Haemochromotosis at 60 years of age

Allergies, blood and immune system
1

Hello, I have been diagnosed with Haemochromotosis C282Y last month, I am 60 years of age and was very active ,cycling 200 miles a week around three years ago.

I noticed a change in my cycling with tiredness and now with arthritis in my joints that I can now manage 20 mile cycle three times a week.

I generally feel tired all the time and lack energy, as I still work full time I just need a rest from the work environment for a few weeks.

The answer I am looking for would it be an option for a Doctor to sign me off sick for a few weeks, or is this a condition just have to live with it till the treatment has started.

I have very rarely taken sick through my working life, so is this acceptable to a Doctor.

Thanks for any replies.

 

2

Hi Veloman. Sorry to hear about the diagnosis and the arthritis, lack of energy. I'm Mike, was diagnosed last June, ferritin level of 2000...had bad joint pain in my right hand. Have had weekly venesections since then..my level is now 275. Not long to go now to level 50. I'm 53 years old.

The symptoms will persist until you start your venesections. In time your energy levels should return, and hopefully you'll find real improvement with the pain...though this does vary from person to person. I certainly have more energy now, and the hand pain is now very minimal.

What was your ferritin level? Any other symptoms with the liver or other organs?

The treatments really will help to some extent, and your energy levels certainly should come back...even after just a few.

There is so much more to advise with diet etc...so please do keep in touch. I wish you well with the treatment....

3

From my experience, been deironed for 16 years now, 9 years prior undiagnosed with severe symptoms, the fatigue and pain never went away.   With some people the fatigue does go away with venesections.  I depends on the severity on how long that takes.  I had to give up work as I only last a few hours a day, I cannot keep up with all the necessaries.

Haemochromatosis arthritis experts tell us that the arthritis pain never gets better.  If you have a sympathetic doctor who will give you a certificate for a few weeks, take it by all means.  It depends on how much your dr knows about haemochromatosis.   You might have to educate him.

Having said that, try to keep moving - you might have to get a stationery bike, as being on sick leave and being seen riding a bike outside might not go together.

Eliminate sugar and starches from your diet, it reduces fatty liver and may increase your reduction of ferritin, as well as saving your pancreas.  It might also help with the joint problem.  Eat a normal serving of meat/protein and lots of green vegetables.  Drink tea, coffee, milk with meals to help reduce the uptake of iron, eat calcium products, like cheese, yoghurt at end of meals.  A small glass of red wine with dinner also helps, with the emphasis on small and singular.

Avoid high vit c products with meals, e.g. juice, supplements.  I must have my vit c tablet each day to stay free from colds, sore throats, etc. but I have it last thing at night when hopefully, my stomach has emptied.  It is mostly at the duodenal, that excess iron is absorbed from food.  Antioxidents are important.

This is my last post for more than a month as I am going overseas and I don't expect to be contributing for a while.  Letting you know, in case you have further questions and I cannot answer.  However, I am sure others experienced with HH will do so.

 

4

Hello mike

I just rung the Doctors Surgery and spoke to the records dept, I have a level lower than yours, mine is 1020, is this a very high level, as this is all very new to me.

Thanks Bob.

5

Hi Bob,

I've known people with levels of 5 and 6000!

Mine was 2000. I believe normal range is 50-300 or 50-400.

So, yours was certainly higher than normal, and they say once it's over a 1000 it becomes more serious to get treatment started. So, you're just over a 1000 with treatment due to start soon, so it's all been caught in good time. Drink lots of milk and tea when eating esp with meat, as calcium and tannins in tea prevent iron absorption.

It's all quite scary at first when first diagnosed, but with treatment any further complications will be halted, and present issues may improve...it's all very individual. But your level could have been much much worse. Get the treatment started...and get the level down to 50. Keep in touch, and ask any question you wish...I'll share what I've learned so far...

Mike

6

I have hemochromatosis, found out about 2 years ago. I am deironed and I feel better now. The arthritis did not go away though, but the other symptoms did. I was 1675 and now I am 22. I was very tired during the deironing process and my doctor did write me about for a month. It is a lot to get deironed weekly and your body has to replace the blood you had taken out.

I found that if I did not dehydrate myself after the venesection, I was so sore, then I started drinking a lot before and after and I bounced back to my old self easier. I started to feel better once I was in the 500's.

Besides arthritis, my biggest complaint was how hot I always was, very uncomfortable. I have more energy now for sure.

You should ask your doctor for time off, you deserve it!

7

Hi.

I definitely agree with hydrating yourself before a venesection. I drink a good few pints of water hours before. The blood really does flow easily when your hydrated. I always drink a glass during the procedure as well, and I treat myself to a chocolate bar..thought the nurses always try to "steal'' my chocolate from me. For the first month or so, I did feel so very drained the following morning, and sometimes was unable to go into work. My employer has been very understanding...and still let me shoot off every Wednesday lunchtime to go for my venesection. I actually enjoy going, as the nurses are wonderful, and I get to meet and chat with other iron men and women.

8

Hi, I am actually a Physician myself, an American anesthesiologist, retired due to the arthritis.  Unfortunately, the arthritis has nothing to do with your iron levels.  You do need to treat your iron levels so you don't destroy your liver, heart, etc, but it won't help the arthritis or it's progression one bit.  From my studies the problem seems to be an increased inflammation going on in our tissues.  There is very little in the way of studies going on.  In fact, I have found only a single clinical trial going on, in Rennes, France that is trying out a rheumatoid arthritis drug on us.  However, it's one of those drugs that works by shutting down your immune system, much like Stelara does.  It's not something you want to be on if you don't have to be.  I have been treating my fairly severe pain with nerve blocks for the back/spinal pain.  I am on narcotics, but I recently discovered anticonvulsants, specifically, topomax, is really good at centrally shutting down pain signals.  So your joints may be shouting at your brain, but your brain stops hearing them.  I also have had a lot of muscle cramping, also a common occurence in hemochromatosis patients.  The best relaxant drug I've found is tizanadine at 4 mg three times a day.  I also got myself a TENS machine to use on any painful area along with some massage blocks to put on tender points.  You really have to hit this with a combined approach or you will find yourself slowly retreating to your couch!  And, as I said, doctors just aren't very well informed on this aspect of our disease.  Hope this helps.

Lynda

9

Great to hear from a medical professional.  It is rare.  Whether it is because not many medical professionals have it (as often the severity prevents people from achieving their ambitions), or they do not want to admit to having HH.

I am not sure if you are saying you have haemochromatosis or not.  There is arthritis and there is haemochromatosis arthritis.  You are right about iron levels.  People seem to develop haemochromatosis arthritis at varying levels, and we are told venesections do not ease it once it is set in.

I have heard a researcher on the subject talk about withdrawing the hemosideron from the joints but obviously not very practical.

I had to have both hips replaced as a result of osteo necrosis caused by my blood being so thick with iron, it blocked the finer capillaries feeding the bone, so the bone died and broke up.  I was 9 years undiagnosed at the time.

I am attending a HH conference in August where the latest on this condition will be spoken of, also attended by Prof Brissot from Rennes, whose speciality is liver, but he might give us some info on what his other colleagues in Rennes are doing.