Test results from medicheck

[buster_uk]

Active b12 normal range pmol/L37.5 - 188

Mine 22.6pmol

Folate range ug/L> 3.89 - 20.58

Mine ug/L 2.78

Ferritin ug/L 30 - 400

Mine is 67ug/L

Thyroid test OK need to recheck in three months

[Judithdalston]

I suspect you know that folate and ferritin should be at least halfway thru ranges, but some research suggests ferritin should be in 100-130 range, depending on other ailments etc. B12 should be near top of range, but note Medichecks do active not serum B12, which is a better test than usual NHS one. So everything is low, and needs addressing ASAP. Low folate goes hand in hand with low B12 and need treatment together. Is your dr. not helping with B12 and folate deficiencies, including further tests ( for eg PA) and injections/ supplement prescription and advice? I notice you have had Thyroid tested, as ‘ok’, what was tested TSH, FT4 and FT4 and what were the actual results ( and ranges for forum members not familiar with Medichecks’)? Do you know if you have thyroid autoimmune antibodies (TPO and /or TgAb), as poor gut absorption is frequently associated with this...if so you should also have vit D tested?

[buster_uk in reply to Judithdalston]

Tsh 0.27 - 4.2 R

Mine 2.17

Free t3 3.1 - 6.8 R

Mine 5.53

FREE Thyroxine 12 - 22 R

Mine 23.4

My NHS gp would not test me for b12 or folate saying I was suffering from anxiety and depression. It is only a one Dr. Practice.

I have been so poorly over the last decade or so. I have ordered ampoules from Germany they came today as I perceived this problem.

[Judithdalston in reply to buster_uk]

Yes your thyroid results look good. Daft dr. ...it does not cost much to do folate and b12 tests! I’m in rather similar position re my dr. ...feeling many of b12 deficiency symptoms( except loosing weight) and all I got tested was calcium and blood count ( and thyroid which I didn’t ask for since DIYing my hypothyroidism with T3 only trying to cure same symptoms over last year as could have been hypo causing them...but not). I’ve got self medic. b12 stuff too.

[Marz in reply to buster_uk]

Thyroid anti-bodies - were they tested ?

[buster_uk in reply to Marz]

No they did not test antibodies

[Marz in reply to buster_uk]

Maybe next time - to rule out Hashimotos ...

[Dickydon in reply to buster_uk]

I really have no sympathy for these doctors who think they're above the mind of its patients. Most of us are fully aware of the way we feel and what can be done to correct the problem/s, yet, these often arrogant GP's whose thinking is £££/$$$/€€€ and not what's best for the patient. Whenever someone reports extreme tiredness, feeling low, etc... these are the first tests your GP should be doing! It might even save his sole run practice a lot of money down the line by not prescribing you the wrong poison that he does and give you the meds your body needs.

[pollianna in reply to buster_uk]

Bless you..How many go away with real issues having been told its depression..Thank goodness you didn't listen.

Having the ability to inject will set you free. There are amazing natural folates out there so you won't need to buy synthetic supplements either.

I find a good all round B suppliment works as well as Niacin which gives a flush

[Foggyme Administrator in reply to Judithdalston]

Judithdalston. For clarification...

'I suspect you know that folate and ferritin should be at least halfway thru ranges, but some research suggests ferritin should be in 100-130 range, depending on other ailments etc. B12 should be near top of range'

Please can I make you aware that whilst these kind of 'optimum' levels are often quoted on the thyroid forum as being relevant to those with hypothyroidism, this notion of optimum levels does not apply similarly to those with PA/B12 deficiency.

Likewise, in the absence of thyroid issues (which I can't comment on) B12 does not need to be near the top of the range. For majority of the healthy population this would not be a realistic or necessary level to aim for. And in particular, where B12 deficiency is present, once treatment has commenced, B12 levels are meaningless. The ideal amount of B12 to take is the amount (and at a frequency) that keeps symptoms at bay. So, B12 deficiency and the symptoms it causes cannot be managed by looking at B12 levels.

With respect to issues to do with hypothyroidism, it is not usual for us to comment on thyroid blood results on this forum. This is not our area of expertise and so, with the exception of suggesting which tests to do, we always direct those with thyroid issues to the Thyroid UK forum, where they can get the expert advice that is not available on this forum.

