Pernicious Anaemia Society
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Advice needed

Hi everyone,

I'm new to the forum and would love some advice as I really am getting desperate with not getting any answers or support from doctors!

At the start of last year, I became suddenly ill. At my request, a stool specimen was tested for parasite eggs and I was told I had Giant Roundworm. I took the treatment, and my symptoms changed but I got more and more unwell. I've seen a gastroenterologist who carried out various blood tests and I'm waiting for the results of a biopsy taken during an endoscopy, but he thinks it will find nothing and that I'm depressed(???). I've also seen a rheumatologist, who dismissed me as soon as he saw me and also said I'm depressed(??!!?). He did some basic blood tests but that's it.

Anyway, I know this seems unrelated to b12 but back in November I had my serum b12 tested and it came up as 163 (ng/L). My ferritin was ok (I think?) at 96 (ng/ml) and my serum folate was 2.7 (ng/ml). My vitamin D was low at 32 and I had been outside a lot during the summer. My GP prescribed me 3 months of folic acid pills, but said my b12 wasn't low enough for the NHS to treat and to get a general supplement from a health store. Same with the vitamin D.

So, here I am now with worsening symptoms which are largely neurological. My most concerning symptoms are:

Extreme, sudden dizziness (sometimes improves briefly after eating)

Nerve pain (bodywide, on and off, most recently on scalp), buzzing in legs, burning sensations, numbness, tingling

Muscle twitching, small jerks, muscle tension and pain, easily injured muscles

Chest pain (heart has been checked), palpitations, racing heartbeat

Acid reflux, seem to have difficulty breaking down foods (present in stool) and recently difficulty swallowing (food gets stuck in left side of throat)

Visual disturbances - sudden onset of really bad floaters, eyes sometimes have trouble focussing together, sometimes vision is blurred.

Feeling shaky, out of breath, just weak and wobbly in general and fatigued

Sudden appearance of (what appear to be) varicose veins and broken veins, vein pain, really visible veins

A weird "headache" that doesn't hurt so much as feel that in a specific place (there's a ridge there) it feels as if someone is pushing from both the inside and outside

Anxiety (I'm a naturally anxious person, and not knowing what's wrong and if it's serious/permanent definitely adds to that, but I feel as if some is coming directly from whatever is causing me to be so unwell)

I'm sure there are things I've forgotten, but this is such a long post anyway (I'm sorry!) that I'll leave it at that.

Basically, does anyone have any ideas on what I should do next? My GP is clueless, but usually will carry out tests if I ask for them. I'd ideally like to be referred to a neurologist but I'm not sure she'll be able to currently as I'm awaiting an appointment with infectious diseases specialists (as this started after infection).

Thanks so much for reading and any suggestions :)

6 Replies
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Hi

Even without your list of symptoms some of which bear resemblance to B12 deficiency, your level of B12 and folate and vit D are too low with neurological symptoms your doctor should be treating with B12 however as most of us find this is far from simple if ever. How much do you know about B12 deficiency my suggestion would be to get as much information from this great site as you can then be armed with the information you need to take along the GP with the latest Guidance from NICE how you should be treated for neurological symptoms.

If you still get no joy then come back to the site and the good people can advise further.

Mark

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As holehead suggests Chazbadaz have a look at the N.I.C.E guidelines below. Click on the link and then on "Scenario: Management" and scroll down to "Treatment for B12 Deficiency". This tell your "clueless" GP how to treat you, his patient.

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

Reply

Hi Chazbadaz,

your B12 and folate are very low and with such neurological symptoms you should be having weekly injections.My B12 last June was 164 and my doctor would have had me on 3 monthly injections but after seeing a neurologist he instructed 1 weekly. I also have been self injecting a further 1 or 2 injections weekly since last November. I have many of your symptoms and also feet feeling like they are filled with cotton wool and tight banding round ankles. After injections my symptoms ease a little but within a few days get worse if I don't have injection. Many of my symptoms have improved though. Less frequent palpitations, memory improved, more energy. The fluid behind my eye which changed density has left me with thick wavy lines and floaters has remained with same. I was undiagnosed for a number of years probably. I think with your b12 so low if you do not get the right treatment I cannot see how you will improve. And as for doctor thinking you are depressed, they all seem to put that label on. The nerves are damaged, not depressed. As suggested go back to your GP armed with latest guidelines from NICE. I wish you well.

