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Lab work low hormone levels, mycoplasma and other questions.

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I recently had blood work done because I feel so much worse. I went to an ENT who felt my thyroid and he said, "this is a rather large thyroid. It's super thick." My TSH has always been semi low or in the low category but the other T4 and T3 are fine. Anyway, my DHEA came back low and I have mycoplasma...again. Or, it shows that I am making antibodies to mycoplasma.

Anyway, I know many of you understand much of this. Can you give me insight?

Is it wise to take DHEA? My adrenals are in the gutter, they are so low and I have zero reserves. Which, is why I am in bed or unable to sleep, I am thinking.

White blood cells are elevated. Is that bad or good? It means I am fighting something, I am pretty sure. For years, my white blood cells were so LOW. So low.

____________________________________________________________________________________
What is AST? Have no idea.

ACT high. Don't know what that is.

Okay, here goes:

AST 72 normal range is 10-30 HIGH
WBC 11.7 normal range is 3.8-10.8 HIGH
ACT 105 normal range is 6-29 HIGH
Carnitine Esters 3 normal range is 3.8-19 LOW

Mycoplasma HIGH
EBV HIGH

TSH .90 normal range is .40-4.50 in range but low
DHEA 15 normal range is 25-220 LOW


ABSOLUTE LYMPHOCYTES 503 Normal range 850-3900 LOW
____________________________________________________________________________________

Because I know my adrenals are shot...would it be wise to take DHEA? I would prefer the cream. I will speak to my doc, but also what are your experiences?

Also, this TSH...it's always low but within range. Why am I never able to do anything for the thyroid and why does almost every doc feel that it is big...meaning, my thyroid. I so think they are missing something as I have so many aunts who have thyroid's removed, burned out, etc.


Any thoughts or wisdom, I would appreciate. Thank you!


 

barbc56

Senior Member
Messages
3,657
It sounds like, if you haven't done this, ask your doctor what these tests results means. Are you being monitored since your T4 is in the lower range?

Thyroid disorders do run in families. My mother, maternal grandmother as well as two aunts have had Graves disease. I had a brief spell of hyperthyroidism which turned to hypo.

My suggestion and please take this in the context that I am not a medical professional and based on my experience, is to ask for a referal to an endocrinologist.

Hope things go well for you. Keep us posted!:)
Barb

ETA I know very little about CIVD, so don't know if/how thyroid is related but that info might make a difference as to what kind of doctor to see.
 
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Ema

Senior Member
Messages
4,729
Location
Midwest USA
Do you mean "ALT" for "ACT"?

An ACT test is a measure of coagulation but it's results are given in seconds...so that range isn't right.

But an ALT range is typically 10-40 and could easily be 6-29 based on whatever lab did the test).
 
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Misfit Toy

Senior Member
Messages
4,178
Location
USA
Do you mean "ALT" for "ACT"?

An ACT test is a measure of coagulation but it's results are given in seconds...so that range isn't right.

But an ALT range is typically 10-40 and could easily be 6-29 based on whatever lab did the test).

Hey Ema, I think I meant to say AST.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
It sounds like, if you haven't done this, ask your doctor what these tests results means. Are you being monitored since your T4 is in the lower range?

Thyroid disorders do run in families. My mother, maternal grandmother as well as two aunts have had Graves disease. I had a brief spell of hyperthyroidism which turned to hypo.

My suggestion and please take this in the context that I am not a medical professional and based on my experience, is to ask for a referal to an endocrinologist.

Hope things go well for you. Keep us posted!:)
Barb


2 of my Aunts had Graves disease. Yup. Will try and find an endocrinologist. They scare me because they have never helped me, but will try again.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I don't think I have osteo but not sure. I don't have anemia. I will look at neutrophils. They always used to be. The doc I go to specializes in CFS. He sees low neutrophils and never thinks anything of it. I do know that phase II of my liver is not working right. Not at all. Typical with CFS, I believe.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I think your TSH is low because of euthyroid sick syndrome. An endo might run a FT4 but would probably be low but in range. ESS is hard to fix with thyroid meds but it's worth having antibodies tested.

I wouldn't take DHEA with low cortisol. It often makes people feel worse. You might try pregnenolone which is one step higher on the chain. Lipid matrix tablets.

With CVID, I think I might consider a hematologist instead. I think maybe you should get your plasma and bone marrow checked out.

And someone (immuno?) who will get you on Valtrex for the EBV and Azith for the myco. Experts in myco will tell you at least 6 months on and then to pulse until immune system is fully functioning again as prophylaxis.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Hey @Ema why a Hematologist? I know many with CVID see them...I just wonder why.

Yikes, will have to look up euthyroid sick syndrome. I have had a whole antibody's against your thyroid, I think that's why I had and they always come back fine.

