I was diagnosed with Pernicious Anemia, B12 Deficiency and vitamin D Deficiency. I started B12 Injections in October 2/3 a week until a full course of ten injections were given now I'm down to one every three months.
My doctor allowed me an injection between the now every three months dosages as I feel like my skin in crawling, tingling down my back, headache, twitches sometimes in the leg muscles and small spasms also my toes sometimes feel like someone is stuck pins in them
I have to keep moving my legs, arms and body. I curl up and have to shake my body legs, arms etc to relieve myself of this horrible indescribable really feeling.
My GP told me that my B12 levels were up to 2,000 since the treatment which started October 2023. Does anyone know why I'm feeling this way? It's horrible and I'm finding it really hard to live with
She referred me to a Gastrology clinic which I'm waiting to attend also
I hope some can help me as to why I have all of the above symptoms but didn't have them before B12 Injections.
Before injections my bloods came back with an abnormal liver reading and that's why she ran my bloods to check B12 levels and also I had one spasm a bad one in my right leg and on those two bases she tested for B12 Deficiency and got result of B12 Deficiency and vitamin D Deficiency and like I said she started Injections and now I've all of the above symptoms since starting injections and it's making life unbearable.
Thank You All so much.
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So_Drained
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Sometimes with injections you feel worse as the body heals. The health service are very laxed in treating our symptoms and seem to feel the regime of 3 monthly injections suit all - it does not. I am pleased to hear you managed to get an extra injection in between but maybe this is still not enough.
My Gp after a battle agreed to give me 2 monthly injections but still I suffered the symptoms you mention. I now self inject, the burning, muscle twitching, dizziness and brain fog was seriously blighting my life.
Are they treating your low Vit D ? Did they check your folate ?
I'm no medic but feel your injections need to be increased as it seem's you have neuropathy. I have had numerous tests with regard gastrology which will disclose the reason for our deficiency. Push for more injections or do what many of us have done out of desperation and self inject.
I'm sorry to hear your feeling so dreadful with it all but i'm sure others will advise.
P.s it looks like your computer is having an off day too !.......
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Thank you so much for your reply I truly appreciate it Jillymo Yes I am on 800IU of Vitamin D a day the last three months. My doctor was very hesitant about giving me the injection as she said my levels are up to 2,000 now but because I'm on a waitlist to see the gastroenterology specialist and until he decides otherwise it will be once every three months.
I only got that injection two weeks ago and am in bed with all these symptoms and I forgot to mention I have Hypertensive Heart Disease five years and I am on Beta blocker, blood pressure tablets, Thyroid Tablet for underactive Thyroid and a Cholesterol tablet also.
I have read that B12 Injections can cause heart problems and blood clots which I suppose makes me afraid of taking them, that and the fact I wouldn't know where to even buy B12 in Ireland outside of the doctor prescribing a prescription to my pharmacy for them although someone told me some beauticians do them.
I am truly grateful for your reply as I don't feel heard, my doctor thinks I'm a hypochondriac the way she half listens to me.
This one-size fits all of B12 injections truly cheeses me off.
Your Dr needs ruddy educating it is common sense your levels will have gone up your recieving injectons - hence why it states in the guidelines no need to retest. Avoid any more B12 tests in future.
Are you taking any other supplements other than the vit D ? Do you have copies of your blood results if so see if you can pop them on here so that others can advise.
I waited almost a year to be seen in gastro but it could be different where you are. 🤞 I havn't the guidelines at hand but watch this space someone will bat them to you. Read posts hunny your in the right place to learn about this wretched illness then you will have the correct info for when you see your gastro.
B12 deficiency often runs hand in hand with thyroid issues, I have thyroid issues too! I also have a heart issue which is different from your's. Many on here were bed bound or in wheelchairs until taking matter's into their own hands to self inject. Were you given a loading dose of 6 injectoins every other day ?
B12 does not cause blood clots and is water soluble so dont believe these myths. I have sticky clotting blood ( APS ) and I have been injecting for 3 years and feel better for it.
Your Dr needs to grow some ears and learn about the condition. Beauty parlour's charge a fortune and I personally would not got that route. Most of us buy from Germany.
I must ask her about my folate but I'm sure she did as she got a full blood test done surrounding the Pernicious Anemia and B12, at least I hope she did. She's very vague with her filling me in on results just points out what she feels is necessary to and tells me but I am going to ask her about my folate now that you've mentioned it.
Ask for a copy with lab margins she cant refuse you.
As for being a hypocondriac many have experienced the same attitude due to their ignorance.
Take a look on the Pas site its full of information and even has a page to point your Dr to in the hope of educating the silly mare......ops sorry a little anger came out there.
I concur with Jillymo suggestions. You may want to check your iron levels. Ask for a full iron panel blood test, not just ferritin. Low iron does cause your muscles to want to move a condition called restless leg syndrome. The reason I might suspect this is that you say you're low on vitamin D. This can be caused by limited exposure to the sun, a common occurrence especially during winter months. But it can also be caused by hypochlorhydria or achlorhydria. Low or no stomach acid respectively, which is a common condition in advanced stage autoimmune gastritis (Pernicious Anemia).
I tried to send this link by private message but for some reason it didn't work! These are the new Nice Guidelines due to come out next month that somebody has just posted which you might find helpful.
Maybe you could post to your surgery it might educate them.......
There is no point in testing B12 levels once you have started injections. Your doctor if they knew much about PA should have known that. It is very common for the amount to be high when injecting.
I thought that too but she done it to see how much my levels were when the first few injections started. I just hope things improve. Thank you for your reply. God bless you.
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