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What do I need to do about results please.

I feel like I am falling apart and I am a 29 year old female.

Symptoms are tiredness, difficulty with sleep, dry eyes, hair loss, anxiety, feeling cold, pins and needles, weight loss but most recently easy weight gain, breathlessness, heavy periods. Taking 800iu D3. Any advice would be appreciated.

May-2017

Ferritin - 21 (30 - 400)

Folate - 2.3 (2.5 - 19.5)

Vitamin B12 - 134 (180 - 900)

9 Replies

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  • Dear 808j

    So sorry that you are feeling so badly. I see you have had labs done; What has your Dr. Diagnosed you with? I would strongly strongly suggest you be checked for Hashimoto's. I know. I know when you feel so bad it is hard to see light at the end of the tunnel but hang in there. You can feel better. It takes digging and time but there is certainly hope.

  • TSH - 4.8 (0.27 - 4.20)

    Free T4 - 12.9 (12 - 22)

    Free T3 - 3.1 (3.1 - 6.8)

    Thyroid peroxidase antibodies - 375 (<34)

    Thyroglobulin antibodies - 236.5 (<115)

    doctor just diagnosed me with anaemia and hypothyroidism and sjogren's

  • You have the symptoms of B12/folate deficiency. You have low serum levels of B12, folate and iron. You need to see a doctor and get treated.

    You should be on a course of B12 injections. According to the British National Formulary (BNF - your doc will have a copy) the treatment for those with neurological symptoms (anxiety, pins and needles) is:

    Injections every other day until there is no further improvement in symptoms, followed by one injection every 8 weeks.

    You should also be on folic acid supplements. I would ask to be prescribed 5mg tablets, once per day, for a month to get levels up. Then take 400ug a day bought from a supermarket.

    You also need iron supplements. Try to get something other than iron sulfate as that is not easily absorbed.

  • Your B12 result is very low 808J, as is ferritin and folate, so it's no wonder you're feeling so poorly. I'm wondering whether your GP is treating as per the BNF (in the BCSH guidelines) for neurological symptoms - without delay.

    It could also be that you have an absorption problem and need to be referred to a gastroenterologist. Autoimmune thyroid disease symptoms often overlap so I agree with the above suggestion that your thyroid should be checked to rule out Hashimoto's (TSH, FT4 and FT3 and Thyroid Anti-bodies should all be tested).

    Here are some helpful links in case you need to show GP and it might be advisable to take someone close with you to your appointment for extra support.

    healthunlocked.com/pasoc/po...

    b12deficiency.info/what-to-...

    ncbi.nlm.nih.gov/pmc/articl...

    The findings in the above link highlighted an increased association of PA with other autoimmune diseases, such as type 1 diabetes, vitiligo and in particular, Autoimmune Thyroid Disease . Atrophic Gastritis and autoimmune thyroid disease are closely linked with ATD being present in about 40% of ABG patients[41]. "These data suggest that, in patients with autoimmune disorders, in particular ATD, a possible association with PA should be suspected and excluded."

    "The diagnosis of concomitant autoimmune thyroiditis and PA may have an important clinical implication, in particular, in those patients who require replacement therapy with thyroxine. Recently, it has been reported that patients with impaired acid secretion may present with thyroxine malabsorption that requires an increased dose of the drug[42], and in patients with PA, associated hypochlorhydria is always present, due to the loss of oxyntic mucosa[4]."

    "CONCLUSION

    "PA is an often silent and under-diagnosed autoimmune disease, because its onset and progression are very slow and patients may become used to their complaints. Nevertheless, the clinical consequences of undiagnosed PA may be serious, including gastric neoplastic lesions. Thus, gastroenterologists should increase their awareness of this disorder, whose definite histological diagnosis may be preceded by reliable noninvasive serological screening."

    .............

    Very best wishes for early and adequate treatment.

  • Thanks I have Hashimotos

  • TSH - 4.8 (0.27 - 4.20)

    Free T4 - 12.9 (12 - 22)

    Free T3 - 3.1 (3.1 - 6.8)

    Thyroid peroxidase antibodies - 375 (<34)

    Thyroglobulin antibodies - 236.5 (<115)

    taking 75mcg levothyroxine

  • Your TSH looks a bit too high but I expect TUK will advise on this - I only began to feel well when my TSH was suppressed and found Dr A Toft's little book, 'Understanding Thyroid Disorders', written in conjunction with the BMA, invaluable in persuading GP to raise my dose of Levo and not cut it!

    Here's another important link first posted by 'Diogenes' - Dr John Midgley, advisor to TUK. It again shows how Hashi's progresses to PA/B12 deficiency through damage to the gut (often silent), hence malabsorption of B12 as well as other essential nutrients:

    journal.frontiersin.org/art...

    Sorry, 808j, an awful lot of complicated research to read when you're not feeling well but you'll get the gist, I know.

  • PS. You may already know to make sure you take K2 with your D3 to ensure D3 goes to your bones and not the arteries.

  • Hi,

    Are you in UK? I'm asking because patterns of b12 treatment vary from country to country.

    Your B12 result seems very low. Are you getting any B12 injections from your GP?

    What does GP think is the cause of your low B12?

    Do you eat plenty of b12 rich foods eg meat, fish, shellfish, dairy, eggs?

    If a dietary cause is excluded then it's more likely that there is an absorption problem.

    B12 Deficiency Symptoms

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Risk factors for B12 Deficiency and PA

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is 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.

    If you're in UK, I'd recommend reading the following.....

    1) BSH Cobalamin and Folate Guidelines

    It's possible that your GP may not have seen this UK document.

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment. IFA test can help diagnose PA (Pernicious Anaemia) but IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative (called Antibody Negative Pernicious Anaemia).

    2) BMJ B12 article

    Emphasises the need to treat people who are symptomatic for B12 deficiency in order to prevent neurological damage.

    3) BNF British National Formulary Chapter 9 Section 1.2

    bnf.nice.org.uk/drug/hydrox...

    cks.nice.org.uk/anaemia-b12...

    4) B12 blogs

    Martyn Hooper's blog about PA and B12 issues

    martynhooper.com/

    There is also an interesting blog about B12 issues on the "B12 Deficiency Info" website

    5) Link about writing letters to GP about B12 Deficiency

    b12deficiency.info/b12-writ...

    Untreated or undertreated B12 deficiency may lead to permanent neurological damage.

    6) PAS (Pernicious Anaemia Society)

    If you think PA is a possibility, it may be worth you joining PAS.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Full Blood Count (FBC)

    Have you had a full blood count ?

    FBC results can sometimes give clues as to whether someone has low iron or low B12 or low folate.

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    patient.info/doctor/folate-...

    Other b12 blood tests

    If you've not had any B12 treatment yet, may be worth asking GP if your MMA, Homocysteine and Active B12 can be tested.

    b12deficiency.info/b12-test...

    I am not medically trained just someone who has struggled to get a diagnosis.

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