What's wrong with me?: Hi, I'm 34 year... - Pernicious Anaemi...

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What's wrong with me?

Aeowin profile image
15 Replies

Hi, I'm 34 year old female and I've been trying to get to the bottom of my symptoms for nearly 10 years! I originally thought I had some sort of Thyroid disease or something associated with one, but I kept hitting a brick wall with "NHS norms.

" so...

I saved up and paid for private testing...

My recent results from Medicheck shows my Thyroid is all normal (thankfully), but that leaves me wondering what IS going on with me then?

I was diagnosed with Vit D deficiency and Folate deficiency 3 months ago and given supplements. I have yet to get my results back on the retest of Vit D but my Folate is now back up to the top range of normal. However, I don't feel any better at all.

My MAIN symptoms are;

Tired all the time

Cold all the time

depression

hair loss

dry skin

weakness

heart palpitations

dizziness

headaches

occasional numbness/tingling in my lower legs

more forgetful/brain fog

Below are my blood results from October 2018

Serum vitamin B12 level (XE2pf) 484 ng/L [211 - 911]

Serum ferritin level (XE24r) 33 ng/ml [10 - 322]

Serum folate level (42U5.) 4.2 ng/ml [5.4 - 24] - Below low reference limit

Serum total 25-hydroxy vitamin D level (Xabo0) 36 nmol/L [75 - 250]

Below low reference limit

Here are my recent blood tests

Serum vitamin B12 level (XE2pf) 349 ng/L [211 - 911]

Serum folate level (42U5.) > 24 ng/ml [5.4 - 24] - Above high reference limit

ferritin level (XE24r) 29 ng/ml [10 - 322]

Any thoughts? My full bloods always come back as "normal" I will be going back to the Dr's again to discuss my results (only because I have booked in, not because they wanted to see me) Are there any other tests I should request? I have read on here that anything lower than 500 for B12 with my symptoms should be treated, is that right?

Thanks in advance.

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Aeowin
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15 Replies
Marz profile image
Marz

Have just read your Post and thread of 3 months ago on TUK. It would seem some things are still the same - low Ferritin. So maybe worth reading through again ... Also post your Thyroid results on TUK - they may not be as normal as you have been told 😊

Aeowin profile image
Aeowin in reply toMarz

I have updated my old TUK post now, but here are my results for reference

THYROID STIMULATING HORMONE 0.748 mIU/L 0.27 - 4.20 F

REE THYROXINE 13.900 pmol/L 12.00 - 22.00

FREE T3 4.39 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00

I'd say they were pretty normal, no?

Marz profile image
Marz in reply toAeowin

Your FT4 & FT3 would be better further up the range. As your TSH is also low it is possible you have a Pituitary issue or Secondary Hypothyroidism. Docs say it is rare - but more common than they think - I have read ...

Aeowin profile image
Aeowin in reply toMarz

I will keep that in mind....but until I have ruled out anything else, the Dr's won't even consider that a possibility....unfortunately

Nackapan profile image
Nackapan

The only result that rings a bell with Me is your ferritin level. Below about 60(I've been told by a doctor) can cause hair loss tiredness ect. If you Google symptoms of low ferritin that may help you . Ask your g.p. write all your symptoms and hand them to the doctor. Also ask about loading doses of vit D and treatment for your symptoms. You have alot of symptoms. I hope you get on okay with getting treatment from your doctor. Also tell them about any supplements (folic acid) you've been taking if applicable as could alter readings . Sounds odd you've not been asked to make an appointment. Take someone with you. ? Book a double appointment?

See a different doctor?

I wish you well.

Sleepybunny profile image
Sleepybunny

Hi,

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

b12deficiency.info/what-to-...

I had typical symptoms of B12 deficiency with B12 results mainly between 300 - 500ng/L.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA(Pernicious Anaemia)?

In UK this would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.

Tested for Coeliac disease?

NICE guidelines below recommend that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Tested for H Pylori infection?

patient.info/health/dyspeps...

Internal parasites?

Fish tapeworm can lead to severe B12 deficiency.

Exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

BMJ article below recommends symptomatic patients should be treated even if B12 is within range.

UK B12 documents

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...

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 most UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies. I cried when I read this as it was like reading about myself.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

If you think PA is a possibility then may be worth joining and talking to PAS. PAS can offer support and info about PA.

Blog post showing how PAS can support members seeking PA diagnosis.

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

May be stories on these that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I note that your B12 level appears to have dropped over last 3/4 months.

Oct 2018 B12 level 484 ng/L [211 - 911]

? 2019 B12 level 349 ng/L [211 - 911]

Has GP commented on this?

Do you have results for full blood count test (FBC)? FBC can have helpful clues as to whether B12, folate or iron deficiencies are possibilities.

My full bloods always come back as "normal"

Have you seen the actual results?

These days I don't trust what I am told about my results unless I have a copy in my hand.

I was told everything was normal more than once and then found abnormal/borderline results when I got copies.

Some UK GP surgeries have online access to a summary of results/records. Details on surgery websites.

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-...

Iron Studies

labtestsonline.org.uk/tests...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link plus letter templates including one for letters to GP about being symptomatic for B12 deficiency with normal range B12 result.

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/

Neurological Symptoms

Numbness , tingling, brainfog would usually be considered as neurological.

Do you have any other neuro symptoms eg tinnitus, burning sensations, tremors, memory problems, balance problems, word finding difficulties, restless legs etc?

There are many other possible neuro symptoms.

If yes to neuro symptoms, have you been referred to a neurologist?

Untreated or under treated B12 deficiency can lead to neurological damage including spinal problems.

