Any thoughts or suggestions?

[fritzandcole]

I have been followed for several years for "lupus like" symptoms (chronic arthritis, raynauds, thinning hair, headaches, constant fatigue) and have had a battery of blood tests.  Recently I had been diagnosed with gastritis by a GI doctor, whom I was referred to after my gynecologist couldn't find the cause for my lower abdominal pain. My GI doctor also mailed me a letter stating that my blood work showed elevated ESR (sedrate) and ferritin. After I learned about the ferritin, my family shared with me that both of my grandfathers had liver issues (hemochromatosis). Upon the latest blood tests, and new information about my family, I obtained a copy of all my lab results...which have varied over the years. On some tests I would show positive, then other times negative, then positive again for ANA, Anti-SM, Anti-Rho. I also had times when my CPK were sky high (4400), elevated SGPT/ALT, elevated SGOT/AST and aldosterone.  I've consistently tested low for RBC, low HCT, but high MCH.  I frequently test high for sedrate (ESR), and MONO, ABS.
Any thoughts on what this could be, or what other tests I should request upon my next visit.
Thanks in advance for your help!

[Jody515]

I have autoimmune hepatitis & I can tell you that the only way it was discovered was a biopsy. I also had arithritis & fatigue.  I have a family history with Lupus, Crohns, NASH, & rhumetoid arthritis, all coming from maternal side of family of which 3 of the diseases belong to 2 brothers also.  Suggest to your doctor if this could be an issue for you, important if it is & good luck to you.

[jaksmom03]

PLEASE READ ABOUT LYMES DISEASE! ALL OF YOUR SYMPS ARE LYME YOU NEED AN LLMD GO TO HEALINGWELL (DOT) COM AND POST UNDER LYME AND SEE WHAT YOU GET BACK, lyme is dx as lupus, ms, als, cfs, fibromyalga, and it your head! even if you had a test that was neg that doesnt mean anything ! 60% of people that have lyme test neg and you continue to suffer! dont read CDC info on lyme go to youtube and google ILADS for info and lymenet. are all good please read this information it could save your life!

[fritzandcole]

I posted a comment to myown yesterday by mistake...it was meant for you, I believe.  I think it should come to you just the same. If not, just check the forum and it should be posted either under me, or under myown.

Good luck with your tests and your Dad. I hope he's going to be alright.

Fritzandcole.

[fritzandcole]

I can only imagine how scary that is for you and for your dad. Good luck with your tests and your dad.

For my diagnosis, my doctor does not feel that it is hemochromotosis, but did not order any more blood tests along that line. He said that he's confident with the blood tests we've already done and the liver tests he's already performed. The weird thing is though, I just had a CT scan for my lower pelvic/abdominal pain that my GI ordered. My primary sent me a note stating that there were liver and spleen cysts that were benign.  I haven't heard anything else as to what might have caused it, nor has he ordered any other tests. I'm just waiting for my follow up with my GI to see what he has to say about all of it. (And it may be time to find a new primary because he seems very dismissive to any symptoms or history that I present.)

Any ways, good luck with everything. If it does in fact turn out to be hemochromotosis, it is very easily treated if caught early. Good luck!

[rose227]

Me and you are kinda in the same boat.I also have had lupus symptoms for about 15 years now,with the same blood work that you do,i even have the butterfly rash on my face,blood and protein in my urine,elevated ANA and here is the creepy part about six months ago my dad was diagnosed with hemochromatosis and he is in really bad shape,so i was tested for it about a week ago,hopefully i will get some answers also,im tired of having a diseas with no name.good luck to you.     rose

[fritzandcole]

Thank you so much for the link!

[chigirl29]

Your levels could have fluctuated, but you may have hemochromatosis--you will experience symptoms like yours if you do.

