Has anyone been diagnosed with anemia? And experienced falling, tripping, rolling out of bed or any similar situations. We can all say that could happen to anybody, but it has happened a little too much to me.
Seeing a hematologist next week; of course, he will want me to return after his blood work comes back.
Would appreciate it if anyone else has experienced this?
I'm adding Christophene's comment on her other thread to save confusion!
"I didn't mean I'd appreciate it if it was happening to others; I meant I'd appreciate knowing if it happened to anyone else."
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Christophene
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All the things you mention are common - the rolling out of bed is often an early sign of PMR! Most of us have tripped over our own feet, it is difficult to say if it is an ear problem, a fairly common factor in GCA, or just our muscles don't want to do what we expect them too. Lots of people found they were also very clumsy, dropping things or knocking them over, as if there is a spatial perception problem.
Professor Toby Richards is the top In England, and runs a very the iron clinic in London. He is a vascular surgeon at UCLH, and is my consultant surgeon for my recurrent DVT’s. ( I am at risk for a right arm amputation. It’s getting better thankfully, as my body is naturally creating a network of new superficial veins to help carry the blood supply around occluded deep veins.)
Ferritin stores need to be at least 50, 70 preferably, and 100 is optimal for auto immune patients.
Fereheme IV infusions ( two weeks apart) are ideal if you are quite low. It boost up quicks and avoids the gastric upset of iron tablets.
Spatone sachets ( water naturally rich in iron) from wales ( snowdonia)can be a good start. These are best absorbed by the body when mixed with orange juice.
Ask your Hematologist about spatone liquid iron. It is gentle and easily absorbed .
***And yes... speaking from experience. My ferritin was at 12 when I started infusions. However, I was not actually anemic.
It's actually not as simple as low ferritin. In chronic illness the iron can actually be stored as ferritin and not released to make haemoglobin. In that case taking iron supplements can even be dangerous. That's why the doctor checks both, to make sure supplements are needed. High ferritin is sometimes one of the markers used to diagnose illness.
That’s why it’s important to ask the Hematologist. My apologies if I wasn’t clear enough. She said she had an appointment with her Hematologist so I though it was understood.
Always good to say it again- cannot be too careful.
Before starting any new supplement or vitamin, clear it with your GP first. When applicable for a specialist, clear it with that specialist first.
I have absolutely been through the mill with this. Getting the balance of iron and it’s sub components in balance makes a world of difference in how auto immune patients can feel.
All this will be evaluated beforehand by the Hematologist and an evaluation can be discussed based on the exact component breakdown. ( transfer proteins, etc.)
My hematologists just did the infusions- and told me I was not anemic, but the ferritin was low. It was explained that they were like bricks- and carried the needed ingredients to , “ build the wall.” It was explained that it could happen quite frequently in Inflammatory ( CTD ) auto immune diseases.
( after infusions, stores should stay boosted in therapeutic range for two years per Prof. Toby Richards UCLH.)
Yes I have been anaemic & now take ferritin tablets. I am blaming either the disease or pred, as am vegetarian & have had my ferritin checked annually for some time. It was always OK pre diagnosis. There are few changes in the iron rich part of my diet.
My fine motor skills are quite poor, also spatial abilities. Seem to spend a good bit of time cleaning up messes or picking things up off the floor. 😒. At least I can do that now. 😏 .Constantly have to remind myself to focus on the simplest action. Gross motor okay as I’ve slowed my pace considerably. Realized this doesn’t really address your problems, just sympathizing. Must be along the same spectrum somewhere ?
No it does address my problems! I have felt clumsy, always losing or dropping things, cleaning up spills, stains on clothes, etc. But since I've been on extended release iron for awhile, I do feel these things are improving. Seeing hematologist Friday to be sure nothing more serious going on; my Dad had iron-overload anemia and always falling and my grandmother had leukemia so trip to hematologist might put my mind to rest. But your comments have been helpful.
Maybe a stay at a luxury hotel for a few days with maids and servants might help too.
I haven't fallen this month. Big accomplishment. I have been increasingly irritated by technology, politics, and I shouldn't let these things bother me.
As the British poet Wordsworth said, "The World is too much with us." Imagine what he would say now.
I think I would be falling less and more dexterous if I had the sound of silence for awhile. Thanks for your response.
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