Levothyroxine - still suffering second time

Hi All, I was taking 50mg Levo for 12 months, despite several blood tests that my GP said my T4 and TSH were in normal range, I continued to feel very sick, no sleep, exhausted, dizzy, no memory, aches and pains, sore joints from head to toe, severe headaches, blackouts and dizzyness, crying constantly, feeling suicidal. I sais to my GP if if it was possible I was underdosed, she said no and in no uncertain terms that she would not increase my dose. At that stage, I decided to go off the Levo for 6 months. When I told my GP that I never felt better, she said that I would have to start taking Levo again. I have now been taking 50mg Levo for 3 weeks and I never felt worse. I am exhausted all the time, my memory is wiped out again, I have severe nausea, dizziness, aches and pains all over. The only positive is that am sleeping better. Is there any hope that Levo will work in time if i stay patient. I am at my wits end. I am totally non functioning, I barely leave the house. I am worried that the exhaustion and memory loss will prevent me getting a job. Any advice would be greatly appreciated. As it is a hidden illness, my family dont understand and just think am lazy and a hypochrondriac. Has any one had success not taking the Levo or is there an alternative that is working well for people. At the moment, I feel as if am non existent, I cant partake in society and am totally miserable and alone

14 Replies

  • Hypo-Hell, I'm sorry you feel so ill. It takes 7-8 days to absorb the Levothyroxine and 6-8 weeks for the full impact of the dose to be felt. You should have a blood test 6-8 weeks after starting Levothyroxine again to check levels. Leave 24 hours between last dose and blood draw and having a fasting test, apart from water, early in the morning when TSH is highest. Post the results with the lab ref ranges and members will advise whether the dose is optimal.

    If you were previously undermedicated that would explain ongoing symptoms. Most people will be comfortable with TSH just above or below 1.0 with FT4 towards or in the top quadrant. Make it a habit to ask for your actual results (and the ranges) because 'normal' is an opinion and isn't necessarily the same as optimal.

  • If you feel better off of Levo, then maybe you don't really need it. I would do what makes you feel best. Do have any labs that you could post?

  • clearly theres a good reason why on levo you feel worse than off it

    However without knowing all your blood test results and why your GP wont increase your dose or try something else we cant tell you

    get a copy of all test results inc ref ranges

  • Hi there, have they tested your B12, ferritin and folate levels too? If these are low they can cause symptoms similar to underactive thyroid, also the Levothyroxine won't work as well. Usually 50mg is a starting dose, and as you have been told it takes time before you feel it working. Once they test the levels again it will normally mean an increase, until they find the level that is fine for you. Sorry to hear you are feeling so bad at the moment. Best wishes MariLiz

  • Hi again, just wondering did they test for antibodies? There is Hashimoto's Thyroiditis, where the body produces antibodies that begin to attack your thyroid gland. If this is the case, I believe the treatment will be a little different. MariLiz

  • oh dear poor you . not nice. i know how you feel ive had underactive for years on medication. then last september felt like you. so went to see a specialist.with blood test found out antibodies were very high 625 should have been up to 100. ive now managed to get done to 400. he told me i had to eat more protein. this helps with the antibodies. which try to distroy any good the thyroid does, so go see a specialist. im on Levo 88.may have to go upto 100. i am stating to feel better. much better than last sept . i see specialist again . in september saw him in feb the last time .so all i can say is good luck. hope picks up soon. i used to just cry over nothing . so like you i stopped going out. could not control it. but now far better. even had 1 of those tine frida nightwhilst out haveing dinner for no reason. but at least my partner

    understands. as many people dont . good luck .patricia

  • Levo didn't work for me and made me feel very ill, with many symptoms like you havw. My body won't convert the T4 to T3, so the Levo was just sitting in my body. ALSO, levo has gluten, and if you have gluten sensitivity that can make you feel ill.

  • Levothyroxine doesn't contain gluten - certainly not all brands contain any gluten. I am coeliac and follow a strict GF diet and take levothyroxine. It is fine.

  • Dear Klagh, how did you find out you couldn't convert T4 to T3? I've been on 100g Levothyroxine for several months and only had a day of feeling good in all that time. I'm seeing my doctor this week to ask him to do more thyroid tests, but need to know which ones, can you help? Thx.

  • Mitsy, to find out if you're converting or not, you need to have FT4 and FT3 tested at the same time. If the FT4 is higher in its range than the FT3 in its, then you are not converting. The FT3 needs to be the highest.

  • Thank you. I forgot to say that x

  • I know how you feel my family think I'm lazy brain fog and exhaustion nobody understands until thay get it themselves I am 55 feeling 75

  • After 10 years on levo and 18 months of increasing debilitation (muscle pain, joint pain) I stopped taking levo. Joint pains diminsihed in a couple of days. After 8 weeks off levo I was falling asleep by 2pm. Have now been on T3 (liothyronine) for nearly a year. Managing much better. Blood test results still not good but hopefully, slowly getting there. Had to go to an endo to get the T3 prescribed.

  • After 12 months of feeling worse on Levo, my GP refused point blank to increase 50mg to 100mg. As I could not take another year of being severely debilitated, I stopped taking it for 6 months, never felt better, however last blood test GP insisted I go back on 50mg as TSH and FT4 rose to 11 and 19. She will not take FT3 or any linked blood test. Have 0 antibodies for Hashis

You may also like...