Help for next appointment

[SMXX]

Well I’ve had my loading dose of 6 injections and on folic acid 5mg... I’m feeling absolutely horrendous!! The usual symptoms, nausea, body pain, dry mouth, awful taste in mouth, heartburn, also body shaking and as you all know the list goes on and on!! 😔

I’ve had referral to consultant and said I have to have endoscopy which is booked for 7th September!!. Is this procedure as awful as I’m expecting?.

I’m back at the Dr tomorrow to request another set of loading injections, I don’t hold out much hope but with all your support I’m going to give it my best shot !!!

Do i refer to the NICE guidelines as I’ve had no improvement at all, if I’m honest I feel bloody worse !!! X

[Nackapan]

I did too. I had my best improvement to date when every other day Injections got started after a 6 week gap after loading ones. ((That gap too long ...I was supposed to wait 3 Months! !)

I quoted BNF guidelines.

Every other day until no further improvement then every 2 months. I'm still every 2 weeks 10 months in. (Did try 3 weeks ...will see) hope you get what you need.

[SMXX in reply to Nackapan]

Hi Nackapan,

That’s so positive to hear that you’re getting the treatment you need !! Fabulous! Gives me hope too ...

This post was from Thursday last week, I had appointment on Friday. I only used it again to add my blood results.

My appointment did not go well, he sent me for emergency blood tests straight after appointment, I said that they’ll give false readings as I’ve had loading doses, however he didn’t listen and sent for intrinsic factor test too !! and coeliac screening!!

I told him about the BNF guidance and he said that he wanted to see me in a week to enable him to research what id told him, and look at blood tests !!

I fear I’m going to be back to square one with everything. Any tips greatly received x

[Nackapan in reply to SMXX]

Well hopefully if he dies read the guidelines he realises the blofds were a waste of money. Hopefully your injections will continue. I at the time was so ill I was doubting if I did need more injections . I did! The doctor days at the time because I'd had such a 'bad reaction' he was loathed to give me any more. 3 doctors later . She read the bnf guidelines. I took advice from here. Just say how are you going to treat me??

A family member had an endoscopy. They were sedated and said it was okay and the only memory was being told to swallow. Make sure you are collected afterwards as you will probably be a bit dopey. Hope it goes okay.

[Luac in reply to Nackapan]

I was unaware of false readings from tests other than b12 when having loading injections. I was tested for coeliac (tissue transglutaminase iga = 0.5kU/L) two days after a dose. Can that affect the result? I am increasingly worried that i am not being treated by my gp as i should. My MCH has been borderline high on one reading and over the range on a further two and MCHC has been high on three readings over the past year. The gp ignored these results, when i mentioned them he said they are unimportant. I have no idea what they have tested or what they havent tested. I have lists, but i dont know what they mean.

I havent had any iron tests that im aware of, i vaguely remember them saying that other blood tests (i am HIV positive, treatment working very well) indicate no need to look at iron levels. I have not been tested for PA or for pylori.

[Nackapan in reply to Luac]

I would check with your HIV specialist too. It's quite common to get low on b12.

I don't know if the blood test for coelic gets affected by B12 injection.

Just make sure folate ferritin iron study vitamin d pottassium magnesium were checked or on your next blood test.

It's good you getting the b13 loading doses as that a priority. PA teats unreliable. Pylori usually tested if you have gut problems.

I agree it's hard to know if everything goes done. They don't seem to enjoy that interested in the cause as treatment the same it seems .

Others on here know more about interpretation of blood results.

I just hope your injections improve your symptoms.

Take care

[Luac in reply to Nackapan]

Thanks, i get great care from the specialist team - they recommended this site/forum for me. I will write an email to the gp outlining my concerns, they have been great in other treatment and are approachable, they seem to be off the ball re b12.

[Nackapan in reply to Luac]

Most are unfortunately. Bnf guidelines helpedal mine

[SMXX in reply to Nackapan]

My fingers are crossed that he’s done some research.

Thanks for thy about the endoscopy, I’m definitely having sedation and yes got a lift home sorted too!!

I’ll pop another post on after Fridays appointment.

X

[Sleepybunny]

Hi,

I note that your TSH is 3.75 (range 0.3 - 5.0 miu/L).

3.75 is about three quarters up the range so may be significant. It's possible to have thyroid problems with an in range TSH result (can be hard to convince GP to investigate further though).

