A case of Wilson's syndrome with normal tests

[Daniil]

Wilson’s Disease: Expect the Unexpected

A 64-year-old woman, presented with abdominal distention, jaundice and resting tremor, was found to have liver injury and abnormal liver enzymes. A computed tomography (CT) scan of the abdomen and pelvis showed abdominopelvic ascites and ...

www.ncbi.nlm.nih.gov

Here is a case of Wilson's-konovalov syndrome with normal cerruloplasmin, daily urine, and no kaiser rings. Normal cerruloplasmin may be elevated due to inflammation. It looks like a liver biopsy is the only 100% test. And most cases of the disease can be undiagnosed

 

[Daniil]

However, as for me, the whole story is suspicious and I think there must be other reasons for the increase in the level of free copper, other than genetics. I have already suggested that a B12 deficiency may be the cause. I wonder what Ray thinks about this. Has anyone asked him?

 

[BearWithMe]

However, as for me, the whole story is suspicious and I think there must be other reasons for the increase in the level of free copper, other than genetics. I have already suggested that a B12 deficiency may be the cause. I wonder what Ray thinks about this. Has anyone asked him?

Wow this is really interesting, why do you think B12 deficiency is a root cause?

Zinc is used as a treatment for Wilsons disease. Zinc supplements were always causing flare-up of my symptoms.

When I think about it, B12 causes very similar flare-up for me.

Too much unbound copper released to the bloodstream too quickly?

 

[Daniil]

Wow this is really interesting, why do you think B12 deficiency is a root cause?

Zinc is used as a treatment for Wilsons disease. Zinc supplements were always causing flare-up of my symptoms.

When I think about it, B12 causes very similar flare-up for me.

Too much unbound copper released to the bloodstream too quickly?

Hypocupremia associated with prior vitamin B12 deficiency - PubMed

Clinical similarities between vitamin B(12) and copper deficiencies prompted us to investigate if hypocupremia is present in patients receiving vitamin B(12) supplementation. Our pilot study results indicate that a significant number of elderly patients with prior diagnosis of vitamin B(12)...

pubmed.ncbi.nlm.nih.gov

I gave a link in another topic to this study, which suggests that a B12 deficiency leads to a copper deficiency. But the levels of copper in the serum depend mainly on cerruloplasmin, so I assume that B12 is needed for the synthesis of cerruloplasmin(similar to hemoglobin). In addition, the symptoms of Wilson's and B12 deficiency are similar and no one can really explain why Wilson's syndrome can lead to anemia even at the initial stage.

Zinc reduces both free copper and cerruloplasmin. But you need cerruloplasmin, and in Wilson's syndrome, it can be non-functional(copper-free) and degrades quickly, which usually leads to low levels. I think that copper chelators are the preferred treatment.

 

[Daniil]

By the way, I have a single gray hair, which may indicate a deficiency of (functional) copper. Wilson's syndrome is not only an excess of free copper, but sometimes a deficiency of functional copper, obviously

 

[Daniil]

I think with Wilson's syndrome, should avoid things that deplete functional copper, such as sugar and zinc.

 

[Daniil]

Effects of copper aspirinate and aspirin on tissue copper, zinc, and iron concentrations following chronic oral treatment in the adjuvant arthritic rat - PubMed

Concentrations of copper, zinc, and iron were analyzed and compared in a number of tissues of adjuvant arthritic rats following 22 d of chronic treatment (per os) with either vehicle, aspirin or copper aspirinate, at doses of 100 mg/kg, 200 mg/kg, or 400 mg/kg. Such chronic treatment resulted in...

pubmed.ncbi.nlm.nih.gov

It seems that aspirin can be used not only for chelating iron, but also copper and zinc!

 

[Daniil]

however, here they used large dosages, more than 8 grams

 

[Daniil]

I even suspect that the main part of the symptoms of Wilson-Konovalov syndrome is due to exactly a lack of functional copper.

 

[BearWithMe]

By the way, I have a single gray hair, which may indicate a deficiency of (functional) copper. Wilson's syndrome is not only an excess of free copper, but sometimes a deficiency of functional copper, obviously

That would explain sooooo much. I have basically all the symptoms of copper deficiency and copper toxicity at the same time. This was puzzling me for so long...

But B12 supplementation alone never worked for me. Maybe I'm not absorbing it properly? Or maybe I'm missing some other co-factor? Retinol, maybe?

By the way, I was experimenting with copper supplementation in the past. On some days, it made me feel amazing, almost as if it cured all my health issues. But on some days, it made me feel absolutely horrible. It was totally random.

 

[Daniil]

That would explain sooooo much. I have basically all the symptoms of copper deficiency and copper toxicity at the same time. This was puzzling me for so long...

But B12 supplementation alone never worked for me. Maybe I'm not absorbing it properly? Or maybe I'm missing some other co-factor? Retinol, maybe?

By the way, I was experimenting with copper supplementation in the past. On some days, it made me feel amazing, almost as if it cured all my health issues. But on some days, it made me feel absolutely horrible. It was totally random.

About retinol. I've been thinking about it. I used to take megadoses of retinol for acne, but it didn't cure me of other diseases. And with acne, it didn't help much. Retinol is needed for the synthesis of cerruloplasmin. And in people with Wilson-konovalov syndrome, the main problem is that cerruloplasmin does not contain copper/breaks down quickly(and not in poor synthesis). Maybe retinol can help, but I don't think it will do much.

As for B12 , that's just my guess. I think there must be other reasons. Moreover, it is not always possible to find defective genes in patients with Wilson's syndrome. I lack any knowledge of physiology and would be very interested to know what Ray thinks about all this.

 

[Daniil]

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Another good news is that there are cerruloplasmin preparations obtained from donated blood. They are used for detoxification. Perhaps you should ask your doctor to prescribe it for you if the diagnosis is confirmed. If the doctor knows anything about it, I think, he must agree. I think, it is safe

 

[Daniil]

(functional) copper is needed to break down histamine. I think, against the background of copper deficiency, there may be problems with histamine. Cerruloplasmin can help with this.

 

[Daniil]

Perhaps Wilson's syndrome is as common a disease as, for example, Gilbert's syndrome (which I also have). It's just that doctors can't diagnose it.

 

[Daniil]

After a few days of a copper-free diet, I got a stuffy nose, lol. This confirms the importance of copper.

 

[Daniil]

Well, either a restriction of copper and cerruloplasmin, or large doses of aspirin + copper(preferably from animal sources with functional proteins and vitamin A)

 

[BearWithMe]

Apparently, iron and vitamin C are both co-factors in copper metabolism. Liver looks like absolutely perfect food for someone with Wilson's disease - it have everything, retinol, b12, iron, copper... only vitamin C is missing.

...obviously that's assuming Wilson's is actually a deficiency of copper cofactors, otherwise it would be pretty horrible food for someone with Wilson's.

 

[Daniil]

A role for ascorbic acid in copper transport - PubMed

Scurvy-like symptoms have been seen in experimental copper deficiency. This forecasts a role for the vitamin in copper metabolism. Ascorbate has been known to antagonize the intestinal absorption of copper. More recent studies have characterized a postabsorption role for ascorbate in the...

pubmed.ncbi.nlm.nih.gov

About the ascorbate... I saw this. There is supposed to be some connection between vitamin C and cerruloplasmin. But I still don't understand what it is. It is a pity that there is no link to the full article

 

[BearWithMe]

There is!

 

[Astolfo]

Do you guys have elevated anxiety from copper toxicity, or is it the opposite? Also do you got any motor symptoms like myoclonus/sudden muscle contraction or difficulities with motor control?

Also do you have any symptoms of diabete's?