I’m feeling really unwell at the moment weak shakey and can’t stop weeing. I’ve checked urine sample but just shows high leucocytes which nurse dismisses Also these blood tests say b12 low Thyroid levels show high tsh but if I take more levo I get more shakey. Any comments would be appreciated. Also my ferritin is normally only 85ish but it has jumped up
Blood tests: I’m feeling really unwell... - Pernicious Anaemi...
Blood tests
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ninja1
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27 Replies
•
Vitamin d low and b12, have you shown these results to your gp ?
ninja1• in reply to
No he won’t do anything but I will I feel unwell
• in reply toninja1
Sorry ... did you mean no I haven't shown the doctors .... or no he/she won't do anything about it ?
Have you spoken directly to your GP or written a letter to GP?
Your Active B12 result is below range.
NHS GPs may ignore the results of private blood tests.
Perhaps you could ask your GP to order an Active B12 test or refer you to a specialist who can order one.
UK guidelines indicate that people with the symptoms of B12 deficiency should be treated even if serum (total) B12 is within normal range.
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Hi,
I looked at some of your other posts.
I've assumed each of the results below were for Active B12.
I'm assuming the units were pmol/L for each test.
Please let me know if I've got that wrong.
Although it's tricky to compare as the ref range varies for each test, it suggests to me that there is a downward trend.
I'm not medically trained.
Has your GP seen all these results?
Results
Two years ago
Active B12 49.8 (ref range 37.5 to 187.5 units?)
10 months ago
Active B12 45 (ref range 25.1 - 165 units?)
May 2022
Active B12 33.1 (ref range 37.5 - 150 pmol/L)
Yes says active b12. 33.1active range. 37.5-150 medicheck say too low
I agree with everyone! Your b12 is low and vit D is low, both can make you feel like hell when low. You need to do as sleepybunny suggests and push for b12 injections. They should also treat you with D; however the D they will just give you high doses of pills and then retest in 3 months.
I can’t imagine how you feel having both of these being low.
At a min, start taking 10k IU of vit D per day.
Urinary tract infection?From personal experience urine tests don't always detect it.
If your urine is cloudy I'd suspect this.
Definitely speak to your Gp. Your vit d is insufficient so vit d tablets should easily sort that out over a few months. Possibly the Gp might want to do her own blood test to check b12 if this is a private test. But you should ask about your urine sample. High leukocytes means high white blood cells which indicates a urine infection so as you have symptoms you should ask your Gp whether you need antibiotics for this and they can send your sample off for culture. I don’t understand why the nurse is ignoring the high leukocytes. Good luck.
Prior to PA diagnosis and treatment by hydroxycolbamin B12 injections I needed to wee very frequently. Every 20 minutes was not unusual with desperate urge...not stress related , to exercise/ sneezing etc. With effective treatment situation resolved. Since then I've read a post on here by someone who was a vet (medically trained). Their B12 deficiency led to interstitial incontinence and their description of symptoms and recovery mirorred my own. Can't recall their name but very interesting.
You need regular injections!
There's a lot of info in this post so I suggest taking a few days to read it.
Some links I post may have details that could be upsetting.
"Nurse saysb12 Ok because because ferritin not low"
I have a hunch and I could be totally wrong that the nurse thinks your B12 level does not need treating as anaemia is not present ( and probably the GP as well as I assume they discuss patients' blood results).
I'm sure I've read that about half of people with B12 deficiency do not have anaemia.
Maybe ask the nurse/GP to explain what nurse said in more detail.
I will try to track down some quotes from UK B12 documents that might be worth including in a letter to GP or showing to nurse.
NICE CKS (Clinical Knowledge Summary) on B12 deficiency anaemia and Folate deficiency anaemia includes this note in the section on Signs and Symptoms.
" Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12 "
cks.nice.org.uk/topics/anae...
NHS link about B12 deficiency anaemia and Folate deficiency anaemia includes the following statement in section on Complications.
" A lack of vitamin B12 (with or without anaemia) can cause complications."
nhs.uk/conditions/vitamin-b...
Low ferritin can be associated with iron deficiency anaemia.
Link about types of anaemia
labtestsonline.org.uk/condi...
Link about iron tests
labtestsonline.org.uk/tests...
Some GPs, specialists and other health professionals (including nurses) may have some misconceptions (wrong ideas) about B12 deficiency.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
UK BNF treatment info has changed since above blog post was written.
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Local B12 deficiency guidelines
Have you tracked down the local guidelines on treating B12 deficiency for your CCG or Health Board and compared them to BNF/BSH and NICE links below?
If you want to know why I suggest that UK forum members get hold of the local guidelines for their area, see blog post below....
b12deficiency.info/gloucest...
Some local guidelines in UK have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
UK B12 documents
NHS article about B12 deficiency and folate deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Low dose cyanocobalamin tablets 50mcg are sometimes used to treat dietary B12 deficiency.
My understanding of UK guidelines is that severe dietary B12 deficiency especially if neuro symptoms are present should be treated with B12 injections.
There are moves across UK to put more people onto high dose oral cyanocobalamin tablets 1000mcg as an alternative to B12 injections.
