anyone else here with the Compound varient?
CY282Y + H63D?
I have developed Peripheral Atrial Fibrillation,
T2 Diabetes and possibly NAFLD(non-alcoholic fatty liver disease.
Keep getting told my Ferritin and Trabsferrin are not big but they are very close to the measures in the ‘General Practitioners’ Quick Guide’.
I’m wanting to reduce my Levels to the suggested 50, but how and where???
Blood donation not an option due to the PAF and I’m 65 😤
Anyone got any suggestions, tips
Sorry I can’t advise you as I am not compound. The Haemochromotosis society Uk do have a telephone advice line. There is also a very pro active closed Facebook group, “haemochromotosis family”. You need to request to join this group but it’s well worth it. They are very supportive and knowledgeable. I hope you get some sound advice.
I am not clear what your concern is.
If your levels are normal albeit high in the range, still normal range, has your diagnosis been confirmed. .
Your GP can run some "iron studies" - simple blood test. That will give all the information you need.
Speak to your GP, don't try to self fix.
BUT if you have Haemochromatosis, then your local hosp will do venesection.
it's simple. Or should be.
Jig
🤣 Sadly not simple, which was confirmed by head practitioner nurse from the Haemochromatosis society. Compounds can load iron, albeit slowly. The conditions I have are a symptom of the blood disorder. ie PAF & T2D. Because I can’t get Medical professionals to see the whole picture, I can’t get them to take blood and looks like because of the heart condition it won’t happen 🤷🏼♀️ can’t donate because of the heart condition and because I’m 65!
My body cannot deal with iron and this then accumulates in all the organs deteriorating them.
So Simple’s it isn’t.
Hi LaceyLady,
Why won’t your surgery do blood tests?
My husband has high iron levels ( his were over 2000 a few years ago, caught ‘by chance’ on a blood test) he’s now down to 65 after diet changes and a bout of venesection, which stopped a couple of years ago. They’ve stayed around this level, but he’s just had to stay careful with his diet and avoids iron where he can. Drs say his levels aren’t concerning anymore, although still slightly high. He doesn’t have haemochromotosis and was still able to have venesection.
He also gave up alcohol completely. This was aiding the build up of iron.
You should be a candidate for venesection though…I can’t see why they wouldn’t do that for you?
Because I am a ‘Compound’ version and they are not looking at the whole picture, ie it is causing my heart and pancreas & liver issues. Blood glucose all over the place! I am suffering more episodes of Fast irregular heart rhythm and drug’s failing.
The medical lot are only looking at those with the C gene. I was told by the senior nurse practitioner of the Society that they have many members like me with Compound who are showing symptoms and problems but no one is addressing them.
High iron affects all the organs as it accumulates in them. The liver is the detoxification plant of the body, gets rid of old blood cells, processes all the drugs etc that’s put into it. The kidneys to cleanse the body of wastes.
Iron build up collects in these organs and destroys them eventually.
So why wait till your ferritin and transferring has really damaged the organs?
I was told by a the senior nurse at The society they have many Compound sufferers who ARE having many difficulties but at the moment NICE has put guidelines on hold till 2025/6!!
None if the professionals that I have PAID and GP are not listening to me.
I’m flummoxed by this….you have private healthcare don’t you - Can you try with them?
My husband has asked how high are your levels?
You have to be referred by a medical professional. If professionals do not believe you need a treatment you can’t get it.
What I’m finding is, the GP refers me back to the private consultant as he’s a consultant, one I’m paying. He is convinced he’s right and probably concerned about litigation 🤷🏼♀️
Bearing in mind I’m a woman, and we are different to men. Ferritin is 222 and Transferrin is 40%. I have the GPs guide and at top of the range. I am looking at preventative action as I’ve said, I have serious health concerns linked to GH.
Just seen my diabetes nurse and she agrees with me, the ONLY one listening to me.
oh dear….I am sorry you’re going through this.
Yes, my husbands was a lot higher than that, but like you say it is different for women. Fortunately even at my husband’s levels of 2000 ferritin and 58% transferrin it didn’t do any damage that he is aware of, it may have done if it continued. I assume you are doing all you can to not get it any higher with diet etc. I know my husband drinks a lot of milk to counteract iron and he avoids too much vitamin C, but I expect you know all that.
He was doing venesection for over a year.
So they’re just waiting for you to get worse with higher levels then?
🤷🏼♀️
This is was what I was told:
“The only treatment I can suggest, that may help, is some venesections. Whilst your Ferritin isn’t too high, we find that people with GH still feel symptomatic even if their levels are slightly elevated. As you know people with GH aim to keep their Ferritin at around 50 and their Tsats less than 50%!!”
