Very confused :S: Hi everyone, I posted in the... - Thyroid UK

Thyroid UK

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Very confused :S

Diane17884 profile image

Hi everyone,

I posted in the PA section of the forum looking for some advice regarding my vitamin levels. Mainly b12. I was advised to do so on here as my doctor doesn't seem concerned as I'm 'in range' but very low.

Going on the replies I'm very confused. I'm enclined to go with the advice I've been given here regarding supplementing as it is hashimoto's I've been diagnosed with after all and I understand we need good vitamin levels to be able to convert and feel well.

I had a vitamin plan all sorted and felt like I could finally get my head around, understand and work towards getting well again now I'm more confused than ever! Which doesn't take much with my brain fog granted haha

Here is my post to PA

Any advice appreciated


Diane x

9 Replies

Sorry but I have followed both Forums for quite some time. Some members of the PAS Forum have discovered they have Hashimotos - long after thinking their B12 Deficiency was Idiopathic - no known cause. Well for me that is good enough to say that the Hashimotos was involved. I bang on about the Thyroid on the PAS Forum so people can explore and discover more ! - so have no idea whether my information has helped others ?? :-)

I hovered around the 300+ mark for years and thought I was fine - and the PAS Forum would say the same - however I had spinal surgery for decompression back in 2007 - which I am now thinking was caused by the B12 Deficiency affecting the myelin sheath. I now self-inject weekly and have made excellent progress. I do not have a Terminal Ileum where B12 is metabolised in order to make the journey back to the liver. This was removed in surgery for gut TB - when I was 27 - now I am .... reverse the numbers :-) Not one doc ever mentioned that I would need B12 injections for life. I think a B Complex skewed my results over the years and yet at a cellular level my B12 was starved !

So many of us here have improved by taking B12 in doses that are not suggested on the PAS forum - sadly. Science rules OK - but as we know sometimes patient to patient experience can win the day :-)

Diane17884 profile image
Diane17884 in reply to Marz

Thank you marz :)

Yes I think im going to stick with my plan as advised on here. Surely It won't do any harm to at least try and if I feel improvements fantastic. If not then I can always stop taking them and look at other avenues. Also from what I read online b12 is a very safe vitamin to take and I'm being very sensible in regards to dosage and introducing vitamins 2 weeks at a time.

Do you happen to know how long we should wait before testing bloods again to check for any improvements in levels?

Marz profile image
Marz in reply to Diane17884

Once supplementing B12 - further testing is of little value. Go by symptoms :-)

Diane17884 profile image
Diane17884 in reply to Marz

Thank you :)

Ajaeger profile image
Ajaeger in reply to Marz

Marz- I wanted to let you know you have helped me! I was on another PA board several months ago trying to figure out if I had PA or not. I posted a lot of blood test results. I got many helpful answers, including yours. I had posted all my bloods, which included a private thyroid panel I had done. You mentioned my thyroid looked like it was struggling, even though all my numbers we in range. I came over to this forum in search of information and hopefully some answers to my symptoms. In the process of reading the info here and on my own I discovered it sounded much like my 19 yr old daughter was suffering from hypothyroidism. I hen had her privately tested and she was indeed hypothyroid. She is now on levothyroxine and we are hoping to sort her health struggles out. So thank you so much for directing me to this forum! Such a wealth of information with a complicated issue.

Marz profile image
Marz in reply to Ajaeger

You are welcome . You have to pat yourself on the back for stepping out of one box and into another to explore possibilities to help yourself and your daughter. So glad you are making progress for your daughter too. Thanks for letting me know 😊

Marz is absolutely right. :-) The PA forum tends not to consider Hashimoto's as being a common and important element in the autoimmune gastritis that leads eventually to permanent B12 malabsorption. (It might be possible to reverse the damage early on, but that's another subject - look up Izabella Wentz). There are several roads to this state of malabsorption, as I'm sure you know. Of course, quite a few of us with AI conditions will have both Hashi's and PA.

One of the reasons I left the PA forum was the increasingly rigid approach being taken to various aspects of the subject and the interpretation of available evidence as applied to individuals.

Diane17884 profile image
Diane17884 in reply to Hillwoman

Hi Hillwoman,

Thank you :) Yes I was quite surprised at the reaction recieved which left me feeling even more confused than before and none the wiser lol

I guess I do need to consider both sides but as I'm diagnosed hashi and doctor isn't concerned about vitamin levels I will focus on that and follow advice from other hashi sufferers who have personal experience. I Only started supplementing yesterday with b12 and just wanted some advice on possible Pa with blood results before supplemeting as know it could skew things.

My gut is slowly improving with a gluten, dairy, soya and egg free diet. So I'm hopeful that absorption will improve :)

Marz profile image
Marz in reply to Diane17884

You are doing many good things - so hopefully you will soon be feeling well - 😊

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