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 Ferritin level was over 900, well she sent me to our walk in centre for some blood tests, some how the ferritin had gone down but still over 300. Nothing more was done or said. I’ve now got a different GP and I find I have to chase round to find answers. He always seems to find all manner of information why not to test.
My paternal family suffered strokes, Grand mother was paralysed, dad died at 50, his sister 67. My mum had terrible arthritis of some sort, we’re not certain really what sort as she refused to go anywhere near the medical profession due to experiences.
I was diagnosed with SVT at about 52, not suffering much. Then 2019 I developed Peripheral Atrial Fibrillation, July 2021 T2 diabetes! I don’t know any of my family with these conditions but the strokes made me look for answers.
Having trouble with GP’s NOT listening to me or my questions frustrated me, so contacted the society who have been very helpful. My sister appears to be a carrier, young brother had it, sadly died last July, long story, hospital negligence but there maybe a bigger picture. So, with advice I went back to GP who finally agreed to a genetic test which shows me as ‘Compound’.
So, I’ve been away for 2 weeks and now I need to find a specialist in my area as the GP questioned me about ‘private health care’ 🙄 We do have cover but have an excess.
I’m hoping that venesection ‘might’ help my dratted conditions.
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Compound haemochromatosis is being more recognised as patients come forward needing venesection. 300 ng/mL is nearing the higher range for females without haemochromotosis and with most have target levels of 50 ng/mL.
Ferritin can be elevated with inflammation so if you are over weight or full of aches and pains or a cold it may not be an indicator of actual iron overload.
A diagnosis that requires venesection is more likely with an elevated ferritin and transferrin saturation %. Have you had an iron panel?
I had Iron studies. Ferritin was 190 14/12/22 recently 210 31/1/23 Transferrin: 14/12/22 2.30g/L 31/1/23 2.11 g/L
Serum iron level has risen, Transferrin has risen each time.
I’m concerned about having SVT, Peripheral Atrial Fibrillation, and NOW TD2 last 2 in the last 3 years. I’d like a venesection to see if it could improve the diabetes levels. I checked on the Haemochromatosis society which lists these conditions. I was a 999 with an HBa1C of 134 July 2021. On the heart medications my weight just went higher and higher in spite of reducing my meals. I think this isn’t unusual. Lost a lot of weight 2-3 stone which is great. Went low carb, my consultant endocrinologist is very very pleased, but I’m not in remission. It’s all a nightmare.
I can’t just go and give blood at the donning people, I’m a A Rhesus negative blood group as too risky I suppose.
Ps. ‘Aches & pains’ doesn’t H can be a cause of these. And tbh, I don’t worry about them taking blood from me, husbands A+ so could have had ‘blue’ babies, they were always taking blood samples!
A bit about the genetic testing for haemochromatosis. We inherit two copies of these genes, one from each parent. Generally speaking, people who have inherited two copies of the C282Y mutation are considered most at risk of iron overload. Compound suggests that your result could be either C282Y/H63D or possibly C282Y/normal. This means you have inherited two different copies from each parent. C282Y/H63D can overload but usually to a lesser extent than C282Y/C282Y and sometimes not at all, but it’s very individual. The only way to find out is to ask your GP for a copy of your results, which you are entitled to
As I’ve mentioned before on the AF group, the genes in themselves aren’t the deciding factor in your treatment, it’s the degree of iron overload.
Raised ferritin is not specific to haemochromatosis. Other conditions where ferritin is raised need to be ruled out or addressed. These include metabolic syndrome, fatty liver disease (NAFLD) inflammatory conditions like rheumatoid arthritis and liver damage related to alcohol consumption. Your liver function tests are important as are your current metabolic health markers. If you have any of these conditions, for example you say you have T2D and mention your weight, you may well meet the criteria of ‘Metabolic Syndrome’ and that could also be contributing to your raised ferritin.
The transferrin number as you present it isn’t particularly informative of anything. The important result is your transferrin saturation. This is given as a percentage. People who are overloading iron will have a raised TSAT. You’ll need to get a copy of your results from your doctor to find out. I’m guessing you had this test fairly recently. This will give a good indication as to the reason for your raised ferritin. People with untreated haemochromatosis typically have a high/very high TSAT and not just a high-ish normal or borderline result.
Haemochromatosis is not always to blame for any and every health condition. Most people who develop T2D or joint pain, or even cirrhosis don’t have haemochromatosis. The same risk factors for those conditions still apply, just the same as everyone else. If those are modifiable risks ie lifestyle factors, you don’t get a free pass on that, unfortunately.
Your GP should be ordering further blood tests eg liver function tests, CRP, hbA1c, cholesterol etc as all these can give a clue as to what else might be going on. It’s certainly possible to have haemochromatosis AND inflammatory conditions at the same time, but chances are that venesection alone won’t treat these other conditions. They will still need pro-active management.
Venesection is usually done in the haematology department as a day patient. If you meet the criteria I don’t understand the reluctance to refer you. Your GP should at least email your results to the local haematology department for an opinion.
