further tests after loading doses

[JessB94-]

my levels were initially 17, following 6 loading does my GPdid a blood test which was 156. My symptoms are getting worse so I have been to see my gp today and she said I can’t have any more loading doses and is going to test my levels again next week. I pointed out guidance to her and she said in her opinion other things need to be looked into and 156 is fine so I can’t have any more for 12 weeks. Apart from buying my own I’m not sure what else to do?

[Wheat]

hello, not well so this is brief. Not all but most gps are misinformed re. B13D/PA. Clinical symptoms not blood tests should be the rule. Sadly blood tests and other considerations win.

Basically, I had the same problem. GP wouldn't listen, or follow guidelines. Had many neurological symptoms as well so prompt action is needed, I had to self inject. Best wishes.

[Narwhal10 in reply to Wheat]

Better soon Wheat. Good advice to JessB94.

😘

[Wheat in reply to Narwhal10]

Best to you too🙂

[B12life]

ask a separate question on this forum if anyone knows a good doc in your area. Dutch that doc!!

ask friends as well if they know docs that are willing to help outside the norms.

If no one answers then get your own supplies.

You should get copies of any of your relevant blood tests.

At a min should have the b12 (as you mentioned), a kidney function test, liver function test, folate, vit d, Iron, thyroid. TSH3 and TSH 4

[am111]

How long ago did you have your last shot?

Generally, what I have found is that you should take a shot whenever you start feeling symptoms. Gradually, the frequency can be reduced but often, suddenly going from every other day to 3 monthly does not work. If your doctor won't help, you should self-inject.

[Sleepybunny]

Hi,

"I pointed out guidance to her"

I think it is more effective to put concerns in a letter (probably harder to ignore). Might be worth trying this if you haven't already.

Do you have neuro symptoms?

See Point 1 in link below if you do.

How to write letters to GP about B12 deficiency

b12info.com/writing-to-your...

Make any letters short as GP more likely to read them and keep a copy.

Thread about Patient Safety, has links that might be useful for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

I think I left this link on your first thread but putting it here again.

It's to a thread where I left detailed replies with lots of info that may be helpful if you want to challenge GPs decision.

healthunlocked.com/pasoc/po...

"Apart from buying my own I’m not sure what else to do"

It is possible to get some GPs to change their minds but some can be very stubborn.

Some UK forum members get extra injections from private GPs, some try taking high dose oral B12 (1000mcg or higher) but this doesn't work for some people (didn't work for me) and some as a last resort turn to self injection (SI). There is a pinned post that mentions SI.

I wondered if you might have other deficiencies.

Do you have recent results for folate and ferritin (and other iron tests). Also Vit D?

Forum members here often report these deficiencies.

Have you got recent full blood count (FBC) results?

Some people can experience a drop in potassium levels when they start B12 injections. Has GP tested your potassium levels?

Thyroid

Have you had recent thyroid tests? People here often have thyroid issues as well.

Worth putting any thyroid results on Thyroid UK forum on HU along with an outline of your story.

I'm not medically trained.

[FlipperTD]

Scientist, not medic.

Repeating B12 assays when on treatment is wasteful, pointless and misleading. It only proves you've had the injections, but the GP already knows that. Shocking.

Good luck!

[Cornwaller]

Your GP is mistaken re b12 treatment.

The choice that we face is fighting GPs to treat b12 deficiency properly or doing it ourselves.

The problem is that the former is time consuming, stressful and may be unsuccessful.