So what is it really?

Hi guys,

Its good to be back :). As I had mentioned earlier, I was in India for a proper diagnosis of my condition and had a battery of tests done during the past 3 weeks to arrive at the exact cause. I had my MRI,EEG,serum B12, Active B12, IF antibody, gluten sensitivity, TSH, complete blood count and immunological profiling done. The good news is that the neurologist ruled out any damage/shrinking of the brain and diseases like MS and Chron's. Following are my test results and I'll need help in deciphering the results.

MRI/EEG - normal (that's what the neuro said)

Serum b12 - 1084 pg/ml

Active b12 - 184 pMol/L (range 25-165)

IF antibody - negative - 10.79 units (<20: negative)

Complete Blood Count - normal

TSH - 7

Folic acid - >20 ng/ml

Anti TPO antibodies - positive 118 (>34: positive)

Immunological profile - Normal

So basically the Neurologist told me not to worry and called it not that big a deal. Forgetfulness is pretty common and happens all the time. He also hinted at a possibility of it happening as I might be overthinking about it(stopped short of calling it a OCD).However, as you can easily get methylcobalamin injections in India and I didn't wanted to take a chance, I went ahead and implored him to inject me. I had a 1000 ug methylcobalamin injection and came back to US yesterday. Now honestly after getting injected the brain fog has increased a little with confusion setting in. My question to you guys is that even after 6 months of supplementation, coupled with healthy b12 ranges, haven't helped with the symptoms. From the results do you see something else that might be the culprit? Have I been knocking the wrong door all this time? Just for reference, I am having only memory/cognitive issues. No balance/coordination /fatigue/ palpitations etc.

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  • Hi Dionelyguy. I'm not very knowledgable about thyroid issues but your TSH looks high and the anti TPO antibodies positive result looks very high at 118 (positive anti TPO indicative of Hashimoto's (autoimmune thyroiditis)).

    Hopefully some more knowledgable thyroid folks' will comment soon - or you could post the results on the HU thyroid UK site. And hopefully will feel free to put me right if I've got this wrong 😖.

    Although your IF test is negative, this is only 50% accurate so does not rule out PA - you could also have antibody negative PA. PA, as you probably know, is an autoimmune condition and people with PA often have other autoimmune conditions (for instance, Hashimoto's), and vice versa.

    If you have already been injecting with B12 (if I recall, you have been), the serum B12 result is meaningless, since it will be high anyway because of your B12 injections. And likewise with the active B12.

    You could therefore still have both B12 deficiency, PA and/or Hashimoto's.

    From what I have seen of other comments here, TSH is a quite inaccurate way to measure thyroid function (a bit like serum B12) and what you need for accurate diagnosis is a full thyroid panel (TSH, FT4 FT3 - and a few others as well - sorry can't recall the rest and haven't time to look them up). If you look at labtestsonline.com, it'll give you information on these tests.

    Really pleased that you've managed to rule out MS etc. - phew! Presumably the neurologist also ruled out subacute combined degeneration of the spinal cord (this will have shown on the MRI of your spine)?

    Would be interested to know if you had an antinuclear antibody test (ANA) - not sure if this is part of the immunological profile. Again, perhaps others may know and reply accordingly.

    Are you able to post all the FBC results, with reference ranges? Often these are reported as normal by medics, who often seem unable to recognise that bumping along the bottom or hitting the top of the reference range is not good enough for some people and can be indicative (when read against each other and in light of symptoms) of 'things going on' 😀!

    Hope you enjoyed India (testing and medic's aside!).

    Take care x

    P.s. I am not a medic. Just someone searching for answers...

  • Thanks a ton for the long and detailed reply foggyme. The issue is i only have mental/cognitive symptoms. I am assuming if one has b12 deficiency there are generally host of other symptoms along with Nero psychiatric symptoms. Or is it that other symptoms heal before neuro ones. Yes immunological profile had the ANA test and it was negative. Do you have a link or smthng to understand the ill effects of Hashis on mental functions. And yes, India is heaven when it comes to getting medicines/injections without prescriptions. A methylcobalamin 1000ug injection costed me 3$ approximately.

  • Sorry Dionelyguy, I don't. But if you put 'hashimotos signs and symptoms' in the Google search bar, it will throw up lots of answers.

    Good luck and please let us know how you get on 😀.

  • You don't give ranges but is it possible you have Hashimoto's ?

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

  • Hi Dlonelyguy,

    The TSH level shows that you are hypothyroid. This is a pituitary hormone that tells the thyroid gland - at the front of your throat - to produce more hormone to drive all your systems, metabolism, digestion, circulation, kidneys, everything basically. If it goes anything above around 2 that means it is shouting at the thyroid gland to work harder. A lot of symptoms of that are similar to those caused by B12 deficiency and considerable number of people have both. Hypothyroid people often have multiple vitamin & mineral deficiencies. The others are correct, the high anti-bodies confirm that your hypothyroid is caused by auto-immune thyroiditis, known as Hashimotos. Sorry - you need to start learning and testing all over again! As foggyme suggested you should join the thyroid UK group and also read the website Thyroiduk.org.uk.

    BTW - I know about this because I am also Hypothyroid with Hashimotos.

    Good luck,

    Gillian

  • In my opinion you have autoimmune hypothyroidism (hashimotos) as your TSH and antibody levels are high.

    What you need to get checked now are your 'thyroid' hormone levels, Free T4 and Free T3 to see exactly how your thyroid is coping.

    FT4 should be in the top quarter of its range and Ft3 should be in the top third of the range. If they are both low you may need to consider a thyroid hormone replacement.

    Here on healthunlocked is a community call Thyroid UK (TUK) with a lot of very knowledgeable people who have had to deal with thyroid issues of their own healthunlocked.com/thyroiduk

  • If your TSH was 7 that shows underactive thyroid so look on that forum. If it was 0.7 that would be classed as ok.

  • Did you get a list of individual results for Complete Blood Count(CBC)? CBC is known as full blood count(FBC) in UK. See links below for info on FBC (CBC).

    labtestsonline.org.uk/under...

    Did you also get a list of individual results for the immune profile as I think it would be more than one test?

    Did you have a test for ferritin?

    labtestsonline.org.uk/under...

    I am not a medic just a person who has struggled to get a diagnosis.