I posted before my trial off B12 and now I’m posting recent bloods and diary of symptoms. I hope that someone can look over them to help me. I fear that they aren’t going to reinstate my b12 injections.
hope it all makes sense
History
Diverticulitis diagnosed 2018
Hashimoto’s diagnosed 2019 Levothyroxine 100 mcg
Pre diabetes 2019
Vitamin D deficiency 2019. D3 4000 Plus k2 and magnesium
Folate deficiency 2020. Folic acid 5mg for 3 months
Symptoms 2020
Thyroid UK suggested taking B complex
Gluten free 2020
T3 added April 2021. Liothyronine 15 mcg
12/6/23 6th injections loading doses then every 3 months
3/7/2023 ish another gp agreed loading doses until symptoms stopped improving then every 2 months
5/7/23 1st of 2nd lot 5 in total - Yet another gp refused to keep giving
Total 11 injections eod/every 3days with 3 weeks gap in between
2x week for 2 weeks
Last B12 injection after 1 a week for 2 weeks 15th August 2023
17 injections
So referred to haematologist
Dr Kishore Haematologist - trial of no B12 keep up diary of symptoms
August 2023 last injection
Pins and needles much better just slight just fingers and feet
Head left bottom
Hand tremor much better
Heartburn short episode
7 weeks steady increase in symptoms
Pins and needles worse
Head
Some numbness ****
Hand tremor worse
Fatigue
Pain in fingers
Really Sore mouth *****
Really sore tongue see photos *******
Hair changes
4 months + off B12
Fatigue - so tired
Pins and needles ********stronger and wider body parts face, back, arms and legs
Numbness fingertips mainly thumb and first and further down , feet worsened, face
Hand tremor ******getting worse
Internal tremor **** getting worse
Breathless
Coughing chronic
Gut cramps Persistent Abdominal pain Low gut bloating
bad left diverticulitis 6 am and late at night
Nausea intermittent
Toilet too often or constipated
Heartburn every day
Left side Lower back pain
Persistent Sore mouth all the time sometimes burning, ulcers and sore tongue all the time
Cold
Cold hands and feet (feet worse)
Foot pain burning
Joint pain fingers
Nails longitudinal ridges
Repeated paranychia finger nails and toes
Word/name finding
Memory
Bruises unexplained
head top pain in eyes face
Dizziness
Fast heart rate on slight exertion normal resting HR 56/62 to 110+ slight exercise
skin and eyes more sallow pale yellowish tinge
Chest pain
August December
Serum b12. >4000. 1118. 197-771 pg/ml
Active b12. >128. >128. 25-108 pmol/L
Folate. 18.5. 5.01. 3.8-26.8 ng/ml
Ferritin. 79.3. 13-150. Ug/L
MMA. 5.5 0.12. umol/L.
Homocysteine. 11.1. 4.4-13.6 umol/L
Haematocrit. 0.36. 0.37. 0.36-0.46. L/L
Haemoglobin 123. 122. 120-150. g/L
MCH. 29. 28. 27-32. pg
MCV. 85. 84. 83-101. fl
ESR. 20. 0-19 Mm/hr. May 2023 was 9
Serum kappa 20.96. 3.3-19.4 mg/L
free light chain
B2. 1.7. 1.1-2.5. mg/L. Realised after that oat milk
Fortified with b2
seeing haematologist tomorrow and obviously really disappointed that results don’t match how I feel. Any thoughts would be helpful.
Written by
Fluffyone
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Yet again someone let down by the medical community. What you are going through is totally unnecessary. IMO a trial of no B12 is totally stupid. What reason did your haematologist give for it.
Withdrawing B12 treatment from someone who needs it could put them at risk of permanent neurological damage eg SACD sub acute combined degeneration of the spinal cord.
You can’t fix the symptoms of B12D just by getting your levels up briefly. You need ongoing every other day injections until you no longer improve. It can take a long time. This is why many of us self treat.
Sometimes we have to 'try to educate' these so called medical professionals which is not always easy because they dont like to be corrected. In fact when I tried to correct my Gp she said our relationship had broken down and passed me onto another just as useless Gp.
