Symptoms and phlebotomy frequency.
Posted , 7 users are following.
Hi,
I am a 26 Y/O male from the UK.
I was diagnosed with haemochromatosis approx 18 months ago. My serum ferritin level was around 581. I had blood removed every two weeks until I reached a normal level of approximately 50. At this stage I was put on to phlebotomies every 4 months. At the first phlebotomy after the 4 months my SF was up to around 170. I had an incline it had creeped up because I started to feel fatigued towards the end very similar to how I was feeling before treatment. I resumed phlebotomies every 2 weeks until my SF was back to around 50. At this stage I was schduled an appointment for 3 months time.
I am in a similar situation now, it has been approx 11 weeks since my last venesection and although I do not know what my SF is at currently, I do feel the symptoms of it being elevated.
What I want to know is, will they put me on a more frequent programme of getting a phlebotomy every 6-8 weeks if my SF has increased again if I request this? I feel this would be a good balance for me instead of the longer intervals, then having to go every two weeks to get it back down to normal again. Is it normal to experience the symptoms I mentioned of general fatigue and lethargy even at relatively low iron levels compared to some?
Any advice or input is appreciated.
Thanks
1 like, 18 replies
michael1960 Chris1479
Posted
It is a well known fact,that Fatigue and Constant Tiredness is a Big factor for those Suffering from Haemochromatosis.So, in my Views, maybe suggest a Weekly Visit,it will take it out of you,but worth the time spent,as you do get to feel a bit better,altho sometime it can really Knock you for six,and you feel like a Wet lettuce,very drained,and very tired. Suggest a level check at about every 4/5 session. And try to keep any high Iron content Foods out your Diet.
A 55 yr old UK male here.
Do you also have Ultra Scans Done on your Liver and kidneys as well ??
Chris1479 michael1960
Posted
Being relatively new to this,
Chris1479 michael1960
Posted
Being relatively new to this, I wasn't really sure if it is possible for me to dictate when I can give blood but I will see how my level is next week and if it is in fact elevated I will definitley ask to be put on possibly 6 week intervals to see how I get on.
I realise my level isn't overly high but it will affect us all differently. I know that it was night and day for me once reaching normal range as I had so much more energy. Previously I would have found myself falling asleep early during weeknights and really struggling to get up for work in the mornings. I can feel that re starting again all be it not just as bad.
The diet is a good point and will have to consider it more seriously in future.
Thanks
sheryl37154 Chris1479
Posted
terrihigashi Chris1479
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Bjbarbour terrihigashi
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sheryl37154 Chris1479
Posted
Another factor in this is your TS%. How high is it generally? Prof Pierre Brissot writes that TS% greater than 75% is toxic. As mine is generally about 100% even though my ferritin level is kept between 34 and 60, I still feel fatigue, body pain, etc. I have worked out that I have 13 days good days after a venesection then it starts to build up again.
Last year I started taking 100mg aspirin a day and that gave me great results. Apart from thinning my blood and making phlebs easier it is an anti-inflammatory and the body pain disappeared for a long time.
I don't know how to reduce TS%. I have now found anything on this. For some it naturally decreases with phlebs.
Try to get a hold of the book The Hemochromatosis Cookbook from the Iron Disorders Institute from your library or ask them to get a copy for you. Good info on why it is ok to eat most foods and how to try to reduce the uptake of iron. E.g. drink tea, coffee, small red wine, dairy (calcium) with meals. Avoid vit C with meals, including juices full of vit C. Also check your cereals, breads etc to make sure there is no added iron.
Chris1479
Posted
I am scheduled to go again in 3 weeks and will take it from there and see what my ferritin is like after that appointment. What is apparent to me is that 4 month and 3 month intervals have both been too long for myself and I will opt for 2 months between treatments once I get my ferritin back down again.
valerie06033 Chris1479
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The Transferrin Saturation test is usually used as a diagnostic tool for HC, and then afterwards IGNORED. Oh but it shouldn't be! Iron is an absolute Free Radical Poison in your bloodstream if not properly BOUND. Transferrin is the binding agent in our bloodstreams which carries iron SAFELY to where it's needed (to build hemoglobin, etc).
