Advice moving forward?

[Dan444]

So I recently had blood tests that showed low b12, iron and vit D.

Was prescribed tablets for the iron and vit D.

And put on a course of B12 loading doses. 6 injections over 2 weeks.

it's now been 2 weeks after the last b12 injection and none of my symptoms have improved.

When I talked to the gp, he sent me for more blood tests.

He says that my tests have come back as normal for B12 now, Iron and vit D within range. And intrinsic factor negative.

so I have to wait until my next scheduled b12 injection in 2.5 Months.

[Narwhal10]

Hi Dan444,

Just a quick reply for the moment. PA/B12D is poorly understood it is definitely worth joining the PA Society to obtain the proper information. Read Sleepybunny’s informative posts.

Error 1 - retesting B12 levels after treatment. The levels will be high, it does not indicate symptoms and British Haematological Society give advice on this.

1) Keep a symptoms diary or tracker - yours are yours. Between us all we have a whole catalogue and other diseases into the mix.

2) Get your blood results in hard copy.

3) Any family history of Autoimmune Diseases. Please be aware of the probable misdiagnoses. So, members report grandparents having Alzheimer’s Disease (it can be a possible misdiagnosis for PA/B12D.)

4) The Intrinsic Factor test is only 50 % reliable.

5) Being moved onto 3 monthly injections is common practice. I do not know where you are in the world. You can try and haggle with your GP for more injections. Entirely up to you. I do not know how poorly you are. Some people can still work whilst others are bed-ridden. Lots of us on here do ‘what is necessary’. This is a code for either going private or wedgewood and others point us in the right direction.

6) Do you have any gastro symptoms as I am just querying why iron and vitamin D are low too. So, is it malabsorption ? Any heartburn ? Tested for H.pylori, coeliac, Crohn’s disease, low stomach acid, gastritis ? So, do you need referral to a gastroenterologist - is my line of thinking. 🧐 If so, food diary useful and never be afraid to describe your stools. Google Bristol Stool Chart. Used in Health Care.

👍🏻

[Technoid]

When you say "none of my symptoms have improved", were they affected by the injections at all? How long have you had B12 deficiency symptoms?

[Orchard33]

A GP saying that a blood number is within range is now a red flag for me. I now know that ranges are often questionable in relation to the whole clinical picture. Ensure you have print-outs of your bloods. Comparing over time is very useful. I've just created an excel spreadsheet so I can compare at a glance. And what is within range, "a normal result, no action required" (the NICE mantra) to a GP may not be so to a specialist who may well interpret in a more nuanced and individualised way.

[Dan444]

thanks for the replies.

I'm in uk.

Symptoms including tiredness, brain fog, muscle aches, pins and needles, headaches, mouth ulcers, hair loss.

I feel like I have had some of these symptoms for quite a long time and just didn't realise the importance. My original b12 result was <120.

After the loading doses I felt less tired, brain fog. But then within a week it all came back, the other symptoms never went away.

GP ran liver, thyroid, diabetes tests, and ruled all out.

No family history that I am aware of, although I will dig and see if I can find out anything.

As far as gastro symptoms go, small amount of gas/bloating. But nothing else. Which is why GP went with Intrinsic factor test.

He says he will run more blood tests at 3 months, but before my next b12 injection.

[Technoid in reply to Dan444]

"After the loading doses I felt less tired, brain fog. But then within a week it all came back,"

That was quite a low B12 result indeed.

It's become somewhat of a regular refrain here but it seems to be true here again. You'll need more frequent B12 injections and should only reduce the frequency cautiously when symptoms have resolved. Many GP's are convinced once they raise B12 to normal levels, that the effects of the deficiency should instantly resolve. This is rarely the case. I advise to follow best treatment practice from experts in the treatment of B12 deficiency, not bumbling GP's.

I would continue on twice a week but some members find they need even more frequent treatment so you will need to judge what works for you. Make sure your diet and supplementation are in good shape to support your recovery (tips in my profile). Hopefully your GP will agree to maintaining loading dose frequency but frequently they do not in which case you must decide whether you will leave your health in their (ignorant) hands or follow best practice for the best chance of a complete recovery.

[Dan444 in reply to Technoid]

So I have been to see my GP, we started off rough with him implying it was all in my head and offering anti depressants. I declined.

I proceeded to talk him through the nice guidelines and other info from here. Which is when he admitted he doesn't know much about b12 deficiency.

So he has referred me to a neurologist. No idea of a time line, but at least we seem to be moving in a better direction.

[Technoid in reply to Dan444]

"we started off rough with him implying it was all in my head and offering anti depressants"

I got stuck at that point with my GP, but its great you got a referral at least. At the end of my treatment I met with the head of the B12 specialist treatment clinic here. I told him the whole story of what happened and at the end he shook my hand and said, in so many words, "you really know your stuff".

Validation from an actual expert was a long time coming but it was something nice in the end after all the continuous gaslighting from GP's. Many GP's seem to be stuck near the early peak of ignorance/arrogance on the B12 dunning-kruger learning curve.

