Since then I went back to my GP who wasn’t interested in these results at all. Then with the help of my daughter I wrote him a letter setting out my symptoms and referencing that levels of b12 below 70 should be tested and that they should go by symptoms. I also explained that fT3 was low and this is reliant on optimal vitamin levels.
I also references I am on omneprazole which can cause problems with absorption.
He said he would speak to an endocrinologist which was positive but then when I had a follow up phone call he said the endo wouldn’t comment on private test results. He said everything was fine again but said he would do nhs test of b12 and TSH and t4.
I do all of the things such as not taking thyroxine 24 hours before and away from food, I stop taking biotin a week before.
These results were b12: 334 (197-771)
TSH 0.26 (.27-4.2)
Ft4 19.3 (12-22)
Obviously you can’t tell anything because there’s no T3 but they don’t test that.
Any ideas of how to proceed? Is it worth me paying to see a private doctor, will he also look at b12 as part of that or do I still need to sort that out before I see him? Do these new results show that b12 might still be a problem or can I just supplement with a good vitamin b complex?
I can’t see that I can go any further with this doctor unless I complain. And I don’t really want to do that as it’s just hassle and I don’t have the energy to keep fighting.
Thanks in advance for any thoughts or words of encouragement!
I am afraid he will want to reduce my thyroxine when I next speak to him but I will push back on that unless he tests fT3. It seems ridiculous to me because he refuses to acknowledge the vitamin implications of conversion and ignores the fT3 levels. I guess this is typical of most GPs. If he wants to reduce my thyroxine can I demand to be referred to an NHS endo?
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HypoPirateGirl
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I don't think you can demand to be referred to an endo - and if you do see one, you may well be disappointed! Mine is a "classic" diabetes man who has never discussed nutrients. He did, at my insistence (following a suggestion from my lovely pharmacist) test B12 once - but was very dismissive, saying "it's only relevant if you're hypo" ... which floored me, as that was why I was seeing him
I think you're right to hold your ground against any dose reduction, especially without a T3 test. You may then be able to get a referral to an endo to explore how well/badly you convert- so may be worth doing some research about who you would want to see if you get that referral. It doesn't have to be the nearest person.
Have you had the list of T3-friendly endos from Dionne at Thyroid UK - tukadmin@thyroiduk.org
This will hopefully be the making of you, as GPs don’t understand on the whole! They test B12 in your blood when giving you the jab & get ridiculous readings, then take you off etc etc. I’d do all my talking to a consultant & you won’t look back... There are folk on here if you msg will help with best in your area etc... Don’t stress about this if you can go around it is my view & when with the consultant ask he not only writes about your visit back to the GP but that he states standard blood tests re B12 > if jabs are suggested for you are useless... Mine wrote saying “patient well educated on her own health & we’re happy to monitor through the hospital!” Most polite back off letter I’d seen lol... I even had brilliant help from the B12 group & association through documents I could shove at the GP or nurse... Our only issue now is the frequency of jabs... But we fight on... Good luck get referral 🙂
Yes I’ve seen many posts on here about testing when you’re having jabs. Doctors eh.
Well I think I’m going to try and self supplement as I don’t think I’m so low as that it needs jabs and we’ll see if I can absorb enough from tablets. If it increases my conversion to t3 I will be delighted. And I might write another letter to my GP to explain as such...
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Thanks I’m going to self supplement as you suggest. I’m going to take the igennus super b and try 1 a day, the vitamin d with k2 spray (I think from this calc I only need to take 3,000 iu to build up so that’s easy enough) and I’m going to take magnesium glycinate tablets.
My other half has just been tested as deficient in folate from gp but they’ve prescribed him 5mg folic acid tablets. I’ve told him really to take the folate MTHF instead but he’s worried that the igennus super b might interact with other medicines he takes (statins and blood thinners I think). Are there likely to be any contraindications with a b complex? I’ve told him to check in with a pharmacist.
Will then retest in 2-3 months as you suggest and see how my conversion is doing then. Fingers crossed the vitamins are all I need thanks for your advice!
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
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