Advice

[Tinal25]

Im looking a bit of advice please, last year i was getting b12 injection from the gp every 3 months, the gp tested my b12 and it went very high over 1847 and said to stop but recently my bloods were 321 again. Is this low for me to ask for b12 injections again?

[Jo5454]

Yes!!! It was wrong of the Dr to even test for b12 levels if you’ve been diagnosed with PA or b12 deficiency.

How are you feeling, have your symptoms worsened?

In terms of what’s high, mine has been over 5000 a few months after my first loading dose and on monthly injections, but was soon back to a 1000ish again when I settled into them, got iron levels up, etc,

Many will no doubt answer you, hope you’re soon given those injections back.

[Tinal25 in reply to Jo5454]

Thanks for quick reponds. I dont eat any red meats and i have started supplements. My hair falling,headaches and heart beating faster ect

[Libuse in reply to Tinal25]

Get your thyroid tested. Hypothyroidism and B12 deficiency often go together

[Tinal25 in reply to Libuse]

I had recently had mine tested and the gp has said i have low tsh and referred me to a endo for subclinical hyper

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[Tinal25 in reply to Libuse]

Xx

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[Tinal25 in reply to Libuse]

Xz

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[Tinal25 in reply to Jo5454]

They tested me for PA and it was negative

[Hockey_player in reply to Tinal25]

The PA test has a very high false negative rate.

[Jo5454]

Hi, that doesn’t mean you haven’t gotbPA,as you probably know, it can take many tests before it shows up as positive?

With those symptoms that Dr should be giving you back your b12! Did you find 3 monthly kept all the symptoms at bay? How’s your iron/ferritin/vut d/ thyroid levels too?Sorry you’re suffering because of it and hope you soon see an improvement…take care

[Tinal25 in reply to Jo5454]

My tsh has been low also up and down

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[Cornwaller in reply to Tinal25]

Your results are not really up and down. They are pretty consistent. The variability is caused by the actual level in your blood changing as a result of any number of variables which is what it is supposed to do. In addition the laboratory method of analysis will have random variability or error. Put these two sources of variance together and the results bob around a bit but are essentially similar and your tsh is fairly low.

[Tinal25 in reply to Jo5454]

Xx

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[Tinal25 in reply to Jo5454]

Xx

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[Tinal25 in reply to Jo5454]

Xx

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[phoebegrant in reply to Tinal25]

Your Vit D is really low. It should be in the 100s to support other deficiencies. Are you being treated for low Vit D?

[Tinal25 in reply to phoebegrant]

I have mulitvitamin. Thats all

[phoebegrant in reply to Tinal25]

Vitamin D within a multivitamin will not be sufficient to raise your levels - it is primarily to 'maintain' a healthy level. I can't advise you with any certainty since my levels were unmeasurable with the lower lab figure of 10 nmol/L and I needed more intensive treatment. Please seek more help, or check for other comments here. When my Vit D was so low, everything else seemed to go into freefall.

[Tinal25 in reply to phoebegrant]

What vit d do you recommend ? Thanks

[Tinal25 in reply to Jo5454]

Xz

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[Tinal25 in reply to Jo5454]

I have been tested once for PA. The gp referred me for low tsh to endo and has advice to take medication witch i havent taken has im not sure and would like a second opion. My hair was falling less and helped with tired to

[Tinal25 in reply to Jo5454]

I wasnt aware of many test for it to show? I dont eat any red meata eaither

[Tinal25 in reply to Jo5454]

I aslo had these down a while back what does these mean? Thanks

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[Nackapan]

You need yo go back as you are getting symptoms. Your b12 dropped quickly once b12 stopped and will probably continue to do so .

If you've never eaten red meat znd not been deficient before you probably have an absorbtiin problem now.

As diary ,chicken, eggs ect contain enough abd an oral B1w tablet would top you up if necessary .

B12 should not be tested once once on injections .

