Upped Phlebotomy to 2 times a month, what should I expect
Posted , 3 users are following.
Good morning,
I have just recently had my diagnosis of this..."thing" and did my blood work. However, the DR. said it is not dropping like they hope and want me to up to 2 times a month now. I am not concerned with this however, I do have some questions from those who may have done this already.
- Will I feel more exhausted since the required wait time is 8 weeks for each donation, but now we do it every 2?
- Will I notice weight loss? I try and eat as healthy as I can with minimum iron. I used to be very active however, my back injury from the military had stopped that dead in its track. So now I just go for long walks. Bout all I can do any ways.
- Do any of you feel sick after starting this period of blood donations? Fatigued? Anything?
- Will all this intensify if it goes to once a week (which is a possibility according to the DR. )
Thank you for your time in this discussion!
0 likes, 8 replies
tom_70042 usamp1212
Posted
good luck with it if u can stay on fortnightly do that
i had one every week for 20 weeks it floors you fatigue like nothing else and aches all over back hips
but in the flip side got down to sub 50 and now i am on three monthly maintenance
but its exhausting gets u there quick but has its issues
usamp1212 tom_70042
Posted
Yea that is what I was worried about really. However, it is one of those necessary evils. Guess I will have to implement more coffee into my life 😃
sheryl37154 usamp1212
Posted
You don't give us essential details. They make a difference. Homozygous C282Y, or homozygous H63D, or compound heterozygous C282Y/H63D or heterozygous ? What was your TS% and Ferritin levels at diagnosis? Male?
Do not reduce your iron consumption unless it is supplemented iron, and fortified foods. You actually need iron to keep your haemoglobin up.
I am homozygous C282Y. I had weekly for a while and I can't say I felt any more fatigued and body pain than before I was diagnosed and started vx. Dr took 9 years to diagnose (finally in 1998) so a lot of damage was already done which won't go away. I have been in 3 monthly maintenance for a long time now and I keep going even though my ferritin level is in 20s. Finally my TS% has come down but I don't want it to increase because with that comes the body pain. My haemotologist says having a ferritin level in the 20s causes no harm at all.
My husband is homozygous H63D, and our son is compound heterozygous C282Y/H63D so I have had a lot of experience with our varying issues.
The important thing is to keep your Hb up. Low Hb will cause problems with vx and if low you should not be venesected, which is not good because you need to get that ferritin out of you.
Weight won't be affected unless you are eating less and differently. Get rid of any foods that involves sugar and starches (potatoes, bread, pasta (sob!), etc) which become sugar. This will get rid of or prevent fatty liver. You should notice a weight reduction in the abdominal area doing that.
Ask for blood tests of Vit D and B12. These are important. Tablets are a waste of money. Get a practitioners' brand of Vit D3 forte drops, and B12 injections are most effective.
I am sure you were told to have something to eat and lots of fluids before vx, and fluids after. Blood banks usually offer something sugary after, dark chocolate is best.
Good luck and keep in touch.
usamp1212 sheryl37154
Posted
I am overwhelmed with your things you pointed out. I had no idea there were other types of the things you said above. They just told me I have the condition from my father.
I am male and if I am correct, may be off like 10 or less, my ferritin was around 1600 and I am a male. I am going into this blind because it took forever to find a DR. that really wanted to deal with this. I started at a cancer center, scary. They moved me to a DR in my home town, who stated I have to set my phlebotomy appointments myself. Then they never called back. Now I am with a GI DR who is actually helping me and I give my blood to the blood center because it is free and helps people.
I have the blood test. Let me get into my account and I will let you know what they are as soon as I get them.
I will keep in touch and I apprecaite the response! I will be cutting those food outta my diet because the DR stated the liver enzymes I have are really high. Don't really wanna kick the bucket at the ripe ol age of 31
sheryl37154 usamp1212
Posted
You have been given insufficient information. If you have haemochromatosis, you have to be homozygous or compound heterozygous, which means you have to have inherited one gene from each of your parents (not just your father). It does not sound like you have had a genetic test to confirm it. This is necessary.
1600 is very high for age 31 but your TS% is important too to see if it fits the category. High levels of ferritin can also be caused by inflammation, infection, malignancy, alcohol and liver problems can be the main cause.
I have my vx at an oncology centre because they are the only ones patient enough to try a few times when my veins go feral. Venesections are better than having chemo.
Someone with knowledge and experience should be monitoring your blood levels and deciding what frequency you should be having vx. I hope your GI is doing this even if you have to make the appointments yourself, which I do too, but a haemotologist monitors my blood levels.
tom_70042 usamp1212
Posted
best advice always from Sheryl you would do well to follow her lead she is an expert in the field a pleasure to know on this forum
sheryl37154 tom_70042
Posted
Thanks Tom. That is very generous of you.
miller.jones usamp1212
Posted
No one can answer this each person is different but from my experience you shouldn't have any problems unless you do have other underlining medical issues (make sure you eat well and drink enough electrolytes this is what a lot of people do not do water by itself is not good enough)
This has nothing to do with weight loss and if that is something you want to do with limited mobility eat a healthy low carb diet do not avoid iron foods most that are healthy like meats also contain a lot of other very good nutrition we need and you will be limiting yourself by cutting them back (it's a life long condition only avoid food which adds it or supplements with it not natural foods)
I know some people get anxiety which causes those problems but if you are calm and eating plus drinking enough you will be fine (I found people eating low carb diets to recover lot better as well)
It depends on your numbers and how much you can take some people have no problem others can not do more than 1 every two weeks at the start it's about getting data for yourself and then they will know which treatment plan is best.
The one week sessions is pushed on people with very high numbers because of the risk of those numbers being so high so they look at it as if say your numbers over 1000 need to get that down quickly before damage is done.