I am really hoping someone will understand my PA blood results more than anything as im really down lately, sleeping pattern is everywhere, i can fall sleep on a washing line that is how tired i feel, and my bones ache, specially my "hips" I am wondering if this is down to my PA because im sure it cant be down to the other medication. I will put 2 pics up of my results and id be eternally grateful if someone could tell me about them, and im not sure if my high PA results are a cause of this, if so how do i get it down lower, i cannot absorb vitamin b12 due to my diabetes and other factors i have wrong with me.
Thank you very much in advance. Please be safe and extra careful
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jonnylongton
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The aching bones sounds like vitamin d. Do you have a reading on that? (But regardless of what I am saying it all needs to be checked out, too easy to make assumptions.)
And since you have pernicious anemia, and I assume are having regular injections, there is no reason to test your serum level - besides maybe once after loading to make sure everything is in order.
Just to give you an example, because my doctor loves to test mine without me even realizing it, I was at the > end of the highest reading last time. With no negative effects.
thank you very much for your indepth reply Litamon. But i guess in a nutshell i was just trying to find out is
973pg/ml high for my B12 reading.
And could it be that what is making me so shattered , or isnt that to high compared to some and i no need to worry , or should i be concerned and try get it down to a much lower reading.
All your info was great, ive bookmarked the link. Thank you so much . .Stay safe
Awww thank you very much Litatamon, its just me not reading your answer properly but now you've explained differently I fully understand. Thank you so very much
I’ve had aches and pains and extreme fatigue for months. I’m deficient in Vit D and Iron as well as having pernicious anaemia, my hip especially keeps playing up. It has eased a bit in the last couple of weeks, possibly due to vitamin D but I think P.A. also has similar symptoms so it could be either. It can be hard pinpointing what’s causing what. It’s very much trial and error
I have everything you have TinkRockabilly, its awful and some days you feel just like doing nothing because of the fatigue and pain. I hope you get some respite soon and wish you well.
Everyone who’s on injections will have high B12 test results, hence guidelines say not to test once injections have started. My own result (when my gp tested without asking me) was above the point at which the test could read it. I can’t remember what the figure was but it was certainly 2,000 or higher. So you shouldn’t worry about your high B12 result, it’s normal given your injections.
The only time I’ve been as exhausted as you describe is when my injections weren’t sufficiently frequent. Now that I si to supplement the monthly injection given by my GP I no longer suffer from this.
Your aching bones make me wonder about your vitamin D levels. I’ve read quite a few contributors to this forum who mention that iron and vitamin D are low so I assume these levels seem to suffer if you have absorption issues.
Thank you very much for your very informative post JanD. I never thought of it being low vit D, and don't know how to even find the results for that. But I might just find some kind of food with it in and see it if helps. I have bought vitamins before they don't help though. My body and bones are playing up today, I've already dropped off sleep 3 times, and my hips are really hurting.
It is almost impossible to raise inadequate vitamin D levels by diet. Most foods don't have much in and, though they can help maintain a level, they are unlikely to be able to lift you from deficient to replete.
One of the main symptoms of PA is overwhelming fatigue and extreme apathy - sometimes, perhaps often diagnosed as depression. Hence my fatigue and apathy has ended with IM injections every other day.
When I was diagnosed with P.A. I’d been on antidepressants for years. Soon as I knew I had P.A. everything I’ve been feeling slotted into place. I’ve always said to doctors that my depression was due to a chemical imbalance in my brain rather than emotional
Bellabab i know how it makes you feel and its awful isn't it, but I know I already suffer with anxiety and depression as I've suffered with those for years since something tragic happened. I feel the fatigue is one of the worst symptoms I have, a few years ago id be doing loads of things throughout the day as best I could, now i find it difficult to even make myself a decent meal, i will settle for a packet of biscuits for my tea as i just cant be bothered to do anything, i know it sounds like I'm lazy but I'm not, the thought of moving is tiring to me how I've been feeling lately. Thank you so much. Stay safe
I'm surprised I haven't seen anyone commenting on how unreliable that blood B12 test is. I'm in the States and I've read several times how unreliable it is. I've even listened to a doctor talk about how in med school many years ago he was taught it was unreliable. I believe the test you want to get is methyl melanic acid. They can also look at I believe the size of red blood cells and homocysteine? Just Google how unreliable that test is. The doctor I was listening to said it's only useful if it says you are low. But you could also be deficient and totally in range!
B12 shots are cheap. So I guess there's not much money in them. No patent.
My first guess is you should get more frequent shots. You were feeling better then right? You could also try oral supplements. The most popular supplements are the ones that have the cheap cyanocobalamin in them. Don't use those. From what I can gather... And what my spider sense tells me.... Hydroxycobalamin is the way to go.
