Experiences with

Haemochromatosis

So I recently switched to NDT and overall it didn't go too well. I read that one thing that can cause problems is low iron, and my results seem sub optimal, especially for a man. Ferritin 74 (20-345) Total Iron 71 (50-180) TIBC 255 (250-425) Saturation 28% (15-60) According to what I've read, men

Anyone have this? It started about 3 weeks into alternate daily injections and has slowly got worse as I’ve gone along never had it before. Looking up that it can be associated with B12D just wondering why I have it now. I’ve bought some antifungal in case it’s that. Anything else it could be? Any help

I have been living in Japan and found out that my mother is a carrier of the hemochromatosis gene and she told me that I should go get it checked out. Honestly, I got my blood checked and my ferritin levels were the high end of normal and my knees and body and hands are achy. I get black circles under

I had another scan last week which confirmed coarse echotexture and also fatty liver :( . I also have stage 2 fibrosis. The thing is I really don't know what I should be doing, if I should be worried and how to feel about it all. My family and friends are all very relieved that it is not cirrhosis

Hi there I’ve been trying to increase my NDT dose from 1 grain to 1.5 but my hypothyroid symptoms seem to worsen to the point of being unbearable! I’ve had a recent iron blood test with results as follows:- Iron- 15.17 umol/l (5.80-34.50) TIBC- 55.27 umol/l (45-72) Transferrin saturation-27.45% (range

I have used Thriva before and (thanks to this forum) I know of Blue Horizon and Medi-checks. Costs differ quite a bit but this test must be done. Thanks.

The above document is just one of several sources I have now found at long last re iron overload. I like it because it is the simplest one I have revealed! This research was carried out by Dr EF, (Consultant Haemotologist) who works in Gartnavel General Hospital, 2nd Floor Buildings, 21 Shelley Road

I had blood tests back in June results are: Iron 22.41 umol 10.60-28.30 Tibc 52.61 umol 41.00-77.00 Transferrin sat 42.6 % 20.00-55.00 Ferritin 229 ugl 30.00-400.00 Active b12 57.200 pmol 25.10-165.00 Folate serum 9.37 ugl 2.91-50.00 25 oh vitamin d 59.9 nmolL 50.00-200.00 After taking vit d fultium

Does anyone on this forum who has Autoimmune Atrophic Gastritis and injects B12 more regularly than the standard 12wks seen an increase in their iron and ferritin levels? Or even just sees an increase in ferritin and iron absorption after an injection? I haven’t absorbed iron properly since my mid twenties

Hi All Can you please tell me if any of you are familiar or have been diagnosed with hemochromatosis, too much iron is major organs I have just been diagnosed and doctor told me it's likely it's hereditary. I have had symptoms which mirror low ferritin which he does not understand, the symptoms are dizziness

does anyone know whether haemachromatosis affects the immune system.

The nurses at the clinic have never de-ironed anyone with my condition, they see to Haemochromatosis and polycythemia so they and myself have no benchmark to compare in reality. Just a little update for my 'blog' on here so I can look back and see how far I've come...one day.

I had a ultrasound in August which showed Coarse echotexture, then a fibroscan 2 weeks ago showing a reading of 7.9 for fibrosis. I will be seeing a consultant in a few weeks but until then I don't know what I should do, or even feel! I wondered if anyone else has had similar reading/results? and if

I have just received the results of a blood test for iron from Medichecks and would appreciate comments and advice as to how to keep a good level of ferritin. At the beginning of the year my ferritin was 33 though my GP assured me I was not anaemic and when I posted my results SeasideSusie agreed. However

I don't have any of the factors that can bring it about including haemochromatosis 🤗. I probably have a faulty gene, which they don't test as even if you inherit it, the penetrance is low so you'll probably never be symptomatic, I'm just a lucky bugger 😂 good news for my kids though.

Hi all, I'd be grateful for advice on my results. I've been prescribed Vit D supplements as that is low but the others are in range so I assume I don't need to take any of those supplements? Or could they be higher? Vitamin D 48.2 (49.9+) B12 608 (187-883) Folate 5.8 (3.10-20.50) Ferritin 35 (15-204)

Hello again and thank you for previous help. I have a GP appointment on Monday and will be discussing my latest blood test results. Since starting thyroid treatment I feel a little less tired and have a little more energy considering I don't sleep much. I have had no adverse effects. I need to know

I was tested for Haemochromatosis and that came back negative. I am waiting to hear from the local Hospital heptologist on how to proceed. Could the high iron levels be causing the foot problem? I suspect the high iron levels are due to excessive drinking which I have cut back on.

Hello, quick update before I try the dreaded bed time 🙏🏻 So the iron results..... All she could tell me was “normal” when I questioned my ferritin levels all she said was TIBC was 50% and trans saturated 27.9 so was does this mean??? Now down to 3mg of ropinorole and seem to be coping with the help

Had my levels checked again. Still feeling awful. My serum ferritin is 31 ug/L the range is 23-300. My gp has advised to take one iron tablet a day. Not sure why there is a exclamation mark next to the red blood cell count.