Pernicious Anaemia Society
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Should I up the Jarrows B12?

Hi everyone I have a question, I have been taking 15000 mcg of Jarrows B12 under the tongue for 5 months as I have enlarged red blood cells, folate ok, dreadful fatigue originally diagnosed as ME/CFS. Such low blood pressure that when I stand up I have a sharp pain in my head, heart pounds off and I am dizzy and faint. Muscle twitches and jumps when I am trying to sleep, lots of ectopic heartbeats, stomach issues, peripheral neuropathy in my feet and top of head, strange walking gait and very wobbly walking. Cannot walk far.

My doctor will not treat me even though I have enlarged blood cells and do not drink or a vegetarian as my B12 6 months ago was at 660. I also have an underactive thyroid which was getting worse though in range at 3.90 I had been left on 50 mcg for 18 years.

When I first starting taking the B12 10,000 then upped to 15,000 I did start to feel a little better, now I feel back to square one, if there any of you out there that take more than 15,000 mcg's of Jarrows? am I ok to up it even further?

Katherine xX

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I took 5 mg of Jarrows Methyl B12 orally daily 2006 to January 2017. It fixed the peripheral neuropathy that I developed in mid 2005. When my neuropathy recurred in January 2017 along with a few central effects (loss of sense of smell, balance disturbances, brain fog, memory problems, tinnitus), I didn't try increasing the oral dose, but switched to injected hydroxocobalamin. This article confirms to me that I made the right decision.

b12-institute.nl/caution-no...

High dose oral B12 doesn't work for everyone or all the time.

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Thank you Martin for your reply. I cannot get my doctor to sanction B12 injections and I have tried several times, even though I have enlarged blood cells, hair fulling out, dreadful low blood pressure 80/59, tinnitus that is a contant brain buzzing in my ears. The worse I feel the worse the tinnitus is. Fatigue is bad. I normally have a very high IQ but now my brain feels like it's not working, it feels like I have adult ADHD. I know I could go the self inject route and find a nurse or someone to show me how. I am screamish about this and have not plucked up the courage to do this.

Katherine xX

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What was your mcv when your b12 was 660?

Since you mention that a cold wipes you out, in a different post, What was your alkaline phosphatase?

Have you had any newer test results?

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Hello KimberinUS I don't have my results in front of me at the moment but all those ones MCV and others were flagged high over range. I had a high IGA over range too, folate and ferritan were in range. I don't think I had alkaline phosphatase, I will look later...I am going to ask doctor for more blood tests as I have upped my levothyroxine from 50mcg to 75mcg and now 100 mcg...I had high cholesterol and when my tsh levels go over 2 I get high cholesterol.

Thank you for replying xX

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Hi,

Have you considered joining and talking to PAS? Costs £20 for a year.

They may be able to offer support and at very least I'm sure could point you to useful info that might encourage GP to reconsider treating you.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone so messages can be left

PAS support groups in UK

pernicious-anaemia-society....

I use sublingual b12 in addition to receiving injections. Injections have much more of an effect on me than other forms of b12 treatment.

I have written some very detailed replies recently with lots of B12 info so I suggest searching for them on forum.

Other UK b12 websites

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

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.

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 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

If you're in UK, I'd suggest reading all of these below.

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

BNF

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

NICE CKS

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

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about 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...

Folate Deficiency

patient.info/doctor/folate-...

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I have joined about 8 months ago Sleepybunny but I do have trouble navigating their website and where actually to look for some support.

1 like
Reply

Hi,

Best to ring them and leave a message, in my opinion.

PAS tel no +44 (0)1656 769717 answerphone

If you are a PAS member, are any of these PAS support groups close to you?

pernicious-anaemia-society....

pernicious-anaemia-society....

B12 Cafes in Leicestershire

b12deficiency.info/b12-pop-...

B12d.org meetings near Durham

b12d.org/event

"dreadful fatigue originally diagnosed as ME/CFS"

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

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Thank you Sleepynunny I will ring them xX

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