I’m 17 years old and after going to my GP with suspected iron deficiency, my b12 levels came back as very low at 92. After pre loading doses and monthly injections since October my levels are now at 1434! Intrinsic Factor came back as normal and no further action required- Paediatrician has told my GP I no longer need injections and oral doses will be suitable- we will question this and I could do with any guidance or input to help my cause!
However my main issue (and the one I originally went to the GP about as I don’t really suffer with tiredness) is eating and a feeling of a lump in my throat, struggling to swallow and pressure around my ears/back of head. Does anyone else experience anything similar?
It coincides with me walking into a glass door whilst on holiday in August (when my symptoms began really) and I’m seeing a cranial osteopath tomorrow to check out any other damage...it all feels really overwhelming and confusing to be honest!
Any similar experiences or advice gratefully received
Thanks so much, Flora
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Thank you - I’m going to check with my GP in a couple of weeks to discuss next steps and possible paediatrics appointment or ent - so much new stuff to navigate!
I'm sorry you are feeling so rough. I was about your age, possibly a bit younger, when I started having B12 deficiency symptoms and it's hard, isn't it?
Do you eat plenty of meat, particularly beef and lamb, fish and dairy products? As I'm sure you know, these are vital sources of B12 (and many other essential nutrients), without which our bodies cannot function properly.
If you are and are still getting the problems it may mean that your body is not absorbing nutrients, particularly B12, correctly. If this is the case then you will probably need regular injections for life - sounds daunting but is OK coz you get used to it.
Yes, throat problems can be a sign of a B12 deficiency and I was one who was affected when my levels were low. My tongue felt "wooden" at the back too and even now I'm much better I can easily end up coughing if I'm drinking (or swimming!).
It is good that they are getting you checked out if it seems related to the door incident. It could be a trapped nerve in your neck area. If it is an osteopath or chiropractor might be the best way to fix it.
However be aware that it could be that you were getting symptoms of deficiency that you didn't notice that were in part responsible for your accident (balance issues, sight problems, alcohol intolerance, proprioception and ataxia - basically not quite managing to get your body to go where you were trying to get it to) and the stress of doing it "used up" the last bit of your resources and tipped you over the edge.
If you aren't vegan or veggie and so do need injections rather than tablets, please look up the excellent replies by Foggyme and Sleepybunny.
I will add links to them after this so you can go to their profiles by double clicking on their names and looking under the heading "replies".
Thank you so much for that - I will do my research as I’m not veggie or vegan, so it does feel like an absorption issue- though not sure how to get that through to GP if paediatrics are advising her I don’t need jabs, just oral b12. I understand the intrinsic factor test is unreliable too?
No alcohol involved in the door incident 😂 had just arrived in Majorca and walked straight into a very clean plate glass door - so yep, clumsy!
Thanks again for your reply - it’s reassuring to know I’m not alone x
I had this throat problem. I had put it down to taking Alendronic Acid for osteoporosis a few years previously and stopping after a year because of the terrible heartburn I was getting which I had to take antacids for. This is almost gone 1 year into injections for PA.
I also had extreme clumsiness and would bump into things and easily fall after losing my balance, my thighs and hips were black and blue.
It's awful that b12 isn't on the regular blood test.
Yes, one of my B12 deficiency symptoms was like a lump in the throat and very hard to swallow, like the throat was swollen up. At times, it was frightening as did wonder if it would constrict my breath intake as well, though it never did. Also pressure around my ears and head. These issues are now all gone.
I'm now 10 months into resolving my B12 deficiency, started out originally with getting injections but now on oral supplementation only. I don't have PA, my deficiency coming from a vegetarian (almost vegan) diet, so therefore have no B12 absorption issues and can rely on oral B12 supplements.
I can imagine how overwhelming and confusing this must be for you, this forum is wonderful for the support you need. I've come here to read posts and replies many times and really helped through some pretty rough patches.
I would refuse the tablets. As they will skew any blood test results in the future. You need injections. Don't let them measure B12 when you're having injections
I loved your stop-gap reply - though I definitely think of you as expert in this condition as you've helped me loads AND your artwork, which I refer back to from time to time, keeps me smiling!