It's quite difficult sometimes when there are cross-over conditions, symptoms, and ways of treating (be that with vitamins, minerals, meds etc.). If you are interested in learning more about PA and B12 deficiency there are links to information in the fourth and fifth PAS pinned posts to the right of this page.

All excellent reads and they will help with the PA / B12 deficiency aspect of things.

👍

[buster_uk]

My previous ferritin test 2 yrs ago was 155ug/L

[fbirder]

So you are deficient in both B12 and folate and you have a family history of PA.

You need a new doctor ASAP.

Write to your doctor with those test results. Insist that you get tested for both B12 and folate, plus a full blood count - within the week. As soon as you have the blood taken start taking oral B12 supplements (you say your diet doesn't include a lot of meat or veg, so that may be the cause of your deficiency).

WHen the test results get back insist on the regimen for people with neurological symptoms - injections every other day until no further improvement in symptoms, then every 8 weeks.

If you get no joy from the doc then join the PAS and give them a ring.

Self injection will mean you'll never get a diagnosis from the NHS. But don't delay going down that route for more than 4 weeks.

[buster_uk in reply to fbirder]

Thank you so much. I have cried every day for over 18months in pain and being ashamed of being ill. I will try my gp again. Its not only the nerve pains it's also weakness, being pale, breathless, dizzy, insomnia, very dry flaky skin. Alway cold hands and feet, internal shaking. I did have an ultra sound about two years ago stating larger than normal splean and liver. But nothing was done. I get nausea and vision problems my tongue is cracked and large. I have lost lots of teeth over the last two years. My mood is low I have panic attacks, I forget things. Leg and arm cramps, sore tounge, tingling, numbness, dry eyes and mouth, tachycardia, When I open my mouth the corners hurt and my dental symptoms make me look like I've been on methamphetamines. Which I've never taken, don't even like paracetamols. I'm so fed up because even my family are convinced I am nuts and separated themselves from me. Nightmare.

[Sleepybunny]

Hi,

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

I think it's worth thinking about joining and talking to PAS. Costs about £20 for a year's basic membership.

PAS can suggest info you could pass to your GP.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no 01656 769717 There is an answerphone.

PAS members can access useful leaflets/articles on website eg

"An Update for Medical Professionals: Diagnosis and Treatment " which some forum members have given to GPs.

pernicious-anaemia-society....

PAS members can sometimes arrange for their GPs to talk to PAS but PAS members need to liaise with PAS first.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

Unhappy with Treatment (UK info)?

My personal opinion is that it is sometimes more effective to put queries about treatment/diagnosis into a letter.

In UK, my understanding is that letters to GP are filed with medical notes so less likely to be ignored than info passed on verbally or on photocopies.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

This link has letter templates.

Point 3 is about GPs refusing to do diagnostic tests for B12 deficiency.

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/

If you need support to complain about treatment, there are organisations that offer advocacy services.

nhscomplaintsadvocacy.org/

seap.org.uk/services/nhs-co...

Your MP may also be interested in hearing your story.

parliament.uk/mps-lords-and...

Perhaps your GP might like to see a copy of this flowchart?

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA in UK.

"my tongue is cracked and large"

"open my mouth the corners hurt and my dental symptoms make me look like I've been on methamphetamines"

Do you have ulcers anywhere in your mouth?

Have you had a dental appointment recently?

Might be worth seeing your dentist and asking if your tongue and dental symptoms are symptomatic of b12 deficiency.

If your dentist thinks they are, hopefully they will write to your GP suggesting you are tested for B12 deficiency.

Have you asked GP to refer you to a neurologist? You mention symptoms such as nerve pains, weakness , dizzy, tingling, numbness that are usually considered neurological.

If you have gut symptoms, have you been referred to a gastro enterologist?

Gastro specialist hopefully would spot signs of gut damage from PA, Coeliac disease etc.

NICE CKS link below suggests GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

I sometimes wrote a short, polite letter to GP when I wanted to be referred to a specialist doctor. I included any evidence that supported my request eg symptoms list, blood test results, relevant personal and family medical history, extracts from UK B12 documents.

UK guidelines on Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

UK B12 Blogs

There may be stories on these blogs that are relevant to you. Some of the stories can be upsetting.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I am not medically trained.

fbirder suggested you needed a new GP. It's easy to change GPs.

nhs.uk/common-health-questi...

I stayed far too long with one GP practice. I am convinced I would have developed dementia and spinal damage if i had stayed with them. I had many of the symptoms you mention.