B12 low advice

[Goldie4]

I have being diagnosed with hypothyroidism in late Nov 2020 after having an MOT of tests to find the route of my ailments. I have not improved much since and have had 2blood tests done prior which im waiting on Endo to get back regarding latest results. However yesterday i requested Novembers bloods from my surgery and noticed they done a B12 test. It was stated Low 147 ng/L rang of 180.00-900.00. However i have never recieved this info before and never told to supplement. Makes sense as my symptoms are beyond improving and i contacted my surgery this morning in which the nurse will get ring me in the next hour. Any advice or questions i can ask or need to do please? Any help would be appreciated 😔

[fbirder]

I hope the nurse has told you to come to the surgery for a course of B12 injections.

If you have any neurological symptoms (numbness or pins and needles in feet) then you shoukd have three injections a week until the symptoms no longer improve. Then one injection every two months.

If you do not then it's three injections a week over two weeks, then every 2 or 3 months.

[Nackapan]

How did you get on?

[Goldie4]

Hi, thank you for your response. I really appreciate it. The nurse has booked me in for more bloods on tuesday, then i have to book in a week after bloods for an appointment with doctor to discuss if b12 is lower or improved from last results. I feel so weak all the time and suffer numbness in feet from time to time also. Is there anything i can do to help me feel less disoriented in the mean time ? Thank you for your help.😌

[Nackapan]

I dont understand the delay in treatment . Your b12 is low.Is it your first ever b12 ?

Have you been given a reason for repeat blood test?

I would speak to a doctor.

Tell them your current symptoms

[Goldie4 in reply to Nackapan]

Hi Nackapan, im unsure if i ever got tested for b12 before and only by chance found out by requesting a print out of all tests from November 2020 otherwise id still think i was unwell due to thyroid.I spoke to the nurse and told her a lot of the symptoms related to b12 ive being to the docs over the last 10 yrs quite regularly with and always being past to different testing and then told in feb after struggling so long it was due to early stage arthritis and it all makes sense now knowing my b12 is low. She just said she will book me in for bloods on Tuesday to see if my b12 has increased or decreased since november and then the doc will make an appointment the following week to discuss. She had my notes on screen and knew my stats but still didnt seem concerned which is worrying for me as im struggling so much to even move and breath. If i call my doc on Monday no doubt he will just say the same as the nurses seem to get more done in my surgery than the docs. Its not great either way is it.

[Nackapan]

I still think it's best to report symptoms to your doctor so treatment is not delayed The nurseschads are tied until a prescription is issued by a doctor

Take care

[Goldie4 in reply to Nackapan]

Thats so true but because of the way the surgerys are ran at the mo with covid the nurse are the only ones allowed to contact us to see if our problems are worth seen by a doctor or nurse. Apparently the docs are not in surgery as frequently and you can only book an appointment normally between 5- 7 days. Its a joke for sure. I will call reception on monday tho and voice my concerns as im really worried with all the waiting. Thank you for replying, i do appreciate it 😊

[MariLiz]

I would suggest you write all your symptoms down in a letter and send it to the surgery. That way it has to go with your medical records. Several of the symptoms you mention are neurological, and need to be treated as soon as possible. It is very common for those of us with thyroid problems to also have low B12, and be low in other vitamins too. Our vitamin levels need to be high enough for the thyroid medication to work properly too. Unfortunately, so many GP’s are unaware of the seriousness of this.

I do hope you will get the treatment you need soon.

[fbirder]

You should be able to access your records online and search them. Check out this page - nhs.uk/nhs-services/gps/onl...

Once you're registered (it may be easiest to do this using an NHS login - it only takes a few minutes to sort out). You can search all your old results.

My B12 results history

[helvella in reply to fbirder]

Only applies in England - not Northern Ireland, Scotland and Wales. (Not that I have any idea where the original poster lives!)

Far too much that appears to be UK NHS is actually NHS England only. The others might, or might not, have parallel or similar things but often different enough to cause confusion. These apps definitely do not work in the other nations.

