Eltroxin makes me feel terrible

Hi all, new to this forum so firstly hello! I've been prescribed Eltroxin after a rollercoaster ride which has encompassed a Cushings diagnosis(now Dr says that was a mistake - I just have v high cortisol that won't supress), b12 and vitamin d deficiency diagnosis (currently on supplements), panic disporder (diazepam, antidepressants and psychiatric consultation). Finally I'm here with a hypothyroid diagnosis. TSH 8.9, T4 19, T3 5.6. dHEA 1.8. Having done a bit of research I asked my consultant about natural thyroid or T3 and he said he would not prescribe under any circumstances. So I now have a box of eltroxin and I feel terrible. I've been taking it for 3 weeks at 50 mcg with instructions to move up skiely until i was on 100. After a week I started to have palpitations, insomnia, feeling on edge and ready to snap and totally lost my appetite but also absolutely no energy to get out of bed. I've dropped down to 25 mcg after reading that some people need to titrate up and still I feel terrible. Exhausted and horrid. Am I allergic to Eltroxin? Do I just need to give it more time? Should I start taking more? Or stop it completely? My GP says he doesn't know and that I need to wait for my consultant app in 4 months! Please help - I feel awful!

15 Replies

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  • Hi jo01 - welcome to the site :) Sorry to hear how ill you have been feeling. Do you by any chance have the ranges for your T3 and T4 as these vary by lab and it is difficult to comment further without those?

    I too felt awful when I started on 50mcg of thyroxine - it made all of my symptoms (including anxiety and panic attacks) initially worse for a couple of weeks before I gradually began to feel a bit better.

    Unfortunately I wasn't one of the majority who do well on thyroxine but am feeling so much better on Natural Dessicated Thryoid. Again it was very difficult to start with and each increase has been tricky but I am glad that I persisted. Unfortunately, however, most doctors won't prescribe it although there are a few who do. Lots more endos though will prescribe T3 so you may need to ask for a referral to another endo if you want to try this.

    Personally I would try and persist with the thryoxine for a bit longer first. You could even try 25mcg every other day. It would be good to see the ranges for your results though. xx

  • Thanks so much for your swift reply Clarebear. By 'ranges' I assume you mean the ones on my test results? Ie my TSH range says 0.8 - 5? In that case I only have the TSH one but I can certainly get the others when I'm back at house. My endo is adamant he won't prescribe T3 even though mine does "appear lowish" He says he has two patients who have gone against his advice and get it off the Internet and I would need to do that. Im happy to try Eltroxin only first. I'm just worried it's making me feel so awful. Is it normal to feel snappy and crappy in the first few weeks - even at such a low dose? I gues I'm wondering whether to just stop completely or fight through this and try to get up to a hundred mcg as my endo wants? (he said to go up by 25 mg a day) I'm worried my head might explode if I do that! His secretary says I can't possibly see or speak to him until my appointment and my GP (phone consult this morning) literally says ' I don't know'. Thinking of trying to get appointment quickly with Dr Skinner who seems to come so highly recommended. What a great site by way. So glad I found it.

  • Hi again - yes those are the ranges and they need to come from your own results as they vary by lab - hopefully your GP surgery will have these.

    I found that when I took thyroxine that my FT4 went right up but my FT3 actually went down - so managed to convince my endo that I had a conversion problem. He had never prescribed NDT before but agreed to "supervise" me on a trial rather than me order if from the internet - I am surprised your endo would prefer you to do this especially as T3 is a licenced medication which many endos and some GPs are happy to prescribe. Not so surprised about the NDT though :(

    Dr S sounds great although I haven't seen him myself (but I have read his book). I thnk he tends to go down the thyroxine route first too and believes that most patients will be fine on it when they reach a sufficient dose. If this doesn't work (or the patient doesn't want to do this) then he will prescribe T3 and/or NDT. You would need to get a referral from your GP but I think he can usually see patients within a couple of weeks.

    How is your iron/ferritin as that can effect how well you are able to tolerate any thyroid meds? I see you have already been tested for vitamin D and B12. Low cortisol is often a problem too but I see you have high cortisol - how are they dealing with that?xx

  • I did think - and say - that I thought it very odd to advise me to buy from the Internet. Bit of background. My cortisol was extremely high. First tested by GP when after 2 years of feeling more and more rubbish I still refused to accept antidepressants for 'anxiety'. I'd gone from running triathlon and busy happy life to feeling ill all the time. Finally did some further tests on my request and send me straight to endo who hospitalised me! I was there for 12 days for all sorts of saliva tesrs, supression tests, scans. My cortisol was 24 times higher than it should be and didnt supress so they diagnosed cushings and a thyroid nodule and told me I was seriously ill. Another consultant then saw me as i was unusual case and said no that's rubbish. You don't 'look' Cushings so you haven't got it despite your results. He prescribed Vit B injections Every two months (level was 22) and D (level was 7) and to stop eating so much (cheek!). The vitamins definitely stopped me fainting but still felt crappy. 3 months later he said on reflection I should take thyroxine as I had a TSH of 7.7 and he would see me in 6 months. The cortisol - the one that was so high they hospitalised me was 'probably stress and not worth testing again'. Having done some reading i asked about NDT and T3. And was told categorically no. So here I am with my thyroxine (eltroxin) and I feel horrid. My GP is lovely but won't do anything and his answer to everything is 'I don't know - that's for the specialist'. This whole palava is slowly killing me. Feel like I'm losing my mind! Feels very nice to write it down though so thank you!

  • Oh all my iron counts were fairly low but not low enough to supplement. Again I haven't got the ranges in front of me but will get hold of them.

