Do you ever feel like screaming

[yorkshiregirl44]

Had doctors appointment today and i felt like id been given two stikes and one more i would be out of the surgery.

Got referral to Rheumy but dr disagreed with everything i said about thyroid disease.

The last time my B12 was done was july 2012 result 241 range 110-914, i said this needed to be at the top end of the range with Hashimotos and quoted some research, she laughed in my face and said they have not properly researched,

Feritin level done jan 2014 result 57 range 10-180, again very low.

What arrogance that the nhs think they have all the answers and no-one else is capable of knowing a little bit more that them and i dont mean me i mean other doctors and nutritionists who have researched into Hshimotos.

[Hidden]

I despair with GPs these days and the less I see of them the better. Have managed a couple of years so far!

Reckon they're all running scared cos people have become empowered with the internet so there's no hiding place for them.

[yorkshiregirl44 in reply to Hidden]

For some reason a resort to child mode when having failed to explain myself the next stage is tears and despair...

[sarahstevenson in reply to yorkshiregirl44]

I do that too rubbish in't it. Need to wear some power shoes, or a beard next time, I'll try to develop a strength strategy - . . . .ideas?

[Hidden]

241 is very low yorkshiregirl44, and that was 2 years ago. It could be even lower now. You have a lot of neuro symptoms and I really think it's imperative that you get a B12 retest including folate. Your doctor is an idiot, there is quite a bit of research on serious neurological damage (subacute combined degeneration of the spinal cord - SACD) in people with a "functional" B12 deficiency, that is, normal range serum B12. It is also a rubbish test subject to false results, if she wants evidence then slap her with the UK NEQAS warning about the test:

ukneqas-haematinics.org.uk/...

False normal B12 results and the risk of neurological damage (Please click for details)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

And here is a research paper on functional deficiency:

ncbi.nlm.nih.gov/pubmed/191...

Please see a different doctor and get B12 and folate retested, we already know from your blood tests that MCV and MCH are top of the range. Ask the Rheumy to run the tests if necessary, including anti-intrinsic factor and anti-parietal cells, but if the referral is months away I probably wouldn't wait. Some more info on testing here:

b12deficiency.info/b12-test...

Another option would be to contact Dr Chandy at B12d.org. He is based in Horden Co Durham if you're anywhere near there. Take his symptom checker and see how you score:

b12d.org/b12-signs-symptoms...

H x

[yorkshiregirl44 in reply to Hidden]

Thanks i will try to get my head round it and yes i will send them a copy. Might start supplementing B12 for now, want to avoid going back there for a while it zaps every ounce of mental energy.

[Hidden in reply to yorkshiregirl44]

Please don't supplement, you haven't been tested for 2 years, you could be low enough for the injections but if you supplement now you'll never get a diagnosis as it will raise your blood levels with no guarantee of reaching cell level. With neuro symptoms you really need the injections. Just one more link about what to do now:

b12deficiency.info/what-to-...

I know it's a fight, if you can't face the GP B12/folate testing is available privately as a home blood test kit. Or consider the Active B12 test: thyroiduk.org.uk/tuk/testin..., or the urinary MMA test: medichecks.com/index.cfm?s=...

[yorkshiregirl44 in reply to Hidden]

Private is a better option for me at least to get tested. I have crohns disease so i may have problems with B12 due to that.

[Hidden in reply to yorkshiregirl44]

Yes, that makes your doctors attitude even worse, what an ignorant bunch most of them are. Do you see a gastro for your crohns? Some more research:

ncbi.nlm.nih.gov/pubmed/178...

"Vitamin B(12) abnormalities are common in patients with CD and patients with a prior ileal or ileocolonic resection are at particular risk. Routine screening for B(12) deficiency in patients with CD is warranted."

[yorkshiregirl44 in reply to Hidden]

I had a bowel resection years ago and dont see anyone now. Over the years iv had flare up not touch wood not for alot of years. Iv always thought CD was the cause of why i dont put weight on even with thyroid probs.

[Hidden in reply to yorkshiregirl44]

I am gobsmacked you haven't had any follow up. You are at high risk of nutritional deficiencies. If they've messed with your ileum it's pretty much game over as far as B12 absorption goes.

[Hidden in reply to yorkshiregirl44]

You must insist on a follow up sweety... an extract from just Wiki.....

"Individuals with Crohn's disease are at risk of malnutrition for many reasons, including decreased food intake and malabsorption. The risk increases following resection of the small bowel. Such individuals may require oral supplements to increase their caloric intake, or in severe cases, total parenteral nutrition (TPN). Most people with moderate or severe Crohn's disease are referred to a dietitian for assistance in nutrition.

I'd ask for more than a dietician! Best test before supplementing - then you know the base level - You are entitled to a B12 test at the very least. (however GP only obliged me after I got myself the Active B12 test £57, but I don't have CD)

I too just give up with doc's attitude, I can never seem to get through to them! - can you take someone with you next time?

((Hugs)) Jane

[Hidden in reply to yorkshiregirl44]

If you know or suspect that your vitamins and minerals are not optimal then it's an excellent idea to supplement them. I may be out of order here - but I don't think it's possible to overdo supplements of this kind. See if you feel better. If doctors aren't helping us we have to help ourselves.

[yorkshiregirl44]

I moved to a different county a few years ago and only saw someone once then he discharged me. But before that u saw a brilliant consultent on a regular basis.

[yorkshiregirl44]

Thanks Jane,

Yes im going to get B12 done privately and then try and get injections. Its so exhausting all this backwards and forwards to the doctors and then specialists. There is no working together and looking at the person as a whole. I wonder how many of us are low in minerals and vitamins and could easily be treated but instead we do the rounds to different consultents and then back to the starting point.

[Hidden in reply to yorkshiregirl44]

seems they never attach any importance to vitamins/minerals, trusting food is nutritious enough - so how come we have malnutrition in the Western world? Impossible!

Yes it's exhausting, which is why I haven't been back to the GP/ENT/Osteo-surgeon/Physio or uncle Tom Cobbly either. Maybe we will when we have the strength. lol! J

[yorkshiregirl44 in reply to Hidden]

Hi Jane, iv just sent you another message by mistake. I thought the other one hadent sent. Sorry to have repeated myself, if onlyi had paid closer attention i would have seen my other post.

[yorkshiregirl44]

Hi Jane,

Yes im going to have test done privately and then try for injections. Its so unfair that we have to troll round all these different specialists when the problem could be quite simple. IF only doctors would treat the whole of a person we might get somewhere.

Thanks Christine

[Taffhamster]

They haven't got a clue, have they? My GP got fixated on my cholesterol levels (which had risen) but shrugged off my low Vitamin D (three points above a significant insufficiency) as no biggie. Of course, Low D is linked to high cholesterol (and hypo) but she got very snippy when I politely refused a prescription of statins. You hit the nail on the head – they don't treat the person or even go by symptoms, and if you dare to disagree with them, you get the "naughty child" treatment.

[crimple]

Yorkshire girl, try reminding the medics that government and NHS are exhorting us to take responsibility for our health and work together. The NHS side seems to think that being responsible means paying for everything your self! I agree with other poster, if you have had bowel resection you should be tested for Vits etc as absorption is very low and CD is an autoimmune disease. Do you have TPO antibodies. Hope you make some progress