37, newly diagnosed wiht hh, caught early but few questions re haemaglobin, ferratin levels and flus

Allergies, blood and immune system
1

Hi all,

Was fortunate to catch my HH early and prevent it from causing problems(had joint pain-everywhere-was limping at one stage, but Fatigue was the main reason I went to doctor) . My ferratin levels were really low  I think 2 60-270 max(in Ireland the reccomened amount is between 1-100 and it is brought down to 50 in treatment if you have hh), so I know I was very lucky.

I have a few questions. After two venesetions my ferratin levels were actually higher or the same e,g 270 , does it take a while to register the drop?

my hemoglobin dropped to 10.5 on the 2nd venesction, (so instead of weekly venesections  the nurse suggested every 2/3 weeks) I have had two more venesections since and not sure if  my haemaglobin levles have dropped more as a result, I am even more tired now than I was initially, is there a way to increase heamaglobin? (I know diet doesnt make a huge difference with hh but I’ve a very good diet and I dotntdrink or smoke).

Last question, after the last two vensetions (but not the first two)  a day or two later I had flu like symptoms each time -sore throat, chest, ears(worse this time than last time), prior this I rarely got sick. Is that a coincidence or can that happen?

appreciate any answers for this newbie, everyone else in family is a carrier so havent really anyone to ask.

2

Meant to say the test for my ferratin levels was taken after my 3rd venesection but only expected it to register the first two vensections but it was a little higher than when I started, does it take a good while to register any drop?

3

You are very lucky. I was 55 and ferritin was at 1475...I am happy to say that 7 months later with weekly phelobotomies that I am at 275. I had a lot of joint pain and mainly complaining of being hot, which was misdiagnosed as menopause.

I too, sometimes don't bounce back to a decent count for hemoglobin, my doctor will not do it if it is less than 12.3....in the 7 months I have missed 4 phelobotomies because of this. I believe it is something that I am doing, a few times I felt it was a new vitamin supplement that I took. One time I did drink alcohol during the week before I had it. A few times, I did not have proper rest, I worked a lot and night shift work. I am usually tired the 24 hours after the blood draw, I try to lay down and recover and drink a lot of liquids.

I have tried a lot of things to get the ferritin down. I have had the most success with drinking tea with every meal. I read that cranberry does a little chelating, so I have recently added that.

I do have an occasional glass of red wine, which is supposed to be o.k. without food, however I do add some cheese and that has the calcium that blocks iron absorbtion a little.

Hope you get to feeling better. I can't wait until I am at 50.

4

Wow you have come a long way in 7 months. Are you going weekly?

At first I was fine after the venesections but was exhausted and dizzy after the last two as well as slight colds.

I have a goo amount of cheese- maybe that helps . What's is chelating, have heard of it Blume before too. I think I was11 max so can't wait for 12.3.

I hope you feel much better as your levels drop?

5

I am not dizzy, however I did ask at the clinic and they said if you do not come hydrated and have eaten a meal, it can happen. Are you drinking water and eating before going?

Chelating is when some foods can help get the iron out of the body. You can google it. There is a pill that does it, but of course it has side effects.

I do feel better. I felt sluggish and exhausted all the time. I am about 30 lbs overweight, I blew it off to that and menopause. I feel more energetic and actually a little chilly. I also was red all the time, my skin was flushed.

When they do your blood tests, do they give you your white blood counts? I see mine and that is what fights off colds, etc. My whites are working great.

The afternoon I get my blood drawn, I go home and make something to eat and get tea and water and get in bed and baby myself the whole evening. Then the next day, I am almost back to normal.

6

Drinking water really helps the nurses find the veins too.

7

Yes, I go weekly, I have even bounced back to 12.8, which was the highest.

8

Are you homozygous C282Y (as in two genes), or H63D, or compound heterozygous C282Y/H63D?  Usually with homozygous C282Y your Hb bounces back really well even with weekly or bi weekly venesections.  H63D is not a high ferritin level absorbing gene in the long run.

