Do Doctors ever listen?

[Polo22]

So did private bloods, had been SI so knew B12 would be high. Last year was B12, 354 197-771, lots of neuro symptoms, Folate 2.7ug/L 3.9-26.8. Magnesium, 0.82 mmol/L . , Vit D, 10 nmol/L >75, deficient,,,, Iron was 9.9 5.8 - 34.5. . CRP was 6 mg/L 0-4. TSH 0.81mU/L 0.27-4.20 Free T4 22.3 pmol/L 12.0-22.0

Blue Horizon results (9/5/22) B12 1476 145-569 pmol/L Folate 31.20 8.83-60.8 nmol/L. Magnesium 0.90 0.7-1.0 mmol/L. Vit D 53 nmol/L , no iron done. CRP 6.85 <5.0 mg/L.. TSH 8.91 0.27-4.20 mU/L Free T4 17.2 12.0- 22.0 nmol/L Free T3 3.11 3.1-6.8 pmol/L.

GP didn't believe , trust Blue Horizon wanted to repeat, persuaded her to do extra's , so NHS results May 23rd, B12 2000 ng/L 197-771, whilst SI. Folate 12.6 ug/L 3.9- 26.8 . No magnesium result, Vit D requested but not reported/done. Iron 25.0 umol/ L 5.8 - 34.5 , CRP not checked, TSH 5.3 mU/L 0.27-4.20, Free T4 19.8 pmol/L 12.0-22.0 , Free T3 requested not reported/done.

Made appointment to discuss missing results ? why.

So GP tries to tell me all results are fine, TSH of 5.3 is in range so Fine, said T3 result wasn't needed as it's worthless rubbish ( that's why NHS doesn't bother) I corrected her that it indicated undermedicated and I had already secured an increase back to original dose of 150mcg. Also that previous result of T3 indicates problem with T4 to T3 conversion, her eyes glazed over. B12 result she said was " dangerously high" I said it is high because I am SI, and it was not dangerous, she suggested I " stop doing that, and we will check again in 4 months".

I rallied, she said "IFA was negative so that proves there isn't any problems with absorption" as does high B12, I said but serum B12 is not the same as active B12, so no we don't know that there is not a problem with absorption. I pointed out that without full results of cofactors this was indeed all a waste of time. Give me bloody strength

[jade_s]

Sending you lots of strength!!!!! 🤗

Makes you want to scream, I know.

[Jillymo]

A doctor that listens, what ever will patients be wanting next ? ? ? 😱What a battle it is to find a Dr or consult who understands B12 deficiency I can fully understand your frustration. It makes you want to scream when they come out with 'your B12 is dangerously high or stop your treatment and will test in a few months time' it just goes to show what ruddy idiots we are dealing with !

You must be at the end of your tether. 😡

[Polo22 in reply to Jillymo]

tether end well and truly reached, 😆 think It's G&T Time, well later anyway,

[doityourself]

If it wasn't so bl***y serious I would be laughing at the idiocy and ignorance displayed by GPs. And dont even start me on trying to get to see one! Will they give the issue of P A the careful consideration it requires? The impact it has on suffer's lives and health is phenomenal. I share your frustration with GPs and people just do not understand the impact it has on an individuals life both physically and mentally. I wish I could give words of reassurance but all I can say is get as much b12 into your arm, butt, leg... as possible. I haven't managed IM self injection yet but rely on nursing friends and local pharmacy.Wishing you strengh.

[Peppermints]

Morning, can I ask, does this above results for TSH, T3 and T4 show an underactive thyroid? And does this have any indication of poor b12 absorption or are the two not linked at all?

