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Haemochromatosis Society UK

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Newly diagnosed with Hemochromatosis

Hi. I was recently diagnosed with hemochromatosis based on slightly off bloodwork and genetic test. Neither of my parents had hemochromatosis but both were...

Hi. I was recently diagnosed with hemochromatosis based on slightly off bloodwo...

Sunnyskies33

•2 months ago

9 Replies

homozygous, so I have the 2 copies for H63D. I’ve had a thought 💭

I’m homozygous/have the 2 copies for H63D. I’ve have higher ferritin levels over past 7/8 years ranges from circa 180 upto 380 at times. I found out as hubby...

I’m homozygous/have the 2 copies for H63D. I’ve have higher ferritin levels over...

Onedaymore1

•4 months ago

2 Replies

low zinc

how does the NHS treat zinc below range when it will not be absorbed though the stomach and normal oral supplements have no effect?

how does the NHS treat zinc below range when it will not be absorbed though the ...

fiftyone

•8 months ago

2 Replies

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Looking for advice for my husband

Hi, My husband has been feeling extremely fatigued with a foggy brain for months. He finally went to the GP at the beginning of the year as he was also...

Hi, My husband has been feeling extremely fatigued with a foggy brain for month...

lollypocket

•9 months ago

4 Replies

Elevated iron levels-advice please

Hi, Would just like a bit of advice. After years of infertility and miscarriages, we were referred for fertility testing. We have been refused for IVF on NHS...

Hi, Would just like a bit of advice. After years of infertility and miscarriage...

Believeinmiracles82

•9 months ago

2 Replies

Ferritin 13 2 degree heart block 11

Hi Everybody I have hemochromatosis and my ferritin is now 13 but no venesection for 2 years. I have had heart twinges and chronic constipation. I have been...

Hi Everybody I have hemochromatosis and my ferritin is now 13 but no venesectio...

Gladys23

•9 months ago

2 Replies

Test results - haemochromatosis with iron deficiency?

A few years ago I had blood tests which showed high iron levels so my doc suspected Haemochromatosis. I had the genetic testing which showed I had the gene...

A few years ago I had blood tests which showed high iron levels so my doc suspec...

tnefeh

•10 months ago

3 Replies

Genetic test positive

In November 2023 my iron labs were increased. Ferritin 117 TSAT 58 my doctor said we would retest in six month and do genetic testing but wasn’t concerned....

In November 2023 my iron labs were increased. Ferritin 117 TSAT 58 my doctor...

rupertj

•10 months ago

7 Replies

positive test

hi everyone I have just tested positive for genetic haemochromatosis. I have 2 genes. I know nothing about this condition.my blood results was not that high....

hi everyone I have just tested positive for genetic haemochromatosis. I have 2...

Jojo5860

•11 months ago

6 Replies

Hemochromatosis?

I haven’t yet been diagnosed but these are my latest labs Iron: 129 Ferritin 117 Uibc 106 Tibc 255 Iron saturation 58% thoughts?

I haven’t yet been diagnosed but these are my latest labs Iron: 129 Ferritin 1...

rupertj

•1 year ago

8 Replies

newsue

Hi I have had haemochromatosis for 10 years and have always had venesections but now my ferritin is very low 14 and no venesection for over a year. Been...

Hi I have had haemochromatosis for 10 years and have always had venesections but...

Gladys23

•1 year ago

9 Replies

Multivitamins

Hello. I just wondered if anyone could recommend a good multivitamin that has no iron. Since my diagnosis of GH in Dec 2022, my GP advised me to stop taking my...

Hello. I just wondered if anyone could recommend a good multivitamin that has no...

jamessharp87

•1 year ago

1 Reply

? Iron overload

Hi. Was hoping someone could help with my results please? Serum ferritin 62.9 ug/l (13-150) Serum iron 31.1umol/l (10-30) H Serum transferrin 1.86 g/l...

Hi. Was hoping someone could help with my results please? Serum ferritin 62.9 ...

Pomart

•1 year ago

8 Replies

Study: diet of dark green leafy vegetables reduces ferritin

Reduction in Ferritin Concentrations among Patients Consuming a Dark-Green Leafy Vegetable–Rich, Low Inflammatory Foods Everyday (LIFE) Diet...

Reduction in Ferritin Concentrations among Patients Consuming a Dark-Green Leafy...

Autumn_Leaves

•1 year ago

4 Replies

High level of Ferritin after Venesection?

Hi, I had a venesection (500mls) recently followed by a blood test to check levels & the result has come back higher than before the venesection. Has anyone...

Hi, I had a venesection (500mls) recently followed by a blood test to check lev...

roni3hats

•1 year ago

9 Replies

iron infusion

I hear bad stories about iron infusions and allergic reactions. What happens if you get an allergic reaction and once you recover, do you feel better for...

I hear bad stories about iron infusions and allergic reactions. What happens if ...

fiftyone

•1 year ago

4 Replies

Compound varient

anyone else here with the Compound varient? CY282Y + H63D? I have developed Peripheral Atrial Fibrillation, T2 Diabetes and possibly NAFLD(non-alcoholic...

anyone else here with the Compound varient? CY282Y + H63D? I have developed Pe...

