Blood test result of 198

Hi

New here. Have been feeling awful for weeks. Started with feeling very short of breath, even if not exerting myself, dizziness, total exhaustion. Last winter I was walking 4 miles with my dogs but was now hard pushed to walk 200 yards.

GP at first was helpful, ordered chest X-ray and ECG ( I'm 61) and blood tests. Said everything was normal but sent me to an Endicrinologist as he noticed a swelling in my throat ( I just thought I had a saggy neck) Scan showed that was "just a goitre" and needed no treatment.

GP lost interest, told me I had post viral fatigue and to "rest and enjoy the summer" Didn't give me a sticker but might just as well have.

Ordered private blood tests, expecting problems with thyroid or adrenal problems. These were low, just within the normal range but my B12.came back as insifficient at 198. Sent results to GP, nothing yet.

Bought B12 patches online and the difference is phenomenal. 24 hours later breathlessness has all gone. Dizziness gone. Fog brain improving. Still tired but not as much.

Do I just continue buying the patches? I'm vegetarian (50 yrs plus) and have to say I've not eaten well for last 12-24 months due to a very stressful situation ( now resolved)

Appreciate any advice.

[PAS-admin Partner]

If the patches work for you then by all means continue with them. But it might be worth having a couple of tests to see if they can find the cause. Vegetarian diet alone is usually not enough to get a defiency, unless it's also lacking in egg and dairy. A 'normal' person has a supply of B12 in the body for years, so if yours was low, it would imply that there was a problem for some years. Could be some factors together, or 'just' one. Let's see what the GP says..you never know, maybe you have a good one that will at least order a couple of causes related tests. As for treatment, if the patches work, keep them if you prefer those to another means of treatment.

[Gambit62 Administrator]

Are you a member of TUK - if not might be worth joining and posting your results there with ranges - 'normal' is based on statisitical averages and what is okay for one person isn't necessarily okay for everyone - its very true for B12, but it can also be true for thyroid etc.

[Hidden]

Thanks for your replies.

I have zero faith in GP. Registered 2 years ago, been to them for 3 problems and misdiagnosed each time.

If he or she deigns to see me, what should I ask for next ? I've read a little on why B12 isn't absorbed but not sure what I should ask doctor for. If they won't see me, are there any tests I can arrange privately?

Will look at at TUK ( Thyroid uk?)

Thanks for any and all info and advice.

[Gambit62 Administrator in reply to Hidden]

Sorry but yes - TUK = Thyroid UK.

I would go armed with a list of your symptoms

pernicious-anaemia-society....

and relevant details from the list of documents that fbirder put together - which can be found in the pinned posts - particularly the BCSH guidelines on treatment.

You can ask for test that may clarify that the cause of the deficiency is not because you are a vegetarian - such as IFA (though it's notoriously prone to error - a positive result is significant but a negative result doesn't rule out PA).

TUK forum members should be able to give you advice on what to ask for in relation to a potnetial thyroid problem

[Sleepybunny]

Links about tests..

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range

1) BCSH Cobalamin and Folate guidelines

2)bmj.com/content/349/bmj.g5226

"Do I just continue buying the patches?"

Have the GPs assumed your B12 levels are purely due to your vegetarian diet?

Have they checked for other possible causes of b12 deficiency, see link?

b12deficiency.info/what-are...

Supplementing with B12 prior to diagnostic tests can make it difficult to get a diagnosis.

B12 deficiency Symptoms lists

b12deficiency.info/signs-an...

pernicious-anaemia-society.... Click on Symptoms Checklist

B12 books

"Could It Be b12" by Sally Pacholok and JJ. Stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with UK guidelines.

patient.info/doctor/pernici...

martynhooper.com/

b12d.org

[Hidden]

Thank you for all the information.

The GP said all my blood tests were normal. Obviously something was wrong with me so I paid for thyroid hormones, B12 and Vitamin D tests from Blue Horizon.

I shall start reading up all the links provided.

[Hidden]

Forgot to say --- GP has so far not responded to my letter and copy of test results. It seemed to me that because they'd investigated the worst symptoms---dizziness and breathlessness-- with Xray and ECG and found nothing, they lost interest. I don't even know if my notes show I'm vegetarian.

I've tried various questionnaires onLine and I seem to come up as B12 deficient and hypothyroid.

[Sleepybunny]

A link about writing to GPs about b12 deficiency

b12deficiency.info/b12-writ...

"GP has so far not responded to my letter and copy of test results"

Do you mean that they have not given you a copy yet? My understanding is that you are entitled to a copy of test results. I think GPs are allowed to refuse if they feel that seeing your test results could cause you harm. I think a lot of people are able to access their test results online, your surgery shoudl be able to tell you about this.

england.nhs.uk/ourwork/pe/p...

Sometimes people talk to the practice manager when unhappy. I think people need to be very tactful when complaining as I have heard of people who get labelled as difficult patients.

Other links if unhappy with treatment/diagnosis

nhs.uk/NHSEngland/complaint...

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

hdapatientcaretrust.com/ A charity that gives free second opinions on diagnosis and treatment.

"I don't even know if my notes show I'm vegetarian. "

Some people on the forum get a copy of their complete medical records, can be expensive, probably at least £50. Some people find it interesting to see what has been written about them. A formal wriiten request is probably necessary to get records from GP surgery but can be much harder to get records from hospitals. I have heard of people who have found out that they were diagnosed with PA (Pernicious anameia ) in the past but were not told at thetime.