It’s very unlikely that venesection will reverse your T2D. I suggest you look at Prof Roy Taylor’s work at Newcastle University, as he demonstrated that T2D could be reversed with weight loss, specifically fat reduction in the pancreas and liver, particularly if the patients hadn’t had the condition for more than about 8 years. If iron accumulates in the pancreas and damages the beta cells, unfortunately this is not reversible with venesection. Fat accumulation in the pancreas and liver CAN be reversed and this can improve insulin sensitivity. I suggest you look up Prof Roy Taylor’s work and see if there’s something in that approach for you.
I know you have a lot going on right now, and perhaps you have more urgent priorities but you really have to be your own advocate in this situation. Your GP sounds awful and maybe you’d be better off at a different practice if that’s at all possible.
I’ve consulted a Consultant Haemotologist, had MRI scan of abdomen, he also took bloods and still waiting for results to come.
I joined the Haemochromatosis society and been sent information. They said that there hasn’t been a lot of research into the Compound variant but have a lot of members who have some issues.
I don’t need to lose anymore weight as I’ve lost 2 1/2-3 stone and made no difference to my diabetes.In fact the numbers are erratic. Weight los only works for 25% of those who do that diet and my diabetes nurse said it’s mainly those who are very overweight. 🤷🏼♀️
I thought that my Diabetes might be linked to vaccination. I had absolutely NO SYMPTOMS, just wham, lost the ability to answer any simple questions etc, overnight! HBa1C 134🤷🏼♀️ I’m a rare blood group, A Rhesus Negative, can become allergic to things occasionally. There is no diabetes in my family. If there had been my youngest brother would most likely to have developed it, especially due to the heavy medications he was on.
I am keen to look after myself and look for any possible causes and problems because it is my responsibility and not the medical profession, whom I’ve not had good support from.
Good news I had today from my cardiologist my heart is fine👍🏻
You definitely need a haematologist’s opinion to confirm your haemochromatosis and perhaps begin venesection treatment. Its real benefit is preventing the long term consequences of iron overload and not so much treating what’s already going on. I really hoped it would help with my ectopics but alas no. C282Y/H63D people can and do overload, and it still has to be addressed. but once you’re in the system you’ll have regular blood tests and reviews and kept an eye on.
HbA1c of 134 is astonishingly high! My result from February was 29/4.8% and that’s what it’s been since my first hbA1c about 10 years ago. Two of my in-laws are T2D and it’s not a nice diagnosis, is it? I’m assuming you had your hbA1c tested as part of your NHS health checks over the years? A friend of mine is now borderline diabetic, possibly due to Covid infection (not the vaccine, he didn’t have it) and is now attending NHS classes. He was already keeping fit at the gym, started cycling during lockdown, walks every day and all the rest of it. Then he came down with Covid during the Delta variant. Was it Covid? Or would it have happened anyway? Some people are just unlucky, it’s impossible to know the whys and wherefores. These days the vaccine gets the blame for every ailment going, but in reality these are conditions are common anyway, and more so with age. I do think that a lot of people struggled to cope lockdowns, ate more takeaways, drank more alcohol, struggled with their families, lost their incomes, suffered a lot of stress, a lot of those things can lay the groundwork for all sorts of health conditions to take root, plus the difficulty accessing healthcare and routine health checks during the pandemic and beyond. So many risk factors conspiring against people really, with many unfortunate consequences. You can only do your best to take care of yourself and it’s still no guarantee of anything
Just wanted to add, yesterday I listened a podcast with Dr Nicola Guess. She is a researcher into T2D and someone whose professional opinion I respect. She did mention Prof Roy Taylor and his project and acknowledges that for some people with T2D that approach didn’t help. To summarise, it was more to do with beta cell dysfunction in that subset and not the accumulation of fat in the pancreas and liver. What she spoke about was way more detailed and complex, and TBH way above my pay grade to speak knowledgeably about any of it!
So perhaps iron did damage your pancreas function over the years. I believe all of us iron overloaders ARE at risk, and we don’t want to increase that risk if we can help it. That’s also why early diagnosis is so important in preventing these consequences. Sadly most people are diagnosed later in life if no other relatives are known to have it. I tried to encourage my sister’s daughter to give blood at the very least as her workplace had a blood donor scheme. She didn’t want to be tested for haemochromatosis because she “didn’t want an illness”. I did explain that having the genes isn’t an illness, but knowing that you have the genes you can prevent illness later in life. But they just don’t think about the long term at that age.
I have got appt with Gastroenterology in October 🤷🏼♀️ Haematology in September but we’re away so may cancel as not sure I need both. Talk to GP in few weeks see what she says. Kicked make GP into touch, at last lady GP has come back and I’ll finally get to ‘see’ her, not having done so due to Covid !
Had right carry on with getting blood tests, go to drs twice to be turned away because of no forms 😳 Being put in new medication fir heart it was required to have liver tested, which hadn’t due to the debacle 😳
That male GP sounded awful. Glad you can see someone better now. Very good you have your appointments. Might be an idea to reschedule rather than cancel completely.
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