I am hypothyroid after all

Hello as I posted before I sadly suffered a miscarriage in April which lead too my referral at my request too see and Endo. He thought my thyroid problems were due too pregnancy and I wasn't actually hypo. Well he wanted me too drop from 100mcg too 50mg which I went against and went too 75mcg my tsh did improve further fuelling his belief I wasn't hypo so I dropped too 50mcg and six weeks later my tsh is up too 6 my Endo discharged me before I got too this stage so gp is managing my care now. I'm back up too 75mcg 3days in and menstrual cycle started early been bleeding off and on with changing meds. Found out my b12 is 173 I'm told this is low and my iron level is 5 I have no print out but I'm told all other result bar tsh b12 and iron were normal including t3 and t4.

What do I do now gp as nice as they are have little knowledge of this condition advice please?

6 Replies

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  • Nettiboo, You're well shot of that endonob. If you need referral again ask for someone from the list of member recommended endos from louise.warvill@thyroiduk.org.uk

    Hypothyroidism is usually managed in primary care, unless the woman is pregnant when referral should be made to endocrinology. The goal of Levothyroxine is to restore the patient to euthyroid status, and for most this will be when TSH is just above or below 1.0, with FT4 in the upper range. Read Treatment Options in the link below and email Louise Warvill for a copy of the Pulse article if you would like to show your GP.

    thyroiduk.org.uk/tuk/about_...

    TSH of women planning conception or newly pregnant should be in the low-normal range 0.4-2.5 with FT4 in the upper range. Levothyroxine is usually raised by 25-50mcg when pregnancy is confirmed to ensure good foetal development.

    cks.nice.org.uk/hypothyroid...

    onlinelibrary.wiley.com/doi...

    ww.thyroiduk.org.uk/tuk/about_the_thyroid/pregnancy-guidelines.html

    As B12 and iron are low ask your GP to check whether you have malabsorption preventing uptake of nutrients. Tissue Transglutamine to check for coeliac disease(gluten intolerance). Intrinsic Factor and gastric parietal cell antibody tests for pernicious anaemia. Negative results do not conclusively rule out coeliac or PA, and further tests or biopsies may be recommended probably via referral to a gastroenterologist.

    B12 deficiency can be corrected with B12 injections until deficiency symptoms resolve but PA means lifelong B12 injections will be required. If B12 is low in range, but not deficient, you will probably have to supplement yourself. Hold off supplementing until the tests above are done, or declined, and then supplement 5,000mcg methylcobalamin sublingual lozenges, spray or patches for 2-3 months to boost levels and then reduce to 1,000mcg. Take a B Complex vitamin to keep the other B vits balanced.

    If iron deficiency doesn't respond to iron tablets it may be necessary to have iron infusions.

  • hello clutter many thanks for reply and i understand the suggestion of further testing but im sick of all the tests ive had done recently i cant face more at the moment. ive brought myself a b complex of vitamins in a natural powered form supposedly more readily absorb by the body and i also got spatone iron sachets ive read liquid iron is better too absorb.

    can i ask what iron infusions are please? with regards to absorption im vegetarian so doctor thinks it that rather than anything else

    im really unwell at the moment picked up a cold from my little ones toddler group and its gone straight too my chest low iron and b12 must make me more prone too illness. thanks again

  • also forgot too add i was tested in 2013 for coeliac disease which was negative

  • Nettie, I understand the reluctance for continuous testing. Your diet will also be responsible for low B12. B12 is mainly obtained from meat and fish and vegetarian and vegans should supplement. I suggested 5,000mcg above. In 2-3 months you can probably reduce to 1,000mcg.

    There is very little iron spatone. Try Ferrous Fumarate 210mg and take each tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation. VitC is a good immune boost so when you start a cold or the kids have a cold up the dose by 2,000mg for a few days. Be sure to take iron 4 hours away from Levothyroxine.

    Intravenous (IV) iron supplementation is a method of delivering iron by infusion with a needle into a vein. (Medication that is given intravenously is called parenteral therapy.)

  • Hi,

    If you have a look on the PAS forum on HU there is a lot of info about B12 deficiency and PA.

  • You need to get a printout of your labs. The word "normal" coming from a doctor is meaningless. If you don't know your FT3 and FT4, and they won't test them, then get them tested privately. In the meantime, you could start high-quality B12 and iron supplements.

    The reality of a lot of thyroid stuff these days is, the patient has to become more knowledgeable than the doctor, and many patients have to figure out how to treat themselves.

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