b12 checked as I have a chronic non ealing leg ulcer and periphal neurothpy

[rachie881]

after fighting to get my b12 checked I got the results today. I requested the test as I have a lot of symptoms, but some could also be my age and hormones,

serum b12 level 314 range 200-700 and serum folate 1.4 range 2.6-17.3. Dr says no further action, does this look right?

thanks, Rachie.

[fbirder]

I would definitely start taking folic acid, 400 ug a day, as you are obviously deficient.

I presume you've had a HbA1c test as your leg ulcer and PN are definite symptoms of diabetes.

[rachie881 in reply to fbirder]

Hi yes it's been checked several times as my dad us type 2. Mines have all come back clear.

[Sleepybunny]

Hi,

Are you in UK?

Are you symptomatic for B12 deficiency?

In the UK, recent emphasis has been on treating people who are symptomatic for B12 deficiency even if B12 is within normal range.

B12 Deficiency Symptoms lists

pernicious-anaemia-society.... see Checklist PDF on right of page.

b12deficiency.info/signs-an...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor antibody test and start initial b12 treatment.This applies whether b12 is low or within range.

BNF Chapter 9 section 1.2

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

Useful summary of B12 documents in third pinned post on this forum.

B12 books I found useful.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS can offer support and info about PA.

Link about what to do next if B12 deficiency is suspected.

b12deficiency.info/what-to-...

Link about writing letters to GP about B12 deficiency

Point 5 is about being symptomatic for B12 deficiency even if B12 is within normal range.

b12deficiency.info/b12-writ...

Links about blood tests

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

I have read that it is important to treat any co-existing B12 deficiency if a person is on folate treatment. See Management section in link above.

UK B12 blogs

Blog from B12 deficiency Info website

b12deficiency.info/blog/

Martyn hooper's blog about PA and B12 deficiency

martynhooper.com/

Also a lot of B12 info in pinned posts on this forum.

I am not medically trained.

[rachie881 in reply to Sleepybunny]

Lots for me to read up on, thank you. Yes I have quite a few symptoms, on that list I have 13 out of 19, I also have psoriasis

[Gambit62 Administrator]

symptoms of folate deficiency overlap with B12 deficiency as the two are used together - in general folate deficiency comes on more quickly whereas B12 develops slowly over time.

If you have a folate deficiency and it isn't dietary then that means an absorption problem, which is also likely to affect B12 -bso your levels may be dropping but this isn't going to be picked up by a single test

[Marz]

Have you had any other tests done - like thyroid ? The full Profile to include TSH - FT4 - FT3 and the anti-bodies TPO and Tg.

B12 issues often go hand in hand with thyroid with overlapping symptoms - so always good to rule out underlying conditions - especially Hashimotos the most common thyroid condition.

[rachie881 in reply to Marz]

No I have not, I will ask for that to be checked next.

[Coastwalker in reply to rachie881]

Over looked/untreated low thyroid is known to lead to diabettes. Marz above has mentioned the Thyroid Bloods needed.

Also are you taking a statin ? taking statins can cause pre diabettes/diabettes, statins can worsen diabettes if you already have diabettes.

Statins caused my Mum who already had diabettes awful leg ulcers that would not clear up, Mum's diabettes had been easy managed for years till she was put on a statin. Mum also had peripheral neuropathy, (her feet felt like walking on cardboard she use to say,) Doctor said her problem with her feet was probably down to her diabettes, but we later found it was no doubt down to B12 deficiency.

We think that taking vitamin D3 (get your vitamin D bloods checked) and vitamin A (the retinoic acid type vitamin A, which helps clear skin conditions like acne.) helped Mum's legs cleared up in 6 months, the local visiting nurse was surprised as usually it took 18 months to clear leg ulcers. NHS forget to tell us that nutrition can help us cure.

Also at the same time Mum came down off of 9 prescription drugs she no doubt shouldn't have been on.

Note - Some prescription pills can actually cause B12 deficiency.

[rachie881 in reply to Coastwalker]

no statins. glad your mum got sorted in the end.

[Coastwalker in reply to rachie881]

Good no statins rachie881 Sadly the statins led to my late Mum's kidney failure, it was too late to reverse it all and the last years of her life she was on dialysis 3 times a week.

Look into the vitamins to help cure leg ulcers. Manuka honey worked on Mum's first lot of ulcers, but took longer to heal than when she was on the vitamins. Mum got her manuka honey patches from NHS.

[Marz in reply to rachie881]

... did you manage to have all the suggested tests done ?

[rachie881]

Sorry yes I'm in the U.K.

