When will I see improvements from Injections?

[PhilAB]

Hi was just recently diagnosed with pernicious Anemia more or less on my 47th Birthday. I have been feeling tired, fatigued, depressed, irritable and lots of brain fog for about 1 year. Initially doctor just told me I had anxiety or depressed, so after spending over 1000 pounds for private therapy, 2 different therapist told me I was maybe mildly anxious (but made sense with how ill I was) and definitely not depressed. With covid 19 I avoided doctors but after tingling in my legs and feet I thought enough is enough. Lots of new blood tests and told B12 was 127, they then tested me for PA and also a candida gut infection. Came back positive, I have had 5 injections over 2 weeks but I am now in fact feeling worse. I am on a major health kick and only eat a mainly organic diet with no sugar and avoided bad carbs. When will start to get better as my tinnitus is getting worse? This has been the worst year of my life, the brain fog has destroyed me as I am very active and mentally strong. I was about to get engaged last year but my girlfriend ended it as she could not deal with my behaviour. Any help would be greatly appreciated.

[wedgewood]

Please don’t despair ! P.A. patients often feel worse before they start feeling better . You will have low/or no stomach acid with P.A. and that will affect your gut . Probiotics can help that by re-establishing the good bacteria in your gut . It has taken you a long time to get the necessary treatment , so you need to be patient . You are doing the right thing with your diet . Don’t forget that you need vitaminB9 ( folate in food like green leafy veg and folic acid in tablets . 400mcg tablet would be good ) . B12 and B9 work together

. You have come to the right place for advice. There are really knowledgeable people on this forum ( not me unfortunately) . Let’s us know how you proceed . Best wishes .

[PhilAB in reply to wedgewood]

Thanks for the reply and PM.

After being diagnosed with a serious candida gut infection I went on a major health kick with my diet and supplements. I am eating lots of wild caught salmon, organic chicken and organic beef, with organic grass fed bone both. I am having lots of organic kale, broccoli, brussel sprouts, cauliflower, spinach, and green salad. Also organic sweet potatoes, bananas, blueberries. With candida I have to avoid too much fruit. Also I have a megahome water distiller, mainly have water with lemons. No dairy just coconut milk.

In addition taking vitamins D, B, C, zinc, magnesium. Also have 100 billion strength probiotic, L glutamate, acrylic acid, vit b12, candisolve, aloe vera, liv 52, and multi vitamin tablets.

[wedgewood in reply to PhilAB]

Well , you are doing all the right things . I’m sure that you will start to improve soon , but it cannot be soon enough for you I’m sure . Just don’t get discouraged .👍 Acrylic acid ? I’ve never heard of it .

[PhilAB in reply to wedgewood]

Sorry spelling mistake, I meant caprylic acid.

I am really annoyed with doctors as I had vit b12 level of 157 in jan 19 and then 152 in August 19. They never actually told me the scores till 2 weeks ago. At the time they said my blood came back as normal. I kept on telling them it is not anxiety or depression as I am a psychology teacher. Will research everything from now on. I am worried is a year a long time to be undiagnosed? Will this cause long term problems?

[wedgewood in reply to PhilAB]

If it really was only one year of deficiency , I don’t think that you will have long term problems . I was certainly deficient for about 15 years . I’d had strange short bouts of palpitations for a long time , ( nothing wrong with you ) but they are totally gone now . I’m left with burning feet , that feel as though I’m wearing shoes 2 sizes too small . ( but they had been totally numb . I’d been sent on my way with a B12 level of 150 , and many symptoms. “ Idiopathic “ was the diagnosis .But as you did , I paid to see a private doctor ,who diagnosed P.A. with a positive Intrinsic Factor Antibody test. Needed more regular treatment than GP would allow , so I have to self-inject But we are all different . I know people who have an injection every 3 months and are fine and others who need daily injections to keep symptoms at bay . And anything in between ! There are many symptoms ,and one usually has 4-5 . You can be better informed if you read books by the P.A.S. Chairman , Martyn Hooper . ( Amazon ) Do use Amazon Smile , and choose PAS as your charity, if you purchase from Amazon .

[PhilAB in reply to wedgewood]

I purchased the book right away after diagnosis. But, I will also make PAS my charity from now on. I really appreciate all your help and kindness.

