Pernicious Anaemia Society
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Help with blood results please

Hi all, never posted before but have been reading on here after my symptoms pointed to a B12 deficiency (chronic fatigue, memory loss, balance problems etc etc) I first went the drs a year ago and was told I had low vitamin D and was given vitamin D tablets. Symptoms have been getting worse if anything so went back and had my bloods done again 2 weeks ago.

I've had my blood tests back and at the doctor's yesterday he's now prescribed me iron and vitamin D and told me to take over the counter vit C, folic acid and vit B, but I've been taking (a lower dose granted) iron, vitamin D, b complex for nearly 7 months and it hasn't made a difference. Would appreciate your thoughts on my results and if you think I should go back?

VIT D combined - 39 mmol/mol (>75nmol/L)

Folate - 5.6 (3.90-26.80)

Ferritin - 14 (13.00-150.00)

VIT B12 - 290 (200-770)

I have other results but I'm not sure what's relevant, i mean, which one is related to the folic acid? :)

I'm just so tired of it all, I'm only 36 but I feel about 90! He's said to come back in 3 months but I don't want to waste/wait 3 months if it's not just the iron/vitamin D.

Many thanks in advance for any help x

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It’s the folate result that is related to folic acid. None of your results are good for someone who has been taking supplements.

I would definitely see your doctor again and explain your concerns. It can be that your issue is to do with absorption via your digestive system. There are injections for low B12, and it might be worth having a look at the Pernicious Anaemia Society website. You will find a full symptom list on there.

Do you have digestive issues, IBS , Coeliac or Crohn’s disease?

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Hi MariLiz, thanks for your reply. I will make another appointment, it's making me really anxious now. I don't really have digestive issues, possibly mild IBS with bloating/constipation etc but I don't think Coeliac or Crohn's.

I've just joined the PAS website so I can download the info to take with me, it's quite confusing and I feel I will probably get upset/confused.

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How much VitD were you prescribed and what was your result before supplementing ? Also how much iron have you been prescribed ? GP's often prescribe too little to improve matters as your results show !

You need to be taking at least 5000 IU's D3 along with the co-factors Magnesium and VitK2-MK7. When taking VitD - calcium uptake from foods is improved and the VitK2-MK7 directs the calcium away from the arteries and soft tissue and into the bones.

I think it would be advisable to take B12 alone in the form of a lozenge that dissolves under the tongue - Jarrow Methylcobalamin B12 5000 mcg and 1000 mcg available from Amazon are often suggested. i take them myself in between weekly injections.

Are you a Thyroid sufferer - has it been tested ?

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Hi Marz - i had bloods done last year that showed i was deficient in Vit D (i didn't think to ask for the results unfortunately) so I was given 20,000 to take once a week for 4 weeks and then told to take over the counter ones which i did - think it was 4000. When I went back in March, my results for the Vit D had gone in to the normal (but still low imo) range so doctor said the 4000 was too much so I started taking 1000 and obv that wasn't enough as i've gone right down again. He's prescribed the 20,000 again for 4 weeks then once a month.

Unfortunately, my other results and tablets are back at home so can't give exact details for the those.

I did have the TSH levels tested and they were normal i think but in the low end, the Dr didn't mention anything to do with the Thyroid though?

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No - Docs rarely do know anything about thyroid so it is rarely mentioned. The TSH test is Thyroid Stimulating Hormone which comes from the Pituitary gland and tells your thyroid to produce T4 - a storage hormone - which MUST convert into T3 - a hormone needed in every cell of your body. So you can see what I mean with the inadequate testing. Also the most common form of thyroid problems is Hashimotos - so yet again the anti-bodies need to be tested and rarely done in the NHS. Anti-TPO and Anti-Tg are the ones to be tested.

Normal is an opinion and usually means in range - but it is where you are in the range that is key. The TSH needs to be 2 or under and the FT4 and FT3 in the upper part of the range given.

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

The above link takes you to Private Testing done in the home. Medichecks have a special Offer on Thursdays - your lucky day. With all the NHS cutbacks it is the only way to have complete and correct Thyroid testing.

Low vitamins are linked to low thyroid due to absorption issues. You check out the links below to learn more about VitD ... VitD needs to be around 100 if in the UK - 60 if elsewhere. I live in Crete so we are ng/L - and yes I still need to supplement VitD :-)

grassrootshealth.net

vitamindcouncil.org

Always obtain copies of all blood tests so you can monitor your progress. They are legally yours !

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I didn’t mean to worry you when I mentioned the digestive issues. It is just that they can be a reason for the low levels.

As Marz has told you there are some better ways of supplementing those vitamins that are low. Hopefully you won’t need to use these if your GP is a lot more proactive in helping you.

It’s a good idea to take someone with you to your appointment, but if you can’t do that, take some notes with you. Things you want to mention, questions you want to ask. It helps a lot when you are struggling with the foggy thought processes that come with this problem.

Very best wishes that you will feel better and your doctor will listen to your concerns.

MariLiz x

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do you have neuropathy?

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Hi gg317 Yes I think so, the memory loss being the worst. I forgot my best friends dad's name the other day, I've known him since I was a baby! :( I also get pins and needles in my feet, my eyes constantly feel like I've got a film of fog across them, night sweats and dizziness/balance issues.

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my b12 was 215, and I have all your symptoms less the night sweats, they have resolved but I have had my b12 injections and am not better. Not as sweaty, but that may be due to diet changes...im at that AGE. have you had a neuro exam?

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Did you Dr just give you the B12 or did you have to ask for it? I haven't had a neuro exam, should I ask for one do you think?