I suggest you post this TSH result and any other current or past thyroid results on the Thyroid UK forum on Health Unlocked. The Thyroid UK forum is very active and supportive.

In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests they can do. It is also possible to have other thyroid tests done privately in UK.

Links about thyroid tests

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

Marz who sometimes posts on this forum knows about thyroid. May be worth searching for some of her posts on this forum.

Symptoms of B12 deficiency and thyroid disease can overlap. There are lots of members of this forum who also have thyroid problems.

[SMXX in reply to Sleepybunny]

Thank you (again) I’ve popped a post on their page... I’ll have a look through posts to help from Marz too!!

X

[Sleepybunny in reply to SMXX]

Hi again,

I am not medically trained.

MCV and MCH are above range, this suggests macrocytosis (enlarged red blood cells).

Macrocytosis

patient.info/doctor/macrocy...

Your RBC (Red Blood Cell) count is below range which is a sign of erythrocytopenia or anaemia.

nhs.uk/conditions/red-blood...

labtestsonline.org.uk/tests...

Cytopenia, a reduction in amount of blood cells, can be associated with B12 deficiency and I think folate deficiency as well.

en.wikipedia.org/wiki/Cytop...

Can't see a result for RDW (red blood cell distribution width). Is it on page 2 of your results?

Haematocrit is only just above lower limit of range.

labtestsonline.org.uk/tests...

Your ferritin result seems fine

81 (10 - 291)

There are other iron tests your GP could do. Have they considered doing a set of iron tests?

Iron Studies

labtestsonline.org.uk/tests...

[SMXX in reply to Sleepybunny]

Hi,

There was nothing on second page of test results. I honestly cannot remember what he tested for, the only ones I remember are the intrinsic factor and coeliac screening.

I will ask about the testing for thyroid, however if no joy I’ll pay for them myself.

X

[Hidden]

Endoscopy really is nothing to get bothered about. I have had several down my throat and none with sedation as I needed to be able to drive home afterwards. It was a little uncomfortable but not painful and so long as you kept taking deep breaths wasn't a problem at all.

I would say best of luck, but there is no need for luck, it really is a non-event.

[SMXX in reply to Hidden]

Thank you... ☺️ x

[BirdlessBox]

I can't see the photo terribly well, but it looks like several of you results are out of range. I would regard this seriously as I have suffered symptoms for years with borderline results. It looks like your B12, Folate and RBC are Low, and your MCV and MCH are High - I would think from my limited amateur knowledge that that might be quite a clear indication of your need - especially if you also have any neurological symptoms. Have you downloaded the Checklist? I found it very helpful.

[SMXX in reply to BirdlessBox]

Hi, thank you. I certainly feel absolutely dreadful that’s for sure !! Really struggling day to day to be honest.

No I haven’t can you point me in the direction of it please?? X

[BirdlessBox]

This 2 were really helpful: b12d.org/b12d/submit/docume...

and: pernicious-anaemia-society....

[SMXX in reply to BirdlessBox]

Thank you x

[Cherylclaire Forum Support]

Might help to print the symptoms lists off, highlight any that you experience and show it to GP. MIght not though: absolutely depends on the GP.

I have kept a symptoms record charting daily what symptoms occur, what severity. I've kept it to the most frequent and easy to quantify symptoms. It was useful to me when seeing specialists, as I often had cognitive problems and some memory loss. It was useful to some of the specialists too (some were dismissive).

I still use it now, to look back and see how far I've come. Progress can be slow, occasional "blips" make you doubt yourself: it is a relief to check on your own progress and find that the bad old days are over.

I also got a lot worse before I started getting better. I needed quite a lot of B12 to stop deterioration.

I have had an endoscopy - given drugs so can't remember a thing and felt as if it took 5 minutes ! Was told I had "flattened mucosa" in the duodenum, possibly Coeliac disease, which was then ruled out completely by study of biopsies taken. Report noted "patchy gastric metaplasia"- but nothing more done.

I have also had 2 colonoscopies with nothing found. So cameras up, cameras down but have a feeling problems in the bit they can't get to in the middle !

Even getting things ruled out is useful: just don't let eliminations become endless. In the end, someone has to say "Stop, this is getting ridiculous". Let's hope your GP is thorough in his research. I think this might be a good sign - at least he isn't pretending to know about B12 deficiency or scaremongering.