LaceyLady

•2 years ago

24 Replies

Fibromyalgia

I’ve been diagnosed with haemochromatosis for 5years and blamed all my aches and pains on it. Today I’ve been diagnosed with Fibromyalgia by my GP, is there a...

I’ve been diagnosed with haemochromatosis for 5years and blamed all my aches and...

annholly

•2 years ago

5 Replies

Ebeneezer

Hi, I am interested in diet suggestions and recommendations for those having weekly venesection. Many thanks

Hi, I am interested in diet suggestions and recommendations for those having wee...

Ebeneezer

•2 years ago

8 Replies

Hemachromatosis

I was diagnosed with hemochromatosis in 2015, which I’m a carrier meaning I have a dna from my dad and mom so that made me a carrier so with that I could have...

I was diagnosed with hemochromatosis in 2015, which I’m a carrier meaning I have...

PurpleRose74

•2 years ago

5 Replies

Diagnosed as Compound Haemochromatosis

I was made aware of this condition by a friend many months ago, possibly 18 months. I forgot about it until one evening around 7.30pm my GP rang to say my...

I was made aware of this condition by a friend many months ago, possibly 18 mont...

LaceyLady

•2 years ago

10 Replies

haemochromatosis?? Help with blood results.

hi. I’m new to this forum so please bear with me. My late mum had this condition as does my sister. I was always regularly anaemic but had blood test results...

hi. I’m new to this forum so please bear with me. My late mum had this condition...

Anon2023

•2 years ago

8 Replies

help with iron blood test results

serum iron 21.8 umol/L (9.0-30.4) Serum transferrin 2.26 g/L ( 2.50-3.80) Unsat iron binding capacity 57 umol/L (45-81) Transferrin saturation index 38%(...

serum iron 21.8 umol/L (9.0-30.4) Serum transferrin 2.26 g/L ( 2.50-3.80) Unsa...

G172125

•2 years ago

1 Reply

Possible Hemochromatosis?

Hi all Been experiencing lots of symptoms since 2018 that have got progressively worse.. did a couple of fasting iron panel tests on Thriva, first one Sept...

Hi all Been experiencing lots of symptoms since 2018 that have got progressivel...

ktan49

•2 years ago

12 Replies

Raised Ferritin Levels

Good Afternoon - I am wondering if I might ask for some help with regard to my Raised Ferriton Levels please - I was taken ill in August 2021 with severe...

Good Afternoon - I am wondering if I might ask for some help with regard to my R...

Lemondrizz1

•2 years ago

18 Replies

Iron panel result

All my results are within the ranges except UIBC. I showed the result to a doctor and they said everything is fine. Should I get a second opinion? IRON:...

All my results are within the ranges except UIBC. I showed the result to a docto...

GHLen

•2 years ago

2 Replies

Venesection and flu/ covid vaccination

Hi all I've started my first course of venesection and am thinking should I postpone my vaccinations until they are finished. I'm having venesection every...

Hi all I've started my first course of venesection and am thinking should I post...

De8813

•2 years ago

3 Replies

venesection

advise please i have just had my third session and i am finding i feel very light headed and dizzy the afternoon of the procedure and completely exhausted and...

advise please i have just had my third session and i am finding i feel very lig...

alfiepdoodle

•2 years ago

4 Replies

Advice please?

Hi 61 year old male in UK. Had a blood test a couple of years ago, which revealed elevated Iron. Not sure of the number. Just had another test which...

Hi 61 year old male in UK. Had a blood test a couple of years ago, which rev...

knackersyard

•2 years ago

9 Replies

liver biopsy

I have h63d homozygous haemochromatosis with raised ferritin and santuration levels i have had liver function tests and an ultrasound of liver spleen etc but...

I have h63d homozygous haemochromatosis with raised ferritin and santuration lev...

alfiepdoodle

•2 years ago

9 Replies

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Posts - Haemochromatosis Society UK | HealthUnlocked

Haemochromatosis Society UK

Newly diagnosed with Hemochromatosis

homozygous, so I have the 2 copies for H63D. I’ve had a thought 💭

low zinc

Looking for advice for my husband

Elevated iron levels-advice please

Ferritin 13 2 degree heart block 11

Test results - haemochromatosis with iron deficiency?

Genetic test positive

positive test

Hemochromatosis?

newsue

Multivitamins

? Iron overload

Study: diet of dark green leafy vegetables reduces ferritin

High level of Ferritin after Venesection?

iron infusion

Compound varient

Fibromyalgia

Ebeneezer

Hemachromatosis

Diagnosed as Compound Haemochromatosis

haemochromatosis?? Help with blood results.

help with iron blood test results

Possible Hemochromatosis?

Raised Ferritin Levels

Iron panel result

Venesection and flu/ covid vaccination

venesection

Advice please?

liver biopsy

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