Unfortunately, I don't know enough about Wilson's Disease to answer your question. What has your doctor said about the results of your blood test? Did he/she mention Wilson's Disease? I'm sorry I can't be of more help. Perhaps another member will have more insight to offer you.
Like halbashes, I'm not terribly familiar with Wilson's. I'll give you what information I can; you may want to talk to people in the liver community and see if anyone there knows about this. Perhaps the doctor on the Liver Transplant Expert Forum could also be of help (there isn't any other expert forum for a related field that I'm seeing).
From what little I have read, it seems that hepatic (liver) symptoms would be most prominent, such as jaundice--yellowing of the skin/whites of eyes, followed by neurological and behavioral/psychological problems. Indications of dysautonomia seem to be present in a minority of Wilson's patients, but there is a correlation; I say "indications" because some of the patients had signs of dysautonomia but were asymptomatic.
(Medically speaking, a "sign" is something measurable and observable by the doctor such as an abnormally blood pressure, while a "symptom" is something subjectively experienced by the patient such as "lightheadedness.")
According to the Mayo clinic, the diagnostic process for Wilson's includes much more than the one test you had; I think reading this may be helpful to you.
This is the abstract of an article regarding dysautonomia in Wilson's; without access to this journal (Clinical Autonomic Research) you can't view the full article for free, but the abstract gives a pretty decent summary of their findings.
Here's some information from Cleveland Clinic:
And the Wilson Disease Association:
Sorry I can't be more helpful with this one. I had trouble finding much specifically regarding dysautonomia in Wilson's, and I'm not familiar with the test you had.
Many thanks for your information it is greatly appreciated. I don't think it is a strong possibility that I do have this but with the result being low it is safer to rule it out properly, I suppose testing my copper levels is the next step. I have also been tested for Antiphospholipid Syndrome and have shown to be positive for this (my cardiolipin AB Anti CL IgM level is 39 - normal lab range 0-10), but as I have had 3 successful pregnancies they are not to concerned over this.
I see my cardiologist again in just over a week and he ordered these tests so I will discuss them with him then.
Halbashes & Heiferly,
Regarding my POTS diagnosis what questions would you advise I ask him. I seen a neurologist last week and he is happy to leave me in the hands of my cardiologist and he does believe my illness to be POTS. He said treatment will be by trial and error for me. At the moment I am taking 100mg twice a day of fludrocortisone. I was on bisoprolol but these were stopped because they made me feel worse. My main symptoms at the moment are bad dizzyness/lightheadedness, bp fluctuations, numbness in arm/leg, thirst, and general weakness and feeling of being unwell. There is an autonomic testing unit in London, Uk and I am wanting to be sent there for a full autonomic evalutation but the neurologist thinks that is a long way off yet...what is your opinion. Mine is the sooner they determine the extent/nature of my POTS then the higher chance I have of managing this effectively, I have a young family to support alone and can not afford to be pondering. I am a Phlebotomist and am at risk of loosing my job if I cannot show that I will be capable (safely) of carrying out procedures on my patients. I am aware that with this condition their are no guarantees that treatment will work but would like the best chance of becoming fully functional again.
Thank you again for all your support, my family are here for me every step of the way, but they do not understand how ill this can make you feel - even though on the outside you look ok. It is comforting to know I can ask for advice from people who understand xx
Well, to a great extent treatment is trial and error for all of us with the exception being in cases where a full autonomic workup reveals a cause for the dysautonomia, in which case there may be targeted treatment available for that cause. (One of our more active members that successfully got diagnosed at Cleveland Clinic on this side of the pond is a perfect example of this, but I'll leave it up to her to speak more on this subject if she wishes.)
Not to be nit-picky, but just to clear up any possible confusion, you may want to double-check your dosage of fludrocortisone. The usual dosage is 0.1 mg once or twice daily; I've seen as much as 0.5 mg per day but nothing on the order of 200 mg.
