not feeling benefit of thyroid medication yet

I am 28year old female.I am newly diagnosed with hypothyroidism (7 weeks) I have been prescribed levothyroxine, I was on 50mg-but after 5 weeks of feeling worse the doctor upped me to 100mg. I am still feeling nothing at all, My tsh level was 80-My gp actually said it was the most hypo result she had ever seen. However I asked if I had hasimoto's which she replied 'probably' I am now debating buying test myself (the one that checks vit d,folate,ferrin..etc. I have coeliac disease also (two years diagnosed-) I have had terribly time last couple years feeling poorly/run down/exhausted and now I am worried that I haven't felt any improvement (I didn't expect anything overnight) has anyone got any advice or tips to help- I am also interested in how to get endo referral, I find my GP's nightmare, and like anyone with coeliac/thyroid disease/autoimmune disease you tend to find Gp's aren't great and we know more then them-very frustrated today :-(

9 Replies

  • 7 weeks is no time at all if you think of how long you have been hypo for. Levo/T4 is a storage hormone and takes 2 weeks to even begin working and you must take it every single day first thing in the morning on an empty tummy and wait for an hour before eating foods/milk drinks.

    This is a condition that takes a lot of patience to get well once your thyroid blood numbers are optimal. You could also look into the various vitamin deficiencies that can go hand in hand with hypo.

  • I think it would be an excellent idea to have the Private test with Blue Horizon through Thyroid UK. Then you will know where you are with the TSH - FT4 - FT3- Anti-TPO - Anti-Tg and the vitamins and minerals. Ferritin - Folate - Iron - VitD - B12.

  • Hi autoimmunekate - I have the same. Been diagnosed 3 months ago with hypothyroidism with a TSH over 100 ( their tests didn't go that far up). It's good your gp is taking decent strides up in meds (rather than 25mg increases as many gp's) I actually felt SO much worse before I felt better, it took about 2.5 months and was about 3 weeks after I got on the right dose then suddenly a cloud lifted - I felt like super hero! As a rule of thumb you should be on 1.4-1.6x your weight in kg of Levo every day so you can work out if you'll need another increase. Also your TSH should be in the higher range for you to feel well (mine is between 20-26 but every lab is a bit different)

    As your gp says your hypothyroidism is highly likely Hashimotos, especially wth coeliac too. Push them to test for it though, tell them you'd like to know what caused it rather than just treat it! Same with the vitamins, get tough and take copies of the research you have. Also worth looking on the NICE website, the protocols the gps are meant to follow.

    I know this is little consolation but once you get the right dose and it kicks in, it works quickly and you will feel better. Give it another few weeks.

  • Lemonem,have you wrongly typed your TSH ? 20-26 is much too high.

  • You should have a blood test every 6-8 weeks until your TSH is about 1 or below.Unfortunately GPs rely entirely on TSH which is produced by your pituitary. You need to know your FT4 which converts to the active hormone FT3 which you also need to know ,as well as D3,B12, ferritin and folate.You should also have your antibodies tested.When you have them post them for comment. You need to learn about your illness .Start at Thyroid UK and Thyroid Patient Advocacy.

    Two years ago my TSH was 101 it is now 0.18. Some symptoms went fast but others lasted over a year,two years on I still have cold feet and poor balance but these could have other causes.

  • hi there autoimmunekate , if I could give my tuppenceworth , in my experience for my lady -- who now has a semblance of her life back -- the first meds [ levo/carb etc ] generally take at least 8-10 weeks to ' hit home ' in your system to make any real difference to YOU , if you have a reasonable gp or endo at first they will insist on at least a 2 week test for tsh [ better to be in the lower part of the range -- or aim for it --] t3/t4 [ higher part of the range -- labs have different ranges for their tests --] folate, ferretin , vitd3 , vit b12 initially ..... but these all need to be constantly monitored at each blood test ...... our gp always writes on the form for ALL TESTS and adds ' as requested by consultant ' and if not done follows up to the lab and insists they carry out instructions ---- after all its his trust that pays the lab fee's --- .. the important thing is you need to have your problem monitored correctly at the initial stage onwards to allow for adjustments to meds as and when needed and to allow the time for them to have an effect on your system .........I hope this may help you ...... alan xx

  • Hi Kate, I am fairly newly diagnosed like yourself (4 months) but I feel so much better now that I am on the right medication so just want to give you some hope that things will get better soon! I found that taking B12, folate & D supplements made just as much difference as the levothyroxine. You need to buy the sublingual B12 from Amazon as you will have absorption issues. When you get your levels checked do not be put off by the GP saying you are 'in range'. You need to be optimal. Sorry I forget what the numbers are supposed to be but you can do a search on this website as other members have posted. (Suffering from a little brain fog this morning but I promise you I feel that I have my life back now).

  • Hi I also had a really high TSH. I took a long time for me to get well. Also went from levo to synthroid. From what I read on here if you really are unwell for a long time........... it just takes longer to get well. My Doctor just went with the numbers and could care less about my symptoms. I was such a mess and its was so hard to see an endo............ I just stuck it out with him. It takes a lot of patience.......... Everyone has there own experience......... but it took me well over a year for many of my problems to go away.................. I also ended up with my gallbladder out and I believe that also was connected to my whole system being messed up. Including knee for that....and other muscle problems............... No one ever looked at my thyroid seems crazy......I wish you well and hope you being way younger than me will heal quicker. I guess we all know what a mess it can be and hope to support each other. Thinking of you Susita

  • Thank you all so much for your replies, its really helpful to hear people with similar experiences as often those around us don't get it. cant wait to feel even a little bit better

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