For over a decade I have been suffering from severe fatigue and was told I had hypothyroidism and prescribed levothyroxine. I have been gaining weight too over the years. Sometimes I find it difficult to walk from kitchen to living room as that can trigger an extreme fatigue and also the symptoms are intensified during my monthly cycle. Waking up and getting out of bed can be difficult
Levothyroxine has not worked and I stopped taking it about a year ago.
I had my blood tests done via blue horizons hoping to try to find an answer, below are the results. Do you think I could have a B12 deficiency and /or PA
I spoke to the GP this morning who said he will repeat the tests and I am booked to go next week. If the B12 results come back showing concerns then he will send me for further tests.
I wanted to get the opinions of this group to try to understand what could be cause my symptoms.
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Pixelchic
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You have very low B12 and folate , which is reflected in your extreme fatigue . Both deficiencies need to be addressed . If you are not vegan , strict vegetarian , are not infested with fish tapeworm , have not taken PPIs or metformin for years , do not abuse nitrous oxide , have not had bariatric surgery , don’t have Chrones , colitis or Coeliac disease you very likely have P.A. It is not easily diagnosed , because the only test for it it 50 % inconclusive . If you test positive for Intrinsic Factor Antibodies you have Pernicious Anaemia , if you test negative it does NOT mean that you don’t have P.A. About 50% of P.A. patients test negative to the IFAB . test .,Also , it looks like you do have a thyroid problem Both are autoimmune conditions ,which seldom come alone . P.A. and immune thyroid problems are often companions .
Just to warn you — the medical profession is very ignorant about P.A. . That’s why this society and forum is a life-line for us . Best of luck with your doctor.
My GP was saying he thought the B12 levels were fine but I was insistent on them being tested further. I am not a vegan or vegetarian and have been tested for coeliac and this was fine. The only medication I was on was levothyroxine, which he thought it was ok and stopped the repeat prescription. I do have some gut problems where I have burning pain in the upper left hand side of the body which can be brought on eating and sometimes not eating food along with (rather embarrassingly) a lot of build up of gas and I get a distended stomach. Other times it happens randomly. I have had colonoscopies but nothing has come up in those either.
I cannot begin to explain how glad I am to have discovered this forum, I have been suffering alone and was actually made to feel as if it was all in my head.
Your test shows that your B12 is LOW — on the borderline and coupled with a your symptoms , it strongly indicates deficiency. Your level is definitely not “fine”! Also your gut problems could be related to P.A. Pernicious Anaemia , an autoimmune condition , is caused when antibodies attack and destroy the parietal cells in the stomach . This annihilates the Intrinsic factor and the stomach acid that is produced there . Both of these substances are required for absorption of B12 . Lack of stomach acid upsets the stomach flora ,and bad bacteria take over causing stomach pain , bloating and burping . I had this myself ,and also nauseous reflux . I found that a probiotic called Symprove helped .Also an acidic drink with meals . This has now gone since I get the correct B12 treatment ( I have to self -inject because my GP will not allow more than once every 3months -insufficient for me . ) Pernicious Anaemia patients have low or no stomach acid ( Hypochlorhydria/ Achlorhydria. You can do a home test to see if you have low acid ( using bi-carbonate of soda —( Google to find out how)
additionally - the serum B12 test is only accurate to 20% which means that your results could actually be below range - You may want to recommend that your GP takes a look at the BCSH (British Council for Standards in Haematology) guidelines on cobolamin and folate disorders which can be found hereonlinelibrary.wiley.com/doi...
Particularly the sections that discuss the limitations of the various diagnositic tests and the importance of clinical symptoms in evaluating B12 status.
The normal range for B12 is a statistical average but different people tend to sit in different parts of the range - and an absorption problem is best noted from falling serum B12 levels over time rather than single point tests.
Folate has been identified as low- and is outside "normal" range. Ferritin, although in range, is also low, as Nackapan pointed out above. B12 looks low to me, too- certainly low enough not to wait for it to drop any further. The thyroid results would need advice from Thyroid UK forum.
When my hair was falling out and gums bleeding, GP decided these were not B12 deficiency issues, but were due to low ferritin or possibly low folate. You can be symptomatic if your ferritin is below 60 ug/L. My folate at worst was 5.5 ug/L, and ferritin was 36 ug/L so I was given 3 months of tablets for both. My B12 was 196 ng/L (can be measured in either ng/L or pmol/L) which luckily was 1 ng/L below range so given injections ! Since B12, folate, ferritin were all treated together, I now have no idea which improved hair loss and bleeding gums. Vitamin D can also be a problem - I was found to have osteoporosis of the spine so I get that on prescription.