If your "Transferrin Saturation" (TS) test shows 70%, what that means is, 70% of your available Transferrin is being USED at that moment, is presently BOUND to iron in your bloodstream. Now that 70% is much higher than the general population... Most people would only get that high of a count if they just ate a nice juicy steak. But YOU have that fasting. NOW THINK... You eat a juicy steak and all of a sudden--there's not ENOUGH transferrin left in your bloodstream to properly bind it. If you were to take a TS test right then--it would probably come in flagged in ALERT status. Even above 80% means loose binds are falling... But if you get up to 100% (which you would in my example), that means you definitely have at least SOME iron going free radical through your blood stream. How much is unknown--because they can't measure above 100%! Probably LOTS of free radical iron after a high iron meal... a POISON that's destroying cells randomly wherever it goes--Including brain cells. The immediate symptoms of this iron poisoning that happens to us perhaps on a daily basis, for me is extreme fatigue, nausea when it’s really bad and a feeling of “not wellness”, and extreme brain fog.
Incidentally, this is why Doctors can't prescribe TOO MUCH iron to anemic patients. You'd think the more the better, right? NO because it can't be safely transported in the blood. If you have a anemic friend who takes iron pills--warn them! Two pills is NOT better than one! Even an iron deficient person can't safely take too much iron.
Ok but you & I already have too much iron (and often low transferrin counts as well--just the transferrin itself (not the saturation, which for us is high for sure). Doctors worry about the iron build up in our organs--which is what's been STUDIED and proven and that's great that they try to get it down by giving us phlebotomies. But they have no idea the TS issue is causing us brain damage because it HASN'T been studied, researched and proven yet. But we ALL KNOW we have brain fog!
Additionally, the phlebotomies themselves cause transferrin saturation episodes! We need them, but there definitely can be this side effect.
Phlebotomies tend to make the body “OVERREACT” to the blood loss. It's as if the body says, "Wow! Blood loss! Let's take iron out of storage and rebuild this blood NOW!!" Problem is it takes TOO MUCH iron out of storage--And all of a sudden you’re in a TS ALERT status! (Sometimes 100%, I’ve documented by blood test). No Doctor tests your blood AFTER a phlebotomy--they test BEFORE and that's why few even know this is happening. (But my hematologist confirmed it is a normal phenomenon, but there’s nothing they can do about it so they ignore the issue). I'm convinced that's (one reason at least) why some people feel bad after phlebotomies, and have weird bad symptoms. AND why often their arthritis and some other symptoms of HC IMPROVE by the end of their series of phlebotomies (stored iron issue)--but brain fog DOESN'T unless the numbers are brought down very low (a TS epidsode issue). NOT to say we shouldn't get the phlebotomies, we have to. Otherwise the iron build up slowly kills you. And the good news is...
Once you’re below 50 stored iron (ferritin), if you keep it under 50, you’ll gradually recover from many of your symptoms! The brain and some of the free radical damage can start to heal. AND YOUR TS LEVEL FINALLY DROPS!—So that the saturation episodes happen much less frequently and less severely! THAT’S WHY you start to feel bad again when your numbers start climbing!
For some reason, once your stored iron count goes low enough (for me about 40 Ferritin), the body stops releasing iron from storage so readily, and your typical fasting transferrin saturation level will drop. Mine goes from 61% down into the 30’s! But if my Ferritin goes above 50, it’s back to my normal 61-63% and fatigue and brain fog issues resume.
By the way, Vitamin C (and MSM) does the SAME thing! Vit C not ONLY causes you to absorb more iron from your food--but ALSO somehow effects RELEASE of iron stores-- elevating TS. I tested this only once so far. Took 1000 mg Vitamin C on an empty stomach during the night; TS test in the morning. Where normally my fasting TS is 63%, that morning it was over 80%. Interesting (msm did the same thing). So I'm planning to do more "self-testing" soon... You can also do your own testing by a prepaid Transferrin Saturation test (only about $30 at online blood testing sites; just start ordering tests yourself and be your own health advocate). The doctors usually only pay attention to the stored iron.
