I've been here before asking for advice and hopefully someone can help.
I'm 44 (as of last week) and have Hashimotos disease. I'm currently on 50mcg Levothyroxine and have been on this starter dose since January. My GP won't increase it despite my showing symptoms of being undermedicated.
I have a history of low B12 - diagnosed 9 years ago - and was given quarterly injections until I became pregnant in 2012. After that the doctor said I no longer needed them. We've since moved to Scotland so I'm registered with another surgery. But prior to that, in 2017, I started with gastritis and reflux and ended up seeing a GI consultant privately (out of frustration). The gastritis is atrophic and ongoing, but my blood tests for anti parietal and intrinsic factor antibodies were negative. The consultant said these could be skewed as I was taking sublingual B12 at the time in the absence of injections.
Two months ago I noticed my feet were burning (I thought it was chilblains initially) but this progressed to tingling which lasts all day and often wakes me at night. I was also getting the same sensation in my fingertips and then started getting numbness in my left ring and little fingers whilst in bed. On waking my finger joints are really stiff and sore. I also get palpitations, dizziness, headaches, brain fog and often - in the mornings particularly - feel pretty shaky and jittery.
My GP tested my B12 but said the cells aren't enlarged. I sent her some information from various links given to me on this site re. B12 testing and symptoms, and I'm going back this morning for more bloods. I supplement quite heavily with sublingual B12 (up to 5000 mcg daily) so that could well be masking any problem.
Other symptoms include icy extremities, feeling very cold all the time, tiredness and lack of libido. I had a private blood test done in January and am about to do another. I know that Hashimotos can trash your iron, vitamins D and B12, and folate, and sure enough my levels show this. My iron in particular is at rock bottom (GP belligerent about my getting privately tested; dismissed the low iron - the usual story).
So I think some of my symptoms can be attributed to poor levels of vitamins and iron (which I'm working on improving) and also to the thyroid issue. I'm pretty enlightened on all this stuff as, of course, I get next to no help from my GP and often come away from there feeling humiliated and defeated so thank God for Health Unlocked.
Anyway: if you've stuck with this post so far, thank you!
What I want to know is, is it worth me trying self-injecting and if so, where do I get supplies? I'm already resigned to sourcing my own thyroid supplements and self treating as many others have had to do.
Also, I'm seeing a gastro consultant (NHS) next weekend. I fought like crazy to get this and so far have had an endoscopy (gastritis - they also discovered a small hiatal hernia), various tests - no idea what for, no results have been passed on to me; and a referral to a nutritionist (which keeps being cancelled) but I'll be asking about all of the above during my no doubt very short and dissatisfying consultation. Is a gastro consultant a good person to ask re. B12 issues?
Sorry for the long post. There's a lot going on and it's all a big, tangled mess. All my GP does is prescribe Omeprazole (I knocked that on the head as I suspect I have low stomach acid if anything) and infer that I'm neurotic.
You are showing all the signs of B12 deficiency . It could well be Pernicious Anaemia. The Intrinsic Antibody test for it is notoriously unreliable if it comes up negative. Also you can have PA without having enlarged red blood cells . Your doctor should know this .The oral supplementation of B12 could well be skewing results . You have a legal right to have copies of your results . So just ask for them
Gut problems go hand in hand with P.A. The low/no stomach acid ( Hypochlorhydria/Achlorhydria is a result of the attack of antibodies on the parietal cells which produce stomach acid and Intrinsic Factor , both necessary for breakdown and absorption of B12 . A gastroenterologist told me about the lack of stomach acid in PA patients .. I helped mine by taking a water-based probiotic called Symprove. ( expensive but effective ) But you can make your own probiotics ( sauerkraut , kefir , yoghurt, kimchi etc) it is significant that you also have Hashimoto's . Also an auto-immune disease like Pernicious Anaemia. Auto-Immune diseases seldom come alone . There is a delightful pick and mix selection to choose from , but you can’t do the choosing ! I have Rheumatoid Arthritis to accompany PA , but Hashimoto's is often a partner with PA .
I have to self -inject as the 3 monthly bog standard NHS injection is not enough. I have tried all other options to no avail -patches , sprays , sub-linguals . It’s vey easy and convenient to S.I. Also fairly cheap .some German online pharmacies will supply to U.K. .Namely bodfeld-apotheke.de - versandapo.de They are in German so you might need a translation app. You can also try Amazon.de . Search for B12 ampoules( Hydroxocobalamin) by looking for —- Rotexmedica B12 depot. Do put “depot “ because Rotexmedica also manufacture B12 Cynocobalamin , which the U.K. doesn’t use now . Prices vary , mostly around €6.00 for a pack of 10 . They have a use-by date of about 2 1/2 years . The courier charge is about €9.00 no matter how many you order . Delivery about 4-5 working days . You can pay with PayPal . Amazon.de is usually the more expensive option.