I first developed an ulcer 6 years ago, on the scar from plates, pins and a screw in a badly broken and dislocated ankle, the screw was removed and the ulcer formed. I was treated with compression stocking and it healed. August 2016 the skin on the scar broke down and another ulcer formed. This time I can't use compression therapy due to the pain, on a scale of 1-10 I usually have 11 pain,

I'm on lots of meds and my parents Dr in France advised the check due to some of them I'm on..cocodamol.tramadol.butec pain patches. Amitriptyline. Gabapentin oramorph and lansoprazole. I've started taking ginko bilbao to help circulation, it's a prescription med in France but here it's an otc supplement.

I don't think possible P.A is the cause of the ulcer, but the nights I get 0 sleep and the poor skin, nails ECT certainly make it harder for my body to heal.

I'm not under a regular consultant as nobody thinks it's there dept, vascular say it's dermatology, they say back to orthopaedics where it started, who say no no it's vascular. So I'm alone in trying to heal, so I'm trying to address any other health problems that may exacerbate the situation.

[Foggyme Administrator in reply to rachie881]

Hi rachie881. Terrible...left to deal with this on your own...dreadful.

Has your GP thought about referring you to a tissue viability nurse specialist...they hold clinics and deal with all things to do with wound healing. Every health authority manages this provision differently so,you might have to do some research to find one in your area, then ask your GP to refer you.

Here's more information:

wounds-uk.com/pdf/content_1...

Some thoughts:

Note you're taking lanzoprasole - this does impede the absorption of vitamin B12.

You say you have psoriasis- an autoimmune condition. Autoimmune conditions tend to occur in clusters so good idea to have the IF antibody test to see if you have pernicious anaemia (another autoimmune condition). Note that 40%-60% of those with PA test negative for IF antibodies, so a negative test does not rule our PA.

B12 and folate work together so deficiency in folate means that the body can not utilise B12 properly. Addressing the folate deficiency will improve the bodies ability to process B12 but this may mean that as you use more, your B12 level may drop further.

Serum B12 levels are a poor way to assess B12 deficiency - the test is notoriously unreliable - and if you have IF antibodies the results may be raised, giving a false 'normal' result. Your GP should be assess symtpoms, it just looking at blood results.

All the guidelines state that if neurological symptoms are present and B12 deficiency is suspected, treatment with B12 injections should begin immediately to prevent a potentially irreversible neurological condition called sub-acute degeneration of the spinal cord - even if serum B12 levels appear to be in the 'normal' reference range.

Here's the UKNEQAS B12 treatment alert that advises doctors to treat immediately in these circumstances:

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

And here's a copy of the full BSH Cobalamin and Folate Deficieny treatment guidelines - these detail how B12 and folate deficiency should be diagnosed and treated:

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

And here's some information about the unreliability of serum B12 testing:

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

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

More information that might help with your GP:

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

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)

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

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

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

In short, you have peripheral neuropathy (no diabetes) so your GP should be looking for the cause...and it would be usual to refer to a neurologist for further investigations (since there are many causes of peripheral neuropathy).

Peripheral neuropathy is not usually a sign of folate deficiency, though lack of folate can mean that B12 is not getting through to the cells where it is needed, so symptoms of B12 deficiency can occur. And you do have a B12 deficiency 'risk' indicator - the lanzoprazole tablets. Plus one autoimmune condition - which may lead to another (PA).

However, because of the imperative to treat neurological symptoms immediately if B12 deficiency is suspected (as per the UKNEQAS Alert), think I'd suggest that you print the information in the links, highlight sections relevant to your case, take the information along to your GP, and use this evidence to support a further request for treatment for B12 deficiency. (Also worth printing the symptom list Sleepybunny has left a link for and tick all the symptoms you have - here it is - b12deficiency.info/signs-an... - and take this along with you).

The bottom line is that is your symtpoms are due to B12 deficiency, then they need treating immediately. B12 is safe, non-toxic, cheap...and a very effective treatment...so no harm can be done in treating you - even if only as a theraputic trial to see if it relieves your symtpoms.

Finally, so sorry that you are apparently being left to deal with this on your own. Really not good enough, is it (to put it mildly).

Good luck, let us know how you get on, and post again if you need more help or advice.

👍

[rachie881]

Tried them both, and seaweed, silver, iodine, I react badly to most, I've now developed a reaction to the adhesive in dressings.

[rachie881]

What a lovely helpful forum!

I will print off all the info, and give it to my gp.

I did see a tissue viability nurse, but she worked with the dermatology dept, when they discharged me to vascular (who moved me on again) i lost access to her.

[Foggyme Administrator in reply to rachie881]

How very joined up of the NHS 😤

Might be worth asking your GP to re-refer you to dermatology for assistance again (on the basis that your wound is still not healing and you're 'falling through the gaps').