Diet--it DOES matter keeping diet low in iron, because high iron meals will send you into transferrin saturation episodes! But if your counts are down, you can get away with a lot more. Best Wishes!
sheryl37154 valerie06033
Posted
As you say TS% is important. Prof Pierre Brissot of Rennes, France reports that TS% >75% is toxic but does not exactly expand on that. That is how I have described how I feel - toxic, even though I have been deironed for 17 years, having been diagnosed in 1998, after 9 years of terrible symptoms undiagnosed.
I have just read a research study by some Scandinavian researchers who have come to the conclusion that homozygous C282Y with TS% greater than 70% have more cancer than the control group, particularly women.
As my blood is more than than not, thick and black, hard to venesect, I decided to go on 100mg aspirin per day this year. This made a huge difference not only to my venesections but reduced all my levels considerably. I felt like this thick blood (full of iron particles) were clogging up my cells.
Calcium is supposed to reduce the uptake of iron, and is best consumed with meals, as does tea, coffee etc. I have just read in a publication by Medifocus that sugar increases the uptake of iron. I have to read more on that, but it may be indirectly. It is now known that sugar and starch consumption leads to fatty liver which increases ferritin iron levels.
See if you are consuming sugar or starches (e.g.potatoes, bread) in some form with your red meat which could be causing your spike. Researchers do not recommend eliminating or reducing iron rich foods, just don't have red meat every day, and clams are worse than red meat/liver.
Earlier this year while I was taking aspirin, I was also taking MSM in order to get a obtain a better feeling of wellbeing. At the same time, my levels reduced to their lowest, including my TS% which is the opposite to what you have experienced.
There is evidence of iron deposits in the brain, as proven by MRIs and autopsies. Researchers are working on it but cannot replicate it on mice, which is all, it seems, they can use. They know about it, but until they can prove it the acceptable way, the medical profession ignore it.
It is known that iron can breach the blood brain barrier (try saying that fast), and it affects the hypothalamus as the hypothalamus 'tests' our blood. When the hypothalamus goes awry, it causes a lot of problems for us. Underneath the hypothalamus is the pituitary gland, and iron deposits commonly affect that too.
After being given beta blockers for severe arrythmia caused by HH, my brain went into a total fog and I was unable to utter more than two words as, though the words formed in my brain, they were lost by the time I tried to articulate them. It seems the beta blockers dilated my blood vessels, including those in the brain and let in the iron particles. It took a couple of years for me to able to speak sentences.
The original fatigue and body pain has never gone away, only relieved by not working any more. I had to stop years ago. Too long a story to go into all the problems HH has caused.
So-oo looking for answers.
Chris1479
Posted
Instead they carried out a blood test and told me to phone for the results. It came back that after 3 months my ferritin was only at a level of 29. (up from 24) I found this strange as I was convinced it would have crept up as has been the case in the past. My two previous 3 month gaps had risen to 170 and 102 respectively. I feel similar now (symtoms of fatigue) as I did when my ferritin was elevated. I do not feel this way at all when I am giving blood at more regular intervals. (ie every 2 weeks to get ferritin back withing range)
Any input appreciated as this is still relatively new to me.
Thanks.
sheryl37154 Chris1479
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Also, what about your Hb? Although it should be ok after 3 months.
Chris1479 sheryl37154
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sheryl37154 Chris1479
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My haemotologist will print it off for me when I ask, or my gp will. It is important to have these results so you can self evaluate, and note how you feel at these different levels, and you will find your optimal level. I do have a lot of results missing, because I did not think of it in the early stages either. There was a lot to learn.
Chris1479 sheryl37154
Posted
In the mean time, do you know of any supplements that are genuinely of benefit for someone with our condition? I have considered adding a good green tea extract supplement to my diet.
sheryl37154 Chris1479
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Well they say drinking tea, coffee, and a small glass of red with meals helps reduce the uptake of iron, while vit c promotes the uptake of iron, which means avoid OJ or any high vit c juice with meals. Juice generally involves many fruits, while eating tomatoes, capsicum and other foods within your meals is not so much and necessary for healthy eating anyway. We (my husband has it too) generally have cheese after dinner, or plain greek yoghurt for desert. A dash of pure cocoa powder makes it choclatey without adding sugar. Dairy includes calcium which is also supposed to be good for reducing the uptake of iron. So take your calcium tablet with/after your main meal.
