Stomach problems
Posted , 5 users are following.
Was wondering if any body gets stomach problems.
I have been diagnosed for over ten years but my doctors are quite ignorant of any information. For instance i have arthritis in multiple areas is that normal. I get occasional stomach problems you know aches and pains but because i have very bad health anxiety (is thst part of it, you know depression) for all these years and nobody to ask if these are all part of the illness.
Would some kindly person please tell me if they have any of the crap i have.
Many Thanks Heather
0 likes, 9 replies
suffolk_tony heather29740
Posted
Hi Heather,
Sorry to learn of your various woes. All our individual experiences with haemochromatosis are different, but having apparently suffered with rheumatoid arthritis for many years, I now discover it was, in fact, caused by high iron levels, and since regular venesections have returned these to normal, my joint pains have largely disappeared.
I also suffer with gastritis, this caused by many years taking non-steroidal anti-inflammatories for the "arthritis" and painkillers.
heather29740 suffolk_tony
Posted
Many Thanks for your reply.......Heather
dillinger heather29740
Posted
Hello Heather, I was diagnosed about 8 years ago. I also suffer from depression, I would not be surprised if the two conditions are connected.
sheryl37154 dillinger
Posted
Hi Dillinger - assuming you are male - how is your testosterone and Vit B12? Both affected by GH and cause depression.
Everyone with GH should have hormones checked as GH is a hormone thief.
heather29740 sheryl37154
Posted
Hiya in Scotland as far as i know you are just told you have haemochromotosis. I dont eat any red meat as it says on a form i got when first diagnosed it caused your iron to increase.
I have read on here about different forms of the haemochromotosis
i always thought it was just the same for everyone, so you find out something new every day.
Good Luck to every one and hooe you are all well...... Heather x
sheryl37154 heather29740
Posted
You should not have been told you have haemochromatosis if you have not had a genetic test. If you have had a genetic test, you can ask for a copy. You should also ask for a copy of all your blood tests. Sometimes, you have to be assertive. It is old information to tell you not to eat red meat (and greens, some say). If you end up with a low Hb, eat read meat because that is what no red meat causes. Just don't eat it every day, 3 times a day.
Don't rely on your dr (or nurses) for information. Search it out for yourself by avoid blogs that say you should buy something from them,e.g. curcumen/turmeric. Stick to medical research. Contact your country's haemochromatosis organisation (I am not sure that Scotland's is very informative - not knocking the Scottish - my husband is a Scot) so you should search further. There are still some myths that are being clung to.
The researchers from Rennes France are much more up to date and research more than just liver. You will end up with a lot more knowledge than you have now, and perhaps can educate your drs about it. We need more awareness out there.
heather29740 sheryl37154
Posted
I did get the bloods genetically tested my gp sent the bloods away. My gp got the results but knew very little about it so told me nothing.
I am quite sure if i went to the gp today (after being diagnosed 10 years ago) they will still be ignorant of any information.
Many Thanks for your reply and i will look for
DebzHomozygous heather29740
Posted
Hi Heather
I suffer from arthritis all over it seems, as it's new pain, in different places, b4 it was just long bone pain in my shoulders, both long bones in my arms, hips, lower legs bone and upper leg bones, now it seems anywhere on my body that has a joint, aches, sometimes constant or throbbing, sometimes, when I move to get up or just twist or turn, sudden stabbing pain, I assume it's pinching nerves which are being pressurized by the inflammation on most of my joints, by I also have ligament damage on the only joint tested so far, my right knee, my knee bones are being pushed apart, either from the ligament being torn and floppy or from the arthritis.
As toward your stomach pain, I have suffered stabbing pain and swelling, just below the last rib on the right side a few times, but it generally passes after 6-10 hours and doesn't return for ages, could be weeks to a month or two, or maybe I am just distracted by all this other pain?
Sheryl on this site is the best at giving advice and has the best knowledge, as far as I am personally concerned! So please listen carefully to everything she says, as she has suffered with it for over 9 years, her husband has a different strain to her I think, but she once gave me some very sound advice ( all her advise is sound ) and I will pass it on and please feel free to pass it on yourself, any illness should be taken to your doctor, do not mention hemochromatosis, just the new issue, let the doctor decide or relate it to hemochromatosis, not everything is related, I currently am going through the menopause, hemochromatosis and arthritis, a lot of theses conditions present the same, if you label them, so will your doctor! BEFORE I knew I had hemochromatosis my doctor told me to grow a set! He stated " Your going through the menopause, grow a set, every woman goes through it" I demanded full blood tests and had to self diagnose hemochromatosis through the MAYO CLINIC, I demanded the test, which came back positive, after nearly a year I am still demanding, and have now found out I have arthritis, but I had all these issues when I first went to the doctor. With Sheryl's advice and my demanding of tests from the doc, I now have 3 different issues, which all require different meds! Menapause, hemochromatosis and arthritis, so start demanding!
sheryl37154 heather29740
Posted
It is easy to find out if certain issues are related to haemochromatosis. Just google "arthritis and iron overload", "stomach problems and haemochromatosis", etc. Only read medical research to get the truth.
Assuming you are diagnosed with genetic haemochromatosis and are getting treated for it, i.e. venesections, your next step is to ensure you are being treated for the problems you have. That is, the treatments are the same as those who do not have haemochromatosis. These problems don't have to stay with you just because you have haemochromatosis, so there is no point getting hung up on drs who don't recognise or believe haemochromatosis is the cause.
I was the same, 1) because my gp did not diagnose me for 9 years of suffering until my hips broke up, and 2) I was so annoyed that drs were so ignorant. Having read lots of medical research, I now realise all I can do is ensure I am getting the vx that I need, and the individual issues treatments that I need.
Haemochromatosis organisations around the world are working hard at trying to make the medical profession aware of this disorder and educate them, and anyway you can help do this, e.g. by distributing brochures (from the orgs) would be most useful, until we educate these people. Perhaps you can give your dr one and put some in the medical centre.
A useful form can be printed off from the iron disorders org website, go to forms, select the top one, and print it off and give to your dr and anyone else who should be aware.