Wondered if your heamoglobin rises with heamocromitosis?
Posted , 3 users are following.
Hi my question is I had a hysterectomy in 2013 and since I've slowly felt unwell, thinking it could be menaporse, however during this time my heamoglobin and heamocrit have risen, two months ago it was 174 and 0.53, my symptoms have slowly increased and I constantly feel dizzy and if not dizzy like a drunk feeling, headache, palpitations and stomach pain on my right side and painful joints and when I eat I feel all dithery, I've never been anemic in my life and I've been thinking that perhaps I've got a problem in absorbing too much iron because if I eat a full meal I feel terrible. So I took things into my own hands and the last two month I've cut rich iron food out of my diet, my heamoglobin and heamocrit today I found out gas dropped considerably in two months. I've still all the symptoms but I'm wondering if I have heamocromitosis and it might be good to be tested? Has anyone else had high heamoglobin and heamocrit levels with heamocromitosis? And what symptoms do you have?
1 like, 10 replies
l76057 julia15874
Posted
Hi Julia - I've been asking the same question as have a few others on here. During bloods being taken in June specifically for HH, it was discovered that I had a haemoglobin of 171 - very high for a female of my age. I was advised to rehydrate myself as I had been unwell but this made no difference. I was then advised to stop taking a diuretic that I had been on for many years - it came down to 159/158 which is just above the top end of normal but it then stayed there. My genetic test then came back showing the mutated C & H gene for haemochromatosis but I am
not overloading with iron. When my haemoglobin was at its highest I had exactly the same symptoms as you, although they have mostly gone since it came down a bit. I have been referred to haematology and my appointment is in 3 weeks time so I will ask about any connection when I'm there because a few people on here have asked. It doesn't look like there is but it won't do any harm to ask again. Hope you are still being investigated as not good to have raised haemoglobin for too long. Linda
julia15874 l76057
Posted
Hi Linda, my heamoglobin and heamocrit have been high for two years, only just started seeing a heamotologist in July for polycythemia, my heamoglobin got to 17.4 and heamocrit 0.53, red blood cells 5.66, had all the test for polycythemia Vera, but was just about to have a test for red cell mass test, while waiting for the test I visited the GP for dizziness and I've cold painful hands and she took a vitamin B12 vitamin D and another full blood count and my full blood count has dropped considerably from 17.4-15.5 in two months my heamocrit is at normal levels too, my GP asked what I had done and the only change is I've cut iron laced food out of my diet especially red meat, my GP then said tell your heamotologist he might want to check for heamocromitosis as it can make your heamoglobin rise! So I have phoned him and await his response, my GP did say however it could head straight back up, I've had ten blood tests over a two year period at all times of the day and this is the first time my bloods have lowered, very strange x
julia15874
Posted
How long does the H gene take too? Plus all my tests for polycythemia Vera have been negitive, although I've not had a BMB, if your been referred they may be thinking polycythemia or polycythemia Vera too with you Linda.
l76057 julia15874
Posted
I don't know what my haemocrit or red cell count level were. I don't eat much red meat but I stopped eating green leafy veg. I haven't had any alcohol either (never drank much anyway). So have you been diagnosed with polycythaemia? I also went on a low fat diet and this really helped with the discomfort on my right side which makes me wonder if it is my gall bladder. I worry more that I could have liver damage. I don't know how long my haemoglobin was raised because the last time I had FBC was a few years ago. Then just found by chance in June. I'm on. Haemochromatosis forum and no one on there thinks it's linked but a few members do have polycythaemia as well so I does make you wonder. Watch this space in 3 weeks and I'll let you know how I get on. Good luck.
julia15874 l76057
Posted
Yes I have been diagnosed with polycythemia but not the more serious type of polycythemia Vera, I was going to have a red cell mass test which determines how high your red cells are or if it's your red cells are okay for you, then my blood result dropped so it couldn't be done, although my GP said this confirms that while your blood was high it wasn't normal for you so I await my heamotologist call, he may want to just do a BMB now perhaps as my blood is more unpredictable! Going up and down, but it was my GP that mentioned heamocromitosis, my heamotologist might think differently, I'll just see what he says when I here from him x
l76057 julia15874
Posted
My gene test took ages. My daughter was found to have the 2 faulty genes for HH so my hubby & I were tested. His came back in about 4 weeks but they chased mine up after about 7 weeks. Apparently they test in batches to cut down costs.
julia15874 l76057
Posted
l76057 julia15874
Posted
I know - it's 6 months since it all started which is nothing compared to you! I'm a worrier and actually that's the worst bit for me. I've got myself convinced that I have something wrong with my liver. My daughter says that I don't know so no point in worrying but that's easier said than done. However, only another 3 weeks and this will at least start to happen. In my heart of heart I am hoping my levels have dropped to within normal limits an only need monitored. Here's hoping 🤔 Hope you get answer - take care x
julia15874 l76057
Posted
Please don't worry, but you definitely need some reassurance, I was like you when my heamocrit and heamoglobin was getting higher, I still can get very anxious at times. I got told above 0.55 heamicrit and 175 haemoglobin for a female they then consider that as somewhat priority, but not an emergency, I was convinced I'd have a stroke or heart attack but apparently mine had not reached that level, although I've been especially concerned about flying and going to high altitudes and still are in case my levels jump up again, I think they will! . Try in the mean time to keep pushing to get you levels checked as anxiety can make them higher too, hard I know?
sheryl37154 julia15874
Posted
Have they done an Iron Studies test? That tells the story, not a FBC. Don't reduce natural foods that contain iron. Besides most food does, but avoid foods supplemented with iron, e.g. some breads, etc. You don't have to avoid red meat when you are being venesected, but you may feel better if you do so till this is sorted.
Keep eating your greens, high iron in spinach, etc is a myth. There is a lot more non-heme iron in legumes (i.e. beans - not green beans). Sugars and starches cause the worst problems to the liver (as well as alcohol).
I have been dealing with homozygous C282Y for 26 years now, the first 9 years undiagnosed, and while I have been 'deironed' for many years now, I still feel ill and lethargic after eating. I have discovered that eating sugars and starches cause me the worst problem in that regard, so I avoid them as much as possible, that includes breads, potatoes, pasta, etc., let alone cakes, biscuits, etc.
Despite all my venesections - even when weekly, my Hb is always high, as well as my hematocrit. That is why my body can deal with many venesections.
In the 9 years I was undiagnosed but suffering all the symptoms - drs were much more ignorant about HH back then - I was staggering and slurring with fatigue, whole body pain, chest pain left side, then my hips broke up from osteo-necrosis. That was how I was eventually diagnosed. The radiologist knew what I had. The chest pain left side dissipated with venesections, but it has been discovered that I also had severe arrythmia at times, so some damage has been done there as well.
So the main thing is to get those Iron Studies done, then if they indicate a high TS%, you should be given a genetic test to confirm.
Menopause for women is the worst for those with undiagnosed haemochromatosis as the symptoms are so similar, and anything else is ignored. So you have a double whammy of symptoms, which hrt alone won't fix as you need to get the haemochromatosis treated too.
Good luck.