Question on the frequency of phlebotomies.

Allergies, blood and immune system
1

Hello,

I have the homozygous c282y gene and I have HH. I've had 3 phlebs in since June 20th of this year - about once every 8 weeks per my doctors orders. My iron level has come down from 218 to 164 (the healthy range Ive been told is 50-150) so I am close there. Iron saturation is 53% so I'm almost in range on that as well. Only 3% off from normal.

My ferritin however was 597 and rose to 602 as of September this year. 

I saw a Hematologist today and she reccomended that I change to weekly phlebs and that what I am doing now won't be able to solve the problem (high ferritin levels with phlebs done  every 8 weeks won't get the number into range.) The doctor wants me at 50 and then we start maintenance. 

I'm not crazy about needles or blood but I am willing to do what it takes. All of my 3 phlebs so far I'm ok during - just some anxiety when its happening but not much more. Afterwards sometimes I have felt incredible the days following, sometimes I feel blah but it gets better.

For those of you who have done weekly phlebs - can you tell me your experience? How did you feel during? How did your weekly recovery go? What kind of diet did you eat? Anything you can share that can help me get a better understanding of what the doctor is looking for will be helpful. Weekly phlebs sounds like a lot of blood to give in short periods of time so I need more information on what to expect physically mentally emotionally.

Thank you. 

2

I did weekly phlebs for a few months after my diagnosis.  I was glad of them as I had suffered severely for 9 years before diagnosis and did not suffer any problems having phlebs and walked away happily.  I see phlebs as much better than having to have chemo.

However, I did find it best to keep my feet raised while having the phlebs - via the special chair of course.

It is a good job you saw a hemotologist but I think my hemotologist would have requested every two weeks for a level like yours - not very high in the bigger scheme of things.

However, go to Iron Disorders Institute - helpful forms and charts - hemochromatosis reference chart for good guidelines.

As you are homozygous C282Y your hemoglobin should be able to cope with weekly, but if it doesn't, then you should drop back.  Try to get them to do a hemoglobin blood test beforehand.  It is only a finger prick test that can be done immediately.  This is what blood banks do before taking a donation.

Don't reduce eating foods with iron in it - it is not recommended by those who know about hemochromatosis.  Look for "The Hemochromatosis Cookbook" in by Cheryl Garrison in your local library for heaps of info about why it is ok to eat red meat and spinach.  But do not have OJ or vitamin C supplements with your meals.

Tea, coffee, milk, yoghurt, cheese, calcium supplements are best eaten with a meal including iron foods (they all have iron in them, actually) to help reduce the uptake of iron.

No doubt you would have already been told, drink plenty of water beforehand and also eat a snack if not just after a meal.

Ask for copies of your blood tests so that you can see how you are progessing for yourself.  Make notes of how you feel after the phleb.

Also, contact your country's hemochromatosis association for all information they can give you, send to you, refer you to, etc.  Support them as they are working for you.

 

3

Hello,

I had weekly phlebs for eight months solid. My ferritin level was over 1300 but we got down to sub 50 and I have been in the maintenance phase for two years. I now have 2 or 3 phlebs a year.

I've been a Police Officer for 6 years, working shifts. I was lucky enough for the job to allow me to work Mon to Fri, 8-4 with my phlebs on Friday afternoon and the weekend to recover. I tended to feel tired the following day as apposed to on the day.

Once I was down to sub 50 I went back to work as normal. I'm not a massive fan of needles but it got easier each time. I don't recommend changing your diet too much; trying to avoid iron rich foods could result in you missing out on other essential minerals, vitamins etc. The phlebs will remove more iron that a diet can.

Best of luck.

4

Thank u very much I really appreciate your input.

5

Thanks for your input. Did the ferritin come down on a linear format or was it up and down etc?

6

Hi I went to the institute for iron disorders like you reccomended and looked over the charts. I should be at a pint a week. Thanks for helping confirm that for me.