[Nackapan in reply to PhilAB]

You are doing all the right things.

I was more ill initially . An I jection would start headaches and tinnitus amongst other things .

It's a rollercoaster hang in there

[PhilAB in reply to Nackapan]

I have been experiencing brain fog, headaches and tinnitus, whilst also being so tired. Fresh air seems to help. It's been bad for about a week now. Just got some B9 folic acid as recommended by wedgewood.

Thanks for support.

[Nackapan in reply to PhilAB]

Yes get bloods done too . Vitamin d folate iron ect. I supplement according to what's needed.

Fresh air always good.

[Nackapan in reply to PhilAB]

I was also sent down the mental health route . Told I was having an anxiety attack in a and e . The only thing I tried was amitriptyline to hel9 reduce headaches. Didny suit me. I have refused antidepressants as I know not depressed but ill. I have questioned this at times but a few hours of feeling okayish and I'm fine. It happens alot. I've spent alot of money on neurologist s. NHS one discharged me. They ruled out nasties like tumours ms .

Iv3 had to battle for every referral and more regular b12 injections.

MRI and ct scans were done .

At least you have a diagnosis. That will help you.

I had anxiety and was paranoid at times . I look back and was probably getting I'll over 3 years. I know realise al the signs were there and all symptoms of low b12. M y first ever b12 test done wad 106.

I was relieved at the time. Didnt realise the rocky road ahead.

I'm sorry you lost your girlfriend

Testing times when ill.

I've been disappointed with many friends. It really does sort the strain from the chaff

Things will improve

[Hidden in reply to PhilAB]

Hi Phil. Like you I was a healthy 51 year old before being diagnosed 2 years ago with b12 at 171 do your doctor should have been alerted to your b12 first time around. Like you I also had a Candida infection and it tends to reoccur. I’ve been on fluconazole three times! Did your GP test you for this? I had to go private. I have a diet similar to yours and still have problems. Horrible digestion and weird aches and pains all over. My leaky gut test was negative though.

I also developed pancreatic insufficiency and take Creon tablets with meals to enable me to digest food.

In terms of how long it takes that’s very individual. I still work and exercise but know I won’t get back to normal. I think if I could sort out my digestive issues that would help most. Some people on here have used Symprove and got their gut bacteria back into shape but I was in it for 12 weeks and it did not help. It is only 20 million cFU per swallow. Like you I’m on 100 billion. I had a comprehensive stool analysis test, privately, and the amount of pathogenic bacteria in my gut was shocking. Took 2 years to get to this state with antimicrobials and diet changes and I’m still not there as I say. I SI every 2 days and that really does help. The PAS is funding research into the microbiome and it’s interplay with B12 injections. The first phase of that has shown there is a difference in the gut microbiome between those who need more frequent injections and those who need much less. I really think this is where the answer lies. Stuck in there and let us all know how you get on.

[JAMV in reply to wedgewood]

I am currently taking probiotics. How will I know when my gut has healed and is able to tolerate sublingual b12? What tests do I need? TIA.

[wedgewood in reply to JAMV]

You should be taking B12 already if your B12 deficiency is due to dietary reasons . If your deficiency is not due to dietary reasons you need B-12 injections . Dietary reasons mean not eating food from animals Meat fish eggs milk etc , or only very tiny amounts . Can also be caused by medicines like PPIs , some diabetes drugs , abuse of nitrous oxide ( laughing gas)

[SunnyWorld]

Hi, it took me a while to feel better, a few months I think for tinnitus, thank heaven that improved! The rest I don't remember still have poor memory, it has improved but I could hardly string a sentence together before injections. I still have to write stuff down esp if going to docs or forget why I'm going.lol. hope you feel better soon.

[Seth12345]

It took me at least a month to see some improvements. With that being said I got new symptoms. I'm at month 3 and I'm just starting to turn the corner in a positive way.

(I'm always careful to say that though because this illness is ups and downs)

[Hidden]

Hi, I found taking folic acid tablet daily really improved my feeling of wellbeing. I take kefir in a homemade smoothie daily too. I was around the same level as you when diagnosed 5 years ago. Your post struck a chord with me as my relationship nearly fell apart too. Five years on, I run 5-10KM a day and I've just landed my dream job. There is hope, sending positive vibes!