Or perhaps your health authority runs an 'independent' wound clinic run by tissue viability nurse specialist? Some do, though usually attached to a particular specialism.

Also - in some areas, this role is taken on by a community nurse via home visits. Worth enquiring about that.

Another thought - issues with ulcers that won't heal often referred to diabetic nurse specialist - some surgeries run dedicated clinics. Although you're not a diabetic, perhaps your GP could arrange for treatment via this route. Treatment via any route would be useful!

Whatever, being left alone to deal with this wound issue is really not appropriate. So hmm... hope your GP finds a way to get you the help you need.

Good luck 👍

[Sharcott]

Just on the leg ulcer have you had your sugar levels checked ?

[rachie881 in reply to Sharcott]

yes several times, last A1c was 5.1, taken same day as FBC and the B12 bloods. I do keep an eye on it as my dads type 2 and his sister developed what was thought to be gestational diabetes but never went away after the baby was born, shes on insulin now.

[Marz in reply to rachie881]

Have you ever considered being gluten free. Gluten can cause gut inflammation and our skin - being the biggest organ - can sometimes reflect the health of our gut 😊 Do you have any gut issues ?

[potter5]

Hi Rachie, sorry you are struggling so much. As others have suggested Manuka honey can help. It is Manuka honey medical grade that is required not what you get off the shelf in supermarket. comes in little tubes, can be bought on line. A small amount applied to the ulcer and dressing applied and changed every four to six hours. The reason for changing dressing and reapplying so often is that when using a small amount the action of the honey is used up and important to stick to regular regime. I had an open sore on little toe and couldn't get it healed and using medical grade manuka honey cleared it up in just over a week. This is worth looking into. Best wishes.

[rachie881 in reply to potter5]

Hi, I've had the Manuka dressings in 10ml tubes but sadly my skin reacted badly to it.

[rachie881]

I saw the gp today, shes not interested in the info I printed out, apparently it's only a guide not a hard and fast rule. So only treatment is to buy some folic acid. It's "highly unlikely " to be B12 deficiency.

She also thinks there's no need to check my thyroid even with a family link but does think I'm more than likely to be coeliac. I have no symptoms of coeliac disease such as the tummy problems, of course some symptoms overlap B12 deficiency.

So I'm stumped now as to what to do next other than write to the practice manager and ask for it to be reviewed.

[rachie881]

Got the gp to do the intrinsic factor and thyroid with the coeliac test with the latest fbc.

All came back ok, if negative. Dr has decided to refer me to a neurologist to decide if I should take b12 or not.

She doesn't want to look for other reasons I am symptomatic of b12, or other reasons and has decided not to look into why some of my blood results are out of range, like mcv, mean haemoglobin,monocyte.

I did send a letter with the useful links but it got me nowhere.

Feeling pretty let down by the system right now, and doomed to live with a fist size hole in my leg forever.. I need my body well enough to heal ( on antibiotics again for the 10th or 11th time this year for infection) but I can't do that with all the other things making me feel ill going on.

[Marz in reply to rachie881]

Sorry to read you are still battling. Did you ask for copies of your test results ? You need to see the Thyroid results as usually they only test the TSH which is only part of the story. You also need the FT4 & FT3 and thyroid anti-bodies TPO & Tg.

You are legally entitled to have copies of YOUR blood test results so you can begin to monitor your own progress. Sometimes important things are missed ....

[rachie881 in reply to Marz]

The TSH was 3.4, they didn't run the other parts. I do get a copy of the bloods online.

It all seems so unfair that when we feel ill and like a flat battery we need to fight or answers and/or treatment.

[Marz in reply to rachie881]

TSH in a healthy person is around 2.5. Could you have tests done privately - finger prick in your home ? Results by e-mail. Cuts out unhelpful GP. Then you can have the correct tests done ....

thyroiduk.org

Click onto About Testing - in the Menu on the left. Special Offers with Medichecks on Thursdays. 😊

[rachie881]

Sorry I missed your reply Marz, if I did the test privately won't I still have to accept the G.Ps overall decision?

I tried again with her to explain how I'm feeling and how worried I am, how can my body heal my leg if there are other things going on. She wants to wait and see what the Neuro says about the neuropathy in Feb before doing anything else. Those 9 weeks feels like a lifetime wait, plus the time they reply to my gp. I'm fed up of wait and see!!

Thanks for your help x

[Marz in reply to rachie881]

Have only just found your Reply as technicallyyou had replied to yourself so I did not receive an alert 😊 Easily done !

At least with Private Testing you will have the FULL story and can then decide. What did the Neuro say in Feb ?