But I can’t get anywhere 🤷🏼♀️
So, being a fully qualified Complimentary Therapist if 25 years looks like I’ll have to sort myself out. The slagging I’ve had to put up with. So look like I’ll have to use herbalism, acupuncture etc.
Hi LaceyLady,
All I can suggest for now, is try to not let it get any higher with diet, which is fairly easy to do. You can still eat food that contains iron, but you can counteract that with milk.
I hope things change for you and someone helps you,
As a Complementary therapist of 25 years I will be addressing my issues with Complementary and alternative therapy as it is obvious that no one wants to help me. I know there are lots of Compounds in this position as I was told by the Senior nurse at the GH! I do not understand this line many are taking.
There shouldn’t be any difference between C282Y/C282Y and C282Y/H63D when it comes to venesection guidelines. Or any other genetic configuration. It’s the iron levels that matter, not the genes.
When it comes to venesection, I’m afraid you have to be realistic as to what it can achieve. It’s aim is to prevent damage to the organs rather than reverse any damage that’s already been done.
If you meet the treatment guidelines, being a compound heterozygote shouldn’t make any difference whatsoever. I don’t understand why you are being refused treatment.
I agree. I only have one gene, I am not even double heterozygous and my doctor applies the same to me as if I were homozygous. There are mutations related to hemochromatosis that are only tested in some laboratories, so hemochromatosis can be diagnosed phenotypically. If you have iron overload, no matter what mutation you have ferroportin, transferrin, HFE (heterozy, double , homozy) or non-HFE, the only treatment is venesection. Unfortunately, there are still doctors who believe that you can only develop hemochromatosis if you are homozygous for C282Y, with all the negative consequences that this can have for the patient.
The important point is to determine what is a diagnosis of hemochromatosis. In my case, 1200 ferritin, 50% saturation and 90umol of iron in the liver at 38 years of age.
So you think it would not improve irregular heart beat and diabetes? There are NO NICE guidelines. I was told by head nurse that NICE were about to assess and then due to Covid, lack of staff they have suspended it and may not address it now till 2025/6 🤷🏼♀️
My understanding is that there are NICE guidelines already in place for haemochromatosis going back several years so I don’t know why the “head nurse” says there are none. What exactly is she the “head nurse” of?
To my knowledge, if the pancreas has been damaged by iron it’s unlikely that it will recover normal function from venesection treatment. I think that is quite well documented.
From my own experience of arrhythmia, I was having a lot of ectopics but I still progressed to having thousands per day and eventually I developed AF. I was already in maintenance and had a venesection treatment about 8 weeks before I had my first AF episode. My ferritin levels were well-controlled at that time . I also had several venesections throughout the pandemic. The haematology day unit remained open although there were fewer patients on the ward but the service certainly wasn’t suspended, although outpatient appointments were all telephone consultations throughout. So I really have no clue what this nurse is on about
If your recent cardiac MRI showed iron deposits in your heart, that is a condition that can cause cardiac hypertrophy and that is one thing that venesection can help with but it can be seen on the scan and you should have been told this if it applies to you. These scans won’t pick up microscopic iron deposits which may well cause arrhythmias. I know that there have been studies that show people with haemochromatosis are more prone to ectopics than the general population so I do believe there is a connection with arrhythmia. I hoped venesection would help but sadly not. All long term conditions are multi factorial, and it’s always a case of having several strategies in place in the hope that the little wins will add up
Think this is what he was referring to. The Haemochromatosis Society.
So, who knows what the agenda here with me in Berks is. Got appointment on Friday with GP and compiling a list of questions. Any suggestions would be gratefully received 💗
I take it you got the referral to Haematology? I assume it’s just a question of how long the waiting lists are at the moment. The thing about haematology is that they base their decisions to treat entirely on blood test results, specifically ferritin and Tsat. When I go to haematology outpatients for an appointment with the consultant I have blood tests 1-2h beforehand so that they’re available when I have my consultation and they’ll say “hmm… I think 2 venesections before your next appointment and we’ll see you again in 4/6/12 months” depending on my levels. As you’ve already had genetic testing and a liver MRI recently, they probably won’t need to order anything else. So that’s what happens at a haematology appointment! It’s always about the numbers.
I’m not sure my private results would be available to the NHS clinic. But they’d be able to access GPs.
Yes I think GP is finally going to refer.
You can take a copy of your private tests to your appointment.
Ah, but if I do that, they’ll reject me saying their not high enough 😤
You’ll very likely need to have blood tests on the day. At my local hospital they tell you to come in at least 1h beforehand so they have your latest results available for the appointment, although I would say 2-3h before as sometimes the results are not back from the lab in time. What your numbers were 3/4/6 months ago or however long it will have been since your last blood tests will no longer be relevant on the day of your appointment. Your numbers may be higher by then. A referral is a result at least.
Haematomchrosis update
high ferritin, low serum?