Fed up with doctors

[Parkes]

I was wondering if people would help me understand my levels my b12 is 134 my d is 46 I have a folic at 1.7 and my iron is 56 . My doctor gave me the six b12 booster injections but now said I can't have them as a blood test for pernicious anaemia was negative . I have now been ill for 20 years started with being diagnosed with ibs then 2 /3 years later being sort of being told I had cfs as the years have gone on my symptoms have goten worse and then was told I probably had fibromyalgia but they don't won't fully diagnose me .have been to several psychologist and have been told my anxiety issues are down to physical issues but the doctors won't take any notice . Am getting really frustrated is there any advise as what I should do .

[clivealive Forum Support]

Hi Parkes are you in the UK?

[Sleepybunny]

Hi,

"My doctor gave me the six b12 booster injections but now said I can't have them as a blood test for pernicious anaemia was negative"

It is possible to still have PA even if Intrinsic Factor Antibody test result is negative/normal (called Antibody Negative PA).

If you're in UK, have a look at

1) BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA should be diagnosed in UK.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) BNF British National Formulary Chapter 9 Section 1.2

Gives details of UK B12 treatment.

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, about a quarter through document. I read the whole document.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAs (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. it also mentions Antibody Negative PA.

"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 book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

If you suspect PA is a possibility may be worth joining PAS.

They can provide info and support to PAS members.

pernicious-anaemia-society....

PAS tel no [phone] answerphone available

B12 blogs

There may be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.

martynhooper.com/

There is also an interesting blog about B12 issues on "B12 deficiency Info" website.

Unhappy with treatment (UK info)?

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/health/

HDA patient care trust

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

hdapatientcaretrust.com/

Access to Medical Records (UK)

Do you get copies of all your blood test results? I learnt to do this after being told everything was normal and then finding abnormal/borderline results on copies. In relation to B12, I look at B12, folate, ferritin and full blood count (FBC).

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

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

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

More on blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

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

[Parkes in reply to Sleepybunny]

need to do alot of reading thanks for your help

[akanari]

My US doctor said that if my b12 was this low (mine was a bit higher than 134) I would need b12 injections for life. She did not even think it was necessary to give the Pernicious Anemia test since there are a number of possible causes. (I asked for it anyway and it turned out that I do have PA.) Actually it now seems as if a daily methylcobalamin (a form of b12) tablet is working better for me. Thanks to kind advice from this site, I tried a supplement after the schedule of shots had become once a month and my symptoms returned. The methylcoblamin supplement worked! (A previous type of B12 supplement I tried before the shots had not worked; I'm not sure why.)

It is hard to find the energy to argue with your doctor or register with a new doctor when you are feeling very ill. I think that you could try a good b12 supplement and see if you feel better, while continuing with your efforts to get a proper diagnosis. I am new to the site but this is my experience and this is what I would say to a friend if they were in this situation.

[Parkes in reply to akanari]

Thanks for your help

[amelirom in reply to akanari]

Hi, I'm in US also , if you don't mind can I ask you what was your b12 level? Mine was 188 and my doctor didn't taught it was bad I got a shot of cyanocobalamin and said to take pills for six months( one month after shot I had been tested by a neurologist and my level was 450 and two months latter dropped at 250) I have all sorts of health problems that I my doctor did not associated with low b12 , I ask her to test my b vitamins as I struggle with tinnitus and I developed chronic insomnia but all doctors that I have seen they pushed benzodiazepines and antidepressants. If I try to tell my doctor something she thinks I tell her how to do her job and she can't be wrong and if I went to her to tell her all the problems that I have ( accumulated over the years ) she felt overwhelmed and she said I have to many problems at once for one visit but it seems that all my problems may have only one root. I'm in Cleveland area, where are you? Do you take pills methylcoblamin?