Newly diagnosed, suffering and trying to find answers.
Posted , 5 users are following.
I am 47 years old. My story starts six years ago when I first got sick. Before that I was in great shape was a vegetarian and very healthy. I started having constant fatigue, brain fog,numbness and pain in my arms and legs.
I was first diagnosed with Colitis from a biopsy. My Gastro suggested that my symptoms were consistent with colitis. With a change in diet and medication I started to feel better.
A couple of years later the same symptoms came back again and after trying to treat the colitis again my DR did not believe it was that. Again blood tests were all good. He sent my for a sleep test and it turned out I also have sleep apnea. So I started using a CPAP machine and again started feeling better.
Last year I had a routine blood test and my Ferritn was around 600. We did a follow up a couple of months later and it was still high so we did a bunch of tests including a Genetic test for HH. Now keep in mind I was not having any symptoms.
In early January, I got the news I had tested positive for both genes and have genetic HH. I was sent to a blood clinic and since my levels were around 600 and I was not having any issues I would start with Monthly Phlebotomies to deiron. Heart and liver both tested and no damage either.
Sure enough 2 weeks before I started my first phlebotomy I got sick, extreme fatigue, muscle cramps from head to head. Much worse them every before. We tried my Colitis medication but I do not this it is that as my stomach is fine and that did not help.
It is 2 months later I have had 2 Phlebotomies and still feel terrible. My Doctor does not think it is the HH since my levels were not that high and is having me see a rheumatologist about fibromyalgia. He put me on Elavil in the meantime.
Is the HH finally catching up with me? Am it having a reaction to the Phlebotomies?
I am missing work, can’t leave the house and am very confused.
1 like, 4 replies
sheryl37154 stephen25002
Posted
Autonomic neuropathy can cause similar symptoms to what you have described, including digestive and sleep apnea issues. I will leave it for you to look up details.
Please also ask for your Vit B12, and vit D to be checked. Deficiencies in these can cause significant health issues as some of us just cannot absorb them. Injections of Vit B12 and Vit D3 drops may be necessary and tablets do not work for some of us.
300 is the highest reference level for ferritin for males. It is generally better to be de-ironed to about 50 in the first instance and more frequent venesections may be necessary to begin with then you can settle into maintenance of every 3 months.
You say you have both genes - are you C282Y/H63D? Same as my son. He started off weekly venesections when his diagnosed ferritin level was 772. My husband is H63D/H63D. What is your TS%? This can be significant when first diagnosed.
You are not likely to have a reaction to the phlebotomies unless your Hb is low. Being a vegetarian, this is quite possible and you may not be able to have more frequent phlebotomies.
Your symptoms are not exactly normal, and they should be investigated further. Good luck with it. You have to do some homework and educate yourself on HH so that you can educate your dr in order to ensure you get the appropriate treatment.
allaroundanne stephen25002
Posted
Hi Stephen, I am a female doc from the US who has HH ( C282Y/C282Y) and my major symptom has always been the arthritis which has been shown to be completely unrelated to your iron levels. The easiest way to explain this is, in the same way the gene for blue eyes is usually tied to the gene for light hair color, the gene for HH is very frequently tied to a gene for an inflammatory type of arthritis. Indeed, there is currently a clinical trial running in France right now that is testing an anti-rheumatoid drug on HH arthritis patients with great success. You do need to get your iron levels down for multiple other reasons, but don't expect that to make your aches and pains to pass. You really need to be seen in a pain clinic, get some xrays of your affected joints to see how bad your arthritis is and get started on something for pain relief. I get terrible muscle cramps too from the HH and needed a muscle relaxant along with pain meds. My arthritis was mainly spinal and I have had numerous epidurals, facet blocks, that sort of thing and have finally ended up with a spinal cord stimulator which has really solved the problem. I no longer have any pain issues from the waist down. We are now dealing with my neck, which is also as much of a mess as my lower spine and I may end up with a second stimulator. So, yes, your symptoms are related to your HH, but not to your elevated iron. It's very frustrating to have to go through all the phlebotomies I know and not have them make you feel any better. Your HH is in a way catching up with you in that the arthritis is a progressive process over time. I would also suggest taking egg shell membrane 500-1000 mg a day, it works the same as the anti-rheumatoid drug without the side effect of harming your immune system. It will slow the progression of the arthritis.
Lynn
bruce97898 stephen25002
Posted
Your symptoms sound like classic HH. Normally they will want to bring your ferritin levels down before looking for other problems. Your physician may not be experienced enough in it to know that you can't underestimate the effects of elevated iron.
I always tell people that diet is important to how you feel while getting phlebotomies. Both the iron and the phlebotomies can take a toll. Avoid processed sugar and flour. I started following a diabetic diet plan and I felt rested again.
bruce97898
Posted