Right now I'm in sore need of massive hugs as I've just burst into tears.
Yesterday I sent in a two page letter to the GP putting in all my recent results (posted elsewhere) and asking them to look at my folate, B12, Iron panel and consider increasing my levo to 100mcg. I detailed my symptoms and background. I don't how how to do the link to my post, if it doesn't work please could someone tell me, thanks.
I missed the gp phone call as my phone didn't ring but called reception and on my notes the GP has put 'All bloods normal. Make routine appointment if symptoms persist'.
I have made an appointment earliest is Aug 2. With a different GP.
What has floored me is the 'Results normal'. As they are not normal, particularly Active B12 of 60.4 which I think is definitely the one (going by range only) which should trigger investigation, being under 70. Correct me if I'm wrong please. I did mention NICE guidelines.
I guess I was so thrilled that my daughter has got an IFAB test (tomorrow) and B12 trial injections following a letter I wrote for her recently (she saw a different GP thankfully), that I was expecting a more positive reaction.
This has come on top of feeling really rough and not driving for several days, being unable to take my daughter out as planned for her birthday yesterday and my husband having a worsening of a mental health issue overnight (he is ok but its implications are not good).
I know I have to keep demanding and pushing and I'll see how I go, and maybe call back again tomorrow with hope of speaking to a different doctor. Doing the rounds.
It feels so ignorant and callous. I got his name so now I know who to avoid.
Stopping for now but asking for support from Those Who Know how it feels🙂
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Sneedle
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Sending a huge hug Sneedle .. we definitely know how that feels .
there is nothing quite so upsetting demoralising as "nothing important to see here".. when you are sitting there amid the reality of not being well enough to do things that matter to you and your family "a whole lot" .
Sending out a massive hug to you. I hope you find comfort with the knowledge that many of us have gone many rounds with doctors invalidating our feelings through ignorance or pure laziness. It definitely takes an emotional and mental toll. I cant tell you the amount of times I've collected info to advocate for myself and have been dismissed. And the amount of times I've broken down crying.
I'm glad that you've had a good cry to release those emotions. I know you're tired but keep fighting for yourself. Hopefully one of the doors you're knocking will lead to better health.
((((Big hugs to you )))) there’s nothing so exhausting as having to keep pushing and demanding when you know there is something wrong and the person between you and getting better is an idiot.
As for feeling ignorant and callous about having that doctors name and being sure to avoid him. Well done and good luck with it all. Everyone her is right behind you - stay strong even if it’s only strong on the surface 💐
Sending big hugs, I think most of us here can relate. You pin your hopes on a test coming back as abnormal as it might explain why you feel so bad and the "nothing abnormal detected" kicks you in the gut. Hoping you get some joy with a different GP and your family situation improves 🤞
Thank you for your kind words. The thing is, as far as I can tell I do have a result for B12 (60.4) which although still within the overall range, is past the threshold which St Thomas hospital partner pathology lab Synnovis says needs investigating (=active b12 under 70).
The Medichecks doctor suggested an MMA test in his comments, which never normally happens!
I'm starting to wonder of the gp actually read my letter, or only looked at the blood results.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Thanks for the links and info, I continue to learn!
Folate and B12
Active B12 - it’s not a test NHS offers so GP won’t be familiar with results
I did include a link to the St Thomas Hospital (mentioning it is both NHS and private) Active B12 assay where it states under 70 should have investigation. This worked very well with the GP my daughter saw, so I must have come across a less open-minded one! Or he just looked at my bloods and didn't read my accompanying letter.
Serum B12
Because this was within range GP will dismiss as irrelevant
Agreed – however, although this (Blue Horizon March 23) result appears on my Excel sheet which I posted in this group, the GP would not have seen it as I only included the Medichecks Active B12 result in the info I sent.
You will need to self supplement
I have been supplementing since March when I first tested, 500mcg as part of the B complex I take.
It’s pretty clear that one way or the other this is not enough (PA or not) so I’m going to increase it to at least 1000mcg, maybe more, in a separate supplement and see what happens.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
Got it I will do this.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
I’m not vegetarian or vegan and eat meat, eggs and have milk daily.
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