one last question ( hopefully)

[totallyFrustrated]

I have finally managed to get an appointment with my GP where I hope to convince him to give me B12 injections more often that once every 8 weeks and I never had a loading doses so am hoping for that too. I hope I can get him to do some tests, like size shape and number of red blood cells, intrinsic factor, iron and folate levels etc. Question is this : I have started to S/I with hydroxy, had 3 so far, will that slew all the test results or only the B12 levels? Should I stop with injections until I have seen him in 10 days time, or continue injecting every other day? I sure feel better when I s/i. Please will you tell me your thoughts on this?

[Nackapan]

'In your shoes 'I would continue with the b12 injections as working for you.

It's desirable to have the IFAB test before any Injections as a small chance of a false positive . ( depending on what machine they use)

Won't to my knowledge affect a negative test.

Depending on your surgery some use a negative result to stop treatment .

Wrongly so

but it does happen.

Our old surgery sent out such a letter .

If b12 I range and IFAB negative injections woukd stop.

Outrageous and misinformed.

I didn't have the blood test.

Kept b12 injections.

So concentrate on getting more b12 injections prescribed.

Keep consult simple.

If nothing else to treat.

Say so.

State clinical response and state effect wears off

State pattern.

Hope it goes well.

I've just had to reinstate my prescription!

Again!!

[Narwhal10]

Hi totallyFrustrated,

I agree with Nackapan. State clinical response and state effect wears off.

Ask for an iron panel. It is not just ferritin. Do not get hung up on the jargon that I am about the type.

It includes total iron binding capacity (TIBC), transferrin saturation (t-sats), Unsaturated Iron Binding Capacity (UIBC) and Transferrin.

Just write the things in bold on a piece of paper and take it with you..

Lay man’s explanation,

TIBC - how well iron is being absorbed in blood.

Transferrin like ferritin is a blood protein.

Unsaturated, think of getting absolutely soaked in the rain. If it’s down to your underwear, you are saturated.

Haematology is a speciality in itself and I know a tiny bit.

Best of luck.

😘

[totallyFrustrated in reply to Narwhal10]

Hello Narwhal10

just came back from the GP after waiting 3 weeks to see him, I now have to wait a further 3 weeks for some blood tests and I don't even know which ones he will do, as he explained to me his hands are tied by the local authority. When ordering bloods they have a pad with boxes to tick and some of the tests I asked for aren't even on there, so he cannot order them. He will read all the stuff I gave him and see what he can do, but feels he cannot give me a loading dose, even though I never had one as I have been having B12 injections for over 3 years now, and he cannot give it more often than every 8 weeks, or they will have his job. ( at that point I almost felt sorry for him ) and would I be willing to try amitriptilyne again....

So now I have to ask myself can wait another 3 weeks, for tests that may or may not be slewed if I s/i or not. Considering how much better I felt after the first 3 , and how much worse I feel now 8 days later, I really do not want to wait. But if my GP comes through for me, then hopefully I can get him to talk to my daughters GP because she and her children need it too, just like my mum was on it and her mum before her. Her GP is even worse, B12 deficiency is an old woman's problem and he has never heard of it in a woman under 50 or anyone under 30 or 20 and definitely not in children under 16y

Of course I get a lot of other meds from them, so if I s/I and they find out, I may have to get all that stuff privately and just cannot afford that. State pension barely covers the essentials. I feel so totally like between a rock and a hard place🥹🥹🥹🥹😢😢😢😢😭😭😭😭😭😭😭😭😭😭😫😫😫😫

[Narwhal10 in reply to totallyFrustrated]

Sorry to read totallyFrustrated,

Your G.P. has been honest with you and told you of the politics that occurs within the NHS. It would be horrible for a good doctor to be hauled ‘over the coals’ for simply trying to treat a patient effectively.

Now, the real question is, Who’s body is it ? It certainly is not mine, nor your G.P.s, nor somebody sat in a big comfy chair, sat in an office who works for the Local Authority. If you want it pierced, tattoo’d, have false nails, big lips, have it pinched, tucked or enhanced then we can at the drop of a hat.

We are aiming for health, we want the conversations with doctors so we can work together. Yesterday, I told somebody that I had looked at one Integrated Care Board’s budget. For haemorrhoid cream it stated £500,000.00. We both laughed and how most people pop or waddle to a chemist and buy Over The Counter products. Then treat themselves.

