so I'm a 21 year old female who is struggling for any type of diagnosis. I originally went to my gp with forgetfulness, issues with focusing, falling over, migraines etc. it came back that I am deficient in vitiamin b12. I had the loading doses and have to be on the injections they say for the rest of my life?
I was tested for pernicious anaemia as well as all other diseases which all came back clear! how can this be when I have a perfectly well balanced diet.
My folate level is also falling last month it was 4.1mg now it is only 2mg so I'm having to take more medication again.
My vitamin D level is extremely low recently and am now having to take high loading doses of that.
My iron level was 30 which is 1 over what would be classed as anaemic.
I also have struggled with random heart palpitations for the past few years where my heart rate can reach over 250 bpm.
I am currently at university and I'm struggling greatly with tiredness. I need to find out why all this is happening as I'm only 21! anyone have any ideas?
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Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
I know you say you have "a perfectly well balanced diet" but can you "see yourself" among any of the above "People"?
If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
The P.A. test for intrinsic Factor Antibodies ((IFA) test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
It's good that you are supplementing your Folate as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Some of your symptoms may be related to your Vitamin D deficiency so hopefully they may improve soon.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
Apart from your having possible absorption problems via your digestive system could you see if any of the other causes of the B12 deficiency apply to yourself?
Are you in UK? I'm asking because patterns of B12 treatment vary from country to country. Some info below may not apply if you're not in UK.
"I was tested for pernicious anaemia as well as all other diseases which all came back clear!"
What tests did you have for PA?
The Intrinsic Factor Antibody (IFA) test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. This is called Antibody Negative Pernicious Anaemia. It's possible your GP is unaware of the possibility of Antibody Negative PA.
Antibody Negative PA is mentioned in the following documents.
Have you been tested for Coeliac disease? This can lead to B12 deficiency because it can affect the gut and lead to absorption problems. In UK, two first line tests are recommended in NICE guidelines.
1) tTG IgA (tissue tranglutaminase IgA)
2) Total IgA
My experience is that the second test, total IgA is not always carried out. Total IgA test is important because people with IgA deficiency will test negative on tTG IgA test and will need alternative tests for Coeliac disease.
The symptoms of thyroid disease can overlap with those of B12 deficiency. In UK, doctors sometimes only order TSH test which will not give a full picture of thyroid function.
Marz who posts on this forum knows about thyroid problems so it may be worth searching for her posts.
May be worth posting any thyroid results on Thyroid UK forum on HU.
Family History
Do you have any blood relatives with B12 deficiency, PA or other auto -immune conditions? Auto-immune conditions in the family increase the chances of developing one. Is GP aware of any relevant family history?
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.
"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 book about B12 deficiency with lots of case studies.
"I had the loading doses and have to be on the injections they say for the rest of my life"
How many loading doses did you have? How often will you have jabs after loading doses are finished?
Details of UK b12 treatment
For people with b12 deficiency without neurological symptoms
6 B12 loading jabs over 2 weeks then a jab every 3 months
For people with B12 deficiency where there are neurological symptoms
A b12 loading jab every other day for as long as symptoms continue to get better (this could mean weeks even months of loading jabs) then a jab every 2 months.
UK b12 treatment info can be found in
1) BSH Cobalamin and Folate Guidelines, a quarter through guidelines (link above)
2) BNF British National Formulary Chapter 9 Section 1.2
UK GPs will probably have a copy of BNF on their desks. It's possible to get own copy of BNF from a good bookshop or internet retailer.
Is your GP aware of any neuro symptoms you have? There seem to be quite a few UK forum members with neuro symptoms on this forum who struggle to get correct level of treatment.
Lots more B12 info in pinned posts on forum. There is a useful summary of mainly UK b12 documents in third pinned post on forum.
PAS (Pernicious Anaemia Society)
If you think PA or Antibody Negative PA is a possibility it may be worth joining and talking to PAS. They can offer support and info about PA. PAS is based in Wales, UK but has members from around the world.
UK charity that offers free second opinions on medical diagnoses and medical treatment.
The most important thing I learned....
was to always get copies of all my blood tests. I learnt to do this after I was told everything was normal and then found abnormal and borderline results on the copies. In relation to B12, i look particularly at B12, folate, ferritin and full blood count (FBC..also known as Complete Blood Count in US)
I am in the UK and have been tested for all the known auto immune diseases which I believe is all. All came back negative. I had neurological symptoms and had the loading dose every other day. They keep telling my that it’s just a thing I may have and never know the answer to! Thank you for your advice!
PA and some other auto-immune diseases eg lupus and rheumatoid arthritis can have forms where antibodies are not produced or not detected therefore test may come back with a negative result.
The flowchart from BSH Cobalamina nd Folate Guidelines (link in post above) makes it clear when Antibody Negative PA can be diagnosed in UK.
My understanding is that if other causes for B12 deficiency have been excluded and IFA test is negative or normal range and person responds to B12 eg symptoms improve then Antibody Negative PA should be diagnosed.
