Hmm so I’m just wondering, do those of you with PA that self inject regularly still suffer extreme fatigue and body aches and pains or other symptoms?
I have celiac disease and that’s in remission thanks to a gluten free diet and I self inject fortnightly. I follow a good gut health diet but was told today by my consultant that the cause of extreme gastritis (endoscopy last year) is not the cause of celiac which is now in remission but the pernicious anemia.
He almost gleefully told me I’d have that for the rest of my life (gastritis) and nothing would heal it when I said I follow a good gut health diet and recognise the gut mind connection in relation to my mental health declining. I say gleefully as he was very dismissive and didn’t want to engage with this conversation in any way.
I’ve had to give up work due to extreme fatigue/ aching muscles and the effect this has on my MH alongside an intense job role where I was supporting people in crisis.
I’ve had all my bloods done and these are fine (I’ve looked at the ranges). I guess if I know this could be the cause and not something else I’ll stop searching and start managing and accepting. If that makes sense.
🙏 love to all
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I am sorry to read. Unfortunately, doctors are not taught about nutrition. Have a look at the Gut-Brain Axis and it is definitely worth buying Datis Kharrizhan’s book Why Isn’t My Brain Working.
It is a dip in and dip out of book with case studies. He discusses gluten and ways to bring down inflammation in the body (and brain) by both diet and supplementation such as ginger, curcumin (found in turmeric) and Resveratrol.
Mega dosing with vitamin C (water soluble) could also be beneficial.🤷♀️
I was speaking to a man who knew a biochemist. The biochemist produced some fantastic research on mega dosing of vitamin C. They were offered £1 million not to publish their work. I smiled knowing who has that as spare change in their pocket.
We are all different though. So, if you hate the taste of ginger then it is not for you. We all try things in a desperate attempt to manage illnesses.
Narwhal thank you! I have just had a read of some of the reviews on Amazon ref the book and am hooked before I’ve got it - also made over a tenner savings ordering it second hand from EBay which I always prefer doing anyhoo.
Hmm interesting re Vit C - a nice easy one too. I’m assuming the 1000mg solubles. Yes that made me smile too. No need to ask who they were 😃
I too prefer second hand books. Last week, I purchased a very old medical book from an antique shop.
The THEY that we both smiled about, for others, was not Old MacDonald. It is Big Farmer (Pharma), E-I-E-I-O! With a quack, quack here and a quack, quack there. 🦆
Please note that a quack is a person who pretends to have medical skills or knowledge. 😉
Have you tried increasing the frequency of your B12 shots?
You refer to blood tests in your post; I’m wondering, did you get your thyroid tested? The range for TSH is ridiculously wide and a ‘within range’ result doesn’t preclude a thyroid problem. I ask because your symptoms could well be caused by your thyroid. The TUK forum on this site is full of people with apparently normal thyroid levels yet very clearly have a thyroid issue.
Thank you for your reply - my TSH levels were 1.82 and I’ll take a look at the forum. I kind of felt every other week was going well for a while with the B12 jabs but I guess I might go back to every other day for a while. Weird how this may be the most obvious but my brain is befuddled. Thanks for the reminder
TSH alone is a wholly inadequate measure of thyroid function. You need to test T4, T3 as well as TSH. Also good idea to test for antibodies.
Doctors usually only look at TSH. They would have not spotted my autoimmune thyroiditis if they had only paid attention to TSH, even though I was feeling extreme fatigue, low mood & irritability .
Well, I was a clinician who knew nothing about P.A./AMAG/B12D,
I was old school. I would receive blood result reports back. Then meet the person, tell them I had the report. Explain that I was going to wash my hands, ask if it was okay to examine them (informed consent). Then state, Tell me how you feel ?
I would explain that the laboratory had sent arbitrary figures. If anybody wanted a real conversation with me it would include The Law of Averages and even then I would ask which average are you talking about ? Mean ? Median ? or Mode ?
Wow - a girl that can do a little more than add and subtract !!
I deviate from the standard 🤣😂 .
