Hi everyone, I am feeling so fed up so sorry if this post sounds miserable. I am on 10weekly jabs ,didn't have loading doses and have been jabs for about a year now. What I find hard I that I can have a really good spell then the gut issues ,fatigue, muscle and joint pain all come back. I know the advice will be more frequent injections but can't see gp agreeing to this
. Thanks for listening.hope you are all ok.
Are you keeping a diary?Have you had bloods done recently?
I find even after 3 years I'm still waiting for a symptom free day.
It all has improved but still erratic with seemingly no explanation at times
Have you tried tweaking your diet ti help your gut?
Prebiotic help sone butvyih havevto take them daily
Ask fir 8 weekly b12 . Thst should not be a problem to get
Does sound quite common though..all takes time I'm told !!
Thanks for your support Nackapan. It has really got me down recently.Sorry to hear you are still having daily symptoms. It's hard when your used to being active. I am now having a low carb. Diet.not a problem as I feel so nauseous and have little appetite.
I am taking Mebeverin , and Biokult.also started having lime juice with meal.
I have had bloods done 3 weeks ago and was told they were OK.
I wonder if I have slow transit gut. I am seeing the gp next Tuesday. I had to fight to get 10 weekly injections. She agreed to 10 weeks when I asked for 8 weekly.
I intend to write down all symptoms and ask about blood results.
Thanks for advice, it's good to know the forum is here.
Take care.
Magnesium may help your motility. Yes more b12. So sorry.
Thanks Susan Emily., do you take magnesium and if so how much do you take?
Hi Mrsmr,
I take magnesium threonate as advised by a private dietician - even they took it. It crosses the blood brain barrier.
It’s on eBay - 5greens - gluten, lactose free etc. I take 2 a day. Tell your GP though either preferably before supplementing.
If our guts don’t work properly EVERY system in the body will not be happy. However, due to the Gut Brain Axis (feel free to google if you wish) which is a very strong connection problems in the gastrointestinal tract will be reflected in our ability to do things, memory, attention span and mood.
Best wishes
Thanks Narwhal10, haven't heard of that before. Why would you need to tell gp your taking it? Take care
Hi Mrsmr,
It is as a formality. Basically, it’s saying:
1) I am being proactive and wish to be healthy because I’m not !!
2) Maybe you are missing the obvious. You are generally trained in pharmacology (so, how to prescribe medication, to manage an illness /condition, but you appear to know little about vitamin and minerals which is dietetics and the normal workings of the human body).
Best wishes
My daughter has low gut mobility all sorts. She used fodmao supported by a hospital dietician. Supported as they had no further suggestions
Took well over a yesr but etas much better now.
A limited diet but dies test this still .
She takes a daily prebiotic.
Caffeine free diary free fructan free Red meat free
But nausea abd bloating and reflux rarely now .
Horrid dealing with it all.
Severe fatigue can give me problems as foid just sits there then reflux .
Avoided that by eating my main meal at lunchtime. Not eating after 5pm!
Not my main symptom.
Do far managing that part of this horrid condition.
I’ve been taking a forkful of sauerkraut before breakfast in the morning and it does help,the first few days I felt like I had a sore tummy but it was probably the stuff settling into my gut,I suffer with recurring HPylori and p.a.It’s full of fibre so will help with low transit too.i bought from Amazon it’s called Biona organic Demeter Sauerkraut.best of luck it’s worth a try x
Love the name happyensioner!!! I feel a very unhappy pensioner at the moment.😪😪. Thanks for the sauerkraut tip. I am taking ACV.Didn't realise how much the gut plays in our health and wellbeing. Take care
Someone said to me that the best sauerkraut for probiotics is fresh sauerkraut. A good health food shop will have fresk sauerkraut in their fridge/chiller unit.
Sauerkraut that has been pasteurised is unlikely to have probiotics as they will have been killed by pasteurisation process.
Fresh sauerkraut is very pungent so keep it inside a sealed container and maybe think about making your own.
