PA weight gain and numbness - Pernicious Anaemi...

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PA weight gain and numbness

Icomaria profile image
31 Replies

Hello PA community, I want to check with your guys if anyone has problem loosing weight, I have been on B12 for the nearly 10 years. I have been putting on weight and very hard to loose it. I pass menopause but still have hot flashes, constant numbness on my legs and fingers, specifically at night, I feel some weird sensation on my legs and belly I don’t know if it’s relates to PA. Anyone have this symptoms? Any advice what should I do?

Thank you

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Icomaria profile image
Icomaria
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31 Replies
KBird01 profile image
KBird01

Whilst the symptoms of B12 D/PA are many and varied, I watched a video a while ago about how low iron can make it difficult to lose weight. The weird sensations in your legs can be restless leg syndrome. Mine included crawling sensations, tingling and a feeling of cold water.Have you had your ferritin levels checked?

Icomaria profile image
Icomaria in reply to KBird01

I think it’s restless legs but the sensation is like a wave of cramp that starts on my legs and go up it’s irritating. I am always low on iron but I don’t like taking iron tablets as it makes me constipated, I also suffer of IBS😕

KBird01 profile image
KBird01 in reply to Icomaria

I take gentle iron every other day and it's much easier on your gut. A few people have mentioned they've had better effects with this.

Icomaria profile image
Icomaria in reply to KBird01

What is gentle iron? 🫣

KBird01 profile image
KBird01 in reply to Icomaria

Sorry for the delay in replying. As Noelnoel says, it's important to have an iron panel blood test before commencing supplements, as too much iron is also a bad thing. If your GP won't do this, you can order a private one.

If this shows a deficiency and you decide to supplement, gentle iron is a type of iron called Iron biglyscinate. I take solgar, but Holland and Barrett also do some. This is quite effective but easier on your stomach. Try taking every other day, as there is some evidence this is just as effective, but is easier on your stomach.

Icomaria profile image
Icomaria in reply to KBird01

Thank you for your advise, I will book to see my GP soon🙏🏽

Sailinglady profile image
Sailinglady in reply to Icomaria

Try taking the iron 3 days a week only, on an empty stomach with orange juice (for the vitamins c to help absorb the iron) and don't drink any tea or coffee for at least an hour after. Apparently, that's supposed to help avoid constipation

Icomaria profile image
Icomaria in reply to Sailinglady

Thank you Sailinglady; I will try it and see hope it works for me🙏🏽

Noelnoel profile image
Noelnoel in reply to Icomaria

Ask your GP for an iron panel test before taking iron. It’s strongly advised you do not take iron unless you know what you’re doing. If you find you need to supplement, Three Arrows is reported to be very effective and also gentle on the stomach. Also ask for

Folate

Vit D3

Thyroid panel to include FT3 and antibody test

So many people with PA also have thyroid disease. I’m not saying you do but it’s worth investigating if only to rule it out because at least then you know it’s not a dysfunctional thyroid gland that causing weight issues

Pop over onto the thyroid forum where you can ask lots of thyroid related questions. Doing all of the above will help you understand your weight problem

Icomaria profile image
Icomaria in reply to Noelnoel

Thank you Noelnoel👍🏽

Bebe74 profile image
Bebe74

Have you had your thyroid and vitamin D level checked? I had foot and leg cramps worse at night, and tingling in hands and feet which I thought was still effects of b12 deficiency coming back. Turns out it was also vitamin d deficiency, some of the symptoms are similar to b12 deficiency.

Icomaria profile image
Icomaria in reply to Bebe74

I had Thyroid checked but I am not sure about vitamin D, I will speak to my GP.

Thank you

NOTI1 profile image
NOTI1

I was late diagnosed because I was a woman; I thought that my symptoms were due to menopause as I was constantly dismissed by doctors. Interestingly, b12 injections ave been the only treatment that stopped my hot flashes. After 10 years I have recently increased SI in the hope that my other symptoms will improve.