7

Hi

By staying at 8 weekly you are only prolonging your treatment,

Weekly can be very draining, but we are all different, tell them you

Would rather start fortnightly to start??

Your iron+ferritin need to come down.the longer the iron stays in your

Body the more likelihood of organ damage arises.

Foods cut out red meat, seafood,fortified cereals, orange juice, vitimins

Dark green veg,

Add temeric, black tea,milk, a lot of people are singing the praises of

Ip6,you have to be proactive and help yourself if you want to get to

Maintenance stage,none of us want to endure this treatment but we

Have no option,

Cheers philx

8

Some weeks the levels would drop dramatically, other weeks there would be little change. On a couple of occasions my haemoglobin levels dropped so I would skip a week of phlebs just to recover.

9

Hi 

Each of us are different. I did them weekly and even a couple times twice a week when I was deironing. I always feel much better after, even now while I'm in maintance and doing them every 8 weeks. 

As the phelobotomies are something you will be doing all your life it makes sense to me to find the best schedule for you because one size definately dosen't fit all...

10

hi, my husbands ferritan level was 1700 and that was 3 years ago and he went and had weekly phlebs for 6 months and it went down to 23 , he has had no phlebs since and he has 3 monthly check ups of which is now 54 and they are not worried as they are moving the ball point to 100 please don't worry my husband is fine , they have told him diet has nothing to do with condition he is like you he carrys the gene his 2 brothers don't neither does our son so please don't worry you will be fine he has always been fine after the blood taking worry can make it worse. keep well and try not worry if you have any family get them checked sooner that later x

11

Hi deidre

I'm a bit confused hear,I was told once you get into the maintenance

Stage 50,I would then have to donate blood, 5 to 6 times a year for

Life,to keep iron levels down otherwise they could start to climb

Again,so if you are saying your husband has no further bloods taken

Away since he got into the maintenance stage,I will have to question

What I've been told???

Cheers philx

12

Hi I have been doing phlebs every two week for a ear started at 850 and down to 86 heading towards 50.  My Hemo doctor suggested using turmeric and magneseum cream every day when I started to use the creams my iron dropped an average of 28 points a month .  I also receive a bag of saline before my blood draw and drink tons of water before . Like you there were times I felt full of energy after and times I needed to rest but as I get closer to 50 I have more times I am full of energy.  I never do vitamin c with a meal and I stopped drinking our iron water since we live out in country.  I enjoy these sessions in our small town even the dieticians were lack of information on the disease

13

Hi philx

Yes, as I have said before - not all haemochromatosis is equal.  It would be good if we identified our HFE genes with each first post, and our current IS levels, so that we know the background.

Perhaps deidre's husband is not homozygous C282Y which is the most aggressive, and H63D tends to only very slowly absorb iron, if at all, once the buildup has been reduced.  Research specialists even say compound heterozygous C282Y/H63D does not absorb too much, if at all - although my experience with people with it tell a different story, including my son.

 

14

I tried weekly, but I was exhausted all the time, I now go every two weeks and that is much better. Try weekly and see how it goes, you my be able to tolerate.

15

Hi mary, what you say about turmeric is very interesting.  I recently attended a conference on haemochromatosis with international and local researchers.  There was a short, sharp reference to turmeric to the effect that it was a myth, and I have not come across it in all the research papers about haemochromatosis that I have read.

I accidently come across a website run by a naturopath who says the same thing as your and sells the turmeric and magnesium creams, plus others.  Previously I was aware that it is said that curcumin (turmuric) was good for inflammation, Alhzeimers, etc.

I had started to put turmeric in my food (sauces, etc), but my dentist told me that turmeric was the worst offender for yellow teeth.  So I would rather have white teeth and leave the iron chelation to my venesections.

