I’m doing a lot of thinking about my PAF, T2 diabetes and parental inheritance and cause of demise. Why? Because I’m a trained Complementary Therapist of 25 years, maybe I should have been a researcher 🤷🏼♀️ I’ve taken responsibility for my own
health over the years and want to ‘live’ till I’m ancient 🤣
I found my father and his family had Haemochromatosis, a very serious blood disorder, we are Irish origin and it’s the Celtic population. Now, I’ve heard the excuses so not interested in exploring them.
However, I find I may have inherited PAF and now I have TD2 and I don’t know why, no symptoms as far as I know, not inherited, but…. AF and T2D can be symptoms for Haemochromatosis!
Any thoughts or info welcomed. I love learning.
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LaceyLady
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In defence of GPs (and note I am not usually one to do this) they are, by definition, General Practitioners. That means, medically speaking. they are jack of all trades but master (or mistress) of none, and certainly will not have the time to spend hours researching rare medical conditions as they arise , unlike well informed literate and numerate patients. The best you might be able to hope for therefore is that they have a keen interest in the particular condition you present at the time. They should however be prepared to listen to any logical and fact based opinions about something of which they might not be aware of, especially if it is relevant and may be useful to them as health professionals, and not dismiss those opinions as not counting for very much without due consideration. And of course if you strongly feel you have been unfairly dismissed by your GP you can ask for a second opinion.
Hi, not quite sure why you’re having a go at me. GPs do hate patients looking things up. I’ve gone through various conditions that all flared up within the last few years, I’ve been right with anything I’ve pursued that they haven’t.
I think I’m old enough to have an opinion without being had a go at by someone on a forum that’s supposed to be a support system
Oh dear. Why do you believe I am having a go at you? There was nothing personal or criticizing in what I said aimed at you, and certainly no intention to offend. I was just picking up on something you said by making a general point about GPs.
Hi, apologies if I misinterpreted your reply, it came across in a way you were lecturing me about what a GP is and does.
My GP hasn’t been too bad, but I have to push and prove, it’s cost me a fortune. Anything I’ve done I’ve proved I’m correct, whereas they’ve fobbed me off. An example, a CPET back in July showed heart issues, but the person conducting the test wasn’t a medical doctor, they were a sports science doctor so could only comment on the actual test results which even to me indicated heart failure. I sent these to GP and no comment. I found a cardiologist that specialised in interpreting CPET results in another part of the UK and he wrote to the GP that my heart was working at only 54% and indicated heart failure. Then GP referred and with a mixture of other stuff waiting for a DPD scan via a local cardiologist.
I had blood tests for allergies last week, but only at the request of a dietician. GP has known for years about hayfever, eczema, etc., yet it’s the first time test and high for airborne allergies. Although he might not be happy I’ve never mentioned to a dr the last time I got stung my whole arm swelled 🤣 I can hear the sigh already 😂
I’ve written these examples in case it helps anyone else to push if need be.
Thank you, it doesn’t work. I suggested to them they’d been medically gaslighting me in 2019, just said they hadn’t and sorry it came across that way, type stuff. Thought about changing but they all seem to be the same.
I think there is an understanding 🤣 when they received the letter from the cardiologist the referral was done the same day.
My main bugbear with GP or any doctor that’s in charge, they can make any changes they want. If they had a day once a week and spent 20-30 mins with patients and long term conditions it would save so much time in the future and believe straight away what a patient is telling them, or at least attempt to.
Yes, agree. My GP picked up on my blood test abnormalities that had been consistently abnormal over time and emailed the results the haematology. Within a few weeks I saw a consultant who ordered more tests, rang me back me on the same day to say that my iron levels were too high and arranged genetic testing. This wasn’t about symptoms or trying to convince my GP about how I felt, or anything like that, this was all done with tests.
I agree about sticking to reliable sources of information. There’s too much health misinformation online, too many ridiculous diets and food myths, too much hype about supplements, scare stories about how this or that is “toxic”, too many grifters pushing their latest fad diet books, and on and on. There’s plenty you can do for yourself that costs nothing or very little, like staying properly hydrated or getting to bed half an hour earlier, switching off screens before bedtime, or going for a walk.
I have a Gp who seems very knowledgeable and passionate but I have a hard job getting a word in edgewise 🙄 Rather over confident. Last time I was ready for him and didn’t let him completely get away with it, but it was hard!