If you contact PAS (tel no in post above) they hopefully can tell you more about Antibody Negative PA.
"have been tested for all the known auto immune diseases which I believe is all"
I'd suggest getting copies of all blood tests so you can see what tests have been done.
If you search for sero-negative (plus name of auto-immune disease) on internet, you should find info about forms of auto-immune conditions where antibodies are not produced.
Have you ever been checked for Hughes Syndrome (also known as Antiphospholipid syndrome)?
No I have not be tested for those! It just feels wrong to say I’ll have these injections forever if I don’t know the cause. I’m going to look into it now. Thank you!!
Having Hashimotos - auto-immune thyroiditis - can trash all your vitamins and minerals due to mal-absorption/gut issues. If your thyroid was tested do you have the results with ranges ?
These are the required tests - TSH - FT4 - FT3 and TPO and Tg
The above link takes you to companies that do Private Testing by post with finger prick testing as a few of the important tests I have detailed above are very rarely done in the NHS - a scandal. Also posted by Sleepybunny .....
It costs maximum of £50 to get a full set of medical records from GP.
Maximum of £10 to get copies of all your blood tests.
It's free to just view them and I guess there is nothing to stop you making notes from screen. If you want copies (my personal preference is for copies as it's formal proof of your results) you may need to hand in a formal signed letter asking for them and it could take a week or so forthem to be ready, GP has to sign off the request.
Some GP surgeries have online access to a summary of results/records but this is just a summary and may not have all the info/detail needed.
Only reason for GP practice refusing is if they feel to give you your test results/records could cause harm to you.
Getting records and test results from hospitals is more difficult, can involve form filling and a visit to hospital records office.
Most doctors will treat your symptoms but not the cause of your autoimmune condition and this appears to be the root of many problems, with the added complication that various medications can deplete B12 further.
Researchers now believe leaky gut/intestinal disease/gastric atrophy is the source of autoimmune disease, and it is believed this eventually leads to low hydrochloric acid. We need this acid to begin the process of absorbing B12, as well as other essential vitamins and minerals, and I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/PA/B12 problems.
Dr Marc Ryan's excellent article on his Hashimoto's Facebook page was a lightbulb moment for me in the search for answers to the cause of autoimmune disease and B12 in particular:
"Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"
"Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.
Many researchers believe that this is ground zero for autoimmune disease.
It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.
The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.
This is the place where absorption happens.
And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)
One of the reasons for this is the breakdown of these brush borders.
Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.
The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."
..............
Personally, I find that taking daily spoonfuls of sauerkraut (more good bacteria than any other probiotic I'd tried) and avoiding gluten is, hopefully, helping to heal these microvilli lining my digestive system, enabling better absorption, thereby strengthening immune system.
This did work for quite a while but, being over 60 years old (when unfortunately hydrochloric acid may start to reduce) as well as having had H. Pylori and gastric problems for years, I found myself having to begin self injecting to heal the neurological problems of fatigue, memory, pins and needles etc.
I'm so sorry this has happened to you at such an early age and at such a crucial point in your life but, with early and adequate treatment with injections (see Dutch research results), you will be able to come back from this.
Keep researching - very best wishes for a good result.
Hi Polaris, can you tell me is the Hashimoto test offered by GP. I had my thyroid tested a few weeks ago and as similar to previous my GP is not prepared to treat. A new GP has started in surgery so I have an app next week. The coldness and burning in my feet are getting worse and and as I am injecting 2 b12 weekly I am wondering if thyroid could be contributing to some of my symptoms. Not sure how to approach this with GP. Thank you. Best wishes.
A difficult one to answer Potter5 without knowing what your thyroid test results are. Marz and TUK forum would give good advice on this.
I was on various heart drugs before I read up that untreated Thyroid disease can cause leaky valves (one from birth and another found later). I asked to be tested and started treatment with levothyroxine but it was always a battle to be treated optimally. I was finally able to convince new GP (previous doctor retired) by showing her this extract from, 'Understanding Thyroid Disorders', by Dr A. Toft, - published in association with the BMA :
"Judging the correct dose of thyroxine:
In some patients, a sense of well being is achieved only when ft4 is raised, for example 30 pmol/l, or 70 nmol/l, and TSH low or undetectable. In this circumstance, it is essential that the t3 level in the blood is unequivocally normal in order to avoid hyperthyroidism. "
"Thyroid blood tests should not be interpreted in isolation and correct medical care will also depend on careful assessment of symptoms and clinical assessment".
.........
Not sure whether this research link might also help convince GP? It highlights the connection between autoimmune thyroid disease and PA/B12 def. and was originally posted by 'Diogenes', Dr John Midgley, scientist and advisor to TUK.
Thank you so much Polaris for this information. I will print them out and take to app. The journal.frontiersin doc is over my head so will have to try and understand some more. My thyroid tests a few weeks ago were Free T4 - 14.4 pmol/L range (10.6 23.2)
TSH level 3.67 mU/L range (0.3 - 4.2)
What do you make of these levels.
