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My test results from KDM

Helen

Senior Member
Messages
2,243
Thanks @Leachim for an interesting post. I am looking for a good book on immunology. Could you recommend any of those that you have read?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
MS as is persistent low ferritin and low D3 levels.

Also both are extremely common in ME. My specialist told me he sees low ferritin in lots of his ME/CFS patients and sees it as being one of the common abnormalities ME/CFS causes. I have abnormally low ferritin too even my normal iron blood test is in normal range.
 

Mij

Messages
2,353
@justy when my ferritin levels were down at 5 over 10yrs ago I could barely walk without feeling out of breath.
Hi Justy,

I hope you will get all the help you need from KDM, but just some comments on the lab values that I am familiar with.

Your TSH indicates a low thyroid but should first be completed with free T3 and free T4. And test for antibodies. Often a lowered body temperature correlates with a low thyroid. www.stopthethyroidmadness.com has a lot of good information.

An iron deficiency might have an impact on the function of the thyroid. According to two thyroid doctors the ferritin should be high in reference range.

A B12 deficiency might cause an iron deficiency. Quoting a doctor: "without enough B12 the iron will not stay". What about other markers for B12 deficiency as homocystein and methyl malonic acid?

With a low thyroid, iron and eventually B12 (and folate) you are also more prone to infections and an impaired immune system.

Good to see some treatable issues among the others that I don´t know enough about. Best of luck, Justy!


So does having low thyroid function cause iron and B12 deficiency? I read on stop the madness that low thyroid decreases stomach acid production.
 

RML

Senior Member
Messages
403
So I have my results back and have hurt my brain trying to understand them all - but as there is not too much that is out of range it hasn't been too hard.

I will just post the results that were out of range, with the reference ranges if applicable.

food intolerance panel - only chicken egg showed a strong reaction. With wheat, gluten, rye and mushrooms showing a slight but very low reaction.

Bartonella henselae IgG marked as 1/64 in red (meaning positive), but then says: meaning of low titres is unknown.Aspecific reactions are possible. Then underneath it says Bartonella - negative.

I also have another remark on Yersinia which says: see enclosed immunoblot report. The report makes no sense to me - a reference strip and patient strip with bands that I cant read or understand, except the report has the word negative on it.

Chlamydia serology - Chlamydia pneumonia IgG POSITIVE. IgA NEGATIVE. I'm not sure if this means I have CPn or not - would fit with my symptoms and I have had pneumonia twice in the past 6 years. The report also has a band with reference ranges, but again I don't understand how to read it, but it says Cpn = pos. 18P.

Perforin mRNA expression = 1300 reference range listed as 250,00 - 750,00 (I though the ref range was in the thousands and my perforin was low, but my husband says the way they do it in Europe is that the 250,00 is 250 -750 and therefore my perforin is HIGH - which I think means my NK cell activity is actually high, not low as seen in M.E)

Prostaglandine E2 = 17.46 reference range 0.10 - 2.81 HIGH (inflammatory? highly correlated with brain inflammation?)

Soluble CD 14 = 3908 reference range 1430,00 - 2800,00 HIGH not sure what this means?

NAGA (I presume nagalese) DPP4 Adult = 18.39 reference range 18.80 - 33.79 SLIGHTLY LOW. All other Naga normal.

CYTS (cytokines?) all normal except IL-8 Serum = 2394 reference range 0.00 - 15.00 HIGH

T cells, B cells, NK Cells screening all listed as normal.

Haemoglobin = 11.6 reference range 12.0 - 16.0 Iron levels LOW again!

MCV LOW = 81 " " 82 - 98

MCH LOW = 26 " " 27 - 34

Antinuclear Factor = 80 reference range 0 - 40 Antinuclear antibodies detected in a speckled pattern

Ferritin = 7 reference range 12 - 125 LOW again!

Vitamin D3 25 OH = 10.6 reference range 20.0 - 43.0 LOW.

