Help hypersensitive to thyroid medication

I was diagnosed 2006 and spent the last 10 years on thyroxine with no ill effects, just popped the 200mg pill and life was great! Jan  this year had a small bout of virtigo and 2 days later started to have extreme tremors in my head, nausea, severe anxiety and panic attack do couldn't get out of bed had my levels tested and had been overmedicating so dr pulled me off, symptoms persisted for another 2 weeks, I felt great after that and thought maybe I was healed, so week 5 off the meds I had a check and tsh had gone to 111.8, dr ordered me to go back onto 100mg of thyroxine, within 20 mins I felt it poision me, so tried to stay on it for 5 days, on the 6th day I tried t3 tertroxin only but it's made me feel the same, so after 2 weeks we tried thyroxine again at 50mg same allergic responses! I scared out of my mind and so incredibly sick, please someone what can I do????

53 Replies

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  • Nordidordi,

    When I reintroduced 100mcg after being off all thyroid meds for 4 weeks I had an adverse reaction within hours.  2 days later I added 20mcg T3 to Levothyroxine and the T3 seemed to calm the adverse effects Levothyroxine caused.  I've been fine on T4+T3 combination since.

  • Im only on t3 now for the last wel but the symptoms are horrific. I really don't know what to do! Thinking of coming off And trying to get rid of Levo build up

  • Nordidordi,

    5 weeks off thyroid meds should be long enough to have got rid of a build up of Levothyroxine.  It's unlikely to have built up in the few days you resumed taking it.  Maybe you could try 50mcg Levothyroxine plus 20mcg T3 taken together.

  • I did try that also! It's a terrible situation to be in!! 

  • May I ask what your adverse reactions where? 

  • Nordidordi,

    I felt poisoned when I was switched from T3 to Levothyroxine.  15 months later I was 90% bedbound with shortness of breath, palpitations, agonising fibro pain in arms, neck and back, tremors and shakes, weakness and dizziness on standing for more than a few minutes.  I'd stopped Levothyroxine on another occasion for 3 weeks and symptoms improved but got bad again when I resumed it.

    I suspected a build up of T4 and stopped Levothyroxine for 8 weeks, taking T3 only.  I felt no better and in desperation stopped taking T3 for 4 weeks.  That did the trick and symptoms more or less resolved during the 3rd and 4th weeks. 

    When I resumed 100mcg Levothyroxine after being off Levothyroxine for 12 weeks (TSH 107.5) I got palpitations and tremors within hours and was becoming breathless on the 2nd day.  That's when I found adding 20mcg T3 calmed the symptoms.

  • Omg my brain fog is lifting !!!  Been on 125 thryroxine a week after being on 100 for 3 years ,,,, never mentioned t3 added no wonder I feel I off nuts now am in menopause !!! I have memory problems and concentration ...I imagine every illness going please help what do ..glad hear you are well

  • Only trouble is I had radioiodine 

  • Chris1961,

    When you are able to post your thyroid results and ranges members will be able to see whether you are optimally medicated and will advise.

  • Hi 

    I was on levothyroxin for 12 years but my symptoms persisted... Extremes tiredness and brain fog... 2 years ago I started to experience what I believed to be side effects from taking thyroxin, but my doctor put this down to the menopause and my age!!!!

    I've changed my doctor since and I have a private prescription from my new Doctor,  which is Armour. This works much better for me helping me feel normal again.  

     

  • Hi clutter I have decided as I am exactly like you and the tremors and anciety and burning skin and fatigue is not much improved on t3 only I would like to slowly add back in t4 to see if it works I m currently on 50 of t3 and started pm 12,5 of t4 this morning, last time it took so long to come out of my system I want to take it slow increasing my t4 do you think this could work?

  • Nordidordi,

    If I was you I would wait another month or two before adding T4. It can take take up to 14 weeks to clear a build up of T4.

    I don't really see the point in adding tiny doses of T4. I'd be inclined to try 75mcg T4 plus 25mcg T3 and see how you do on that combination.

  • Can you also tell me would you just swap in a day to that routine? Or would you suggest I come off t3 like you did?

  • Nordidordi,

    If I'd stuck with T3 only longer I might have spared myself a very hypo couple of months. I don't regret it because it cleared the build up quicker than it may otherwise have cleared.

    You can swap straight over from 50mcg T3 to 75mcg T4 and 25mcg T3 when you are ready to do so.

  • Sorry for all the ?? Clutter but did all the symptoms go as soon as you added the t3 after 2 days and also why more t4 to t3 ratio?

  • Nordidordi,

    Pretty much so, yes.

    T3 is 3 x stronger than T4. 25mcg T3 is equivalent to 75mcg T4 so the ratio I suggested is 50:50.

  • Thanks so much, last ?? How do you dose? Do you do it all of a morning? T3/t4 combo? And how long did it take to feel better again?

  • Nordidordi,

    I'd take half the T3 with T4 in the morning and a second dose of T3 at bedtime. It took me several months to feel better because TSH was 107 and I'd been very unwell on T4 for 15 months.

