Daughter still struggling Update.

[Ritchie1268]

Morning all.

I think it was around 4 months ago when I posted about my daughter's blood test results when her Vit D was really low, but I was also concerned about her B12 being 288, though her GP wasn't concerned, (She has a different GP surgery to me).

Anyway, after not feeling any better, constantly exhausted no matter how much she sleeps, I asked her to get another FBC, particularly B12.

I went with her yesterday for the results which showed her Vit D now fine, but her Folate was low & after her GP said everything else was fine, I asked about her B12. It's now at 200, a drop of 88 in 4 months!

I said to her GP, don't you think that's a problem? She eats meat & dairy daily. Oh yes, it has dropped she said! The range must have changed slightly as she said it's 1 point off lower range, but she won't treat her.

She is sending her results to a consultant & if they say all is fine, she said she cannot treat her, not even loading doses to see if she improves. She said she's not allowed to do that as results are within range!

I'm so tempted to give her loading doses myself but won't. Only option is to change surgeries if they won't help.

Has anyone else heard of this?

[Nackapan]

The range has changed. My husband was borderline. He is also diabetic so more at risk to b2 defiency or PA.

The bottom number has dropped to 145pg/ml!!!! -914.0 is considered 'in range. It used to be 180pg/ml-914 same lab.

Quote symptoms again . Has your daughter been taking oral tablets ? What consultant are the results being sent to. ? Akso has she had other blood tests? I have heard of this . Doctors are still ordering b12 blood tests even when you are on injections and using the figure to stop injections.

I would print off b12 protocol for treatment. It has a page of symptoms including headaches that I needed it for. I can't find the post. I think it's from b12 deficiency charity support group. ?sleepy bunny.

Gps do have discretion. One of the gospel I saw thought b12 levels of 106 was a 'redherring' but didn't go on to say why. He was saying this looking at my brain MRI scan report!! He then did a complete turnaround around watching as I started to make improvements. I went to other gp after he refused to restart loading doses. He then said on the phone one size does not fit all and the symptoms should be treated. Also ask if they have done everything other test to give a reason for your daughters symptoms if yes then if b12 tablets have not worked push for a trial of b12 injections. They need to look at the bnf and Nice guidelines ect . All on here. I hope your daughter improves with the right treatment.

[Ritchie1268 in reply to Nackapan]

Thank you Nackapan.

Yes she's had tests for other things as I asked for a print out last time.

She only had this test last week & the range is still 197-771 so I think it varies from surgeries & or labs etc.

She didn't say what type of consultant & I forgot to ask.

I didn't know the GP as she goes to a different surgery to me.

But when she said she is 1 point off being under range, I couldn't believe she said she's not allowed to try her on the loading doses.

I didn't get a print out this time which I should've done, because if she is 1 point above lower limit, then it's dropped more than the 88 I said in original post.

She said she'd ring my daughter once the consultant gets back to her. If she says no action I'll go with her again to try sort it out.

Thank you

[Nackapan in reply to Ritchie1268]

Yes and akso state if it's a serum b12 test it only shows the total amount in her blood. A high % csn be inactive . It sounds ridiculous if they stick to that cut off if she is having symptoms. Si hard when it's for your daughter. My daughter is borderline hypotthyroid and clearly had alot of symptoms but is not getying treatment. She is b12

deficient too but has been for a couple of years and has injections and knows theses are different symptoms. Hard to fight their battles but si annoying their gp not treating them. Hope it gets sorted soon

[Ritchie1268 in reply to Nackapan]

Thank you.

It's horrible to see her struggling which is why I went with her.

I asked for an active B12 blood test but they obviously did the serum.

I told the Dr if I had to I would inject her myself but I won't due to worry of anaphylactic shock on first.

I'll keep going with her till she gets sorted or will find another Dr who will help 👍

[Sweetcheeks832 in reply to Ritchie1268]

Surgeries, anesthesia, antiinflammatories cause depletion of b 12 at rapid pace. Most of the levels I see show the low as being 299. So if she is 200, then that is pretty substantial. Celiac and intrinsic factor antibody testing is in order. That's the only way you'll get the answer to why she isn't absorbing. In addition, if vitamin d is low, b12 is almost always low too. The parital cells that allow the body to absorb has issues with both of these in tandem, along with iron.

[Ritchie1268 in reply to Sweetcheeks832]

Thank you.

I asked the doctor to do an IFA but she said she couldn't find it on the computer to print off a test for it, which I found strange. That's when she said she'd send her results to a "consultant"

I told her for it to drop by 88 in 4 months she obviously has an absorption problem. She agreed "something was strange"

Hopefully this consultant will tell her to trial some injections, otherwise I'll have to look at moving her to my GP surgery.