I’ve been ‘dismissed’ by my fairly good male GP. Now my son gets what he wants and needs from the same GP, so it us not unusual for women and ones of a certain age to be treated as Moon-Maiden says 🤷🏼♀️
Oh definitely, yes. There is a tendency for women not to be taken seriously. When I was young, I was discriminated against for being, well …. a young woman, And that persisted well into the menopause years. Not that long ago I was told by a younger female GP that my 24h ECG results were “fine” and “nothing untoward going on” in that awful sing-song voice some of them put on when being dismissive, only to ring me back 5 minutes later to say “well, actually…. there’s a few things here that aren’t quite right” but thanks to her meddling I had an outpatients appointment cancelled, and it wasn’t rescheduled. So I then had to be re-referred by a different GP, all during the worst of the pandemic when appointments were like gold dust. She’s left my surgery now, but she had a terrible attitude
On the other hand, I saw a lovely woman GP last week for post-menopausal symptoms and she told me “don’t suffer in silence!” Being an older woman herself I think she knew too well that many menopause related symptoms are brushed under the carpet. So I agree, there is prejudice there and I have known men to seek help for the same problems I have had (not menopause obviously!) and they get referred to a specialist immediately! It’s really down to pot luck and if you get a prejudiced one, there’s not much you can do. Their mindset is fixed.
I won’t take it lying down, I’m a qualified Complementary Therapist of 25 years and my anatomy & physiology is better than some nurses, which I mentioned when my GP was being a bit condescending 🙄
It definitely helps to learn some assertiveness skills. When I was in my 20s there were several books in the library about assertiveness for women. Whatever happened to that idea? Essential skills, for everyone. There is too much prejudice in medicine, whether it’s ageism, sexism, weight discrimination. I was referred to a bowel & bladder service and as it was the pandemic it was telephone appointments only. The nurse spoke to me like I was a 5 year old. I’m sure the average age of referrals is more in the 75+ range, but even so, it’s not as if we turn into little kids again on the day we turn 50 or 55 or 65 etc. That was my first experience of not being spoke to like an adult and I was 58 or 59! Is that a taste of what’s to come? Are they going to start shouting baby talk at me??!! That was a revelation, I can tell you.
I don’t suffer rudeness, discrimination or ageism. One time I spoke to my GP, I’d got through the medical stuff and then mentioned the rudeness and condescending behaviour of the telephonist! Explaining when I worked at a life’s assurance H/O we answered the phone with curtesy and ‘how May I help you’. Next time I rang the receptionist did just that, but I think she was one of the better ones 🤷🏼♀️
Oh, I complained about her all right, not so much about her manner but because she prescribed a medication without prior discussion and which I would never have agreed to take. I thought that was a fairly serious matter but the hospital complaints response didn’t even admit to it and just gave me cliche after cliche about “we take all complaints seriously” and “we are sorry you were disappointed” and blah blah blah. If I wanted to take it further I’d have to go to the ombudsman and I thought I had wasted enough time on getting nowhere. I was passed on to another nurse for my next appointment who told me I would be referred on to a consultant but I never heard anything back from them, no appointment, no referral to a consultant, nothing. I told my friend that if I made a complaint, I’d probably end up being discharged and essentially kicked off the service. That’s exactly what had happened but I haven’t actually been told. I don’t believe I’ve been referred to a consultant, and there’s no more appointments either. So… that’s the formal complaints system in action. Yet that nurse was unprofessional in so many ways. She put all sorts of made up rubbish in her letters to my GP which are now part of my notes, and I’m also told that they can’t be changed. I have relevant family history for a neurological condition but she said I had a family history of something else which is definitely not the case! How can this even be allowed? I know there is a nursing shortage but how low do their standards have to sink to get one like her? Unbelievable.
Do they really treat “old ladies” like this, I wonder? I’m not 95! And even if I was they shouldn’t speak to elderly people like they are in nursery school. If this is a taster of what’s to come, well, what can I say? I’m not surprised some elderly people have a bit of an attitude if this is how they are spoken to.
I have haemochromatosis. I have inherited two copies of the C282Y mutation from each of my parents. I am treated by venesections to keep my iron levels down.
I had my first episode of AF 11 months ago. I’ve suffered with ectopic heartbeats throughout my adult life, although it started off with just the odd one. About 10 years ago I had my first 24h ECG where I had 200+ in 24 hours. I thought that was bad but then it became thousands every day, and then AF happened.
