Hashimotos; when does the thyroid stop working?

Hi guys,

I take levo since november 2014, levels keep going up and down and that makes me feel unwell. Today I had my appointment with the endo to discuss my latest blood results. They also checked antibodies and they were very positive so the endo told me I have Hashimoto's disease. As you all will understand, after 7 years of being told it is all in my head I felt like I won the lottery.

The endo told me that the Hashis will destroy my thyroid till it stops working. Untill then I will probably keep having this up and down levels and need to keep adjusting my dose. I asked him how long it will take till the thyroid stops working but he said that it is very individual.

Of course I understand that but I would like to hear what your experience is. Months, years?

(I know there are things you can do against antibodies, I've tried a lot already and read a lot so I don't need advice on that)

38 Replies

  • Hi, Sorry I understand the rollercoaster ride. I've been on it 17 years I can't believe it. Gluten free does seem to help a lot though.

    Good luck.

  • Thank you jobeth. How long did it take for your thyroid to stop working because of the hashi?

  • Hi there, well it's been 17 years , I'm 50 now and unfortunately it's still burning out. I still get swings and flare ups but I manage better now.

    I got off the gluten and dairy as it just was like throwing wood on the fire. I've pernicious anaemia too. I self inject b12 and keep my iron up and it helps the hashimotos somehow. I got the pernicious anaemia before the hashimotos thyroiditis. It's been a battle but mainly because I've had rubbish support from drs and endocrine specialists. Just was treating it like regular hypothyroidism but it was autoimmune and they never helped that side or even told me it was hashimotos. I was given thyroxine and tsh watched and told go away.

    I've helped myself and done a better job. On nature throid last 6 years..

    Don't despair.

    This forum is the best place and Stop the thyroid madness website helped me a lot.

    Don't let it rule your life . Just take all your vits and minerals and eliminate at least gluten if you can and read up much as you can.

    You take care now.

    all the best.😊

  • Thank you jobeth. That's awful to still have swings even 17 years later. I hope it will not take mine too long.

    Thanks for your tips, I ate like the Paleo diet for 1,5 years without feeling a difference. I now eat gluten and sometimes a bit of dairy without any problems. But everything that I eat is fresh and from the best quality so that's a good thing.

  • jobeth..you are lucky. I have no choice, this rules my life. I am in bed 15 hours a day and now developed pain all over my body and i am properly medicated on t3 only and can't raise. Am at the maximum dose i can take and not go hyperthyroid.

  • Oh God I am sorry, I don't know what to say for the best for you.

    I used to stay in bed a lot and felt bad on Levo only, but things are far far better on ndt. I also self inject B12 for my pernicious anaemia.

    My symptoms over lap at times if I don't get enough b12.

    I sincerely hope you get some help and get to the bottom some how.

    I feel terrible for you.


  • It's ok, Thanks..just wanted to let people know, that it is impossible to not let autoimmune disease rule your life sometimes, if your symptoms make it impossible to lead any kind of normal life..it isn't just mind over matter.

    I am glad you are doing better on ndt.

  • How terrible, so you know what i mean! T3 was my last resort on meds and it didn't work either. I thought ndt would help, but it made me worse than i am now. I have had food testing done and been on the diet for over a year and still getting worse. I now eat what i want because diet made no difference. I am seeing a Integrative medicine doctor, trained by Dr. Mark Hyman, if you have ever read his articles online. I hope they can help me and my son who is not well.

    I am very grateful for the internet, as must you be, or you might not be here today! Do you have to self treat? I have left all my doctors..they treated me like i was crazy, made me feel really bad emotionally. They just didn't get it, none of it. Didn't even recognize the symptoms, even common ones. I have been to at least 25 doctors since 2008.

  • Well we all can't be wrong and crazy with what we feel with these symptoms and what we are saying about these so called doctors.

    I wish you well and remember your not alone at all.

    Hugs xxx

  • Thanks so much. I think the doctors do think we are all crazy and need antidepressants.

    No we are not alone. Take care and good luck!

  • It is so sad to read but also something I think we can all relate to.

