Stop taking tablets

Hi I am 57 years of age , I have been taking a high dose 200mg of levothyroxine for over 20 years , in truth I am not sure if they do anything at all , i am constantly tired . I recently took a job which has increased my daily hours to about 12 and it includes a 1 hour commute , the issue I have is that if I am good and take my Tabs first thing in the morning 1 hour before food and never miss a day I somehow feel worse , sometimes I can barely make it home (50 miles ),

I want to stop taking the Tabs all together to see what happens , is this a good idea ???

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  • Sregor2015 No, it's not a good idea. If you have been diagnosed with Hypothyroidism then your body isn't making enough thyroid hormone of it's own and it needs to be replaced with synthetic thyroid hormone. If you are not well whilst taking replacement hormone then there is a reason. There are a few reasons:

    1) Your vitamins and minerals may be deficient. Us Hypos need optimal levels for thyroid hormone to work properly. Have you had the following tested-

    Vit D

    B12

    Folate

    Ferritin.

    If not, ask for them to be done, or do them with a private test.

    2) You may be taking other medication or supplements that could be interfering with the absorption of Levo.

    3) You may have a gut problem that is affecting absorption.

    4) You may not be converting T4 to T3 well enough. T4 is the storage hormone, some of which converts to T3 and it's T3 that every cell in our bodies need, so good conversion is important. Have you had FT3 tested at the same time as FT4?

    5) Have you had thyroid antibodies tested? Are you positive for Hashimoto's?

    Stop taking your thyroid meds and you will gradually become more and more ill. You need to look at why your meds don't seem to be working.

    What are your latest test results. Post them, with their reference ranges, for members​to comment.

  • I would check for iodine deficiency as well.

  • Heck 😮 ! No don't do that. Within 1-2 weeks you will feel truely awful and won't make it into work let alone home.

    Your on thyroxine because your replacing what your thyroid can't produce. Its not like an antidepressant that may not make much difference if you take it or not.

    Firstly do you have any of your blood results ? If not ask your doc for them it is your right tyo have them. Next post them on here and some knowledgeable people will be able to tell if you are under medicated. That may be why your feeling rotten, but there are other reasons.

    If your TSH is low and your t4 high in range you may not be converting to the usable form of thyroxine - t3. Levo - t4 is a storage hormone and needs to be converted by your body to be used in your cells. There are various reasons why you may not be either converting well or getting the most from your t3.

    Have you had your key nutrients checked ? Vitamin b12 vitamin d ferritin and folate all need to be optimal / high in range for good conversion to take place.

    When your optimally medicated with t4 and nutrients but still feel ill . Then there is always the route of taking t3 or NDT - natural dessicated thyroid - which contains t4 &t3.

    Hope that helps. I'd recommend you do lots of reading on here. Its a fantastic resource with many knowledgeable generous people.

    But please don't stop taking your levo !

  • Sregor2015,

    Can you post your recent thyroid results and ranges in a new post? Your symptoms suggest you are under medicated and you may need a dose increase. If you have results for ferritin, vitamin D, B12 and folate please also post them. Low/deficient vitamin and mineral levels can mimic hypothyroid symptoms.

    It seems likely that you have no, or very little, natural thyroid function if you have been taking 200mcg for 20 years without becoming over medicated. If you stop taking it you may feel quite well, even better, for a week or so but you are likely to start feeling very hypothyroid within a couple of weeks. It can take several months to recover after you decide to reinstate Levothyroxine.

    The member who advised you that " Goitrogenic foods are your friends" is mistaken. Goitrogens can reduce thyroid hormone and raise TSH so they are friends of hyperthyroid patients but not hypothyroid patients. Having said that, there is no need to avoid eating goitrogens, just don't eat them in industrial quantities.

  • I can see this thread had got really heated at times, but there is one possible suggestion, which is that you are overdosed on Levo but it is doing you no good, in fact the excess T4 from the Levo is 'pooling'. Or, you might be converting, but to the inactive form of T3, what is referred to as 'reverse T3'.

    This can lead to generalised pain,, breathing issues, nasal congestion and sinusitis. Amongst others! I had this problem which is why it comes to mind.

