New to HH. Struggling with Chronic Fatique
Posted , 4 users are following.
I recently was just diagnosed with Hemochromatosis at the age of 45. I have struggled for years with chronic fatigue, depression and other symptoms. At one point years ago my old doctor told me I had PTSD and GAD. Sent me to see a psychiatrist. After about three sessions of doing breathing exercises and eye movement therapy, I walked out and then left my old doctor and went to see a friends doctor for a second opinion. After some lab work and genetic testing I in fact was positive for one copy of the C282Y and H63D HFE gene. My labs came back with a Ferritin level of 72 and total iron was 246H and saturation % was at 74H. I went for an MRI and my liver and kidneys are fine, which I feel lucky. My struggle is with the diet and how to kick this chronic fatigue. It has got so bad that I struggle to get out of bed.
I went for my first blood donation at the red cross. I was turned away because I was stationed in Germany from 1990-1992 in the US Army during the Mad Cow disease and can never donate blood in the U.S. because of this reason. I had to see a specialist get a prescription and then go to a clinic that specializes in these conditions. I was excited because I thought after my first blood donation I would feel great. Well I am here to tell you I feel terrible. This was two days ago and I feel worse then ever. I feel so fatigued it is not even funny anymore.
Any recommendations as to how to beat this chronic fatigue and sluggish feeling I would greatly appreciate it. I will leave my personal email. I did order the cookbook off of amazon. I guess I will start there. Thanks Michael from Baltimore.
1 like, 4 replies
Linda1967 Michael_45
Posted
Hi Michael, I am not a medical expert but like you I was diagnosed at a similar age and thankfully my kidneys and liver are fine too. I had a year of donating blood on a weekly or bi weekly basis which was exhausting but to prepare myself I made sure I was fully hydrated and that I was eating well. When they take your blood they take lots of good stuff as well so your body will need time to recover, I also drank coconut water as my potassium levels were low which can impact on energy levels. I know after a blood session I felt like I was dragging myself up the stairs and usually I can run 5 miles quite easily. I was told that I did not need to eat a special diet as this would not make much of a difference but I guess we all get different advice.
This probably isn't much help I know but I just wanted to say that donating blood can be exhausting especially on a regular basis but eat well, stay hydrated and don't plan on doing much that requires effort until your body recovers.
Good Luck,
Linda
Michael_45 Linda1967
Posted
Keano59 Michael_45
Posted
I feel your frustration.I was told by my gp I had hemocromatosis and had one defective gene and. Ferritin level of 497.She contacted the hospital to refer me but they refused the referral until my levels were tested again one month later.The second test came back for ferritin at 385 and because of that they decided because of nhs guideline of 400 ferritin reading I haven’t got hemocromatosis.My Gp has now back tracked and has now diagnosed me with CFS/ME.She referred me to Hospital for confirmation.They won’t confirm her diagnosis whilst my ferritin levels are high and I have to have a third set of bloods.I am so frustrated and just want to feel normal again.Every day is a battle with fatigue aches and pains and brain fog.
sheryl37154 Michael_45
Posted
The best advice about what to eat is in that cookbook. You will discover that often what drs advise is based on myth. There are very few (even rare) foods that are best to avoid, e.g liver, clams. Just don't have red meat every meal (like some I know) or every day - mix it up. I eat protein with every meal and as a snack when I can. I eat all the greens. It is not recommended to avoid foods that have a iron it (every food has iron in it anyway), or you will end up with low haemoglobin and become very weak and tired when venesected. In fact, you should not be venesected when your Hb is low. Avoid foods that have been fortified with iron like the plague.
In the book you will be advised to avoid Vit C or juices high in Vit C with meals. You will be advised to drink tea/coffee, a small red wine, and calcium foods with your meals. I find sugars and starches cause me to be very tired because we have difficulty in digesting them. I slump severely from fatigue after eating them and have to have a lie down - the floor will do! It took a while to work out what was causing it, then I read a research study which confirmed it.
I am surprised you were venesected with a ferritin as low as 72. However, people without HH have that level and they donate without any problem just not often - perhaps every 3 months.
I find that chewing sugar free peppermint gum gives me a lift. The peppermint wakes up the brain and I think the action of chewing helps. Disgusting habit I know and have never chewed gum before in my life (except as a kid) but I have to wake up my brain and body at times to function. If I sit still I go to sleep. Maybe sniffing peppermint oil might help, but that looks strange in public! Probably get arrested!
Check out the info on the Iron Disorders Institute website too, and there is a lot of research being done around the world. Just google your question. And communicate with your 'local' or country's hemochromatosis organisation. Maybe you can let us know how you go. Good luck with it.