Overwhelmed: Hello, I have been having... - Pernicious Anaemi...

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Overwhelmed

Pinn14
Pinn14
β€’11 Replies

Hello, I have been having a whole host of symptoms since November 2017 including neurological (pins and needles, stabbing pains, muscle spasms and burning sensations), tachycardia, weight loss, hair loss and generally feeling unwell.

My GP diagnosed anxiety so I consulted a private neurologist. He ordered tests and I have raised MMA in both my blood and urine although apparently not enough in the urine to point to an inborn error of metabolism. The neurologist asked me to retest for serum and urine MMA as well as homocysteine and methionine. I'm waiting for the results.

In the meantime I pleaded with the neurologist to ask my GP to trial B12 injections - I had my fifth and final today but the GP will not give me anymore for 3 to 6 months because my serum B12 tested at 386 and he says my symptoms are too varied to point to B12 deficiency. I do feel a little better - more energy and less wakeful nights plus the whites of my eyes are losing the yellow tinge that appeared around Christmas.

I think I have nothing to lose by self injecting while awaiting the results of the second line tests and a firm diagnosis.

Does any of this sound familiar to anyone? Will I be wasting my breath arguing with my GP to follow the NICE and BNF guidelines where a patient has neurological symptoms?

And finally is there any evidence to show whether IM is better than SC?

Best wishes

11 Replies
oldest β€’ newest

Hi Pinn14 Another Gloucestershire casualty of our misguided and outdated Guidelines. You can see them on Google.

Someone on here will post the links to what the NHS says you should be getting, or read the pinned posts on the right.

Can you post your original blood results with ranges (before you had your 5 loading injections) on here. eg. vit B12 124 < 180 -1000. You are entitled by law to have them.

Yes it is very familiar, like hitting one's head against a brick wall.

Pinn14
Pinn14
in reply to beginner1

Hi there, it was 386 before the loading dose but I had been supplementing with a spray. In May 2016 it was 239. I have clinical symptoms and elevated MMA so I assume there is an absorption problem or possibly something going on with my kidneys. The GP won't do anything else to help with a diagnosis until the latest MMA tests come back. I think I need an endoscopy and my kidneys checked out. The GP is relying on my blood serum level when he should be treating my symptoms.

From information that I've gleaned from another health forum, any b12 tests once you've started treatment will now not show an accurate result. In addition, any blood serum test now will only show that you are absorbing the b12. Any supplements will raise the blood serum level.

You did well though to have your loading doses through the NHS. Whether your GP will abide by the BNF/NICE alternate day guidelines for neurological symptoms remains to be seen. I expect you know that low b12 can cause anxiety.

I think it's a matter of personal choice whether IM or SC is better. I'm not sure if there is any evidence out there as to best method. Some start with SC then build up to IM. I don't feel that my neuro symptoms of balance problems and swimming head are sorted so much by SC so have done IM for over 7 months. I still need the alternate days.

There will be lots more guidance in previous posts if you do need to go down the SI route.

Have you had your vitamin D, folate, iron and ferritin checked? The hair loss could be low iron or thyroid problems. It's not just the TSH that needs to be checked. The Thyroid forum on here are very helpful and knowledgable.

Good luck πŸ˜€

Pinn14
Pinn14
in reply to Highland49

Thank you. D3, folate, iron and ferritin were all in the 'normal' range. I had thyroid checked last October and TSH, T4 and free T3 all within the 'normal' range - but thyroid peroxidase antibodies were raised at 36.5 (range given was 0-34), I was told this was nothing to worry about and to have it checked again in a year.

GP has only given a loading dose of 5 injections and said I would need to retest B12 in 3 to 6 months before they will give any more. So no, they are not following the NICE/BNF guidelines or those of the British Association of Haematologists. I have ordered my own B12 from Amazon.de and now have to order needles etc.

While I am awaiting a diagnosis for my symptoms I see no harm in continuing with the B12.

Yesterday I enlisted the help of a private GP to liaise with the neurologist and my GP to focus investigations.