There are lots of gut health books on the market.
There's also kimchi, a traditional Korean dish of spicy fermented cabbage.
Best advice I can give you is everything cooked from scratch,no eating after 6pm ,no dairy ,no gluten sounds boring but if you compare it to the pain and discomfort of gut pain its well worth the boring lol.I’m not a happy pensioner right now either,I’m insulting the name lol,it does all get on top of us sometimes doesent it but life goes on and we just have to suck this up and enjoy it while we can ,take care too xx
I don't know if this will help your stomach issues, but when I'm having trouble with my stomach I swallow a teaspoon of manuka honey first thing in the morning, on an empty stomach. I do this for a few days and it seems to straighten things out. Don't heat up the honey such as putting it in tea. It has to be taken straight out of the jar.
Are you taking any PPI's? lime omeprazole?
Hi vitali-ep, no I am not on PPIs. Gp did prescribe them but I didn't take them. I have had them in the past and they made me feel awful. I am going to try the Fodmap diet and am having lime juice with supper.It's been great to have everyone's input. And to know I am not on my own.
Thanks for taking time to reply to me
I follow the AIP (autoimmune protocol). It has helped a lot. I highly recommend the AIP lecture series with Sarah Ballantyne. Also, in the US we have functional medicine practitioners who know a lot more about gut health and will run tests that regular doctors won't run, to address problems like SIBO, H. Pylori infection, and enzyme deficiency.
I know that I could not function with 10 weeks between jabs. I have to get one every day to feel mostly "normal." I don't even talk to my doctors about it anymore; I just do it myself. It is exhausting to fight an uphill battle with doctors when you're sick! I wish you well. ❤️
Thanks lynxis, no I am not functioning 🙄🙄. I am considering seeing a functional practitioner, however all consultations are on line at the moment. I feel very sad that my Gp doesn't look at the whole picture but from reading posts 9n the forum it is usual. As you say when you feel rotten you haven't the strength to fight your corner.I will take a look at the AIP protocol, I don't know anything about it.
Thanks so much for your help.
Hi,
Have you tried kefir, a fermented milk drink?
It's possible to get non dairy versions as well if you're on a dairy free diet.
Kefir is rich in probiotics.
There's also kombucha, a fermented tea drink.
You should be able to find these in a health food shop
Some people make their own.
"I have had bloods done 3 weeks ago and was told they were OK."
I learnt to always check my blood test results myself.
I was told for years that my results were okay but when I got copies of my test results I found out of range and borderline results on several occasions.
Maybe it's worth checking your results yourself.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
Support
Might be worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Some forum members have been supported by the person who runs the website B12 Deficiency Info.
B12 Deficiency Info website
"didn't have loading doses"
Why don't you write a brief, polite letter to GP asking the GP surgery to give you loading injections and mention that they weren't done at the start of your treatment.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
The link above has letter templates that help people to plan what they want to say to GP.
May be worth including the information from BNF link below which outlines how many loading injections should be given.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
For patients with B12 deficiency without neurological symptoms, it's 6 loading injections over 2 weeks at start of treatment.
For patients with B12 deficiency WITH neurological symptoms, it's a loading injection every other day for as long as symptoms continue to improve
If you have neuro symptoms, you could also point out in any letter that BNF suggests that patients with B12 deficiency with neuro symptoms should get maintenance injections every 2 months ( which is more often than every 10 weeks).
You could ask GP to look in their BNF book to see what is recommended for B12 deficiency.
They need to look in Chapter 9 Section 1.2
Have you tried other GPs in the practice to see if they will give you loading injections and/or more frequent maintenance injections?
Seeing another GP is no guarantee of better treatment and can sometimes lead to worse treatment.
Have you thought about moving to another GP surgery?
nhs.uk/common-health-questi...
Again, this is no guarantee of better treatment.
Some people on the forum choose to treat themselves if they can't manage on the treatment their doctor prescribes.