Yeah, right now it's really hard to know what to treat. Last month I had a horrible time with the IVIG and having another one on Monday. When I do too much with meds, I go down.

An antibiotic I can usually handle. Azith gives me horrible diarrhea, however. Knowing my CFS doc, he'll put me on doxychlor , or will want to...does zip. Won't do it.

I am seeing so many docs because of all of the complications and the never ending medical malfunction. Up next, a rheumy and back to the ENT and a sleep study next week. And...an endocrinologist. Need to find a good one.
 

heapsreal

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10,086
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australia (brisbane)
I would go after the infection first, adrenals may recover on their own some. Doxy could be ok, maybe need higher doses to start with eg 200mg twice a day and maybe later tapper dose down. Theres also minocycline, maybe clarithromycin which has a similar coverage as azithro, maybe no diarrhoea??
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hey @Ema why a Hematologist? I know many with CVID see them...I just wonder why.

Yikes, will have to look up euthyroid sick syndrome. I have had a whole antibody's against your thyroid, I think that's why I had and they always come back fine.

Yeah, right now it's really hard to know what to treat. Last month I had a horrible time with the IVIG and having another one on Monday. When I do too much with meds, I go down.

An antibiotic I can usually handle. Azith gives me horrible diarrhea, however. Knowing my CFS doc, he'll put me on doxychlor , or will want to...does zip. Won't do it.

I am seeing so many docs because of all of the complications and the never ending medical malfunction. Up next, a rheumy and back to the ENT and a sleep study next week. And...an endocrinologist. Need to find a good one.
ESS is what your body does to turn down your metabolism when you are filled with infection. It's mediated by cytokines and has nothing to do with the thyroid really. IVIG and go after the infections is the best way to fix it.

CVID goes along with problems in the blood and marrow where the antibodies are produced. There are some things to rule out as the cause of your low antibody levels that a hemo can do that may or may not prove to be important but should be evaluated given the propensities for more serious issues.

Endo would seriously be the last on my list. Any doc can run thyroid antibodies (both of them) including your CFS doc.

Roxithromycin is often tolerated better than Azith and has similar efficacy on myco. It's available online from reputable pharmacies. Macrolides seem to be most effective so I would see if you can find one you can tolerate if possible.

http://www.ncbi.nlm.nih.gov/m/pubmed/7758359/
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Clarithromycin increases cortisol clearance which is fine in those with solid adrenals but can precipitate adrenal crisis in those with weak function.

S boulardii can help mitigate diarrhea. Florastor seems to be the best.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Ok, will do. Thank you both. A few weeks ago I was on Valtrex due to so many fever blisters in my mouth. I started having horrible pain and I am wondering if it was die off. I stopped it. Neither doc I go to feels that Valtrex is needed or warranted. The CFS doc swears that there has not been enough evidence to support that it works. His direct quote, "Dr. Lerner says it helps, but there is no written study saying..this number of patients got better." Who knows.

I would try it. My immuno does not really believe EBV is any kind of issue. He is old school. He is not hip enough on CVID, honestly. He's very nice and calls me right away if I call, but he doesn't understand or think for example that CVID has anything to do with a rash or yeast. YES, it does.

I really wish I could find someone who really knew CVID and the full scope and not just the infection aspect, albeit that is huge.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Yes, there are a few; the doc's in Philadelphia are swamped with patients and they from what I hear, don't get back to you. You must go see them to talk to them. They rarely call back. Some do.

This guy, I had to teach him to run saline. I don't really mind that, but he is very black and white about CVID. It's infections, stomach issues and that's it.

I was recommended another doc, who I just found out about who is about an hour from me. I will go to him to feel him out. I've been told he is very good. I found a PID support group here!! Going to a meeting soon and hope to learn more. So far, the few people I have talked to with CVID (around here) are not as sick as I am. One guy works and lives a very normal life, and the other woman has so much going on, but she is still really mobile and out and about. Clearly, many are not, like on FB.

Hey, thank you for your links. Good stuff!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Yes, it is supremely irritating to have to put the pieces of the puzzle together ourselves while the sickest we have ever been.

But if you have any kidney elevations at all, please get thee to a hemo at once.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Em, it's funny that you mention that because intercostal neuralgia is basically the same thing as costochondritis which is usually a viral infection, however, interesting that my friend was just diagnosed with it, too and her rheumy said it can be from pneumonia! She has had several bouts of pneumonia and bronchitis. So, now she has it.

Mine has been really bad this year, which I think coincides with this never ending infection that I keep having, but never turns into anything. Last week I had a fever 4 nights in a row with no mucus that was yellow, just feeling sick and I have had this this whole year.

So, my pain and this whatever it is, I feel coincides. And, I've been thinking about it ever since I got these labs today. Which makes me even more so not want to have any kind of surgery because I KNOW something else is causing it.