What the hell is wrong with me! You've probably seen my other posts where I can't tolerate Levothryxine tablets. I get severe migranes, that they end up vestibular I.e dizizness veritgo balance problems blurry vision and my eardrum gets damaged. Every damm time. I've been off medication for 3 weeks (endo told me to) and my ear is 80% healed even though i have damage to it for being on levo for 4 weeks and ending up in a and e. I picked up my new prescription today..been feeling great for 3 weeks (levo liquid 50mcg once a day) and had it once!! obviously this was made for me especially so it has all hormone with only a couple of things on it and im now feeling the migrane coming already!! And had two episodes where ive felt funny with my head. It normally takes 7 days to come out so I'm now guessing it wasnt the fillers.. it was the hormone all along and my body is not reacting to it well!! I've tried cutting the hormone down and increased it. tried every other day etc and I always end up with a damaged ear. What the hell is going on!! People and my endo are thinking im insane! I can't handle feeling like that again.. I've got 2 young kids and I work.. I had 3 weeks of work as my ear was so bad i ended up with labrythitus and my eardrum swelled up and went horizontal but even ent said he shouldn't think the hormone or even the fillers should make me like this. It defintly isnt a couisdesnce as I've now tried for 5 years.. and i can never get past a certain amount of days as i cant even lift my head up! Why is hormones doing this to me?
I'm giving up!: What the hell is wrong with me... - Thyroid UK
I'm giving up!
I don't know if this helps but when I first had my thyroid removed due to cancer, after about three months (on T3) I was put on Levothyroxine (because it was said to be better - it was not) but it wan't too bad and I remained on Levo for about 4 years. Then that brand lost their contract to manufacture and I had to go on a different brand. I never did find a new brand of Levo that I could take - and I tried them all, from cheap to expensive, not one suited me. Maybe that is your problem, there is not a brand that you can tolerate. I went round doctors' offices until I found one who would prescribe NDT (my last desperate idea). Now I know this is difficult in the UK but you have to get it off the internet. I do not know where the locations are these days, but they are around and others can PM you with suppliers.
Now, how it is affecting your ears is a bit of a mystery. I used to have tinitus until I got on the right dose (of both Levo and NDT). It is my theory that blood pressure has something to do with it. I cannot tell you whether it is blood pressure that is too high or too low, all I can tell you is that when I was on the right dose of medication, it went silent. I believe it has something to do with the generation of T3 (which in turn can raise your BP). If you are susceptible to this it is a delicate balance to get as much T3 as you need to feel well thyroid-wise but not so much as to send your BP up.
Don't give up CarlyLouise, many of us here (me included) have been at the bottom of the barrel of hope. Just keep plugging away and trying things. It's a long frustrating fiddle and it drives you crazy many times and it took me two years to get it right. Hang in there.
Hi ,I was on levo for 2 years and it was a horrible time.feeling like crap all the time and not a glimmer of getting better.so after reading on here and other articles elsewhere I decided to try thyroid s.i not saying I am 100% but I am feeling so much better that I would not want levo again.maybe have a chat with drs and possibly give it a try.
Hope everything works out ok for you.
Could you try splitting your Levothyroxine liquid dose in two. Take 25 then a few hours later another 25. That’s what I do as I have issues when taking my Levothyroxine. I’m also on the liquid now. I find it much better.
I take 2.5 in morning. I can ask my endo if that will help but it seems like any amount of hormone going in me makes me very unwell x
very strange
Why not try a doctor who will prescribe NDT or even T3 only if reverse T3 a problem?
I've tried t3.. for 3 days.. with proproponal.. and ended up in a and e with chest pains and was told to come off them x
Try it without the proproponal.
Just a thought, do you know if you have any cortisol/adrenal issues? I've just started T3 and I've seen that my cortisol levels have gone down. So I need to investigate what's happening. I've noticed that any changes to hormones gives me vertigo, including cortisol. Maybe this is something that's complicating things for you too
they done a cortisol level test last week at 2pm and said it was fine . not heard nothing else.
it's not just veritgo I get.. it's a severe migrane where i cant tolerate light or sound.. veritgo. dizziness 24.7.. blurry vision... it's so scary. I get a inner ear infection too 
every damm time.. it takes weeks to get better. I can't live like it anymore x
Poor you The cortisol blood test should be done at 9am, not at 2pm.
