Very confused

Hi there this is my first post. A bit of a long one but i have been feeling unwell for some time now. Problems with low b12 but not low enough to need treatment I think last blood test was around 255. I had a test which confirmed i have a positive for antibodies and can't absorb b12. I have been under the endocrine clinic for 8 years with no treatment but just ongoing problems that never get sorted. Now my thyriod test results are confusing my gp. My TSH was 0.11 with T4 of 18 to 2 weeks later my TSH Was 23.94 and my T4 of 12. They did a thyriod antibody blood test and the two results showed moderately high antibodies in both. I'm confused as to what is going on and why I can't get treatment. I can barely function and feel ill all the time. Can someone please suggest what I should do. Thanks

9 Replies

Hello and welcome Melstep. Poor you, I'm sorry you've not had the help you need. The best thing you could do is to get a copy of your blood test results and post them here along with the laboratory ranges. Then we can help you understand what is going on with your thyroid.

As for B12, I don't understand what you mean, are you saying you have been tested for intrinsic factor and found positive for pernicious anaemia? In any case, if you get your blood tests then we can help you to untangle it. There's anothe forum on Healthunlocked for Pernicious Anaemia so once you've got your results you could post it there.

Thanks Nanaedake for the reply i will post my results and it might make more sense

Has your doctor actually said you have Pernicious Anaemia? You would need a special test for the intrinsic factor and if you had it you HAVE to have B12 injections. If you get the actual print-out from the surgery with the ranges you can also post on the Pernicious Anaemia Site for advice.

New research has shown that we need an optimum B12 of around 1,000.

If you have thyroid antibodies, you have an Autoimmune Thyroid Disease (also called Hashimotos) and antibodies attack your thyroid gland and at times wax and wane. That's why sometimes you feel hyper and probably the cause is the high antibodies. Someone with thyroid antibodies have to have levothyroxine. If you email and ask for a copy of the Pulse Online article by Dr Toft. He was President of the BTA and in his article he states if antibodies are present we should be given levothyroxine. Highlight this part and ask GP to prescribed.

Always get a print-out of your results with the ranges for your own records and post if you have a query. With antibodies you have an Autoimmune Thyroid Condition called Hashimoto's, hashi's for short. Going gluten-free can reduce the antibodies and thus the attack on your gland. You will be hypothyroid eventually and treatment for both conditions are the same, i.e. levothyroxine.

Blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of around 24 hours between last dose and test and take afterwards. This helps give us the highest TSH as that seems to be the only result the GP looks at. Also ask for B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient and everything has to be optimum.

If you've not had a blood test for a while and didn't follow the above protocol, ask for a new test saying you've had some advice from the NHS Choices for advice about the thyroid gland.

Get a print-out of your results and always put the ranges as labs differ and it is necessary for members to comment upon them and put them on a new post..

What a wealth of info! I'm sure yr post will enlighten many!

Thanks Shaws for the reply i will post my results but i wasnt sure if the b12 and thyriod problems are connected which as both are positive for antibodies. The gastric parietal cell antibody test was positive but the associated intrinsic factor was normal my b12 was 251 ng/L range 211.00 - 911.00 ng/L I have no idea what that means. Not sure of ranges as these two results came from the hospital in a letter but TSH receptor antibody of 7.1 which is high and TPA of 184 which is moderately high. It says that antibodies are present but not active and to keep an eye on function tests over time

Thank you Nanaedrake and Shaws for all the great information i really do appreciate it. I will post my test results with ranges and look at the pernicious anaemia site for advice. Its taking all my energy to get out of bed today feeling so bad, can't concentrate and every little thing is just exhausting. I guess you have to just keep pushing for help but is hard when your exhausted, so thanks again for replies they will push me on.

Yes, it's hard

I found this forum a few years ago but couldn't make sense of anything or act on advice as I was so unwell, brain not working properly. Docs reception seemed to make it so hard to get test results but things have moved on since then and it's now our right. Take one step at a time. Get blood test results first. Post here and then you can take next step. I hope you will start to feel empowered to regain control.

I have posted results but i didn't know how to do it in the reply section as it was a photograph.

Oh, that's ok, I'll search for them.

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