Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I have been feeling unwell for a number of months but also have a reocouring issue with my back\shoulder ache. The doctor did some blood tests and it came back with a ferritin level over 772. The repeat test the follwing month was only done on the transferin levels and it was lower this time, but not normal ( just had my monthly Period) He had already asked for a HH after the first high count and presumed as it had reduced it would come back negative but it didnt. I was told to wait another month, then have all the test repeated before seeing a specialsts. As they seem to think i should not be having any symptoms, and that my extra aches and pains are related to my back\shoulder problem. (which my Oestopatch treating me for, says he sees this alot with people with HH but he says its unrelated to my ongoing issue he is treating)
I have been monitoring how i feel on a daily basis to see if i can see any patterns. After my monthly period i feel better in myself but within a week, i start to feel fatigue, extra aches and pains in joints and muscles,overall weakness, and a general feeling of not benig with it ( unable to conentrate or focus, a feeling as if i am drugged up on pain killers or something)
The GP said they wont normally do anything unless the levels went over 1000 as before then i should not feel any different.
So why do I still feel like this, is it normal
I have been monitoring how i feel on a daily basis to see if i can see any patterns. After my monthly period i feel better in myself but within a week, i start to feel fatigue, extra aches and pains in joints and muscles,overall weakness, and a general feeling of not benig with it ( unable to conentrate or focus, a feeling as if i am drugged up on pain killers or something)
The GP said they wont normally do anything unless the levels went over 1000 as before then i should not feel any different.
So why do I still feel like this, is it normal
I initially had liver issues, aches & pains, and constantly tired. Since my level is back down to normal, I feel like a new woman!
I would definitely get a second opinion or go see a hematologist. There is no reason to wait for the ferritin to rise further before treatment. Why wait for more symptoms or even possible organ damage? I had liver damage already and my ferritin was not as high as yours.
Please keep us updated on your progress!
Hemochromatosis usually isn't detected in women until after they have gone through menopause. The reason for this is due blood loss during the menstrual cycles. The only reason we found mine was because of my liver enzymes being elevated. The dr was just going to treat me for fatty liver disease until I brought my ferritin and tibc levels to her attention. She was still skeptical because I was "too young" for the signs of this. I'm glad I pushed her forward on this. I feel so much better now that my levels are back normal! I went earlier this month for my 3 month follow up after leveling out and I've only went up 3 points!
I learned a lot about hemochromatosis through many helpful websites. One I found very helpful was www.irondisorders.org and this forum.
I like the forum because you hear real people's symptoms and everything instead of just the textbook symptoms. Hemochromatosis reacts differently with everyone. Not everyone will have this problem or that. I actually heard someone say that it is considered the "hypochondriacs disease"! (I had to giggle on that one!)
Make changes in your diet now. This will slow your ferritin from raising as fast. Limit your amount of red meat you consume. Cereals are very high in iron content. Raw shellfish (and ocean water) can be deadly for hemochromatosis patients..... remember that the normal person will absorb about 10% of the iron they consume while hemochromatosis people can absorb as much as 30-40%.
Do some research and make a list of the questions you have for the dr. Don't let the push this off until your numbers get higher. If you are diagnosed with hemochromatosis, ask about getting your famply members tested also.
Please keep us informed as to your progress!
Welcome to teh forum.
I was diagnosed in 2014 and my ferritin was just over 700.
I was seeing a liver specialist and he sent me for a liver scan taht showed irin in my liver but he was not to concerned and said we wont do anything till your level is over 1000.
My wife pushed (luckily for me) to see a heamatologist and the heamatologist wanted me to start immediate weekly plebotomies to reduce the level from 700.
She said that my level was way to high and she wanted it under 50, she also said that my level could cause organ damage so she did not want it to get any higher than it was.
Subsequent tests showed that I seem to have got away without much damage.
My Liver specialist at my last appointment ,1 year on from diagnosis said "its a good job that we started treatment as your level was Very high!!!" he has changed his tune!!.
I do have pains in the hip and fingers and toes, but they do seem to be getting better slowly since my level has come down to 37.
I did hear that tit can take 2 years after being de-ironed for teh full benefits to take place so I am holpig that things will continue to improve.
You seem to be suffering from classic HH symtoms, ask to see a heamatologist if you are not already and if you have not had the genetic test that proves that you have HH ask for that as well.
At the end of the day its your body and you who will suffer if you dont get treatment not your doctors, if he wont help ask for a 2nd opinion or find a new doctor.
The sooner you start treatment the less problems and issues you will get longer term.
This is a very common condition, but unfortunatley not all doctors are up to speed on it or even know about it.
My sister in laws doctor does not know of it or what tests to order!!!
we are trying to educate him!!
Dont delay, as some of these things can be halted before major damage is done and even reversed, but if left you could get a permanent condition like diabeties, cancer Heart disease, dementure etc to name but a few.
Sorry to go on but it is a serious condition that is so easily managed, you cant be cured but management can delay or stop the consequences of this condition.
Take care and let us knlow how you get on.
I live in the UK.
Regards
Steve
I purchased two American books on Amazon which has taught me so much about this complaint. My ferritin level was 534 and started venesection straight away. My symptoms are bad and I hope soon to start getting relief. I would go back and ask to start treatment now. They mentioned the level of 1000 to me ,but I said I want to start the treatment and not wait. They agreed to do so. Give it a try and good luck to you .
I have read or that these symptoms are actually affecting me more. A few months ago I felt normal. Now I'm out of breath doing basic things. Takes so much effort to breath while doing the shopping. Appetite has gone out the window. The family are fed up with me not wanting to do anything cos I feel so bad. Think they think I'm making some of it up. Feeling rather alone as they no longer want to listen.
So sorry to hear that you are feeling so unwell, and that you are not getting any sympathy from your family.
Have a look at the below links there are articles that you can print and show your g=family that this is a real problem and is not in your head, plus there are some articles that will help you as well.
http://www.haemochromatosis.org.uk/
http://www.haemochromatosis.org.uk/pages/newsevents.html
Take care we are here for you if you need to ask anything or need support.
Regards
Steve