You probably have an autoimmune disease...

[SWAlexander]

Blood tests from 2 weeks ago, but no explanation and diagnosis.
In my case:
CRP high, ANA high, Factor 2 (wild type), Factor 5 (wild type), very low vita D, high B12, low Cortisol, Urin Albumin 100. The list is long, still, doctors cannot come to a conclusion.

 

[georgina699]

Blood tests from 2 weeks ago, but no explanation and diagnosis.
In my case:
CRP high, ANA high, Factor 2 (wild type), Factor 5 (wild type), very low vita D, high B12, low Cortisol, Urin Albumin 100. The list is long, still, doctors cannot come to a conclusion.

From my understanding, if CRP and ANA are positive/high, and sedimentation rate is not normal too, and cancer is excluded, then you have an autoimmune disease and can benefit from steroids or infusions. Have you ever been on steroids or biological medication?

 

[SWAlexander]

From my understanding, if CRP and ANA are positive/high, and sedimentation rate is not normal too, and cancer is excluded, then you have an autoimmune disease and can benefit from steroids or infusions. Have you ever been on steroids or biological medication?

Yes, I´m on Prednison 5mg or sometimes 10 mg since 2008. ACTH low - no pituitary tumor. Pre-diagnosis Addisons. MRI revealed Chiari malformation.

 

[Gingergrrl]

I recently tested positive for ANA and Speckled Pattern, but my PCP did not give me a diagnosis.

ANA is a general test for autoimmunity but the ANA test alone would never give a specific diagnosis (so your PCP is correct about this). Do you know what the titer was? It would say 1:160 or 1:320, etc.

She'll be referring me to a specialist.

This is good

From my understanding, if CRP and ANA are positive/high, and sedimentation rate is not normal too, and cancer is excluded, then you have an autoimmune disease and can benefit from steroids or infusions.

This is not wrong but the reality is more nuanced. In my case, I had several autoimmune diagnoses but my SED rate was always in the normal range (around 6 or 9). But you are totally correct that with many autoantibodies, especially paraneoplastic autoantibodies, it is very important to rule out cancer. And there are many options for treatment depending on what the autoimmune testing discovers.

ACTH low. Pre-diagnosis Addisons.

I don't want to take this thread off track but was curious, were you diagnosed with "pre Addisons" based on having low ACTH? Or did you mean that your ACTH only became low after taking the steroid?

 

[SWAlexander]

ANA is a general test for autoimmunity but the ANA test alone would never give a specific diagnosis (so your PCP is correct about this). Do you know what the titer was? It would say 1:160 or 1:320, etc.



This is good



This is not wrong but the reality is more nuanced. In my case, I had several autoimmune diagnoses but my SED rate was always in the normal range (around 6 or 9). But you are totally correct that with many autoantibodies, especially paraneoplastic autoantibodies, it is very important to rule out cancer. And there are many options for treatment depending on what the autoimmune testing discovers.



I don't want to take this thread off track but was curious, were you diagnosed with "pre Addisons" based on having low ACTH? Or did you mean that your ACTH only became low after taking the steroid?

"pre Addisons" was based on having low ACTH before steroids.

 

[Gingergrrl]

"pre Addisons" was based on having low ACTH before steroids.

Sorry for my confusion b/c usually someone with Addisons has normal (or even high) ACTH but no Cortisol. I don't want to take this thread off track though!

 

[SWAlexander]

"pre Addisons" was based on having low ACTH before steroids.

 

[Gingergrrl]

@SWAlexander I don't see ACTH on the test results that you just posted. Were you talking about Cortisol being low?

 

[SWAlexander]

Sorry for my confusion b/c usually someone with Addisons has normal (or even high) ACTH but no Cortisol. I don't want to take this thread off track though!

cortisol:

 

[georgina699]

cortisol: View attachment 44606

Sieglinde, we see your personal information, FYI.

 

[Gingergrrl]

@SWAlexander Thank you and now I see it with the second page that you posted. If I am reading it correctly then your ACTH and Cortisol are both very low and basically undetectable! You should remove your personal info though to protect your privacy. Was that test from 2007 or it is current? I have a very confusing situation where my ACTH has been undetectable on multiple tests so I have to remain on hydrocortisone.

 

[SWAlexander]

@SWAlexander Thank you and now I see it with the second page that you posted. If I am reading it correctly then your ACTH and Cortisol are both very low and basically undetectable! You should remove your personal info though to protect your privacy. Was that test from 2007 or it is current? I have a very confusing situation where my ACTH has been undetectable on multiple tests so I have to remain on hydrocortisone.