Every thing else -Needles , syringes, swabs and yellow needle disposal bins ( sharps boxes ) obtainable from - medisave.co.uk
You need to decide if you wish to inject I.M — into a muscle ( I use my thighs) or sub-cutaneously ( I don’t know anything about this ) At least you know now how to go about obtaining what you need if you decide to S.I. Best wishes .
Thank you so much. I'm doing a private blood test next week which will give me active B12 readings. I'll also discuss this with the specialist.
I have psoriasis too, and it's often said that autoimmune comes in threes.
I'll look into self injecting so those links are really useful.
Long term, I know that PA increases your gastric cancer risk and that's frightening as it's unlikely I'll get regular endoscopy surveillance on the NHS. I hope my little boy hasn't inherited this - he's only six.
Your journey/symptoms sound so similar to my daughter’s. She was fobbed off by the GI consultant as having ‘very bad IBS’! Endoscopy showed a hiatus hernia the confirmation of which from the consultant was cloaked in passive aggressive medical ‘speak’. He also said he would refer her to a nutritionist but this never materialised. When my daughter relayed her experience back to her GP they were furious as IBS doesn’t cause malabsorption! She has been referred for a 2nd opinion and a colonoscopy. All ‘tests’ to confirm PA have come back negative but thankfully her GP recognised her very low B12 and folate, put her on loading injections then folate. She is now on 3 monthly maintenance B12 until the GP has exhausted all other possible causes. (GP is surprisingly on the ball and focussed on her problems considering she’s in a central London practice!) I suspect she’ll stay on B12 injections for life. She takes Omeprazol which irritates me as I truly believe, like you, it’s a lack of acid that causes her symptoms. I know I’ve not given you any help, but I’m very interested to follow your current journey. Have you managed to find an alternative solution to the heartburn problem? As my daughter is in the midst of this malaise and trying to hold down a stressful job with brain fog I have taken over the investigation of her symptoms and possibilities for her to refer to her GP!
Thank you for your reply. Your daughter's lucky to have a GP who's actually interested and has at least some knowledge of this issue. Most importantly, one who is open to suggestions and alternative opinions. I had a great GP until we moved to Scotland 18 months ago. My doctor takes it as a personal insult if I so much as question his (rudimentary and blinkered) approach. The other two in the practice aren't much better, sadly.
The only time I've ever felt I'm getting anywhere is if I save up and have a private consultation, but seeing these specialists as an NHS patient isn't an option as they're either in Glasgow or Edinburgh (both almost 6 hours away). They send recommendations back to my GP, who then just dismisses them and I'm back to square one.
So she has a sympathetic doctor and that's a great thing!
Has she had any thyroid testing done? Hashimotos is responsible for the vast majority of hypothyroidism and causes low stomach acid, resulting in poor absorption of vitamins. People are often very low in iron, B12, folate and vitamin D. The NHS usually doesn't test for thyroid antibodies but you can ask a good GP or do a private test. Take a look at the Thyroid UK website, it's a mine of information.
As for the heartburn, there are foods which can aggravate it (mint, chocolate, fried foods, caffeine etc). I don't eat large meals and avoid any personal triggers. I struggle digesting red meat so avoid it a lot, although that doesn't help my poor iron levels! I was prescribed Gaviscon Advance which is useful but would rather address the root cause. I started taking a probiotic called BioKult and that seems to be having an effect. Sleeping on a wedge pillow, not so much - I just end up slithering down to the end of the bed!
If my stomach feels inflamed, raw cabbage juice is really good but best avoided with thyroid issues. It seems that whenever I find something, there's always something else to contend with... I use slippery elm powder too. Tastes a bit grim but it soothes the stomach lining, as do DGL licorice tablets.
Stay in touch - we can perhaps help each other out!
Thanks for those tips! I’ll mention slippery elm and DGL liquorice tablets. I think her ‘IBS’ cramps could do with soothing! 🤞🏻That you both get satisfactory outcomes. If she hits on anything revolutionary for her I will share. Best wishes
Have been reading your Replies concerning your daughter and as Littleisland has mentioned above it would be good to test for Hashimotos - TSH - FT4 - FT3 - Anti-bodies TPO and Tg. Rarely are they all tested in the NHS - sigh ! Having low everything - B12 - Folate - Ferritin and VitD is very common with Hashi's as absorption is poor. I do not wish to add to your daughters problems - but it is always good to rule things out
Proton pump inhibitors (gastric acid secretion inhibitors) such as Omeprazole are known to deplete B12, so I think you are right not to take it.
