edeuweed

[edeuweed]

I'm new to all of this, although I was diagnosed with PA in 2016........One of my constant issues is with dehydration at night.......causing sore throats and effecting sleep........My doctor says its the antidepressants I'm on.....long story....misdiagnosis about 15 years ago....but I've only struggled with it since having B12 jabs.......does anyone else suffer with this......and, if so,,,do you have a solution........

[Sleepybunny]

Hi,

Welcome to the forum.

You might find it helpful to join PAS (Pernicious Anaemia Society).

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS have a helpline and lots of useful leaflets.

pernicious-anaemia-society....

There are PAS support groups in UK which can be a good place to swap information.

pernicious-anaemia-society....

B12 Info.com is another website I've found useful.

b12info.com/

Are you getting enough B12?

Next link outlines two recommended treatment patterns for B12 deficiency in UK

1) for those with neurological symptoms

2) for those without neurological symptoms

cks.nice.org.uk/topics/anae...

PA is an auto-immune disease and having an auto-immune condition increases the chances of developing another one.

Have you had any screening tests for other conditions eg thyroid disease?

Might be worth you putting any thyroid results on Thyroid UK forum on HU.

I also wondered if you've had a recent test for diabetes as this can sometimes lead to dehydration symptoms.

NHS link Diabetes

nhs.uk/conditions/diabetes/

Diabetes UK (charity)

diabetes.co.uk/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

There's a lot of useful info in the pinned post "Various PA/B12D Resources".

Pinned posts are on right of screen if on computer.

I hope you find answers and a way of helping your symptoms.

I'm not medically trained, just someone who suffered from unrecognised and untreated B12 deficiency for many years.

[edeuweed in reply to Sleepybunny]

I am a member of PAS. I will check I've read all of the information you've suggested........thank you for all of that help. I have written another reply to Nackapan about already having another auto immune problem...hyperparathyroidism. My faith in GPs is negligable....but keep hoping.........

[Nackapan]

Ove not heard of that particular symptom linked with b12 injections on their own.

Hopefully others will offer their experiences

If a mis diagnosis ,do you still need 5he antidepressants?

If the doctor thinks they are the cause of your dehydration symptoms ?

Meanwhile alot of veg in season now help stay hydrated:

Cucumbers

Peppers

Water melons

Strawberries.

Greens

Soup broth

And avoid diuretics like coffee, tea.alcohol.

Hope you find a solution soon.

[edeuweed in reply to Nackapan]

Thank you.....I was given anti depressants and HRT to solve some of the symptoms I had...GP said age/menopause..that was about 15 years ago. So a misdiagnosis. The GP has already missed hyperparathyroidism( possibly auto immune) but after the tumour was removed I still had many of the symptoms.....big cross over with PA. It took maybe 4 - 6 years to diagnose that.....again.......age/menopause!!!!!!!!!! Nobody ever checked my B12 levels until I asked. I have been struggling with all these issues for over 20 years, and still have more questions than answers. Last year I thought I'd slowly take myself off of the antidepressants....got down to half....felling very pleased with myself.....then I developed essential tremor...Neurologist said I'd had it a long time but the antidepressants were masking it....I believe I had PA 20 odd years ago.......I believe the tremor is to do with PA...........However, none of that is useful.......Just trying to help myself.......like everyone on this forum.

[wedgewood]

In 9 years of reading posts daily on this forum , I have never heard of this as a symptom of B12 treatment

. I can only think that it probably happened coincidentally with your B12 treatment.

But of course it still remains a possibility. There is an answer to it somewhere. I hope you hear from someone who can help you on this . Best wishes .

[edeuweed]

Thank you so much for your reply......It seems PA constantly throws up more questions than answers.

[PaintLadie]

I went to the ER with severe dehydration not long ago. Long story short I am on lots of magnesium and have been told not to drink water with out electrolytes in it. Also you can apparently have to much water so sticking to 6 - 8 oz glasses/day is important. Unless you for whatever reason need more. Drinking too much water can pull minerals out of your body making you more thirsty. This happened to me after switching my water filter and apparently only drinking sterile water. If you've been b12 deficient for a long time your other minerals and vitamins may be off as well. I am constantly low on D/K/A, MAG, and Calcium so I have to supplement now more than I expected.

[edeuweed in reply to PaintLadie]

Thank you so much PaintLadie.........I'm sorry to hear your post......but I'm finding it very interesting from my own point of view....I'm taking your comments on board. This week I asked a local chemist if he would give me B12 jabs so I could have them more frequently...he refused saying in the UK it's only licenced for every 8 weeks.......which I knew.........but that my bloods will be being tested every 5 =6 weeks..........hahahahahahaha.....never......maybe any other deficiencies would have shown up.......Again, thank you..........

[Hockey_player]

I have problems at my ski condo because the air is dry. A cold air humidifier helps me to avoid the sore throats. Sometimes when I have been playing a lot of hockey (hockey players sweat a lot), I need electrolytes (I like green Gatorade) to retain the water I am drinking to rehydrate.

[Narwhal10]

Hi edeuweed,

Welcome. I am sorry to read. I like you have a dry mouth and throat which I have managed for 20 + years. Sugar free sweet in mouth to produce saliva and drinks to hand. I keep drinks in bed or sofa. I am so used to it now that I ‘sleep drink’.

I have coeliac disease with SIBO. You have another autoimmune disease but my knowledge of hyperparathyroidism is limited. So, I had a quick look, I am totally unsurprised to see it listed on the National Institute’s of Diabetes and Digestive and Kidney Diseases, symptoms of hyperparathyroidism. They have a nice picture.

niddk.nih.gov/health-inform...

Although, antidepressants may also ‘contribute’ to it.

I hope that is if some benefit.

🐳

[edeuweed]

Thank you so much Narwhal10.......very interesting.........though I am so sorry to hear your issues..........I am gluten intolerant....and have looked up SIBO.......I have had constant problems with my digestion since I was 11.......I'd love to come off of the anti depressants!!!! Again thank you..........

[Narwhal10]

My pleasure. I am so very sorry to learn of your suffering from such a tender age. It is a very slow process learning your own biochemistry and working out what you, edeuweed needs. So, far I have noted B12, calcium being naughty and vitamin D.

Do you use gluten-free guerillas on here ? Just us lot can be deficient in everything which I am. An amazing Professor said due to funding, there is not much research in Non Coeliac Gluten Sensitivity/ gluten intolerance. So, maybe worth popping on.

🐳

[edeuweed in reply to Narwhal10]

Thank you so much for that information Narwhal10.....I will have a look at gluten-free guerillas...........and, yes like you, I suspect, constantly trying to help myself.......though sometimes that's just too exhausting........

[Narwhal10 in reply to edeuweed]

Yes, it can be exhausting reading research. Yesterday, I got up, washed my dishes, emails, banking. Then flopped back into bed. Poured self into a bath, crawled out and lay on my sofa. Later, I threw on clothes and limped to the pharmacy.

It was a sloth not a Narwhal day which our bodies very much need. It is the ‘rest and digest’ part of the nervous system. I am not depressed, I suffer from fatigue.

😀

[edeuweed in reply to Narwhal10]

Allowing ourselves to rest is hard......I keep trying not to let PA control my life....but sometimes it's hard.........Need to count the wins!!!!