Can anyone please help...

[Missfolic63]

The last year I've not been feeling well tired lightheaded ..the last few weeks it really progressed to no energy at all dizzy burning eyes breathless even talking.. I eventually get bloods b12 fine gp said at 256 folate 4.5 prescription for foilic acid been taking it a week feel more tired .vitamin d fine as i take it daily..I can't work I can't go out no energy can this just be folate.

[wedgewood]

It is possible that because you are a vegetarian , that you are not getting sufficient vitamin B12 in your diet . You can only get this vitamin from animal products in your diet . Meat , fish , eggs and dairy products . I consider 256 to be a low result for your blood serum reading . The bar is set very low in U.K. If I were you , I would start taking a B12 tablet and seeing if that helps your tiredness , breathlessness and other symptoms . The blood serum result can be misleading because up to 80 % of the B12 content can consist of inactive B12 which your body cannot use . An active b12 test is more accurate, but some doctors don’t order it . ( more expensive ). If taking the B12 tablets does not help your symptoms , then there maybe another reason . But that is what I think should be a first move. Keep up the folate supplementation . ( B12 and B9 ( folate ) work together . Let us know how you get on . Best wishes .

[Missfolic63 in reply to wedgewood]

Thank you so much for your reply it's very scary when your body is so weak and your GP just gives you folic acid and sends you on your way she just said low folic acid the b9?not b12 which is fine at 256 .my brothers both suffer b12 and have my symptoms I don't understand thst when I look up b12 deficiency I have every single symtom I'm going to order it right now. I will be honest and say my diet is very bad junk food and not veg and fruit which I've now changed ..so

[Technoid in reply to Missfolic63]

Hi MissFolic,

Certainly could also be a B12 issue. In terms of nutrition you might find some helpful tips on my profile. You can get as much as 1 mg of folate if your diet focuses on healthy whole plant foods, that's 2.5x the folate RDA. Could be worth to take a look at iron/ferritin also if you have not already.

[Missfolic63 in reply to Technoid]

Very helpful thank you I'll start the b12 tomorrow then with the 5mg prescription folic acid it may help more i know i shouldn't expect a miracle but just expect to feel worse after taking folic acid ..being a vegetarian people think I'm healthy but unfortunately I need to eat the veg and fruit not junk food 😫

[wedgewood in reply to wedgewood]

B12 is the one vitamin that you cannot overdose on , so you don’t have to worry about that . I had B12 deficiency inspite of eating plenty of meat , fish etc . This was because my B12 deficiency was caused by my having the autoimmune condition known as Pernicious Anaemia or Autoimmune Gastritis . This condition needs to be treated with B12 injections — tablets do not work . If tablets don’t work for you after a few weeks , you will have to consider other possibilities . Interesting that your brothers also have B12 deficiency.

[Missfolic63 in reply to wedgewood]

I did say both brothers have b12 injections but the gp said i won't as not low at 258..

[Orchard33 in reply to Missfolic63]

PA is an impaired absorption condition. Serum B12 levels are meaningless if you can't absorb through the digestive system.

[Missfolic63 in reply to Orchard33]

I was thinking of a b12 you spray under your lounge?

[Technoid in reply to Missfolic63]

Your GP probably doesnt realize this but you can't rely on serum B12 to rule out a B12 deficiency. 258 is not great, its a bit lower than the B12 serum I was at before I started treatment/recovery.

[Cornwaller in reply to Missfolic63]

Your doctor is ignorant or worse. The serum b12 range 200 to 350 indicates possible deficiency (BMA, NICE etc) and the presence or absence of symptoms can determine the diagnosis. Therefore, given you have symptoms, the correct diagnosis is probable b12 deficiency and treatment should be considered.

This is further strengthened by your two brothers having b12 deficiency as it is well established that b12 deficiency runs in families.

The advice here on HU is excellent and I wish you well on your road to better health.

You are probably perplexed as to why your doctor has failed you. Sadly this is not uncommon. However, on the plus side it can help you gain control of your health and develop the confidence and knowledge to do so.

I am not medically trained and the above are thoughts for your consideration.

[Missfolic63 in reply to Cornwaller]

So glad I joined this site as doctors have no interest at all.now I've started this 5mg folic acid shall I just buy b12 what strength? It's pointless trying to get anywhere with my gp..

[Missfolic63 in reply to Cornwaller]

Forgot to say my mum also had iron b12 folate anemia all started mid 50s oddly so did my bothers ..now me .mum also had it when she was younger and was fine for many years after treatment in hospital no idea what treatment and she's no longer her to ask .

[wedgewood in reply to Missfolic63]

I feel like repeating what Mandy Rice-Davies ( RIP) said way back in the 60s. at the trial of Stephen Ward .. ( you’re probably too young to know this ). “Well, he would , wouldn’t he ?”

[Myoldcat in reply to Missfolic63]

Given there is an acknowledged bias against women in healthcare, I wonder what your bothers' serum levels were before they were allowed injections?

