Diagnosed with HH in Sept last year..
Posted , 4 users are following.
Was diagnosed with HH in Sept last year and my first apt with consultant was in November, saw a registrar instead at appt and told that my levels weren't too high so they were just going to monitor me. Had another appt in January (last month) and saw consultant told I need around 6 venesections ( first one beginning this Friday) I told consultant that I was getting chest pains and shortness of breath and been seeing GP long story short told that it wasn't connected to the HH and do back and see GP again?! Last week I was sent into hospital by GP after having an abnormal ECG and I was kept in with suspected slight heart attack! I am awaiting more tests eg MRI scan whilst they see if any damage to heart, liver occurred due to HH as they seem to think its the HH build up caused it?? I don't know what to think and I am still having chest pain, breathlessness like never before, headaches and upper back pain and abdominal pain and I can't sleep each night have to sit up in bed. Sorry for the long story but not sure what to make of all of this and wondered if anyone has been in a similar position? Can't help but wonder if I had been given venesections sooner would this have happened? Any advice or thoughts would be much appreciated.
Thanks everyone and sorry again for the long tale!
1 like, 12 replies
Chris8968 Chelle69
Posted
ellen12819 Chris8968
Posted
Chris8968 ellen12819
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ellen12819 Chris8968
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Sorry Chris blame the fog, i thought Chelle asked me my numbers. We don't know Chelles stats ...
Chelle69 Chris8968
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ferritin started off at 299 but now 400 Sats was 61%
ellen12819 Chelle69
Posted
Hi Chelle69,
I am so sorry you are having a rotten time, I am sure they will get to the bottom of it all soon. It is a funny ole thing, some have lots of symptoms and low numbers others high numbers and no symptoms. Mine was found in June 2017 and I am having bloods tested to see if I am (they think so) in maintainance ( twenty venusections later). My breathlessness has just been diagnosed as chronic pulminary disease and they say is totaly seperate to HH. My thyroid is on meltdown and My joints hurt like a bugger but they could all be nothing to do with HH or everything to do with it. So this tells me the doctors are also feeling in the dark, trying the best they can to sort a horrible condition from what we may have got from some other problem. I dont know your numbers and am not sure it would help if I did. 😕 But you are not alone and there are many helpful and extreemly well read Haemochromatosis persons here that may shed more light. Rest up, do what ever it takes to be well and I will be sending some good vibes your way. X
Chelle69 ellen12819
Posted
Thanks Ellen12819
?I think that is thing here not enough known about the effects of HH by the Dr's etc Haven't even got any faith in the specialist anymore to tell you the truth as on the day I arrived for my apt which was 3 days before the heart attack I said to him that I had been feeling ill with back and chest pains and very breathless but he told it wasn't connected to the HH and to go back to GP as it doesn't sound very pleasant! Just hoping I will start feeling better after my first venesection tomorrow x You have had plenty of them I see having had 20 hope that it's helping you and your starting to feel better? Sending you happy healthy vibes back and thanks for your reply. Take care of yourself xx
Hope your doing ok?
sheryl37154 Chelle69
Posted
Hi Chelle - some more information would be helpful, i.e. serum iron levels, ts%, ferritin level, etc? what did the genetic test reveal, i.e. which HFE genes?
I went for 9 years of severe symptoms without diagnosis and in the last year had constant pain left side chest (felt like my heart was swollen and heavy). I also felt breathless while walking feeling like I was wading through quicksand and yawning, yawning like I needed more oxygen, among a lot of other issues.
After 9 years, my hips broke up and I was diagnosed with HH. My ferritin was >999 (their testing limit), TS% was not tested back then, and my genetic test revealed C282Y/C282Y. With venesections, the pain in my chest gradually dissipated. However, if my ferritin went up again, the chest pain came back. One night before diagnosis, it was so bad I sat up in bed all night too.
While I had been referred to heart specialists, they did not pick up the HH. Years later I saw a high level heart specialist and he gave me the best advice ever. He said, if there is iron present in the heart, they cannot drain it out, cut it out, etc. Just keep having venesections. He did refer me to a special heart MRI which revealed nothing, but I had been de-ironed for a long time before that.
I now find I am best at ferritin of 34 or less. One time it crept back up to 80 because my haematologist tried me on 4 monthly instead of 3 monthly maintenance venesections. Chest pain and arrythmia returned.
However, iron is actually minuscule particles of sharp edged metal and autopsies have found that they cut through the cells on their way in and again on their way out, leaving minuscule scar tissue which is probably not visible in a MRI.
At least you are going to have an MRI of heart and liver and that is the best thing going at the moment. As you have not yet been de-ironed, it should reveal if there is any iron deposits in heart and liver. Still, the only effective treatment is venesections.
If your problems are caused by something else, hopefully they will discover what that is and treat accordingly.
Then you will know if earlier venesections would have prevented it or not.
sheryl37154
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Chelle, I see your Iron Studies results now. When I opened this page, it showed no other responses, so I thought I had better provide one. I don't think you said what your HFE genes were.
