Intrinsic Factor Negative: I’ve been... - Pernicious Anaemi...

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Intrinsic Factor Negative

RosieTheRoo2023 profile image

I’ve been feeling grotty for a couple of years and have thyroid antibodies. Started on levothyroxine and liothyronine, happy with levels just taken.

Symptoms that continue to bother me:

Headaches & headpains

Sore mouth, tongue swollen

Poor balance

Back pain

Urinary incontinence

Loss of sensation when passing urine

Constipation (better but still need laxatives)

New knee pain

I thought these could be indicative of B12 deficiency, however my B12 level is good and intrinsic factor antibodies negative.

I’ve started subcutaneous B12 injections, had 3 so far but no noticeable improvement.

Family history of high stomach acid and indigestion. On lansoprazole for this but still need antacids on top too occasionally.

Don’t really know what to do next. I think seeing a GP about new knee pain is probably a good idea.

I might as well continue to injections as I already have them - how long does it take to feel better if is related to my body not actually utilising the B12?

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RosieTheRoo2023 profile image
RosieTheRoo2023
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14 Replies
Nackapan profile image
Nackapan

Were your folate and vitamin D at good levels ?

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to Nackapan

Not too bad at all. Scratching my head why I feel rough & knackered

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Nackapan profile image
Nackapan in reply to RosieTheRoo2023

Yes they do look good

Nackapan profile image
Nackapan in reply to RosieTheRoo2023

Perhaps you need investigation for functional b12 def.via an Mma test ?? Get all the tests you can

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to Nackapan

I thought about that.

if it was func B12 problem, B12 injections should be the solution? How many injections would it take to see a difference? I’ve only had 3 so far and don’t feel any different.

The only other deranged blood result is high MCV - this has been raised in the last two years.

I had 3 Covid jabs and then 3 bouts of Covid (that I know of) in an year and am still regularly exposed (I’m a nurse). Can’t help wondering if this kicked off my autoimmune thyroid antibodies.

I’m just tired of being tired now although I’m not as fatigued since being on meds for thyroid.

mountmuir27 profile image
mountmuir27 in reply to RosieTheRoo2023

How are your blood sugar levels or A1C? Even small increases will make you tired.

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to mountmuir27

HBA1C is 32 so pretty okay. I’m going to overhaul my diet though and cut back on refined foods, hopefully that will help 🤞

mountmuir27 profile image
mountmuir27 in reply to RosieTheRoo2023

Menopause?

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to mountmuir27

Been on HRT for 10 years now and haven’t felt any sweats etc and hormone levels are where they should be.

Hockey_player profile image
Hockey_player

I have knee pain that came after an injury. My doctor did an x-ray and I have some osteoarthritis. Where I am, I need the doctor to get the x-ray. But physiotherapists are better resources for manual therapy, taping if you need that, and for getting exercises to help my knees. I have PA, but I don't think the knee pain is because of it. More likely old age and lots of activity when I was younger (and still lots now).

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to Hockey_player

I’ve managed to get an appointment so will see a GP today about my knees. I have OA in my spine so could be that.

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to Hockey_player

Just been to GP and she’s certain that I am OA in both knees. She gave me a steroid injection in the worst, need to return in 6 weeks for an injection in the other.

She suggested physiotherapy through work but if it doesn’t improve then replacement joints at some point.

Can I ask, do you continue to exercise, just avoiding obvious triggers like leg press? I still have some weight to shift and was going to gym 3 times a week and HIIT 3 times a week. I’ve done very little for 3-4 weeks and am eager to get back to it.

Hockey_player profile image
Hockey_player in reply to RosieTheRoo2023

Riding my e-bike causes no pain so I ride my bike a lot. I am taking some aerobic dance classes (Zumba). I am avoiding fast moves with high knees and also fast bent knee kick backs because they cause pain. I am back to playing hockey but am sticking to forward because defense hurts my knees. The worst thing for me is sitting. Gentle movement makes things better. Sitting for too long causes more pain. You say she is "certain" and is suggesting joint replacements. I hope she did an x-ray? I am probably not as bad as you. The x-ray looks more like typical issues from someone who was very active when younger. I use my legs a lot (hockey, dancing, biking) and have not been doing leg presses. I am avoiding exercises that have me kneeling (ow!) or like child's pose (too much stress on knees). I have problems with my quad and calf muscles being too tight and that causes more knee pain. A massage gun or foam rolling helps with that.

RosieTheRoo2023 profile image
RosieTheRoo2023 in reply to Hockey_player

I was surprised that she was able to diagnose OA without X-rays but she had the pains in certain places she manipulated along with crepitus she could hear was enough. I asked if it was worth using my private healthcare but she said at this point they would do exactly the same treatment.

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