[Bonjourtristesse]

I think I was probably deficient for 20 years; fatigue, numbness in arm and leg and brain fog. I’ve seen very good improvements, not realising how much feeling I had lost until it started to come back. No longer needing 3 hour naps in the day. I definitely felt worse initially; terrible pins and needles. My doctor wouldn’t try me on b12 injections and said my levels were fine. I paid for weekly injections for 2 months and had monthly after that. I’ve started self injecting now because of the pandemic and not being able to access private injections. After missing 2 months the numbness was coming back. After 4 injections I’m feeling much better.

[Knowlesm]

Hi Phil

You're in thehowever theyplace here there are people with lots of experience to help. Like you I was at the end of my tether with all the usual symptoms I only found out my B12 was 150 because I signed up for the online system at my surgery and found my test results there.

Sadly like so many I had to resort to Self Injection as my doctor said there was nothing in my blood tests abnormal. However I was being pushed around every specialist for unexplained iron deficiency and after 2 colonoscopies 1endoscopy and 4 cat scans the specialist couldn't find anything however they failed to tell me I had Atrophic Gastritis.

I won't bore you with the rest but after cancer surgery a couple of years ago things came to a head and I took matters into my own hands as I found the anaesthetic neutralised B12. Now I am recovering slowly with a new sense of purpose and feel the best I have ever felt in many years. Needless to say things like tinnitus are slow to recover but the tiredness and anxiety have gone so long as I SI weekly this I have found is my optimum level.

I hope you improve as well as I have and don't give up hope it may take a little while but its worth it in the end. I was 52 when I found I had B12 deficiency and now I have my life back.Take care Mark

[KristinCC in reply to Knowlesm]

How did you know it was atrophic gastritis and not just gastritis? I had an endoscopy several years before PA diagnosis where I was diagnosed with just gastritis. I wonder now if it was atrophic gastritis and the doctor just didn't know. I read somewhere those two go hand in hand. Can you do anything for it?

[Knowlesm in reply to KristinCC]

Hi Kristin

Yes I was having tests for unexplained Anemia (Low Ferritin ) and the endoscopy results showed Atrophic Gastritis following this I had 4 cat scans which showed nothing in the intestine. But what stunned me was the gastro specialist, despite knowing my blood results and me telling him my symptoms said there was nothing irregular😬

Even when my Ferritin was on the floor and my B12 at 147 along with other bloods showing signs. Yes it can and it causes low stomach acid. I would push for another endoscopy

Regards Mark

[KristinCC in reply to Knowlesm]

Thanks for your reply. I had very low ferritin as well. I haven't been terribly impressed with my gastroenterologist so perhaps it's a good time to look for another doctor.

[Knowlesm in reply to KristinCC]

Definitely and dont be put off keep pushing for a diagnosis. I had to resort to SI and have never looked back,

The forum is always here for you.

Dont hesitate to ask

Mark

[Knowlesm]

Apologies for the nonsense at the beginning my tablet has started predictive text and I cannot understand It😨 Mark

[PhilAB]

Dont worry Mark, thanks for support and advice. It has been so hard, I actually thought I was dying. I told my mum this may be the end for me. I am upset with the medical treatment.

[Knowlesm]

Hi Phil

Your so right I felt that way and no one believed me including my doctor keep strong and you will get your life back. We are all here to support and help

Mark

[LittleA]

I have regular injections, I’ve started self injecting too and I feel tired for a few days it’s natural to be I would also get your vitamin D and folate acid tested, if these are low they can contribute to fatigue and feeling tired.

All the best

Little A

[PhilAB]

I am looking into self injecting as I cannot go back to how I was for the last year. Little worried about self injecting but will get my head around it.

[Nackapan in reply to PhilAB]

I do self injecting now. I do subcutaneous ones. So far so good. Doesnt hurt u like when the nurse does it.

I do like the feeling of control. Too early yet to see if new regime paying off.

[Knowlesm]

Hi Phil

Just ask as we have been there and we can give you all the support you need it is a game changer.

Mark

[PhilAB]

Thanks Mark. I will be seeking advice about self injecting.

[PhilAB]

Hi, sorry to be a complete noob. But I registered with mycare in germany and I am trying to buy b12 modules for injection. I am unsure what they look like and I am sure it says currently on delivery to DE which is germany. Thanks in advance.