It's in their guidelines.

Was your folate

Ferritin

Iron okay?

Vit D in Hindsight was thd first Indication my body wasn't absorbing well .

Az had plenty of outside time .

Your symptoms are the main thing.log them.

Many symptoms overlap with the things .

Hopefully you can decipher what's got worse after B12 injections stopped.

I had hair loss and heart palpitations shakiness with low ferritin

Headaches/ migraines,fatigue,indigestion issues ,vertigo, sight issues amongst other things was B12 deficiency for me.

Get your B12 reinstated .

3 monthly is not a big ask !!!

Shoujd never had been tested and stopped if keeping your symptoms at bay .

Get thorough thyroid tests .

Thyroid forum can help you

[Tinal25 in reply to Nackapan]

I posted my recent ferritin. My hair was falling less and it helpes my migraines. My b12, iron and vit d have always been in the lower side. Can they test for absorting? My tsh is always low and recently had my thyriod test done. I posted it on the forum

[Mozza127]

I thought u can't have to much b12 ...

[scnuke]

If you are not taking any thyroid medication, such as levothyroxine, you need have this followed since your bloodwork has you teetering on the edge of hyperthyroidism, possibly Graves. This could certainly explain your hair loss and palpitations. Your ferritin is fine. Tests for B12, as others have said, are not very reliable and doctors are hesitant to treat solely on symptoms. I would get your thyroid straightened out first, then work on the B12. Your B12 blood levels mean nothing once you have had injections. Best of luck to you.

[Tinal25 in reply to scnuke]

Hi thanks im not on on any medication for thyriod. I seen a endo and he said im subclinical hyper,he has described me carbimazole nut yet not taken then has im on the fence. When i post on forum and facebook groups, they telling my bloods are fine and not to bad. Not sure why the gp has given me a referral and medication. Im so confused just not sure where im at.

[scnuke]

Everyone reacts differently when your TSH starts dipping below 1. There is normally an inverse relationship between TSH and T3,T4. Hair loss and palpitations would be my first clue that my thyroid is the culprit. A trial of the carbimazole for 3 - 4 months would not be a bad idea to see if anything improves. I had Graves when I was younger and most of my hair and beard fell out, my heart was constantly pounding, and I was a nervous wreck. Now that I am a lot older, I have hypo, and I can tell if my levo dose needs to be adjusted. For me, the thyroid symptoms are different than my PA or IDA symptoms. I hope you feel better.

[Tinal25 in reply to scnuke]

They tested my antibodies , it was negative. I had a scan on neck everything was fine. What other test do you think i should request from the gp?

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[scnuke]

Personally, I do not think you need any more tests right now. IMO, one of the answers is in front of you. I am NOT a medical doctor, but I did have over forty years of experience in Nuclear Medicine and Ultrasound as a clinical technologist. Try to get some B12 injections on a regular basis as they cannot hurt you and try the carbimazole to see if it eliminates or reduces some of your symptoms. The path to healing is rarely straight, especially when it comes to endocrinology and hematology.

[Tinal25 in reply to scnuke]

Thank you, i will give them a try.

[Hockey_player]

If you have pernicious anemia, the doctor should NOT be testing your B12 levels and you should NOT stop (ever) getting B12 injections.

[Tinal25 in reply to Hockey_player]

I have been tested for PA and come nack negative

[Jo5454 in reply to Tinal25]

A negative result doesn’t mean you haven’t got PA. Some people do that test many times before it shows as positive. I’d get back on your injections, work on getting that vitamin d up, your Dr should help with that and follow the great advise from others about asking on thyroid site and sorting that out, Take care

[Tinal25 in reply to Jo5454]

I will do thanks. Also can i get this tested privatly ?

[Jo5454 in reply to Tinal25]

Hi, sorry for slow reply. Yes,it's available from the various testing companies. Trouble is at £100ish,it's pretty expensive considering it can take more than one try for many! Take care...