Frustrated: So my Dr called backed yesturday... - Thyroid UK

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Frustrated

joeltite1 profile image
18 Replies

So my Dr called backed yesturday regarding me asking him to,he said he wants to wait for my intrinsic factor test results barring in mind that could take another 2 weeks ! He Said my B12 being 145 range 180-910 isn't that bad and he doesn't want to load me up with injections if not needed,I explained that isn't my mayjor symptoms not enough :-( I mentioned the pages I've reaserched and he Said they Arnt Drs so what do they know,but if the IF tests comes back positive then I will need treatment asap !! I don't get it :-(

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joeltite1
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18 Replies
joeltite1 profile image
joeltite1

Told me they deal with a couple of b12 patients a month so they know what there doing !!!

Marz profile image
Marz in reply tojoeltite1

Dr Chandy is a Doctor....on b12d.org

The arrogance of these people astounds me ! Time for a complaint methinks ....They would prescribe an anti-depressant but not B12....all about money.

joeltite1 profile image
joeltite1

Yes I will :-)

davidhammond profile image
davidhammond

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. So, by those standards your level is extremely low.

joeltite1 profile image
joeltite1 in reply todavidhammond

I do suffer from memory problems also stringing a sentance together is a joke sometimes :-( permanent pins and needles so much so last sept I had a carpal tunnel opp in one hand and was due the other but had bloods done as was told that's a symptom,hands and feet,and my mood swings well they are vile,my anxiety is ridiculous I can't even put my bombproof horse out to the field without crapping myself,I've had horses all my life,its killing me I don't know what to do I want my life back :-(

davidhammond profile image
davidhammond in reply tojoeltite1

If your doctor won't write a prescription for injectable B12 you can take large doses of oral B12. You can buy 5000mcg sublingual tablets very cheaply. Taking these once a day is as good as a monthly injection.

Marz profile image
Marz

...and then when you read Doctoring Data by Dr Malcom Kendrick - you realise most of the research results are skewed in favour of this and that....

nightingale-56 profile image
nightingale-56 in reply toMarz

Just started this book. What a brilliant man and so good for all Thyroid patients.

Marz profile image
Marz in reply tonightingale-56

:-)

I wouldn't even bother waiting for his results, and would find a treatment protocol to start supplementing yourself. If you understand that B12 serum test is actually measuring total B12 levels - storage as well as active, 145 is severely deficient. Your doctor is an ignoramus who is willing to put your health and well-being on hold, while he fulfills his own sense of importance. b12d.org/sites/default/file...

b12deficiency.info/

You want to google 'B12 deficiency and methylation', (there are even clips on YouTube) and you'll find a lot of info that will help you. A few names you'll hear/read a few times is: Dr Amy Yasko - who has a B12 protocol scribd.com/doc/132017201/Dr...

Rich Van Konynenberg who has a B12 protocol

phoenixrising.me/treating-c...

and Ben Lynch who researches MTHFR gene mutations and the issues with B12 and folate - mthfr.net/

And here's a couple of easier summaries to read through, for us less 'medically trained' lay people. :-) howirecovered.com/active-b1...

forums.phoenixrising.me/ind...

I'm kinda following a low and slow protocol myself, that started with a B complex, now supplementing with Methyl B12, and have just ordered AdenosylB12 (aka dibencozide, aka cobamamide), Metafolin (aka Methyl Folate aka 5-MTHF) and Omega 3 from iherb (U.S. site that's much much cheaper, although Amazon would have them too), to slowly incorporate too. I'm also helping my 2.5 year old son (at very low low doses and already seeing improvements), with the moral support from my doctor. B12 has no established upper limits and my son was already showing classic B12 deficiency problems, that actually in retrospect, I now recognise as running through his father's family line. My deficiency is moderate in comparison and linked to my hypothyroidism. I suspect his comes from genetic methylation problems.

Anyway, hope all this info helps. The last two sites were particularly helpful, cos Fredd actually talks about oral supplementation being more effective than shots, and both emphasise listening to your body, and understanding what to expect with startup symptoms. I'm finding it a lot more empowering to look after my own health (in the realm of safe supplements), and that of my loved ones, than to be fobbed off by doctors and their ineptitude in relying solely on blood tests and their hugely wide reference ranges. Even in your case where you're well below the lowest limit, and you're still not getting the help you need...Unbelievable. So angry and frustrated on your behalf!!

P.S. There's a universal recommendation from all of the experts on methylation problems - to avoid folic acid in all forms - in fortified foods and in supplements, and cyanoB12 (synthetic mixed with a low dose of cyanide for absorption and cheap production costs). All the best.

MariLiz profile image
MariLiz

I'm sorry but 145 is very low! The intrinsic factor test isn't full proof, I hope it shows up for you though. Do hope you can get some treatment soon. I believe there is a NICE recommendation that even if the results look OK, if symptoms are present, it should be treated! Good luck. MariLiz

joeltite1 profile image
joeltite1

I have spoken to martin from pas he said im being treated wrong and should get it sorted asap,but the surgery never have a space then its only practice nurse or emergency, im not classed as one of them !!

Marz profile image
Marz in reply tojoeltite1

Good for you - speaking to Martyn is a very positive thing to do. We all know here too that your treatment is falling short. Did Martyn make some suggestions as to how to approach your GP ? Maybe a very gentle and polite letter....massaging the Docs ego....

joeltite1 profile image
joeltite1 in reply toMarz

He said to ask again for the injections he said because i

Of the severity of my condition I should have a jab every two days until they such times,he is happy to get involed if Dr doesn't want to listen

Marz profile image
Marz in reply tojoeltite1

..thought that might be the case. He has helped so many - such a good man. He has a new book out which I must get....

danceforever profile image
danceforever

Can you not get B12 dissolvable pils?

I have some that you put under your tongue, and they are just wonderful.

they work as fast as an injection, and you don't need a prescription.

greygoose profile image
greygoose

I would agree with all the others that your B12 is way, way too low! When my was abut 350 - which my doctor said was perfect!!! - I was losing the use of my right arm. Since I've been supplementing myself, it's improved no end. I just don't know how these doctors get their licences! They ought to be shot!

imok profile image
imok

I have a friend who is a medical scientist. Give him a list of symptoms and he will say the cause straight away. He himself gets overly frustrated by receiving calls from go college buddies asking for diagnosis for patients they can't figure out, they should know more than him dealing direct with the patient. I'm actually not surprised that people have such issues with doctors hearing my buddies rants.

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