Do your teeth hurt

[Maggie29]

My Dr stopped my B12 about 4 months ago as level had come up she said. Now my face, lips tingle and all my teeth hurt. I get out of breath easily and I’m so forgetful. Been to dentist and she can’t find anything wrong so is it lack of B12 I’m wondering that have made my teeth ache

[clivealive Forum Support]

Hi Maggie29 If you have not supplemented any more B12 since four months ago I suggest you go back to your doctor and ask for it and your Folate level to be tested again.

Make a list of your symptoms so you don't "forget" at the appointment.

I wish you well

[Maggie29 in reply to clivealive]

I’ve had an iron infusion as having a knee replacement in 2 weeks time so now my bloods look ok the doctor said. But I think my infusion will mask the true results

[Gambit62 Administrator in reply to Maggie29]

an iron infusion won't affect B12 levels.

Unlikely your doctor is correct that the injections have restored your B12 levels - impossible to tell from a serum B12 test post injections as the injections introduce an enormous amount into your blood stream and then it is removed over time - but how quickly varies from person to person. The actual injection itself can also affect where you need serum B12 levels to be and the average for people with PA post injections is around the 1000 mark. You can only go on symptoms.

It would be helpful to know what country you are based in as guidelines for treatment vary from country to country but this is a link to the guidelines for that form the basis for treatment in the UK

onlinelibrary.wiley.com/doi...

and also an article by a haematologist on his experiences of treating B12 absorption problems

bloodjournal.org/content/bl...

[Maggie29 in reply to Gambit62]

I’m in the U.K.

[Gambit62 Administrator in reply to Maggie29]

Thanks - that's good to know - refer your GP to the two articles above and ask to be treated in accordance with the BCSH guidelines - which would mean being on maintenance doses every 2-3 months. The guidelines do not recommend treatment based on serum B12 results post loading shots.

[Maggie29 in reply to Gambit62]

Thanks for that. My Dr was advised by Liverpool Hospital where I underwent a whipples procedure to put me on B12 because of my symptoms. Apparently I don ‘t absorb enough B12 from my foods now. But Dr decided after I’d been on B12 tablets for around 6 months my levels were up and stopped them. But if I couldn’t absorb them before I don’t think I can now either. That’s why I’m on creon for malabsorption. Am I right ?

[Maggie29 in reply to Maggie29]

My Dr was advised by Liverpool hospital where I underwent a whipples procedure to put me on B12. Apparently I dont absorb enough B12 from my foods now. But dr decided my levels were up after being on them for 6 months so stopped my tablets. But if I couldn’t absorb it before then I can’t now is what I think.

[ThePATexan in reply to Maggie29]

I would hope for you that his plan of action is to find out if your body was able to absorb enough into your liver to give you temporary sustainability. Then you would only need to jab episodically instead of more often. You should ask them to clarify their intention in it for sure. That is something they should be informing you of as they make any changes or adjustments. It’s your body and it often helps you endure this journey if they occasionally let you see the roadmap!

[Gambit62 Administrator in reply to ThePATexan]

ThePATexan - an absorption problem means that your ability to access stores in the liver is at best extremely limited because the release mechanism is releasing the B12 in bile into the gut so it can be absorbed into your blood in the ileum - ie the same absorption mechanism that was broken and resulted in you becoming deficient in the first place - it's like having a leak in the pipe from your tank to your engine - not enough petrol actually gets through to be useful.

[ThePATexan in reply to Gambit62]

I definitely agree. My experience has been that most doctors other than Hematology Oncologists tend to think your body will suddenly start storing it. As if a loading dose also contains a magic fairy or something! 😂 Out of more than 20 doctors, it was finally my visit with the Hematology Oncologist when I met a doctor who “got it”. Since he did, I was open and honest with him that I was SI and how often. He looked at my numbers and said to keep doing what I was doing, the way I had been. I can feel it when it starts to wear off and he understood the condition enough to see what I was doing was working.... then I found out about the whole Pheo thing 🙄

[ChrisG123 in reply to Gambit62]

That Blood journal article was very good! Thanks for the link!

[Nackapan]

My teeth hurt at times along with vibrations in my nose especially when talking . I used to get numbness over my face. Akso tightness over whole skull. Mainly frontal now making glasses feel so tight and clamped to my head.

