Venesection for this with GH

[LaceyLady]

Is there a way of ‘blood removal’ if you have Peripheral Atrial Fibrillation? Or medication to assist removal of too much iron

[Captain_Birdseye]

Yes there is - there is information on the NHS website here

nhs.uk/conditions/haemochro....

[LaceyLady in reply to Captain_Birdseye]

I’m ‘Compound’ varient and GP keeps saying my Ferritin isn’t high but it’s now 229 and according to the GH booklet women should be below 200.

I’m having real problems getting GP to listen, got appointment Friday 🤞🏻

[Esentepe]

Hi, high ferritin can have a lot of causes. Haemachromatosis is one cause and is rare about 10 % of cases. Ferritin levels are also age specific. 200 or under is normal for women under 60, over 60 the limit is 260. Raised Ferritin can be caused by infection, inflammation, kidney issues, liver issues, some malignancies, diabetes, metabolic syndrome. With menopause ferritin levels increase. Venesection is only indicated for Haemachromatosis. There are drugs chelation if venesection can't be tolerated. I would suggest discuss with G. P option of a repeat ferritin, and other bloods such as FBC, LFT kidney function, CRP, ESR, if these are normal and ferritin still high then transferrin should be perhaps done. They have protocols to follow. This is just my thoughts I am a nurse but not offering medical advice. Hope this helps?

[LaceyLady in reply to Esentepe]

I do have Haemochromatosis, I’m Compound version. GH can cause Atrial Fibrillation, diabetes, liver, kidney issues due to loading iron which stores in the organs. No win situation. I mentioned ‘Chelation’ to the Society and was told its very expensive and a last resort thing 🤷🏼‍♀️ I have in the past 3/4 years developed PAF, T2D and need kidneys checked as per hospital visit and now got told could have Non alcoholic fatty liver disease to boot. My brother dec’d had Compound version, younger sister was told she’s a carrier but I think and a senior nurse thinks she actually has it too.

Levels per the Haemochromatosis are ferritin 200, mines 222, Transferrin 45%, mines 40% yes yes, I know, ‘not that high’ BUT I have the other issues which are a serious consideration.

I’m going to resort to alternative health treatments because I’m banging my head and I can’t afford that either being on an anticoagulant.

[Esentepe in reply to LaceyLady]

Apologies I read through the posts hastily and realised I hadn't read yours properly. You must be so frustrated. I am having similar issues so frustrating. I have AV block and a pacemaker and other cardiac issues. Mine is 465. Getting nowhere with my gp told its the menopause. I have other health issues as well, and high ferritin gets attributed to everything else.I am so sorry to hear about your struggles. I agree it feels like we are banging our heads against a brick wall. I can't believe you have been told chelation is to expensive. Feels like we are just numbers not people. The issue as you know is it will only get higher without intervention. The damage from iron overload can be so widespread and significant. The care from the NHS seems to have disappeared. I know some people are getting good care, but I don't see a lot of it.

It is so hard when we have multiple health issues. Just one issue is enough to deal with!

I have just being diagnosed with skin cancer on my ear and told NHS wait for surgery 12-18 months. I got this from years of treatment on a sun lamp as a child for psoriasis.

Apologies again for my mess up ad also for my rant. Your message struck a chord. Take and I would be keen to hear any updates.

Sarah

[LaceyLady in reply to Esentepe]

No worries💗 The heart issues and Diabetes and liver is connected to the Haemochromatosis, listed on the Associations site. They said I need some venesections and they like to see ferritin at 50!! But got codswallop from the person at the top😳 I’ve no idea what going on, just getting passed from one to another. The only thing going private has done is get the scans and blood tests I needed, no plan of action 😡

So, back to GP Friday with my list and determination. Also I found a Naturopathic doctor on line who has a site explaining about GH and herbal treatments, which I am using. I am a qualified Complementary Therapist of 25 years and know about the body. Ideally I really need venesections.

[Anon2023]

hi. I’m currently having tests for haemachromatosis after my iron levels went to 650. All of my other bloods are fine but I have a sister and mother with this condition so they are testing me. It’ll be interesting to see what your gp says on Friday. X

[LaceyLady in reply to Anon2023]

Yes hopefully it will! He’s been toeing the party line. 🙄

[LaceyLady in reply to Anon2023]

Oh, I previously had a reading of 934 Ferritin! That was dismissed as an aberration 😳

[LaceyLady]

I asked if there was a way to remove blood other than through the donation society