If you are not those mentioned above, and only have one gene, you will not be able to be venesected often as your Hb does not rebuild fast enough, and technically, you don't have HH.  Another marker is having a TS% higher than 45%.  What is your level?

Flu or any infection/inflammation can make your ferritin sky rocket.  But you are talking about having this problem after venesection.  Being homozygous C282Y, I feel so much better after having a venesection, then in about 13 days the fatigue and body pain descends on me again.

By early evening my body is so fatigued it feels shattered and I get flu like symptoms which disappear as soon as I lie down.  I have to have dinner by 5.30pm so that I can lie down asap.  If I lie down before dinner, I feel dreadful, and do not want to get up.  they say not to take vit C/OJ as it promotes the uptake of iron, but we need antioxidants too, and if I don't take my vit C daily, I end up with flu.  So I take it hours later last thing at night after, hopefully, my dinner has moved past my duodenal.

Foods like tea, coffee, red wine, milk, cheese (dairy which contains calcium) are not chelators but are supposed to help reduce the uptake of iron.  You need to drink them while you have your meal in your stomach, (iron is uptaken by the duodena) and end your meal with cheese or yoghurt to help reduce the uptake of iron.

Honestly I preach this (as read The Hemochromatosis Cookbook), but personally, I am wondering if this really works, for me anyway.  I am so tired of being tired and weak.  I am 'deironed', and my ferritin is brought down to about 34 after each 3 monthly venesection which seems to be my optimal level - when I feel best (for a few days anyway).

Symptoms set in immediately after having a hysterectomy in 1998, fatigue and pain was extreme.  My dr took 9 years to diagnose and only after one of my hips broke up.  I ended up having both hips replaced and have had so many health issues since because of having so much iron absorbed by my organs.  But theoretically, being deironed, I am told that I should not have any more problems.  Personally, I don't think that is true for me, nor many others who had such a delayed diagnosis.

I have found that I am worse in terms of fatigue when I eat anything with sugar or starch in it, i.e. cakes, biscuits, etc of course, bread, pasta, rice, potatoes in any form. In fact I feel toxic and I feel like a truck has hit me.  It is hard to resist other people's home baked goodies - I just don't buy that stuff at all now.  However, celiacs have to do it, so I should be stronger.  They suffer worse of course.  I found that I lost a lot of fat from around my waist and belly as a result because that is where the 'sugar' fat goes.

Having said all that I have not answered your question about increasing Hb!  It just seems wrong that you are getting low Hb with HH.  So perhaps the answer lies in my first question.

9

Thanks all. Picking up lots of info here... Very helpful.

I didn't actually know how many genes I had but just looked at the letter that came back after the gene test and I have two genes.

I know my tf rate was above 50%, a good bit above it I think as they commented it was quiet high.

Some days I eat a light breakfast but the day I gp for a venesection I always have a good breakfast.

There has been no mention in my white blood cells.

10

Thanks all. Picking up lots of info here... Very helpful.

I didn't actually know how many genes I had but just looked at the letter that came back after the gene test and I have two genes.

I know my tf rate was above 50%, a good bit above it I think as they commented it was quiet high.

Some days I eat a light breakfast but the day I gp for a venesection I always have a good breakfast.

There has been no mention in my white blood cells.

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11

I am glad you mentioned 'misdiagnosed as menopause'.  I am sure this happens a lot as the symptoms are so similar especially if they come on at menopause age.  And they often do, because as we stop menstruating, iron overload occurs.

Many women are sent away with a flea in their ear being told, you are in menopause, you silly woman.  They then suffer so unnecessarily and their health is put in jeopardy.  Later they come back with the same symptoms and they are told, it is old age, you silly woman.  By 70, they are presenting with liver disease if they have not died of heart failure by then!

I have tried to tell women complaining of their 'menopause' symptoms on another forum, to ask for Iron Studies, but really they are not interested as they think their dr has tested them for 'everything'.