Managing symptoms, a job and young children

What exactly do you have. 

 Hi 

From my experience there is light at the end of the tunnel, although for me it was a long, hard road. 

I was diagnosed 18 months ago and my iron level was 1200.  I have been having fortnightly venesections (where possible; sometimes it has been 4 or 5 weeks in between) and my level was very slow to drop.  

However I am now down to just over 400 and I am feeling very well.  I have not had joint pains now for weeks and, whilst still not back to full energy levels, I am no where near as exhausted as I was.  

I hope it works quickly for you.  The venesections, for me, where a tad uncomfortable but not painful in any way. 

Good luck. 

It all depends on your starting point my ferritin levels were 3900 and had already damaged my thyroid which some symptons are similar to HH.With me there was no quick fix long and hard road to bring ferritin level to 220.Still experience physical weakness and tiredness .My son (44)was diagnosed early and from outset became a regular blood donor which maintained his ferritin levels within the range.He is super fit cycled 6000 kms last year on road and off road.He unlike myself does not have to watch what he eats.

It is exhausting, it gets better, but not overnight.  In retrospect I should have done as some do and took medical leave.     If you have a move coming up, you could skip a few weeks.  My doctor found it important to take recovery time every few months.  It depends on your levels though.

It all depends on a number of things.  What genes do you have, what is your ferritin level, TS%, serum iron level?  How often are you being venesected?

I think you have to face up to taking leave.  I was killing myself trying to keep working - also at a university with long hours.  There was a 9 year delay in getting a diagnosis which did not happen until my hips broke up.  My husband saved me from myself by getting Hodgkin's Lymphoma and I had to take long leave to look after him and I saw that I was much better off and that I could not return to work.  I was lucky in that I was given a redundancy (which I did not want!!!).

You will not be doing your career a service by fronting up so tired you cannot think, or stand up, memory shot, and looking and sounding incompetent.  You probably have a new mortgage now and think not working is possible, but if it is as bad as you describe, you must find another way, holiday leave, sick leave, long service leave, go cap in hand and see what can be done to allow you some time off, like a couple of months at least.  Trouble is, you cannot even rest during that time as you are shifting house and have young ones, but at least it is one huge strain off your plate.

Before I was diagnosed I ended up staggering and slurring from fatigue, my whole body aching.  I reckon my colleagues thought I was having a few sips during the day!

This is two months later so when you get yourself together, let us know how you went.