It's the neuro symptoms which most concern me and the weight loss. Have you noticed much improvement in the seven months you have been doing the alternate day injections? I have days when I seem to feel better and next day things are worse than ever.

I just want my old self back.

Highland49
Highland49
in reply to Pinn14

It's good that you don't have long to wait before you have your thyroid rechecked. But good that the TPO antibodies are in the normal range. If your TSH comes back as higher than 3, that will show that your thyroid is struggling. But if you have Hashimoto's, your TSH can fluctuate so gets more confusing.

Some GPs have rechecked, against the guidelines, the b12 blood serum after treatment and then have stopped any further injections so it's good that you're going to SI. I was really lucky that my neuro symptom of balance problems went really quickly, in a matter of days. I hoped that the b12 would help my shortness of breath but I think that's thyroid related, hence mentioning your thyroid.

So most days my "b12 symptoms" are only occasionally in the background but fatigue and lethargy has been a real problem. If I'm stressed or ill, I need to inject more. Others that I've read about have needed a year of injections before they really felt better. It's good that your neuro symptoms haven't been around for too long, so this can give you hope that those will go quite quickly. But of course, we are all different.

Taking your cofactors of folate and iron will really help. If you're suspicious that you're getting the usual "in range" response, you can post your results on here. Folate should be near top of the range at 17 or more and ferritin 80+. Vitamin D 125 nmol and over. Potassium when you're having injections is important, otherwise you can feel a bit peculiar! Bananas and coconut water and the like.

I hope you get to the bottom about the weight loss and tachycardia soon. Take care.

Pinn14
Pinn14
in reply to Highland49

Thank you. Folate in January was 17.6 . Not had ferritin checked since May 2016 when it was 83. Last vitamin D test was Feb 2017 when it was 116.7. I've been taking D3 regularly but will get that checked again. I could do with some sort of lab test analyser!

I'm eating a banana every day and otherwise eat well. How much folate and iron should I be taking if I SI 3 times times a week? The B12 arrived today, waiting on the needles etc.

Highland49
Highland49
in reply to Pinn14

Brilliant that you're almost ready to start SI. The trouble is with iron, too much is also not good so be good to know your up to date result is before you start supplementing. Or having high iron and high folate foods would be an alternative if you like liver 😳

You could take 5mg of folate or folic acid initially to help the b12 absorb then reduce to 400mcg. That's only a suggestion though. The iron as per packet instructions. You may need to try a couple of types. I usually take ferrous glycinate as easier on the stomach.

Your vitamin D was good and just to mention that you need k2 and magnesium to help the absorption and ensure that it reaches the bones and not soft tissue.

Hopefully your levels are still all good which will help reduce your symptoms more quickly. All the best.

Pinn14
Pinn14
in reply to Highland49

I'm using magnesium oil spray (homemade!) daily and have been taking K2 on alternate days but need to replenish my stocks.

Thank you for all your guidance on co-factors.

Best wishes

Marz
Marz
in reply to Pinn14

When you are told 'normal '- they of course mean in range - but it is where you are in the range when it comes to interpreting thyroid results. The TSH in a healthy person is around 2.5 - the FT4 and the FT3 are better towards the upper part of the range. Do you have the actual results with ranges - as labs do vary !

Anti-bodies - in addition to the TPO there are also Tg anti-bodies and rarely tested within the NHS. Private Testing with Home Testing Kits are available through Thyroid UK - link below - Click onto About Testing on the Menu to view the companies Medichecks and Blue Horizon - used by 1000's on Thyroid UK in order to have the correct testing done and a better chance of a diagnosis.

thyroiduk.org

Hope you soon feel better and find some answers ....

Pinn14
Pinn14
in reply to Marz

Yes, in October TSH was 1.51, free T4 17.1 and free T3 4.6. Tg antibodies were 13.7. Not sure what that says about my health. December TSH was 1.1 but bloods taken at a different time of the day and done by a different lab. Is there someone out there who can interpret these for me?

Marz
Marz
in reply to Pinn14

Do you have ranges ? Labs vary. Ranges are the figures in brackets after the result. At a glance they look fine 😊 TPO antibodies not there ...

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