    You could try REDUCING your Levo gently, aiming to get down to say, 150mcg in gentle steps, over a few weeks, and see if the reduction helps with your symptoms, This could help you to utilise better the thyroxine you are taking. You could do this by dividing your 100mcg tablets into four and taking a quarter less on a couple of days a week, gradually increasing the number of days on the lower dose until you are down to one and a half tablets a day.

    Another thing could be to take the dose in the evening as you go to Bed.

    Finally, look at the possible deficiencies mentioned by SeasideSusie, which could be hindering full utilisation of the Levo by preventing proper conversion.

  • Have you had your iron and wbc levels checked I wouldn't go off your tablets because you will be sick get a second opinion to see if your on the right dose

  • Do you have your latest blood results? You may just be undermedicated or need a different source of thyroid hormones (NDT or T3) if you can't convert levo to the active T3 well. Lack of thyroid hormones can kill you (and it did until the use of animal thyroid as a replacement was discovered). Fatigue, aches and pains, dementia and death was what happened, so I really don't recommend stopping levo unless you start T3 or NDT instead. Do you have high antibodies> Do you still have your thyroid or was it removed?

    Do you have resuls for B12, ferritin, folate and D3, as without those at optimal levels your levo won't work properly?

  • I'm a man. I have hypothyroidism and Hashimoto's. I'm delirious about it, of course. However, if I were you, Sregor, I wouldn't stop taking the tablets. Instead, I would carefully analyise the advice you've been given here by thyroid sufferers and move forward on that basis.

    Best. S.

  • no its a very stupid idea

    firstly post the results of all recent blood tests (you are legally entitled to them so ask the GP)

    most GPs fail to understand the basics of hypothyroid and why levels of vits and minerals are so vital

    in order to help and find out why the levo is not resolving symptoms we need

    thyroid antibodies

    TSH

    free t4

    freet3

    ferritin

    folate

    b12

    vit d3

    go back to your GP and ask that all are tested because levels of all MUST BE optimal otherwise the levo t4 simply cannot be utilised and converted into the t3 that every single body cell relies on to function

  • Admin Note:

    A member has left the forum which means his posts were deleted. As context was lost, I have, therefore, deleted all the replies to his posts.

    Please refrain from commenting on this thread unless you are directly responding to Sregor2015's question.

  • Hi there

    I changed to taking Levo at night just before bed an hour or so after food and it made a big difference to me.

    I also have a gut issue so take probiotics (high strength) to help with absorption which I think is helping.

    Hope this helps might be worth a try in addition to all the other replies . X

  • My gp wouldnt hear of my stopping my thyroxine 100mg even for a few days to check if my allergic reaction was caused by that..she said its pretty important

  • I have Hashimotos. Dont know for how many years. I m taking 100 mcg Thyroxine and still feel very ill. The meds make me feeling "shivering" inside my body and still very tired. My question is: before i started this medication I had low blood pressure. Now i have very high b pressure and have to take blood pressure meds as well. This medicine makes me even more tired. Any others had the same side effect from Thyroxine as I ?

    Hanna

  • Groie57,

    Please Write a post and ask your question as not many people will see your question tagged on to the end of someone else's thread.

  • No one has mentioned selenium. You need selenium to convert t4 to t3.

  • You've got some excellent advice from all the above.replies. My suggestion is take notes or print them then reread them daily. I'm a Hashimotos sufferer too and it's taken me years to absorb the terrific knowledge from here. The above replies are a great summary of wise experience.

    Secondly get your blood tested with all the tests as suggested above and open a file and compare the results. I do this and it really helps. Post the results on here as already suggested.

    If NHS won't test you, pay for it yourself. It's worth it. In your position I'd get the tests every three months until your test results are balanced and right.

    If you can afford it, consider changing or get a good Endocrinologist. See the recommended lists of Endos published on thyroid.uk.org.

    Good luck.

  • No, definitely not. The Levothyroxine you take contains T4 but it needs to be converted to T3 in your body, so it may be you are lacking in a nutrient, or something else is blocking this process from happening. An excellent book that explains this is and gives help is "Thyroid Healthy: Lose Weight, Look Beautiful and Live the Life You Imagine

    " by Suzy Cohen. It is excellent and has helped me tremendously. I now feel great, but a few weeks ago, could hardly put one foot in front of the other.

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