Hand tremor and b12

[Backchat57]

My daughter 21 developed a hand tremor in both hands about a year ago almost overnight. One hand is much more pronounced than the other. She has seen a neurologist who diagnosed as benign tremor . She also has severe neck and back pain and some digestive issues. Her blood tests are all ‘normal’ including serum B12 & folate apart from pareital cell antibodies which have on two consecutive tests showed as strong positive. The GP has finally requested an MRI of her neck and shoulders as this has not been done before despite being diagnosed as hypermobile. Maybe I’m grasping at straws thinking it may be B12 deficiency or PA because at least that could be treated - any thoughts anyone?

[clivealive Forum Support]

Hi Backchat57 do you know how "NORMAL" (I hate that word) your daughter's B12 and Folate results were?

I'm not medically trained but there are others on here who will be able to give you good advice.

I wish you both well.

[Backchat57 in reply to clivealive]

Hello. Yes I agree ‘normal ‘ can be so ambiguous. These were the results

Serum vit B12. 614ng/L 190.0-910.00 ng/L

Serum Folate >24.0 ng/mL. 3.30-99999.0 ng/mL

These were the only B12 tests performed

[clivealive Forum Support in reply to Backchat57]

The N.I.C.E. guidelines on the treatment of B12 and Folate deficiency say:

"Not checking for gastric anti-parietal cell antibodies

Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014]."

Click on the link, then on "Scenario: Management" and scroll down.

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

As to your daughter's "pareital cell antibodies which have on two consecutive tests showed as strong positive" according to South Tees Hospitals NHS "The antibodies do appear many years before the onset of pernicious anaemia and therefore patients with high elevated levels should be followed up".

For the full article click on the below:

southtees.nhs.uk/services/p...

Although your daughter's serum B12 levels are "normal" it only measures what is "swirling around" in the blood and not what is at cell level.

You could ask your daughter's doctor to do an MMA test.

Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

I hope you find some answers.

[Backchat57 in reply to clivealive]

Thank you so much really really helpful

[Sleepybunny]

Hi,

Some B12 links that may be of interest. I am not medically trained.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BMJ article and BSH flowchart above make it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start b12 treatment even if B12 normal range.

BNF

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

NICE CKS

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

What to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

My personal experience was being very symptomatic for b12 deficiency with results that were between 300 - 500 ng/L (without any B12 supplementation) so difficult to get anyone to take me seriously.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic for B12 deficiency with an in range B12 result.

It also mentions Functional B12 Deficiency, where there is plenty of b12 in the blood but it's not getting into the cells.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

More B12 info in pinned posts on this forum.

[wedgewood in reply to Sleepybunny]

Thank goodness that you are not medically trained . Would not be able to get all that useful information from a medically trained person !

[Backchat57 in reply to Sleepybunny]

Thank you so much for all this advice from everyone it is SO helpful - now where to start !

[ChitN]

One option is to try b12 injections to see if it improves her symptoms. I had the same symptoms as your daughter. I had a serum b12 of 400 after already taking sublinguals

[Backchat57 in reply to ChitN]

Hello! And what happened did you inject and did the tremor get better ?

[ChitN in reply to Backchat57]

It’s a slow progression. I had many other neurological symptoms that were bothering me far more. Everything is slowly improving, it’s been only 8 weeks of injects for me. It takes time so patience is key.

[Backchat57]

Did you get the injections from your GP ?

[ChitN in reply to Backchat57]

I got the first injection through my GP but have been going through a naturopath ever since. I live in Canada and here Naturopaths can administer all kinds of vitamin shots, including B12

[Sleepybunny]

Hi,

"pareital cell antibodies which have on two consecutive tests showed as strong positive"

"and some digestive issues"

Are there any blood relatives with PA or B12 deficiency? PA can run in families (see Risk Factors links), If there is PA in the family, then I would have thought that a positive PCA test plus a family history of PA would raise alarm bells. Having auto-immune conditions in family may increase chances of developing other auto-immune conditions eg PA.

In UK B12 guidelines, positive PCA test is not considered diagnostic for PA because although positive PCA occurs in about 80% of PA sufferers, it can also occur in people with other health conditions.

Flowchart link in above post mentions that it is possible to have Antibody Negative PA (PA where IFA test result is negative or normal range). Some doctors may not be aware that it is possible to have Antibody Negative PA.

I think it's unlikely that GP would consider an IFA test with B12 results of over 600 although if she's highly symptomatic for B12 deficiency (see symptoms lists in post above) or there's a strong family history of PA it might be possible to persuade them. Might be worth mentioning BSH Cobalamin guidelines say 80% PA sufferers have positive PCA.

It's possible to get IFA (Intrinsic Factor Antibody) test done privately in UK. Results of IFA test may not be reliable if performed close to B12 injection.

PAS (contact details in above post) might be able to pass on info about possibility of PA when B12 levels are within range.

Has she had a ferritin test or other iron tests recently?

labtestsonline.org.uk/tests...

labtestsonline.org.uk/tests...

UK guidelines on Coeliac Disease recommend anyone with unexplained iron deficiency, B12 deficiency or folate deficiency should have tests for Coeliac disease.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection

Has she ever had a test for H Pylori?

patient.info/health/dyspeps...

