Levothyroxine (50mcg) may have raised my antibodies. Do I stop it slowly or abruptly? On it for 26 months. My symptoms are mild & I'm willin

I'm willing to stop taking Levothyroxine in the hope that my thyroid gland and the conversion of T4 to T3 will improve as I explore going gluten free. Just waiting for a Food and Drink York Test result and a hair mineral test result. I was gluten free for 6 months, which had no affect on my antibodies but made me constipated. Have been eating gluten again for the last month to see if it shows up on the test. Latest test results with Ref. Range in brackets: TSH 2.37 uIU/ml (0.27 – 4.2); FT3 3.33 pmol/L (2.8 – 7.1); FT4 16.00 pmol/L (12.0 – 22.00); Anti TPO 234.6 IU/ml (0 - 34) & Anti TG 529.0 IU/ml (0 - 115)

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  • Thanks very much for completing your profile. It is very helpful to have a history.

    Your 50mcg dose of levothyroxine is too low for many of us and we are apt to get more clinical symptoms. 50mcg is a starting dose, really, and 25mcg should be used for increasing the dose until the patient feels well. Unfortunately, many doctors misunderstand/do know about metabolism and treat us only on the blood test results and not on our clinical symptoms, some of which of which we may not have had until we are put on levothyroxine..

    Your TSH is too high for someone on levothyroxine although your doctor will mistakenly believe that it's o.k. as long as the TSH is 'within range'. The aim is to have a TSH 1 or below.

    I believe that's why your antibodies have raised - undertreatment. Usually, if someone has hashimoto's and TSH is o.k. levothyroxine is prescribed in order to control antibodies attacking the thyroid gland.

    You must go back to your GP and ask for for an increase and his aim is to get your TSH to - this is a quote from the ex President of the British Thyroid Association:-

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    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).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

    He should add 25mcg today with another blood test in 6 weeks and a further increase, and so on.

    If you've not also had a blood test for Vitamin B12, Vitamin D, iron, ferritin and folate, request these also as we are usually deficient.

    We have to take control of our own health but, unfortunately, we don't realise that doctors or endocrinologists may not be the best to recover our health. There are a few good ones and many people may be fine on levothyroxine but we have to be treated on an individual 'optimum' not treated according to 'TSH'.

    Any blood tests for the thyroid gland should be as early as possible and not having taken levo until afterwards. If you take your dose at bedtime - miss this and take after blood test. Always get a print-out of blood tests with the ranges for your own records and to post here.

    Regards

  • Thanks Shaws for your very quick response. I know the results are not in the optimum range and that I should probably go up by 25mcg but I wanted to use this time/opportunity to see what happens if I come off the Levothyroxine before I go up as I've heard that once you've taken Levothyroxine for 18 months your thyroid is no longer able to produce thyroid hormones itself or that the messaging between pituitary gland to the thyroid gland is lost (not sure if I'm correct on that or have properly understood stuff). I forgot to mention that I started taking iodine 2 months ago and this did not raise my antibodies so maybe if I continue with the iodine it might help. My Vit. D, B12, Zinc, Selenium, Iodine, Magnesium, Cortisol, Ferritin all OK. But high folate and always 1 point over the range with Bilirubin. Maybe I have mild Gilbert's Syndrome. I've been tested for a variety of other autoimmune diseases such a Sjogren's Syndrome (as I have dry mucus areas & had a frozen shoulder in the past) but luckily test negative. I did test positive twice for parietal antibodies and the third time I was just into the negative range. At the time my Ferritin & B12 was lowish in the range but my folate was over the range. I took B12 sublingually and this is when the parietal antibodies went into the negative. Weird and interesting. Felt better when on the B complex and B12. I haven't had the parietal antibodies tested for ages though.

  • This may be helpful in reducing your antibodies. I believe as you say that gluten free has helped some members. If you search gluten posts will appear.

    hypothyroidmom.com/how-i-in...

    Also, if anyone is diagnosed with a thyroid gland dysfunction they cannot stop levothyroxine, unless it is a temporary phase.

  • Well if you want to try to stop levothyroxine that's your decision but I hope you don't have adverse effects.

  • Me too

  • Hi Shaws, wish I had listened to your advice. I started coming off Levothyroxine slowly and was absolutely fine for the first 3 weeks but then started waking up with quite bad headaches and feeling groggy. And was generally not feeling too good. Went to the endo and she has raised my dose to 75 mcg so will see what happens. I recently got the book "Hope for Hashimoto's" and read a very good explanation of why I should aim to get TSH to 1 or less and it doesn't necessarily mean that I have to remain on Levothyroxine for the rest of my life although the last ultrasound seems to indicate that my thyroid gland is tiny and burnt out. Wish I had read this book 2.5 years ago when I first found out that I had Hashimoto's. Thanks again for your advice. I will pay more attention to it next time ;) xxx

  • We all learn the hard way at times. It is a minefield to go through. I hope you will feel better in a few weeks, as it takes time for our body to stabilise.

    There is another good book, I have been told, but am sure your's will be fine.

    thyroidlifestyle.com/

  • I think that eventually the antibodies will destroy your thyroid, so you need to take thyroid hormones. If anything, you need a higher dose. At least then there is a chance that the destruction of your thyroid will slow down. Gluten-free might well help.

  • Hi Angel of the North - yep -should have followed your advice, tried coming off slowly, didn't feel good so went to see endo who prescribed a higher dose. I also read a good book "Hope for Hashimoto's" explaining why the levels of TSH should be very low to slow down the destruction of my thyroid. Unfortunately my silly experiment on my self has probably caused more damage. Thanks again for your advice though :) xxx

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