A lot of people here have B12 deficiency, with low folate, ferritin and vitamin D. Useful, if this is the case, to have thyroid checked as well. So you have had all the right tests done already.
Start by addressing low B12 before folate.
All of this can take time. My ferritin and folate took a couple of years and quite a bit of supplementing to get to optimum levels and stay there. Some people feel a difference with B12 deficiency symptoms improving almost immediately once treatment starts, while for others it takes a while, during which time symptoms can get worse before better.
Once treatment starts, levels of folate and ferritin need regular monitoring because, unlike B12, ferritin and folate at high levels can cause problems.
Your GP should try to ensure that you do not have pernicious anaemia (due to low B12). He has to test the 'intrinsic factor' to confirm P.A.
I think that quite a number of people who're diagnosed as being hypothyroid can gain weight as they are often not prescribed a sufficient dose of levothyroxine to bring their TSH to 1 or lower as many doctors seem to think that when the TSH is 'within range' they do not need ti increase dose to bring TSH down to around 1.
Just quick reminder, as you have blood tests in a week don't supplement with B12 or Folate until that is done. Otherwise your results will not be true.
The B12 will show in your blood but that does not necessarily mean that your body is using it. Further test will be required for that.
Once the doctor confirms B12 deficiency or PA do not hesitate to take whatever they prescribe (and more if you feel that you need it; you can't overdose on B12)
Pixel chic... My situation is similar to yours.. I dont have all the answers... But I would read up on reverse t3.. The fact yours is high I think could mean you have conversion problems and may need t3. But I know that my doctors refuse to test Rt3 and only tested t3 once.. Definitely go to the thyroid forum and ask for help there... Thyroid problems usually come with low b12, and low vit d... Low ferritin.. I think you need to get your doctor to do a full blood picture.. To see what your blood cells are like.. As lack of b12 can cause them to be big.. Megoblastic.. Also you could have low red blood cells... Both of which can make everything not function well.. Causing fatigue and breathlessness. I have the stomach issues too.. I am trying a gluten free diet and have stopped coffee which has helped a bit.
Sorry.. Probably not much help.. But I wanted to reach out to you, to let you know I'm on the same path.. If I find the solution I will let you know.. Ps.. After 10 years of low b12 I finally got Dr to agree to b12 injections.. I've had 4 so far. And haven't noticed a difference yet.. But I'm so excited at the thought of having energy again..
Hey, thanks for the message really appreciate it hopefully I might get somewhere next week when I go again for blood tests. My stomach issues are just so random I can’t pinpoint the cause or triggers. The bloating, pains cramps and wind are just too much to bear sometimes.
My sister has similar problems with IBS and gastric issues( couldn’t eat after 4-5 pm as pain in night). Nothing sinister showing on all her tests, No deficiency in blood results. She moved house recently and had a change of doctor who prescribed a low dose of Amytriptiline. She has got such a lot of relief and is amazed by the change of her symptoms.. Apparently it’s a new form of treatment.
Hello - I am just learning about all this myself. I was diagnosed with low b12 a few years ago. I now get injections and inject myself too. This has been a slow learning process for me. I have had M.È for 15 years and only had b12 tested in the last few. I am sure many of the symptoms overlap. Anyway, what I wanted to say was that I used to suffer horrendous stomach pain after eating. For many years! I always just thought this was ‘me’ or stress related. Since sorting out my B12 they have improved massively! I rarely get them anymore - so there is lots of hope for you too. Good luck with it all. I have not found my Doctor to be much help. I paid for tests privately and brought them in to him. He agreed upon injections but would not increase them past every eight weeks. I now inject every two weeks and have noticed improvement.
Have you ever eaten raw fish eg sushi/smoked salmon etc?
Have you ever lived or stayed in an area where internal parasites are common?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results.
Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological issues. See BSH and NICE CKS links for more info.
Local Guidelines
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links. Some of these local guidelines have been posted on the forum so worth searching forum posts for "local guidelines".
Try an internet search or you could submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy.
Sadly some GPs and specialists are not as well informed about B12 deficiency as they should be, so make sure you are...
I've written some very detailed replies in the threads below which may have B12 info you will find useful eg causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
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