MrsTuft profile image
MrsTuft

How often are you having B12 injections? Have you checked your folate, vitamin D and ferritin? X

Icomaria profile image
Icomaria in reply to MrsTuft

I take b12 injection every 3 month, and couple of moth ago my folate was low but the doctor said it ok now, I didn’t ask about vitamin d, I am low on iron too, I take tablets but not often as he complicates my IBS symptoms

MrsTuft profile image
MrsTuft in reply to Icomaria

I would check every single blood test result myself - the actual number/result against ranges - never let anyone tell you okay - how did your folate become okay if low and not supplementing? Check vitamin D. If low iron and can't tolerate tablets, get a gentle iron like 'Spatone' and take daily - it's slow but will gently slowly raise levels. Or iron infusion if that low which bypasses gut. You likely need B12 injections more often than every 3 months, like most of us. xx

Icomaria profile image
Icomaria in reply to MrsTuft

Mrs Tuft, Thank you for the advice I will check my blood test results I never thought about checking myself. Where do I get the gentle iron, I am not sure🤔

MrsTuft profile image
MrsTuft in reply to Icomaria

One learns to check everything yourself. GP can say ‘normal’ but you’re rock bottom of normal. You want to be optimal. You can buy Spatone anywhere, Amazon, chemist,…

debra_bill profile image
debra_bill

I get IBS symptoms & restless leg when I need more B12. Maybe you could try self injecting a bit more often.

Icomaria profile image
Icomaria in reply to debra_bill

I do get IBS all the time, even when I just get the injection, but I need to pay attention with restless legs because it’s not often that I get it🤔

Thank you Debra

PaintLadie profile image
PaintLadie

I've been through this. I just had my gallbladder out and not by choice, I digress. After my surgery I started vitamin loading including all the co-factors as I was very mal-nourished. I also have a genetic mutation that makes methylation a bit harder for me. I am in Perimenopause as my ovaries have stopped working. So now I'm getting everything I need and am detoxing my liver and the weight is just melting off me. I think a lot of my weight was inflammation from toxic buildup.

Hockey_player profile image
Hockey_player

I was initially diagnosed with IBS. But it was not IBS because it cleared up as soon as I was getting enough B12. With your problems with numbness, the standard protocol is to use every other day injections of B12 until that clears up. I get the feeling that a large number of us on this forum cannot get by with only getting B12 injections every 3 months. My tingles come back after about 3 weeks so I get weekly injections to stay symptom free.

Hockey_player profile image
Hockey_player in reply to Hockey_player

Someone posted this really good article. One thing it says is: "Clinical and patient experience strongly suggests that up to 50% of individuals require individualized injection regimens with more frequent administration, ranging from daily or twice weekly to every 2-4 weeks, to remain symptom-free and maintain a normal quality of life."

journals.sagepub.com/doi/10...

Hockey_player profile image
Hockey_player in reply to Hockey_player

Your initial question was about weight loss. If you are tired because you do not have enough B12, it can be really hard to lose weight.

Icomaria profile image
Icomaria in reply to Hockey_player

I am tired most of the time, hence I don’t exercise, to make things worse I have pain on my knees I have osteoarthritis.

Hockey_player profile image
Hockey_player in reply to Icomaria

I was so tired before I got my PA diagnosis. I was sleeping about 16 hours per day. Maybe more B12 will give you more energy? It gave me back a normal amount of energy. I currently have a knee injury. I love riding my bike. I have an e-bike and it results in very little strain on the knees (especially appreciated going uphills). Swimming or waterfit exercises are also easier on the knees. I injured my knees playing ice hockey. I am going to physio and a chiropractor and they are slowly getting better. With osteoarthritis, physio/chiro might not help you. I had a friend who greatly benefited from steroid shots in her knees. I hope you are feeling better soon!

Icomaria profile image
Icomaria in reply to Hockey_player

I hope you knee gets better soon and you can ride your bike again. Yes I tried water exercise in the past it’s really help me but it’s hard to get place for those exercises in gym near me always fully booked.

Hockey_player profile image
Hockey_player in reply to Icomaria

I am not having any problems on my bike! I biked 20km today. I am just not skating as well as I would like when I am playing ice hockey.

Icomaria profile image
Icomaria in reply to Hockey_player

I will discuss this with my GP, hopefully they can put me in for more frequent b12 injection.

Hockey_player profile image
Hockey_player in reply to Icomaria

I find it so much easier to have my husband do my injections for me. I can get them in just minutes and I can get them when I am out of town. It takes me 25 minutes to drive to the doctor's office so it takes more than an hour if I wanted to get one there. It would drive me crazy to have to go there once a week for an injection.

Oneash profile image
Oneash

Cut out sugary food and alcohol, keep starchy food low. Insulin causes the body to go into fat storage mode. Keep an eye on the calories, make sure most of them come from meat, fish, eggs, fat (butter, lard, olive and cold pressed oils) and green leafy vegetables. Then you'll get your iron and the right balance of omega 3 & 6.

Eating fat, without carbohydrate, not getting excess calories, fat being more calorie dense, actually kicks the body into fat burning mode.

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