B12, Ferritin, Vit D won't go up

B12, Ferritin, Vit D won't go up

Hello everyone, I'm new here but wondered if anyone can help me. I have a million symptoms of an underactive thyroid but my thyroid tests say I'm fine. I've been B12 and Ferritin deficient for a very long time and despite iron tablets and b12 shots (every 3 months) nothing much changes. My vitamins D is low also. I asked for the b12 more often and was told no. What can I do? How do I convince my doctor to just try it more often for a while to see if it helps....I'm feeling quite lost right now. Any advice would be gratefully appreciated.

14 Replies

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  • Hi Czecholada

    Your B12 is very low still for someone who has been receiving three monthly injections. Very few GPs understand the symptoms of PA/ B12 and have not read latest research or BCSH and UKNEQAS guidelines, only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate. Devastating neurological symptoms can appear before this stage and should be treated without delay, so it is vital to read as much as you can to be able to fight your corner.

    Many researchers believe leaky gut and intestinal disease is the ground zero of autoimmune disease. Thyroid autoimmune disease and PA/B12 def. are often linked both ways and symptoms overlap.

    If your symptoms are neurological, you should be treated according to the BNF and UKNEQAS guidelines below until no further improvement, as there is a short window of opportunity before they become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to increase your injections:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    ukneqas-haematinics.org.uk/... :

    b12deficiency.info/b12-writ... (A list of symptoms, templates for writing to GP and an excellent film)

    cmim.org/pdf2014/funcion.ph... :

    The above latest UK research document is supported by many research papers and has a useful summary if GP won't read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    Many people here self inject successfully as tests are unreliable - what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', by Sally Pacholok and Dr J.J. Stuart - a book I would thoroughly recommend.

  • So your thyroid results are - normal ! Well normal is an opinion and not a result. Your Doc means they are in range - or as in the case of the FT3 - NOT. What time did you have the tests ? - and were you fasting prior to the tests. The TSH is at its highest early in the morning.

    Your FT3 is below the range - T3 is the active thyroid hormone and needed in every cell of the body. Your FT4 is also low and needs to be in the upper quadrant of the range. GP's look at the TSH and if it is low in range then assume your thyroid is not struggling. There is also a condition called central hypothyroidism - as opposed to Primary Hypothyroidism. With the former there can be problems with the Pituitary gland that actually secretes TSH. Lots of information on the net about Central Hypothyroidism. I think if you were to post these results on Thyroid UK - that people would reply similarly to me....

    Your Ferritin is VERY Low - and needs to be halfway in the range for the T4 to convert into the ACTIVE T3. Your low VitD also needs treating - round 4000 IU's daily. See the link below - different measurements. So divide your result by 2.5 - which I make 22....

    grassrootshealth.net

    You may wish to consider self injecting the B12. When supplementing iron it is important to take it 2 hours away from calcium and to take it with VitC to aid absorption.

    Low B12 and Hypo symptoms do overlap....chicken or egg ?

  • Thank you. I hadn't fasted and my test was at 5.10pm. Does that make a difference. I had noticed the T3 was below range but thought maybe I was getting confused. (I'm so confused about all this right now)

  • Yes it does as the TSH goes down during the day I have read. At its highest in the morning - important if you are wanting a diagnosis.

    What is it you are confused about ? T3 is the ACTIVE thyroid hormone and is needed in every cell of your body. As Clutter has mentioned when T3 is low then you will have Hypo symptoms. Take it slowly and keep asking questions. Maybe read through this thread again and make some notes.

  • Oh I meant about the whole thing. The way I have so many classic symptoms of overactive thyroid and yet apparently, according to gps, it's all down to my mental health. My mental health is suffering because I feel like crap, I don't feel like that because I have mental health issues but they just don't listen.

  • Your mental health is suffering possibly due to your Low T3 as well as the low B12. In the past T3 was given to people with low mood/depression. Your Doc needs to be aware of your FT3 being BELOW the range. You also need better treatment of your B12D....

  • Thank you so much. I've an appointment this Wednesday so I will kick some butts. I have my notes and if they refuse, I will send them to you guys 😉

  • I've just had a look over and isn't 3.8 higher than 3.10? Which would mean I'm not out of range?

  • The range is 3.10 - 6.80. Therefore your result of 3.8 is BELOW the range - so LOW.... :-)

  • Yes 3.80 is higher than 3.10. It is very confusing that they have written the range to 2 decimal places and the result to only one.

  • For what it's worth, my serum b12 was 450. My doctor congratulated me. In Japan he would have told me I needed a supplement. My mother's was 220. She has dementia. I had symptoms of fatigue, loss of balance, leg weakness and word-finding problems, like my mother well before she demented suddenly overnight. So I took B12 anyhow and it has made a big difference.

  • I live in usa havvr sso much wrong too long to list. anemia chronic heart falure stage 3 kidney disease. cant get b12 help

  • Just to add what everyone else has said. b12 way too low, you need your injections more often. I am a Practice Nurse and speak up for my patients, basically as I now have PA (which my GP is reluctant to accept, even though my B12 is dropping like a stone) and my ferritin is looking pretty dire as it it 10!

    I am a advocate for my patients and give them their B12 whenever they feel they need it. I will now be doing this for myself and will be injecting every other day until my symptoms improve as far as they can (as per the BNF guidelines, do this for up to 3 months and if no improvement then probably not B12 deficient).

    It is my understanding that all the autoimmune problems can go together so if you have one you may get another.

    Have your injection as much as you feel you need it. It is non toxic and very safe and does no harm, some ppl inject daily.

    Good luck.

  • When I suggested I have them more often I was told I didn't need them. Fighting all the time is so frustrating x

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