These are similar to tests some months ago and GP said absolutely not needed to be treated. I think when levels are close to top or bottom of range maybe struggling a bit but I don't know if this is sufficient to treat. I just want to be reasonably prepared for "double appointment" with new locum. Thank you again and appreciate any comments or advice. I hope you are continuing to improve. Best wishes.
Hi Marz, thank you. You advised me some months ago to have thyroid retested. My GP will only do free T4 and TSH. Retested a few weeks ago.
My free T4 14.4 pmol/L (range 10.6- - 23.2)
TSH 3.67 mU/L range (0.3mU/L - 4.2).
These are similar to previous tests. App next week with new locum who may have a different view. I don't know with these readings, should I be treated, appreciate your thoughts. Some good information from Polaris to take to app. also. If no joy I will get further thyroid tests done privately as suggested. I am just trying everything I can to get better. Thank you again for your reply. Best wishes.
TSH in healthy people is around 2.5. Your thyroid is beginning to struggle as indicated by your low in range FT4 - a storage hormone that does very little in the body. T4 needs to convert into the ACTIVE hormone T3 which is needed in every cell of your body - brain cells have the biggest demand followed by the gut/immune system. So with a low in range T4 - it mostly follows the T3 will be low and not enough to go around ....
Hashimotos is the MOST common thyroid disorder in the world so if the antibodies are not tested how would the GP know. Politely insist. See above ....
The above link explains everything you need to know and features on NHS Choices website as the website to go to for thyroid info. ( just in case the Doc says you should not read stuff on the internet !! )
Thank you Marz. I will copy this out also and take along. I just think some of my symptoms could be due to thyroid, not the banding and cotton wool feet, of course, don't know how to deal with those. My feet and legs feel like thy have been stored in freezer, I know b12 deficiency effects body temperature so it is difficult to know the cause but at least if I got thyroid treatment I could find out. Hope you are keeping well and thank you again. Best wishes
You are right - so many overlapping symptoms. The thyroid is our thermostat 😊 Check out Broda Barnes on-line and his diagnosis/treatment based on the body temps.
Thank you again Marz and I will certainly look this up. The locum is going to love me next week. Isn't it sad when you feel so ill and helpless that you go to GP appointment expecting a battle. Best wishes Marz.
Hi Marz, just been reading Broda Barnes. I had no idea about taking your temperature to give indication of thyroid problems. I will be getting a thermometer in next few days. Thanks again.
Before the 70's Doctors were trained to look at clinical signs not the computer screen ! Low temperature often indicates low metabolism which can also be low thyroid 😊
Dr Barry Durrant-Peatfield trained at the Broda Barnes Institute after leaving the NHS where he was unable to treat thyroid patients correctly due to guidelines. A great Doc who helped me on my journey.
Hi. I am b12 def, folate def, vitamin d def and iron def. The doctor will also nor accept that i have an absorption problem, they think it is my diet even thougn i eat meat, diary etc. I have had all tests for lupus, PA, ceoliac etc had brain scans had ultra scans etc etc just because all tests come back negative doesnt mean you dont have it. My mum has chrons and PA. My brother has ceoliac and b12 def. I believe i have an absorption problem, much to my GPs dismay...p.s i am 26 and have been feeling rough for years.
It's very possible you have another auto immune disease. Unfortunately when you have one there tends to be more. I'm thinking Hashimotos and or maybe something w the gut. Wondering if you have had a complete thyroid panel done that includes thyroid antibodies?? If you have and they are negative . The next thing I would recommend is an elimination diet. It's hard but worth it. Give up all gluten, dairy, sugar and chemicals like artificial sweeteners preservatives etc. shoot for a clean diet. A healing diet. Read about bone broth and it's healing effects on the gut. Try for all organic when possible. Sounds difficult I know. But I share many of your symptoms plus more. I have the pernicious anemia, low D , iron etc. I also have the same ssx. After much digging I found I have Hashimotos. Many docs don't run full thyroid panel. They skip the antibody part. I asked for it. Walaa. There it was. I also see a Functional Medicine Dr. Big difference for me. She guides me wholistically on nutrition supplements and Rx. I will tell you tho. The hard work was on me. It's no quick pill fix. This problem is managed solely w diet and supplements. When I went on the elimination diet I felt better immed. When I slip and have gluten or dairy or even excessive sugar , I can feel it. I get joint pain, mental fog , muscle aches and much more. It sucks !! But that's the way it is. Now idk if this is you or not but just thought I'd share my story w you since yours sounds so much like mine. Good luck to you. Oh one more thing. Read all you can. Learn on your own.
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B12 loading doses feel terrible
Should I have been tested for PA before starting loading doses?
B12 low end of normal range but symptoms. Dr says not deficient as no anaemia/macrocytosis
Being passed from pillar to post - any ideas for expediting diagnosis and treatment?