Iron can accumulate in the heart in people with haemochromatosis, but this is considered to be late stage iron overload in untreated/undiagnosed cases. However ….there is a study which I read recently that showed that people with haemochromatosis have a higher incidence of ectopics and irregular heartbeats than people without haemochromatosis even when scans of their hearts do not show any obvious iron deposition. I’m not sure if AF specifically is connected with haemochromatosis or whether it’s just not been researched yet. Cardiomyopathy is a complication of iron overload, though.
The pancreas is another organ where iron accumulates in people with haemochromatosis but this is also considered a late stage complication. Unlike typical T2D where there is a strong correlation with fatty liver and fat accumulation in the pancreas, iron deposition. can impact on insulin production through oxidative stress. Prof Roy Taylor of Newcastle University demonstrated that by “defatting” the pancreas and the liver T2D can be reversed in some people particularly within a few years after diagnosis. However, he did state that it would not be the case for people with haemochromatosis.
My own father died of what was almost certainly liver cancer and cirrhosis caused by haemochromatosis. The liver is where the body stores iron normally, and it’s most often the liver that becomes fibrotic, then cirrhotic and eventually become cancerous. At that time, the gene mutations which cause haemochromatosis were not known and it was also before ultrasound and MRI scans made early detection possible. My dad never developed cardiac problems or diabetes but his skin had a “tanned” look to it which was actually the iron being deposited in the skin.
My sister has haemochromatosis too and like me she has venesections. She has very bad joint problems in her hands and has the classic “iron fist”. I don’t have these joint problems at all. Not everyone has the same sets of symptoms. We both have low bone density though, and that’s thought to be due to more iron in the bone marrow (I think).
Of course there are many people who have T2D, cirrhosis, joint problems, arrhythmia etc and don’t have haemochromatosis. These are common conditions in the general population anyway, and people who do have haemochromatosis can still develop conditions that aren’t associated with iron overload at all.
I had abnormal blood test results that remained abnormally high after repeat testing. This was before the ectopics became a problem. I was referred to a haematologist who ordered additional tests and when they came back abnormal he ordered genetic tests. I have to add that despite venesection treatment, the ectopics didn’t improve and I eventually developed AFib, so who knows?
Thank you, certainly informative and interesting. Paternal grandmother had had strokes, father died at 50, strokes and I remember mum saying cirrhosis of the liver and enlarged heart, brain haemorrhage. His sister stroke 67. My youngest brother had Haemochromatosis, was that that killed him but hospital negligence in July, but I have his medical records from that hospital.
Be careful of blood tests ordered by the GP. My partner had the usual ones and they came back normal. It was only because he (I!) pushed as he felt so strange that he saw a consultant who found his ferritin levels were extremely high. He then had the genetic test which showed the chromosome C282Y - and he started regular venesection. He wore a holter for 2 days that showed a lot of ectopics and dips in heart rate at night to 40. But that isn't being treated.
yes! My lady GP phoned me late into the evening saying on of my blood tests was way high! She mentioned‘Haemochromatosis’, this shook me as an Irish friend warned me months ago and I’d forgotten it! Since been dismissed as ‘other’ blood tests aren’t showing a problem 🤷🏼♀️
The GP should order ferritin tests at least every couple of years. The ‘iron panel’ tests that measure TSAT % can be ordered by the GP but they won’t typically do that, and most people won’t know to ask for it. My T day is often around 80-95% and that’s a LOT of iron just in my blood. My sister has higher than normal haemoglobin but I never saw that in my blood tests until this year. I also have very high MCV, about 115-117 whereas the top of the reference range at my hospital is 98. I’ve had no stone left unturned in the investigations as to why this is, but my brilliant haematologist (now retired, sadly) said explained that in some people with haemochromatosis, the red cells take up so much iron when they are formed in the bone marrow and are therefore larger. He ran so many tests to rule out everything else, and then last year another GP said “this isn’t right” so haematology ran them all again and came to the same conclusion. My sister doesn’t have this, so it’s not everyone with haemochromatosis. We do have the same parents and we both have two copies of the C282Y mutation but haemochromatosis has manifested differently, and we’re nowhere near as badly affected as our dad who was the classic “worst case scenario”.
Earlier on, when my blood tests weren’t right and before people knew about haemochromatosis, I was tested for coeliac disease, which I don’t have, and then my blood was monitored for a year after that at the haematology department, but as there was no overall change they decided that nothing sinister (ie suspicion of blood cancer ruled unlikely) was going on and decided against doing a bone marrow biopsy (!!). So they did take these abnormalities seriously but as there was no real awareness of haemochromatosis at that time, they didn’t have any explanation. So things have moved on. In my dad’s time they didn’t even know about the genetic causes, didn’t have the DNA testing and didn’t even have the scans to see what’s going on in the liver.
