Possible Hemachromatosis (Self) Diagnosis?
Posted , 4 users are following.
Hello, I'm new to this group. I'm in the U.S.
In October 2017, i was admitted to the hospital with what turned out to be food poisoning. They did a lot of tests and one of them was Ferritin, which came back at 450 ng/ml. At a follow up visit with my primary care physician, a few weeks later, he restested along with many other tests and Ferritin came back at 487, Lab normal ref range says 30-400, but i've read everywhere that 300 is the upper end of normal. Other tests were all in normal range, except Lactate Dehydrogenatse which came in at 243, with normal ref range being 135-225. I read that this LDH can be a sign of organ or tissue damage.
I was referred to a hematologist who said it might be from the food poisoning, and i should retest in 4-6 weeks. I did retest, but waited until January, and Ferritin came back at 427, so better but still high. At the same time they did Serum Iron, TIBC, UIBC and Iron Saturation, and ALL CAME BACK IN THE NORMAL RANGE.
I have had stiffness in my hands for over 10-15 years, only in the mornings. But the last few weeks, my right hand seems to be stiff all day, and one of my knuckles is tender to the touch.
So after doing some reading, i am thinking i may have Hemachromatosis. I know i should not self diagnose and have an appointment with the Hematolgist on April 2nd.
I have a history of Prostate Cancer, was treated, but PSA has been slowly rising over the last 6 months, so i doubt i can donate blood.
I also have coronary artery disease, with 2 stents inserted 2 years ago.
History of high triglycerides, and fatty liver (because of the high TG, not alcohol). But i have had my TG under control for quite a while.
BTW. my liver tests all came back normal, ALT, AST, etc. Only serum Albumin came back high, and it was 5.0 with normal ref range 3.6 to 4.8, so just barely out of range.
Any comments appreciated.
I guess i just want to see if anyone who is knowledgeable/experienced, has any comments, suggestions, etc. I am quite nervous, and at this point, the last thing i need is another major disease to deal with.
0 likes, 8 replies
sheryl37154 Pratoman
Posted
Any infection (including a humble cold), inflammation, fatty liver, malignancy (benign or otherwise) causes high ferritin levels whether you have HH or not.
A ferritin level in the 400's is probably not too bad for all the health issues you have including food poisoning, and, I am guessing your age, given the prostate and the heart problems you have too (notwithstanding that young people can have these problems as well).
If you were found to have HH, that is an easy disorder (not a major disease) for you to deal with, better than other possibilities. The problems with HH arise when it has already damaged major organs before treatment, e.g. the liver, and your liver tests came back normal so there does not seem to be any worries there. Fatty liver is diagnosed by CT scan, it does not show in bloods, so I guess you have already been tested for that to know you have fatty liver. Although it is extremely common these days, and most people have it because of our modern diet.
To improve the state of your fatty liver, eliminate sugars and starches, high consumption of which causes fatty liver.
All the above does not mean that you should stop any investigations - just don't be nervous about it.
Research has found that CoQ10 is good for damaged mitochondria in the cells, and perhaps it would help with the tissue damage which shows as high LDH. You have had a lot of health issues that would cause a high LDH. Besides it has always been known to be good for the heart too. I have also found out how damaging low Vit B12 and Vit D is too.
This is all based on my personal experience which is 20 years since diagnosis, 9 years prior to that of major symptoms undiagnosed leading to osteonecrosis of my hip bones which lead to my diagnosis - homozygous C282Y, my husband is homozygous H63D, and our son is compound heterozygous C282Y/H63D. Other damage was also caused by this long delay of diagnosis and ferritin >999. But my liver was ok thank goodness! Since google, I have searched and read extensively research on haemochromatosis, talked to top international researchers at conferences, ran a support group, therefore talking to many people with HH about their various symptoms, etc., as well as medical students and doctors.
Good luck with it and let us know how you go.
Pratoman sheryl37154
Posted
Thank you Sheryl. I am age 67.
i lready take Coq10, actually in Ubiquinol form, because I am on a statin.
and I do my best to stay away from simple carbs. I limit myself to 2 slices of whole wheat bread a day.
what really concerns me is the stiffness in my hands. I feel like there is something going on that might be progressive. I am going to see the hematologist as I mentioned, and see what he says. I might call ahead before the appoint,ent and see if I can get him to prescribe bloodwork in advance, rather than wait for the appointment and then first have to wait for him to do bloodwork.
do you see any significance in the fact that the ferritin going from 450 to 487 then down to 421? Or is that just normal variation from lab to lab?
is it possible that I might already have organ damage with this ferritin level?
i have to admit I'm pretty nervous about all this. I have had a bad stomach the last few days and I am even wondering if that could be related to iron overload.
Hopefully my mind playing tricks on me.
trying to stay in control if it.
thanks for listening and again, thanks for your quick response.
sheryl37154 Pratoman
Posted
Hi Pratoman, even if you have HH, the stiffness in your hands may or may not be caused by HH. Besides, research has found that it does not go away with venesections, so your treatment will be unrelated to having vx. It could be just plain old arthritis which is progressive anyway and not HH arthritis which makes no difference anyway.
