Weight loss

[Bmwx]

Hi everyone

I was diagnosed with PA , it took quite a while to get to the bottom of my symptoms

I was fatigued, confused, but the main issue was enormous weight loss. To this fact they investigated me first for cancer. Several scans and finally a radioactive scan a clatterbridge hospital

Fortunately these were all negative

I lost 40kg in weight and unable to get any weight back on at present

I have my B12 injections monthly even though gp will only give it me every quarter

My private consultant says I need it monthly and has taught me how to self inject as my partial cell test are strongly positive so cannot take oral supplements

Has anyone else suffered with the weight loss , I was 110 kg but now 68 kg and seem to be holding this weight.

Thanks 🙏

[Nackapan]

Glad to hear all your tests were negative. I lost weight but not the huge amount you have. I found b12 injections speeded uo my metabolism. I eat alot and am unable to move alot. Suprised i lost a stone rather than put it on. I was not big to start with so pretty skinny now. Don't drink alcohol at present and in bed 12 hours at least (more at present) perhaps you are eating less and possibly not absorbing all your food? Have you any gut issues. Muscle is heavier so perhaps being ill you have lost some muscle too. The main thing is to eat well and regularly. Hold onto the weight you have . Take supplements . Go by your symptoms if all the relevant years have been done. Hope you gain a bit soon and feel better

[Bmwx in reply to Nackapan]

Hi Nackapan

I have lost all my muscle. I also have autoimmune disease I have been told

Guess not getting much out of my food to

Thanks for your reply. Makes sense metabolic rate increase with weight loss

[fbirder in reply to Bmwx]

Actually, metabolic rate increases with weight gains

From the NHS - nhs.uk/live-well/healthy-we...

Research actually shows that overweight people have faster metabolisms than thinner people. Larger bodies require more energy to carry out basic bodily functions.

[fbirder]

I've read people say that getting their B12 deficiency fixed has caused them to lose weight, and others say it made them gain weight.

My theory is that a B12 deficiency causes depression which can affect people in two ways. Some lose their appetite and others 'comfort eat'. I was in the second group. When my depression waned so did my need for cakes and choccies. So I lost weight.

[BadHare]

I knew something else was wrong when I couldn't be bothered to eat & making a pot of tea was too much effort. I only lost a few kilos, but in about 6 weeks.

I couldn't get a positive diagnosis, even with the active B12 test as I'd only stopped B complex supplements for two weeks. I do know I feel pathetic if I leave my jabs more than 10 days apart without taking sublinguals, so I tend to inject weekly. This frequency has allowed me to drop my thyroid hormone intake & parasthesis (blamed on FM) is now rare.

[sbadd in reply to BadHare]

Hi there what do you mean by dropping thyroid med, im currently on thyroid meds aswell, do you mean after having b12 it has enabled you to decrease thyroid meds?

[BadHare in reply to sbadd]

I find I need less T3 since I started injecting B12, though the same amount of NDT between seasons.

[deniseinmilden]

If your parietal cell test is high it is likely that you aren't digesting your food or absorbing nutrients from it properly and this could partly explain it.

[Bmwx in reply to deniseinmilden]

Hi thanks for your reply I guess your right. I appreciate yours and everyone’s time to help

[Hidden]

I lost a large amount of weight like you and also like you had all the scans including the radioactive one. My gastro told me that PA causes absorption issues and he wasn’t surprised I had lost weight. I lost 20% of my weight in 2 months. After more tests I was found to have exocrine pancreatic insufficiency ( but no damage to the pancreas itself). This means my pancreas wasn’t producing enough enzymes to digest my food and so wasn’t absorbing the nutrients. I now take Creon which has fixed that thank goodness. Might be worth getting tested - very simple test. Good luck.

[Bmwx in reply to Hidden]

Hi martini

Thank you so much I will definitely ask for the test you suggested

[Hidden in reply to Bmwx]

No problem. You need to ask your GP or gastroenterologist to check your elastase. Initially mine came back at 330 within a range of 200 to 1000. 6 weeks later it was 170 so do know that it can decline quite quickly. I have great doctors but have to be on top of them!!

[deniseinmilden in reply to Hidden]

Thank you for the heads up on this!

