Recent B12 diagnosis

[leannec23]

Hi

I'm new to the forum and was wondering if anyone had an views on my situation.

I was diagnosed with under active thyroid in 2013 and have been on levothyroxine since then. This seems to be ok and was told by my Dr my levels were within range at my last blood test in August.

About 2 months ago, I started having tingling sensations in my left arm and feeling like a dead arm. I have also had sharp pains in my chest, always in the same place and when I think about it have had these on and off for several years, mostly they go very quickly. However, the visit to the Dr was prompted by one of these chest pains which lasted a good couple of hours. I had a chest X-ray which was clear. After a couple of weeks was still having the numbness and gums were bleeding quite badly, shortness of breath. My digestive system has always seemed to be all over the place but did read this was a sympton. Another trip to the Dr. He looked at my blood history and said I hadn't had my B12 tested for a while so had the usual full blood tests plus B12. All came back ok apart from B12 which was abnormal so had another test. I'm not sure what this was, a different type of test or the same to check the levels again. Anyway, phone for result and the Dr had marked it as no further action needed as result was borderline. By this point I had read up on B12 deficiency as was surprised by the result as could identify with so many of the symptoms. I then booked a telephone appt with the Dr, explained that I had many of the symptoms. Dr said levels were 195 and range was 197-800! However, after hearing symptoms he said I could have injections and prescribed a course of 5 over 2 weeks, then 1 injection every three months thereafter.

I've now had 4 injections, last to take place on Monday. The last couple of weeks, I'm having fluttering in my chest. Worst was one evening, went on for about 6 hours until finally I fell asleep. I have had palpitations in the past, I think due to thyroid issue, but the hard fast hard heart beat type, not constant fluttering. Then Wednesday I had what I think was an anxiety attack, racing heart, shortness of breath, dry mouth and shaking legs. Not nice to experience when driving! Felt like I was having a heart attack which as you can imagine with previous chest pains it wasn't far from my mind!

I've been looking on these forums and the PAS website and had a few questions and wondered if anyone any any views?

Firstly, could the anxiety be related to the b12? Either deficiency or injection?

Could the palpitations be linked also? I've read that they can be a symptom but also a side effect of injections?

Is it possible the 2nd blood test I had was to check for PA? Just wondering why Dr suggested injections and not supplements.

I also cannot remember memories from the last like childhood etc and after reading up wonder if there some neurological issues.

Lastly, I have also read that gluten can be linked to palpitations. The evening I had constant fluttering in my chest started shortly after eating a pasta meal with garlic bread, hence lots of gluten!

If you have got this far in my post, thank you! I did not realise it would be this long untili started typing so many thanks for reading it and any of your views or advice is most welcome!

Leanne.

[Gambit62 Administrator]

anxiety is definitely a symptom of B12 deficiency.

There have been a few post recently in relation to palpatations - certainly seems to be a symptom that some people experience but I'd have to look back through them to remember what the conclusions were.

Have you been tested for coeliacs? even if you haven't it doesn't rule out a gluten intolerance and gluten intolerance can lead to absorption problems affecting other vitamins and minerals - including B12.

I sometimes get really bad heart burn from pasta - but for me it seems to be alleviated by taking something acidic - which would fit with low stomach acidity being related to my B12 absorption problems.

The symptoms of B12 deficiency overlap with a number of other conditions and having one doesn't rule out having several - particularly if they are auto-immune in nature.

Some people also experience heightened anxiety when they start taking B12 - infact symptoms generally can get more marked before they get better - particularly those related to the nervous system. This could be the effects of B12 on the nerves themselves (role in maintaining the lining around nerves) or could be down to the role in recycling neurotransmitters and hence changing the way signals from nerves pass through to the brain and are processed in the brain.

Can't really answer on what test your GP did - best thing to do would be to ask - if you are in the UK you are entitled to copies of your test results ... and similar situations apply in most other places. Other possibilities would have been MMA to clarify what is happening with B12 at cell level, a full blood count to look for any macrocytosis - a common form of anaemia associated with B12 and folate deficiencies.

injections are the usual treatment for absorption related problems - PA is one - and your diet would have to be really low in B12 for diet to be the source of the problem. PA is also the most common absorption problem but there are other possibilities including gastric surgery affecting the ileum, drug interactions, lowering stomach acidity (which could be the source of your gastric problems - but has pretty much the same symptoms as low stomach acidity).

You mention 3 monthly shots but your post clearly mentions neurological symptoms. GPs often miss the fact that there are actually 2 treatment protocols for B12 absorption problems - one if there are no neurological symptoms - which is the one your GP is using - but a more generous one if there are neurological problems - shots 3x week until symptoms stop improving (review at 3 months) and then 2 monthly maintenance - refer to the BCSH guidelines which I think you can find in all the information in the pinned posts.

