My B12 is historically low normal and one of my GP’s thinks it could be due to a fast metabolism. However, my mind wont let it rest and some people have on the thyroid uk forum have suggested i get tested for PA but i am not sure i fit the criteria to ask my GP again. Or may be just need a bit if a B12 supplement boost. B12 did drop from 328 to 214 within 5 weeks which i found a bit odd. I was just made aware of the change in the nice guideline that you may be deficient up to 350. I am not vegan.
Bloods -
B12 history:
17/04/2003 245ng/L
11/02/2016 272ng/L
03/02/2020 280ng/L
25/08/2021 279ng /L
08/12/2023 328ng/L
29/12/2024 214 ng/L (211-911.0)
15/05/2024 245 ng/L
Folate:
15/05/2023 7.4 ug/L (5.4-9999.0)
Ferretin:
15/05/2023 102 ug/L (10-291)
FBC: 29/01/2024
• Haemoglobin estimation
133g/L (119.0-149.0). 29/01/2024
• Total white cell count
7.40 10^9/L (3.7-10.0) 29/01/2024
• Platelet count
284 10^9/L (150.0-450.0) 29/01/2024
• Red blood cell count
4.49 10^12/L (3.85-4.9) 29/01/2024
• Haematocrit
0.41L/L(0.35-0.46). 29/01/2024
• MCV - Mean corpuscular volume
92.1 fL (82.0-100.0). 29/01/2024
• MCH - Mean corpuscular haemoglobin
29.7 pg (27.0-32.5) 29/01/2024
• MCHC - Mean corpuscular haemoglobin concentration
323 g/dL(316.0-365.0) 29/01/2024
• Red blood cell distribution width
13.1% (12.2-15.4) 29/01/2024
• Neutrophil count
5.0 10^9/L (1.7-6.6) 29/01/2024
• Lymphocyte count
1.7 10^9/L (1.0-3.0) 29/01/2024
• Monocyte count
0.4 10^9/L (0.2-0.8) 29/01/2024
• Eosinophil count
0.1 10^9/L 0.0-0.45) 29/01/2024
• Basophil count
0.1 10^9/L (0.0-0.1) 29/01/2024
I do have the rare condition HypoPARAthyroidism (Hypocalemia and PTH insufficiency). This is non surgical so could the cause could be autoimmune, genetic or idiopathic. PA can somtimes coexist with autoimmune hypoPARAas I also have TPO thyroid antibodies (Hashimotos) but with current normal thyroid. This is another condition that can PA can coexist with.
Symptom wise i currently can not tell whats what. However, i do get muscles twitches, cramps and parathesia but they are also symptoms of hypopara which i sm not yet stable.
That's news to me. I know low levels of B12 can alter metabolism but I wasn't aware that a fast metabolism can cause low levels of B12. Where is your GP getting his information from?
I really not sure where the GP was getting it from maybe just the first thing that come into his head lol I am not sure he had any other answers - I can never put on weight (unless been on certain medication). This happened with me at first with my calcium as it was only ‘a bit low’ they would say but i had hypoPARA. I think thats why I am reluctant to let things go as I have been fobbed off before and worried they are missing something.
thank you very much for this - i totally agree trying to work out ‘what symptom is what’ is a challenge for me at the moment and i may need to slow down a little. I also have histamine intolerance, OI and suspected recurring UTi’s amongst other stuff and so may symptoms ate crossing over.
In reflection like you mentioned i was thinking about a b12 supplement. But i may hold off in the first instance until the endo puts me on the active vitamin D (one alpha) which should fingers crossed help me absorb calcium much better and give me more consitancy symptom wise. That way i may have a better idea in regards to whats causing the symptoms 😊
Interesting, I also have hypopara ! Was you given a cause for the diagnosis ? I also have hashimoto's with the antibodies !
I'm not medically trained but would have thought your B12 needs to be raised via sublingal or injections. Your blood cells to me look healthy, folate is in range but looks the lower end of the scale.
They never found the cause of my PTH but told me it wasn't hereditary, I insisted they tested my siblings to find my son has it ! You might find this of interest.......... mayoclinic.org/medical-prof...
You might be able to point out the highlighted bit where it states B12 deficiency and insist you feel yours to be low. I was prescribed folic acid which masked my B12 deficiency and have suffered neuropathy as result.
Along side of the PTH I have other autoimmune conditions so your Dr and clinicians need to be vigilant with regard to your care.
If your PTH has brought your calcium in range and your no longer suffering from hypocalcemia the cramps and twitches should improve. I am fully aware of the not knowing what is doing what when you have overlapping symptoms. Have they checked you for the Aire Gene ?
Dont be fobbed off by their ignorance and be insistant.
Hi Jillymo, oh gosh wow we actually sound very similar. Did they ever test you PTH antibodies? Glad you insisted on your children getting tested!
