Joint pain
Posted , 4 users are following.
Hello all,
My ferritin is currently at 37. I have managed my hemachromatosis for the past 3-4 years with phlebotomy as needed. At its highest it was 602. My ferritin during this time of management hasn't been over about 80. Most of the time its under 50. All that said I seem to have joint pain in differing spots. Does anyone else have anything similar where ferritin has been good for a while, phlebotomies are good, diet is good (no alcohol for example) and yet have ongoing joint pain? Thank you for listening.
0 likes, 6 replies
Cebby78 abookreader
Posted
I was only diagnosed last year at age 40. When I was diagnosed my ferretin was only 264 but I had sought out medical attention because I was in so much pain with joint pain in every single joint in my body that I thought, this can't be right! My ankles, knees, hips everything hurt. The thought of getting down on the ground from standing send shivers down my spine. And I am a healthy fit person. Not over weight, I eat well and don't drink too much alcohol. over night I developed tennis elbow in both my elbows.
As soon as I started venesections the aches and pains started to dissipate and now 1 year later I am finally able to start running again. I still have unexplained pain in my hip but I'm working on that (I actually do think thats due to "getting older"!) My ferretin, I think, is around 50 but I'm due for another blood test next month.
Everyone is different and there are lots of things that can be done to assist with Joint pain other than the standard take some anti inflammatory. I also see a osteopath who knows I have HH and he gives me stretches and exercises to do that ease my hip pain immensely.
abookreader Cebby78
Posted
Thank you for sharing.
sheryl37154 abookreader
Posted
Unfortunately it is reported that joint pain does not go away with vx. After reading "Nothing Boring about Boron", I bought some capsules from a compound chemist for both my husband and myself. My husband had been complaining about hip and knee pain for a long time and diagnosed with some arthritis. (He also has GH.) I did not tell my husband what the boron was for but in about 3 weeks he was no longer limping and complaining. I still get bone muscle pain but I don't have arthritis especially when fatigued which is most the time!!!
However, my hips had broken up from avascular necrosis after 9 years without diagnosis of my GH even though I was in severe pain and staggering and slurring with fatigue. So I did not get off scot free. The hip replacements cause their own pain because of botched surgery.
Also make sure you are absorbing Vit D - not everyone does, including myself. Tablets did not work, so my gp put me onto a practitioners brand of Vit D3 forte drops and my Vit D3 elevated straight away according to blood tests.
abookreader sheryl37154
Posted
Thank you for sharing
Cebby78 sheryl37154
Posted
HI Sheryl!, Just checking, when you say not everyone absorbs Vit D, do you mean not everyone with GH or not everyone in general? Thank you 😃
sheryl37154 Cebby78
Posted
Hi Cebby, I have not come across any research that proves that this only applies to those with GH. My husband who also has GH cannot absorb Vit B12 and must have injections. This problem appeared after he was diagnosed with GH, then Hodgkin's Lymphoma, but he absorbs Vit D.
The symptoms of B12 deficiency was very severe but took a long while for the dr to think of it, and may be more associated with the HL, or perhaps age, as it is more common than one knows.
I think I suffered from symptoms of Vit D deficiency as a child but not as far as rickets, even though I lived in the tropics where there is lots of sun all year round.
Having said that, I just googled "Vit D and iron overload" and there is some research on it but it is difficult to get a simple conclusion because it is subject to a lot of ifs and buts. Under certain circumstances it reduces Hepcidin which increases iron absorption, and under others it can reduce the absorption of iron in the intestines. I know there are a lot of professional and exceptional researchers out there who are trying to find the magic solution to "curing" GH, but obviously this is not one of them or they would be shouting it from the rooftops.
My gp tested me when I was forever complaining about my aches and pains associated with GH, and I was found to be very low. I can't really say that my aches and pains have gone (and today they are present), but on reading about the benefits of Vit D, I am going to stick with it. I might be a lot worse without it.