  • Did you take the same brand that made you feel unwell or another?

  • Sorry also this has caused me complete insomnia did you have that problem? I have been using lorazPam to sleep but also want to remove that! Do you take vitamin supplements to help at all?

  • Noridordi,

    All three generic brands of T4 available in the UK made me feel ill, one slightly less than the other, so I was stuck with it.

    Yes, insomnia was very bad and I used Zopiclone 7 x month. Once I was stable on T4+T3 sleep improved tremendously and I rarely need a sleeping tablet now.

    Blood tests showed I was severely deficient in vitamin D, deficient in folate, low in B12 and had high ferritin. I supplemented to correct deficiencies and still supplement vitamin D, B12, B Complex, vitamin C, magnesium and zinc.

  • How long did it take for the tremors take stop? They make me so unwell!

  • Nordidordi,

    Tremors ceased about 10 weeks off T4 and 2 weeks off T3. They started again when I resumed T4 and stopped when I added T3 a couple of days later.

  • May I ask what brand of lrvothyroxine you take?

  • Nordidordi,

    Actavis (available in 50mcg & 100mcg) and Wockhardt (25mcg). Wockhardt has less fillers than Mercury Pharma and Actavis.

  • Can I ask why you didn't just try t3 only at that stage? I think I am going to have to try going without anything again, but I'm scared of going into a coma 

  • Nordidordi,

    I don't think it occurred to me to try T3 only when I'd cleared the build up of T4.

    I don't have a thyroid and was no near going into a coma 4 weeks off meds but I wasn't fit for much and was in bed mostly.

  • It sounds serious.   I have both G and H disease.  Vertigo whilst waking up is a serious warning sign.  In my case anyway.  I was dismissed by my then GP telling me I had some "bug" - went on to have strokes.  That was a few years ago.  T3 is great if it works but it's important to be very much aware that it is a very powerful drug.   How old are you?  

  • Abrupt cutting off any hormone sounds suspicious

  • This post has really caught my attention I've been on levothyroxine for over 10 years I started out on 100mg, then 125mg, then 175mg and now reduced to 150mg. 

    Since last year I've had bouts of feeling weak in the legs, spaced out and not with it. Heart palps and feeling so tired I just want to literally fall asleep. The worst sensation is this tingling throughout my body and like you decribe I feel poisoned. 

    Doctor has tested tsh a few month ago and says it's normal.  It's 2.4mu/L 

    I believe I'am feeling like this because of my thyroid medication but have no proof. I work five days a week like most, but feel on and off so tired I just can't function normally.

    He won't allow me to have t4 or t3 tested which is frustrating.

    I'am eating healthy, taking b complex with magnesium and iron.

    Any thoughts. 

  • A TSH of 2.4 isn't normal. Someone on thyroid hormone replacement should have a TSH of one or Under. Your doctor is ignorant. :(

  • 2.4 isn't optimal but is in range I believe? 

  • Typically when you're replacing hormones that TSH stimulates, then TSH should basically be very low, like under one, like Greygoose said.  

    Our symptoms should also be part of the equation.   It's up to them to analyze results in comparison to symptoms and they obviously don't want to hurt their brain or think too much if they're not doing this.  Some do though. They want to help. If yours doesn't, find someone else. 

  • I had exactly these effects while sick.  I had a full-blown celiac-enteropathy-hashimotos-hypothyroid-hypoadrenal-hypoprotein syndrome.  First, 200mcg T4 sounds like way too much.  Second, I suspect you could have gut damage and that your adrenals are way out of whack.  Are you able to get testing for food sensitivities (esp gluten), nutritional deficiencies, and proper adrenal level/rhythm?

  • How  did you get yourself sorted? 

  • Trial-and-error for 9 years after getting off gluten.  Docs don't know squat.  Went on T3-only for a while, which worked well and does not cause the terrible anxiety which T4-only causes for me.  Tried different combinations of supplements and meds like LDN.  Went on low-dose hydrocortisone for a little over a year to try to get adrenals to behave.  In addition to getting back on T3+T4 at the dosage 15+75, finally discovered from a metabolic panel that celiac gut damage ("leaky gut") had caused chronic hypoproteinemia; using free amino acids fixed that.  Also use DHEA to help counteract the negative effects of cortisol.

  • I've had the exact same problem as you. I was on levo and, over 3.5 years, it made my body toxic to the point where I had to come off it and then, like you, I could no longer even tolerate small doses. I have been off medication for more than two years now and am only just again starting to retake and tolerate small amounts. I can't take levo at all, I have to take ndt. If I try and take levo, my body starts going into a crisis within seconds. The problem is that the body becomes overreactive and starts overreacting to everything.  I tried fixing adrenals, detoxing the liver, etc. I also tried T3 but it didn't help. Nothing helped, just confused my body even more.  

    I put the recent improvements down to tai chi practice, meditation and other energy building and balancing exercises. In my case, that's the only thing that has helped. 

  • I would love to come off for 2 years but that would have to be a god thing! 

  • Lol....I didn't have a choice!