[leannec23 in reply to Gambit62]

Thanks for your reply 😊

I have never had anxiety problems before, well not symptoms that I have had recently but wonder if more subtle symptoms have been there before and the treatment has enhanced it. I've read up on this too and they say there is often a trigger. I think mine is healthy anxiety more than any others and we recently had a cancer diagnosis in the family so I think that was the trigger.

I have thought about asking to be tested for coeliacs especially as I read on the thyroid uk that it should be tested for upon diagnosis of under active thyroid so think I will definitely do that.

I'll also ask for more detail about the tests for B12 and what the treatment is based on.

I've not had surgery so can rule that out.

I will have a look at the guidelines and arm myself with as much info for my appt next week!

[Foggyme Administrator]

Hi Leannec23. Hello and welcome. I'm really sorry that your having such a terrible time and. Dry well done for persisting with your GP...it was exactly the right thing to do. A level of 195 in the reference range you quote definately makes you B12 deficiency - not borderline. And even if you were low in the refernce range, your GP should treat your symptoms, not your blood results. All the guidelines state this.

I'm really sorry, but I don't have a lot of time right now, so if I may I'll jump to your questions first:

Yes, anxiety is a recognised symptom of B12 deficiency. And some people report that when they first start injections, their symptoms seem to worsen slightly before they get better. Some say it because everything is 'waking-up', but nobody really knows why.

The same goes for palpitations. But if these get worse or become more persistent, or last for a long time, you should get checked over by your GP (or a walk in centre / A&E if out of hours). Not suggesting this is necessarily a problem but it's always best to be cautious - especially if they are bad enough to frighten or worry you.

I doubt that that the second test was for PA (for this the trst is anti-IF antibodies). Some GP's do test serum B12 again, if deficient (you were the first time - and the second time). Not sure why but think it shows a lack,of understanding about B12 deficiency.

Not sure about gluten - not something I am very good at, but perhaps others will be able to comment.

And the most important thing - neurological symptoms. If you have these, then your GP has not put you on the correct regime of B12 injections - you need the neurological regime. This is important as undertreatment in the early stages can result inpoetentially irreversible neurological damage. I say this not to frighten you, but to let you know so that you can chase your GP, if necessary.

Have you read the PAS pinned posts to the right of this page? They'll give you lots of iformation about diagnostic processes, treatment and all the relevant guidelines. The second pinned post also contains a symptom checklist so,you'll be able to check to see if you have neurological symptoms, and you'll probably find you have other symptoms that you didn't know we're symptoms 😀.

I'm really sorry but I'm out of time. Don't like doing it like this but if you look at the post 'B12 Deficiency' by Natty91, there's a reply I wrote about halfway down. It contains lots of information that is relevant to you and that you'll find useful. (Also contain information about what tests your GP should be doing).

Here's a link to the post: healthunlocked.com/pasoc/po...

B12 deficency is quite complex and there's quite a lot to take in, especially in the early days - but don't worry, there a lots of folks here who can help and advise as and when needed. Just post anytime you need help.

Take care and please let us know how you get on 😀

[leannec23 in reply to Foggyme]

Hi Foggyme, thanks for your reply 😊

I have an appt with another Dr next Week who has an interest in heart disease. My mums side of the family has SVT (mum) and AF (uncle who is mums twin) so think I definitely need to push for that to be looked into too.

I will also ask about the treatment as it doesn't seem to be right.

I think in may have read your post to Natty91 so will read through again.

Thank you!

[pugdogs10]

Hi.. many people who have hypothyroidism/ hashimotos are coeliac as well, it is very common. Your GP may have tested for it already, if not It is well worth asking for the test to be done.

[leannec23 in reply to pugdogs10]

Thanks pugdogs10, I did ask if had been tested when I had the original bloods done, receptionist told me it hadn't so def going to ask next week.

[miglet54]

You are entitled to 1 b12 injection every other day until no more improvements are felt by YOU.

[leannec23 in reply to miglet54]

That's good to know, not sure what the muscles in my arm will make of that though!

[miglet54]

You can have them in your thighs to, spread them out.

[leannec23 in reply to miglet54]

Good idea. My last one is Monday and then appt with Doc is Thurs so will be good to see what happens with symptoms between then. My first was a Wed, then a Fri. Next was due on a Monday, but nurse off so booked for Tues. Other nurse then broke her arm so got moved to Wed. The worse palpitations happened the Tuesday night so wondered if it was the length of time between injections that caused them. Maybe I do need them for longer if it happens again.

[miglet54]

Ask the doc to look in his or her BNF book. The b12 advice for doctors is in there, ir was reworked in 2014. My GP was anazed, she hadn't a clue.

[leannec23 in reply to miglet54]

Great, thanks for the tip, I'll do that