There is a lot of research done and known about HH but the drs are not reading it. We have to do it ourselves and inform them. I had to take some research study about HH and the heart to the heart specialist to ensure I did not get fobbed off. However, all the years I was not diagnosed, google did not exist so I could not help myself. Google came about the year I was diagnosed and I have availed myself of it ever since.
Look for research by Prof Pierre Brissot, Rennes, France who is the current leading researcher of HH and looks at a number of issues caused by HH. Also Prof John Crowe of Ireland, Prof Paul Adams of Canada, and there are some leading researchers in Australia. There is a Scottish prof in Belgium who studies the affect of HH on the brain. A study by Australian researchers has revealed a finding that venesections on low ferritin levels of those who have just been diagnosed with genetic haemochromatosis as being beneficial, and not to leave it till it gets higher.
Chelle69 sheryl37154
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Thanks for providing all your information and advice, so kind of you. I am C282Y/C282Y the most severe I believe. I just had my first V section on Friday, having my second in a couple of weeks. I just feel that if I had been venesectioned sooner then maybe having a slight heart attack could of been avoided?! I’m Just still really scared and think it’s going to happen again especially at night as I have to sit up in bed with the chest pains and can’t sleep for it, but not sure if that’s the Statin tablets I’m having to take as well as tablets for high BP. I’m just getting bad headaches too as well as stomach pain and it’s always worse at night for some reason, wish I could just sleep and not be so petrified every night that something nasty is going to happen and the breathlessness would go away.
How are you doing Shery? It sounds like you’ve been through it too with this nasty disease it’s so horrible and scary, hope your doing ok Sheryl. Take care for now
Best wishes xx
sheryl37154 Chelle69
Posted
Damage is usually caused by having a high ferritin for a long time untreated. I empathise with your fear. I would keep pestering your dr/heart specialist for treatment of your symptoms if I were you.
Try eliminating sugars and starches (that means potatoes, pasta, rice, too, and any vegetable grown underground, although turnips (urk!) and carrots are not too bad. Starches convert to sugar and cause fatty liver. I have also found research that reveals that we with HH do not digest sugars and starches, so perhaps eliminating them may reduce your abdominal pain. Find a bread that is mostly seeds. I am comfortable with one slice of Burgen soy & linseed bread.
Also we are prone to Helicobacter Pylori which causes abdominal pain, including ulcers. I was diagnosed with 6 duodenal ulcers. I don't have to take statin tabs nor do I have high BP. Ask for a test for this.
One of my hip replacements was botched so I suffer daily pain from that, sitting, standing, sleeping, walking. After 29 years, fatigue is still a problem for me - I have very short days and have to be horizontal by 7.30pm, sometimes earlier, if I have had a strenuous day. Just an outing floors me too. Memory is stuffed and I lose words so bad I am waving my hands about with no words coming out. I am not as bad as I used to be. Learning things used to come easy for me, now I find I cannot read or listen and keep focus, and I am trying to learn French. I was forced to give up work, which has made life easier, plus my husband being diagnosed with HL forced the issue.
We are also prone to cancer and I have had 2 tumours removed, one deadly, one low level, and a large melanoma. I have to keep being monitored (mri every 3 months and body scan once a yer) for the deadly one, and because of all the medical appointments we (my husband is H63D/H63D and is in remission for Hodgkin's Lymphoma) have, I have been lax on those checks. Plus a tumour on my pituitary gland which seriously messed up my hormones for 6 years until diagnosed. Iron does get into the pituitary gland via the hypothalamus where it also causes problems.
One good thing is my liver was unaffected, I don't have diabetes, nor fatty liver (must be the sugar/starch elimination I have been doing for years - not strict of course, I have to have a taste or two of my husband's cheesecake!), nor insulin resistance (just been tested). I just don't buy the offending foods and have them in my house.
Another affect of sugars and starches have on me, is almost immediately after consuming it I feel like a truck has hit me, I slump, slur, and want to become horizontal - the floor will do! Geez, I can drink a glass of red wine without those affects. A couple of weeks ago, I ate a whole white chocolate and cranberry (large) cookie and these symptoms occurred just to remind me to not do it again.
Good job I am not celiac - the results would have been disastrous. Besides there are good outcomes from eliminating sugars and starches - I found my waist again!
There is other stuff but it gets rather boring.
Anytime you want to find out if HH might cause a problem, google "...... and iron overload". You will get more research saying iron overload rather than HH.
Vit E and CoQ10, I found in some research to be beneficial for people with HH. They supposedly help with damaged mitochondria. CoQ10 is also good for heart problems - heart specialists know this, and lately on the news, drs were saying CoQ10 is helpful for people with diabetes.
Ask for your Vit D and B12 to be tested. Deficiencies in these can cause major problems. If deficient, buy a practitioners brand of Vit D3 drops, have injections of B12, and also buy a practitioners brand of CoQ10. You are wasting your money on cheaper brands.
I hope all this info helps you. It is gained from years of self experience (and my husband's) and reading research.
Chelle69 sheryl37154
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Thanks Sheryl for all your help and advice
love & best wishes to you and your hubby xx