I have sudden overwhelming fatigue - what can I do?

Hi Aiden - If you do not have copies of your blood test results history, try to get copies and check the trend of those results.  I am hoping that your dr/hemotologist 'deironed' you to less than 30 if you had a high ferritin level over a long period, and at least less than 50 if you were diagnosed early.  Make yourself knowledgeable of how your levels work.

A venesection of 1 pint (or 450-500mls) will remove 24-25 grams of iron from your body, so if your ferritin iron was 85 at time of venesection, it will be about 60 in 1-2 days time).  Become aware of your optimal level - that is when you feel best at which level.  You will eventually work that out when you keep a record your fe levels, and ask your dr/hematologist to maintain that level.  Usually, just within the normal range, i.e. near 250 for males is not good enough for someone with HH.  But everyone is different.

Infection, illness, inflammation, etc. can cause your ferritin level to rise sharply and bring on those symptoms after you have been deironed.  Do you have arrythmia - you may not even know it is happening?

If you have had high ferritin iron for a long period, quite often the damage that has been done is not always repairable (I know this from personal experience as well as those in my support group - some drs may say different and will tell you that you will have no more problems) and problems will surface later on.

Is liver ok, or has it been affected?  If your pituitary gland has been affected, your hormones may be out of whack and causing your fatigue.  There may be other causes which I cannot think of off the top of my head.

Let us know how you go because this may help someone else with the same problem.

Sorry, 0.25 grams not 25 grams, but it still is whatever your ferritin level is minus 24-25 (the equivalent of iron in a 2.5 inch nail!).

When's the last time that you went in to have a phlebotomy/venesection? I'm wondering if maybe it's just your time and you've now surpassed what your optimal level is. I'd suggest asking your doctor to re-test your iron level right now and seeing what it's at.

Semi side note, when my iron level is below 40 I am extremely fatigued. That's what it was sitting at practically all of last year and I was more tired than I had been when I was initially diagnosed at 600+. If you happened to have your last phlebotomy not long ago, perhaps your issue is the same as mine and they've now withdrawn too much?

In the meantime, something that's helped me is taking B12 supplements. I didn't initially think they were working until I missed a day and felt like complete crap, just like I had before my iron levels were under control.

 

And actually,

Reading that you exercise daily, maybe you're overdoing yourself and/or not eating enough calories to compensate. That can happen as well. If you don't feed your body properly for the work that it's doing you can get extremely fatigued and it's not good for you.

Megan's suggestion of checking your B12 is very important.  And if tablet supplementation does not work for you, injections work best, especially if you have A Type blood.  My husband (who also has HH) had the same problem, and I discovered that A types don't absorb the type of B12 that is in tablet form.

You will need to get a dr to listen to your heart or take your pulse to find out if you have arrythmia.  Also, it probably won't be happening to you all the time.  Just something to eliminate as a cause.

Is your maintenance schedule 3 monthly venesections?  You should be able to cope with that.  Even non-HH people can do donations at the Blood Bank every 3 months.

Hi Aiden, one of my major problems with HH is chest pain which became evident in the last twelve months before diagnosis.  Doc took 9 yrs to diagnose.  I was in a pretty bad way and had to have both hips broke up.  Years later, I developed a pitutary gland tumour and the endocrinologist listened to my heart.  I thought, this is the first time in years and years that someone has listened to my heart.  A cardiologist confirmed it was beating 21,000 extra times in 24 hours.  Whenever my ferritin level goes up, I get chest pain and arrythmia - venesections relieve it.  I now recognise when I get arrythmia too.  Before that I did not know.  I bought a heart monitor strap that runners' use with a wrist monitor as the medication (beta blockers) for arrythmia was very bad for me - dilated my blood vessels and let iron into my brain and caused a whole lot of other problems.  Don't ever go there.

As I become due for a venesection (every 3 months), fatigue and pain set into my bones and muscles.  One to 2 days after venesection, it goes away.

I meant to say that both hips broke up and I had to have hip replacements.

Aside from everything Sheryl's discussed with you in terms of asking your doctor to check for arrythmia (just in case that's the cause of your sudden fatigue), you do have to remember that, at least where I live (Canada), a normal iron level is anywhere in between 12 and 200. For me, because I'm so young (25) and my iron levels appear to be climbing slowly, I apparently don't have to go have blood taken unless about 6 months as gone by. There is always a chance that you're the same way, depending on how fast your levels climb in comparison to what your optimal iron level is (which can be difficult to find. I still don't know what mind is yet).

And you're right, your exercising doesn't seem too strenuous, but it also depends on the types of food that you're taking in. For instance, if I don't eat protein in every meal I am starving 2 hours later and in no condition to do my workouts anymore. Just a thought.