Thank sleepybunny, I wasn't given loading doses as Gp said 167 was borderline. I haven't tried kefir but I make my own yoghurt which I have most days. Gp is good but seems to have fixed ideas on b12 deficiency. I feel a bit better at the moment so hope I will be up for asking questions and moving forward.I don't do Internet banking or PayPal so am unable to order my own supply of b12.
Thanks so much for all the information and support. Take care
Hi
I was feeling awful, terrible nausea, bloating and abdominal discomfort.
What helped me was contacting Tracy Whitty b12deficency.org. Following her advice I went gluten free, started taking Methylfolate and Magnesium. That really worked for me.
No more nausea.
I also took Symprove ( prebiotic/probiotic supplement) for 3 months as recommended by someone on the forum.
Whilst continuing to self administer B12 injections si every other day.
I got to a point where I just took control of my own health.
Good Luck
Thanks Trtchikoff. I find if I have a bigger meal which contains carbs it can set my stomach off!! I am currently taking Biokult. But will consider symprove and definitely trying gluten free. Thanks again, take care
Try cutting out gluten in your diet I believe that people with PA can become intolerant to gluten that may also be why you're so tired
The gluten issue keepe being flagged up😒😒 I am going to try it definitely. Thank you.
Hi,
Before you cut out gluten, it might be worth making sure you have been tested for coeliac disease.
Once gluten has been cut out of a diet it can be difficult to get a diagnosis of coeliac disease although NICE guidelines on coeliac disease suggest that anyone with suspected coeliac disease who has already cut out gluten should be referred to a gastro enterologist.
The two first line tests recommended for diagnosing coeliac disease are
1) tTG IgA test which checks for antibodies to gluten
2) Total IgA test which checks which patients have IgA deficiency.
A person with coeliac disease can get a negative result in tTG IgA test if
1) they have IgA deficiency.
IgA is an immunoglobulin.
2) they were not eating enough gluten prior to blood being taken for tests.
If you were tested for coeliac disease in the past and got a negative result...
did your GP suggest you eat plenty of gluten in more than one meal per day for several weeks prior to blood being tested?
did you have a Total IgA test?
Have you seen a gastro enterologist?
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
My tTG IgA coeliac test was negative but I did not get a Total IgA test at same time so I still wonder if coeliac disease is a possibility for me.
I cut out gluten and my gut issues improved.
What amazed me is how many foods unexpectedly have gluten in them so if you decide to cut it out, check labels/ingredients carefully.
Thanks sleepybunny. Yes I was tested for coeliac but wasn't asked to follow the increased gluten intake protocol. I am going to try cutting gluten out, I will try anything to feel better. I am gearing up for my appointment with Gp 😟😟
You are all so helpful and supportive 👍🙏🙏
Perhaps it would be worth asking GP to test you for coeliac again ?
You could ask for both tests
tTG IgA and Total IgA
and mention that you were not asked to eat plenty of gluten for several weeks prior to blood being taken last time.
You could refer your GP to the NICE guidelines on coeliac disease especially sections
1.1.3
1.1.4
1.1.5
which make it clear that GP should ask patient to ensure they are eating plenty of gluten for at least 6 weeks before blood is tested.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
May be useful to speak to Coeliac UK, they have a helpline.
coeliac.org.uk/glossary/hel...
As far as I know they cannot give medical advice but they might be able to pass on useful info.
When a patient starts to be assertive and asks questions, some GPs cannot cope very well. You may find that patient/GP relationship becomes strained.
Weigh up the risk of possibly upsetting GP with the consequences for you if you don't get appropriate care and treatment.
Thanks, it is a balancing act isn't it😒 my gp is good but fixed on b12 treatment. I wouldn't wish it on anyone but I wonder how they would feel if they or someone in their family experienced it.
There are some doctors out there who want to know more about PA and B12 deficiency but not enough. See blog post below.
Given Pernicious Anaemia diagnosis today
Should I increase frequency of b12 jabs?
latest knock back from GP
