PA, neuropathy and celiac

[Aveytxenglab]

I'm happy to find this website about PA. I just started B12 shots and are praying they work and I feel better soon. I also have celiac disease, neuropathy in feet and raynaud's syndrome...all auto immune related. I look forward to hearing and learning more from everyone on this website.

[Sleepybunny]

Hi,

Maybe helpful to mention which country you are in as patterns of treatment and type of B12 used in treatment can vary between countries.

I'm in UK.

A few links that may be of interest...

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

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

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

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Films and videos about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals have.

I am not medically trained.

[Aveytxenglab in reply to Sleepybunny]

Thanks for information! I live in U.S. and just started on day 3 of B12 shots.

[Sleepybunny in reply to Aveytxenglab]

Are you having cyanocobalamin injections?

NHS in UK normally gives hydroxycobalamin injections.

There are also other types of B12 such as methylcobalamin and adenosylcobalamin.

I hope you start to see improvements soon....some forum members report that they feel worse for a while when treatment starts and then start to feel better.

[Aveytxenglab in reply to Sleepybunny]

I'm getting the cyanocobalamin and this is 6 the day, I can feel more improvement now. Switching to every other day next week, hope Dr doesn't reduce B12 too quickly. Thanks for your info!!!

[Cherylclaire Forum Support]

A lot for you to deal with, and the B12 deficiency alone can take a while to sort out.

You have probably also had the following blood tests -but just in case they've been missed out or were taken a while back, ask for your folate, ferritin and vitamin D to be checked.You really don't need anything getting in the way of improvements - and these are the most likely! Look for any low end results as well as in/out of range - useful to monitor direction of travel as well. If all are affected, thyroid may be struggling a bit too.

It can be difficult to disentangle symptoms. My GP generally tests these once a year now and is looking to find ferritin at around 60 ug/L or more to prevent any symptoms, Oral medicine consultant, helping with burning tongue and sore corners of mouth (angular cheilitis) prefers 80 plus. Takes a while to get there if low, and can be far from an unimpeded upward trajectory, so worth starting early. Folate, if low, would need to be treated after your B12 is under control however.

Take it easy. Post any questions or worries -always people around to help out.

[Aveytxenglab in reply to Cherylclaire]

Thanks for information. I've had lots of blood work, ferritin, vit d, thyroid which was too high and lowered dosage, comprehensive blood work that checks off alot of stuff. Have been on B12 shots for four days now...very slowly feeling better.. will go to shot every other day next week. Am hoping Dr doesn't take me off shots too soon .... I'm scheduled to see an endocrinologist Dr soon, not sure why I need to though? Might cancel. Does anyone get very hungry about every three hours? I have to eat or feel weaker. I eat before going to bed or I wake up about 4-5 am very very hungry and shaky. Have been tested for diabetes also, blood work showed all ok. Am sure I'll feel better with time...just frustrating.

[Cherylclaire Forum Support in reply to Aveytxenglab]

Glad you've had all the relevant blood tests. I'd take a positive response after four days, however small, as a very good indication.

I've not heard of the hunger problem before -but it might be worth putting a new post up asking that question. Introducing another question further down the page sometimes gets missed.

I've seen a lot of consultants- haematologists, neurologist, gastroenterologists, even a DNA expert - but not an endocrinologist. So not sure of your GP's train of thought there. There will be others on here who have seen an endocrinologist and may be able to explain what they might be looking at /for. Again, don't be disheartened if all your questions don't get answered straight away, just put another post up and the title will catch someone's eye. August can be a bit slow.

I have always gone to appointments arranged, no matter how off-track they seemed to me. For instance, the third gastroenterologist was the only one who did any tests at all- including for Coeliac- so there was a point to my GP's tenacity- even though I was certain it would be another 5-minute chat.

A different perspective can be helpful: I found that the consultant most able to recognise B12 deficiency and most knowledgeable about range of symptoms and treatment was from ENT. Unexpected -and very helpful when I was at a low point.

[Aveytxenglab in reply to Cherylclaire]

Thanks for information! I will see gastroenterologist in 2 weeks as I have celiac. Today is day 6 of shots . Woohoo!!! I feel better, not as weak, etc. I don't eat much per day, would have thought I would have lost weight... Basically stayed same for last 4-5 months. I read that pernicious anemia can mess with your metabolism, among other things, and I'm guessing that's why no weight loss . Anyone else feel the same? Have a good weekend.😁

[nellie237 in reply to Aveytxenglab]

Hi Avey,

Hunger/Coeliac/Hypothyroid

I was dx Coeliac Nov 2021. I was constantly hangry (give me food now, or I will bite you), and assumed malabsorption due to coeliac, but what didn't register at the time:-

In the same blood draw I'd had that gave me the coeliac dx I'd had my thyroid levels checked, and TSH was low, T4 high, and I reduced Levo by 25mcg per day.

Seven months later, the coeliac is very good, but still hungry a couple of hours after eating. Blood results show that I was still slightly over-medicated for my thyroid, so I reduced by a further 12.5mcg, and I think I may need another reduction soon.

I've been Hypo for 14 years, and gradually over the past couple of years my Levo requirement will have halved, which I find really odd because malabsorption due to coeliac should = increase not decrease.

[Aveytxenglab]

Very interesting. I ask my Dr to check thyroid cause I was soooo tired, test showed it was 25 mg too high. Dr hadn't checked it for years. I think it needs to be lower still ...levo is now 150 mcg down from 175. I've been on B12 shots for about 16-17 days and slowly feeling better. Hope you feel better each day.