[Missfolic63 in reply to Myoldcat]

Under 200...

[Myoldcat in reply to Missfolic63]

I'm wondering whether either of your brothers see the same doctor? And have either had an official diagnosis of Pernicious Anaemia, or anything else to explain their deficiency? Your low results plus such a strong family history would suggest a high possibility that you're not absorbing B12.

[Missfolic63 in reply to Myoldcat]

My mother had Anaemia when she was around 50 years of age oddly my brothers in their late 50s I'm 60..unfortunately brothers don't have the same doctors. I remember my mus was sorted all those years ago in a hospital for many hours on a drip it doesn't seem so easy these days .

[Espeegee in reply to Missfolic63]

Your GP needs to revisit the NICE guidelines on Pernicious Anaemia and B12, they recommend a level of 500 is more appropriate, you're well below that. If you have PA supplementing isn't likely to help. My sister and mother both had PA, my B12 is just under 300, I have lots of symptoms but it doesn't even merit a comment by the GP.

[Missfolic63 in reply to Espeegee]

GPS are so ignorant about vitamins its so frustrating cause I actually feel like death some days.

[Missfolic63 in reply to Espeegee]

Do any of your symptoms include balance or virtigo..

[Espeegee in reply to Missfolic63]

I have minor balance disturbance but fortunately I don't fall.

[Libuse]

Have you had blood test for thyroid levels? Hyperthyroidism and B12 deficiency often go hand in hand

[Missfolic63 in reply to Libuse]

Yes b12 was 258 apparently good ..thyroid all others ok except the folic acid b9 .4.5 vitamin d good as I take a supplement that was 130.

[Bellabab in reply to Missfolic63]

The symptoms of type 2 diabetes are very similar. It would be wise to get a blood test for HbA1C which gives you the average blood glucose level for the past 3 months.

[Cornwaller in reply to Missfolic63]

Was it the doctor that said your thyroid results were OK? It may well be fine - but many doctors know as much about the thyroid as they do b12! If you wish to post the results members will likely have a look for you.

Best wishes.

[Missfolic63 in reply to Cornwaller]

Yes doctors said thyroid all good not that I actually have any faith in them ..

[Missfolic63 in reply to Cornwaller]

Unfortunately I can't get my blood results as I can't get into the NHS app I don't drive so have no licence. No passport as I have no need for one .

[tattybogle in reply to Missfolic63]

just go to GP reception and confidently ask for "a printout of my blood results from 'x' date " usually works

, as long as a GP has already seen them first , you have a right to see them .

[Missfolic63 in reply to tattybogle]

I'm going Friday thank you I'll do that.

[Espeegee in reply to Missfolic63]

If you have the results then post them here with the ranges. If you don't then you are entitled to a copy so you can ask your GP for them, better still, get the EMIS or MyGP app or even the NHS app and then you can look them up. You have to ask the surgery to give you access but unless you're in Scotland, they can't refuse.

[ClaireWF1346]

I've been self injecting B12 every two days since April 24 and also taking folic acid supplements (three times a week at first and now twice a week). My lowest levels were 194 and 4 for B12 and folate. I had the same symptoms as you and if my folate levels start to drop, the first thing I notice is being out of breath when I'm sitting doing nothing. It's embarrassing because I felt like people thought I was really unfit! You do need good levels of B12 for folic acid to be absorbed though, so as others have advised, a B12 supplement will be needed. What about iron levels? Low iron often comes with low B12 and low folate .

[Missfolic63 in reply to ClaireWF1346]

Thank you I've now started taking b12 I'm going to also add iron .my energy levels seem to spike really bad I dared ro think yesterday I felt a little better then an hour later I was light headed and in bed it's an unbelievable exhaustion that comes .I was signed off work for two weeks I really can't see me fit for work next week.

[ClaireWF1346 in reply to Missfolic63]

Has your iron level been checked? It's such a balancing act - B12, folate, iron and vitamin D all work together and need to be balanced. It takes some time to get the right balance for you. Listen to your body and keep a symptom diary too. I did find that my breathlessness went fairly quickly (2-3 weeks after starting folic acid) but the tiredness took much longer - I still need power naps if I've had a busy time or been mentally or physically challenged. I was working as a police officer at the time and it was awful - half way through my shift I was physically present but my mind had zoned out. I had to resign from the job as it was too much/unsafe whilst suffering this condition.

You are not alone - everyone on here is amazing and we're here to help each other. But it is a long journey, there is no quick fix I'm afraid 😟

[Missfolic63 in reply to ClaireWF1346]

I work two jobs one in a lunch hall with 250 primary school children when I was in last week I had to grab on to a table my energy levels went to 0 and felt faint light headed..I've noticed I spike I can think oh great I feel ok today then it changes sometimes after doing nothing just at home .I think I'd had this a long long time but symptoms got worse it was once the passing out feeling came I went for bloods .

[Missfolic63 in reply to ClaireWF1346]

Is b12 at 258 low as the doctors said no you don't need to tske b12 just folic acid as that was 4.5..I feel this group had better answers than a none interested doctor.