I'm plucking up courage to face the Drs to see if there's anything they can do to help me and what you speak of could be my problem. Knowing there's a solution if it is makes it more worth the hassle!

[Hidden in reply to deniseinmilden]

Good luck Denise. See my reply above. It is under evaluated but very simple to do. It’s gaining more recognition. Clive on here has it too.

[MichelleLee]

I went from 267lbs to 125lbs no idea why or how to stop it.

[Annkapp in reply to MichelleLee]

I kept losing weight (both fat and muscle) and couldn’t stop either. Pretty scary because I felt i was starting to lose heart muscle. Began taking digestive aids in an attempt to stop losing which worked for me. I have not regained much but at least not losing as long as I take a good amount of Betain HCL and Pepsin, ox Bile and Lypo Gold by enzymedica (with Lypase) at every meal.

[MichelleLee in reply to Annkapp]

TY,Annkap

[MichelleLee in reply to MichelleLee]

I lost 100 the first yr, then started paying close attn. to how food was hurting or helping and I'm winging it but average weight lose of 3-4 pounds a year. I'm melting.

[Annkapp in reply to MichelleLee]

My weight loss was also slow over a long time period. At first I didn’t really notice and then over time it was welcome because I had extra weight I could do without. I didn’t realize I had a problem until I started losing muscle weight. The digestive aids are what finally stopped me from “melting away”.

[Bmwx in reply to Annkapp]

Thanks will give it a try

[Annkapp in reply to Bmwx]

Hope it works for you. Here is a link on how to supplement with Betain HCL and Pepsin.

healthygut.com/articles/how...

[Annkapp]

FYI ox Bile (also called bile salts) and Lypase are for fat (and fat soluble vitamins a, d, k, e) digestion.

[Statesideheather]

I did have weight loss. I've been on the small side all my life and suspect I always had B12 issues to some extent. But the last year when I declined rapidly, I was barely 100 lbs clothed at the dr. I would do pushups (as much as I could do being weak), but my muscles weren't getting bigger or defined. It's like I didn't have any! I started on the oral Thorne B Complex right away when a cbc came back with abnormal rbcs. I did not think that a vitamin was the problem but I continued taking it and improving, including weight gain. My weight now fluctuates between 130-135 lbs. I don't really work out or do anything but my arm muscles are large. Besides pregnancy, I've never weighed this much. I do inject now every few days. I'm also aware that I need to get a good exercise routines I don't continue the weight gain! Once I started getting injections monthly, then weekly, now more often, I gained more weight. It's hard for me to believe that women go to spas to get a B12 shot to lose weight! I do feel that my weight is up with more B12, as in I believe I would lose weight of I suddenly cut back to once a month. Not sure if that's true but the weight gains increased with frequency.

[Av42]

Just before being diagnosed I went from 8st 6 to 7st 6 in a month and I felt terrible and scared it took about 6 months to get up to 8st and now nearly 2 years later go between 8st and 8st 4 as appetite increases and decreases between jabs . Now I know to stuff my face on days I feel particularly hungry as if I don’t and have a few with little appetite lose weight quickly .

[buster_uk]

I know it's an old post. I lost twelve stone in two years back in 2013/14 had all the tests all neg. Until I found out in June 2014 my b12 was 108.

[a1ngel]

Hello, I am Tom!

It's my wife that has PA and I worry about her, so I check out how other people are doing and coping to perhaps learn something of value, or anything to alleviate her symptoms, improve her quality of life.

Do you find since you started to self- inject every month that you have improved greatly, averagely, or still having problems?

What symptoms do you have when the medication is not working adequately enough?

If, for some reason you prefer your own privacy, I will completely value and respect your choice.

Blessings & good health always!

TOM.

[Bmwx]

Hi Tom

I know get weekly injections from my NHS go practice nurse, as my symptoms started to come back sooner than they thought

I have been very lucky to find a consultant whom really understands PA , he has got my GP on board with weekly injections

I am feeling great again. If for some reason NHS stops weekly treatment I will self inject

Regarding symptoms I faced

Extreme fatigue

Irritability very short tempered

Depression and anxiety

Constipation

Brain fogs (confusion)

Strange thoughts

Freezing fingers even on hot days

Tingling in right lower arm

Hope this helps your wife and you.

Steve