The first time a doctor checked my B12 was over 10 years ago. They used the unreliable blood test. It was bottom of the normal range. Since then I have tried supplements with no success. At this point I still don't think I've ruled out B12 deficiency! If only doctors knew what they were doing.
This is going long but other areas to check out would be low dose naltrexone, hashimoto's (they usually just use Tsh for thyroid which is another very unreliable test!), And some type of GI infection like h pylori. Good luck.
Thunderdoggy, thank you so much for your very educating post. I don't know now if it is my PA or not the B12 causing me to feel like this. Ive suffered depression and anxiety for years, but never fatigue and pains in my bones like this. I do already have arthritis as well and dengenerative disc disease in my back where I've lost all my discs, also a few other problems inc live cirhossis (non alcoholic) and diabetes type 2, so got quite a lot going on, and getting older now which I seem to forget.
Thank you so much for your help I've bookmarked the page so I can keep referring to it when I feel like I do and get help off here rather than the drs. Take care and stay safe.
Given your other issues I'd really look into low dose naltrexone. I have some ordered and it's on its way. Cost about $1 a day. Check out the low dose naltrexone research trust. I think that's what it's called. Great website for information on it.
Thank you so much Thunderdoggy , i really appreciate the extra advice you have kindly provided. I will look on that site, I have never heard of "naltrexone" before, that's how far behind I am on learning info about B12 and PA. I will google what you wrote and see if I can get to the site and bookmark it. Then I will have a read of that.
Go to Facebook and join the low dose naltrexone group. Information is posted there from all research studies ever done. A few drops a day, keeps a multitude of ailments away!
You could be describing my hubby! He hasn’t had a B12 injection since the beginning of March and was late getting that one - it should have been 4 weeks earlier but nurse appointments were like hens teeth then! He’s been taking 1000mcg tablets but is constantly exhausted, down and stressed. His balance is poor and his memory is non existent! He won’t push for his injection as he doesn’t think they do any good - he feels rotten for the first few days, has 2 or 3 very good weeks and then slides downhill until the next injection- so doesn’t remember the good bit! He had a quadruple heart bypass followed by a stroke in 2018 and kept going to the doctor saying he didn’t feel right and his chest was uncomfortable. He was eventually diagnosed as b12 deficient but we were told nothing apart from being handed a prescription and told he will need injections. Neuro symptoms were never mentioned and at the time we knew nothing about them. This forum has been a godsend. He is also struggling to get his blood glucose under control as he has T2 diabetes as well. He doesn’t comprehend what is good for him and what he shouldn’t eat! Exercise is out of the window as he’s no energy and because of his balance issues. He takes folic acid and vitamin d3 tablets as well as his b12.
I am exhausted trying to do everything and decipher what he means and who/what/where he is talking about!
Im so sorry to hear what you have going on with your hubby Jane. It must be terribly tiring and stressful for you. My partner still hasn't come to terms what I have, so when I go tired and lethargic she moans and keeps on "your always tired I may as well go back me mums" (as we don't live together, but she kind of punishes me for being tired and I try and try to get her to understand its not me its my B12 and PA. I have told her to read this site and see how there are plenty of others like myself, but she has never read it once, all I get is I'm too busy, but she can go on facebook of sit googling things, its so frustrating as I want her to understand , she has a couple of illness's and I understand why she does somethings she does, and instead of blaming her I would say something like "is your hot sweats playing up" and I will open a window or door till she eventually cools. No not me, its "I feel its a waste of time coming over as when I do all you do is moan how tired you feel or fall asleep" yet she says she loves me to bits ??? I will never understand how her mind works.
I do same as your hubby in where I start a sentence and end up finishing with a different sentence to what I was originally on about, or I will constantly forget things, even my words, I get to the end of the sentence and forget what word I'm supposed to end it with, just for an eg id say something like "I've took the dogs out , I managed to go to Tesco"? when I really mean I managed to go to the block and back, and then say oh I went tesco today and she will not try and understand I get "bloody hell it gets harder to understand you never mind easier".
Its tiring me out writing this, my body is aching like anything as I've tried a little painting and I know I will pay for it later, I feel like a failure most of the time as I remember back where I could decorate a house in just over a day, now I paint 2 doors and I've had it , just had to have more morhine to cope with the pain im in, and goodness know how long im going to be able to stay awake.
Sorry if I've bored you Jane, this isn't a rant, its getting how I feel off my chest and partially saying I wish I had an understanding partner like you are with your hubby.
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I'm very confused. Please Help with tests results - I would be so grateful - thank you!
I'm so confused can someone explain???
PA and the Dentist
I'm just feeling lost and want to share