TSH marked as in range, but it's at 3.42, which I think is quite high.

Stool test shows a low diversity index of 3.00 with Dysbiosis associated with low diversity.
Also a low Firmicutes versus Bacteroidetes ratio which may be associated with gut inflammation.

The biggest shock has been seeing the ANA result - especially as I have wondered for years if I may in fact have something like Lupus, rather than M.E. KDM did test me for VDRL which many Lupus patients have a false positive to and mine was negative, so I guess he was considering Lupus - although it doesn't have to be positive . It seems to me as well that my immune system is inf act ramped up, rather than down, which fits with the autoimmune hypothesis.

I looked at the Lupus criteria today again and you need 4 for a diagnosis and I now have 7 Cpn is also commonly found in Lupus and MS as is persistent low ferritin and low D3 levels. I will be asking KDM what he thinks about this when I have my phone consult in a couple of weeks.

It may also explain why I no longer seem to catch colds, flu etc, whereas years ago I was non stop catching things.

I would be very interested to hear what others think about my test results - I don't seem to have the typical 'M.E' pattern I don't think...

All the best
Justy.

Hi Justy, Glad you finally got some answers and the long inpatient wait for them is over. I found it all over whelming at first, so many results all together (esp after so long of nothing). Give yourself time to go through them gradually and absorb it all. When you talk with KDM you will get more answers too and a fuller picture of what he reckons is going on.

Sorry I can't help too much with the test results and what they mean, this is all new to me too, and I'm still trying to get to grips and understand some of mine.

I wish I got my thyroid testing done, it was one I meant to mention and ask for but completely forgot in my dosy haze on that first visit. I should have brought my mum in with me when Jan was going through the proposed tests.
 

Helen

Senior Member
Messages
2,243
@justy So does having low thyroid function cause iron and B12 deficiency? I read on stop the madness that low thyroid decreases stomach acid production.

As far as I know there is no definite or general answer to this. Many still need supplementing B12 though treated properly for the low thyroid. Low thyroid makes most functions go low and slow if not treated. Hypothyroidism is mostly caused by an autoimmune reaction (Hashimoto´s disease) and there are cases that have been cured after amalgam removal or a gluten-free diet.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@justy do you take vitamin D3 at all?

I did take it for a while about 4 years ago and it helped with my cognitive function at the time, which was really terrible. Haven't taken it since then though.

My ferritin has also been lower - at 5 a few years ago and when I went back over old NHS blood tests I saw it had been at 5 for at least 6 years! I did take iron supplements for a few years - after taking them religiously for over a year the highest my ferritin ever got was 11, ow I see it has dropped back down again now that I have stopped supplementing.

My GP said some people need to take iron for the rest of their lives, but im not sure if this is a good idea? I know you can have anaemia of chronic disease and I think the iron supplements can drive inflammation in some people. I dip in and out of anaemia and see my haem levels are low again. I do have symptoms - severe breathlessness and palpitations etc. Guess ill have to get back on the iron, even though it messes with my stomach and the woes in that department are already quite profound.

I thought I might wait and see what KDM says about the iron and D3 and what supplements if any to take.
 

Mij

Messages
2,353
@Helen interesting regarding low B12 not allowing iron supplementation to increase ferritin. This happened to me last year when my B12 levels dipped below 218. I could not increase my ferritin with iron which was not a problem in the past.

@justy I wonder if it's possible that your B12 shots are not addressing a B12 functional problem and this is why iron supplementation is not working for you? I hope your doctor can solve this mystery.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@justy

Just a note: my TSH and other thyroid tests indicated hypothyroid before treatment with KDM. (My TSH was about 5). I did take a low dose of Armour for a while but now my thyroid function has normalized and I don't need it anymore. So, indeed, it was downstream.

Sushi
 

Leopardtail

Senior Member
Messages
1,151
Location
England
So I have my results back and have hurt my brain trying to understand them all - but as there is not too much that is out of range it hasn't been too hard.