I also know the pain of "normal range"

My nurses whi are giving me shots are more knowledge about b12 issues than the GPs.. 😞😕

[jade_s in reply to Peppermints]

Yes the 2nd set show hypothyroidism and/or undertreatment for it. Poor Polo has been getting the runaround from docs trying to reduce dose. There is thyroid forum here if you are interested healthunlocked.com/thyroiduk

Regarding links. Well, yes, sort of. If autoimmune (PA & Hashimoto's which is autoimmune hypothyroidism), you are more likely to have another autoimmune disease but it's not guaranteed. Or, if you're hypothyroid, often you have trouble absorbing nutrients so that can cause low b12, as well as low iron, folate, magnesium, vit D, etc. But tests are really the only way to know, and many symptoms overlap.

Nice you have good nurses

[Peppermints]

Thanka @jade_s..... Is it reasonable to just simply ask my gp to test for these things? I have lots of other auto immune issues and they all go hand in hand dont they? I already have some, it's not beyond the realms of possibility to simply ask for some more tests which the doctors havnt thought of?🤷🏼‍♀️

Sorry, so many questions still🤦‍♀️

I know they havnt liked it before when I've asked for things or they usually say, what do you expect the outcome of today should be?

Aren't they the GPs!!!??? Has this been a similar thing for you Polo22 ?

All that hard work you have done with private tests and for them to not listen😞🤦‍♀️

[jade_s in reply to Peppermints]

Hi Peppermints yes they go hand in hand! I think it's totally reasonable, and important, to ask for these tests. In the UK you can also get private testung if doc won't cooperate.

You might want to start your own post with these questions

I won't be available for a while but I'm sure others will be around to help you!

[Polo22 in reply to Peppermints]

Yes unfortunately some GP's can get very defensive when asked for things they aren't too familiar with. I think they can come across as quite bullish to try and protect their image , or their God like psyche

[Pixielula in reply to Peppermints]

Hi peppermints …. It’s important if you have thyroid bloods done to have the earliest blood test as possible8:30 ish not take any supplements with iodine or biotin in them for a few weeks before and to do the test fasting: ie no food only water. Never have bloods done after 9am unless you are pretty sure your THS is going to be super high! THS is at its highest around 2am then drops off during the morning and afternoon, in order to be diagnosed hypothyroid you need that test to come as high as poss, following the above will give you the best chance of that happening…. But yeah post on the thyroid page as well

[Sleepybunny]

B12 result she said was " dangerously high"

Maybe you can show her these articles?

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

(from Dutch B12 website)

stichtingb12tekort.nl/engli...

[Polo22 in reply to Sleepybunny]

Thank You Sleepybunny, did try to tell her but always like to reinforce with the written word, evidence based all the way, harder for them to dismiss and patronise

[Sleepybunny in reply to Polo22]

See Point 7 in letter writing link below.

b12deficiency.info/writing-...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

BNF treatment guidance has changed since above blog post was written.

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

There may be useful quotes from these documents/articles that you could show her.

UK B12 documents

NHS article about B12 deficiency and folate deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Have you tracked down the local guidelines on treating B12 deficiency for your CCG/Health Board?

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or a copy of local B12 deficiency guidelines.

May be something in PAS articles and PAS page for health professionals

pernicious-anaemia-society....

pernicious-anaemia-society....

[SKYROCKET123]

Unless i've been taking 'stupid pills' today (which is possible! 😁) your TSH is over the range and high. You are probably Hypothyroid with a TSH like that. How are you feeling?

[Polo22 in reply to SKYROCKET123]

Have been feeling decrepit, fat frumpy demented, feel nauseous a lot some days although eating clean and reasonably healthy kept putting weight on. Was seriously beginning to think I had early onset dementia. With SI B12, supplementing vits and now getting an increase in Thyroxine can see some improvement. Think someone has put a new light bulb in at the end of the tunnel 😅

[SKYROCKET123 in reply to Polo22]

I'm very much the same. So bloated and overweight and tired. I've had my levo dose rejigged and am now taking B12 sublingually several times a day and although I'm not 100% I'm so much better. I hope you continue to improve and feel good. You're obviously on the right track now.