Does anybody else have these symptoms? Now my symptoms have gotten worse, it's in my stomach and so painful, it feels like there is something in there. It makes me unable to be active and I have horrible back pains because of bad posture. I am now 115 lbs from 167 and after being diagnosed with low B12, iron, folate and malabsorption and malnutrition (was surprising because I was very active at work and at this time I had only lost 20 lbs) . I feel sharp pains occasionally lately near my left pelvis, and I can't barely bend over. Because of my weight loss, my job fired me because they thought I was on drugs, which was not true and I have all my doc tests for urine to prove it. There was no drug test and I found out that my coworkers lied about me because I wasnt able to keep up anymore (I was the training store manager). This added to my depression and anxiety, and when I was about to get my first shot ( I have been taking all supplements and b12 sublingual) my gp decided to check my stomach and had me lie down which was something I haven't bee n able to do without pillows propping me up After touching my stomach she called 911 and an ambulance took me to the hospital. I told them what I think iis causing it and what tests to run but they didnt and released me with a referral to a GI which I will be seeing next week. Only my first doctor at a walk in clinic and my cardiologist suspected it. All other docs said its depression, anxiety and stress again, I also have noticed in the past two weeks that it's getting hard to see with my cocntacts in and I just had an eye exam three months ago. My mood swings have gotten so bad I feel like sometimes I want to die. To date, my symptoms are tired/fatigue, pain and tingling in hands and feet, I am always dizzy when I wake up and have to sit up for a few minutes. I am afraid of what is wrong with me at the moment, I eat alot but I don't gain any weight. I am afraid I won't be diagnosed properly before it gets worse. I have not been officially diagnosed with pernicious anemia yet because nobody takes me seriously. Please any advice, my worst fear is stomach cancer or gastric atropby as my stomach symptoms match both. I am TERRIFIED!!! I have to apply for our government health care because my job loss cost me my insurance. BTW they were so wrong, they knew I was sick for over 5 months, but I am suing them for wrongful termination and defamation of character and a whole lot more from what I found out. Thanks for listening, I hope someone out there has some advice for me
MORE SEVERE SYMPTOMS: Does anybody else... - Pernicious Anaemi...
MORE SEVERE SYMPTOMS
Hi,
PA is an autoimmune problem.
It’s not uncommon to have more than one autoimmune problem at the same time.
I was diagnosed with hypothyroid at first but after taking levothyroxine didn’t feel any better.
My worst symptoms were digestive. Acid reflux etc and I tried to eliminate which foods might be causing it. I even thought I had a wheat/gluten intolerance.
Eventually one of our GPs tested me for B12 deficiency. After taking hydroxocobalamin shots I found I was OK but it takes time to improve. It’s not instant as the body has to readjust itself.
And hypothyroid takes months to reverse.
I’m not able to have shots at the moment as I’m on warfarin. So I’m taking B12 sublingual under the tongue.
Many autoimmune symptoms overlap so that causes some problem in diagnosis
Hi Canadian...Just mystified as to why your GP has stoped your B12 injections because you're on warfarin 🤔.
Just for a sanity check (mine), I've checked on drugs.com and there are no known interactions between warfarin and vitamin B12 (which was my understanding). Here's the link:
drugs.com/drug-interactions...
Warfarin does interact with a lot of other drugs - and with quite a few vitamin supplements too - vitamin K being a major problem.
So...wonder if your GP has applied a 'general' warfarin not good with vitamins rule without realising that there are no problems with vitamin B12 and warfarin?
Or perhaps mixed up the the vitamin concerned and assumed it's vitamin B12, rather that vitamin K.
Might be worth checking...👍
P.s. sorry for interrupting your thread jennyfromthabayfr ...
Because warfarin affects blood clotting there are worries about giving IM injections, in case a small vein is hit and the bleeding cannot be stopped.
But that’s not a good reason to stop the life-saving injections.
Yes...agree about the small risk of bleeding.
Also agree about that not being a good enough reason to stop life-saving B12 injections. Appears that the 'one-size-fits-all' guideline is at work again, without any thought or risk assessment attached.
Here's what NHS choices say about IM vaccinations when taking warfarin:
Having vaccinations
You can have vaccinations while taking warfarin.
If the vaccine is normally given by injection into the muscle, then providing you're up to date with your INR testing (see above), and that the results are within the correct range, you can have the injection as normal into muscle. This is known as an intramuscular (IM) injection.
Alternatively, the injection can be given into the layer of fat underneath your skin. This is known as a subcutaneous injection. Firm pressure applied to the site for 10 minutes after the vaccination may reduce potential bruising.
And if it applies to IM vaccinations...
No current research evidence about whether SC injection of B12 is as effacious as an IM injection (though many do this and don't report detrimental effects). But that's not the same as evidence, so...
Interestingly, the PAS are just pulling together a research project to investigate the efficacy of SC injections of B12. If the results are positive...well what a good result that will be. Another step towards 'allowing' we deficients to self-inject SC B12...in the same way as diabetics.