I will just post the results that were out of range, with the reference ranges if applicable.

food intolerance panel - only chicken egg showed a strong reaction. With wheat, gluten, rye and mushrooms showing a slight but very low reaction.

Bartonella henselae IgG marked as 1/64 in red (meaning positive), but then says: meaning of low titres is unknown.Aspecific reactions are possible. Then underneath it says Bartonella - negative.

I also have another remark on Yersinia which says: see enclosed immunoblot report. The report makes no sense to me - a reference strip and patient strip with bands that I cant read or understand, except the report has the word negative on it.

Chlamydia serology - Chlamydia pneumonia IgG POSITIVE. IgA NEGATIVE. I'm not sure if this means I have CPn or not - would fit with my symptoms and I have had pneumonia twice in the past 6 years. The report also has a band with reference ranges, but again I don't understand how to read it, but it says Cpn = pos. 18P.

Perforin mRNA expression = 1300 reference range listed as 250,00 - 750,00 (I though the ref range was in the thousands and my perforin was low, but my husband says the way they do it in Europe is that the 250,00 is 250 -750 and therefore my perforin is HIGH - which I think means my NK cell activity is actually high, not low as seen in M.E)

Prostaglandine E2 = 17.46 reference range 0.10 - 2.81 HIGH (inflammatory? highly correlated with brain inflammation?)

Soluble CD 14 = 3908 reference range 1430,00 - 2800,00 HIGH not sure what this means?

NAGA (I presume nagalese) DPP4 Adult = 18.39 reference range 18.80 - 33.79 SLIGHTLY LOW. All other Naga normal.

CYTS (cytokines?) all normal except IL-8 Serum = 2394 reference range 0.00 - 15.00 HIGH

T cells, B cells, NK Cells screening all listed as normal.

Haemoglobin = 11.6 reference range 12.0 - 16.0 Iron levels LOW again!

MCV LOW = 81 " " 82 - 98

MCH LOW = 26 " " 27 - 34

Antinuclear Factor = 80 reference range 0 - 40 Antinuclear antibodies detected in a speckled pattern

Ferritin = 7 reference range 12 - 125 LOW again!

Vitamin D3 25 OH = 10.6 reference range 20.0 - 43.0 LOW.

TSH marked as in range, but it's at 3.42, which I think is quite high.

Stool test shows a low diversity index of 3.00 with Dysbiosis associated with low diversity.
Also a low Firmicutes versus Bacteroidetes ratio which may be associated with gut inflammation.

The biggest shock has been seeing the ANA result - especially as I have wondered for years if I may in fact have something like Lupus, rather than M.E. KDM did test me for VDRL which many Lupus patients have a false positive to and mine was negative, so I guess he was considering Lupus - although it doesn't have to be positive . It seems to me as well that my immune system is inf act ramped up, rather than down, which fits with the autoimmune hypothesis.

I looked at the Lupus criteria today again and you need 4 for a diagnosis and I now have 7 Cpn is also commonly found in Lupus and MS as is persistent low ferritin and low D3 levels. I will be asking KDM what he thinks about this when I have my phone consult in a couple of weeks.

It may also explain why I no longer seem to catch colds, flu etc, whereas years ago I was non stop catching things.

I would be very interested to hear what others think about my test results - I don't seem to have the typical 'M.E' pattern I don't think...

All the best
Justy.
Justy,

the stuff I can comment on is the hormone/iron related. Low iron or D3 can contribute to hypothyroidism hence both matter. Ideally I would like to know what your 1,25 Vitamin D is running at, just as low D3 creates hypothyroidism it in turn can raise the ratio of 1,25 Vitamin D to 0,25 Vitamin D.

It would be useful to know what your other iron markers are like, especially Iron Binding Protein.

The immunology is more @MeSci 's field. My understanding is fairly basic.