I just had a look at a research study of iron overload and turmeric on mice published in 2014.  It ended with "We conclude that addition of curcumin near the maximum achievable in the diet was not effective in decreasing iron overload in this mouse model of hemochromatosis. High levels of dietary curcumin and turmeric appeared to increase, rather than protect against, the hepatocarcinogenic effects of DEN."

Conversely, including two of the above researchers, a research paper published in 2008 concluded "Curcumin reduced iron-dependent oxidative stress and iron toxicity in T51B cells without blocking iron uptake."

It is good that it is working for you.

Iron in your water - I do wonder how common that is and whether residents have been made aware of it.  A very high number of residents in a town in my country were found to have high levels of iron in their blood.  Passing through that area, we could see the iron stains on the sides of houses from the sprinklers.  In 'normal' people we are supposed to eliminate all iron above our requirements, but obviously, like iron supplements, as opposed to food with naturally included iron, mineral iron is taken on board by the body.  Actually it is mineral iron in food too, but vegetables, etc, also include phytates, oxilates, etc that reduce the strength of the iron, unless we deactivate it by consuming vitamin C with our meals.

There is certainly a lot to learn about haemochromatosis, and those who do not have it, are not likely to bother.

 

16

Morning sheryl

My genetic result was c845g>a.p(cys282tyr) hfe variant

I would have donated blood once in maintenance no matter what

The results were???mind saying that the transfusion centre have

A ruling you cannot donate blood if over 65,unless you have donated

Previously, I'm 66 (67 by the time I get to maintenance).

Cheers

Philx

17

In Australia, it is 70 (71?) unless you have been donating beforehand.  A dr can authorise venesections earlier than maintenance stage, even weekly and that usually puts people into the system before age closes in.  Is that possible where you live?

However, if we take certain medications or our ticker is playing up, the blood bank will refuse to venesect unless a dr is present.  Pathologists will venesect for an annual fee, reduced for pensioners.  I go to the Oncology Day Unit, as I got fed up with the blood bank being so unreliable, and especially because the Oncology Day Unit will keep trying (at my insistence) when my veins are non compliant.

 

18

Hi, my situation is that I have a high ferritin level, 2000 or so, and because the level would not show steady improvement whilst I was giving blood fortnightly, for some 15 months,, I decided, to just give blood once a month.  However, the Consultant wrote to me almost straight away and said, no that won't work, you  have to give blood weekly and I have been doing so for the last 12 weeks and this week, my ferritin level increased by 300+ so I just wonder when, and if, it is ever going to show a steady reduction and, no-one has answered the question.   Giving 500ml of blood weekly, what affect does that have on the body generally.   My diet is very good, so say the heath professionals, avoiding all the food and drinks that are not good for people with HH but that doesn't seem to be doing the trick either.    Weeklty blood lets can be draining but you just have to persevere and hope that things improve and watch your diet, no greens, shelfish and there is list of avoidable foods online and the Haeomchromatosis Society are excellent if you have a query, you can ask them by email and they will reply swiftly.   Regards Glyn

19

Hi Glyn

I'm really sorry for your plight it must be soul destroying to be

Going up with levels more that some people are asking questions

about,but as you say we have to take things as they come,

Very best wishes for your future treatments and I hope they find

An answer somewhere

Cheers philx

20

Good Morning, thanks for your comments, I do appreciate them.    Sorry if I sound a bit low but 12 weeks ago when the Consultant says, you will see a difference giving blood weekly, although not in the first couple of weeks, but in my case, the ferritin level is still going up after 12 bloodlets and I am still waiting for an appointment to see the Consultant, having asked months ago to speak with him.     I have never actually had a consultation with  him and I think it is about time he answered some of my questions, if indeed he can.   It seems not enough is known about Haemochromatosis.  I emailed the Haemochromatosis Society and they were very swift in their reply and agreed that my Hb, my transferrin sats % and ferritin levels were all too high and further investigation is needed, but as I say, I am still waiting for an appointment.   Every week I ask but no luck so far   I shall keep trying, best regards Glyn