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B12 is low but doctor is reluctant to help me :(

(29 Posts)
AnotherRandom Wed 11-Dec-13 13:32:36

Hi all. Sorry this will be long and possibly boring lol.

I have suffered with anaemia since the age of about 12-13. Always treated with iron tablets. Would work for a while then I would be back at square one with anaemia again.

Having just finished a course of tablets I still felt extremely tired amongst other symptoms such as hair loss, fatigue, palpitations, aching back, pins and needs in my arm/hand, headaches, forgetfulness and an extremely low mood.

The doctor was saying it could be due to the weather change hmm but sent me for a blood test.

Results came back and my B12 level was at 220. The receptionist said it was borderline and the doctor would call me back. I got a call on her behalf and they told me everything is okay and that my symptoms are due to mild asthma? I have never in my life had these problems with my asthma!

I asked for a call from the doctor who was adamant my levels were normal according to the UK's range of 180-900. She said there was nothing she could do as I am within the normal range. She also told me the ranges vary from country to country and that elsewhere in Europe anything less than 300 is deficient.

She then told me my levels have improved since May when my B12 level was 183 hmm I asked her why there was no mention of this as it is considerably low in the normal range and she got quite short with me on the phone saying there was no need to mention it as I am in the normal range and therefore don't need any treatment.

She is going to check my bloods again in Feb but what on earth do I do until then? I feel absolutely miserable and feel like laying down all day as I feel weak and tired sad

IndigoBarbie Wed 11-Dec-13 21:16:01

What foods are you craving at the moment?
You may possibly be short of magnesium. a friend recently tested with a food sensitivity/allergy testing called Asyra and it showed that her bowel/digestion was not functioning as best as it could be - and that once this was sorted out any absorption issues would clear up. This has proven to be the case, as she can now tell her nutrition is being fully absorbed by the body as her nails are growing super strong...something that was not happening before.
Do you eat many cakes or sugary products?

Helspopje Wed 11-Dec-13 21:17:23

are you on hormonal contraception as, if so, this can affect the assay used in the UK hence the alternative lower cutoff

pombal Wed 11-Dec-13 21:21:15

Hassle them for a B12 injection. It won't do you any harm.

Tell them you are half Swedish or French or something and need your levels to be 300 smile

PacifistDingDong Wed 11-Dec-13 21:26:52

Are you vegetarian?

You should take Vit B tablets in the first instance to see if that brings your levels up and whether you actually feel better.
Your dr is right - your levels are within the normal range. Level vary not so much from country to country but from lab to lab and you should go by your local normal values.
If you levels go up with an oral supplement, then you are should aim to increase your Vitamin B12 intake in your diet (meat).
If they don't go up, consider retesting including a screen for malabsorbtion like Coeliac's disease or a problem with intrinsic factor in the lining of your stomach which may suggest Pernicious Anaemia.

FWIW, investigation tiredness or lack of energy medically and with blood tests is ofter very fruitless because it is usually due to many different factors conspiring against you: diet, exercise, stress, mood, sleep - both amount and quality - all play a role.

I cannot tell of course, but I'd be surprised if your Vit B12 being higher, would make you feel better tbh.

RubySparks Wed 11-Dec-13 21:32:23

Did gp test your thyroid levels too? Sounds like symptoms of under active thyroid.

PoshPenny Wed 11-Dec-13 21:56:30

ask for a copy of all your blood test results. hateful gps fobbing us off. I don't know enough, but have suffered the same thing of being told I'm within range, therefore there isn't a problem even though there patently was - pretty much the same symptoms as you, but my wonky result was very low iron stores, but not actually anaemic according to my gp.

I have found a very good supplement called hema-plex which appears to be doing the job for me, and perhaps you might wish to do some research yourself as to whether you might benefit from taking some supplements.

Have you ever had a test for coeliac disease? Your problems may stem from problems in your gut which stop you absorbing vitamins and nutrients. just a thought.

