Can waist pains, hip pains, back pains and pains on tip of tongue still be symptoms of b12 deficiency?

[Agala]

Hi everyone ,

I have been treating b12 deficiency for 4 months now. Instead of improvement, I now have among other symptoms pains in my waist, hip, thoracic regions, back and tip of my tongue

[Nackapan]

I got worse before better.Stick with your treatment.

Take supporting supplements if needed .

Make sure fokate iron vit D all at a good level.

Healing happens but not in a linear line

[wedgewood]

You don’t say how you have been treating your B12 deficiency , with tablets or injections . If you have Pernicious Anaemia, you need B12 injections . P.A. is the most common reason for B12 deficiency . Has your doctor not investigated what is causing your deficiency ? You need to know the cause .

[wedgewood]

How to diagnose Pernicious Anaemia by elimination when you have B12 deficiency symptoms .

1)if you are not vegan or strict vegetarian.

2)If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )

3)If you do not abuse Nitrous Oxide ( laughing gas)

4)If you do not have fish tapeworm

5)If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———

6)Low serum B12

7) Symptoms of B12 deficiency (Google to find out - and there are many symptoms.

8)Gastric atrophy restricted to the corpus and fundus

9)Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection

10)Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized

11)Hypergastrinaemia (various causes including Helicobacter Pylori infection .)

12) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.

High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it .

High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )

Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis.I was lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom .

Reading posts on the forum has been very informative. Best wishes .

[MrsTuft in reply to wedgewood]

Can you get a positive test for PA once you’re already injecting? .

[MrsTuft]

I have similar. Four months in and the numbness in my arms and legs and back pain are much worse. I’m just going to keep going with SI but it’s worrying.

[jade_s in reply to MrsTuft]

Meant for both you & Agala: It's not abnormal for things to get worse at first. But a few things to think about:

How are folate levels currently and/or are you supplementing any. B12 needs enough folic acid to do its work.

I also always mention heat/light damage as a possibility of worsening symptoms especially a risk during all these heat waves.

And of course neuro symptoms require every other day (EOD) injections until no further improvement. Some of need more frequent than EOD.

[jade_s in reply to jade_s]

Just read through your last post. Are you still using Pascoe EOD? I know it works great for many here but for some reason it did nothing for me at all and I've heard a few other people here remark the same. Maybe we had bad batches, I don't know. I went seriously downhill after switching to it and it took me a month to realize, i was worse than when i had first started injecting. You might try a different brand just to be sure, eg Panpharma or Hevert. Please don't order when it's crazy hot temps out.

Or you might just need to take some folic acid, if you haven't been taking any at all, or more, if you have been.

[MrsTuft in reply to jade_s]

This is so helpful. I wasn’t taking folate at first as my levels were very high but I’m waiting on a blood test to see if I need to now. Yes I’m using Pascoe. And I’ve put it in the fridge but don’t know if that’s wrong. Should I alternate with another? And which one??

[jade_s in reply to MrsTuft]

Fridge should be ok as long as it's not at or near freezing. You can try Panpharma or Hevert, they both have a 1mg dose. But Hevert's volume is 2mL so some prefer Panpharma.

[EllaNore in reply to jade_s]

I have Sandoz Cyanocobalamin does anyone know how that one is? Thanks

[jade_s in reply to EllaNore]

I'm sure that's fine. I mean the Pascoe should be fine too but it's the only one where I've read others had issues.

[EllaNore]

I have similar symptoms. The more I bend the more my abdomen hurts and bloats from hip to hip and becomes very difficult to walk stand up straight or swing my legs forward to walk. I spent the whole day in bed yesterday. My feet hurt terribly my back hurts terribly, my neck, headache etc. I have blister sores in my mouth that for years nobody knew what they were but they seem to be clearing up now that I'm taking B12 injections daily. I've only been doing this about 3 months, my symptoms got really bad once I started my treatment, but I think they're starting to subside a little bit. I think our bodies slowly got used to being depleted and when you give it something good that it's supposed to have it kind of freaks out because it's been in disease for so long. So things do get a little worse before they get better. I went 37 years undiagnosed so I'm not sure how much of this is irreversible. I'm still waiting to see. For me, because my insurance only allowed one injection a month, I bought my own and started on once a week and that didn't seem to be enough so I went to every other day and either I was impatient or that still wasn't enough, so I went to Everyday injections. Once my symptoms calm down I might be able to go to Every Other Day.

And one other thing I read that I saw in a couple of other articles is that your tongue can be red and very smooth and enlarged. I do have an enlarged tongue, I don't know if it's smooth compared to others but I have been told that my tongue is larger than normal by a dentist. So the sore on tongue could be something, best of luck. This forum is your life line. The people here are so supportive and Knowledgeable. Hang in there.

[Hidden in reply to EllaNore]

Have you had you iron levels checked ? This can also cause smooth tongue. Iron, folic and B12 all important.

Sorry you were poorly yesterday ! Perhaps the rest is what you needed.

[EllaNore in reply to Hidden]

Thanks SallyannI. I have been resting all week, really 80% of the past 3 months have been laying down. I wish i would perk up soon. I have to look at my blood work results again. I thought my iron was ok. I bought iron, but didn't feel too good when I took it. I take folic every morning with my injection and prescription D3 once a week. Also tried magnesium day before yesterday, but got pretty nauseous and crampy. Generally felt yucky. Always nauseous, have an endoscopy in two days. 🤞🤞🤞

Thank you. Hope you are well.

[Hidden in reply to EllaNore]

Let's hope you find the magic potion soon.An invisible illness that nobody can see but so debilitating.

[EllaNore in reply to Hidden]

Thank you. Yes in deed. Have a good day.

[MrsTuft in reply to EllaNore]

Some magnesium supplements like citrate can upset the tummy - if you haven’t already try a glycinate.

[EllaNore in reply to MrsTuft]

Ok, thank you MrsTuft. I will keep that in mind. I think I had better wait until I get used to the B12. I don't know what's working or not. This is so overwhelming. I am pouring over blood tests from 2012 to 2022 and boy am I getting an eye opening surprise. My brain is so overwhelmed.