Now if the PAS can work a minor miracle and get injection frequency guidelines changed too...
Hi,
It’s nothing to do with drug interaction.
It’s to do with bleeding. It’s not possible to have intramuscular injections.
So I’ve had to find another way.
If it works with sublingual methylcobalamin I’ll not need injections ever again.
Hi Canadian. Yes, I understand about the potential bleeding risk, but...
Don't think this is a good enough reason to stop life-saving B12 injections. Appears that the 'one-size-fits-all' guideline is at work again, without any thought or risk assessment attached.
Here's what NHS choices say about IM vaccinations when taking warfarin:
Having vaccinations
You can have vaccinations while taking warfarin.
If the vaccine is normally given by injection into the muscle, then providing you're up to date with your INR testing (see above), and that the results are within the correct range, you can have the injection as normal into muscle. This is known as an intramuscular (IM) injection.
Alternatively, the injection can be given into the layer of fat underneath your skin. This is known as a subcutaneous injection. Firm pressure applied to the site for 10 minutes after the vaccination may reduce potential bruising.
And if it applies to IM vaccinations...
So...if the sublinguals don't work and your symptoms begin to return, might be worth pointing this out to your GP. IM should be...is....possible providing your INR is within the correct range (as per NHS Choices, above), and this will be checked regularly and entered on your warfarin treatment record card, so will be readily available whenever a B12 injection is required.
I've also read some research papers which found no detrimental effect from IM injections when on Warfarin (though there are conflicting opinions in other papers).
No current research evidence about whether SC injection of B12 is as effacious as an IM injection (though many do this and don't report detrimental effects). But that's not the same as evidence, so...
Interestingly, the PAS are just pulling together a research project to investigate the efficacy of SC injections of B12. If the results are positive...well what a good result that will be. Another step towards 'allowing' we deficients to self-inject SC B12...in the same way as diabetics.
Now if the PAS can work a minor miracle and get injection frequency guidelines changed too...
Good luck with it all 👍
Well they did check my thyroid twice, I live in Tennessee ad here PA is not somethiing they check for, even if you request tests. When I had went to a hospital, I told the doctor what test for and she said she thinks its stress. Turns out this doctor is a hematologist. Wow. But yes, the digestive problems are horrible and losing weight like I did was scary, I am used to being anywhere from 145 to 167 which is the most weight I had before I started losing. I am now 118 that's 3 lbs more. But my symptoms are alot of mental symptoms with random symptoms that these doctors say is in my head. Only my cardiologist and the doc who originally diagnosed me knew what It could be. The GI will be able to see more than these other ones. I have been taking the sublingual b12 for 6 months now, 2500 mg but not doing much. I will be starting on shots soon though. Thanks for responding, I have heard it might take a while for symptoms to get better.
Hi jennyfromthabayfr.
I wish I had a B12 injection for every time we hear that 'it's all in the head'...
Just in case you need it in the future, here's some information about neuropsychiatric symptoms and B12 deficient, for the doubters...
stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)
Also - if you read the second and third PAS pinned posts (to the right of this page when you log on or at the bottom if using a phone), there's lots of information about B12 deficiency, PA, diagnosis, treatment, common misconceptions that doctors have etc.
In your head? Duh...
Good luck with the B12 shots...and be aware, your B12 levels will shoot up to -hopefully - very high levels. This is not a reason for your doctors to stop your injections, as many mistakenly do (info about that in the PAS pinned posts but come back with a new post if you have any problems).
👍
If you have only just started your B12 shots you may find that you feel worse before you start to feel better I know I did and I think other people on here have said the same in the past. I had really bad unexplained back pain at one point and spent a while on strong pain killers. You may find the list of symptoms on the PAS site helpful and there is a lot of info on there that may help. I also had a problem with vision disturbances unexplained by the optometrist but over a period of time I worked out that my eyes were very dry (also my mouth and nose) and found that a dry eye spray made quite an improvement to my eyes.
Make sure you continue to eat a good diet , keep a diary of your symptoms and take it in with you when you see your GP along with any B12 info that you have and keep telling him/her whats going on.
Hope you get some answers and treatment soon, and that you start to feel better
thank you, yes I do keep a log of my symptoms because there are so many! I just want to feel normal again and gain weight back
Have you had a B12 shot yet?
I used frequent high-dose sublingual B12 for over a decade (methyl, hydroxo, and adenosyl), but when I finally had an injection the difference was like night and day. The lights came on; I only wish I had discovered shots years ago. I always try new ideas to alleviate my fatigue and tingling, and one day I decided to see if a B12 shot would be better than my bottles of sublinguals. Found a clinic that charges $35 for a pure methylB12 shot that they call an "Energy Boost", no prescription needed. And OMG, so much better. So very much better. Well... better, after the first few hours of headache and weird sensory side-effects.
My serum B12 level was high from the sublinguals, and I didn't have any anemia, but I had significant neuro symptoms. So perhaps the sublinguals can fix the blood but not the neuro issues. If you are having anxiety, fatigue, and tingling, see if a shot has any effect on your symptoms.
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