Ooh, sounds like pernicious anaemia - and they've never told you that that's what you have (if you do)? Well that won't do, go and demand a diagnosis - proper name and all! Seriously, joking aside, I should think it's important to know if that's what you have - even if it's just for all those cursed medical history forms! Do you just take B12 in tablet or sublingual form, or are you going for injections?
Jillian said:
Woman - yes I had a great dr in WA state who had read a medical journal just prior to my monthly visit for pain management. As he was leaving my appt he popped his head back in and said, “I just read an article about an inability to absorb B12. Symptoms match yours. Let’s do a blood test”. Turned out he was right. I was never given a name for it. My symptoms were numbness in fingers and toes. Fatigue. Puns and needles feeling all over.
I take 10,000 B12 daily. Seems to help as I notice symptoms returning when I run out of B12.
Even if it is pernicious anemia, B12 supplementation is all that is done to treat it. I can not absorb B12, or Iron due to a auto immune caused chronic inflammation of my stomach. B12 shots once a month, and iron infusions, 6 over 6 weeks once a year.
Woman with the electric teeth said:
Ooh, sounds like pernicious anaemia - and they've never told you that that's what you have (if you do)? Well that won't do, go and demand a diagnosis - proper name and all! Seriously, joking aside, I should think it's important to know if that's what you have - even if it's just for all those cursed medical history forms! Do you just take B12 in tablet or sublingual form, or are you going for injections? Jillian said:
Woman - yes I had a great dr in WA state who had read a medical journal just prior to my monthly visit for pain management. As he was leaving my appt he popped his head back in and said, "I just read an article about an inability to absorb B12. Symptoms match yours. Let's do a blood test". Turned out he was right. I was never given a name for it. My symptoms were numbness in fingers and toes. Fatigue. Puns and needles feeling all over. I take 10,000 B12 daily. Seems to help as I notice symptoms returning when I run out of B12.
I think iron deficiency is a blood test, like most things, and yes, taking oral B12 would affect a blood test for B12 deficiency. I don't think it would affect anything else though. The injections are superior, yes. They give them to people with pernicious anaemia - just one of the reasons why you should have a formal diagnosis, in my opinion. One other is that if you don't know what you have, how the hell can you be proactive in your own treatment? I'm afraid I don't trust doctors enough to be ignorant of my own diagnosis - I'm a control freak!
Hi Ellis, nice to hear from you. Not been having the best time, after a run-in with my neurologist, made worse by the NHS dealing badly with my complaint about her, then, ironically two lots of blood tests (they allegedly lost the first lot) and STILL no results back for my B12 - so no, I have no result yet so still no idea whether it has played a part in my downfall and whether it is something I could treat and maybe help my TN.
I have taken up meat-eating again. I figure I can at least be feeding myself more B12 in the interim! I was at the doctors today and he has promised faithfully that he will chase up the lab and get me an idea of when I will see a result. He did reassure me they could take a long time, weeks rather than days, so maybe all might still be well. I am living on one very badly frayed nerve and broke down in tears in the surgery. I always hate that (I'm saying that, but I've only done it twice) and feel so humiliated. I'm trying to give myself some positive psyching up and telling myself I'm entitled - especially when they lose your bloody results! But it's hard. Doesn't come naturally to 'allow' myself public emotions!
How about you? Are you well? I hope you weren't out of the flow because you were too sick?
I know this is an older discussion but it is very interesting to me. I have had vitamin b deficiency as well as Hashimotos thyroid disease for five years (diagnosed) likely more for ten years. The TN came on about a year and a half ago and was after my thyroid was somewhat under control.
Hi Jenn, very interesting that you have B12 deficiency and Hashimotos. I have been frequenting the B12 deficiency forum at the (UK) pernicious anaemia society site and it is incredibly common for those two things to go together. Has any doctor ever made a connection between your deficiencies and TN? I don't know if you know the book 'Could it be B12?', but it lists TN as a possible symptom of B12 deficiency. I took a huge dossier of stuff on it to my doctor and pleaded for B12 injections after my blood tests were found to be borderline for B12 deficiency, and I was very lucky that he agreed to it, but not without a few fights! I am now getting B12 therapy. During my loading shot period it helped my TN pain tremendously, but around the 3 and a half week mark (after the loading shots were finished) it got really sore again, so I've managed to talk him into giving me monthly injections. Again, I'm lucky. Most NHS doctors just won't give them that frequently. Are you taking B12 currently?
