Experiences with

Haemochromatosis

Hi, I am a lady with an underactive thyroid but also suffering with Hypoparathyroidism. It is genetic in our case not surgery related, my son is also a sufferer. I take calcitriol but am now worried I have liver damage due to my medication. I would love to talk to someone else with the same as I.

To bring you up to date, then, haemochromatosis is a genetic disorder which prevents the body from using the iron taken in with food.

If so, are you linked into the Haemochromatosis Society?

Just to say my husband passed today with multiple organ failure ultimately related to his cirrhosis. We didn't even make it to the transplant list. Of course not everyone can. So when the docs say stop drinking and eat well those are the only treatments that are in your hands whereas everything else

I had bloods done at the beginning of the month but before posting them I was waiting for my vitamin result. The dr did a full blood count and only a couple were out of range creatinine 36 / 44 - 80 don't know what that means. alkaline phosphatase 155 / 30 - 130 am going for a liver scan

I had my iron blood test. Why do I have such high ferritin levels and yet my serum iron levels and saturation levels are lowish? IRON 15.3 umol/L 10.6 - 28.3 T.I.B.C 58 umol/L 41 - 77 TRANSFERRIN SATURATION 26 % 20 - 55

Hi, everyone. I have got the results of the full iron screen and don't have a clue - can anyone help, please? They are:- Serum ferritin – (LP59) – normal, no action……….....111ug/L……......10 – 290 ug/L Ca 125 – (LP59) - normal, no action……..…....16iu/mL…….......0 – 35.00 iu/mL Iron profile

Ive hereditary polycystic liver disease and my liver function tests are way outside the norm. I've stopped drinking alcohol and the last test was better, but I'd hate to think that I can't drink again, even just occasionally ie holidays, birthdays, etc. does anyone have any experience to share and/or

Hi everyone further to my blog on 'more antibiotics':- I have completed the erythromycin course for the calcinosis in my left knee, with a marginal improvement but it has not healed so I have now been prescribed minocycline. Being a self confessed antibiotic junkie, through no choice

wonder if anyone has been diagnosed with this. Awiting for another MRI which I thought was going to be done but it was a ct and told that there is a tumour and they want me to have another test so its another wait which is getting me down. Was told that will probably have embolization. And additionally

My question is, as they have told me to get tested for haemochromatosis, is it passed down through the generations. Has anyone got any experience of this condition, and do I need to get my children, who are now young adults tested.

Ive just had the results from the swab of the calcinosis lump on my left knee and have to take more antibiotics boo hoo ! Having had almost a 2 week antibiotic free period - the first time this year, and I had just about controlled the internal candida which had been on a frolic of its own thanks to

I have Hashimoto, test results shows elevated folate I donot take any folate or B12 supplements ,only selenum,vit C,vit D, N-acetyl cystene,and cod liver oil. Iam on Nature-Throid currently . S ferritin 32 (10-291) ug/L Iron 15 (9-34)umol/L TIBC 75

Hi Ive just joined. Diagnosed with ferroportin disease 15 yrs ago, had liver biopsy(liver healthy apart from being iron-laden) ferritin was 1150, had venesection for 18 months, lowered to 400. liver was healthy (although full of iron) Lfts remained healthy ever since. Recently bloods showed ferritin

I have felt recently that the Amitryptaline has not been as effective as I am not sleeping well again and I am thinking of stopping taking these. I looked up what the effects of using Amitryptaline could be and it pointed to some sort of Hepatic side effects. Elevated liver function tests, drug-induced

Hi everyone everytime I come on this site learn something new about Raynauds , I have haemochromatosis and Raynauds and terrible reflux for which I take Ranitidine and Omeprazole, I just read the question about digestive problems and scleroderma have no clue what that is or possible connection to my

Hope that does not sound bossy but if it is treated early you hopefully will miss out on the ill health that can go with Haemochromatosis

I have just been diagnosed with Raynauds I am waiting to see a rheumatologist who specialises in the condition, in the meantime I wandered if anyone knows if there is a conection between Raynauds and a condition called Haemochromatosis which I was diagnosed with2 years ago

Which scan is the best for helping to diagnose PBC?