Standard deviation is denoted by the Greek letter sigma. I studied Mathematics and worked with numbers before working for the NHS.
Hi Dandelion, thanks - how did you manage to get tested for the T4 and T3 as well? I’m in the UK. I’m going to send a message and ask for these today. My mood is low and my irritability and fatigue are high lol what a fantastic combination 💃 😃
The thyroid forum on here is super helpful. I recommend you join that if you suspect thyroid. Everything I know I’ve learnt there. They will also be able to advise on meaning of results if you post them, because most doctors ( and endocrinologists even ) are not trained in interpreting them correctly, unfortunately.
You can ask your doctor to test for TSH, T3, T4 and antibodies. Do you have a good relationship with your gp? They will not always agree, but it’s worth trying.
In my case, I had an enlarged goitre and they took that very seriously, because it’s a visibly and physical symptom, and could also have been caused by cancer. (We often don’t get so lucky when we report fatigue or mood. )
They found the antibodies then. They put me on yearly monitoring tests. When I went in to the nurse to have my bloods taken, I asked the nurse about what they were measuring and she was happy to just click T4 and T3 on her screen, too.
If doctor doesn’t agree to test you can get ones privately, too. For example at medichecks or blue horizon.
Make sure you test early in the morning on an empty stomach.
Test for Vitamin D, B12, folate and iron, too.
People with thyroid issues tend to be bad at absorbing nutrients, thyroid disorders often go together with deficiencies in Vit B12 for example.
What a helpful consultant - not!!! As you know gastritis is an inflammation of the gut which can be caused by a multitude of things. I don't understand how he can be so sure it is all caused by PA and can never be cured. And even if it is most symptoms of PA can be resolved with enough B12. Maybe you need more B12?
Before my diagnosis I had terrible gastritis and felt tired all the time - I was always napping. I too am a celiac. B12 helped a lot but didn't resolve things completely so I did a lot of research on how to get better. As well as cutting out gluten I also completely cut out dairy and massively cut down on sugar because both those things can irritate the gut. I miss gluten, dairy and sugar but I don't miss acid reflux.
I find I have much more energy if I eat a low carb high protein diet. I hardly ever have to have nap now.
So don't give up and resign yourself to a life with gastritis. My gut feeling is that you aren't getting enough B12. But I would try cutting out dairy as well. People with celiac disease are often lactose intolerant as well because their small intestine is damaged. They cannot break down lactose well.
Thanks Charks - yep going to up my B12 and also go back to cutting dairy out entirely. I had done but then it’s crept back in during a period I felt fairly well. Also I’ll consider the low carb high protein diet advice - I’ve heard keto diet works well for celiacs. I eat v little carbs but probably not enough protein. Thanks again 😊
There are carbs you can safely eat. Oats have no gluten in them and you can buy oats they label as gluten-free which means they have been careful not to cross-contaminate them. Rice, quinoa, and buckwheat are also gluten-free but be careful to get some that is not cross-contaminated. Beans and corn have more carbs than some other veggies. Our brains use carbs. I personally am not convinced that a keto diet is healthy. I think a Mediterranean diet is healthier- just modify so you do not eat gluten (or dairy if that is not good for you).
hey, sorry to read your message, that sucks. Have you looked into leaky gut, SIBO, SIFO etc? I am hypothyroid (AI) and went through a long gut health protocol with probiotics, all manner of supplements, eliminating all kinds of things. Game changer for me was dairy free, not immediately but after about 2 months. I’m convinced L Glutamine and NAC also helped along with black seed oil, S Boulardii. Hope you find your answers 🌱
Thank you - what an informative bunch you are. My brain fires up when I read advice and how well people are managing.
So uplifting to hear people healing naturally via their own research, I just seem to often slip back into the murk as I can’t seem to retain much of it. But I’m definitely documenting all of this and hearing a lot about Glitamine and NAC. So another one to add to the read up on it list.
Did you make your own protocol or find one documented somewhere that works well for you? I know one size doesn’t fit all.