I'm very much a layman but I like your comment about going to bed at sundown!! It was only a couple of days ago I sighed to myself that now the evenings are pulling out - just; it is still only January after all - that I am again struggling to stay awake long enough to make the most of the sunlight and it won't be long before I beat the sun to bed again!! 😁
I hope your doctors know that the IFA Intrinsic factor Antibody test is not always reliable. It is still possible to have PA (Pernicious Anaemia) even with a negative result.
Unfortunately some GPs and specialists do not seem to be aware of this.
Have you thought about joining and talking to PAS (Pernicious Anaemia Society) or asking an adult family member to join on your behalf? They could tell you more about Antibody Negative PA and suggest useful info to pass on to your doctors (especially if you're in UK).
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
There are many other possible causes of B12 deficiency besides PA eg diet, Coeliac disease, H pylori infection, Fish tapeworm infection, exposure to nitrous oxide, drugs such as metformin (a diabetes drug), Crohn's disease etc
Do you ever eat raw fish eg sushi, smoked salmon etc?
If yes, may be worth asking about possibility of a parasite infection eg fish tapeworm. One potential sign of fish tapeworm infection is a rise in eosinophils, a type of white blood cell WBC. Eosinophil result can be found with results for Full Blood Count FBC.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Be aware that the book does not show updated BNF (British National Formulary) info, see BNF links up page.
"though not sure how to get that through to GP if paediatrics are advising her I don’t need jabs, just oral b12"
My understanding is that in UK, low dose oral B12 is only recommended for dietary B12 deficiency. Has the paediatrician/GP assumed that your low b12 is due to diet?
Even if your low b12 is due to your diet, if it is severe ( 92 was very low) or neuro symptoms are present, my understanding of UK guidelines is that you should be on injections.
What strength of B12 tablet has the paediatrician suggested?
Oral B12 is cheaper and I sometimes wonder if oral B12 is prescribed for this reason....
Have you written out a typical weekly diet , food and drinks , for the GP/paediatrician so they can see that you are eating meat, fish, dairy, eggs etc.
This would hopefully show you are eating plenty of B12 rich foods and would encourage GP to consider that there might be an absorption problem in the gut.
Make sure you have a supportive adult with you when you see your GP/specialists. It can be very useful to have witness to what is said.
The link above has templates for letters that people can base their own letters to GP on.
Writing a letter to GP can be more effective than passing info on verbally. In UK, letters to GP are supposed to be filed with a patient's medical notes so harder for them to ignore a letter.
Letters could contain symptoms list (especially any neurological symptoms), test results, relevant family and personal medical history ( is there a family history of PA, Coeliac, other auto immune conditions), extracts from UK B12 documents.
I wrote a very detailed reply on another forum thread which has links to other B12 books, B12 websites, B12 blogs, UK B12 documents/articles plus other B12 info.
I suggest you ask a supportive family member to read through it with you as some of the links may have info that is upsetting. See link below.
I hope you or someone in your family considers joining PAS. Costs about £20 for a year's basic membership.
As you are under 18, it's possible that your thoughts and views on your condition may not be fully respected due to age prejudice.
I think it is likely that you will need extra support to argue your case for injections which is why I suggested that you or a family member join PAS. It can take a lot of courage to challenge a GP or specialist doctor but sometimes it is necessary.
If you want an adult family member to act on your behalf , they may need your signed written permission to do so to keep GPs happy.
Warnings
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
4) Some parts of UK are using out of date local guidelines on treatment/diagnosis of B12 deficiency. Try to track down the guidelines for your part of UK and compare them with national guidelines/articles eg BSH guidelines, BNF etc.
Sorry to bombard you with so much information. I wanted you to have all the info I wish I'd had years ago.
Yes also tested for thyroid, M2, coeliac, glandular fever - not h pylori though or the raw fish. I will check my blood results for that as we’ve been getting those each time.