[Oneash in reply to Dan444]

One theory is it takes as long to mend as you have been deficient. Vitamin B12 does a lot of things in the body :

Blood - you have been deprived of oxygen in every cell.

Mitochondria - your energy system in every cell has not been sparking.

Nerve sheath - the protection round your nervous system has deteriorated, pins and needles are the obvious symptom, so your body's messages aren't getting around.

Healing - without B12 the DNA strand ends, telomeres, get more frazzled faster. You actually age faster.

Did your Doctor tell you to take folic acid? B12 and foliate work hand in hand, especially to build blood cells. I eat plenty of leafy greens, but have realised a supplement makes a difference. Caveat, folic acid can mask the B12 deficiency in blood tests, and you don't want to be taking lots of it if you aren't getting enough B12, as it can make the nerve damage worse.

Vitamin D in a good dose helps with inflammation too.

Your Doctor is following the rules set by NICE which have been under review. The blood test you have to wait for is simply to see if you have had some bodily response. Doctors don't actually just look at you any more.

Ask your Doctor if they are aware of that review. Ask your Doctor to explain how B12 is recycled in the body. ( A) through Gall bladder and bile). Ask your Doctor to explain how Pernicious Anemia affects the ileum. (A) you stop absorbing it there, so your enterohepatic circulation of B12 is disrupted.)

If you get extra B12 in the meantime, don't tell your Doctor, it just delays their doings. Do get yourself set up to DIY.

As you mend and your body goes "wey hay! I can fix this bit at last!" you go through 'reversing out' a roller coaster ride of feeling worse, then feeling better. You can feel the junk being cleared from every organ.

Do eat liver, clams, meat, oily fish etc. All the things B12 is high in just in case some can get through and because all the other nutrients work with it.

Welcome to the club!

[Madman070578]

Dan, I've had all the same symptoms as you and also nervy symptoms and severe pins and needles in my genitals and difficulty swallowing.

I had the same treatment from my GP and went down the route of seeing a private consultant who has suggested EOD B12 injections, Iron/Vitamin D and Folate tablets.

I'm only 11 doses in though.

[B12life]

Dan444

Dido!! Texhniod is so right!

Here's my common canned response for people new to this b12 deficiency. We all had the same problem where GPs thought that only a few injections were needed or that testing can be done after the first injection which it can't!

Once you start injections, the b12 stays in the blood stream thus the test will give a false level until injections are stopped for 3 months.

but still they test and take you off injections.

Here's my answer. Read that many faces article I mention:

also, if your b12 is that low and you eat meat. That's severely low. It takes 4 years to deplete the stores and end up that low.

I was that low and was bed ridden. Forgetful. All sorts of back pain. Poe coordination. The only solution was to inject b12 daily. After 2 years I was out climbing mountains. I'll never be the same but I have come a long way! There is hope!

If left untreated the symptoms can become Permanent.

This best to get started with injections so you can heal.

As long as your liver and kidney function tests came out normal, then you cannot overdose on b12. The only time b12 is toxic is if you have an underlying, unrelated, already existing problem with the kidneys or liver but if those tests were done and they are normal then you are good. B12 won't cause a liver of kidney issue.

The healing process will be slow as in 2 years or more for me.

I highly suggest requesting frequent injections. If they won't give it to you, have them teach you how to self inject so you don't have to keep coming in for the subsequent injections.

Any time I tried to space out the injections my symptoms returned and I would have to start over again

Then don't tell them just keep doing their regiment and buy your own supplies so you can do frequent injections. It's what most of us do because b12 deficiency is so misunderstood.

This article explains all the misconceptions as well as facts.

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

The pernicious anemia society has great info as well!

pernicious-anaemia-society.org

Ask any questions on this forum.

Many here have thyroid and iron deficiency as well. Also there are iron deficiency groups on healthunlocked that are good as well.

Cheers.

Be good to yourself. It takes patience and a lot of self love.

[Dan444]

Thank you all for the advice. I have an actual face to face appointment with my gp in a weeks time. So I will take all this information to him and ask for more injections.

[Nackapan in reply to Dan444]

8Hope the consultation goes well.I had a struggle to get what I needed .

The IFAB is not s conclusive test .

A B12 injection is not a quick fix .

I was told it was.

5 weeks after loadng doses I was worse.

Back to G.p .

Eventually put back on every other day until no more improvements.

I got worse before better.

My first ever b12 level was also low.

106.

Take a multivit?

A standard one has RDA brauad spectrum I clouding 200-400mcg folic acid .

14mg iron

I never believed it would take so much b12 to start me on the road to recovery.

I'm on no othef meds and nothing else to date has been found to treat.

Let us know how it goes.

I presently have a prescription for 2 weekly b12 .

Doctors can prescribe in the patients best interests off licence.

And do fir many othef things .

Symptoms and the clinical picture