[deniseinmilden]

Yes, definitely heard of it lots of times over. So much so that Foggyme and Sleepybunny have collected documents together to take to the Dr's to help argue people's cases and you'll find them in their replies. If you need me to post links to them please ask.

As you know she should be treated ASAP to prevent further damage.

Definitely worth changing Drs. If they are that bad about B12d then how bad are they about other things?

My friend, a nurse, took her husband to their local hospital and gave him his first jab there in case of getting a reaction because she knew she couldn't get much closer to a good place to treat him if he did have a reaction!! (He was fine and is getting better with regular jabs from her now).

Well done for being proactive for your daughter and good luck with doing her jabs. I'm sure she'll start to feel better soon, like you did!

[Ritchie1268 in reply to deniseinmilden]

Thank you Denise, I'll let you know if the outcome.

[deniseinmilden in reply to Ritchie1268]

🍀🤞

[Ryaan]

She should be prescribed 5mg Folic Acid one a day for 3 months.

Her B12 is low so she should be put on injections....at least 6 loading doses and 2 monthly injections.

Depending on how bad her symptoms are she may need more frequent injections than a 2 monthly injection which is most likely the best she’s going to get unless you have a good B12 knowledgeable and understanding doctor which is rare.

I had to inject once a week for a 3-4 months before I felt better.

Frequency of injections all depends on how bad her symptoms are.

I’m not a medical doctor so please get some professional advice.

Ferritin and Vitamin D should also be checked.

[Ritchie1268 in reply to Ryaan]

Thanks Ryaan.

Her Vit D has now gone right up as she was low before, could be the few days of sunshine 😁. Folate is low also but I'd rather wait & get her B12 up first, (once I convince them to treat her that is).

I know what you mean, I'm still SI every other day since Xmas.

[Vicky2822]

Look st Viapath. It’s the blood test clinic at st Guys hospital in London. It is used by the hospital but also does private tests. I believe GPs have to recognise the results as it’s connected to the hospital.

They do a full b12 test which includes active b12, MMA and another one starting with H (sorry brain gone blank). I’m not 100% in the cost but I think it’s around £200. If you don’t live nearby I think you can get them to send the kit and ask the nurse at the GPs to take the blood. Might be worth a look as this would give a better picture and hopefully show yushe is deficient at cellular level. ( I think it is very hard to get these tests done on the NHS but you could ask your GP or say if you pay for them can they take the blood).

This is a very common situation with being just above range - even though the guidelines talk about symptoms and treating a level below 200, especially with the hereditary link. It’s all about money they really don’t give a stuff if your suffering. If your in range they don’t have to treat you and you can’t sue them for negligence. They do the minimum to keep you alive now. Not the maximum to make you well. It’s very sad.

[Ritchie1268 in reply to Vicky2822]

Thank you & sadly I think it's a sign of the times with so many cuts everywhere

[Buckley123]

You can get injections privately for around £30 see if this helps whilst you fight the battle of the gps

I have a lot of neurological damage hopefully due to b12 as all my other tests are negative I was first diagnosed with ms as I have scarring on the brain later to find out it can be caused in rare circumstances by b12 deficiency. Take care jade xx

[Ritchie1268 in reply to Buckley123]

Thank you Jade.

Luckily, (I know that's not the right word!) I have PA so thanks to the help of the great people on here, I'm pushing to make sure my daughter doesn't go down the same road I did before being treated & from my experience I'm hoping to fight her corner to get the help she needs.

[Cherylclaire Forum Support]

I was very lucky: I got injections when serum B12 was 196ng/L- with range being 197- 771 ng/L. 1 injection every 3 months saw me get worse very quickly however.

For this reason, my MMA was tested along with my B12 serum level: MMA was raised with B12 at >2000 ng/L. MMA should have dropped very soon after loading injections started. Who knows what MMA level was prior to injections ?

Active B12, MMA and Homocysteine tests are all unlikely to be available at a local hospital lab. But ALL of these are available via NHS - I have had all of these tests done. MMA at least 5 times now and this is an expensive test. But every time it was raised : between 350 - 400 nmol/L with a range of 0- 280 nmol/L. Active B12 and Homocysteine came back as "normal". I've never had to pay.

The only test I have paid for is a full-panel Thyroid blood test by post - because NHS usually offers only TSH and T4 . I had 6 tests done for about £60 so I thought it was worth it. Thyroid can struggle if B12/ferritin/folate/vit D problems - mine was beginning to. I will do it again, just to see if it has improved, as my B12 symptoms have now finally.

NOTE: 5mg folic acid a day for 3 months is an extremely high dose. I wouldn't.