Do not want to take Levothyroxine anymore

Has anyone here come off Levothyroxine and decided to manage their Hypothyroidism through diet, vitamins and minerals. I am only on 50 mg Levo for 10 months, buts its making me crazy and so unwell. My GP has said there is no alternative med that I can take in its place. I felt better when I was taking nothing. If they did, how did ye do it and were ye better off

Thanks so much for all the great help and advice

10 Replies

  • I tried to do that with acupuncture and Chinese medicine (under a very highly regarded doctor and later with other recommended practitioners) before I went on thyroxine and not only did it not work, but I got increasingly ill and unable to manage and my hair fell out. By the time I went back to tell my gp that I was ready to go on the levo, I tested within the normal range and they didn't want to treat me.

    In theory my 'normal' tsh would have indicated that I was 'better' (it went from in the 30s to around 5) but I was very ill indeed.

    Are you very confident that you are on enough medication to feel well? What do your tests show? 50mcg is generally thought to be a starting dose, and I wonder if your gp is just keeping you within range, which can make you feel awful.

    You can always try adding t3 or see what ndt does for you. Levo is not the solution for everyone but if your thyroid stops working, you will need to replace the hormones it is not providing.

    Without seeing your test results, I think you're more likely to need more levo rather than none, if only to rule it out as something which will or won't return you to wellness.

  • Thank you puncturedbicycle

    I live in Ireland, so am not sure if she will prescribe as she said that Levo is the only drug to treat hypo

  • That's okay, they generally all say that and there are a lot of ways around it, but in the meantime you need to be on enough levo for long enough to know if it is working for you or not. Do you have a printout of your blood test results? That might show what is going wrong.

  • Hypo, once in a while this can be a temporary condition but for the most part it is a deteriorating condition and the longer it goes, the longer to turn it around. A little insight into just how involved having low thyroid is.

  • If you have been diagnosed as being hypothyroid you must take medication for the rest of your life. If you stop without first considering options (which you may not have in Ireland) you can cause serious damage, i.e. heart etc.

    Levothyroxine is used by hundreds of thousands of people worldwide. Some do fine but some dont. Too low a dose will not give you relief from your symptoms and it seems to me that your doctor doesn't even have basic knowledge.

    First ask for a Full Thyroid Function Test (some doctors think once your TSH is 'within normal range' that's sufficient medication. It's not unfortunately. A FTF test consists of TSH, T3, T4, FreeT4 and Free T3. The frees are the most important but many labs don't do them if TSH is 'in range' so the patient/doctor has no knowledge of whether the T3 is low or high. T3 (liothyronine) is the active hormone needed in all of our billions of Receptor Cells in order for us to function normally, from brain to toe.

    Don't take levo on the morning of your blood test and have it as early as possible. Take it after. Get a print-out of your blood test, with the ranges, and post on a new question for comments. Tell doctor you want to keep a record of your tests. At the same time as your thyroid hormone blood test, ask for a Vitamin B12, Vit D, iron, ferritin and folate if you've not already had these done. A deficiency can also cause problems and many of us are deficient.

    This is a link for information. At the top of the page there are other topics as we have to read and learn if we want to recover our health. Go to the date November 28, 2003 to read plus the other questions are helpful.

    Also, I don't know if your GP will be interested in information from the ex President of the British Thyroid Association but you can email and ask for a copy of the Pulse online article. Question 6 gives helpful information and your doctor might also learn something.

    Before the blood tests were introduced we were treated with a natural dessicated thyroid hormone and the average dose was around 150mcg/200mcg or higher, whichever gave the patient back their health.

  • your gp is talking nonsense of course there are alternatives to levothyroxine but cant see why unless your allergic to the fillers in the tablets or you cant tolerate synthetic meds why just 50mcg would cause so many problems

    you need to post your blood tests and the actual pharmacy company that makes the levothyroxine you have been dispensed by the pharmacy

  • Thank you all. My GP will not do any T3 related test. I got the name of a supposedly good endo who is based around 300 miles away. I thinks she is around €200 per visit. However, I am concerned that I will have to go through several increases of levo before she will try a different approach. As I am unemployed, I am wondering if I should try a differeny GP who may increase the levo before paying a large sum of money to see an endo soon. To those who have seen an endo, is an increase of levo the first thing they try?

  • Do you know what your last test results were? They should indicate whether or not you need an increase.

    In any case, I would recommend that you spend your money on private testing if necessary and skip the endo. For straightforward Hashi's they are often useless (although having said that my nhs endo did recommend an increase in the paltry dose of levo my gp had me on.)

    Many times feeling ill with Hashi's is a straightforward case of undermedication which is obvious when you see your test results if you know what to look for. Some people continue to feel ill on what looks to be plenty of levo and need to try other meds.

    Do you know about the quote from the Toft book about keeping your tsh around 1 to feel well? That may be helpful in persuading your gp (if in fact you need a higher dose of meds).

  • I had been taking 25mcg of levothyroxine since July and with support of my GP have recently stopped taking it. I have been having acupuncture and taking Chinese herbs, stopped all caffeine, gone gluten-free, cut processed foods and most sugar (I did these changes gradually, not all at once). I've lost weight and feel loads better with all these changes I've made. I want to see if I can reduce the auto immune reaction and boost my thyroid function naturally. I'm realistic about the fact I may well need to go back on medication eventually but feel our bodies are so finely balanced and western medicine is just such a crude approach that seems to require a cascade of further medication to fix all the other problems it causes. I think on one of your previous posts you said you tested negative for thyroid antibodies - personally I think this puts you in a better position and means diet/ lifestyle changes have more hope of helping things for you. Decisions about medication aside, boosting your nutrition levels and improving your diet should help you feel better anyway so perhaps introduce some changes and see how you feel - ferritin being low can wreak havoc in lots of areas of health.

  • I don't think this is possible. I already had a thyroid problem but wasn't treated. I'm eating Paleo, taking lots of supplements (vitamins + minerals). Couple of months later again a blood test for the thyroid and it was just the same, even a bit worse than before. So I'm now on levo since november.

    If you feel this bad you want to get a blood test and check how your thyroid is doing. As long as you're not taking the right dose you will not feel better.

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