Here is a very good link--diagnostic info and treatment info.

http://digestive.niddk.nih.gov/ddiseases/pubs/hemochromatosis/index.htm

[Myown]

colonoscopy and an endoscopy
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I had a colonoscopy too, but UNLESS they are looking for parasites, they will not see them. They never saw parasites with my colonoscopy and I complained to many doctors that I thought I had them and no one would listen. One doc sent a stool sample out and it came back negative, but I insisted that I was right. I had mucous in my stool and little bit of blood which wound of being internal hemmies (that can be a sign of parasites) and at times I would see specks in my stool. Most people wouldn't even see it in their stool, but I always checked ever since I saw the blood.

So anyhow the Parasitologist did find them and now I have to be treated for that. Yuk.

Wish you the best!

[fritzandcole]

I can believe that no one tested me. Most doctors like to look for the obvious and if it doesn't reveal anything, as you know, they act like you are nuts. I don't think anyone made the connection with the liver until my GI for some reason did a ferritin screening. Prior to this they kept looking at the kidney. I also didn't know, therefore they didn't know, that I had a family history of liver disease. So I think that they felt it was more in line with lupus, and therefore more likely the kidney.  But I just changed my primary and will be bringing my lab tests for the last 12 years, my new family history, and all my internet research and I will be asking him for very specific tests to look at autoimmune hepatitis, hemochromatosis, autoimmune gastritis, anemia of chronic disease and liver disease in general.  Hopefully I'll get some answers then.

Have to sign off for the night, my kids are getting a little restless.

All Best!

[Myown]

...just as long as I can finally treat whatever it is and start moving forward!

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Yes, i know how that feels. It's such a pain in the neck when these doctors can't figure out whats wrong. Thank God for google and lay-people.


Thats so unreal that no one tested you for hep c. If I would have listened to my doctor, I wouldn't know I had it cause that doc said "oh, slightly elevated, I don't think its anything."

If I was a toothless drug addict, she probably would have tested me. Most doctors haven't a clue about hepatitus C.

God forbid you have hepC, but IF you do make SURE that you go to a Hepatologist (liver specialist) cause these regular GI doctors THINK they can treat hep and they haven't a clue - or at least most of them don't. I have learned so much at the Hepattitus forum here at Med Help. Alot of very bright people there.

[fritzandcole]

I just had a colonoscopy and an endoscopy...so I think I'm safe in that area!  

Thanks again...take care

[Myown]

couldn't find the cause for my lower abdominal pain
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Also want to mention,,you should consider getting tested for parasites. So many ways to contract parasites, water, food, pets etc.

A stool sample WILL NOT always detect parasites. You MUST find a Parasitologist and get a scope. It doesn't hurt at all. Parasites are found (if a person has them)on the wall of the intestine and so not always will a stool test that is sent to the lab will detect them. A scope must be used instead.

When the doctor uses the scope he will scrape the wall of the intestine and then put it under a microscope to see if you have them.

Take care.

[fritzandcole]

Thanks for the input.  No, I haven't been tested for hepatitis. But I too had considered autoimmune hepatitis, but it is also worth looking into the other forms.

Don't worry about scaring me...I've been dealing with all of it for so long. I really am not so concerned with the actual diagnosis...just as long as I can finally treat whatever it is and start moving forward!

Thanks again.

[Myown]

Have they checked you for hepatitus? Not saying that you have it, but to play it safe, you should get tested for hepatitus C (and A and B also)

I have hepatitus C. Many doctors will see elevated liver enzymes and not check for Hep c because they think only druggies get hep c. But there are many ways to contract hepc
dentist, transfusion,manicure, tattoo. It is a blood to blood disease.

I googled when I saw my liver enzymes were slightly high and saw that hepatitus could cause this. My doctor didn't think anything of it because they were only slightly elevated.
I insisted on the test and it came back positive for hep c.

I'm sure there are many things that can make a persons enzymes elevate, so I don't want to scare you about hep c, but I wanted to mention it.

I have a slightly elevated ANA and none of the doctors can really give an answer because it is not high enough to be lupus or anything like that but at times weak ANA is seen with Hep c.

Hope you get answers from your doctors and I hope that you don't have hepatitus c.

Good luck.