As I suspected...

[Hercules1969]

Went to doctor with weakness and tremors - check

Ended up on beta blockers for anxiety - check...

[RaJender9666]

may i know your symptoms??

[Hercules1969 in reply to RaJender9666]

Fatigue, tremors, aches, sinus trouble, whistling in my ears, headaches, and yes anxiety. So it's beta blockers for me then...

[RaJender9666 in reply to Hercules1969]

Do you ever feel vertigo or balancing problems.iam having from 5 months.and headaches also not going away..

[Hercules1969 in reply to RaJender9666]

Certainly sometimes.

[Hercules1969 in reply to RaJender9666]

I have had 6 loading doses after a reading of b12 192 by the way.

[RaJender9666 in reply to Hercules1969]

OK I was treated with 200 b12 5.5 months back.now my level is 650.

[Sleepybunny]

Hi,

Have you considered joining PAS (Pernicious Anaemia Society)?

Not all PAS members have a diagnosis of PA , partly due to difficulty in getting a diagnosis. There is a lot of useful info/articles on PAS website , some of the info is applicable to other causes of B12 deficiency besides PA.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

I am not medically trained.

[Hercules1969]

I have put to her some of the things I have learnt from this forum. She was not interested. I am not getting any more b12 until I have had another blood test in 2 weeks time. I have been put on beta blockers for the tremors. I shall give it a try but there has been no change today.

[Marz]

Your symptoms could also be linked to an over-active thyroid - or the auto-immune version Graves. Hashimotos - another auto-immune thyroid condition needs to be ruled out - based on your symptoms. Have you been tested correctly ?

Low B12 is a feature of Thyroid issues too ....

thyroiduk.org.uk/tuk/about_...

The above link details the signs and symptoms of an over-active thyroid.

[Hercules1969]

I raised the thyroid issue with her yesterday. She insists that is fine. If that is her interpretation I am not going to be able to change it. I can however change doctors, which I well might.

[Marz in reply to Hercules1969]

Insisting your thyroid is fine is an opinion - you really need to see the hard copy. Having been on the Thyroid Forum here on HU for over six years I read everyday of Docs saying Fine/OK/Normal - and yet when we push a little more and persuade members to obtain their results with ranges we soon see they are far from fine.

You are legally entitled to have copies of all your test results - so you can monitor your OWN health and check what has been missed - see link below from the NHS website detailing info about obtaining your own results/records....

nhs.uk/chq/pages/1309.aspx?...

Did you look at the link I posted for you in my Reply above ?

This is the problem - I expect your GP only tested the TSH - this is only a small part of the story. The TSH is a Pituitary Hormone and tells you diddly squat about how the Thyroid is performing. You also need the FT4 and FT3 tested along with Thyroid anti-bodies TPO & Tg and anti-bodies for Graves ....

I wish you luck in a medical world that has little knowledge about the Thyroid or B12 Deficiency and auto-immunity in general ....

I am not a Medic - I do have Hashimotos - Crohns - B12 Deficiency and 72 years of experience !!

[Sleepybunny]

Have you considered putting concerns about b12, symptoms, extracts from relevant B12 documents, relevant blood tests in a letter?

My understanding is that in UK, letters to GPs are filed with a patient's medical notes so are a record of issues raised. It's harder for a GP to ignore a letter.

Link about writing letters to GPs about b12 deficiency

b12deficiency.info/b12-writ...

I am not medically trained.

[Hercules1969 in reply to Sleepybunny]

I don't believe it. When pushed she has now said that she doesn't believe I have any neuro symptoms related to b12 as it has only just gone low. I will however get to see a neurologist. I shall have to hope no big bads await me...

[Sleepybunny in reply to Hercules1969]

So if I understand correctly, she does not dispute you have neuro symptoms but does not think they are connected with B12 deficiency.

There's always the chance that the neurologist will know more about B12 deficiency but sadly lack of knowledge about B12 deficiency occurs amongst specialists as well as GPs so I suggest being well -prepared before any neuro appt.

It might be worth looking at PAS checklist of symptoms and giving GPs/neuro a copy. I did this and added any neuro symptoms not on list, or might be worth putting list of neuro symptoms in a letter to GP as this should get filed with your medical record.