RockinD Thu 12-Dec-13 12:21:45

With a B12 level so low in range ( it should be over 500 at the very least), you are in urgent need of supplementation, but your GP will probably stick to the NHS line of ‘you’re within range so there’s nothing you can do’.

While you argue with him about this and whether or not you have pernicious anaemia, which he should be testing for with a B12 result that low, get yourself some of these http://www.amazon.co.uk/Jarrow-Formulas-Methyl-B12-1000mcg-Lozenges/dp/B001F0R6I8/ref=sr_1_4?ie=UTF8&qid=1386850675&sr=8-4&keywords=jarrow+methyl+b12 and take one a day.

You dissolve them under your tongue (they taste fine) and are absorbed through the mucous membranes in the mouth, so bypass any malabsorption issues in your stomach and work effectively to bring your levels up.

You cannot overdose on B12 – if you don’t need it, you will just pee it out again.

Have you had your folate checked as well?

AttilaTheMeerkat Thu 12-Dec-13 13:31:03

Have you ever had your bloodwork checked with regards to your thyroid gland?.

I would now be asking your GP for a referral to a specialist like an endocrinologist. Many GPs can mess around in ignorance.

AnotherRandom Thu 12-Dec-13 13:33:49

Thank you for your replies.

indigobarbie I am not craving any foods at the moment. I normally get cravings when my iron stores are low but I am ok at the moment.

Helspopje I am not on any contraceptive and never have been.

pacifistdingdong I am not a vegetarian and I know I eat plenty of meat, fish, eggs and dairy products for my diet not to be the cause of my low b12 levels. Never in my life have I suffered from these symptoms and I have not changed anything in my life (diet, lifestyle etc) to effect my tiredness like this. My daughter is now sleeping through the night and has been for 3-4 months and yet I feel even worse during the day. I literally want to nap all the time.

pombal my doc said she won't do injections unless in 2 months time my b12 has dropped sad

rubysparks I think she has tested for thyroid before and perhaps also in this last blood test but was told my results are okay.

poshpenny I may ask for a copy of the last few blood tests as I feel the doctor is not telling me important things eg like in may this year how my b12 levels dropped to 183!! No recommendation or guidance to tell me it's so low and to adapt my diet or supplement my diet. No mention at all. I have never been tested for coeliac disease.

RockinD I know my levels should be higher and had to ask my doc what to do and she said google foods high in b12 and eat them lol. I am concerned that I have not been investigated to find out why my b12 stores are low when my diet is fine? I will check out that link thank you so much.

My folate levels came back as 5.7 but don't know what unit it's measured in and what the normal range is for it. My ferritin levels came back as 25?

AnotherRandom Thu 12-Dec-13 13:36:21

Atilla- I might ring the docs to find out if actually my thyroid were checked for in the last blood test. My doctor is very unhelpful sometimes and likes to minimise my symptoms as no big deal. It really infuriates me but because she is quite a strong character, I feel a bit intimidated by her!!

AttilaTheMeerkat Thu 12-Dec-13 13:48:56

I would look into changing GP practice; its a far easier process to do these days.

BIWI Thu 12-Dec-13 13:50:23

I'm no doctor, and we should all be aware of Dr Google, but the symptoms of Coeliac disease do sound like the list of symptoms you have given.

How about cutting out wheat/gluten from your diet for a few days, to see if there is any improvement?

gd1976 Thu 12-Dec-13 13:55:30

Your symptoms sounds so similar to mine and I have just been diagnosed with under active thyroid (and anaemia) so I would definitely insist on having your thyroid bloods taken

AnotherRandom Thu 12-Dec-13 13:58:25

It's so confusing because I've just looked at hypothyroidism and all my symptoms are listed there.

I forgot to mention as I didn't think it was related but I have lost all my sex drive and I'm always cold!!! Sometimes I start sweating even though I'm not doing anything physical and I'm feeling really cold! In the evenings we have the heating on yet I'm sat in long sleeved tops, a fleece and blanket because I'm cold.