Even my haematologist didn't have a clue how to treat the condition, yet she is a top leading London consultant !
You could insist they abide by the guide lines or you could print this link out and send to your surgery manager ......... cuh.nhs.uk/news/expert-call...
Re your GP Jillymo, exactly the same happened to me and he wouldn't listen to what hospital advised either. In his mind he was 100% right! Turned out he was 100% wrong!!!
3) Local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. May also be worth looking at ICBs Macrocytic Anaemia guideline.
Your haematologist should be aware (but some might not be) that delayed or inadequate treatment of B12 deficiency can lead to damage to spinal cord. Talking about this may make the doctor pay more attention to you.
Maybe have a copy of this article with you.
PAS article about SACD, sub acute combined degeneration of the spinal cord
This may come under strain when a patient starts asking questions and being assertive.
Some doctors (from my personal experience) struggle to cope with assertive patients.
If you are concerned that the discussion may be challenging, might be worth
1) having a supportive friend/family member with you, someone who will speak up for you if needed (helpful if they have read about B12 deficiency)
2) asking if you can record consultation.
Doctors may be unhappy with the idea.
Point out symptoms such as brainfog, confusion, memory problems, hearing issues, fatigue, pain....any symptoms that affect your ability to listen/discuss/understand then you would have grounds to ask for disability reasons. Worth putting request in writing so you have a record of it.
I fought for years to get treatment but failed and faced with increasing dementia type symptoms and spinal symptoms and many others, I chose to treat myself.
Some UK forum members get extra injections from private GPs or beauty salons, some try high dose oral B12 (1000mcg or more) but this doesn't work for some people (didn't work for me) and some as a last resort turn to self injection (SI). There is a pinned forum post about SI.
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.
My Haematologist told me when I tried to approach the subject of my B12 deficiency it was not her speciality. Her words were 'I am just a poor old anticoagulant consultant'.
The neurologist my Dr refered me to was arrogant enough to put his hand up to stop me from explaining my symptoms. I have a longlist of diagnosed autoimmune conditions yet the swine tried to label me with FND.
I insisted I were refered to a gastrologist who carried out an MRN. This revealed a long part of my ileum is inflammed ! Crohns disease is suspected and I am now waiting a colonoscopy for biopsie's to confirm.
MRN is magnetic imaging. My Gp informed me my B12 was low and put me on the one cap fits all three monthly injections. I were still suffering the most dreadful symptoms so I requested injections every 2 months. It was a battle but in the end my Gp backed down and prescribed every two months. I were still very symptomatic even with the two monthly injections. I were given no other choice other than to self inject.
I had been on injections for 3yrs before I had the MRN. It is the inflammation seen on my scans that is the root of my deficiency. I am at present waiting for a colonoscopy and still under investigation.
It's been a long road to try and find out the cause but hopefully my gastrologist will shed some light as to the cause.
No I’m seeing the haematologist later today, he didn’t mention it after that blood test. It was only when I got a print out that I knew. He only said that ESR was raised but at my age that was normal. When I looked at previous test in the May it was only 9.
I'm sure they will go through the kappa light chain result with you but if not please raise it, I think it is important to discuss as it's slightly out of range.
I myself had this particular test recently, although through urine rather than serum (my area only offer through urine but serum is better I understand), along with other blood tests. My doctor didn't explain why until the results came back normal. 2 weeks before I was diagnosed anaemic. Because of the anaemia she wanted to check for plasma disorders that can be caused by a range of illnesses. The kappa free light chains tests is one of a number of tests that looks for the possibility of plasma disorders.
I don't mean to frighten you but feel it's important so that it's not missed while you are talking about the B12. I know B12 was your main concern but as I spotted your kappa free light chains tests it rang a bell with me because of my recent experience. Hope your appointment goes well today 😊
I'm not exactly sure, I think it can relate to many different disorders that affect plasma. It's just something my GP said to me when I asked what the tests were for but then decided my anaemia was due to severe iron deficiency and not anything else so I left it at that.