[fbirder in reply to helvella]

DIdn't know that!

[fbirder]

It sounds like your doc is going to keep testing until getting the desired result - 'normal.

I would take MariLiz 's advice and write to the doctor. Include a copy of this - onlinelibrary.wiley.com/doi... - with the sentence in Point 4 of the Key Recommendations 'treatment should not be delayed to avoid neurological impairment.' highlighted. And this one, at the bottom of the first page 'early treatment is essential to avoid permanent neurological disability'.

Mention that you already have indications of nerve damage (your numbness) and you're worried that a delay in treatment may cause permanent damage.

Suggest that you go for a blood test ASAP and, during the same appointment, you are started on B12 injections (three a week until symptoms no longer improve). They can't complain about nor being able to fir you in for the injection if you'll be there anyway.

[Goldie4]

Thank you so much everyone for your concern and help. I have had my bloods taken this morning regarding b12 and was told my doctor will call me nxt tuesday morning with the results. I have asked if bloods are serious will he contact me earlier and was told yes. Thankfully the done ferritin, folate and a few others including the b12. Im unsure if i should still write about my symptoms as he has to wait now for results and no doubt wont help me untill then. Ive also spoke to the endo receptionist yesterday in regards to thyroid bloods etc done nearly 4 weeks ago. She said she needs to go through them and have another doc look at results before i have a call regarding them. She gave me no info regarding if they tested for vits, t3 or hasimotos. I explained i was in a lot of pain and struggling with everyday movements but there doesnt seem to be a rush wheter your well or not. Like fighting a losing battle. If i was to write to the doc what should i state? Sorry i cant even think for myself these days 😔

[MariLiz in reply to Goldie4]

Having difficulty thinking clearly can be a symptom of low B12. I was convinced I was developing dementia, as I forgot words mid sentence, and struggled with everyday tasks. Once I got my B12 levels back up, and my body began to heal, I gradually improved. It’s not instantaneous, and will take a while, depending how long you’ve been struggling on a low level. B12 is needed by every cell in your body!

[Goldie4 in reply to MariLiz]

Thank you MariLiz, i really appreciate the insite. To be honest with you i feel like the exact way for a couple of years now put it down to having a difficult baby at the time and lack of sleep. I wrote a long list of maybe 30 something symptoms i am experiencing and have been for a long time and sent them to my doctor so he has a bit more insite other than arthritis and hypothyroid that i was told with no information or help regarding these other than a low dose of levo. Just seems turning 40 has brought everything out in me unfortunately, hopefully i will have answers on tuesday and start on injections also anytime there after. Sooner the better. Thank you 😊

[MariLiz in reply to Goldie4]

If they’ve only started you on a low dose of Levothyroxine, that should mean regular blood tests every six weeks or so. After each blood test the dose is then gradually increased until you reach the amount that is right for you. When you reach the right dosage, your TSH will hopefully be around 1. I do hope your GP has arranged this treatment for your thyroid? I’m sorry to say that a lot of people just get left on the starting dose, with no follow up blood testing or dose increases.

I wish you well. I’ve been on this journey for many years now. This forum has helped me so much. X

[Goldie4 in reply to MariLiz]

Thank you for your lovely reply 😊 I have had bloods 8weeks prior to first bloods and told all was Normal, on the thyroid forum i posted my results and a lady told me my t4 is low and only because i requested the results i found out about this and also my very low b12. My endo done more bloods but no one upped my levo dose and ive put on nearly a stone since january. Im only 5ft so i look and feel a lot bigger and down about this alone. Im still awaiting blood results from feb from endo and keep chasing her secretary to be told shes waiting on a doctor to have a look at them. 4 weeks today, im going crazy to say the least and having all sorts of ailments including depression since jan. Its never ending. Im just grateful for finding this forum as it reassures me a lot in helping understand things a lot more. Thank you so much for your kind words X

[Goldie4]

I have got a form from docs today (acess) to apply for all medical records since i moved to Wales in 1999. Im going to go through them with a fine tooth comb when i have them to hand.