Newly diagnosed, dr says loading not needed? And inj gives dopamine hit so will be addictive!? Really?

[CeiliGal]

Hi, i have hashimotos for 15yrs but feeling v bad since christmas so investigating everything. tests show gpc antibodies and a lowish b12 (332). Had to fight for antibody tests, But at least GP offered the b12 inj, i was primed for another battle! I just need to check his 2 puzzling statements:

1) "loading no longer needed". This is contrary to PAS and here but wondering is it because my.b12 is within range maybe? Or more.likely that he is not informed? I have many neuro symptoms, feet and hands tingling v bad, tinnitus, bad brain fog and memory and v poor concentration so sounds like i need loading according to PAS and guidance re neurosymptoms. What do you think? 1st inj is mon and seeimg dr on wed so need to prep.

2) his strange comment re inj and a dopamine hit and thus can be addictive! Is there any truth here? Is he trying to preempt me needing more injs? (He said it is every 3 mths, which i now know from PAS that i can challenge).

Sorry for the long question just really puzzled..

[clivealive Forum Support]

Hi CeiliGal

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

So for a start although your B12 level in "in range" you are having neurological symptoms.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are near the bottom of the range.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[CeiliGal in reply to clivealive]

Thank you, i will prepare with all the links you have given.

[deniseinmilden]

Really??? He's an "uninformed !!!!!!" and in my opinion should be struck off. Unless you have extreme reasons to see him I suggest you change Drs.

So long as you can get at least one injection out of them so you know that you won't get an extremely rare reaction to the jab, if you can't see a less terrible Dr to get the treatment you need then you can always self inject like so many of us do.

It's easy - much easier than the thought of it - and cheaper than travelling to a Dr's surgery.

Above all you do need jabs and no you definitely, definitely can't get addicted to them - what utter rot!

Sorry - I'm normally calm and polite but this has annoyed me: this person is getting paid for saying things that are untrue and perpetuating your suffering.

[deniseinmilden in reply to deniseinmilden]

I'm sorry I must go to work now but there's more information and links to other people's replies to help you in my previous reply which you can read by going to my profile by double clicking on my name and looking under the heading "replies".

[e66-- in reply to deniseinmilden]

Go Denise! x

[CeiliGal in reply to deniseinmilden]

Thank you SO much! I thought it was craxy, I am so angry anyway having to fight for everything BUT he has been so good in other ways - listens, thinks carefully about symptoms, has not passed me off as menopausal. And, as the other 5 GPs were awful I am unable to change now - but I will see what he says on Wed. I am concerned that changing practices will be no better as seen so many GPs here and all generally poor with chronic problems. I am also speaking to a GP friend this weekend and will be interesting if he has any comments on this - whether it has come from a BMJ message or if he agrees with you. But I will check your other messages as you say - and read about self injecting. And thanks again - it feels so lonely but support here is out of this world. (I have a science and nutrition background and so can research no problem but it is such an uphill struggle for everything! Especially when neuro symptoms and horrific memory and brain fog, LOL)

[deniseinmilden in reply to CeiliGal]

You so have my sympathy! I too have a science and nutrition background but mine is with a farming and veterinary perspective - no placebos there!

I think it is the way this is so crippling, the wierd things it makes you feel and the trouble we have with recognition and treatment of this that brings us all together to provide support for fellow sufferers: you are not alone and are now part of a very caring worldwide community.

When I'm having a good spell I find it hard to believe how bad I am when I relapse so I can understand how most people just cannot imagine how bad it is to live with it.

Friends going through chemo have a better understanding of how bad it is but often they say they feel better than I do when I relapse but they get support and recognition whereas we just have to carry on and try to work, etc.

Lots of us are self employed and stand to lose everything (and many have) if we can't work but still the medics suggest it's "all in our heads" and we'd be OK if we just stopped our treatment and took antidepressants instead! We are highly driven people who want to get on and achieve things - we don't want to give up and go to bed.

I don't pay for all my supplements and high-nutrient foods and jump through a million hoops for my body including doing daily injections and not going out or ever drinking etc, for the fun of it but they seem to think it's just part of the imagination and placebo effect!

While all animal feeds advertise "packed with nutrients / vitamins and minerals for health and vitality", when it comes to people nutrition is turned into a mental health issue and they want us to take genuinely addictive antidepressants which don't fix the problem!

People say "But you always look so well..." to which I often think - if only they could see my "wheelchair"!

Saying that, it's not all bad and with enough B12 and supporting supplements it is possible to feel reasonably well at least most of the time. The best bit for me is getting a lot of my memory and cognitive function back. I can even talk more fluently now than I could four months ago - and that's after four years of treatment!

[Frodo]

I've just been having a look on the internet for evidence of the dopamine 'hit' and addiction theory your doctor has suggested may result from regular B12 injections. I can't find evidence of that so far. It seems likely B12 might affect brain chemistry in a positive sense, but it doesn't provide any experience of a 'high' and I really doubt it's going to lead to a chemical addiction - whereas there are readily prescribed medications that will do that.

Exercise apparently increases dopamine levels: is the doctor going to warn you not to do that either? Or drink green tea or eat bananas?

You could ask him for supporting evidence for this theory. I'm sure we'd all be interested to see it.

[CeiliGal in reply to Frodo]

Thank you, i suspected as much as i could not find anything either. I wiĺl definitely ask. I wonder is it his explanation of why patients appear to need injections more often than 3 months. But he is the best gp in the practice, i have seen all the others, and only seen him.once. He does have a much more open attitude and thinks like a detective with my symptoms ( i have been discussing t3 with him also). So i will tread carefully , with first aim to educate him on needing loading injs. He has students with him next week, not ideal, but can educate them also. Thank you so much for replying, i knew it sounded crazy but being confident alone is hard.

[deniseinmilden in reply to Frodo]

Written supporting evidence at that! 😁

[deniseinmilden in reply to Frodo]

For goodness sake don't eat chocolate then!! 😁 😁

[Frodo in reply to deniseinmilden]

Never!!!!!!!! :-0

[wedgewood]

If he is the best GP in the practice as you say, then you must change practices a.s.a.p.

[Ritchie1268]

The only "dope"-amine is your Dr, along with the other dopes who inject B12 who aren't B12D as the latest "Fad" who believe injecting B12 makes you lose weight & gives you the energy of a super hero!

[CeiliGal]

Update - Doc agreed to loading doses and repeat in 2 months when I showed the guidelines, which he did not know about. Next chat will be about continual loading until symptoms stop improving as per guidance - that may be a harder sell! But, despite his comments, he is the most approachable and accommodating doc I have had, wants to work with me, acknowledges my symptoms are bad and does listen so much better than others who were quick to dismiss as menopause, maybe CFS, very anxious etc etc. And does not want rid of me - which is a big plus. I will ask about the dopamine/addiction comment and where this has come from when I get a chance. Thanks everyone - this forum is my rock right now.