Help for my sister

I am new and trying to get help for my sister. She was diagnosed hypothyroid 2013 and only ever felt right on the addition of T3 to her levo.

She feels that she has given up on life and has felt like this ever since T3 was removed due to cost issues, so much so that she is contemplating stopping her levo because she doesn't want it making her feel ill and lowering her free T3 level. It appears to rise when she stops her levo which makes her think she is on the wrong medication.

If anyone could advise I would be grateful.

Oct 2017 - 125mcg Levo

TSH 5.9 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

TPO antibody 141 (<34)

TG antibody 279.5 (<115)

13 Replies

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  • This should help and also shows the hard word ITT campaign and our admins are doing behind the scenes 💖

    healthunlocked.com/thyroidu...

    british-thyroid-association...

    british-thyroid-association...

  • Yikes her TSH is way too high she needs T3 or simply get NDT that will probably restore her health

    The worst thing she can do is stop all meds

  • She is very under-medicated, that's why her FT3 is low. Levo can't lower her FT3, that's not how it works. And, she's not showing signs of a conversion problem, she just needs more levo.

    How does she take her levo? On an empty stomach, one hour before eating or drinking anything but water, etc.? She's not on a high dose, but her TSH shouldn't be that high on 125 mcg.

  • Thanks. When she took 175mcg levo her free T4 was at the top and her free T3 at the bottom which she thought meant conversion problem? She takes levo on an empty stomach a few hours before and after food and drink

  • Yes, the problem with having the T4 at the top of the range is that more of it is converted to rT3. Which isn't a conversion problem as such, that's just the way it works. But, there she is frankly under-medicated. And, don't forget she has Hashi's, so her dose is not going to stay static forever, It's going to have to keep up with the damage done to her thyroid.

    Is she gluten-free? Does she take selenium?

  • Thanks she is gluten free as of today but not taking selenium.

  • Well, it will take a while for the gluten-free to start helping, but it should lower antibodies and make her feel better.

    Selenium will also lower antibodies, and help with conversion.

    I'm not saying she shouldn't take T3, though. But, given the difficulties in obtaining it, it would be easer for her if she can manage without it. And, the first step to finding that out, is to get an increase in levo.

  • So she shouldn't have had her T3 stopped

    Can you go with her to see GP. Ask for T3 to be reinstated

    Print this out to take along with you

    british-thyroid-association...

    Plus this - highlight pages 3 and 5-8

    patients-association.org.uk...

    Meanwhile, because she's had T3 stopped she is VERY under medicated

    She needs immediate dose increase of Levo by 25mcg and retest after 6 weeks

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH

    Highly likely to have very low vitamin D, folate, ferritin and B12. Ask GP to test urgently.

    If these are too low then thyroid hormones can not work. Does she take any supplements?

    Hashimoto's causes leaky gut, this very often causes issues with gluten

    According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

    But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

    Changing to a strictly gluten free diet may help reduce symptoms.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/the-gluten...

    scdlifestyle.com/2014/08/th...

    drknews.com/changing-your-d...

    Low stomach acid can be an issue

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    thyroidpharmacist.com/artic...

    drmyhill.co.uk/wiki/hypochl...

    scdlifestyle.com/2012/03/3-...

    Other things to help heal gut lining

    Bone broth

    thyroidpharmacist.com/artic...

    Probiotics

    carolinasthyroidinstitute.c...

    If GP difficult about increasing dose of Levo

    Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

    Also ask for list of recommended thyroid specialists. Some are T3 friendly, if get nowhere with GP

    Would also write to GP. This situation is happening 100's if not 1000's of times across UK

    It is unacceptable

  • She supplements folate, B12 and vitamin D. Her levels are

    Ferritin 44 (30 - 400)

    Folate 2.2 (2.5 - 19.5)

    Vitamin B12 249 (180 - 900)

    Vitamin D 31.1 (25 - 50 deficient)

    She takes 800iu vitamin D.

  • All far too low

    Sadly far too common- we see masses on here with same problems especially when T3 is stopped

    See SeasideSusie excellent vitamin supplements advice

    Eg

    healthunlocked.com/thyroidu...

  • She has iron deficiency anaemia as well

  • How is that being treated ? B12 is also low ....

  • She doesn't necessarily need T3, just more levo as she is undermedicated - there's not enough Free T4 to convert into a decent amount of T3 - in fact it looks a s though she's converting what little there is quite well. Not saying that t3 or NDT wouldn't help, but she is just on too low a dose of anything!

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