At first sign of arthritis in my pointer finger years ago (I am now 66) I rubbed on pure emu oil which I had read about some time before I had the problem. Now as I live in Australia, that is not hard to buy - maybe you might have to do a search in the US. Get the 100% oil, not the cream which has other stuff added to it and is not concentrated. The oil is so fine it gets right into the joints. I used it on and off as and when the pain reminded me. My fingers are still good, only when I put some pressure on peter pointer that I feel any discomfort.
Good idea to ask for bloods request first, otherwise days turn into weeks of waiting.
The variation in ferritin levels are a daily event really. They do not stay fixed. When I had a cold, mine went from 283 to 813, then 1.5 months later I was down to 63 when my haematologist threw in a couple extra vx, which in hindsight, was really unnecessary, as the ferritin level would have come down of its own accord, when the cold was cured. But drs did not know much about HH back then (and a lot still don't because they don't read the research).
From my personal experience and gained knowledge, any organ damage would not be related to a ferritin level in the 400s. You already have some (heart, prostate, stomach) from other reasons not related to HH.
It is a good idea to have Iron Studies every 6-12 months anyway, as they are a window to a lot of issues. A good dr would do them as a matter of course. There are four tests in Iron Studies - Serum Iron, TIBC, Transferrin Saturation %, and Ferritin.
You might think I am very casual about it, but I am not. I curse the dr who was in denial about my having HH all those years ago, and all the damage it caused because of 9 years of delayed treatment. And, I used to donate blood anyway. I ended up having to give up working because even though I am now de-ironed, the fatigue and body pain never went away. I had to have both hips replaced (and one was botched so that causes extra pain when standing, sitting, lying down, walking
, I had left side chest pain for a long time which dissipated with vx, but if my ferritin does go up past 80, it is back again along with the arrhythmia. My husband got Hodgkin's lymphoma but that can be caused by a number of things, my son now has diabetes but he was slack about treatment and his diet. I get repeat occurrences of Helicobactor Pylori which thrives on iron. My iron loading is aggressive and my veins are sick of being stabbed. But it is better than having to have chemo. For some people it is not so aggressive.
My husband's ferritin was about 554 when he was 52 and first diagnosed, and our son was 772 when he was 22, although they had milder forms of HH. Our son had glandular fever when he was 19 and as glandular fever affects a lot of the organs that HH can, I think it made his loading worse than it should have been. It was probably skyrocketing when he was in the midst of the glandular fever. They were only diagnosed after I was, then they were checked too.
I used to jump at shadows for a lot of people who showed some of the signs of HH and tell them to get tested, but over the years, and after a lot of creating awareness among people, drs and medical students, the panic about HH has reduced. As long as it is diagnosed and treated early, it is not significant in the whole scheme of things. It even has its benefits.
There are obvious markers for it, and it is not all about ferritin. First if your TS% is >50, this is a good indicator that will send you off for a genetic test. There are a lot of drs telling people they have HH just because of a high ferritin level, when they don't really (they are not sent for a genetic test or their genetic test is negative).
There is an Iron Disorder Institute in the US (website) that is very good reading and the information may help you feel less nervous about it.
Pratoman sheryl37154
Posted
My iron saturation is 25%, so not indicative of HH, and my TIBC and UIBC is right in the middle of normal range.
So we shall see.
ill keep you posted
selina58849 Pratoman
Posted
Hi. Have you thought of possible arthritis? Normally men with hemochromatosis have high iron levels from the age of 30, and given your iron levels I would presume they would be higher than you have now at your age. Iron levels can rise from many health conditions including inflammation, flu, colds etc... I hope you find the reason for your ferritin levels. If you're worried keep having blood tests to check on ferritin levels and have a list of questions ready to ask your hematologist. Wishing you the best, and a whole lot of healthy Years to come...
Pratoman selina58849
Posted
Thank you thank you Selina, yes I've thought of that, but thevonset was rather sudden. If my hematologist rules out HH, my next stop will,be a rheumatologist
Pratoman
Posted
So, saw doc, He rechecked ferritin, down to 303 (from 487 in November and 420 in January) Says it's not hemachromatosis. It's probably the aggressive iron transfusion therapy I had 18 months ago, when I had anemia. Nothing to do except follow up in a month.
thank you all for your help
Angus_Cooney Pratoman
Posted
Just asking this question was the food poisoning from raw oysters ?
Because the Iron is built up in Liver there is bacteria that causes Vibriosis this bacteria grows rapidly because of the Iron.
First because your Ferritin is High, go straight to a blood bank and give them a pint.
You will not believe how better you will feel .
Eat calcium chews, calcium binds to Iron in food and takes it out body till you see doc.
The only cure is to get the blood out . they will drain you down till its in 50's, then watch you for few months then do another test to see how fast the Iron is building back up . Then give you a plan from there.
Remember Iron is toxic and just builds up in men In fact the No 1 reason woman outlive men is because they dump Iron out there bodies in the menstrual cycle .
so go get a pint out while you wait for docs , take pressure off your liver for sure.