I am still on the waiting list to see a new consultant as I asked for a transfer after my first appointment an nhs hospital. So hopefully the tests for the cause are not too far away. I did initially go private but they did the wring blood test on two occasions. They did the normal PTH which my GP had done on a few occasions instead of the PTH antibodies.
I have an appointment with a GP in just over a week as i asked for a dexa scan with having hypopara and joint pain which I am going to ask for autoimmune bloods again as my ANA was borderline a few years back.
I will take a print out of the article with many thanks and the new nice guidelines for B12 and see if he will book me in for another appointment to discuss.
Was it hard for you getting a diagnosis it has been a but if a nightmare for me?
My Hpopara was discovered in 1976 at St Marys London. I had gone in as a day patient where they did various tests and were told Hypopara and malnutrician. I wasn't medicated just told to drink lots of milk.
Some years later I became very ill and could hardly walk, I suffered tetany, twitches ect and suspected M.S. I was seen by a neurologist so I insisted a brain scan or lumbar punch to be done, I was given a brain scan.
I new something was wrong because the scan was done in Swindon but sent to Oxford for viewing, it showed I had lesions in the basal ganglia ! At first I were told I had pseudo hypopara but they later they settled for hypopara.
There was great excitement amongst the consultants as I were the only one in the area with it. I were then used as a guinea pig with them paying students to spin my blood for months in the hope of finding a cause, they suspected the kidney receptors but nothing showed up ! I was given calcium and calcitriol and i'm followed up in Oxford to this day.
I assume you are recently diagnosed ? Do note on the link I sent you it has the guidelines for Hypopara which I wasn't aware of ! Click on it and have a read, I must read it too.
It been a bloody long hard road to tread and still uncovering various other issues. All those years ago the para issue was not what I were attending St Marys for ! I suppose in those days they new very little of it hence telling me to drink milk. Due to not being treated I now have a scoliosis of my spine. I have a Dr coming out today because I dont know what is doing what and I have since been diagnosed with other autoimmune conditions which are Iisted on my profile.
Where were you diagnosed ? I hope they have explained the condition to you. I wasn't told anything which was frightening at the time, I had never heard of the condition. I had always suffered with chronic fatigue even when young . My sons bone pain was put down to growing pains it was only through my insitence he was tested and unfortunately he has the same !
If you have no joy with your Dr with regard to B12 speak to your endo to get it prescribed. I am looking into the possibility of a polyglandular issue which could explainmy diagnosis.
oh no the old saying “drink more milk” when it cant be absorbed. I bet you felt terrible.
Apart form my GP notes where hypoPARA is documented and coded a lot of consultants have been really tentative which has drove my mad and either just documented PTH insufficiency likely or has an element of hypoPARA. These comments have drove me mad. The last one in the NHS wrote “she is not have an hypoparathyroidism but does have PTH insufficiency with low calcium”. I was like what?? they are the same condition!! So i swiftly asked to be re referred to sheffield teaching hospital and think I am on the waiting list for the adults inherited metabolic clinic as I need an endocrinologist who at least understands the condition. Unfortunately, now have to wait again which seems a bit unfair as I really want to start on the active vitamin d so i can reduce my calcium dose on too many and it wont stay in normal level.
Do you have any PTH left at all. Mine is classed as ‘inappropriately normal’ as it is not responding as it should and should be going much higher compared to low calcium.
Do you use Hypopara uk charity. They have been the ones who have helped and reassured me?
Sent a request through anemia to GP this morning about b12 so will keep updated.
After the initial diagnosis at St Marys it was never mentioned again so I thought no big deal. The much later scan ect and the referal to Oxford to see a professor confirmed the diagnosis. I were also both hyper and hypo thyroid and now on levothyroxine.
I joined thyroid uk on here thinking the para issue was a thyroid problem, I had never heard of the parathyroid glands. It is the months of waiting in between apts that get you down. What your in need of is a ruddy good consultant not just any old endo. Someone who has interest in the para thyroid glands, a teaching hospital hopefully will take an interest.
Both my son and I were given calcium and the calcitriol. All you can do is wait and see what manifests. Oh joy
Got to get ready for the Drs visit but if you have any other questions feel free to ask.
Without any medical qualification to cloud things....
I would have thought a trial of either b12 injections or possibly high dose oral b12 would seem a sensible way forward which might provide some insight at no risk - other than your GP having to provide you with a trial treatment.
My GP was mean and made me take shop bought B12 sub lingual spray 1200mcg a day on the basis that whatever the cause one absorbs 1.5 %.
After 3 months my B12 was up to 250.
If on replacement it should be above 300.
I made a fuss and I am now having 3 monthly injections. Some protocols suggest 2 monthly injections. If I feel “like I am going off a cliff” energy wise in the last few weeks I add the sublingual B12 spray until I get my jab.
In the UK the protocol is not to test once on Intramuscular B12.
For vitamin B12 deficiency, the blood test typically looks for anti-intrinsic factor antibodies or anti-parietal cell antibodies, which are associated with pernicious anemia, a common cause of B12 deficiency.