"Yes also tested for thyroid, M2, coeliac, glandular fever - not h pylori though or the raw fish"
What tests did you have for Thyroid?
In UK, GPs and specialists often only test TSH but there are several other thyroid tests they can do. Just doing TSH is not enough to get a full understanding of thyroid function.
I suggest putting any thyroid results on the Thyroid UK Forum on HU.
have you got access to your test results for Coeliac?
Did your doctors do both the following tests?
1) tTG IgA which checks for antibodies to gluten
2) Total IgA which checks which patients have IgA deficiency.
Patients with IgA deficiency need alternative tests for Coeliac as their bodies cannot make the tTG IgA antibodies to gluten and their tests will come back negative even if they have Coeliac disease. IgA is an immunoglobulin.
If they only tested tTG IgA I don't see how they can be sure you do not have Coeliac.
Did your doctor tell you to eat plenty of gluten in more than one meal per day for several weeks before blood was taken for Coeliac tests?
If your GP didn't tell you this then it's possible that your result in tTG IgA test is not reliable . A person who has Coeliac disease may still get a negative result in the tTG IgA test if they weren't eating enough gluten before blood was taken.
NICE guidelines on Coeliac disease suggest that patients who have symptoms suggestive of Coeliac disease after negative results should see a gastro enterologist.
Have you been referred to a gastro enterologist if gut symptoms present?
I used to request referrals in brief, polite letter to GP along with evidence that supported request eg symptoms, test results, extracts from documents.
As your mum has joined PAS I suggest she rings PAS office soon and talks directly to PAS. She may be able to speak directly to Martyn Hooper, chair of PAS.
It's vital to get adequate treatment for any cause of B12 deficiency. Untreated or under treated B12 deficiency can lead to neurological problems.
PAS office is open most Sat mornings and some other mornings.
Have you looked to see if there is a PAS support group close to you?There are currently 15 in UK. they are good for emotional support and also for local knowledge about helpful GPs/specialists.
Wow thank you so much, there is so much to learn but that’s brilliant. Yes my Mum has joined PA and is very much fighting my corner too - it’s just a lot to understand for both of us and a lot of ignorance from Paediatrics and GP. Having said that my GP is supportive generally but did suggest dropping jabs in favour of oral b12 on advice of Paediatrics. We have another appointment in a couple of weeks to discuss.
I had the lump in my throat, pressure and issues with swallowing. And pain/pressure in the back of my head and ears. All disappeared with b12 injections. Some try to return but never as bad. I now self-inject to keep a schedule that works for me and to keep my symptoms at bay.
Maybe sleepybunny left you this link. It is my favourite. It is concise, informative and great to help educate doctors -
"Having said that my GP is supportive generally but did suggest dropping jabs in favour of oral b12 on advice of Paediatrics"
Has your mum asked Paediatrics/GP why they think oral b12 is a better option?
UK guidelines only recommend oral b12 for dietary deficiency and for severe dietary deficiency eg if neuro symptoms present then B12 jabs are recommended .
For B12 deficiency due to gut absorption problems, B12 injections are recommended.
As your mum is a PAS member, she may be able to arrange for your GP to speak to PAS. She would need to discuss this with PAS first though.
B12 deficiency can have a severe impact on mental health. Symptoms such as depression and anxiety are common. Have you and your mum considered whether " lump in the throat sensation" could be linked to anxiety?
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
I also read the following books.....
Be warned that some of the case studies are upsetting to read.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
There may be copies of these books available from your local library service.
I also plan to read
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Have you had the HPV (Gardasil) vaccine? If so please research the side effects, which are many, and TRS detox spray. The virus can remain in any part of the body and if it's in the ileum , perhaps it's affecting your B12. The Children's Health Defense has a lot of good information on the vaccine so that might be one place to start and then branch off from there to other sites to get more information. Best of luck.
Also, one more thing you can look into is VSC by Nature's Sunshine to help get rid of the virus. A friend of mine used it when she was having trouble after the vaccine. The TRS has excellent results but you may want to start off slow because people have documented die-off symptoms when starting it.
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