribe medicine (hence the holistic approch).  I'm not sure what she was put on.  Some places do a compound cortisone, but I don't know how effective it is... But hey.. if it works, it works. 

Ahhh... so he has an MD.

That's like the Doctor I was talking about going to see, but he moved his practice to Hawaii. 

Yeah, that should do you some good.  Most of them, have a good foundation on CFS and Fibro too.