Pernicious Anaemia Society
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Good news on numbers!

Hi Everyone! I just had to post to let you know all my numbers are continuing to improve. My biggest issue was hemoglobin and it's now up to a 14. My cells have come back normal in shape and size. My oncologist is thrilled with where I'm at and I did have final iron infusion today as a booster and he gave me ideas on my iron and what form to take. He said the ferrous sulfate is the most prescribed here but willing to have me try others and gave me a list of where we would start. He's keeping me on an very 2 week schedule of B-12 injections to keep my numbers high. He said my numbers are now better than a healthy 20 something year old! He also assured me there is life after a diagnosis of P.A. And that when they almost lost me because I had gone so long without functioning oxygen levels they were not very optimistic about the damage I had sustained. I am responding very well to treatment with very manageable and tolerable side affect symptoms. There should be more doctors like him in the world! He also told me he isn't going anywhere and his wife is a physician also and they love the community. Whew!! I was just so relieved after this visit that I had to share. This PA really has had me a nervous wreck. Now deep breaths and continue on. Thank you everyone who has provided encouragement and information and support when I needed it most.

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Your joy and happiness is so evident in your words, best of wishes that you continue to improve and become completely well again.

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YAY! That's fantastic news CH52 :) I am so happy you "passed" your blood test and won't need more iron infusions.

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Hi CH52 That's a bit of good news to go to bed on.

I can certainly echo your doctor's words when "He also assured me there is life after a diagnosis of P.A." as I've had it for more than 45 years and I wouldn't be here today without my little shots of "RedeX".

Goodnight

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Hi.

I wonder if anyone would care to comment on something I picked up on in CH52 post. He/she says that they had gone so long with without functioning oxygen levels, and a low haemoglobin count?

I have developed what appears to be peripheral cyanosis in my hand/fingers/feet, which is a sign of low oxygen levels? My doc had told me that my haemoglobin count is "abnormal", but he did not say if high or low!

Has anyone else suffered with peripheral cyanosis, and the associated bluish tinge to the hands/fingers/feet (oh, and the nurse who took the blood for the tests commented that my blood had a bluish tinge to it!).

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Hi Patez! My hemoglobin was down to 4.5 when I was sent to hospital emergency room by my internist and when the on site lab saw how low it was they brought in my hemotologist/oncologist to relook numbers and between both doctors were waiting for me to get to hospital to start transfusions. It happened within hours! I had a total of 7 units of blood given. They explained that the red blood cells carry oxygen to all parts of your body so I was constantly out of breath and my heart was racing and that was due to oxygen not getting to rest of body so heart and lungs work harder to remedy. It caused major memory loss and blackouts. My hands and especially feet were icy cold. They were going totally numb on me. Like walking with unfeeling wooden legs and feet. When they pulled my eyelids down they were white not pinkish red. My skin was as white as the wall. My legs and arms could not hold me up very long and I had tremors in them. I honestly thought I was having either a lung issue or a heart issue or even a stroke. Never in my wildest dreams thought blood issue. I hope you can get you numbers from your physician and have a discussion as to what all this means for you, a diagnosis and treatment. I wouldn't wish this on anyone!!!! Best wishes in your quest for answers.

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Hi Patez...just a quick comment...you'll probably get a better response if you put your query in a new post (with an appropriate title of its own) rather than as a reply embedded in an older post on a different topic (which won't be seen by all in the forum - just those who read CH52's post - which is a little down the page now so may not be viewed so regularly).

Hope your doctor is doing something about your 'abnormal' HB count and peripheral cyanosis...they should be (investigate cause / treatment?)

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Thanks.

Will do.

I do fight a losing battle with the docs out here in Oman, so I doubt if I will get very far!

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Hi CH52. I agree with Lisahelen...you joy and happiness leap out of the page. So delighted to hear that you're doing so well now.

And your post will have given many folks here a really good perk 😀😀

And it's fantastic that you have such wonderfully knowledgable and supportive doctors to care for you.

Very best wishes for a continued and speedy return to full health.

Let us know how it goes...or just pop in for a chat when you feel like it.

Take care xx

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Thank you so much!

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