Recently diagnosed and unsure of what's to come

Posted , 5 users are following.

I was just diagnosed two weeks ago by the PA and I'm not set to see the gastroenterologist until next week. My iron levels are over 4000 and my saturation is 65%  as of a month ago .   What I could use some advice about is do all of your symptoms go away once you start letting them draw your blood?  My joint pain, weakness and tiredness are my main concerns at this point, do these go away  and how long does it take for them to go away?

1 like, 3 replies

3 Replies

  • Posted

    Hi, so sorry you have hh and pretty high levels. The good news is they did eventually diagnose you.

    Yes, symptoms do improve with venesection it just takes time. I was dx last June and having vs since September, it was awful waiting as I felt so unwell. My main sx were depression abdo pain and palpatations. My levels started at 950 and down now to 400. You will be getting a liver scan I presume and maybe your vs will be weekly to get your iron levels down. Have you been on the Haemochromotosis website as there is a lot of information on there re symptoms, treatment diet etc. Hang in there, take care.

  • Posted

    I was at the same level as you are when I started out.  A year and a half later I am at 650...getting within striking range!  I hoped that I would immediately, feel better or the symptoms would diminish in constant fashion.  Sadly, that's not how it worked out.  Not to try to make you feel bad about treatments, but just so you know what to expect.  It's not horrible, but you won't like it much either.  But you'll be glad you did it. 

    What to expect: there will be improvement, but in my case, the initial treatments made me tired on top of the fatigue I had. (If you read the boards, you will see "brain fog" come up a lot)  I had more of a series of good days and bad days, rather than a steady improvement.   Though over time the bad days were not nearly as bad and I started to have days of feeling energetic and pain free.  But, the disappointing part was feeling really good for a couple of days, and then having a bad day come back on.  You may think you've put it behind you and then, you will wake up not feeling like you've improved. 

    I have told others and posted here, as it can't be stressed enough, if I could identify one culprit in hindering my good days is sugar.  I gave up drinking but would occasionally indulge in sweets, or white bread.  Big mistake...these are horrible foods to eat for us.  I started using recipes and diet plans for diabetics and it made such a huge difference (I was spared diabetes).  I wonder how many bad days I would have avoided knowing that.  I think a majority of them.  If you haven't already been told to avoid salt, you should keep it to 2,000 mg or less per day.  I did have to re-learn eating and I make a lot more at home from scratch. 

    Also, avoid large meals.  My doctor told me to eat small amounts frequently during the day instead of one large meal.  I still get very tired after eating a large meal. What you eat now will play a major role in how you feel from day to day.  

    If you haven't been told to stop drinking, you need to stop today. At levels that high, you have to baby your liver.  I quit after my diagnosis (plus I had mild cirrhosis already).   Okay, I had some wine when I got married 7 months later!

     

    • Posted

      You are so right about eating small healthy meals! This has made a big difference to how I feel. I cook everything from scratch, lots of raw foods, salad vegetables. My sweets are fruit and Greek yoghurt. I have given sugar the elbow and also alcohol. I'd much rather feel well than abuse my body anymore with rubbish that has little or no nutrional value.

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