Reply

Hi,

"My GP prescribed me 3 months of folic acid pills, but said my b12 wasn't low enough for the NHS to treat"

I have read that it is important to make sure that any co-existing b12 deficiency is treated if a person is on folate treatment. See Management section of next link for more info on this. it's possible that your GP may not be aware of this information.

patient.info/doctor/folate-...

If you're in UK, I'd suggest reading whole BSH Cobalamin and Folate Guidelines.

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

Some of my GPs were unaware of this document so I gave them a copy.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart above makes it clear that in UK, people who are symptomatic should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether B12 is low or within range.

"said my b12 wasn't low enough for the NHS to treat and to get a general supplement from a health store"

The problem with supplementing before a diagnosis is that it can make it very difficult to get a diagnosis.

The GPs comment above makes me think they may not be aware of the following documents

1) NEQAS B12 Alert

Emphasises the importance of not delaying treatment in patients symptomatic for B12 deficiency.

Link to NEQAS statement in this link below.

b12deficiency.info/b12-writ...

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises the need to treat people who are symptomatic for B12 deficiency even if there is no obvious deficiency in blood tests, in order to prevent neuro damage.

3) BSH Cobalamin and Folate Guidelines

UK B12 document that outlines treatment and diagnosis of B12 deficiency. My experience has been that some UK GPs are unaware of this document. I gave my GPs a copy.

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 IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether B12 is low or within range.

IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if test result is negative (called Antibody Negative Pernicious Anaemia).

B12 blood tests

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Other B12 info

Some may not apply if you're not in UK

1) Pinned posts on this forum. I found fbirder 's summary of b12 documents useful. Link to summary in third pinned post.

2) BNF British National Formulary Chapter 9 Section 1.2

BNF is a slim book that outlines treatment for various conditions. A UK GP is very likely to have a copy on desk or bookshelf. Can get own copy from a good bookshop or popular internet retailer.

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

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

Info on Uk b12 treatment is also in BSH Cobalamin and Folate Guidelines

3) B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper, Martyn Hooper is the chair of the PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave my Gps a copy of this book.

"Living with Pernicious Anaemia and Vitamin B12 deficiency" by Martyn Hooper.

"Could It Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

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

4) PAS website

Helpful and sympathetic in my opinion but busy, so may not have resources to help those who are not members.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Martyn Hooper's blog

martynhooper.com/

5) B12 Deficiency Info website

b12deficiency.info/

Lots of b12 info and an interesting blog.

Lists of B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for B12 Deficiency

I think having parasites is mentioned in at least one of the links.

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Link about what to do next if b12 deficiency is suspected

b12deficiency.info/what-to-...

Unhappy with treatment?

Link about writing to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic with an in range b12 result.

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

A UK charity that offers free second opinions on medical diagnoses and treatment

hdapatientcaretrust.com/

Access to medical records

I get copies of all my blood test results . I learnt to do this after being told everything was fine and then finding abnormal and borderline results on copies. Some people on forum get a full set of medical records. Some Uk GP surgeries have online access to a summary record but it is a summary and may not have all the info a person requires. it can be very illuminating to see what has been written in the past.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

Parasitology

There is a British Society For Parasitology who may be able to tell you more about Giant Roundworm and consequences of infection.

The London School of Hygiene and Tropical Medicine might also be a source of info.

I am not medically trained, just a person who has struggled to get a diagnosis.

Some forum members find that they have to educate both themselves and their GPs about B12 deficiency.

2 likes
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Thank you so much everyone for the replies - I have a lot of reading to do!

Yes, I am in the UK :)

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Is it worth paying for the Active b12 test for further insight? I was considering it seeing as I'll be in London next month to see the infectious diseases specialist.

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