Posted , 4 users are following.
hi all, I was diagnosed with the c282y and h63d gene for haemochromatosis.
can someone confirm for me without my parents having their own tests done yet...
have I got one of the genes from my mother and one from my father making them at the very least carriers of haemochromatosis.
is it vital they have their own test even if not displaying symptoms. They are in their mid 60's
any advice appreciated
1 like, 14 replies
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sheryl37154 lisa96705
Posted
allaroundanne lisa96705
Posted
Carriers actually can display symptoms and have higher rates of heart disease, cancer, and arthritis recent studies have shown, particularly males as they don't have monthly periods. However, since your parents have made it to their age without any symptoms I don't see any reason why they should do anything other than get their iron profiles done. I can give you an example in my own parents. One of them, my mother carries the arthritis gene that attaches itself to the hemochromatosis gene and she's had both hips replaced and is looking at a knee replacement. My Dad just has the hemochromatosis gene, C282Y without the arthritis gene. So, carrier status doesn't mean you are free from any problems, I have been looking into it as all four of my children are carriers and I was dismayed to see the recent findings.
lisa96705 allaroundanne
Posted
Thank you for your reply, I'm interested in this as my mum has fibromyalgia and knee problems, and my dad has recently had cancer and has had heart attacks from an early age. He has stenths now.
my first thought was does my mum actually have f.m at all or could she too have hh.
I have a rheumatology app next week and would like to find out more about the joint pain I have especially in my hands and feet and as you have sad, that's more to do with arthritis than specifically hh..
allaroundanne lisa96705
Posted
Hand arthritis is a VERY common HH symptom, hopefully your rheumatologist will realize this. I am not sure where you are, but in the states HH is an uncommon disease and docs just aren't up on it. When I first came down with my spinal arthritis and muscle cramps I got sent all over, including Cleveland Clinic- a number one medical center. The arthritis group had no idea and gave me the diagnosis of exclusion, fibromyalgia, suggested I take up meditation and go on an antidepressant. It's sad how uneducated our docs are. I am lucky I am an MD and can educate myself, now before my appointments I arm myself with all the latest studies before I go in. You will need to make a decision, do you want to be on that rheumatoid drug,Anakinra, which blocks the particular inflammatory chemical that builds up in us interleukin 1L beta. As I said in my earlier post, this drug does come with all the same side effects that the other rheumatoid drugs do because it diminishes your immune system. I chose not to take it because of that. And, believe me my arthritis is bad, I have a spinal cord stimulator in my lower back and am looking at one for my neck. But, I catch every cold that gets within 5 feet of me. My GP and I decided that I would probably die an early death from pneumonia if I took that drug. I accidentally found egg shell membrane works on the interleukin 1 L beta too, just not as strongly and have been taking 1500 mg a day to try to stop progression of my arthritis. I also put the three of my kids who are in their 20's but already complaining of arthritis on it too.
lisa96705 allaroundanne
Posted
Oh dear..I don't relish the thought of taking that...I also have chronic asthma and often end up on steroids...the last attack I had I ended up in hospital, do I need to avoid catching any chest infections or colds that are around.
I also suffer from a huge list of allergies of which I now take a ruck of things for...one of which is fexofenadine 180mg a day which seems to be helping for now.
Do you have any idea if allergies are triggered by anything to do with hh.
allaroundanne lisa96705
Posted
sheryl37154 lisa96705
Posted
lisa96705 sheryl37154
Posted
Wow, thanks sheryl...can you remember where you've read that or what you searched for please.
sheryl37154 lisa96705
Posted
I was diagnosed with 6 duodenal ulcers in my early 20s and years later when the scientist discovered HP, I asked to be tested and was positive. I have had it about 3-4 times and treated when confirmed. Somewhere I found that HP thrives on iron, as does cancer.
I was searching for a solution for my husband's constant phlegmy throat and cough. I found a possible cause being HP. My husband was given an endoscopy and it was found that he had HP. (The dr was not looking for HP which can be tested for by a breath test). The treatment involves quite strong antibiotics - 4 lots of medication in one package. A couple of years later, his phlegmy throat and cough is back. I think we are passing HP back and forth to each other. (He also has haemochromatosis).
I can't find the website but there are a number of items when you google "allergies and helicobacter pylori", "phlegmy cough and helicobactor pylori". Interestingly, one claims that HP keeps asthma at bay. It also makes us anaemic - well eventually, as the bacteria is living off our iron - but a lot of bad stuff is happening to us in the meantime that we don't want to live with. A lot of them sound like symptoms of HH!!! Maybe we should all be tested for HP as a matter of course when we are diagnosed with HH. The anaemia mostly affects children though, as they are not yet overloaded even if they have the HP gene.
HP reduces our immune system in any case, as does HH anyway. I think it is well worth a test for HP.
sheryl37154
Posted
Sorry - The anaemia mostly affects children though, as they are not yet overloaded even if they have the HP gene - should read "HH gene".
allaroundanne sheryl37154
Posted
That's very interesting Sheryl, as I said, I come to find out everything that happens to me is related to my HH. I had an ulcer way back before they knew about HP, they thought it was stress related ( I was in med school). My Dad, a carrier, also had ulcers. So, we are having the symptoms of allergies but it is actually the symptoms of an HP infection that we are truly experiencing? I did notice that none of the over the counter meds that I took particularly worked on my symptoms so I just started living with it. I will ask for an HP test at my next GP visit. Thanks for the info!
sheryl37154 allaroundanne
Posted
When I was in my early twenties and complaining of ulcer pain, the attitude was that only alpha males in highly stressed management jobs got ulcers. So I was ignored, my gp said I had housewife's neurosis (assuming I had nothing much to do except get neurotic about my health and in actual fact, I was working full time and had a young son - I never went back to her).
Rather than dr shop again, I asked my husband's dr to write a referral to a gastroenterologist in my nearest capital city, looked in the phone book and picked one who practiced in a top facility, flew down, and he did both barium meal, enema, and endoscopy and found the 6 duodenal ulcers. It was years later that a medical scientist in Australia found that it was a bacteria that caused ulcers.
sheryl37154
Posted
I have just found a research paper titled "Laryngopharyngeal reflux and Helicobacter pylori" which may be relevant to my husband. However the treatment is PPIs and they have not been successful for him. They say "It is reported that the microorganism may exist in paranasal sinuses, tonsils, adenoids and even middle ear mucosa". However, they also go on to say that other studies, HP could not be found in tonsils, adenoids, dental plaque, saliva, or the oral cavity.
In the conclusion, they say HP is found in many sites, including laryngeal mucosa and interaryenoid region ...
haircrazydaisy lisa96705
Posted
Just seen your post about allergies. I have a huge list of them, too. Could be coincidence but ....