Leo
 
Messages
79
Im just a newbie and maybe someone else already said it:
guess was yasko saying sometime that low ferritin is from chronic infections usually bacterial.
maybe this should be your target - identifying pathogens ...my two cents.
I also have Yersinia identified but also much more pathogens including Hpylori.
any stool sample? gram negative bacteria?
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Im just a newbie and maybe someone else already said it:
guess was yasko saying sometime that low ferritin is from chronic infections usually bacterial.
maybe this should be your target - identifying pathogens ...my two cents.
I also have Yersinia identified but also much more pathogens including Hpylori.
any stool sample? gram negative bacteria?

stool samples looked at levels of different bacteria an showed low levels of some and Dysbiosis due to lack of diversity.

Looks like I may have Chlamydia Pneumoniae which is a gram negative bacteria and could be eating up all that iron I guess. I imagine he will want to treat that - I agree pathogens are the way to go. Cpn fits with my symptom picture as this 6 year relapse back into ill health began with a very long and difficult to treat bout of pneumonia, since then I have had it once more as well and it was atypical - which fits with CPn.

Thanks for your comments.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I agree with @daisybell , @justy low titer ANA is not significant. Mine is also 1:1280 and no one cares. They say heathy people have high ANA and never develop an illness. It's not specific enough.

It's true that low titre ANA can be related to no specific identifiable disease and high titre ANA is related to multiple diseases, and @justy 's is low by most counts, but my rheums generally treated low titre ANA as something to be watched, in case of developing a (recognized) disease. Speckled seems to go with Lupus and RA and I forgot what else.

However, many PWME have an elevated ANA, so it could be from that. Infection is one thing that can cause elevated ANA, but ME could be autoimmune.

I have generally seen the significance threshold for ANA stated as 1:160. An NP or PA once told me that 320 was "evidence of widespread inflammation".

@Kati your doc is negligent, but we knew that. sigh.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
Hi @justy.

I also have had a number of the symptoms for lupus. An acquaintance who has RA told me that it took 10 years for her sister's lupus to show up on tests, although she had symptoms during that whole time.

My ANA in November 2011 (when I was very ill, hospitalised) was 1:320. Speckled pattern.

The comment from the lab was as follows:
"ANA occur in association with most systemic autoimmune disease, particularly SLE. They may also be found in other acute and chronic inflammatory diseases. Low titre ANA (<320) are common in elderly individuals without apparent disease, and in healthy relatives of patients with systemic autoimmune disease."

The neurologist and the rheumatologist both said it was nothing to worry about. Mind you, the neurologist doesn't believe in ME/CFS and the rheumatologist was the one who suggested I try drinking red bull to alleviate severe symptoms.

@WillowJ I was never quite comfortable with the dismissive attitude towards this ANA result. At some stage I would like to have a retest. Maybe through the new Gold Coast clinic when it opens.

In my case it could be inflammation caused by ME. I am looking forward to asking these questions when I get an appointment at the new Gold Coast clinic.
 

Leachim

Senior Member
Messages
51
Location
Sweden
In the future I think watching for autoantibodies will be one way to screen for disease processes to find them long before they have progressed long enough for us to get ill. It seems like we tolerate a certain amount of ”load” on our immunological and endocrinal systems before they tend to get unbalanced and cause a lot of different negative effects. Today doctors diagnose the effects, but medicine has very rudimentary models of describing the processes that are going on long before that. Autoimmunity and/or inflammation are part of the core of most of the diseases that are hard to control (cancer (at least some forms), arterosclerosis, dementias (at least some forms), autoimmune diseases, ME/FM/IBS/etc, etc...).
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Of course the main issue here with antibodies is 'how do you feel'. Its all very well telling people they only have low tires so don't have an illness - what if you've just spent the past 6 years MORE ill than the average Lupus or MS patient. How can they continue to argue that low levels show you 'might be developing' a disease.

We clearly already have one and it is well know that in Lupus titres to do not correlate to illness levels - some people have them high when they are in remission and low or even undetectable when their disease is more active. And then there is ANA negative autoimmunity as well, which is rare but possible.