[Espeegee in reply to Missfolic63]

I think you're right, the doctors know very little about thyroid and B12 issues, it's sad more of them don't update, if we can garner the information from the internet then surely they can too? This group has a wealth of experience between all those who contribute and those who have made the journey from a lack of diagnosis and help to sourcing the help and self medicating and getting their lives back. You can buy books on B12 that will give you more information, there's one by Sally Pachalok which is very good and you can join the Pernicious Anaemia society too.

[ClaireWF1346 in reply to Missfolic63]

Each testing lab seems to have their own ranges (it should give a "normal" range on the test results?) but many people are symptomatic even when they're above "normal" range so it should be treated based on your symptoms. I recommend asking for your iron/ferritin to be checked too.

The NICE guidelines may be a useful read for you nice.org.uk/guidance/ng239/...

[Missfolic63 in reply to ClaireWF1346]

Had a gp appointment yesterday and I'm even more frustrated..she won't have it my symptoms are from.either my 4.5 folic acid or the b12 at 258 i said the low b12 runs in my family ..she said well yours isn't low.she now ordered me ro see ears nose throat specialist..it won't be that ! That wouldn't make me drained so bad and flutuate through out the day so I might feel ok for an hour then it's like every bit of oxygen has gone and I feel faint .

[ClaireWF1346 in reply to Missfolic63]

I'm afraid it's a common story - most people on here have real issues with their GPs not listening or following the guidelines (that symptoms are most important). I currently have a complaint with the health ombudsman ongoing as my GP was trying to put me on B12 tablets even though my issue is malabsorption. No tests or referrals to find the cause of my issues. I paid to see a specialist (as many others do) in Cambridge who showed me how to self inject and that's part of my life now. What are the ranges on tour blood tests? I am failing sure that 4.5 on a folate test is below the "normal" range everywhere and the symptoms of folate deficiency are similar to B12 deficiency. But with your family history, it's likely you have both. Sorry that you're joining us in this battle 😞

[Missfolic63 in reply to ClaireWF1346]

The gp agreed my folic acid is low and prescribed tablets she added but none of your symptoms would be from that your not that low ..I dared to mention b12 twice big mistake when she has her screen and guidelines that is fine.im having an Ecg Later as she doing everything to prove it's not my bloods .ears nose throat she even mentioned a brain scan I said no way I'm not having all that radioactive stuff as it isn't that ! She said well we will see how ears nose throat specialist goes and Ecg then first ..honestly so frustrating I'm drained without having to fight her taking the folic acid a week now no improvement..

[ClaireWF1346 in reply to Missfolic63]

Did she test your iron levels? Honestly, I've had/am having the same battles with my surgery - they aren't knowledgeable about this condition at all. One GP suggested I might have MS but did nothing on terms of referrals. It's like they have blinkers on. Many people on here also have battles with their GPs. It's absolutely draining when you already feel awful.

[Missfolic63 in reply to ClaireWF1346]

Still no more forward taking folic acid 3 weeks still dizzy still drained tomorrow I go for a chest xray..had ecg eyes tested the list goes on as the doctors insist my level is not low enough for my symptoms...draining. and I'm happy you took.thongs further .

[ClaireWF1346 in reply to Missfolic63]

Has your iron/ferritin been tested?

[Missfolic63 in reply to ClaireWF1346]

I'll check this now and add it

[Missfolic63 in reply to ClaireWF1346]

Ferritin says normal 52ug/L

[ClaireWF1346 in reply to Missfolic63]

The whole situation is more complex than just being in "normal" range on paper. B12, folate, ferritin and vitamin D levels all need to be in harmony to work/be absorbed properly and the absorption of these depletes the others - known as 'co-factors'. My iron was 64 (which was "normal") but the specialist I saw gave me a daily iron tablet to take which I have been taking since April 2024, to account for the absorption of the others I was taking (B12, vit D and folate). Taking folic acid whilst B12 levels are low will most probably lower your B12 levels further. I had to have 6 injections of B12 before I could start folic acid tablets (my folate was 4.0). I am no expert and not medically trained, just trying to explain that all 4 of these work together - it's unlikely to solve your underlying problem if you only take folic acid. I'm also really jetlagged as just travelled back from Thailand so I don't even know if this will make sense...

The bottom line is that most people in the UK find their GPs do not listen or understand so they end up (like me) paying to see a private specialist in order to get some answers and a treatment plan. It shouldn't be that way (hence my complaint to the ombudsman) but when you're feeling so unwell and it's affecting work - we've all been there! - it seems the only way. Stress also does not help and this whole situation is stressful too. Wishing you a solution soon 🤞

[AJackson21]

folate is low. Have you had your ferritin checked? The lightheadedness and breathlessness was iron deficiency for me and started to improve surprisingly quickly after an iron infusion.

[Missfolic63 in reply to AJackson21]

Ferritin says 52ug/L