Thank you for your concern about "to protect your privacy". My life is an open book, for the benefit of others to learn, compair and become conscious about their medical condition.

"...where my ACTH has been undetectable on multiple tests..."
Did you ever have an MRI with contrast, regarding the Pituitary gland? Low cortisol and ACTH malfunction is one of the gateways to immunodeficiency.

 

[Martin aka paused||M.E.]

@sometexan84 interesting topic!

The interesting thing about my trajectory:
2013: Diffuse onset of mild ME: flu-like feeling, blurred vision, getting worse after excessive exercise
2015: strep infection treated with AB, six weeks later first outbreak of full-blown psoriasis guttate -> ME-symptoms disappeared promptly and we're gone completely during psoriasis outbreak
2016: chlamydia infection treated with Ciprofloxacin -> psoriasis stops, skin rashes and joint pain disappeared; was floxed with all the flox symptoms
June 2017: flox symptoms disappeared
August 2017: one week of diarrhea -> moderate ME began.

I'm very sure my ME has a strong AI link though I tested negative for the GPCR AchR and MR 3/4 and my ANA is always 1:80 and RF (-)
...
But there is sth, I'm sure!

 

[SWAlexander]

@sometexan84 interesting topic!

The interesting thing about my trajectory:
2013: Diffuse onset of mild ME: flu-like feeling, blurred vision, getting worse after excessive exercise
2015: strep infection treated with AB, six weeks later first outbreak of full-blown psoriasis guttate -> ME-symptoms disappeared promptly and we're gone completely during psoriasis outbreak
2016: chlamydia infection treated with Ciprofloxacin -> psoriasis stops, skin rashes and joint pain disappeared; was floxed with all the flox symptoms
June 2017: flox symptoms disappeared
August 2017: one week of diarrhea -> moderate ME began.

I'm very sure my ME has a strong AI link though I tested negative for the GPCR AchR and MR 3/4 and my ANA is always 1:80 and RF (-)
...
But there is sth, I'm sure!

We have no choice other to educate ourselves and look for doctors who are educated and respect a patient's pain and suffering.

 

[Jadzhia]

If it makes you feel any better, I didn't have any symptom improvement at all when my Hashimoto's finally went into remission.

Just too much other stuff going on in my body I suppose.

'Feeling better' is a tenuous concept these days! I do know I felt immense relief to be diagnosed with Hashi's as it meant I wasn't just imagining my symptoms and I didn't have cancer. Of course at that point I had no idea what having an autoimmune disease would mean!

I also meant to add to my post that my mother also had an autoimmune thyroid disease - Graves'. Plus some rheumatoid arthritis (thankfully I haven't developed that). My grandmother also had RA (not too badly, but still gave her painful hands). There does seem to be a strong genetic link, but it must also need other triggers to set off.

 

[SWAlexander]

'Feeling better' is a tenuous concept these days! I do know I felt immense relief to be diagnosed with Hashi's as it meant I wasn't just imagining my symptoms and I didn't have cancer. Of course at that point I had no idea what having an autoimmune disease would mean!

I also meant to add to my post that my mother also had an autoimmune thyroid disease - Graves'. Plus some rheumatoid arthritis (thankfully I haven't developed that). My grandmother also had RA (not too badly, but still gave her painful hands). There does seem to be a strong genetic link, but it must also need other triggers to set off.

Most of us can live with a diagnosis, or at least learn to manage the symptoms. I have a problem with a diagnosis that does not match the symptoms. The still uncovered is my biggest challenge. I always hope a doctor tells me - now we found all, just learn to live with it.

"There does seem to be a strong genetic link, but it must also need other triggers to set off."

Right.
Also, bad genes and gene methylation continue, and we add to our genetic pattern an epigenetic. Covid-19, other viruses and bacterial will do the trick.

 

[ChookityPop]

how much does it cost?

Autoimmune SFN panel at celltrend costs 224,- euro.

 

[SWAlexander]

Sieglinde, we see your personal information, FYI.

sorry, I don't understand the acronym "FYI".

 

[Jadzhia]

sorry, I don't understand the acronym "FYI".

FYI = For Your Information

 

[SWAlexander]

Autoimmune SFN panel at celltrend costs 224,- euro.

There is another possibility. All genes (RAW DATA), RS and SNP (single nucleotide polymorphism) (SNPedia), can be discovered by taking an ancestry DNA test.
DNA testing companies are listed: https://promethease.com/