You have a strong family history of PA/B12D. You get other medication for other illnesses. 😉

Each condition is separate and is treated separately. It just so happens that it occurs in one body, yours. I have 5 separate illnesses and my G.P. knows I have no choice to self inject. I explained to the nurse that this would be the last time she would see me. Telling her there is someone worse off than me. My rationale is I am trying to save the NHS by giving up my appointment. Last week, one of my closest friends text me.

She is pregnant with her first baby. I was thrilled, she is concerned over her own health. So, I advised. She is a respiratory nurse so, I hope working all those long hours means she does properly rest. Then she can carry that little one to term. A healthy mum means a healthy baby. A healthy granny means you can support your daughter and your grandchildren.

xx

[totallyFrustrated in reply to Narwhal10]

Thank you Narwhal10, I really needed that peptalk, What would I do without my maritime unicorn?🥲

[Wwwdot]

HiTotallyFrustrated

I agree with Nakapan and Narwhal.

Go for it. Explain how much better you feel with the more frequent injections and ask for the bloods as suggested. Try to give specific symptoms and how they change with B12.

To be honest the outcome will not be down to how “you play it” at the appointment but the mindset of the GP. That’s already predetermined and you won’t change it.

Ask for the moon and be prepared to receive nothing and thus anything in between is an achievement. The great thing is you are self treating and that is what most of us have to do.

Well done and fingers crossed you get the moon!

🤗🤗🤗

[ShawnH]

Doctors are not trained well on B12 deficiency and appropriate treatment, and clearly they are not keeping up with the research. Here are studies to share with your provider. I suggest printing and handing to them when you make your request for treatment:

Summary: Highlights the limitations of normal B12 assay results in diagnosing B12 deficiency due to malabsorption in the gut and other causes.

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

Summary: Highlights the limitations of B12 assay results for diagnosing B12 deficiency and suggests treating based on B12 deficiency symptoms.

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

Summary: Highlights the limitations of B12 assay results for diagnosing B12 deficiency and suggests treating based on B12 deficiency symptoms (clinical presentation) to avoid irreversible neurological B12 deficiency damage.

onlinelibrary.wiley.com/sha...

[totallyFrustrated]

Thank you all so very very much, reading what your experiences are/ were, helps me decide what I should do. Sadly I am already on my 5th GP, as all the others were not listening and I decided not to see them anymore and try a different one, I am hoping this one will last a bit longer as so far he seems nice and listens....

So here is what I will do:

Not S/I any more till GP appointment, so if he will take bloods it's not full of German B12 😵‍💫

Not tell him about S/I for fear they will stop injections altogether.😬

Take list of all symptoms and detail which get better and for how long after a B12 injection at the clinic🤒

Take a list of tests that might be useful? This is usually where the response is" I don't need an Osteopath to tell me my job" and their mind shuts down.🤔

I had this with my Hashimoto's, got sent to endocrinologist who agreed that I was getting worse on the T4 and thought I would do better with Armour as I would need T3 , but could only get it on a private prescription. The endocrinologist refused to write that prescription though and said to ask the GP to write that, but he refused also, saying if the endo wanted me to take that he should write it.

So I consulted a GP in Germany got T3 prescription right away as they are much more understanding that there is more to thyroid than "give either radioactive iodine for over active , or T4 for under "

When I saw my GP here in England again requesting painkillers for a back injury, he asked if I was taking my T4, I said no, so he said until you do I do not want to see you, and I am not going to listen to anything you say, or any other problems you may have.

So changed to another GP in same Practice

So you can see why I am nervous about upsetting yet another GP

Thank you all so very much for your help, I will feel stronger about standing up to them now, as I have plenty of B12 in my cupboards now, and even if the GP is totally useless, I can keep myself well. What a relief! What an utterly amazing position to be in. Thank you all so very much for this🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

[Wwwdot in reply to totallyFrustrated]

Hey totallyFrustrated

That’s my sign off 🤪🤣🤣🤣🤣

🤗🤗🤗

[Hockey_player]

Is it not easier to self-inject than to go to the doctor more often for injections? Once my husband learned how to give me the injections, I stopped getting them at the GP. It's so much easier to do them at home then spend half hour each way going to his office. Also, it means I can determine the frequency based on how I am feeling.

[Wwwdot]

spot on Hockey Player

I think at the early stage of diagnosis one hopes one will get support - if you don’t ask you don’t get. But generally it’s a don’t get and you need to row your own boat, as I like to say!

🤗🤗🤗