I have hypothyroidism, my doc refused for 15 years to do Thyroid antibody tests and so I recently did them myself - over 4000 (above the very top of the scale) so I have self diagnosed with hashimotos ( sent info to docs, no reply)
However, sa hashimotos and graves are autoimmune diseases (I believe) I wanted to provide this self test to others here on thyroid UK, as if you have one autoimmune disease you could have another - give it a go and see how you score:
now - I have been diagnosed with PA early this year, I have IF antibodies, I have been given 3 months of B12 (hydroxycobalamine shots) every other day due tot he neurological symptoms I have, BUT my doc has now stopped the shots (his reasoning - because I am must be full by now), and now am every 2 months one shot, without any follow up.
I did the test and I scored 72
how about you - what did you score?
Big Hugs,
M
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Mrs_Somerset
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24 sounds pretty good, although the caviat on the side does say some people only have few of the symptoms.
I suppose the difficulty is the crossover of symptoms between a thyroid illness and something like PA - the tiredness, the memory loss etc.
I really would wish they would do the simple B12 / IF and PC antibody tests when they are testing for regular anemia or thyroid illness - it is not rocket science
I scored 63 – I have PA, was diagnosed in 2005 and has been on injections since then and I get a yearly blood test to check that my levels are fine. Last test showed slightly too high at 1215 ng/L – first time ever I have been above 6-800, so I have skipped one injection and I am due my next in June.
But despite of 9 years of B12 injections I still have lots of symptoms. I also have Hashimotos, Antiphospholipid Syndrome, Ehlers-Danlos Syndrome and Fibromyalgia – all of which have overlapping symptoms so it is not easy to know which illness to blame for what!
You mustn't skip injections, once on them serum b12 levels are irrelevant and are not meant to be monitored (this is in the guidelines). And if you remain symptomatic then you're probably not getting enough in the first place. The NHS only gives 4 injections a year. Most of this is excreted in urine within a couple of days. B12 is food - how many times a year do you eat? If you have neuro symptoms treatment is meant to be injections on alternate days until no further improvement (BNF section 9.1.2). And in my experience pretty much everyone has neuro symptoms by the time they manage to get a diagnosis. And I haven't come across anyone on the PA forums who gets by on 3 monthly - if they exist I guess they don't need support groups, so I can't know for sure! I imagine that you are either a) really longing for your injection right now, or b) so under treated that you don't notice if you have it or not, it's stopped having any effect.
Perhaps have a read of this blog re b12 and neuro symptoms:
One of the PAS moderators Vix has EDS and PA etc. the PAS website is down for a few weeks for maintenance, but maybe check it out when it comes back online.
It is an all too familiar story I am afraid, GP's seem lost when faced with these symptoms.
you could try printing off the test and taking it with you to the doctors the next time you go and state that you want to be tested for B12 deficiency, particularly Intrinsic Factor antibodies and Parietal cell antibodies, perhaps that may help them to listen to you a bit?
remember - IF your thyroid replacement treatment medication is working, THEN you should not have any symptoms - SO if you do, which the test score shows you do, something needs to be done, whether it is testing for other autoimmune diseases such as Pernicious Anemia, or even just revisiting your thyroid and testing that, they should do SOMETHING
My b12 was 261 range was 191 to 600 I gotbtested myself along with other vitamin tests was very vitamin d deficent. <7.5 on prescription. Vutamin d now x
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There will be audio files available after the conference - hopefully with the powerpoint presentations for each speaker.. x
Double Autoimmunities
A past post regarding how important it is to test for Pernicious Anaemia if we have symptoms.
Some advice would be greatly appreciated
Curious if I could have Hashimotos which is being overlooked by my GP
