Need advice on what else I should have included in my blood test. Haematologist is already going to test active B12, MMA and homocysteine after stopping B12 injections for 4 months to try to get to the bottom of why I’m having symptoms.
History of Hashimotos 2019, vitamin d 2020 plus co factors. Low folate historically 3 month treatment, Have taken b complex tablet on advice from thyroid uk since 2020 so on all blood tests since B12 always been high.
Gp agreed to start b12 injections even though blood test showed no anaemia and high serum B12 as 2021 started with pins and needles and left sided headaches which then increased over time to list below but referred me to haematologist because felt uncomfortable to give more loading doses due to lack of evidence. Symptoms went down to original pins and needles, headache and hand tremor all to a lesser degree.
Haematologist plan do blood test when on b12 injections, stop injections to see if symptoms return and try to find root cause. 4 months will be December 15th.
Pins and needles hands and feet N
Numbness feet. Fingertips N
Skin crawling sensation N
Headache
Fatigue
Nerve tingling in face N
Mouth ulcers sore tongue
Brain fog. N
Word/ name finding difficulty. N
Hand tremor. N
Internal tremor/jitters
Dizziness. N
Dry/watery eyes. N
Breathless, feel not enough breath
Diverticulitis/disease
Joint pain
Heartburn
As you can imagine these symptoms have returned from approximately 2 months in. Any advice would be most welcome, thank youx
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Fluffyone
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Iron Anaemia does not need to be present to be B12 deficient. Doctors are not well read if still rely on this . A late stage shows changes in blood cell size.
My daughter had megobolastic blood cells.
You seemed to get a good clinical response to B12 injections.
As youve had more symptoms return since b12 injections have been stopped surley that's enough evidence they benefit you.
Keep a symptom diary
Sounds like you G.p is trying to help you as not everyone gets the 'extra' testing.
I'm not familiar with thyroid symptoms but many overlap
B12 deficiency alone have given me all the symptoms you list and more .
The sore mouth and ulcers only transient and minor for me and I think linked to folate deficiency as well.
My daughter had chronic mouth problems .
She still needs daily folic acid after a short term high dose otherwise specific symptoms mouth symptoms return.
The crawling flesh and tremors i put down to low ferritin.
Bowel issues for me were evident before but put down to the menopause and hormonal changes.
My b12 def. trigger.
Resolved on regular b12 !!
I've left with a vestibular disturbance.
The autonomic system can also be affected.
One of the things my daughter now has to live with is POTS .
Did you ever get an
Intrinsic factor antibody test?
If positive = Pernicious anaemia
If negative does not rule it out .
Some have had several test soften private before one positive one .
Hope you get a good treatment plan after further testing.
Lots of links to read through on sleepybunnys posts and on The PAS website .
Tracy witty
And books .
I still haven't got a reason .
Have nothing else to date going on to cloud the waters .
Ruling things out is often the way.
Only way I got treatment was an original very low serum B12 .
Bloods are limited at times as when very ill my bloods ' normal' otherwise .
I was referred to neurologists but All have different theories .
Due to symptoms had 2 brain MRIs .
Difficult to accept no reason found but assumed PA or absorbtion problem.
Needing lifelong b12 Injections.
Thankful regular B12 ,iron and vitamin supplements as a maintenence has given gradual but real improvements over 5 years.
'Proof of the pudding '
On no other meds. Apart from otc pain relief for varying degrees of head pain and aching joints.
Do keep copies of blood test results.
Do keep a diary.
Do carry on getting every test offered
I used to keep pain killer charts .
Symptom charts .
Memory task charts
No real patterns emerged .
No rhyme or reason at times .
Medics not interested in my notes . At one stage told not to bring them.
Tried to medicate me for ? Mental health problems many times .
I pointed out every time the fact it simply demonstrated how mentally strong i am dealing with alot of this alone !
Especially when on many occasions not believed .
I was reliving my daughters struggles in not being believed but this time as the patient not carer.
She also surprisingly at times did not get mentally ill.
Family history and diet never asked for but given.
Notes :
Useful to see how far I've come on days of frustration or poorly periods .
Ax you can see a minefield .
Common elements but also very I dividuual presentations.
Probably due to genetic traits and what we are personally predisposed to when our body under 'attack'
Thank you, yes referred initially for mri 2 years ago and tested for MS. All ok.
My thyroid levels are all good , mine is an autoimmune condition, first thing I looked at. I felt well for a time but then started getting all these symptoms so went to endocrinologist and optimised my thyroid meds.
I do keep a symptom diary
Had tests for intrinsic factor- negative
Both haematologist and new neurologist sceptical of B12, one saying I shouldn’t have symptoms still if I was having injections and the other said high b12, no anaemia and no disturbed reflexes! But agreed that if injections helped then ok with having.
A whole host of bloods were done when I first saw them in June, 10 vials! This was having B12 injections once a week at this point. I wanted to carry on EOD until my symptoms stopped improving but GP was uncomfortable as some GPs in practice were against it.
So… what should I ask to be included on these follow up bloods after 4 months free of B12? Just want to make sure everything is covered as I feel so awful again.
I urge UK forum members to track down local B12 deficiency guidelines used by their ICB (Integrated Care Board) or Health Board and compare them with NICE CKS link.
If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which b12 deficiency guidelines they are using and ask for a link to them or copy of them.
Serum B12 will be high on supplementation. How much and what type of B12 is there in the B-complex that you are taking?
Often, the only sign of B12 deficiency is neurological problems and not anaemia and your problems are definitely B12 deficiency related. Generally, this should be caught in the MMA test, so do let us know the result of the MMA test.
Since you are feeling better with B12 injections, you should take them. 2 month frequency with hydroxocobalamin injections is pretty standard and 3 months is really a stretch for many, so I think you should continue with 2 monthly injections or even monthly injections if it keeps your symptoms at bay.
Orals don't work well for all, especially methycobalamin. It does not work well for me and there are even studies that show it. Oral Cyanocobalamin seems to be better.
Best is to just take the B12 shots and forget about this B-complex. Deficiency of other B-vitamins is rare, except perhaps folate which you can get tested for or take it separately.
Your doctor seems better informed than many doctors are on issues pertaining to B12 deficiency, including inverse relationship with MMA and homocysteine. It's important to note that some biomarkers can confirm diagnostic hypotheses regarding B12 deficiency, but none are able to disconfirm hypothesis of B12 deficiency. So, in your case, lower levels of these biomarkers on retest during periods of treatment with B12 will tend to confirm B12 deficiency. Higher levels after cessation of B12 injections will tend to confirm B12 deficiency. But the opposite results will not disconfirm B12 deficiency.
A recently-posted link to a very good medical-journal article helped me by summarizing what is currently known about diagnosis and treatment of B12 deficiency.
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