I followed Izabella Wentz mainly with a bit of podcast and bits posted here by helpful members. Izabella is a pharmacist in the US who has Hashimoto’s / AI Hypothyroidism. But the AI diet but would I guess apply to all AI.
Another one to look at is Dr Sarah Myhill’s paleo keto approach. I can’t do the keto bit as it damages my MH over time but the paleo bit is spot on for what I need.
bless you that’s a lot to deal with - thank you for replying and the information. I’ll be reading up on T3 if I think it’s relevant and wish you well 😊
I stopped taking b9 a while back, while my blood test levels show it is ok it’s something I need to get back on. Clearly I also need to get back on the ball and become more informed about a lot after reading these replies. It’s hard when your brain feels like it’s wading through treacle to work 😜
If you're injecting b12 you should definitely be supporting it with b9, no matter what your bloodwork says. I suggest 5-mthf but different people do better with different forms.
Hi! Im so sorry to hear what youve experienced. Are you taking daily cofactors to support uptake of your B12 shots? Are you injecting intramuscularly every day or every other day?
Thank you Shawn - After reading Dandelions post I realise this is something I need to do. What do you take. I was injecting every other week but I’m going to go back to every other day?
That sounds like a good plan; at least every other day. I take a 1000 mcg intramuscular shot of cyanocobalamin B12 every day plus cofactors. I have found it to be critical to not miss a shot or cofactors to feel okay.
Hello, I still have fatigue. Mostly when my stomach is bothering me or when I am nutritionally deficient. Which seems to be a lot. I'm Eating mainly meat and veggies and nuts and lots of Mangoes. Funny I crave mangoes. I assume it is because I need the Vitamin C and I can't eat citrus. I also had to give up goat dairy and cheeses which I started because they are supposed to be tolerable for those that can't have cow products, but apparently not for me. I also started amino acids which are helping greatly; in helping my body rebuilding itself. I actually can feel my muscles after being on amino acids. I am taking NAC and Magnesium daily and was told by the heart doc not to drink water without electrolytes. I take a half shot of B12 in the morning and another half shot in the evening. 1 ml daily unless I'm sick or stressed at which point I will take an extra .5ml. I seem to need more than 1ml during times of illness and stress. I also take 800mg of Methlyfolate 2x daily. So far I'm about 2months into this regimen and it seems to be working for me. It is a lot but I think my body was so malnourished that it is just taking time to recover. I've been gluten free for a long time, but because of ignorance ate a lot of carb heavy and nutrient void foods.
Also splitting my shot to twice daily has been game changing for me. I was having symptoms come evening while taking a 1ml shot just in the morning, daily; Splitting that dose has helped with keeping those evening symptoms at bay and is working better for me than the full 1 ml dose.
I had a lot of body aches when I woke up in the morning around the time of menopause. I took hormone replacement for several years and it helped a lot. I had those symptoms after my COVID-19 vaccine a couple of weeks ago, but they only lasted 2 days. My friends with celiac have to be so careful: for example, not eating toast made in a toaster that was used for bread with gluten, not eating anything fried in oil that was used to fry something breaded (a big problem in restaurants). Are you careful to not get trace amounts of gluten? I think that if you are feeling bad you should keep fighting for yourself. Sometimes it takes a long time to get a diagnosis. A lot of us suffered for a long time (years for me) before our pernicious anemia was discovered. If the doctor is dismissive, I hope you can find another doctor.
Hi. I have PA and Coeliac Disease. They are both separate autoimmune diseases and when you have one you're more likely to have another. I wonder if you need to work with a nutritional therapist for gut health to support the gastritis, do more shots for the PA and of course stick to the GF diet? I too still have fatigue but I think I need more B9.
Try a selenium supplement. After an expensive test done privately I was told I was deficient. Within a couple of days of starting a good quality supplement I was feeling a lot better. I have had to continue to take it as stopping it takes me back to where I was. The supplement trial will be a lot cheaper than having a test. Good luck
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GP says I am not anaemic but I am B12 deficient. I am confused!
Reducing frequency - am I hysteric?
Am I suffering from lack of Vitamin B12?
Am I dying?
