Pernicious Anaemia Society

B12 Def treatment but not better could it be my thyroid or am I looking for things that aren't there?

So I've been counting down the days to my first 3 monthly b12 jab after loading doses in November had it 2 weeks ago and although things have improved I am still tired and getting itchy skin and twinges in my wrists and ankles are coming back too.

Last time I spoke to my gp she said if I didn't get better with 3 monthly shots then it wasn't b12 causing the symptoms.

Someone on here queried my thyroid function on another post i made and i knew this had been tested ok - I have gone back through all my blood tests and found in Jan last year tsh of 2.9 range (0.3 - 5.5).

I was told this was ok and back then never thought to question this along with my 187 b12! However I have researched a bit now and understand that anything above2.5 is considered the new limit - is this worth pursuing or am I just looking for things to be wrong starting to feel like a total hyperchondriac but just want to feel normal again!

Main symptoms are tiredness itchy skin brain fog and weight gain ( over a stone in a year with same diet and exercise)

4 Replies

your GP is incorrect in asserting that it couldn't be B12 if you aren't responding to the B12 injections at 3 monthly intervals. From what you say you are responding it is just that the B12 isn't lasting you for 3 months. You really need to keep a diary of the symptoms and pin-point when different ones are improved by the shot and when those symptoms start to come back.

There is no real evidence that anyone has been able to come up with that supports the 3 monthly maintenance shots the UK uses for people who don't have neurological involvement. When hydroxocobalamin was first introduced in UK the frequency for maintenance shots was monthly and everything seems to point to cost being the driver to 3 months rather than clinical evidence that this is really the best interval. People do vary a lot in how much they need - particularly after they have had loading shots - making the use of averaged treatment periods far from ideal, so very likely that you are undertreated at the moment.

Having said that though - weight gain would suggest that there could be a thyroid issue as well. Suggest that you take a look at and consider reposting on the TUK forum

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Thanks Gambit. I agree I feel as though my b12 should be treated regardless when it has been below 200 for well over a year IF test came back fine but I know that isn't a good measure for pa anyway. Think I'm just worried that if I go back they will stop the b12. I'll try posting on tuk as you've suggested thanks as always I'm becoming a bit of a serial poster!


Your doctor is totally wrong with that assertion . The same happened to me , and my doctor hinted that I was imagining things . She would not change her opinion although I had numb feet and was becoming very confused and giddy after the initial improvement of the loading doses (5 in two weeks in Gloucestershire ). In desperation i started to self - inject And that has changed my life .

By all means get your thyroid checked, but apparently the bog -standard test is not thorough enough according to the thyroid web site . So get a good one ! Maybe get a DIY kit online ?

The cost of B12 injections is ridiculously low . It costs me under £1.00 for one injection -----ampoule, 2 needles , syringe and swab - buying in bulk ( 100 of everything ) so I cannot see that as a reason to deny B12 injections when pharmaceutical drugs cost loads loads more . The NHS can do it for less . So what is the reason ? ?????? I would love to hear what other people think !

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Others here have addressed the B12 issue, but I would add that your TSH is far too high, even if it is just within range. Your reported level indicates hypothyroidism, which may well be causing the symptoms you describe. You need a full thyroid panel: FT4, FT3, TPO antibodies and TG antibodies (the latter two determine whether the hypo-T is caused by Hashimoto's). You ought to be able to get this through your GP, but many people have difficulty and test privately through Blue Horizon, or one of the other private labs.

Most people don't feel better until TSH has been driven down by treatment to 1 or below. GPs tend to become agitated when TSH is suppressed, without understanding that it's an inevitable consequence of treatment. More info is available on the HU Thyroid UK forum, which is very friendly and helpful.


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