So i have an endo appointment on thursday and need help in what to say to try and be given t3, iv been on levo 9 years and was ok for 9 years but then my brand was changed to teva new formula and my body just doesnt seem to tolerate it anymore, i get breathlessness chest pains limb pains and severe erratic moods anxiety and depression on and off weird pains i head, feel like im going crazy weirdness in head... iv tried all brands and the best of the bunch is mercurypharma that i am taking now, but cant go higher than 75mcg or side effects are 10 times worse just cant get my levels stable anymore...
I even gave the actavis brand 6 months to see if the side effects wore off but they never did it was horrible..
My vitamins are all high in range i doubled my b12 and iron since taking b12 lozenges and since eating liver once a week..
These are my thyroid results starting from 2014
26/2/14 - ft4 - 20.8 (9 -19.1) TSH 0.36 (0.35-4.94) no ft3 tested on 100mcg not sure of brand.
16/1/16 ft4 - 23.9 (12- 22) TSH 0.85 (0.27- 4.2) no ft3 tested on 100mcg not sure of brand.
31/8/16 ft4 21.8 (11-23) TSH 10.5 (0.27- 4.5) No ft3 tested on 100mcg not sure of brand
9/1/17 ft4 24.4 (11-23) TSH 8.1 (0.27- 4.5) no ft3 tested been on 100mcg of teva new formula for 3 months herendous side effects.
stopped teva levo altogether as could not cope with side effects, ended up in A&E with side effects...the following results are with 2 weeks no levo..
Before you changed to TEVA Levothyroxine you were undermedicated. Changing Levothyroxine may have destabilised you or it may be because you were undermedicated that you started getting symptoms and felt so unwell.
24/2/17 when you stopped taking Levothyroxine your FT3 plummeted making you really unwell because what you really needed to do was increase your medication. All these changes in the wrong direction are making you very unwell.
31/8/17 on Actavis 100mcg it looks like things were beginning to settle although it would have taken another 3 or 4 months to adjust and start feeling well (As you've got thyroid antibodies, or Hashimotos, your antibodies are likely causing fluctuations and some of the symptoms). At this point you increased to 125mcg of Actavis and it was too much as FT4 went very over range so I think you should have simply reduced back to 100mcg and let things settle down and retest in 6 weeks but without making changes.
It seems like your body went into shock without Levothyroxine for a few weeks and now it's struggling to adjust to lots of changes.
Now you're on Mercury Pharma I would stick to it, increase by 25mcg and retest in 6 weeks although you won't feel well as you'll still be underdosed but see if your antibodies settle down. Introducing T3 at this stage is yet another change to adjust to. If things have stabilised a bit in 6 to 12 weeks it'll be easier to decide what to do next.
Thanks for your reply however i would have to disagree with what your thoughts are, sorry if i sound rude, but i have been through hell and back and really believe over the years i have become intolerant to levo maybe because they have changed how there made or maybe my body has changed, all i know is the more i am on the worse i am..
Also the constant high ft4 (except for when not taking it) only suggests to me that im not converting very well too..
Well, I'm no expert, only a fellow patient who went through 10 years of hell due to problems with levo and had to figure out how to get and stay well and now fine.
Wishing you the best of luck and hope you're better soon.
for me the key is sticking rigidly to one formulation of levothyroxine and carefully adjusting the dose then sticking with it. My TSH is usually suppressed. I never adjust by more than 12.5mcg or it makes me ill. I've cut out anything that affects levothyroxine's efficacy.
I keep vitamin levels optimal, cut out refined carbs and addressed low stomach acid with organic apple cider vinegar and now eat natural yoghurt daily. Recently I've included a careful exercise programme.
It's taken years to find and maintain stability (mainly, I think, due to the problems with levothyroxine manufacture prior to 2015). I find a very, very tiny change of levo makes a huge difference. More than a 12.5mcg change triggers side effects.
The last 2 years have been a lot better as I've learned to stick rigidly to what suits me.
I'm hypothyroid but don't have Hashimotos so my experience may be different from other people's.
I had terrible problems with TEVA and it took years to recover from the impact of poor quality levothyroxine. It sends you crazy and it's a horrible experience so you have my sympathies.