  • My tsh after 5 weeks off it was 111.8 I'm not sure my body would let me too I can't imagine what my body would do after 2 years but I would love if my body would do it 

  • The problem is, if your body is rejecting drugs, then forcing hormones into it will make the sensitivity worse. This was my experience anyway and why I had to stop. Of course, we are all different and I hope that you will be able to get back on meds sonner than I have. 

  • Can I ask what your tsh got too? While you were off the medication ? 

  • Personally, I think that symptoms and t4/t3 are more important than tsh. My tsh had never been high - it was 9.5 at the highest and 4.5 at the lowest. But my hormone levels have always been at the bottom of the range and I am highly symptomatic. 

  • I have had a similar experience after 12years on Levothyroxine . I went gluten free to try to help my IBS and found I was very sensitive to Levo.  with palpitations and tingling in fingers.  Dr. P told me I was T4 toxic and within 10 days of cutting out the T4 my diarrhoea had cleared up and I have had 5 months free of IBS.

    Trouble was that TSH went up to 44 so went to see new Endo.  because Dr. P was ill.  He put me on T4/T3 combination 25mcg/20mcg. but still had pounding heart, racing pulse and high BP so now have started on T3 only.  15mcg split dose, few days ago. So far feel better, pounding and anxiety has stopped.

    Have started to eat gluten again as tested neg. for coeliac but it does seem to affect my symptoms so may go GF again when I feel more stable.

  • How long have you been on t3 only? R u feeling ok, what dose are you at? 

  • Have been on T3 only for 10 days. 

     Started ok on 15mcg but still had odd anxiety attacks so bought "recovering with T3"  by Paul Robinson and he said if you are changing from a combination dose to T3 to start on as small a dose as possible until all the T4 had gone from your system, so I cut down to 5mcg twice a day.  

    Trouble is that my TSH was 28 and I then thought maybe I was getting hypo symptoms!!   I am now trying  to build up my dose gradually to 15mcg a day and see how I do on that but I want to get rid of all the T4 in my system because I feel sure I will get rid of palpitations etc.  Best I have felt was when Dr. P I initially told me to stop the T4 temporarily as he thought it was making me toxic, but of course you can't keep off some form of thyroxine without suffering.

    My endo. is happy to prescribe T3 alone and GP will prescribe it but he will not

    give me NDT.

    Good luck, let me know how you do.

  • How are you now on t3 only, I'm

    Still unable to tolerate meds 

  • Am  now taking 7.25 mcg at 6am,   5mcg at 11.30 and 5mcg at 4pm.  Feeling good , and energetic apart from some feelings of irregular heart beat after food, which I think is because I am still on a very low dose and probably still hypo.  Can't believe I am taking too much.

    Am planning to increase to 10mcg, 5 mcg and 5mcg. in a weeks time as endo. suggested I get to 20mcg by beginning of July when I am due to see him again.   Having bloods done before I see him.

    Found Paul Robinson's book very useful.

    How are you doing?

  • I think I have gone up way too fast I'm 30 am, 10 mid morning and 10 mid afternoon, extremely unwell on it and just had my bloods done and hypo 

  • Perhaps you should cut right down, but it seems to take a while to get used to a different dose.  Are your T3 levels within range?

    Good luck

  • How are you managing on T3 now?

    I recently upped mine and was trying to take 12.5 at 7am and 10 at 3pm but got strange feelings at around 10.30 so will go back to 3 times a day and see if that helps.

  • 1, have T4,  TSH, T3 and reverse T3 tested..... if this doesn't demonstrate the problem, coordinating with very holistic medico well versed in thyroid interpretation...not one who believes reverse T3 unnecessary!,,,then

    2. compounding chemist  (might need to be in conjunctin with an allergist) to check if you have developed an allergy to filler in your tablets (sounds like it)

    I'd do both at the same time

  • So sorry to hear that you are still suffering so badly. The only common thread that seems to raise its ugly head in all those who have similar problems is that whatever change is made in any treatment is that this has to be done very gradually. I am certainly no expert and don't have any medical knowledge but have taken note of what many thyroid suffers have said on this site for quite a few years and that point seems to have stuck in my mind. My endo who helped me in the recent past has had the audacity to retire! Just my luck!! However the new one seems to be working to the same protocol so I am hoping he may have something of use to suggest next week. If there are any pointers he makes of a general nature I will pass them on to you. If you just need to get anything off your chest and want a sympathetic ear, by all means message me. Don't give up!! About 4 years ago I was in a similar situation so I do understand. I must admit though, my batteries got something of a boost when at the age of 74 and 75 my husband and I became grandparents for the first time to a wonderful little girl and I am sure that she has helped both of us during our health problems because we have both been determined not to miss out on the joy she has brought to our family - one we never thought we would experience since both our children have the suffered the heartbreak of failed attempts at IVF. We now try and think that one couple has been lucky so why not the other. Miracles can happen! Try and keep your spirits up.... it may be your turn to have a change of luck - lets hope so. My very best wishes .... love Flo xx

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