    It affects so much and that is hard. I'm very positive and finally getting a diagnosis besides "you are depressed" makes me feel great. Of course besides that I feel all kind of emotions because if I didn't kept reading, learning and going to doctors I wouldn't have come this far.

    It is sad we have to fight so hard and long whilst feeling ill.

    Knowing what is going on in your body gives you the power to keep going. For me it does. There were times I wanted to give up, what is a life worth when you are to ill to join everything? Nothing. But now I'm so glad and proud of myself that I did this and it was all worth it.

  • You may have read a lot, but have you read that you need your TSH suppressed to stop the antibody attacks? If your doctor keeps upping and downing your dose according to the TSH, you're never going to get there. As a general rule - doesn't work with everybody, though - no gland activity = no antibody activity. Worth a try. Unless you want your thyroid to burn out?

  • Hi greygoose, thanks for your answer. The problem is for now that I keep swinging from hyper to hypo and back. My TSH was suppressed (0,01) and now it is 3,0. I do not get treated based on TSH, they told me again that they treat how I feel and not what my blood says because it is very individual which levels are optimal.

    My goal is a TSH around 1 and FT4 in the upper range. When this was the case I felt better but then I began swinging again.

    Because of me not feeling well plus my blood results I need to up my dose.

  • Yes, it's good to have a goal, but if your TSH is 1, that means the gland is still being stimulated slightly, and that means the antibodies are being stimulated. So, you're going to keep on swinging!

  • I understand but it was suppressed for like 3 months, I then got hyper (FT4 was too high) so decreased a little bit and TSH kept being suppressed but FT4 dropped and not just a little bit. And now I have suddenly a TSH of 3.

    Really annoying this whole thyroid thing, as long as it keeps swinging I can't stay on a dose or find out which dose is right for me.

  • Well, noting happens instantly, it all takes time. Besides, TSH and Ft4 means nothing without the FT3. Your FT4 may have been high, but maybe you needed it that way because you have difficulty converting, and maybe your FT3 wasn't very high. If you lowered your dose of T4, the FT3 may have gone too low and that's why the TSH rose.

  • I know, that's why I asked to get the FT3 also tested to see if I was converting well and to see if I was hyper. Both FT4 and FT3 were too high and besides that I felt hyper.

  • ok

  • You are right, when I suppress my TSH, the antibodies go down and even end up unmeasurable. My problem is a family doctor who is freaking out about my TSH (<0.001). She keeps telling me that is not good for my heart...to her, my TSH means I am overmedicated, so hyperthyroid, even though my FTs are within range...

  • Oh dear... Try asking her for proof that it's not good for your heart - a paper or an internet link, some sort of research. She won't have a leg to stand on!

  • Good idea, I will!

  • My treatment started 13 months ago and TSH dropped to 2.6 after five months but I had palpitations (which I blame on an antihypertensive) so the Levothyroxine dose was cut back.

    Since then I've had a gradual increase (25mcg every other day) of Levothyroxine every two months. TSH has been 3.4 to 4 despite the increasing dose, and 3.8 was what I had when I first went to GP with problems nine years ago (normal range 0.3 - 5.0) .

    Last test, TSH was 1.4 but GP agreed to another increase as my oral temperature had been 34.8C. I'd been through a cycle of bad throat, then eyes, then the aches came back so, despite the "good" result I'd felt pretty bad.

    My GP would've been happy to leave me with a TSH of 4.4 after three months' treatment.

  • Strange isn't it? That's why I'm glad my endo said we treat how I feel and not what my blood results. Good luck!

  • if you go by TSH only, as you see to do..this isn't an accurate way to dose. There are other thyroid hormones to check, that are more important,namely ft3. What if you don't convert your levo. to t3? Levo needs to be converted to t3 to work.

  • I don't deny that.

    I included the numbers because I see them asked for so regularly, and to illustrate how I felt with them.

    I was surprised by the recent drop in my TSH as I'd felt worse, but used my symptoms as the basis for requesting a higher dose.

    I'm giving the conventional route an honest trial, without being sidelined (by my doctor) halfway to the destination. I acknowledge that there could well be better options and my life could literally depend on them.