I am doing monthly B12 injections (was doing every three weeks). I have yet to notice any difference yet and it has been years. Recently started treatment for low iron as well. I eat well and don’t really drink so can’t figure out why I am so deficient. I’m not under or overweight either. Actually just where I shouls be. Very frustrating. The supplement pile just keeps getting bigger.
Do you have Carpel Tunnel as well? Got that too. Came along with my thyroid issues and never left. I never did a loading shot with the B12- maybe I need more? I’m going to talk to my dr. She is pretty reasonable when it comes to requests.
Have you been treating B12 deficiency for years but are still deficient? Is this deficient as shown by your blood tests? If so, what is the doctor doing about it? I take it you've been tested for Pernicious Anaemia? And IF antibodies? Were those tests negative? If you have been deficient for years then you must surely have anaemia by now? And you must be exhibiting neurological signs?
No, I don't have carpal tunnel, thank God. I had gallstones, lost my gallbladder and had oesophagitis at the same time but didn't realise it till recently. Then I got TN. That's the sum total of my ill-health, but it was all very close together, and very tiring and depressing. I'm desperately trying to put the whole picture together, because I feel it IS a whole picture. Doctors are not interested in a holistic picture of your health, it's strictly a treat symptom thing for them. I hate it. I need to know the causes. I don't think you stand a snowball's chance in hell of fixing anything unless you know why it really happened. A nerve being squashed by a blood vessel doesn't cut it for me!
funny you should metion hasmitos. i have underactive gland and also my 'ferritin' levels were slightly low 15L if that means anything,cos it doesnt to me.My zinc levels were alos low 10.4L ,again means nowt to me. soooooooo off to doc tues to speak about low thyroid too ,and the above. The neurologist i had appt with on Mon was not in,he went off sick,so have to wait now till Feb.
Woman with the electric teeth said:
Have you been treating B12 deficiency for years but are still deficient? Is this deficient as shown by your blood tests? If so, what is the doctor doing about it? I take it you've been tested for Pernicious Anaemia? And IF antibodies? Were those tests negative? If you have been deficient for years then you must surely have anaemia by now? And you must be exhibiting neurological signs?
No, I don't have carpal tunnel, thank God. I had gallstones, lost my gallbladder and had oesophagitis at the same time but didn't realise it till recently. Then I got TN. That's the sum total of my ill-health, but it was all very close together, and very tiring and depressing. I'm desperately trying to put the whole picture together, because I feel it IS a whole picture. Doctors are not interested in a holistic picture of your health, it's strictly a treat symptom thing for them. I hate it. I need to know the causes. I don't think you stand a snowball's chance in hell of fixing anything unless you know why it really happened. A nerve being squashed by a blood vessel doesn't cut it for me!
Hi Barbara, you have Hashimotos too? That's weird. Maybe I should be asking how many TN sufferers have thyroid problems - and putting an appointment on at the doctor's for a thyroid deficiency test! You should look your low level results up on Google. Just type in 'what does low zinc mean in a blood test?' for example, and you will get all the info you need. I did that with all of mine. Really useful. Doctors are hopeless on this. If you ask them they just say ' Oh, it's within normal parameters' or 'you don't have to worry about that' or 'I'll give you this med and it will all be fine' They don't actually tell you what it means.
barbara said:
funny you should metion hasmitos. i have underactive gland and also my ‘ferritin’ levels were slightly low 15L if that means anything,cos it doesnt to me.My zinc levels were alos low 10.4L ,again means nowt to me. soooooooo off to doc tues to speak about low thyroid too ,and the above. The neurologist i had appt with on Mon was not in,he went off sick,so have to wait now till Feb.
Woman with the electric teeth said:
Have you been treating B12 deficiency for years but are still deficient? Is this deficient as shown by your blood tests? If so, what is the doctor doing about it? I take it you’ve been tested for Pernicious Anaemia? And IF antibodies? Were those tests negative? If you have been deficient for years then you must surely have anaemia by now? And you must be exhibiting neurological signs?
