Posted , 5 users are following.
I have recently reached my target of under 50, great I thought but I am so tired and my knees ache, they have never ached its really strange. My husband thinks it may be because I am a lot lower in iron and why l am getting tired, not sure about the knees. I had hoped to feel better but actually feel worse. Anyone else noticed this please
0 likes, 9 replies
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deb94549 youngatheart1
Posted
Hi, after 44 phlebs (one a week) I am down to 86. I had one more and will find my level Tues. I too feel more tired and weaker. Cramps in my toes, heart beats faster when i do little more activity. Thinking its due to being on the lower end now of iron levels. I kinda feel like I did before i was diagnosed. It's weird.
sheryl37154 deb94549
Posted
My haemotologist would have moved me on to less frequent vx long before where you are now. It is not your level of ferritin, but the speed at which you are being venesected.
sheryl37154 youngatheart1
Posted
No. How often were your vx? Were they less that 2 monthly? My ferritin has been about 20-27 for a long time now, but my serum iron is within range, my TS% is finally within range (<45%), my haemoglobin has always been good. My haemotologist just told me the other day that those levels are not harmful at all.
Even though your ferritin level may be 50, if your TS% is still above 45%, this is what causes problems. So it is important to keep going to get that level down. Go on to maintenance schedule of 3 monthly. Do not restrict your diet of foods with iron in it, with the exception of supplements and iron fortified foods.
Your metabolism may be changing so be aware of foods that will cause inflammation.
Tell us how you go.
tom_70042 youngatheart1
Posted
yes sure did i started at 1200 and had a regime if weekly venesections august to december
i hit 31 in december remained at 32 in january feb was 41 and now in april am at 47
been told that my new target is 100 great no vs for another four months last one was in december
but the effects are dramatic sore hips and back and joints in fingers and hands stiff
i find it harder to walk now cant play golf anymore despite doing physio exercises
joints in hands look as if they excessive fluid so that may be a side effect yo blood thinners i am on too riveroxaban
its not easy but i am reconciled to do what i can do now not what i used to be able to do
i am told i will get stronger again as levels change hope so
good luck with your health and journey
any advice on foods that cause inflamation would be much appreciated
thanks Tom
sheryl37154 tom_70042
Posted
Hi Tom, foods that cause inflammation depend on the person. You may have to google and trial and error. But there are foods that help decrease inflammation. They are Omega 3 oils, NOT Omega 6 which causes inflammation, olive oils, foods that are good for the gut bacteria (I remember asparagus being one), yoghurt, kefir, probiotics (for at least a month). Turmeric is one which is said to reduce inflammation but there are better ones and I prefer to keep my teeth white.
Sour foods like saurkraut, pickled cucumber cornichons, etc. However, if you are blood type O like me, they are not good for us. I am not even allowed to eat avocado but this is my cheese and butter instead of dairy. Dairy and/or grains could be your downfall. But some foods which are not good for Type O are good for Type A (whose metabolism likes grains). Definitely get rid of sugar foods out your of your diet - isn't life mean?
But if you are low in Vit D, buy a practitioner's brand of Vit D3 forte drops which work better than tablets. Also Vit B12 can be difficult to be absorbed by some of us, and tablets cannot always be absorbed, so try to get B12 injections.
It seems that some drs (haemotologists) still don't know how to pace venesections. Weekly till you get to 31 is not good on your body. Unless you had a ferritin level of 4000 or so, your vx should have been slowed after a month or two to fortnightly, then monthly, then every two months. Going back to 100 is not a magic formula. It might not suit you. What is your TS%. If this is still high, then you need to keep getting 3 monthly vx to bring your TS% down. It is the TS% that causes problems at this stage (referred to as being toxic if it remains high for more than 6-8 months after de-ironing by a French research team.)
The French research team recommends CoQ10 and Vit E to assist our mitochondia to repair. You can at least try.
sheryl37154
Posted
I have been reading up on Boron for other reasons but it says that Boron is good for relieving inflammation and osteo-arthritis.
Google "There is nothing boring about Boron" and make up your own mind. I purchased mine from a Compound Chemist which should be good quality. I am about to start and I am hoping for good results to release bound hormones.
miller.jones sheryl37154
Posted
A lot of omeag 3 oils should be avoided they are not that good for you as claimed to be and have found to contain some very harmful stuff if you need omega 3 get it from food directly.
Nobody really knows what is good for gut bacteria not enough study has been done on it and people that claim to know are complete false studies when you read the papers.
No grains are good for anybody the same with wheat.
I agree cut the sugar out is a must also carbs people think sugar is bad but carbs are fine.
Dr at times just go by what they are told or given as guidelines this is the problem with % of them which is why each person needs to keep log of treatment and if it effects them and then change it.
There is a period when your number drop the body fights back for some people this can be very aggressive causing lots of pains etc it should clear up after some months when getting used to lower iron numbers (not everybody is the same either a target number is used for everyone but not all are the same some people are great below 50 other awful so its trial and error really if DR tries pushing you can refuse)
sheryl37154 miller.jones
Posted
The problem with omega 3 (as in wild salmon oil) is that research has found that benefits are only proven when a lot is consumed. I agree there are some bodgie brands out there so we need to check up which formula is true.
There is a lot of research now being done regarding gut bacteria but it is trial and error for most of us.
Some people thrive on grains and others don't.
There are carbs and there are carbs. I am talking about the starchy carbs, mostly in vegetables which grow under the ground whose carbs convert to sugar in the liver. Carbs in other vegetables do not increase sugar in the liver, causing fatty liver.
There is a reason why reduction of ferritin to 50 is deemed beneficial because that is when it is expected that all old stored ferritin is drawn from organs. Then it is possible to allow it to rise to whatever is a comfortable level. A level of 20s is comfortable for me because it keeps my TS% down. A high TS% which continues for more than 6 months after de-ironing (<50) is a problem and there is now a good amount of research on this (particularly by a team in Rennes, France).
There is still a lot to be learnt by drs in regard to treatment of haemochromatosis and I shudder at some of the stories I hear.
youngatheart1
Posted
Thank you for your replies. My venesections were fortnightly for 7 months, occasionally 3 weeks but never longer. They only took 200ml at a time from my hand via suction as I have bad veins. So probably equivalent to 1 a month. I feel worse than before it all started and my knees are agony. It may be as mentioned that I am getting used to the new me. Have an appointment with haemotology in about a month and will ask him. I will also be having a full blood check to see how my levels and saturation are going before I see him. Just feel a bit sad as expected to feel wonderful after going through all those vs but sadly don't. Thanks for your replies