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Other referrals

Do you have any gut issues?

If yes, have you been referred to a gastro enterologist? gastro specialist may be able to spot signs of gut damage from PA, Coeliac, H Pylori etc.

Other possibilities

Have you ever been bitten by a tick or been in an area that has ticks?

If yes, have you ever been tested for lyme disease?

lymediseaseaction.org.uk/

Is there a history of auto-immune conditions eg PA, lupus in your family and if yes is GP aware of history?

More B12 info in pinned posts on this forum.

I am not medically trained.

Aeowin profile image
Aeowin

UPDATE

My Vit D results are back

Serum total 25-hydroxy vitamin D level (Xabo0) 120 nmol/L [75 - 250]

Back to "normal" it seems, so no underlying issue with absorbing vitamins. I'm running out of ideas 😓

Sleepybunny profile image
Sleepybunny

Hi,

I think it could be of interest that your B12 level has dropped between readings.

It's possible to have severe B12 deficiency with B12 levels that are well within range. I speak from personal experience.

Here is a list of some of the symptoms I had over many years with most of my B12 results within range

Migraine

Restless legs Syndrome (RLS)

Pins and needles, especially hands and feet but also spine and elsewhere even teeth

Word finding difficulties

Brainfog

Clumsiness, dropping things

Bumping into things

Balance problems

Daft behaviour eg boiling kettle without any water, putting phone in fridge etc

Mouth ulcers

Recurrent fungal infections

IBS

Twitching muscles

electric shock sensations

insect crawling sensations

vertigo

tinnitus

There were many other symptoms as well as the ones I've listed. Most of these symptoms improved once I got B12.

I've read of cases where people have suffered permanent spinal damage from B12 deficiency with B12 levels that are within range.

Has your GP considered the possibility of Functional B12 deficiency?

This is where as person has plenty of B12 in their Blood but it's not getting to where it's needed in the cells.

Link below mentions Functional B12 deficiency. I also suggest looking at the NEQAS Alert in same link.

b12deficiency.info/b12-writ...

Have a look at the BMJ link and BSH links in my post above. Both indicate that it is possible to have B12 deficiency with normal range B12.

Aeowin profile image
Aeowin in reply toSleepybunny

This is great, thank you. I will read these and take them with me to my appointment.

Sleepybunny profile image
Sleepybunny in reply toAeowin

"was diagnosed with Vit D deficiency and Folate deficiency 3 months ago and given supplements."

Is your GP aware that treating folate deficiency without treating a concurrent B12 deficiency can potentially lead to neurological damage?

I think (I'm not medically trained) that this is because one of the signs doctors look for when diagnosing B12 deficiency is enlarged red blood cells (macrocytosis). Macrocytosis can also be linked to folate deficiency. See link about macrocytosis in my post above.

Giving folate supplements to a person with macrocytosis may mean they then produce normal sized red blood cells even though they may have B12 deficiency and therefore they may continue to develop neurological problems due to lack of B12. The effect of the B12 deficiency on red blood cells may be masked by the effect of the folate supplements.

This link mentions the need to treat concurrent B12 deficiency if treating folate deficiency. See Management section in link.

patient.info/doctor/folate-...

This issue is also addressed in BSH Cobalamin and Folate Guidelines (link in my post above).

There is a useful summary of mainly UK B12 documents in third pinned post.

Misconceptions about a B12 deficiency

English language article from Dutch B12 website. Other useful English language articles on this website.

stichtingb12tekort.nl/weten...

Help for GPs

1) PAS website has a section for health professionals that your GP might find interesting. GPs and other health professionals can join PAS for free.

pernicious-anaemia-society....

2) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

Alesia profile image
Alesia

Your B12 has dropped considerably, which suggests deficiency, and ferritin is quite low between 80-100 is optimal. You don't say what your VitD is now? But it was quite low before.

Aeowin profile image
Aeowin in reply toAlesia

Hi Alesia, thanks for your reply, my Vit D is now

Serum total 25-hydroxy vitamin D level (Xabo0) 105 nmol/L [75 - 250]. I have been to see yet another Dr recently and she is adamant that it's not B12 deficiency...She has however acknowledged that my ferritin is low and given me supplements and is testing me for celiac's. As the NHS doesn't test for active b12 I'm going to pay privately to have it tested once I get my celiac's results back. Dr is leaning towards a diagnosis of ME/Chronic Fatigue Syndrome.....

Alesia profile image
Alesia in reply toAeowin

Personally I wouldn't accept the Dr ruling out B12d, I had all the exact same symptoms as you, my B12 was 358. I fought for a year to get anyone to listen to me and try the B12 shots, I felt so ill, my GP finally gave in after I wrote her a letter, and since having the B12 shots I haven't looked back, everything got better. It took several months before I started feeling well again and each time I had a B12 shot things improved further. Many Drs are ignorant as far as B12 deficiency is concerned! Dr Joseph Chandy was the man who put me on the right track and I can never thank him enough. I had all the tests Active B12, MMA, Homocysteine etc none of them are gold standard and if you have been taking supplements the tests will be skewed anyway so you are wasting your money! My active B12 came back high because I had been supplementing but I still felt so ill, the only test that came back with any concern was Homocysteine which was quite high, everything else was normal so I say treat according to symptoms not numbers!

Aeowin profile image
Aeowin in reply toAlesia

My Homocysteine is mid range. I haven't taken anything for fear of it skewing any blood tests so no problems there. Unfortunately it's going to be a ruling things out excercise.....

Alesia profile image
Alesia in reply toAeowin

Thought this might be of interest to you

bmj.com/content/349/bmj.g52...

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