Please help?

Please help?

Hi everyone,

My GP and I initially thought I had a thyroid problem but my results look ok. Last week I had some more tests and I wondered if you’d look them over for me please?

I’m so, so tired, my mind is foggy, I keep going dizzy, I’ve put on weight, this list goes on.

I can see my b12 looks on the low side, but it’s still ‘normal’, so I don’t know if I’m missing something?

Many thanks

Katie

36 Replies

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  • Hi HappyKatieA both your B12 and Folate are at the bottom end of the scale.

    Can I ask what your diet is like? Do you eat plenty of meat, fish, eggs, poultry and dairy produce as this is the only natural way to obtain B12 via our food?

    For Folate we need to eat leafy green vegetables, sprouts, broccoli, spinach, asparagus, peas, beans etc.

    Are you on any medications that may cause absorption problems for B12?

    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

    Can you "see yourself" in any of the above people?

    Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

    Weakness and fatigue

    Light-headedness and dizziness

    Palpitations and rapid heartbeat

    Shortness of breath

    A sore tongue that has a red, beefy appearance

    Nausea or poor appetite

    Weight loss

    Diarrhoea

    Yellowish tinge to the skin and eyes

    If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

    Numbness and tingling in the hands and feet

    Difficulty walking

    Muscle weakness

    Irritability

    Memory loss

    Dementia

    Depression

    Psychosis

    If you have any of the above neurological symptoms make a list of them and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

    google.co.uk/url?sa=t&rct=j...

    If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

    I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

    I'm not a medically trained person but I've had P.A. (a form of B12 deficiency) for over 45 years and I wish you well.

  • Hi clivealive,

    Thank you so much for taking the time to write such a comprehensive reply! 👍🏽 I actually recognise lots of the symptoms, my concern is my GP is going to tell me my b12 is within ‘normal’ , as is my folate.

    My diet is ok, it could do with more left veg, so I’ll work on that. I do have some of the neurological symptoms, I’ve been taking anti d’s for 8 years, I am irritable (I put that down to tiredness), and my memory is terrible these days.

    I like the idea of taking someone with me to the GP, not sure who though? I think my GP is a bit fed up with me as I keep going back 😉.

    Do you think my levels are low enough?

    Many thanks,

    Katie

  • B12 isn't a gold standard test. used as a single measure it will miss 25% of people who are B12 deficient and your results are low enough to mean there is a good chance you are in that 25%

    whilst macrocytosis (larger rounder red blood cells) is a common symptom of B12 deficiency it also isn't present in 25% of people presenting with B12 deficiency.

    source: BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which your GP can access through the BNF but can also be accessed here

    onlinelibrary.wiley.com/doi...

    the guidelines also emphasise the importance of treating promptly if there are neurological symptoms and the importance of following symptoms if there is a discordance between test results and symptoms.

    B12 absorption problems tend to manifest as deficiency slowly over a long time - years and even decades.

  • Thank you Gambit62, I’m new to the forum so I’m trying to understand your answer. In re;action to macrocytosis, a blood test a few weeks ago had my MCV AT 98 fL (84-98fL) - does this mean anything?

    Many thanks

  • its still in range but at the top end - which could be an indicator that you are developing macrocytosis. MCH is another indicator that would be heading to the top or above the top of the range

  • My MCH was 31.7pg (27.5-32pg) so this might be something...

  • You need to keep hammering as it's your ongoing health that is important. I entirely agree with Gambit62's comments and bid you goodnight.

    Please let us know how you get on.

  • wow, impressive reply! Can you cite a medical abstract that will be credible enough "evidence" for my dr? How long after b12 level rise to normal levels will we get our minds and bodies back up to par, does it suggest?

  • Sadly gg317 that's a question no-one can answer as there is no yardstick against which recovery times can be measured as a lot will depend on the severity and longevity of the deficiency and we are all "different".

  • even the brain fogs, although not technically deficient?

  • I heard of folate masking b12 levels, what exactly does that mean? I am trying to educate myself enough to ask my dr to test mine.