PAS checklist

pernicious-anaemia-society....

"she doesn't believe I have any neuro symptoms related to b12 as it has only just gone low"

It's possible to have severe neuro symptoms due to B12 deficiency with levels that are well within normal range. I was highly symptomatic with levels that were between 300 - 500 ng/L.

Next link has info on being symptomatic with an in range result. It also mentions Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting into the cells.

b12deficiency.info/b12-writ...

Might be worth referring GP/other doctors to UK NEQAS B12 Alert which mentions risk of neuro damage in people symptomatic for B12 deficiency with normal range B12 results (link to NEQAS document in above link).

BMJ b12 article

Emphasises need to treat people who are symptomatic for B12 deficiency even if b12 is normal range, in order to prevent neuro damage.

bmj.com/content/349/bmj.g5226

[Hercules1969 in reply to Sleepybunny]

If it wasn't so serious it would have been funny. She saw a long future of injecting me till whenever opening up before her and she would do anything to avoid it. She's desperate that I take beta blockers for some reason. When I mentioned the guidelines for b12 neuro treatment she accused me of "clutching at straws". I am going down there shortly to get some bloods done, including the parietal one. Frankly, I may have got my specialist appointment but I'm not looking forward to what s/he might have to say.

[Sleepybunny]

When I mentioned the guidelines for b12 neuro treatment she accused me of "clutching at straws"

Putting info about neuro treatment along with reference from BNF, BSH CObalamin guidelines etc in a letter to GP may be a good thing as it can't be ignored if filed with your medical record.

I have on a couple of occasions referred to a letter I'd previously written to GP in an appt and this meant they had to look it up on their system and it had been scanned and filed. I've also referred to previous letters in later letters.

I always include a request in letters to GP that a copy be included in my notes to make extra sure it's filed.

The downside of letters to GPs is that it can irritate some GPs. I gave up worrying about this when I realised that the outcome of my continued deterioration and lack of treatment was going to end up with me suffering dementia type symptoms or spinal damage or worse.

It really is worth fighting as hard as possible to get correct treatment.

In the end when I had exhausted every possibility of NHS B12 treatment, I chose to treat myself.

You mention several neuro symptoms that can be found on lists of b12 deficiency symptoms eg

tremors, whistling in the ears (tinnitus?),headaches

b12deficiency.info/signs-an...

B12 deficiency can sometimes be misdiagnosed as other conditions including ME/CFS and Parkinsons.

b12deficiency.info/misdiagn...

As you are probably finding out, some doctors may have misconceptions about b12 deficiency.

Misconceptions about B12 deficiency (English language article from Dutch b12 website)

stichtingb12tekort.nl/weten...

"desperate that I take beta blockers"

"Ended up on beta blockers for anxiety - check"

B12 deficiency can have a profound effect on mental health. I hope GP is aware of this.

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

pernicious-anaemia-society.... See Page 2 of PAS articles/leaflets.

b12deficiency.info/blog/

b12deficiency.info/blog/201...

I hope neurologist appt goes well.

Is there any chance that HDA patient care trust may be able to help? They are usually quick to respond to enquiries. May require a full medical history.

HDA patient care trust

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

hdapatientcaretrust.com/

HDA pct tel no 0207 935 8366

HDA pct contact form

hdapatientcaretrust.com/con...

[Hercules1969 in reply to Sleepybunny]

Thank you for all your help on this. She has relented on the beta blockers. Just as well even two of them gave me horrible side effects. Nightmares, muscle spasms, skewed vision.

[Sleepybunny]

"I am going down there shortly to get some bloods done, including the parietal one"

What blood tests have been done?

In UK, parietal cell antibody test is not recommended as a diagnostic test for PA. See BSH CObalamin and Folate Guidelines for more info. Some people with PA can have a negative result on PCA test.

Is GP doing MMA, Homocysteine and Active B12 (holotranscobalamin)?

If yes, then worth bearing in mind that if you have had B12 injections or B12 supplements recently this could affect the results of these tests.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

If you're UK based, remember you have a right to get copies of results. GPs can only refuse if they feel giving out results is harmful in some way.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

PAS article about Diagnosis

pernicious-anaemia-society....