Because not all POTS patients have significant autonomic dysfunction beyond the POTS (and indeed some experts consider significant autonomic dysfunction to be reason enough to exclude a diagnosis of POTS entirely and call it something else), and many POTS patients do well with a combination of lifestyle changes and medication, most doctors take a conservative approach when it comes to referring patients for comprehensive autonomic testing. POTS patients are generally sent for this testing when standard treatment approaches have failed OR when the severity of the symptoms is highly indicative of significant autonomic dysfunction in the first place (e.g., extremely frequent syncope to the point of being bedridden).
I wish I knew what to tell you in terms of pushing forward with trying to get the testing done. I'm not especially familiar with your healthcare system over there, or how difficult it is or isn't for patients to get the autonomic testing if they push for it aggressively. I do understand your concerns in terms of supporting your family and wanting to be in good health for your employment. If anything, you are in my thoughts and I'm pulling for you! Maybe this is naive of me, but can you call the office of the autonomic Dr. directly yourself and ask for their advice on getting a referral?
sorry I wrote my medication values down wrong - I take 100mcg (0.1mg) twice a day. Gosh I am overdosing myself!!! Thanx for pointing that out to me.
I think I'm still at a stage where I believe there must be an underlying cause to my POTS especially as I have this growth on my adrenals, or maybe i'm just hoping we can find one thats easier to treat!! The autonomic unit deals with a whole host of conditions primary and secondary in relation to dysautonomia, including adrenal tumours like Pheochromocytomas. I just think this is the best place for a full evaluation. I want a doctor to tell me what they intend to look for, not to have to ask for specific tests - I hope this does not sound ungrateful to the dr's looking after me.
I was bedridden with this for several months, not due to fainting, but to increased severe weakness on sitting/standing and severe chest pain (my chest felt like it would collapse upon itself). As an inpatient I had to go to a different department for tests (endoscopy), I was not allowed to go on a bed but had to be wheeled. I was near collapse after 15 minutes and by blood sugars were checked. These were low so I was given IV fluids/glucose (I was nil by mouth). I felt great!! I felt so well. I have read about this as a form of treatment.....what respect does this help POTS? and does this possibly indicate what form of POTS I may have?
Sorry for moving away from my original question. I have so many.... i could have you here all week!!! I'm just trying to make sense of all this and put it in some perspective.
I'm glad you can get your adrenal growth addressed in the autonomic workup! Be sure to mention the B12 deficiency too. Even though your B12 is back to normal, the nerve damage can still be there. It can take a long time to regrow nerves once the cause of damage has been removed, and unfortunately, not everyone regrows the nerves. But, that is one of the "better" causes of autonomic nerve damage, because it's pretty easy to control the B12 levels.
It would be ideal for me to be assessed for all my issues in the one place that specializes in them. Fingers crossed x
My B12 is still low at 176, normal range for my lab is 211 - 911. My GP is holding off my next injection to see if my levels increase on their own now i'm on a gluten free diet (for celiac disease). Could a level of 176 cause symptoms?
I don't know how low B12 has to be before it damages nerves, but certainly if yours has been low over time, it's a good candidated for a cause. Maybe you could print out the MedHelp info on Peripheral Neuropathy, circle B12 as a cause, and take it in to your GP to discuss.
B12 is normally absorbed through the ileum, the last section of the small intestine. Inflammation of the gut and especially of the ileum can cause B12 deficiency. My mom had this problem. She is also diagnosed with an adrenal lesion, and has wild blood pressure fluctuations. Hmmmm........
I have had barium meal X rays of my bowel and these were fine (I am deficient in a few things at the moment and am a newly diagnosed celiac) but I will not rule out anything. I do get lower right abdominal pain and this was checked during the x rays.
Has your mum had her lesion investigated? What was her dx? I hope she is ok.
If I were u I'd definitely get checked for Wilson's Disease. My son was diagnosed with it last September. They did a liver biopsy on him and his level of copper was 929. He has never, to my knowledge, had jaundice. He doesn't have the kaiser Fleisher copper rings in his eyes. His ceroplasmin was a little low...I think around what yours is. He does have the steato hepatitis (fatty liver), fibrosis and the start of cirrohsis. I hope you will find out for sure!
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