As your result is only just over the range I wouldn't worry too much but better not to overlook it when you have the opportunity to discuss. It might be something they just want to repeat after 3 months to see if it's gone back into range. I'm making some guesses so best to discuss with your Haemo.
Yeh, he pretty much said this ‘ Elevations in the free kappa and free lambda, with a normal ratio, are unlikely to be of clinical significance and are most likely due to inflammatory responses. Elevations in a single light chain, with an abnormal ratio would be worrying’
Ah, right, that's reassuring to hear. Hopefully they are trying to find the cause of inflammation though? I'm sorry if I worried you unnecessarily. I have personally had doctors make mistakes, one that could have cost me my life as a child, so, I double check everything now and end up doing the same for those around me! Did you get anywhere, was the Haemo listening to what you said about your symptoms?
Thank you! So… as suspected with above range levels of both serum and active b12 and mostly normal bloods he said it’s not a b12 deficiency- placebo effect when I was on it. Questioning my thyroid meds. Basically said he doesn’t know did I want to see a cardiologist?
He is writing to GP to say to have 3 monthly injections. I asked for loading doses and he’s putting that in.
I think I’m going to email him back and ask for a referral to gastro re my 2 inflammation markers and abdominal issues maybe causing absorption issues. Not sure if this is a thing if I can convert to active b12? Not sure if anyone knows that answer?
How frustrating 'basically he doesn't know'. At least he was honest and didn't pretend, and is writing to your GP to get you the B12 injections. Definitely worth pursuing Gastro route as you have those sort of symptoms.
I'll be honest, this B12 thing is new to me so I won't pretend to be able to help you answer the conversion question. Maybe best to write a new post with that specific question so that it's seen more easily by those more experienced? I'm experimenting with self injection as I have good levels of circulating serum and active B12, although not at your levels. It's super confusing, sorry I can't be of help.
The only other thing I spotted in your blood results is the relationship between your ferritin, inflammation and haemoglobin/haematocrit/MVC. I see Sleepybunny brought this up already and has given lots of useful info and links that are worth following up. Although your ferritin is at a reasonable level it can show as raised with inflammation (which you have) and mask an iron deficiency so worth following up with a full iron panel (fasted in the morning, no iron supplements).
I see many similarities between us both regarding symptoms and also blood results. I like you have been trying to unwind it all. All I can really offer is empathy, pretty useless I'm afraid, sorry ☹️
High levels of B12 without any B12 injections or B12 supplements can be associated with some serious health conditions.
I would expect a doctor to check liver and kidney function, do a full blood count and other blood tests in a person with high B12 without any B12 treatment.
B12 deficiency and folate deficiency can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to smaller red blood cells (microcytosis).
If a patient has both B12 deficiency (and/or folate deficiency) with iron deficiency then FBC results such as MCV may appear normal as effects of iron deficiency can mask effects of B12/folate deficiencies.
If you suspect both B12/folate deficiency and iron deficiency, has your doctor ordered a blood film. This might show both macrocytic and microcytic red blood cells in someone who has B12/folate deficiencies with iron deficiency.
Link about Blood Film
Aimed at health professionals
It mentions that anaemia with normal MCV can happen in patients with both iron and B12/folate deficiencies.
My understanding is that high RDW means that there's a higher than normal variation in size of red blood cells.
I think someone who has both macrocytic (larger than normal) and microcytic (smaller than normal) red blood cells in their blood is likely to have a high RDW.
Have a look at Full Blood Count link in my reply above.
Do you have previous sets of full blood count (FBC) results?
Might be worth seeing what's been happening to RDW over time.
Have you had a blood smear (also known as blood film)?
Thank you, article is very informative, I’ve saved it. I’ve booked a private iron panel test. They always seem to be lower end of range and RDW always higher end recently. MCHC was just below range in 2020 and RBC was very slightly over. MCHC was below range in 2021 again 310 Range 315-345.
Is it worth waiting for iron panel results before asking for blood film, I’m assuming if that comes back normal there’s no need?