Thanks for your detailed reply i really appreciate it... i have been hypothyroid for 9 years and always been ok never noticed any side effects once taking levo and never checked the brand i was on so they probably changed alot through the years but i never noticed, and never really noticed symptoms of being hypo alot, i only went to see my doctor as i was falling asleep really early at night and i was only 25 so thought doctor would just say im aneamic but she said i had an underactive thyroid and i would be on medication for the rest of my life and that was it left me to it... 9 years later here i am wondering now what has happened to me, all i know is i started with severe anxiety and depression and literally felt i was going crazy when i was given the teva (new formula) brand, ended up in a&e then stopped them and felt normal again but my body obviously needed levo as tsh shot over 100.. then went on actavis brand which again did crazy things to my brain gave it 6 months to no avail.. to where i am now on mercurypharma basically the best og a bad bunch...
No im trying to figure out if the lrvo has changed so much over the years my body no longer tolerates it or that my body has changed also? Or the fact i now need t3 as im not converting as well as i used to? The higher i go on levo the worse i am?.. should i try the liquid version?
All my vitamins are now fine...
Can i ask what brand u are on and do u also take t3?..
And do u suffer more mentally or physically? Mine is mentally ..
I am surprised that you weren't offered a hypoallergenic version of T4 so that you could decide whether it was the T4 itself or the fillers although it might be both. And yes I think the logical step is a version of alternatives with minimal fillers. I fought my GPs for the hypoallergenic version as felt so poor on T4 and had massive gut issues so eating a very small number of foods. My surgery wouldn't support me or refer so I am now on WP dissicated thyroid. And as above you doses to date haven't supported your health. Good luck.
ThyroidObsessed The symptoms I experienced with TEVA sound exactly like yours, I ended up in A&E a couple of times too. Once you've run into problems like that it takes a long time to recover. Ending up in A&E and not understanding what is happening is very frightening. The problem doesn't show up in blood test results and so doctors just say you are alright when you're clearly not which makes it 10 times worse.
The MHRA are the regulators of human medicines in this country but I honestly don't think they understand the profound problems caused by substandard levothyroxine. I'm not convinced their scientists understand much about the hormone either as they had the drug wrongly classified.
There's probably some adverse effect on the neurons in your brain when your body does not absorb a particular formulation of levothyroxine. That's not going to show up in blood tests! Except that TEVA did not maintain my TSH level.
There is hardly any research on why some levothyroxines are unsuitable for some people and why they are not interchangeable for quite a few people.
TEVA is supposedly fine now as the MHRA has licenced the current formulation but any drug can have severe side effects. It isn't just what's in the tablet that makes a difference, it's also the manufacturing process and the solvents, or carriers used to convey the active ingredient into the fillers. If the molecule size or proportion varies, it can adversly affect absorption. The patient information leaflet doesn't have to carry this information because the solvents dissolve and are not present in the final product. However, I read it can affect it's bioavailability. I wish I could locate where I read the information, I think it was a New Zealand report but it doesn't seem to be available on the internet now.
So you see, the production of levothyroxine is very challenging for manufacturers and it's not as simple as doctors, pharmacists, the NHS and even Endocrinologists think. This is a complex hormone to produce and deliver effectively. NDT might be a better choice since the hormone does not have to be conveyed into the excipients with solvents but I can't say. I can't recommend it from personal experience as I don't take it or T3.
I think I had a serious adverse drug reaction and it took a long time to recover. I wonder if that's what's happened to you? I've found Actavis suits me and Mercury Pharma was not too bad, but we're all different. Perhaps your body (and you) have had a terrible shock? Are you on any other meds to deal with the side effects of inadequate levothyroxine because if so those could be giving you side effects too and it becomes a vicious cycle.
You could be right im just not sure anymore, think i have looked too much into it and now have brain overload lol.... did u see an endo about it? im under an endo at the moment whilst they try to stabalise me... do u think i should ask for the liquid version as i do suffer with ibs gut issues?... or should i ask for t3 as my t3 seems low even when t4 is really high?...
I gave actavis 6 months and the side effects never wore off, i know it was them for a fact as im much better on mercurypharma although not 100% yet as im having breathlessness which is probably because im only on 75mcg and im undermedicated maybe?
And no im not on any other medication at all i even stopped my contraceptive pill over a year ago as i thought maybe that interacts with levo?
i eat liver once a week for my iron and i take 1000mcg of the jarrods b12 lozenges.. nothing more, as my vitamin d is at 100..
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Suppressed TSH - thoughts? 
Latest Medichecks Results - low FT3 - Dr will refer me to NHS Endo, should I try? Do I need to up my Levo in the meantime?
