So frustrated blood tests b12 and vitamin d - Thyroid UK

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So frustrated blood tests b12 and vitamin d

autoimmunekate profile image
23 Replies

I paid for medichecks test last week and showed I was quite deficient in b12 and vitamin d which explains a lot however had bloods done at my GP on Friday and just found out all my results are fine how is that possible? Any ideas in so frustrated

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autoimmunekate profile image
autoimmunekate
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23 Replies
hunny59 profile image
hunny59

Did you get a printout of your results from your GP or did they just tell you they were "fine" or "normal"?

autoimmunekate profile image
autoimmunekate in reply to hunny59

They said they were 'normal' on phone I feel so annoyed

autoimmunekate profile image
autoimmunekate in reply to autoimmunekate

There was 5 day between tests

hunny59 profile image
hunny59 in reply to autoimmunekate

GPs are notorious for saying everything is "normal" or "fine" when they're patently not. Ask the surgery for a printout of your results and then post them on here. My guess is that they'll show deficiency as well

autoimmunekate profile image
autoimmunekate in reply to hunny59

I have rang and asked for a copy of my results, the receptionist said they would need to ask my GP for permission and will get back to me tomorrow

hunny59 profile image
hunny59 in reply to autoimmunekate

God forbid they should actually be helpful ... ;)

SlowDragon profile image
SlowDragonAdministrator

Get a copy of the actual results showing actual figures

humanbean profile image
humanbean

Have you shown the medichecks results to your doctor? If you did, what was the response? You need testing for pernicious anaemia, and whether or not it comes back positive you need injections to repair your B12 deficiency. You should have regular B12 injections for life based on that result.

Have you joined the Pernicious Anaemia Society Forum on HealthUnlocked? If you haven't you should do. They can give you lots of help on the subject of your B12 and folate results which are both awful.

healthunlocked.com/pasoc

You have to join the community in the same way you joined this one. You can join as many HU communities as you want.

autoimmunekate profile image
autoimmunekate in reply to humanbean

Yes I showed her results-said finger prick testing not accurate

humanbean profile image
humanbean in reply to autoimmunekate

As SlowDragon said above, you need a copy of the results the NHS testing produced - the actual numbers and the reference ranges. You need evidence to allow you to compare the results from finger prick testing and the NHS testing. Just dismissing your tests isn't good enough.

scorpiojo profile image
scorpiojo

b12 at that range in Essex is "apparently"'fine... It's just scrapping by... So you could need to be at the top end or past top range... At 94 the GP said I was ok nothing to worry about lol 150 is bottom of range... I often wonder if I were having labour pains would they say let's wait to see the head!! Thank god I am past all that and for Google god that brought me to here... Good luck and you may get more sense here than at any GPs x

autoimmunekate profile image
autoimmunekate in reply to scorpiojo

Out of interest what did you do next? after you were told you had nothing to worry about?

scorpiojo profile image
scorpiojo in reply to autoimmunekate

I decided as you can't overdose to inject myself with it b12... I've done it 9 times now.. It's a bit daunting and I still haven't got the technique quite right! But it's never hurt anymore than at GPs so something to be happy about... However, I decided I didn't want to row with a GP over something that wasn't cancer or life threatening (I realise that it's an important health issue if left) but I could try and resolve myself via tablets or b12 injections myself... Plus, I don't want to keep going down there sitting with people with germs, colds and coughs wasting god knows how long in the waiting room, if I can manage it myself... Don't get me wrong, I think it's totally wrong they are not educated enough, they don't want to treat you via symptoms, because if they were educated they would know, once you supplement a blood test is useless, so should inject via what a patient tells you they need... (Because you can't overdose) ... But as you will know the stress of the fight depletes any b12 you have and you are so unwell you just don't have it in you.. I won't be leaving it at that once on form tho... Because while I can afford and the stuff is available to buy, and I got my head around injecting, and don't want to sit and wait in their waiting room... It doesn't mean others can or should have to Grrrr x

shaws profile image
shawsAdministrator

According to the above you have an Autoimmune Thyroid Disease also called Hashimotos, which is the most common one. The fact that you have antibodies inform us you have hashimotos.

Your B12 is far too low - new recommendations to prevent neurological damage is around 1,000. All of the ones starred you are deficient and your TSH is high too when the aim is 1 or below.

Never phone for results - mistakes can be made. Receptionists too busy so always get a print-out for which you may have to make a small contribution for paper/ink. Mine doesn't charge.

Your Free T3 seems to be high - did you leave 24 hours after taking your dose of thyroid hormones and the blood test and was it the earliest possible? Did you also fast before the test - as is recommended.

autoimmunekate profile image
autoimmunekate in reply to shaws

Well I've just seen my GP who said my tsh level is 2.91, my vitamin D is 44 and B12 was 180. She said I should take a vitamin D vitamin and that finger prick testing isn't as accurate as taking blood. I asked why I still felt lousy she said probably as working full time!! bare in mind I'm 28! where do I go from now? I'm still getting pins and needles, aches and cramps in legs and swollen tongue not to mention exhaustion.

autoimmunekate profile image
autoimmunekate in reply to autoimmunekate

Yes I fasted and hadn't took my thyroxine shaws

shaws profile image
shawsAdministrator in reply to autoimmunekate

That's good as some members are still unaware that this gives the best outcome for us, the patients.

autoimmunekate profile image
autoimmunekate in reply to shaws

Actually I had GP test at 4pm Friday where I had eaten and had meds but I fasted and hadn't took meds for medichecks one not that they'll test me again now! Useless sorry rant over

shaws profile image
shawsAdministrator in reply to autoimmunekate

Don't worry, we all went through this period of adjustment, i.e. trying to improve our health without the GPs input. Our TSH is highest in the middle of the night and drops throughout the day, so a test at 4 p.m. your TSH would be lower than 9 a.m.

I'm sure many members know more than most Endos/doctors who've been instructed only to take TSH and T4. Some just take TSH. You state above:-

I'm still getting pins and needles, aches and cramps in legs and swollen tongue not to mention exhaustion" -

all clinical symptoms. I would definitely follow-up Humanbean's suggestion that you join the P.A. Society. Swollen tongue etc is a clinical symptom. It is also a serious condition and I have both P.A. and Hypo. My own mother had P.A. and died through her doctor's neglect as both my sister and I believed doctor's knew everything about common illnesses but that experience changed our whole outlook.

You will find this link very interesting:

thyroiduk.org.uk/tuk/testin...

autoimmunekate profile image
autoimmunekate in reply to shaws

That link was very helpful-how dod you go about getting tested for P.A?

shaws profile image
shawsAdministrator in reply to autoimmunekate

This is info from the PA Society and it would appear that people with this problem have similar experiences to those wondering if they have a thyroid dysfunction:

pernicious-anaemia-society....

SeasideSusie profile image
SeasideSusieRemembering

autoimmunekate Humanbean has given advice about your B12 but your Vit D is dreadfully low, nothing 'fine' about that at all. You need to get that up to at least 100. Supplement with D3, I'd start with 20,000iu daily for about 4 weeks then reduce to 2,000iu daily. Retest after 3 months to see where your level is then and adjust dose if necessary. Also take K2 as well. D3 aids absorption of calcium and K2 directs the calcium to bones and teeth rather than arteries and soft tissues.

scorpiojo profile image
scorpiojo

Why does that say Carbon m poisoning YIKES... I thought that came from boilers?

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