Cortisol levels are highest in the mornings before 9am and then drop off throughout the day. That's why the cortisol blood test should be done at 9am.
What I mean to say is this. You need both T3 and cortisol to make energy in our cells. When you go on thyroid medication, it should increase the T3 available. If your adrenals are not coping, for whatever reason, then you might be experiencing symptoms from that
so what would u advise me to do??
Are you in the UK? I'd do (and have just done myself) a 24hr saliva cortisol test that also includes DHEA. You can get this through Regenerus. I think it's called the adrenal function test.
Or at least ask your endo to do a 9am cortisol blood test. That would give you an idea.
thank you I will have a look.
I've just looked at it! I'm in the UK yes. what's DHEA? also just looked at it.. is it literally salvia? or do you have to spit in it or something?
DHEA is a hormone that the adrenal gland produces. It turns into estrogen or testosterone. As it also comes from the adrenal gland it can give an indication of how your adrenals are doing.
It's a saliva test. You'll get 4 little tube things to fill. It's quite easy. I found filling out the forms the hardest bit. You have to freeze the tube things as you fill them. Then send back with a frozen freezer pack thing. They processed mine in a week
If you haven't tried NDT, that's probably worth a go
It works differently to synthetic Levo and T3
You may need to support adrenals first
Have you had adrenal saliva stress test?
Regenerus do 4 point saliva testing including DHEA
would that be the best way to go ahead? I've asked my endo if i purchased ndt would she help me..
she done a cortisol level at 2pm and that come back ok x
That was NHS blood cortisol test I assume
Saliva adrenal test will show if diurnal cycle is off. Cortisol should be highest early morning and drop through day
NHS testing doesn't show whole picture
Regenerus test
regeneruslabs.com/products/...
Example of test result
cdn.shopify.com/s/files/1/0...
thank you. gonna order one. Is it literally salvia? do you spit in the tubes or something? how you meant to get it 3/4 full if you dont spit haha x
Yes it's a spit test
Very Long time since I have done one
SeasideSusie probably has more recent info
Yes, it's saliva. You don't actually "spit" into a tube, you collect saliva using a short straw, which they provide, to move it from your mouth into the tube.
Full instructions here: cdn.shopify.com/s/files/1/0...
Order with ThyroidUK as your "practioner", details here: thyroiduk.org/tuk/testing/r...
Interesting fact. In the US (and via True Health Labs) you spit into the tubes and at some point you can't get any more saliva into the tube because it hangs around the top opening, so you put it in the freezer for an hour or two to get it to sink to the bottom. And now I feel sick thinking about that!
@carlylouise dont give up, I was put on levo in 2017 after a year and a 1/2 of dose gradually increasing to 75 mcg as I started to feel better I started to feel worse. According to the Endos lab report said I was fine and my numbers were great. I was not fine I was sweating profusely at a lot with every move I made it made me depressed and kept me from doing anything. I left that Endo and found another dr, who prescribed the NDT Amour Thyroid. I felt much better and had to start from scratch with 30 mcg, of compound Amour thyroid. Now I am on 45 mcg and I am experiencing rapid heart beats, I also have high levels of cortisol at night and find I can’t do much without my bpm going up. My dr referred me to a cardiologist because she does not feel its the meds. My cardiologist is putting me on a heart monitor for a month, and will do an echocardiogram after that. I explained my symptoms, insomnia, rapid heart beats, palpitations, waking up in the middle of the night with racing heart. He said my symptoms sound like I have Atril Fib, which Occurs on some patients on Thyroid medications as it speeds up your metabolism. So here I am in the wait game we are as good as the last thing we do so don’t give up! I will do the monitor but will continue learning ways I can get better. There are people here who are fantastic and have an abundance of knowledge and experience, and they will set you on the right course. It is up to you to read the articles and do the research as doctors still don’t understand thyroid disease. I am sharing my story so you can see you are not alone. Many here have helped me and I am grateful to all of them! Hang in there. People who speak on what they have experienced. They are not Doctors but share true knowledge and experience on dealing with Thyroid disease and many other things! 🙂
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