• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

Dechi

Senior Member
Messages
1,454
Hello,

I haven‘t written in a while but I sometimes come to read what’s going on. Tonight I have some questions.

I did some blood and urine tests recently and the urinalysis showed a very high albumin/creatin ratio of 7 times the norm. This is usually associated with renal disease.

I sent these results to the medical team whose study on ME/CFS I’m a part of, thinking this might just be a lab mistake, as I always had a normal albumin/creatin ratio. They weren’t testing this specific parameter, but the lead researcher sent my doctor a note, saying he might have the explanation for this result, knowing I don’t have either diabetes nor hypertension. He said I had very elevated TGF- beta-1 levels (4 times the norm) and that might explain it. He suggested looking into Losartan to treat me.

I won’t be talking to my doctor before next week, and this is worrying me a lot. At first we were going to retest the albumin/creatine in 3 months, but now with these elevated cytokins, I think we need to do something about it now. My doctor wrote in my file (I have online access) that she wants to take care of that before trying the Losartan, which is a drug she likes prescribing when needed. I’ve been feeling worse than usual all winter (even though all winters are hard) so now I’m wondering if this is the cause of it.

So…. anyone ever had similar results ? Did any medication help lower those 2 parameters and make you feel better ?

Thanks for any insight you might have.
 

Zebra

Senior Member
Messages
866
Location
Northern California
Hi, @Dechi

I have elevated TGF-beta-1.

My result was 4060 (range 344 to 2382).

I've actually been meaning to create a poll on Phoenix Rising to see if others do as well. I was wondering if it might prove to be a useful blood test to help diagnose ME/CFS.

What I was told, by the doctor that ordered the test, is that TGF-b1is a marker for inflammation, but it is unspecific.

Even the Mayo Clinic's explanation for elevated TGF-b1 is rather vague:

INTERPRETATION:
Results are intended for research purposes or in attempts to understand the pathophysiology of unusual immune or inflammatory disorders.


Honestly, that description made me laugh out loud, as it sums up my medical journey to date.

I wish you very well with your upcoming doctor's appointment. I hope you will please keep us posted!
 
Last edited:

Dechi

Senior Member
Messages
1,454
@Zebra I certainly will keep you posted.

I’ve read about elevated growth transforming factor (TGF-B 1) and what I don’t like is they can be a risk factor for cardiac disease and cancer. It seems that they have a protection role, which kind of becomes the opposite when elevated.

I also don’t understand why the microalbumin/creatinine ratio is so elevated. Hopefully we can shed some light on it soon.

Thanks for your input.
 

Zebra

Senior Member
Messages
866
Location
Northern California
I've read about elevated growth transforming factor (TGF-B 1) and what I don’t like is they can be a risk factor for cardiac disease and cancer.

Thanks for sharing that with me @Dechi.

Unfortunately, I think any pro-inflammatory state or condition likely puts us at greater risk for cardiovascular disease and cancer.

It's interesting that in all my years as a rheumatology patient the doctors only used CRP and ESR as markers of inflammation, and my results have always been exceedingly low.

I didn't mention this to you earlier, but I actually have a lab slip from my primary care physician to check my urine albumin/creatine ratio! It's odd that I seem to be following in your footsteps.

My doctor ordered this test because my previous urinalysis detected a small amount of protein in my urine. I will let you know when I take the test and obtain the results.

And again, best wishes for your upcoming appointment.

:hug:
 

Dechi

Senior Member
Messages
1,454
I didn't mention this to you earlier, but I actually have a lab slip from my primary care physician to check my urine albumin/creatine ratio! It's odd that I seem to be following in your footsteps.

Oh, I’ll be very interested to know what you find !

And again, best wishes for your upcoming appointment.
Thank you !
 

halcyon

Senior Member
Messages
2,482
So…. anyone ever had similar results ?
Personally, I've never been able to get this test ordered for me. Generally, several studies have shown elevated TGF beta in ME patients; 5 out of eight studies according to a 2015 review (Blundell et al., 2015), and more studies have looked at it since (Montoya et al., 2017). One large caveat though is the claim that measurements of this cytokine are extremely reliant on proper blood sample processing, where improper processing can cause false elevations (Roerink et al., 2018; Clark et al., 2017). I tend to believe this because if you look at the collection instructions from Quest Diagnostics, they are very exacting, requiring immediate processing with multiple centrifuging steps and immediate freezing. The main problem seems to be that platelets can spill out TGF beta into the sample if they aren't removed quickly and completely.

All of that said, I do personally believe that TGF beta is probably actually elevated in this disease, because regulatory T cells (Tregs) are a major source of TGF beta, and elevated Tregs are another repeat finding in ME studies.

What I was told, by the doctor that ordered the test, is that TGF-b1is a marker for inflammation, but it is unspecific.
Like most things immunology, it's complicated, but TGF beta is typically thought of as an anti-inflammatory (immunosuppressive) cytokine. As mentioned above, it's released by regulatory T cells in order to inhibit the inflammatory effects of effector T cells and NK cells. So yes, in that way it's a bit of an indirect marker of inflammation. There is a short (if a bit sobering) discussion of TGF beta in the Montoya paper linked above, in the Discussion section.
 
Last edited:

Dechi

Senior Member
Messages
1,454
One large caveat though is the claim that measurements of this cytokine are extremely reliant on proper blood sample processing, where improper processing can cause false elevations (Roerink et al., 2018; Clark et al., 2017). I tend to believe this because if you look at the collection instructions from Quest Diagnostics, they are very exacting, requiring immediate processing with multiple centrifuging steps and immediate freezing. The main problem seems to be that platelets can spill out TGF beta into the sample if they aren't removed quickly and completely.

Very interesting, thank you ! Since my findings happened in the course of an ME/CFS official study, I tend to believe the processing was done correctly.

I’ve read those studies you linked, although I don’t understand it all and found them interesting. One study correlates elevated THF beta with disease severity. In another study done on mice, they linked elevated TGF beta levels with increased anxiety, fatigue, brain fog, sleep disturbance and others.

Which is why I want to try medication to lower my levels, in the hopes I would get a better life quality from it.
 

Dechi

Senior Member
Messages
1,454
Update : we retested a few weeks later and my creatine/albumine levels were perfectly normal, as usual.

I know why and I had told my doctor but she dismissed what I said. The reason is I drank about 1 liter in 15 minutes because the clinic was closing and I had forgotten I needed to give urine and didn’t need to go. Doctors should listen to us more !

My doc wants to test me for TGF Beta-1 but it needs a special authorization because it’s done outside my province and I think it will be denied. Anyways, I don’t know what she would or could do with those results.