No, I don’t have carpal tunnel, thank God. I had gallstones, lost my gallbladder and had oesophagitis at the same time but didn’t realise it till recently. Then I got TN. That’s the sum total of my ill-health, but it was all very close together, and very tiring and depressing. I’m desperately trying to put the whole picture together, because I feel it IS a whole picture. Doctors are not interested in a holistic picture of your health, it’s strictly a treat symptom thing for them. I hate it. I need to know the causes. I don’t think you stand a snowball’s chance in hell of fixing anything unless you know why it really happened. A nerve being squashed by a blood vessel doesn’t cut it for me!
Very interesting conversation regarding B12. I have been B12 deficient for many years now. I had surgery a few years ago that may caused me to have malabsorption of B12. I have been taking B12 injections and taking supplements for B12. However, I can never get enough. I wonder if I hit such a low B12 volume that that caused the TN to erupt. Everything I try for the B12 doesn’t get the levels up. I wonder…
I take B12 sublingual 5000mcg “No Shot” for 2 years.
I have ATN for 3 years. I don’t know if I was B-12 low before I got this illness.
Test in 2015 was greater than 900.
Test in 2016. Was greater than 1500.
180-194 normal
145-175 indeterminate
<145. Deficient
Dr. Said the high number are not dangerous, but to cut back to 3 times a week.
The Brand is Superious Source sold online from Vitamin Shop.
Please note I wasn’t much a meat eater, but I taken good vitamins especially the B’s last 30 years.
I don’t know if this has helped me, but my 2nd time with ATN is not as bad as the first time when I was not taking B -12.
I think it is very important to Vitamin D check.
If you take this supplement, be sure to take it with some fat to be absorb,
Absolutely, Hummingbird. How often do you get your B12 injections? If you are not holding it, as it were, then there is something seriously wrong. Has a doctor never picked up on this? B12 deficiency will cause neuropathy. If it goes on untreated it can be so severe it can cause full-blown paralysis and insanity (schizophrenia, I believe - don’t quote me!) In other words it’s VERY serious. It’s a greatly overlooked problem, a bit like coeliac disease. Have you ever been tested for pernicious anaemia?
You’re absolutely right, Linda, although there is some argument about how useful oral B12 is. A lot of people believe that B12 issues may be cellular and therefore B12 that is ingested cannot be used by some people who have deficiencies. Also the figures they give for deficiency are unnaturally low. In Japan they consider anything under 400 to be deficient, and America put the figures up because they realised people were displaying symptoms at much higher figures. Mines was 300+ when I was tested and therefore not a deficiency according to the NHS, so I had to fight very hard to get treated. Fortunately I did manage to convince my doctor, and lo and behold my TN went into remission almost straight away a soon as I got shots. Not a coincidence, although my doctor still firmly believes it is a placebo, because he’s an idiot!
If you can not get the B-12 shot, you can get the one to put under your tongue - Superior Source B-12 sublingual 5000mcg.
As you can see from my blood work, it is definitely being absorbed In my body. It should work for most people.
It Cost around $26.00 for 60 day supply.
I order it from Vitamins Shoppe online.
Yes, sublingual is definitely the next best thing, but as I say, for some people with B12 problems they have to have shots; for some reason/s not yet understood some people can’t make use of oral B12 - hence them developing deficiencies in the first place (for example coeliacs and people who have had gastrointestinal surgery can’t absorb it properly because of stomach problems). It’s definitely a good idea for TN sufferers to supplement but some TN sufferers may have TN (and/or other neurological issues)because they have a problem utilising B12 and tablets won’t help them; it would have to be shots. I’m pointing this out because people shouldn’t assume that because they take B12 supplements their B12 levels aren’t an issue.
Interesting. I am going to be seeing my PCP in a few weeks time and she will probably order a CBC. The sublingual B-12 maybe my best bet - thank you. Also my red blood cells are light. I am going to have her check for pernicious anemia. It is amazing that some doctors look for the easy route and don’t go beyond what they see.