I think ithey mUstinov be nervestibular and related to b12 defiency as I never have had this before defiency. Other cause for me may be part of variant migrain activity? Again never had before.

I would get your bloods done again. Or ask for b12 to see if helps.

[Momac52]

My teeth hurt when very low on B12, had them checked by dentist all good 😊

[ThePATexan in reply to Momac52]

Jaw pain that presents as tooth pain is pretty common. There are also some great peer reviewed medical journal articles out there on the connections of tooth pain and erosion. Definitely keep an eye on the overall health of your teeth. Prolonged low levels of vitamin D and calcium that went along with the PA caused my teeth to weaken and I have some significant chipping away on some of my teeth. It’s an awful feeling. I’m waiting to get in to see my dentist.

[Nackapan in reply to ThePATexan]

Yes the dentist hard when your head so fragile. Will look into condition you mentioned Thasks. Also I'm keeping an eye on vitamin d D as have been really low on occassions. Now having light sensitivity won't help! Hope you get on okay

[applepea]

Hi everyone My B12 is 397 is this low?

[Nackapan in reply to applepea]

After injections? Then yes. If serum blood test I think in range. Have you symptoms though? The range of the test I had was 200-900 (pretty wide) and now I now know only shows amount of b12 in in blood. Not the 'active ' b12 so only a guide. Mine was only 106 at the first test but that was after collapsing as wasn't tested when I presented with fatigue!!

So go by your symotoms

[Dickydon in reply to Nackapan]

had load of blood done few days ago and my B12 was 312 ng/l (200-900) so got my Hydroxocobalamin injection on Monday.

My Serum Ferritin level was low too: 32 ug/L (15-300) range.

I'm assuming this is Iron related and that I'd need Iron uploading?

[Nackapan in reply to Dickydon]

Well that was what I was told

I've also read anything below 50 can cause fatigue. All we need. Mine was 61 and also 32 now. Some doctors sat within normal range . My gp said best to take iron as first sign of aneamia. She said 3 sachets spartone a day or 2 ferrous sulphate . I had already bought Solgar. So alternate days and if it's a spartone day take it with fruit juice between meals. The other can be with meals. On second blood test after supplementing still 39. So obviously needed . I'm upping supplement to see what July blood test says. My B12 injections less frequent at every 2 weeks now. Hb has been good but did drop from 14 to 13.

[ThePATexan in reply to Nackapan]

I concur. The problem with ranges is that the experts do not agree so there are no established parameters. More importantly, doctors not only need to recognize the condition itself, they need to understand it is even possible to have high serum B12 if you have a condition that keeps the cells from being able to take in the B12.

[Hidden]

I’ve had the same feeling, pain in my face like tightness and soreness in my teeth and feeling out of breath, I haven’t been to the dentist yet but I think it’s from low B12 as well. I need to get my levels tested again, maybe you should too

[robert1957]

please research the b12 s Merhylcobalamin Adenosylcobalamin good luck

[LWhelan]

I self inject and a couple of days before I do my teeth ache also - I’m now at the stage it just reminds me to inject. My dentist could never find anything wrong!!

[ThePATexan]

Has anyone checked your thyroid/PT or adrenaline levels? A great tool to help your doctors see a more complete picture is a simple pulse oximeter. You can start with a cheap-o version for <$10. With this, if you find your numbers are dropping below the 90s, invest in a Bluetooth version so you can show your doctors and track for any patterns in the drops.

[Maggie29]

Thyroid needs retesting in 3 months they said

[Ashweb901]

Raising my hand with aching teeth and irritated gums. A brand new symptom for me at age 50. It could he a menopause thing with me, but now that I've resumed injections instead of transdermal cream, they're aching less.....

[Nackapan in reply to Ashweb901]

Beware of putting too much down to the menopause. That's how I ended up in this mess!

[Ashweb901 in reply to Nackapan]

Agree!! I had a b12 level below 200 back in 1994, even tho I'm a meat eater, so I know I have issues.....the question remains as to specifically what. I've returned to self injections after a while of using transdermal cream and serum levels falling 200 pts every 3-4 months, then achy teeth cropping up in January. Headed to Cleveland Clinic to a hematologist to see if she can find out why my RBCs are still always too few, too large and too much iron on each (by necessity I suppose), and now the white cells bob just below and just above the bottom end of "normal." I had breast cancer last summer (didn't need chemo or radiation) and need to be in a better position in regards to making blood cells of all types.