Thanks to all of you who pointed out an error i... - Thyroid UK

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Thanks to all of you who pointed out an error in my Active B12 test done at Blue Horizon. Now have confirmation it WAS an error.

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Thanks to all of you in a recent thread regarding Vitamin B12 testing error. I have Graves, and since January, I have been experiencing symptoms similar to Pernicious Anemia, with a red, swollen tongue on 2 separate occasions, and a strange feeling of pins and needles in one of my thumbs, which is now spreading to other fingers.Also had a weight loss to date of 21lb with severe gastric reflux and very poor appetite. I put the symptoms down to a severe hypo after taking Quetiapine. Iv'e never felt well since then but put it all down to the Graves. My thyroid levels as of April 3rd at Blue Horizon were TSH 1.380 [ range 0.270 - 4.200 ] free T4 15.28 [range 12 -22 ] and Free T3 2.7 [range 3.1 to 6.8 }. Iv'e been having symptoms of b12 deficiency,and as there is a strong link to PA with Graves, I had my Active B12 test checked with Blue Horizon at the same time as my thyroid panel ( Health Authority only now test TSH like many others. After posting my results on the forum, quite a few people pointed out to me that my blood test and range, did not sound like the Active B12 range that I ordered,but more like a normal b12 test. I contacted Blue Horizon about this and they looked into it, rang me back, and told me that there HAD been an error. They had tested for basic B12 levels that were 390 [range 191 -663 ]. Since speaking to Blue Horizon this morning, I decided to get an advanced B12 panel done which includes = FBC. Parietal Cell Antibodies. Intrinsic Factor Anti Bs. MMA. Homocysteine. Active B12 ( holo transcobalomin). Iron. Folate. TIBC. Reticulocytes. I am also having Thyroid panel rechecked at the same time, as I thought that it was a bit on the low side on the last blood test. The cost of the B12 panel ( with rebate from B12, plus April offer discount, came to a grand total of £ 393.70p. I feel very lucky and fortunate that I have the money to pay for these tests to be done, as my late mother left me a small amount of money in her will, and I promised her that I would use this money to go " privately" for any health issues/ tests, that the NHS would or could not provide in my battle to being well again. My post is to thank ALL those members and admiistrators for all of their input, and pointing out to me about the b12 test and its reference range, and how did not sound like the Active B12, which is a totally different range. I will post my results here again when I receive them back from B H. Sorry that this is such a long post.Once again, thanks to all of you who posted on my thread Lynne x

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That's great Lynne. Still upsets me that we have to pay to get any answers one way or the other. Make sure you're not taking any supplements, and probably worth fasting. Folate in particular needs to be done on a fasting basis (although you're never usually told this).

Good luck, H x

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nezzykins in reply to

Thanks hampster1. Yes, I am truly blessed by being able to pay for all of this, thanks to my late mother, but the money will not last much longer at this rate!! My appt is at 8.30am so that will be easier regarding fasting. Its worth checking this out as a source of elimination more than anything. Iv'e had this sneaky suspicion about the B12 for a long time now so having these bloods done will put my mind at rest even if it isn't anything to do with PA. I also find it interesting that my grandmother always suffered with gastric problems, which brought on her " palpitations" whereby she would have to spend days and days in bed! She also ended up with an inability to taste anything at all, which can be one of the signs or symptoms of B12 deficiency or so I have read. She also suffered with depression ( which anyone who suffered like that would have!), but in those days, i'm sure that these things were not investigated as they are now ( well.... it seems to be going full circle!) She also suffered with hand tremors too, so it sounds as if I may have inherited something from her! Maybe the Graves, but sadly i will never know now. I don't intend to suffer in silence like she did but it makes me feel very sad that if this was the case, she could have had a better quality of life. Lynne

in reply to nezzykins

There are so many stories like this, it's just scary how we're still fumbling about in the dark so much when it comes to autoimmune disease. I found out only after my diagnosis that I had quite a few relatives with thyroid disease and PA, but I never knew beforehand. My family won't have that excuse - I bore them silly about it all!

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nezzykins in reply to

Hi hampster1. It certainly doesn't sound like an excuse to me rather more very unfortunate for you that you seem to have inherited your health problems! I'm pretty sure that most of my friends have become bored with me since my Graves problem! I try soooo hard not to talk about how I am really feeling inside. It's hard to resist just speaking the truth when people ask " how are you"? I don't think most of them really want to know - just a habit of trying to sound polite! then walk away as soon as they can! lol. Looking like death warmed up on most days recently, iv'e sort of "trained" myself to give a BIG smile back and say " OH I'M FINE" !!! and get in there first and say " sorry I can't stop- in a bit of a hurry!! lol. (Yeah, going to the surgery for more tests!). We all need a good sense of humour to be able to laugh at ourselves and I thank my God every day that I was born with a good one and so far, still have mine, which keeps me going. Well.... at least some of the time. Lynne x

LouiseRoberts profile image
LouiseRoberts

Glad to hear that you got it sorted!

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nezzykins in reply to LouiseRoberts

Thank you Louise. x

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