Advice on high ferritin, liver and blood work

[Mel.issa]

Hi
I had standard non conclusive blood tests done in April 2019 and was diagnosed with CFS I was at that point moderate and soon became severe and now very severe.

I started taking multivitamins (high in B complex folate and Q10) d-ribose and cod liver oil in November 2019 but was advised to stop taking them by my GP as my liver enzyme results we're abnormal in June 2020

I know that abnormal liver results can be "normal" for CFS but wondered if any of you could comment. I have asked my GP twice to test me for Gilbert's syndrome but he has ignored my request (!)

Also any thoughts about the high ferritin?

I have an NHS appointment with a hepatologist in 3 weeks however they may know little about CFS so if I can be armed with information that would be helpful.

attached are my blood test results from the past 18 months and I wondered if any of you you could interpret these and if there are other avenues I should pursue for testing? And if so which UK testing facilities are best, if not NHS.

Many thanks ☺️

 

[Tammy]

I know that abnormal liver results can be "normal" for CFS but wondered if any of you could comment. I have asked my GP twice to test me for Gilbert's syndrome but he has ignored my request (!)

Possibility: EBV and CMV are two viruses that have capabilities of raising liver enzymes and that have also been connected with CFS.

 

[Mel.issa]

Possibility: EBV and CMV are two viruses that have capabilities of raising liver enzymes and that have also been connected with CFS.

Thanks for this insight. I think that I've had CFS for over 10 years so I wondered what your thoughts were that my liver enzymes have only been elevated in the last few months does that tie in?

I tried to attach my blood results as a PDF but it doesn't seem to work

 

[Mel.issa]

I can upload as png so here we go

 

[Judee]

The body will hide iron away in the ferritin stores as a protective measure in cases where the body is dealing with a bacterial infection and the resulting inflammation.

Your liver may be having a difficult time keeping up with clearing all the byproducts of your immunity working against an infection if that is what is going on with you.

Your Serum Iron level is low so I wonder if your body is working on overdrive to hide the iron.

My mom has been dealing with high ferritin since 2017 when she developed appendicitis. She's had a lot of different bacterial infections since then. She has been on a lot of antibiotics and is also on steroids now which lowers inflammation. Finally her ferritin is normal.

Re: Gilbert's syndrome. I wonder if your skin is yellowish? Is that why you suspect you have that. Anemia can also cause jaundice.

Edit: A person can have anemia and iron overload at the same time. I am adding a chart from the iron disorders institute.

 

[Mel.issa]

Thanks for these thoughts and the pdf is useful @Judee it could be anaemia due to chronic illness then.

Through my iron level with low in in April 2019 but by September 2020 the first photo the iron serum levels seem to have recovered.. though ferritin doubled in that time to 500+ and liver function suffering. So potentially a bacterial infection which I definitely don't know about!

I was reading that mast cell activation syndrome can cause high ferritin
https://www.mastattack.org/2014/10/metabolic-issues-associated-with-mcas/

Hyperferritinemia is not unusual in mast cell disease, including MCAS. 18% of ISM patients have high serum levels of ferritin. It is often misinterpreted as hemochromatosis, even in the absence of the HFE mutation. MCAS patients with a history of red cell transfusion are often told they have hemosiderosis, even when serum ferritin is much higher than to be expected from hemosiderosis. High ferritin in MCAS patients is probably secondary to systemic inflammation. The widely variable nature of the ferritin levels is indicative of inflammation.

 

[Judee]

I'm wondering if that wouldn't mean that your more likely dealing with Autoimmune Hemolytic Anemia instead if anemia is the issue. (It should be on the second page of that attachment.)

Anyway, something to discuss with your specialist.