Remember that high ferritin on its own doesn’t necessarily mean someone has harmochromatosis. High ferritin also occurs as a consequence of inflammation, it can indicate liver damage, and it can be raised in alcoholics. But in these cases the T sat will usually be normal, and where there is liver damage there will be other abnormalities that show up on liver function tests. If someone has high or high-normal CRP and high ferritin, that’s a sign of inflammation and other causes should be ruled out. Ferritin can also be high when people take iron supplements that they don’t need. Being a carrier of one mutation usually means that person won’t overload to a significant degree and most likely will not develop clinical haemochromatosis, but occasionally some do. It all depends on your iron studies as to whether you’re overloading.
BTW, venesections are no picnic! I hate having them and I put them off for as long as I can. I know that’s not very grown up!
years ago I had given blood, they liked my blood, A Rhesus negative. But the last time I went the useless person didn’t listen to me that one arm was better and a saga ensued😵💫
I’ll have to check my recent blood tests see what was included. I get blood tests every 3 months🤞🏻 because of the diabetes. I have a very useful consultant cardiologist, had him for years and I’m certain he’d help me get what I need, not adverse to telling the GP 😀
I think he was fortunate that the consultant took the next step of testing for the chromosome rather than trying to rule out other causes, as this was the only cause in his case. He does need yearly liver scans as he has multiple polyps. He's teetotal. Yes my partner would agree about regular venesection not being a walk in the park, I can't personally comment on that as I'm fortunate to not live with haemochromatosis 🙏
The haematologist I saw was brilliant, and rang me to say he wanted me to have the genetic test on the afternoon of my first appointment after he reviewed the blood tests when they came back from the lab. He was very thorough and ordered a liver scan straight away too. He retired around the beginning of the pandemic, and although I had venesections on the day ward throughout that period, all my OP appointments were with whatever doctor was available, mostly the newly qualified registrars and a different one every time. I had a lot of bruising and swelling after the last venesection and had to go back to haematology the following week, and they were very helpful and did scans and blood tests and were very thorough in ruling out any more serious complications, but the experience has left me a bit wary. Those venesection needles are so big too. I’ve been putting off having more venesections but I might ask for 250ml to be removed instead of the usual 500ml to see how I get on. So, it’s not all that great having haemochromatosis. I’ll have to be brave though. I can’t put it off forever.
I’m sorry to read that your partner has polyps. I have a couple of cysts but they seem to be considered benign. It’s so good we have the scans these days.
Yes, you can get these for free via your GP or consultant. Best done at a lab using a sample from the vein rather than one of those postal fingerprick tests. Ultimately you will need a formal diagnosis in order to have venesection treatment, if you need it. You’ll most likely need a liver ultrasound too. Your cardiologist might also want to order some scans to check for iron damage to the heart muscle. The blood tests are just the beginning, if you are found to have haemochromatosis the treatment and monitoring is lifelong. It’s not just a one-and-done thing.
My dad had haemochromatosis but I dont know what it is. Im not sure if my brother and I have it or are we likely going to inherit it. We are both in our 30's. As far as I know my dad suffers from copd and arthritis. Not sure is there are anyother symptoms from the haemochromatosis but then he may not tell us because he's stuuborn like that.
You both should get bloods checked. My mums blood group was A Rhesus negative, dad was A positive with D, this match can mean that the could be problems with the babies, blue baby due to the D factor I think. Guess what , I’m A Rhesus negative and husband A positive 🤷🏼♀️ So, I had to have an anti D injection after daughter was born. I do not know if husband has Haemochromatosis but don’t think so. I’m the Celtic link.
Check the Haemochromatosis link above, thus disorder is serious health disorder
There can be problems if the mother is Rhesus negative and her unborn baby is Rhesus positive.
It causes haemolytic disease of the foetus and newborn.
This causes severe jaundice in the newborn baby.
To prevent babies developing Rhesus disease, all Rhesus negative, pregnant women are offered anti D injections whilst pregnant and after giving birth if their baby is rhesus positive.
Just tried to pay for a genetic test using your link but it says that I’m not eligible for a genetic test because I don’t live in Liverpool!? The irony is that I was born and raised there and my ancestry is Irish!
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What are we doing wrong in the UK.
Why are my post not getting through?
Why do i feel like a Failure and a fraud
I think i might have AF. What to do?
Why do medical professionals treat you like your stupid! 