  • According to NHS Choices:

    Treating folate deficiency anaemia

    To treat folate deficiency anaemia, your GP will usually prescribe daily folic acid tablets to build up your folate levels. They may also give you dietary advice so you can increase your folate intake.

    Good sources of folate include:

    broccoli

    Brussels sprouts

    asparagus

    peas

    chickpeas

    brown rice

    Most people need to take folic acid tablets for about four months. However, if the underlying cause of your folate deficiency anaemia continues, you may have to take folic acid tablets for longer – possibly for life.

    Before you start taking folic acid, your GP will check your vitamin B12 levels to make sure they're normal. This is because folic acid treatment can sometimes improve your symptoms so much that it masks an underlying vitamin B12 deficiency.

    If a vitamin B12 deficiency isn't detected and treated, it could affect your nervous system.

    You might also like to read down through the linked item below.

    google.co.uk/url?sa=t&rct=j...

    Please remember I'm not a medically trained person, just a P.A. patient and good on you for trying to learn as much as you can to benefit your health.

  • Thank you for your replies clivealive and Gambit62, I've made an appointment to see the Dr on Monday. It's not my usual doc as he's away, so I'm hoping he'll take me seriously. I've read up quite a bit on Pernicious Anaemia and Macrocytosis, should I suggest to him I have? My MCV and MCH levels are both at the top of their levels and my B12 is almost at the lowest.

    One of the things I haven't mentioned to the doctors is my sighing, and shortness of breath. Up until the beginning of this month I thought that was because I was a smoker, but I have been cigarette free all of this month and it continues. I've now realised that through the research it is one of the signs.

    Once again, I really appreciate your support.

    Katie

  • It's extremely important to share that references to meat etc being a source are misleading and harmful.

    "Researchers found no association between plasma B12 levels and meat, poultry, and fish intake, even though these foods supply the bulk of B12 in the diet. “It’s not because people aren’t eating enough meat. The vitamin isn’t getting absorbed.” Katherine Tucker, nutritional epidemiologist, Tufts University, Boston.

    Ensure you check all your foods out at NutritionFacts.org, non-profit charity without corporate sponsorship, which shares the over-balance of nutritional science with easy to follow posts.

  • my levels were 215 and I felt just like you have described. I was given b12 injection and my levels are now up but still feel it...perhaps worse!

  • Oh no, really gg317? From what I've been reading, you need a series of B12 injections, is that what you had?

  • monthly for 6 months. I still feel awful. I thought that once the level rose so would my mind and body. I gained tons of weight and could not lose it no matter what I did. My vit D was down too

  • Have you thought about going down the self-injecting route? I've been reading up on it. It's something I haven't ruled out if the doc's don't take me seriously, I just can't feel like this anymore, it's not fair on my children or husband.

    Did you put on weight before the injections? I have put on so much, I'm sure it's because all I want to do is sleep, and if I go for a walk or exercise I end up sleeping the next two or three days.

  • i am in the states , we need rx for injections here. I should look into other ways i suppose but my levels are up now. I gained my weight before my shots.

  • if you do not absorb your nutrients it stores as fat , is what I read. I put on 15, and it would not come off even doing water only fasting. I had the attention span of a toddler, terrible brain fog. I lost the weight, but my mind is still foggy.

  • With my Thyroid UK hat on - I would suggest you also have your Thyroid anti-bodies tested to rule out Hashimotos. The tests are Anti- TPO & Tg. I had all in range Thyroid Function tests back in 2005 - but the anti-bodies were high and so treatment commenced. When you have Hashimotos it trashes you B12 - Folate - Ferritin - VitD - due to absorption issues.

    Happy to help ....

  • that is very interesting! What were your symptoms? Would it cause neuropathy and joint pain?

  • If you click onto ny name above you can read my journey in a couple of minutes. You need the tests I suggested ....