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I had to ask for the test AND the injections. I wish I could write my own scripts, Id probably be ok by now..i have symptoms for at least 8 years...maybe longer if I really CAN think back.

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Ive seen posts on here where folks that were vegetarians with low b12 started taking tables and their numbers raised significantly. They did not have absorbtion issues.

I on the other hand took a b100 with 100mcg of b12 plus all other b vitamins and a multivitamin with 120 mcg of b12 for 16 months. My level went from 169 to 246. And i felt worse. I had been given nitrous oxide, laughing gas, between these two reading. At the time i did not know laughing gas inactivates b12.

Regardless, the improvement should have been dramatic, others post levels improving by 400-600 in like 3-6 months.

I think You could have an absorbtion issue unless the amount if b12 you are taking is in the rda of 2.4 to 6 mcgs.

I FINALLY was diagnosised with h pylori. H pylori effects b12 and iron. Please get tested for this if only to rule it out.

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Thanks everyone for all your help, will hopefully get another appointment tomorrow so will report back with how I get on. X

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I think you need to ask your Dr why all the levels are so low. It is good that he has recognised they are low but he must investigate the reason for the low levels. I think you need to ask him if you have an absorption problem and suggest he tests you for Coeliac. You mention above that you have IBS. This can sometimes be misdiagnosed CD. Low iron and low vitamins and "not feeling right" are key symptoms. Not everyone who has CD has typical/known bowel problems of the runs or suddenly loses weight. Some of us are "silent".

I am speaking from experience - I had low vitamins and low iron and spent 3 years taking a variety of prescribed supplements to get levels up. It was only when I changed Drs and I asked "Why?" that the Dr finally had a lightbulb moment and tested for Coeliac. I was shocked at the diagnosis as I didn't think I had gut problems. Though I had IBS years before. I was ill for 3 years because my Dr just gave supplements and didn't investigate the cause.

Take a look at the website Coeliac UK - there is a lot go help and information about symptoms, getting diagnosed etc

Good luck finding out what is going on

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U really need to ask doc why all levels are low, there might be an underlying absorbtion problem.

It’s good if he can run some tests to find the cause.

All the above mentioned need to be in good range as any 1 low will make u feel unwell.

B12 you might need injections but if you start injections then blood results for B12 will be skewed so better to be retested before starting. Same with others.

Doc should have given you Vit D 25,000iu ampules taken twice not once a week for possibly 4-6 wks (12 ampules) then reduced dosage for maintenance maybe 800-1000iu daily. Even the 20,000 should be 1 twice a week.

I’ve just taken my 3rd week Vit D tablets yesterday (Hux D3 20,000) , 2 per week. I had very bad pains in my rib cage, hips and even feet which have improved greatly in 3 weeks with above dosage.

Folate is Folic Acid which is usually 400ug per day.

B12 looks like you need injections, although 5000 strength sublinguals still work for some people even with absorption problems as you need small amounts, but still looks like you need injections as you have neurological symptoms.

Go with docs advice for Iron as too much is no good, causes a lot of unpleasant side effects.

But you do need to be tested for absorption problems which sometimes is not as straight forward. (Can take some time).

I’m 41 and had same problem as you with all the above but unfortunately my gp didn’t do further tests and just put me on injections, and my symptoms were affecting me so badly (low B12 ones that I didn’t want to wait around any longer for further testing). I now self inject 1 every 2 weeks and all is much better also taking the others mentioned above.

Don’t worry even if you have absorption problems all can be solved easily and hopefully you’ll be back on track.

I think you should ask for further testing first.

Wish you well.

(B12 injections help greatly with bloating and constipation)

Hope this puts your mind at ease.

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Hi all, thanks again for all your replies - don't know if you'll see my update but here goes anyway :)

I went to the Dr's on Friday and he was horrible, he said he didn't understand why the other doctor had given me iron tablets or told me to take folic acid as they were normal and within range. He wouldn't entertain it being anything to do with the B12, said if he was to give me the injections i could sue him! I asked if he would do the further thyroid tests and he said no, I asked if he would do the test for the PA and he said "it would be a waste of resources"... :( I had taken my mum with me and I got quite upset and had all my paper work with me and was getting confused and my mum tried to tell him how much it was affecting my life and he eventually agreed to do the IFA test. He's also testing for coeliac and crohn's.

I've bought the thyroid test off medichecks so will hopefully get that this week.

Just felt absolutely drained after the whole thing and cried for most of the evening - just felt like he was telling me i was making it all up. :(

Anyway, will get the blood tests done this week and see what they come back with. I won't be going back to him though that's for sure. Luckily we have a couple of dr's at our surgery so I will go back to one of the other ones and hope I have more luck.

Thanks again x

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How horrible for you. It’s good that you had mum with you for support. It’s so annoying when Drs don’t listen when you know you don’t feel right. The low ferritin and low B12 will be making you feel awful. That’s great that he is testing you for Coeliac etc. My friends teenage daughter was tired and the Dr just said she was a typical teenager but her mum kept pushing and pushing the Dr until he tested her for Coeliac and that was why she was tired. Not a typical teenager at all.

Stay strong and don’t give up - you know your body. Please let us know how you get on with the next tests

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Thanks judburke, will do x

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Right, well had the thyroid results back and all looks fine. At least I can tick that off the list :)

THYROID STIMULATING HORMONE 1.29 mIU/L 0.27 - 4.20

FREE THYROXINE 15.7 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 93.1 nmol/L 59.00 - 154.00

FREE T3 5.05 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00

Should get the other results next week, will update then x

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