Do I book another appointment at the GP and ask for more tests? I think she may get pissed off with me and tell me there is nothing she can do!

noddyholder Thu 12-Dec-13 14:39:57

I am on the injections and have to supplement with sub linguals too as it isn't enough. The UK is woefully backward at treating this and recognising it. I have permanent damage in one foot as it was left so long my levels are v similar to yours Hope you get treatment soon my hair fell out very tearful and just overwhelming exhaustion and tingly hands and feet. Also had a sore mouth/lips at times which is apparently classic and should alert doctors to at least test

mercibucket Thu 12-Dec-13 15:16:05

can you see another gp?

phone and ask receptionist what your thyroid level was if you don't want to speak to gp

sounds like thyroid to me too tbh

for b12 you can always self supplement

you need more iron as well btw

AnotherRandom Thu 12-Dec-13 19:45:52

noddyholder that is awful you have permanent damage because of this. The UK's attitude and lack of awareness about b12 is appalling.

mercibucket at my surgery, if my doctor is in surgery I am not allowed to see another doctor sad my doctor told me no action needed after results because everything is fine! So I still need to take more iron tablets? Oh and I rang about my thyroid level, the receptionist said it was 1.96. If anyone knows what that means please help smile

PacifistDingDong Thu 12-Dec-13 19:58:28

You need to have a proper conversation with your dr - no amount of googling or listening to our individual experience will be enough.

Iron is usually measured as ferritin which is your iron stores.
This is not related to Vit B12 or Folic acid (which are linked to each other).
It is entirely possible to be low in one or the other and not be anaemic.
Lots of these symptoms are similar of an underactive thyroid.
Coeliac's Disease can cause low Vit B12 levels, but these levels can also be low without CD.
Or a lot level depression.
Or any number of other things.

If nothing else an orc Vit B supplement might be an idea or even a multivitamin for a few months.

I am sure all of this is confusing (I know it can confuse me...) and unfortunately some drs are not very good at communication these rather complicated things.
Of course you can see another dr at the practice - the days of personal lists are long gone AFAIK.

Beccadugs Thu 12-Dec-13 20:12:05

Hello OP, lots of good advice, it looks like,from my skim read.

You can get B12 supplement from holland and barrats, and this is what my endocrinologist out me on initially at about 4X the RDA (I don't absorb it so have injections now) so you could try this and get retested in 6 months if it's not working and your levels are still low then you can explain that you have been taking a supplement.

I also have an underactive thyroid, and I would suggest you get that checked too, as symptoms of both are similar!

AnotherRandom Thu 12-Dec-13 20:18:11

I will call the doctors in the morning and arrange another appointment. If she is no good to me I will try and get a second opinion. As I said before, my surgery do not allow you to see or book an appointment with another doctor if your doctor is in surgery. They don't allow it. So my best bet is to try my own doctor again and then tell her I want a second opinion, or tell reception I want a second opinion.

Thank you all for your advice, I will just see what the doctor comes up with/dismisses.

mercibucket Thu 12-Dec-13 22:04:44

if your ferritin is 25 that is still low. your gp wont treat it but you want it up to about 90. it makes me knackered when its that low. you can buy otc either tablets, spatone or floradix. i use sachets of spatone daily

tsh sounds good although really you need to know the t4

in your shoes i would be self supplementing then asking for a repeat blood test

RubySparks Thu 12-Dec-13 22:43:56

Thyroid sounds ok, think that is TSH level they gave you. Another thought is maybe low vitamin D? Or do you have any family history of auto immune diseases? It seems coeliac, hypothyroidism, type 1 diabetes, pernicious anaemia are all related so likely to be family members with something like that!

V4292 Sun 26-Feb-17 23:36:22

Could be worse mine was 167 and reported as no follow up required after anto intrinsic was ok. Clearly that isnt ok. I also apparently have high ferritin levels

MsMims Sun 26-Feb-17 23:57:57

Similar to V4292 I had a result of 162 which my GP was totally uninterested in.

I self supplement with the jarrows lozenges mentioned up thread.

Hope you can see a different GP to query things with OP, don't like the sound of the system your practice runs at all.

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