Iron levels

[LauraJF]

After 10 years of being diagnosed you would have thought it would be sorted but I had a blood test last week and have been informed by the Dr that by B12 levels are too high and iron/ferratin too low I need to stop having my injections every 9 weeks and go back to 12 weeks. This was changed to 9 weeks 2 years ago by a different Dr due to my tongue being extremely sore. However now I seem to be having other issues, upset stomach, not sleeping, pins and needles, tiredness, really forgetful, mood swings and blurry eyes. Dr has prescribed iron but last time this gave me bad headaches and constipation. I don't eat red meat but make spinach/fruit smoothies everyday, I eat healthy but am not sure what else to do and feel it is effecting my everyday life. I snap at people and lose my temper so quickly - everything seems such a struggle. I really dont want to go back to injections every 12 wks but can you have too much b12?

[fbirder]

No, you can't have too much B12. Check the pinned posts for the info on mega-high doses of B12 from Stichting B12 Tekort.

If you look at the Amazon reviews of high-dose B12 tablets/etc. then you'll see that many people consume very large amounts as a lifestyle drug, because they've read on the Interwebs how it can help boost energy and help the brain work better.

Many of these people will have no deficiency and no absorption problems. So their blood levels must be sky-high all the time. If that caused any problems then we'd probably have noticed the results by now.

I've got some more info somewhere. I'll look for it later.

As for the iron. The doctor almost certainly prescribed iron sulfate. Buy some 'Gentle Iron' from Amazon. It is more easily absorbed and does cause too many gut problems.

[fbirder in reply to fbirder]

Found that extra info...

The Medscape section on Pernicious Anaemia emedicine.medscape.com/arti... includes the following...

An alternative regimen involves weekly injections of 1000 µg of vitamin B12 for 5-6 weeks, followed by monthly injections.

Cobalamin deficiency–related neurological impairment can vary in clinical An alternative regimen involves weekly injections of 1000 µg of vitamin B12 for 5-6 weeks, followed by monthly injections.

Cobalamin deficiency–related neurological impairment can vary in clinical presentation, including acute combined system degeneration, peripheral neuropathy, and psychosis. These neuropathies should be treated more aggressively., including acute combined system degeneration, peripheral neuropathy, and psychosis. These neuropathies should be treated more aggressively.

Note that this flies in the face of the NHS recommendations of every 8 to 12 weeks. Medscape is saying every 4 weeks or, with peripheral neuropathy and other neurological symptoms, even more often.

[Foggyme Administrator]

Hi LauraJF. I agree with fbirder . Your high serum B12 levels are purely a result of having B12 injections. And no such thing as too much B12.

Once treatment has commenced, all the guidelines state that not further testing of serum B12 levels is required (unless looking for low levels)..

And serum B12 levels are no indicator as to the effectiveness of treatment - the only way to assess this Is by the relief of symptoms...if you still have symptoms, or your symptoms return before your next injection then you need more frequent injections of B12.

Many GP's do not understand this.

In addition, your have neurological symtpoms so,your should be on the neurological regieme of injections, that is (after the loading doses) an injection every other day u till no further improvement. Many GP's have not heard of this regime.

I'm going to post a couple of links about serum B12 testing that might help you with your GP...highlight the bits relevant to your case and then maybe go along and present this evidence to your GP to support a request for more frequent injections.

I also have more links that will help with B12 things in general, and in particular, information about the treatment of B12 deficency when neurological symptoms are present - bit can't get those links or I'll lose is reply (will come back and post additional links in a new reply).

It's also worth noting that if your neurological symptoms persist, your GP should refere you to a neurologist for investigations to rule out other potential causes for your symptoms.

Also - has your GP checked your folate levels? B12 and folate work together so you are deficent or low in folate, the your body can't utilise B12 properly.

Please do,post again if,you have continued problems with your GP and we can advise further about this...good luck...

And here's the firs lot of links:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

👍

[Foggyme Administrator]

And some more links to information that might help:

Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

Apologies...might have given some links twice but don't have time to 'sift' them for you 🙃

👍

[Polaris]

As Foggyme has already said, very few GPs fully understand the complexities of PA/ B12 deficiency or that once b12 treatment is started, the test results are generally not reflective of how effective the treatment is and that it is the clinical condition of the patient that matters.

This UK BMJ research document with useful summary may help convince - supported by many research papers.

See bottom of page 4 under 'How is Response to treatment assessed' :

cmim.org/pdf2014/funcion.ph...

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

stichtingb12tekort.nl/weten...

"Conclusion: A vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover."

[Polaris]

PS I've been undecided about smoothies since scientists on Michael Mosely's TV programme found that only a small percentage of nutrients were absorbed by taking food this way 🤔 😟

You probably also know that Vitamin C helps absorb iron from food.

[Galixie]

Since you've been on iron tablets before and they didn't agree with you, you may want to ask your doctor if you could have an iron infusion instead. That would at least let you avoid the stomach issues/constipation. I'm not sure whether it would be better or worse for the headaches though.