having to wait over a month for hfe genetic test result...

Hi Tina.   Thanks for your reply.

Guess It looks like we've got the short straw up here in Scotland then having to wait so long. I think the waiting is just making me more anxious and the chest pains and fatigue are getting worse. Did you feel the same having to wait? How long was it before you had venesection? I'm just worried the damage it might be doing to other organs as well. Would feel better knowing what it is that's wrong with me and giving it a name I guess and hopefully it's not done any long lasting damage. It seems like a horrible disease having read about it.

How are you coping with it? Hope your getting better x

Hi chelle I was diagnosed in December 16 got my first venesection in the January my levels were at 729 was going every month then now go every fortnight as my levels weren't going down now at 474 was actually there today for venesection.I am very tired all the time got joint pain and fatty liver with it.My dad had the disease and my mum a carrier where abouts in Scotland do u live.Some days I'm better than others as I gets me down sometimes.

Hi Tina

             Yeah I know what you mean I'm having a low mood week and the tiredness is awful although most nights I find I can't sleep for it either, do you find that?  Does the venesection help? My ferritin wasn't too high at 199 and not too much a concern but my sat index was 61%  am also missing having a nice glass of red wine in an evening as I'm scared I'll make things worse and damage my liver ....it's so rubbish having this isn't it!

i live in Aberdeenshire by the way  whereabouts are you? X

Your transferrin saturation % of 61 is a good indication that you have hereditary haemochromatosis.  However your ferritin of 199 is not generally high enough to cause any problems.  If you multiply your Serum Iron by 61% that indicates how much is AVAILABLE to be stored.

I had constant chest pain in my 8th year undiagnosed plus the fatigue and body pain was so bad I was slurring and staggering.  Not till my hips broke up in the 9th year that I was diagnosed.

But my ferritin level was >999 even though I had been donating blood every 3 months not knowing I had HH.  My TS% is often 99% and has even been 107% even though I have been 'de-ironed' for many years and now have maintenance venesections every 3 months.

I am suggesting that you should not feel so anxious, and feel lucky that you have been tested early before it has got to a bad stage.

Good luck.

Hi Sheryl

                Thanks for that will try not to feel as anxious about it all. I know I'm only making things worse as my BP was high last time, it's just so difficult not to worry but just want to feel like my old self again. Hope your doing ok best of luck 

I'm ok as I don't like red wine I live in ayrshire near Ayr 

Hope your feeling better Tina and less tired after your venesection can't say I'll be looking forward to having those if I do have HH  

Have a good weekend and do Keep in touch maybe we can help each other 

Ayrshire is a beautiful part and of the country by the way  x

Hi Chris

              That's good to know the red wine is not making things for worse me, it's made me feel loads better already especially with the weekend coming up! 😁Think I shall  just try and enjoy myself and stop feeling so anxious about it all. Hope your doing ok since the hip operation and cheers to feeling well 🍷 Best wishes