    If there's no crock of gold at journey's end I may be able to fork out for testing and see where my FT3 is at. My GP told me it's at the whim of their lab as to whether they test for it. In my experience they do if the TSH is below range. Antibodies were tested with the third FT3 in a rising sequence above range.

  • if you need to, order your own tests. I think it's criminal that the tests can be ordered but the lab may not do the test!!! It doesn't happen in the US. But our insurance company's. seem to make the decisions on how we get treated!!

  • The official guidelines in the UK regularly mention avoiding over-testing for all sorts of conditions. I've been put on a different statin, without being retested, despite my TSH being much better than it was for the last test. The guidelines state that a statin shouldn't be prescribed until the thyroid condition is treated and they are more likely to cause muscle damage in the hypothyroid.

    I had blood tests for a problem and an unrelated one came under and another over range -- but they seem to be brushed to one side :-(

  • I just don't even consider TSH anymore. Mine is very low, suppressed, since starting thyroid treatment, which would cause most doctors, to lower my meds. So i have to stay away from doctors. I refused to go on a statin again. I became weak and could not walk stairs, on 2 different occasions, after just a few days on them. I am more interested in finding out why my cholesterol is high and treating that. Too much of a coincidence, that it is not thyroid, when my entire body fell apart at the same time... i have lots of other symptoms too. My cholesterol dropped 50 points in 4 weeks on Armour Thyroid.

    What was your unrelated problem?

    I have not found anything not related to autoimmune or thyroid..really.

  • I'd asked for tests related to burning feet syndrome. Doc thinks B12 is OK but it could be a factor. One of my other symptoms could be linked to MS.

    Unrelated problem is slightly low serum calcium. OK, it's probably related to Vit D status, but Doc assured me it wasn't due to hypoparathyroidism, though its hormone hadn't been tested.

    Just realized it was probably stopping Atenolol that led to the drop in TSH.

    Had a consultation with someone higher up and questioned the role of T3 and lack of testing, but no answers, just the option of a "drug holiday" and/or change of prescription for hypertension.

  • OMG..my feet have been burning, they get red and feel hot, hands too. It started recently and i have bad fatigue too.

    Do you have MS?

    I am sick of feeling bad and sick of doctors.

  • Regarding burning feet, the link below is to an overview of various causes of burning feet. Not in depth but fairly comprehensive.


  • thank you

  • Sorry, not burning feet syndrome (where sweating is involved), just burning feet with pins and needles, which I guess is small fibre peripheral neuropathy.

    I've not been diagnosed/tested for MS, but mentioned the possibility at my last appointment.

  • There is such a thing as Hypothyroid Neuropathy..google it. Your symptoms are very common to those with hashimotos/hypothyroid

  • I didn't want the problem to be placed under the hypothyroid "umbrella" as it looks as though neuropathy can worsen and be permanent. That would be more likely if I'd agreed with GP's assertion that TSH was now fine. I'd reported being able to stand for as long as I wanted and feeling warmer after the dose increase that may have caused palpitations a few days after (though the antihypertensive can also, and my starting dose was higher than recommended!).

  • Low thyroid can cause nearly every body function to not work correctly. google "hypothyroidmom ..is your thyroid killing you?"

    If you don't convert t4 to t4 well, you can get hypothyroid and hyper symptoms both, as it causes a kind of toxicity. High blood pressure is very common in Hypothyroid ism and well as the neuropathy. If you insist on going by TSH for treatment, you will suffer many symptoms. and be on more and more meds. That's what i see on this forum, again and again.

  • holtorfmed.com/5-thyroid-li...

    also found this.

    This same dr holtorf has info on reverse t3 as well, if you google it, with his name included.

  • Most people are not diagnosed the minute they get the antibodies, so how can anyone answer how long it takes? Don't mean to sound nasty, really how would anyone know. i got symptoms of being hyper in 2008, that went on for 9 months, then in 2010, i got symptoms of going totally hypo. I was not diagnosed until 2011. I have no clue how many years i had antibodies. It could have been 10 years.. thyroid looks perfect, but stopped working, due to hashimoto antibodies.

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