The evidence that oral b12 is as effective as B12 injections is of low quality although there are some forum members who manage their condition by using high dose oral. High dose oral did not work for me.
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
Link below outlines two patterns of treatment for B12 deficiency in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Vital that B12 deficiency is treated adequately. Inadequate treatment increases the risk of permanent neurological damage.
Thank u I’ve sent them to docs but probs won’t hear anything
• in reply toninja1
Ninja, this is your health, please please chase them up if they do not respond. Have you anybody who can help you with dealing with this, I know when your feeling awful just dealing with everyday things are bad enough, but when you are like you describe it's even more difficult.
I wish you well and hope you get a response from the gp.
🤞
ninja1• in reply to
It’s a nightmare dealing with docs. I’ve sent them in but I also sent urine in last week I really need to change docs but inh@vent got the strength I also have a rash which is so sore on my labia flap I think it’s off the persistent weeing so I’ve asked for something for that.
• in reply toninja1
I wish I lived nearer to you, to give you support.One thing you could do for the soreness is use vaseline, this will give a protective barrier to the sore, making sure you wash the area first with water, dry and then vaseline, also add a little salt to bath water (Lukewarm
Water) I hope the will give some relief !
ninja1• in reply to
Thank u
Some people with B12 deficiency on this forum have reported issues with fungal infections such as thrush.
I think B12 deficiency can knock the immune system and make people more prone to infections.
NHS link about thrush
nhs.uk/conditions/thrush-in...
If you can't get to see GP, may be worth talking to your local pharmacist.
nhs.uk/nhs-services/prescri...
There may be an NHS GUM clinic in your area that specialises in genitourinary medicine.
You could ring NHS 111 to ask for advice.
Link about NHS 111
This link about writing letters has a set of letter templates to help people write letters to their GP about B12 deficiency.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and give patient time to express themselves.
Keep letters short, to the point and polite. Harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
It's really hard to keep fighting to get treatment if your head feels like it is stuffed with cotton wool but as Hidden says .... it's your health.
I learnt a very hard life lesson when trying to get treatment - that sometimes the only person who is going to help is yourself.
I hope you have a supportive friend or family member.
The person who runs the B12 Deficiency Info website has helped some forum members.
PAS (Pernicious Anaemia Society) can offer support and pass on useful info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
PAS hopes that face to face meetings will restart this year.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
Before I got tested (at my own request) for B12 I had scans and tests for bladder cancer. I had become incontinent. I had to buy Incontinence pads. I was up 8 times a night. I couldn’t go for walks. It was only after I was treated B12 EOD for neurological symptoms that my incontinence disappeared. I am now on 8 weekly NHS injections and supplement SI weekly. It was totally down to PA my symptoms had gone so far over two years I couldn’t walk upright. I feel lucky to have asked for a tests. I don’t think I would be here now.
"I really need to change docs but inh@vent got the strength "
Changing GPs is quite easy.
NHS link about how to change GPs.
nhs.uk/nhs-services/gps/how...
It does say in above link that if you need help filling in the forms, to contact the GP surgery you have chosen and tell them you need help.
B12 deficiency can lead to nerve damage (neuropathy).
So can folate deficiency in some cases.
Problems with urination could be linked to nerves being affected.
NHS link about peripheral neuropathy
nhs.uk/conditions/periphera...
Do you have other neurological symptoms?
Here's a few....
tingling
pins and needles
electric shock sensations
insect crawling sensations
burning sensations
memory problems
difficulty finding the right word (nominal aphasia)
clumsiness, bumping into things
dropping things
balance issues
twitching muscles
limb jerks/digit jerks ( known as periodic limb movements)
flickering eyelids
restless legs
strange behaviour eg car keys in the fridge, boiling a kettle without any water
loss of cognitive ability ( I lost the ability to do mental maths)
proprioception problems
Proprioception is awareness of your body in space.
If your balance is worse when it's dark, your eyes are closed or your view of the surroundings is blocked then that is suggestive of potential proprioception problems.
B12 deficiency symptoms lists (Folate deficiency also mentioned)
There may be other neuro symptoms listed in links below.
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Does your GP have a list of all your symptoms, including every neurological system and definitely any that affect your spinal area?
Consequences
B12 deficiency can have severe consequences including potential damage to spinal cord if treatment is inadequate or diagnosis delayed. Your GP should know this but it's possible that they don't so may be worth passing some info on neuro effects of B12 deficiency to GP.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
If you have neuro symptoms, have you asked for a referral to
1) a neurologist?
NICE guidelines - Suspected Neurological Conditions
2) a haematologist?
If gut symptoms are present
3) a gastro enterologist?
NICE when to refer B12 deficient patient to haematologist/gastro enterologist
cks.nice.org.uk/topics/anae...
I used to put requests for a referral into a brief letter to GP along with a list of relevant symptoms and quotes from UK health documents that supported the request.
Just an update a different g p rang me today and arranging nhs blood tests and says he will act on the results as necessary as the practice requires nhs blood tests not private so it’s a start
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