Gastro-enterologist

With gut issues, has she been referred to a gastrointestinal specialist? A gastroscopy might pick up signs of gastritis due to PA, H Pylori, Coeliac disease etc.

Serum vit B12. 614ng/L 190.0-910.00 ng/L

Does she have other results for B12 from earlier tests? Sometimes it's possible to see a decline in B12 levels over a period of years which may be indicative of the start of a problem with B12.

Serum Folate >24.0 ng/mL. 3.30-99999.0 ng/mL

The folate reference range looks unusual to me, is it correct?

Medical records/test results

Some people on forum find it helpful to get a complete set of medical records. I always get copies of all my blood test results after being told everything was normal and then finding abnormal results on the copies.

UK GP surgeries may have online access to a summary record but this is just a summary and may not have all the info wanted eg not sure if it would include letters between specialists and doctors. Helpful in some cases to get access to/copies of paper files. Can be very illuminating to see what GPs have written in past. More difficult to get hold of hospital records, may involve form filling and visit to hospital records office.

My personal opinion is that quite a few with B12 deficiency get written off as neurotic, psychosomatic , hypochondriac or depressive. it pays to do some B12 homework in my opinion, in case doctors have not.

"despite being diagnosed as hypermobile"

Some genetic causes of hypermobility can also lead to digestive problems. Have genetic reasons been ruled out?

Vitamin D

Has she had a Vitamin D test recently? I've read that Vit D deficiency or insufficiency is quite common in UK especially in winter months.

nhs.uk/conditions/vitamins-...

patient.info/health/osteopo...

I am not medically trained.

I wish you luck in finding answers.

[Backchat57]

Gosh lots to look into thank you!

Apart from FBC and anti body tests don’t think she had a number of the other tests. Will encourage her to push for these although at 21 they don’t always have the confidence to and think ‘Dr always knows best ‘ I have had RA since the age of 37 so realise there could be genetic implications and really would like to help her get to the bottom of all this.

[janepurser in reply to Backchat57]

Hello Backchat 57,

Two years ago one of my siblings told me that she and my other siblings had noticed I'd had a head tremor for about 18 months/two years. I wasn't aware of this and asked husband and friends: turns out everyone but me had noticed. So I had had a head tremor for about four years by then. GP reckoned it was essential tremor (benign) and nothing to worry about.

Roll on another year and I go to same GP with a host of symptoms (30+) that I'd not connected until I sat down and wrote them all down, but the main two symptoms that alerted me to something not quite right were copious hair loss and utter exhaustion meaning I couldn't be bothered to walk along the beach. Turns out my B12 levels were 110.

In the UK B12 injections are given every three months after a loading dose over two weeks. I now self inject every other day simply because my GP did not agree to doing this despite national guidelines and I've been doing this for two months now. In the last month my siblings have told me my head no longer has a tremor.

I tell you this because I'd obviously developed neurological symptoms over four years ago and my B12 levels would have been much higher than they were when I eventually presented with all the other symptoms I'd developed over the years. I suggest your daughter and you keep a diary of symptoms you notice. The individual affected doesn't often realise things are going downhill but when I re-read my diaries over the last 6 years I'm saying "I'm exhausted and I don't know why" with increasing frequency.

I wish your daughter well and keep diaries as they'll be invaluable for her.

Best wishes.

Jane

[Sleepybunny]

Hi,

I like janepurser 's idea of a symptoms diary. Sometimes getting a diagnosis of B12 deficiency including PA can be a matter of building up evidence over a period of time.

"Apart from FBC and anti body tests"

Has she had an Intrinsic factor Antibody test? Does she know the result if she had an IFA test?

If she is highly symptomatic for B12 deficiency (See Symptoms lists in my first post) then may be worth including info about potential neuro consequences of b12 deficiency and functional b12 deficiency in next discussion with/letter to doctors. It might concentrate minds of GPs as some may be unaware of neuro consequences of untreated or under treated B12 deficiency.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Functional B12 deficiency

nhs.uk/conditions/vitamin-b...

b12deficiency.info/b12-writ...

I prefer to put info in brief letters as my understanding is that letters to GPs in UK, are filed with medical notes so are evidence of issues being raised. Letters are less likely to be ignored, in my opinion, than info passed on by discussion or on photocopies of articles/documents handed over during appts. I always keep copies of letters I write.

A word of warning....some GPs may find it hard to cope with assertive patients and GP/patient relationship may be affected. One of my former GPs was irritated by letters.

Does your daughter have anyone supportive who can attend appts with her? If b12 is a potential issue, even better if person has read up about it. My feeling is that some GPs are kinder if another person is present. Can be helpful to have a witness especially if GP is sometimes unhelpful.

[toph]

Get your daughters ACTIVE B12 level tested.

The NHS will not do it as they don't understand it.

You can get the nutris test by VIAPATH phone

Nutristasis Unit at St Thomas ' HOSPITAL

02071886815

Search on the internet and you will get their website £40 and get your B12 active test done and you'll have to get a registered haematologist to take the Bloods I got mine done for free by my GP try and stay off the B12 injections for a week or as long as you possible can then take the Bloods send the Pack back by prepaid post. A person at the end of the phone will speak you through everything, 08001214433very easy to do

[Backchat57]

Thank you