Having said that I have also recently read that tea, coffee, have little to no effect on uptake of iron. I would rather just do something rather than nothing.
Ask for Vit D and Vit B12 blood tests. These are often a problem with people with HH. I had a problem maintaining Vit D even though I live in the tropics and took double calcium/vit D tablets. Dr put me on Vit D3 drops forte, and my vit D level climbed immediately. I take 4 drops per day.
My husband was very low in Vit B12 (even though he eats meat) and the vit B12 tablets was not effective for him either. After depleting to having severe symptoms which took many years to find out why (e.g. severe depression, weakness, lack of motivation, etc. and antidepressants giving him very negative results), his bloods revealed how low he was in B12. Only B12 injections help him. His second weekly injection had him return from the dr whistling a happy tune and talked to the neighbour for the first time in many years. It was so amazing, I wanted some too, but my B12 levels are normal.
So you can take all the tablets in the world and they may not give you any benefit at all if your body does not want to absorb it in tablet form.
While we are told not to take vit C, we do need antioxidants, and I find last thing at night when hopefully my stomach is empty, a vit C keeps away sore throats and colds, which I tended to get when I did not take it.
Check if your good cholesterol is low, and work on improving that. Coconut oil, avocado, etc. (you will need to google).
We do take a good daily multi vitamin and omega-3, and vit E is often said to be best for those with HH. Now and then I treat us to CoQ10, and Reservatrol (cause they are expensive). It would be good to know just how much goes down the loo though.
A good health result was when we eliminated sugar and starches from our diet including breakfast, and just focus on a normal serve of any type of protein with lots of green vegetables. There are some white vegetables which are low in carbs too, and cauliflower mash makes a great subs for potatoes which we no longer eat because they are so starchy (ie. full of sugar). It will reduce your fatty liver, and in turn, reduce any ferritin that is caused by having fatty liver. Snacks always include protein too, but we generally don't need a snack now between meals.
That does not mean, if someone offers me homebaked goodies, that I refuse them. Of course, I have to be polite!!!
A good book to read is "The Hemochromatosis Cookbook" - should be able to get a loan from the Library, even if they have to order it in. It is very informative, even if not for the recipes.
Chris1479 sheryl37154
Posted
Thanks Sheryl for all that input. I will certainly take it on board.
As things currently stand I am left in a bit of an awkward situation. I was sent away from my last appointment without a having a venesection carried out due to my levels being 'normal'. I have an appontment now for a further 3 months away and I feel this is too far away due to starting to feel consistently more fatigued than normal. This will leave approx 27 weeks between venesections for me. Since starting treatment and reaching maintenance I have never went that long between venesections.
I'm not too sure really what my options are apart from sticking it out and waiting till my next appointment in September :-S
sheryl37154 Chris1479
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That is terrible for you. It is a low Hb that should prevent you from having a venesection. I don't know the ins and outs of UK health, but I seem to have a fair bit of autonomy with my venesections. I have a very good haemotologist, who I guess recognises now that I know how I am feeling and what is best for me.
What I have found that when I had a venesection when my ferritin was only 27, it did not necessarily reduce my ferritin too much, but made a good reduction in my serum iron and TS% which never used to budge. My Hb was still good. I am feeling like a truck hit me when my ferritin is in the early 50s, and I get arrythmia when I hit 80.
I have heard you or someone say that you have to wait till your ferritin is at 50 before you can donate blood. We don't have this rule in Australia. Besides there are a lot of people donating blood who don't know they have haemochromatosis. It is not a disease. But the Blood Bank does go into a tizz if you tell them you have HH, and they want permission from your dr to venesect you.
No harm in slumping into your dr saying you can't continue/work while feeling this way, you need your blood taken, or something along those lines.