To find out if you have an acidic stomach or are low in acidity, there is a simple test which makes sense to me although my GP laughed at the idea. On waking, before eating, dissolve a teaspoon of bicarbonate of soda into a small glass of water and drink it. Wait. No burps = low acid. I think this was a suggestion from fbirder . I think there is also a short video clip on a reply to a recent post about this on here somewhere (anyone know the link?) If you do not trust this method, you might want to do it alongside someone who has a healthy amount of acid. It's quite amazing how strongly and quickly they will respond to this !
Also re. enlarged cells: macrocytic red blood cells may indicate B12 deficiency or folate deficiency but the lack of large red blood cells does not necessarily mean the opposite is true. BCSH guidelines state that neurological impairment occurs with a normal MCV in 25% of cases. These guidelines were brought out in 2014, and also say that the IFAB testis positive in 40-60% of cases, which means that it can be wrong (false negative) over half the time, so cannot be used to rule out Pernicious Anaemia. The British Committee for Standards in Haematology (BCSH) guidelines are there to advise medical professionals, so printing out the relevant page or pages might help you with your GP who seems to be in need of a bit of education regarding B12 deficiency. All the symptoms you describe sound familiar to me and no doubt will strike a chord with many many more of us here- not necessarily your GP or, sadly, gastroenterologist !
I've seen 3 gastroenterologists - who all seemed to agree that I have IBS. At least the last one actually tested me for things, and had to admit that this would not explain hair loss or bleeding gums etc etc.
I don't have IBS. Even if I did, a syndrome is just a bunch of symptoms and not a diagnosis. So entirely possible to have IBS and B12 deficiency, low ferritin and folate, vitamin D problems and osteoporosis of the spine, which are problems I certainly I do have.
Hashimoto's is an autoimmune problem, and autoimmune diseases love company. I think it would be a mistake for GP/ consultants to rule out PA as a possibility, certainly on the results of tests that BCSH find unreliable.
If you want to find out more, I would recommend Martyn Hooper's book "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency". It certainly helped me to understand what was going on when my B12 loading injections were started, and I was told they were "probably for life" - and not much else.
I wish you luck- let us know how it goes .. might be an idea to take someone supportive with you.
Yes, I'm off the PPIs - even though at an endoscopy in December the consultant stressed I should take them. I think the idea was they'd give my stomach lining a chance to heal but I'd rather try other things as PPIs are not great long term and I already have absorption issues. I tried Ranitidine for a while but left off those too. Neither seemed to be having much of an effect to be honest.
I printed off a lot of information for the GP I've been seeing for this particular problem. It was via links from this site, and covered testing and the lack of reliability. Whether she's actually read it - who knows? A few days after handing in the envelope at the surgery I was called in for more blood tests: Lyme disease, something to do with my immunity (?) and another the nurse seemed quite cagey about discussing, so probably something sinister.
I get the results on Friday but in the meantime and doing the Thyroid Multivit test from Medichecks. It's pretty comprehensive and will let me keep an eye on my thyroid levels and active B12.
It would be great to take someone along. Unfortunately we moved up north just the two of us with our son, so my partner will be in work that morning. I have a few friends here but not real established friendships just yet. So I'll no doubt be going it alone again.
At least you were recognised as needing B12 injections and are getting some treatment - although the IBS thing seems to be a common go-to for medical professionals. I've also had the same diagnosis on several occasions, along with chronic fatigue. Once I've had both sets of results, from the GP and Medichecks, and my appointment with the gastro on Saturday (I don't hold out much hope there) I'll probably order my own B12 and possibly NDT (thyroid) and self-treat with support from the Health Unlocked forums.
It really shouldn't be this difficult but I'm determined to feel better somehow, even though at times I feel totally defeated by it all.
Lucky for me, my GP does not think I have IBS, neither did the dietitian I was sent to a long while back, so at least I'm not stuck with that as my "diagnosis".
Also, happily (??) no-one has managed to find any sensible alternative to her original confirmed diagnosis of functional B12 deficiency, one that covers all symptoms not just one of them, and so unless or until that happens, I will continue to treat myself for this condition- which means frequent injections as far as I can tell from scant research. It's working -very, very slowly but there's progress.
You are right, it should not be this difficult, and determination will help see you through to a time when your life feels like living again ! Should there come a time when you can't get the help you need, don't understand your results or anything else that gets in your way, let the people here know. I would not have been able to get through this without the people who contribute to this forum supporting, advising and lifting my spirits with corny jokes and cartoons *, and a lot of kindness.
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