When I wanted extra investigations I used to write brief letters to GPs outlining reasons why I thought they were necessary. I also wanted a paper trail in case I needed to make a formal complaint.
GP might ask why you think you need a blood film so have some answers ready.
if you think you could have both macrocytic (larger than normal) and microcytic (smaller than normal) rec blood cells might be worth mentioning this.
You could point out to GP in conversation or letter any results symptoms that suggest iron and B12/folate deficiency eg
that RDW has been at higher end of normal range for a while (have RDW results over last few years to hand)
It's possible to get blood film privately in UK. I searched online for "Uk private blood film".
GPs sometimes won't accept results of private blood tests but a private result showing something significant should be enough to nudge them to repeat same tests on NHS.
Some forum members find it's easier and cheaper to turn to self treatment rather than continue the battle against ignorance of B12 deficiency among some health professionals.
I have pernicious anemia, have been injecting every other day for 16 months, anything else and I feel rough. I had numbness also but taking benfotiamine b1 helped resolve this very quickly.
This is only my opinion -and I'm not medically trained.
It seems to me that at one point, you had a GP who was treating you properly (following guidelines) for those presenting with neurological symptoms - until that was stopped by another GP.
The you were sent to a haematologist, who has stopped treatment entirely to see what happens. You have deteriorated. That is what happens if B12 is taken away from someone who needs it. Otherwise it would not happen.
Your hand tremor, internal tremor, pins and needles and numbness (not to mention word and memory loss) are neurological symptoms. They have reappeared, worsened.
I understand that the NHS is really struggling, but why has the haematologist left you for 4 months and not yet checked up on whether you have deteriorated, after starting this experiment ?
Perhaps the question should be not what your bloods are doing but why your hands are shaking. For this a referral to a neurologist might be a better next move. A haematologist who actually looked at you (not just your blood) might decide for themselves that this is the way to go now, so I'm hoping your appointment is face-to-face.
By the way, you mentioned "hair changes" -but did not elaborate. B12 deficiency can cause problems with hair loss, thinning or frizziness or premature greying. It has even been known for hair to return on sufficient B12 treatment - but at it's original colour !
You also mentioned "really sore tongue - see photos" but did not attach a photo. I am glad that you are taking photos: visible evidence of a condition can be very helpful for consultants, and do not take up much time during an appointment. I also have a persistently burning tongue, have had it for years, which I have fairly recently been told by an Oral medicine consultant is due to unresolved nerve damage. And is permanent.
Sleepybunny has pointed out the risk of neurological damage on withdrawal of treatment, and has given more detailed advice and useful links. Take your time, get a highlighter out and go through these one at a time. Start with a symptoms list. Keep taking photos and date them. I have taken photographs in to appointments and they have been added to my hospital records. It helps with later comparisons, too - for when you are getting effective treatment !
Was sent to neurologist from gp and haematologist. 1st one sent for scans then ruled out MS then ignored. Most recent checked vibrations and did MS tests discounted because normal vibrations and b12 levels wasn’t interested that I was on injections at the time.
Sorry to hear no luck with neurologist. I would have hoped more interest shown. Did neurologist get your brain or spine MRI done ? Electric nerve testing ?
"See photos" : I have posted photos on a previous post of some symptoms. Maybe you will see something there that you recognise personally or read replies that are familiar to your own.
Please let us know how you get on with haematologist on next visit.
Maybe film symptoms as well. I had strange movements such as periodic limb movements (jerks)and restless legs and tremors, flickering eyelids, rippling muscles etc but on some days these were intermittent
Don't let yourself deteriorate. There have been forum members who developed SACD from delayed or inadequate treatment.
I once stopped taking B12 for several weeks and it nearly finished me off.
Can they do this in primary care? I had nerve conduction tests & EMG that were all normal. I understand that these just test for long fibre neuropathy.
You might have to self-inject like the rest of us. It is not wise to let your symptom get so horrible again because you are not getting the B12 you need. The goal should be to keep the symptoms completely at bay. Very best wishes! I am so sorry to hear you are not being treated approrpiately.
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