These blood tests are really useful and will not them down for when i discuss with GP. So glad you managed to get the injections youshould have got them straight away!
I had shingles and felt and looked 20 years older. I was exhausted. He ordered a prostate test but I badgered the nurse to do a Full blood count. He said it was normal despite it dropping from the usualHb 150 to 120.
He told me that me and my hospital chums were playing at Drs and Nurses and that all patients had been switched to oral B12 as it is as good as injections.
At a starting B12 of 64 he should have at least sanctioned the twice weekly for a month injection starter regime to get me back up quickly.
gosh - you would have felt much better sooner I imagine he had sanctioned the injections.
I have just wrote down my request ready to submit through anima in the morning. I have referred to the updated nice guidlines (even going to copy in the link), current medical condition risks that can cause it and asking for the PA bloods.Lets see what happens.
It's only our health and wellbeing at stake at the hands of these imbaciles who need educating on how to treat a B12 deficiency. It isn't them that suffer the pain of the neuropathy because of miss managment. You have nothing to grumble about your just a babe compared to me ! 😂
I also suffer with shingles which really lays me low. I had a Dr coming out this morn to discuss my issues and to give me a shingles vaccine. I am concerned the vaccine will highten my neuropathic symptoms.
Get the swine in an armlock until he surrenders. The covid excuse is getting wearing. You should have been given the loading doses and 3 to 2 monthly injections.
Writing still a challenge as the type disappears from the right as I type.
Words don't jump about as often now but sets of tinnitus at a higher decibel .
If your B12 was measured in pg/mL and a serum B12 test they ignored all guidelines of treatment at the very low level you tested at ....as you are aware .
Also aware of the scant training G.ps receive on B12 issues is not surprising but at the very least an open mind ....clinical picture ,other things eliminated then refer on ....but start B12 Injections!!!
Surly to cover their backs as well !
Did they have any other explanation of your symptoms .
( which you don't state so assumed )
I got my loading doses pre lockdown.
Our surgery at the time also sent letters out about changing to B12 tablets.
Outrageous with so little evidence of this doing anything for those with an absorbtiin problem/ PA .
I was told a dietary deficiency without asking what I eat .
( I eat meat ,diary ,veg eggs ect )
The neurologist I saw for migraines was having b12 injections himself and had read every available paper on oral b12 .
Was not convinced .
Passive absorbtiin at 1% did nothing for me ,I tried. It's on my notes.
I willed it to.
Noone wants all of these Injections .
I had severe symptoms . Including having balance issues and extreme light sensitivity with migraines.
Was told ? Anxiety
? MH on my notes? Chronic fatigue.
They didn't know
Also not aware how severe missed B12 deficiency is and what it csn do.
I was calm but tenacious .
I ended up doing a very quiet sit in to be heard and seen when a maintenence b12 injection was refused by a nurse .
To cut a long story short I was prescribed to self inject sc at home during lockdown as a neurologist(one that had b12 def. Himself by chance ) had suggested this by letter previously but it was refused by G.p at the time.
I've written many letters to the practice to heighten awareness and sign post to PAS.
I was never aware B12 deficiency couid be so devastating.
Early treatment so so important .
And the myth you will skip down the street after a few b12 injections erased .
I to date have no other condition so it was untested b12 . Late diagnosis the cause of my many symptoms
Late treatment then having to fight for continuing treatment at a frequency to keep symptoms at bay totally unacceptable .
I'm currently receiving my b12 prescription ' off licence ' to inject at home to save nurses time . Sc works just as well ive been doing this for over 3 yesrs now.
Still have the IM at the surgery .
To keep my face in and to cover all.
To date IM does not last longer than Sc
Doesn't make sense but is the case.
Do bear that in mind in your plight for treatment you need 🤔
Also spread the word with your background .
I continue to do so .
Hope you get what you need and then csn get on with your life in the best shape possible .
Thank you. My GP replied without seeing me “Well you don’t have a swollen red tongue and neuropathy, do you?”
Right a GP has replied and has agreed that my levels are borderline in relation to nice guidelines. Suggested supplement b12 for the next couple of months and re test B12 and then further specialist tests if needed and let me her know what i thought.
Mentioned happy to do that plan but that the specialist tests needs to be done before commencing b12 as they will effect result. Does this sound right? Will await the reply.
Any advice on recommended b12 supplements that are good?
They already have your low level result so sounds like she wants to see if you absorb the sublingal B12. If it were me I would request a trial of injections to see how you get on. He seems to be listening which is a bonus. 👂
maybe its worth doing the oral just to see if i can absorb it but still waiting for reply about the antibody tests. like you said may give me a chance to see how my symptoms improve.
i was expecting a no from my gp but fingers crossed she has listened as a starter and the door as been opened
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Blood results as requested on my other thread
Advice needed
Low ferritin, vitamin d deficiency and 'grey area' B12