  • thx

  • Hi

    I've just had a thyroid test but came back negative despite symptoms worsening of typical Hashimotos - antibodies in Range but edging towards the far end of high range on both

    TSH in Range 😕

    Vit D critically deficient

    But b12 low

    Ferritin low

    CRP high showing inflammation or infection

    I've had breathing problems and developed asthma at 46? 7 chest infections since the end of January 😕

    I've had Vit D treatment for a year and self supplementing iron and b12 due to feeling so unwell .

    I've had to give up full time work I feel so bad.

    Fatigue / varied chronic pain/ tingling pins and needles in both legs and feet / problems regulating temperature like sweating even when skin is cold and now freezing hands and feet taking hours to warm up at night.

    Sleep issues

    Bowel problems

    Dizziness

    Brain fog

    Things like forgetting how to spell my daughters name! Embarrassing

    Concentration and memory poor

    Like forgetting way to go or to get back

    I've worked full time all my life but at the moment I'm struggling - GP seems a bit lost

    Could I have a normal thyroid test which could be fluctuating or could this be something else causing all these symptoms

    Appreciate any advice possible I'm at my end xx

  • Sadly and as so often happens - you have only had the TSH tested - which is a Pituitary hormone. You need to know how much T4 the Thyroid is producing and then a T3 result to indicate how well the T4 is converting. T4 is a storage hormone and needs to convert into T3 - the active hormone and needed in every cell of your body. When the T3 is low and there is not enough to go around the body then things begin to go wrong.

    What was the TSH result ? A healthy person would have a TSH around 2.

    If your VitD was prescribed by your GP I am suspecting it will only be 800 IU's which will NOT improve your levels. If you were VERY Low then your GP should be following the Guidelines for your Area and loading doses should be given before a good maintenance dose - around 5000 IU's. There are also NHS Guidelines.

    How much Iron are you taking ? Taken with VitC helps absorption. Your iron levels should be monitored to ensure you do not overdose.

    Low levels of Ferritin can affect the conversion of T4 into T3.

    If you join the Thyroid UK forum you can read many posts like yours with low levels of vitamins and minerals - and click onto SeasideSusie who has a wealth of knowledge to pass on ....

    thyroiduk.org

  • Just seen your post on Thyroid UK - hopefully you have some answers :-)

  • would it spark a light on a ANA test?

  • I've been back to the doctors this morning (a different GP as mine is away). He said my vitamin B12 of 216 (200-910) is absolutely normal and has decided to halve my dose of Citalopram. I'm really not sure of where to go now.

  • I wouldn't say your Thyroid results are fine - yes the TSH is low - but also the T4 that the thyroid produces is also low in the range. This is a storage hormone and needs to convert into the ACTIVE thyroid hormone T3 - the FT3 is also quite low in range. This is needed in every cell of the body for healthy metabolism. Could be why you are gaining weight. The anti-bodies need testing - TPO and Tg as mentioned in my earlier reply - this would rule out Hashimotos which is auto-immune.

    The NHS are loathe to do the correct testing so if you are able - Private Home Testing kits are available through various companies with results by e-mail. Well used on the Thyroid Forum.

    thyroiduk.org.uk/tuk/testin...

  • Thank you so much Marz, it's so kind of you to help. I have just looked at the private tests on Medichecks. Is there one in particular that you think I should go for? Whilst I'm happy to spend money on my health, we don't have oodles of it, especially before Christmas with two young sons, so I'd rather be careful. x

  • This is the page I'm looking at Marz

    medichecks.com/thyroid-health

  • medichecks.com/thyroid-func...

    There is also a test further down that includes the Ferritin - folate - vitD etc. - This is also good. If you join up for the Newsletter you will be informed of Special Offers.

    Worth knowing the full story rather than only part .... :-)

  • Thank you Marz, and yes, the full story is what's needed I think. Many thanks for your input.

  • You are welcome :-) Do hope all goes well. Maybe post your results on Thyroid UK forum here on HU for comments. Lots of very helpful folk :-)

  • I started a new post yesterday in light of my most recent results from Medicheck, with much lower B12 results. It can be found here:

    healthunlocked.com/pasoc/po...

    Thank you to everyone who is responding, I'm actually sitting in tears as I type because there is a reason I feel like this. x

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