Still not lifting

[Hercules1969]

Well I had my last loading dose on Wednesday. If anything a feel weaker and my tremors are throughout my body. Constant headaches and ear/sinus trouble. Whistling in my ears. Muscle pain in my back. Crunchy sounding neck. I think my speech is affected too. I know it can take a while but I am starting to fret that it is something worse. My gastro guy has shaken me a bit by being so dismissive. He said 192 was borderline and he wouldn't even have bothered treating it. He has signed me back to my GP. I am getting quite worried that either I have something else entirely or that my deficiency has triggered something nasty. I have no idea how long I have been this way. Starting to feel a bit lost in the fog.

[Hidden]

look at what it could be alongside the B12 def. I was diagnosed with Fibromylagia last year and it's so easy to say it's that or low B12. At the moment I'm suffering constant headache, cracklings ears and painful sinuses Which set off my neck pain. At this time of the year it's down to tree pollen and as soon as I treat that the symptoms don't disappear but do die down to a manageable level. You could try my go to sinus relief remedy. If two mugs of this lower the symptoms then I'd say it's a sinus/ pollen related issue. You'll need a carton of tomato juice, lemon juice, Tabasco sauce and garlic. 3/4 fill a mug with tomato juice. Add a clove of garlic, crushed, a teaspoon of lemon juice and half to one teaspoon of Tabasco sauce ( start low and add more if you want) Heat in a microwave and drink 2 mugs of this 2 hours apart. Sounds gross but just like spicy tomato soup. Works for sinus pain every time.

[deniseinmilden]

How frustrating! If B12 is the problem then I'd have thought you would have got a better response.

Check out Clivealive's replies as it could be a folate issue preventing the extra B12 from working.

Potassium, magnesium and iron can also be limiting factors.

Look up Marz's replies for advice on thyroid problems.

Don't despair - there's still lots of options!

[Hercules1969 in reply to deniseinmilden]

My Folates is 3.8 apparently which is deemed acceptable but not great. Don't know what the number is on iron but they tell me it is OK. They have previously checked my thyroid but not sure how long ago. Maybe I am just one of the ones that it takes a while with..

[Alesia in reply to Hercules1969]

Folate 3.8 is way too low Dr Chandy told me it should be around 15 to feel well

[Hercules1969 in reply to Alesia]

I am trying to get as much in me as I can. My GP is the epitome of unconcerned.

[deniseinmilden]

Hmm - I start to feel some response in about 10 minutes. It may take a while to get fully better and you can feel worse on the way but I feel that if that was the only problem you would have had something more significant by now.

I know it's hard to find out things when you are feeling rough but if you are getting worse, the sooner the better.

Please keep trying to sort it out - it'll be good when you get a solution to the problem.

[Sleepybunny]

Hi,

"Don't know what the number is on iron but they tell me it is OK"

I always get copies of all my blood test results after being told everything was normal and then finding abnormal and borderline results on the copies. These days I don't believe something is okay unless I have seen the proof.

Access to Medical Records (England)

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

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

"They have previously checked my thyroid "

In UK sometimes GPs only order TSH test which won't give a full picture of thyroid function. May be worth putting any thyroid results you have on Thyroid UK forum on HU. it's possible to have thyroid problems even if TSH is within normal range.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

"had my last loading dose on Wednesday"

Some people experience a drop in potassium levels (hypokalaemia) when they start initial b12 treatment. Have your potassium levels been checked?

b12deficiency.info/b12-trea...

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

Neurological Treatment Regime

I think I read that you are having 6 loading injections followed by an injection every 3 months.

In UK, people with B12 deficiency with neuro symptoms are supposed to have following pattern of treatment..

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months. See BNF link above and NICE CKS and BSH Cobalamin and Folate Guidelines links below.

if you're in UK, GP will probably have a copy of BNF on their desk. Info about neuro treatment regime is in Chapter 9 Section 1.2

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

NICE CKS

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Neurological Consequences of B12 Deficiency

I hope your GPs are aware of the potential consequences of under treatment of B12 deficiency with neuro symptoms.

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Link about letters to GP about under treatment of b12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Other B12 info that may be of use

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...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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/

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/

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...

Folate Deficiency

patient.info/doctor/folate-...

Coeliac Disease

Have you ever had tests for Coeliac disease?

Coeliac Disease

In UK, two first line tests are recommended. NICE guidelines below suggest anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

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 Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

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

H Pylori infection?

patient.info/health/dyspeps...

I am not medically trained.

[Hercules1969 in reply to Sleepybunny]

Thank you. I am going to try and see them tomorrow. I am so fatigued today. No strength in my limbs. I am a writer and I was obligated to give a reading last night which I just about did. My GPs think I have anxiety. They have a tendency to pat me on the head and send me on my way. All they ever want to do is give me sleeping tablets. I am currently on Zopiclone to that end. I have diverticular trouble too. My gastro guy isn't interested.

[Hercules1969]

I have indeed been put on beta blockers for the tremor. I have doubts about their efficacy. BBs work pretty quickly and I noticed no change. But basically she won't refer me to a neurologist until I've tried them.