  • If they are fairly low then they are low enough to supplement, just not low enough for the NHS to actually spend any money on you unfortunately. In fact your lowish iron could be contributing to your problems. If your iron, B12 and folate are low, your cells have trouble using the thyroid hormones and they build up in your blood. This may be part of the reason why you are reacting so badly to the Eltroxin.

    If I were you, I would start supplementing with iron and hopefully that will make a difference.

    Carolyn x

  • Probably all your clinical symptoms above actual stemmed from a failing thyroid gland.

    I was similar to you in that I couldn't believe a synthetic hormone could make you feel worse than before you were diagnosed. Some people are poor converters and sometimes it is the fillers/binders in the meds.

    You may be feeling worse at the moment if your TSH is at the level stated above as it is high.

    You have to now read and learn as much as you can about hypothyroidism and there is lots of info on the main site, Thyroiduk.org. The tests Clarebear suggests are good and hopefully your GP will do them. Are you taking anti-depressents at the moment as I believe they can affect the uptake of thyroid hormone (someone will correct if I am wrong).

    Dr S does go down the levothyroxine route inititally, as most doctors prescribe too low a dose to make people well and insist on keeping them within the 'normal' range but there is really no such thing as people vary in their needs and the amount needed to make them well. It is easier too for doctor's to prescribe when you get to the optimum amount.

    My Endo did allow me to have some T3 added to a reduced T4 and it did improve my wellbeing but I have now changed to a NDT and had to go private. I tried a few before I found one that suited.

    P.S when you reply to a particular comment you should press the blue Reply to this button and another box opens and the person is notified, otherwise you may wonder why you have been ignored.

  • I am afraid I don't know too much about high cortisol (mine was low) but it sounds as though they should be doing something about it :D

    Your B12 and D were very low so glad you are having these treated. Low ferritin/iron though could still be a problme. Ideally ferritin should be 70-90 when you have a thyroid problem but most doctors/endos don't seem to know this, so although you may be just about in range I would think iron supplementation would be sensible too but please post the results when you get hold of them.

    Thyroid UK has a list of sympathetic doctors which you could send for (link follows) but Dr S I think would be a good choice.

    thyroiduk.org.uk/tuk/diagno...

    I too felt really ill before getting the right treatment but now I am feeling so much better - hopefully this will be the case for you soon too :) xx

  • Thanks for your replies. So much to learn and it's not the simplest thing to understand. I'm going to gave a good read of the site and try to learn a bit more. I think my vague-ish, thyroid-ish but maybe not-ish diagnosis doesnt help. Going to stick out the Eltroxin for another week and try to stay sane and get some sleep. I'll be back soon with more questions no doubt!

  • Hi JoO1, I was on levo (T4) but am highly intolerant to it. Took myself off it twice and then finally, for the third time for good. However prior to this, the brand was changed to eltroxin. Not a scare monger but I feel you need to know --- on top of the thirty odd previous side effects -- with this breasts doubled their size, they became very sore & tender (thus that is still the case) , began to itch dreadfully (scratched so much made myself bleed often at night), the BO returned and I had the aroma of sour milk?. It was after enduring all this for several months iI thought enough is enough & I told the GP & the endo that Ild NEVER take T4 again. Now on quarter of 25mg T3 and no way can this dose be increased.

    Sorry but felt it was important as it may also apply to others. Feel badly for your suffering.

  • Sorry forgot to hit reply to this. Answer below.

  • Oh crikey this sounds very familiar. I woke up this morning scratched to bits. No breast increase but I do feel grubby and sweaty and just horrid. I tried taking my tablets last night after reading that this could help with the awful palpitations and anxiety. It worked - I was knocked out for 15 hours and couldn't get out of bed. On top of this I've lost 5 pounds overnight. Not necessarily a terrible thing for me but surely that can't be healthy? I Jay dint know what to do.

  • Yes sweating and flushing was one of the main side effects. Occasionally had to have several showers a day. As soon as had one the "sessions" felt really dirty again. Palpitations got so bad, went to GP & requested lung capacity check (breathing laboured) O2 in blood level checked & heart rate. All excellent but I was frightened. What tablets did you take to make you sleep so soundly?

  • I took my Eltroxin tablets last night before bed - just 25mcg and within hour couldn't keep my eyes open. I've had terrible insomnia since all this started so I thought great. Slept like the dead although I had crazy dreams all night. But then i literally could not get myself out of bed. Today I've felt truly dreadful - sck, spaced out, lightheaded. I went to lie down at nineish because I thought I was going to faint. Arms and legs tingly and heart pounding. I'm not sure what happened. I couldnt keep my eyes open again but also it felt quite frightening. Almost like I was drifting in and out of consciousness. I'm not taking another eltroxin tablet. They've scared the life out of me. I'm on holiday unbelievably - thi I've spent it in bed! I'm calling my GP in morning.

  • Hi all, an update and another question.... So, I went to the emergency doctor here at my parents. She substituted the Eltroxin to the actavis generic Levothyroxine. I've been taking it now for 9 days. And I feel gross. If I take it in the morning I am a zombie and can't keep my eyes open. If I take it at bedtime I have really disturbing vivid dreams all night about friends and family and dont get any actual sleep. Either way I am finding it impossible to get out of bed before lunchtime ( I'm on annual having a GREAT time!). I'm now on the 100 dose my Endo wants me on. Appointment booked with a private nutritionalist - not sure I'm allowed to name him - for the 24th when I'm back in England. My question is - is this utter exhaustion, spaced out-ness, insomnia hell due to the Levo? Oh and my hair seems to have thinned dramatically in space of 2 weeks. Should I start feeling better? I feel so confused as to whether to just stop taking it. It feels like it's poisoning me..

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