I joined this group to try and find out if anyone else has suffered the deafness /fullness of the ears /tinnitus and vertigo I have for the last 18 years.
To cut a long story short I have diligently prosecuted a strategy with the help and support of several members and admins, getting all the right tests done, changing and stopping medications, vitamin supplements diet and lifestyle changes.. You name it, I've changed it, optimised and studied.
It came down to :
1. Levothyroxine is poisoning me
2.I am not converting T3 /have a T3 shortage.
Medichecks confirmed my T3 levels to be rather good... So... THYROID S it was... Not that this came from the NHS!
1 week after stopping levothyroxine, I am hearing almost perfectly. No joking. I am still hearing a bit of tinnitus but 80%less. I can't believe the difference. In effect I have my life back.
I was wearing hearing aids, getting vestibular migraine, with dizziness, vomiting, raging tinnitus and head rushes. All gone on NDT.
I just want to say a massive thank you to all of you who have helped me with my million questions, giving advice, contacts and support when I was going insane.
If anyone is struggling in the ways I have been it might be worth having a think about levothyroxine... Clearly it does not suit everyone, but your GP doesn't have anything else to offer... Scary. I suffered so much because of this, hardly believing that the medical profession would prescribe me something that would make me ill. Well.. They did and I have proved this through a painstaking and on going process of illinination and experimentation. I would never have been able to do this without the help of this forum.... I just hope that this can give hope to anyone going through similar stress. Levothyroxine.. You suck
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What a great post, lovely to hear a success story. I'm so pleased you have found what works for you and have had such great improvement. Long may it continue.
Why, oh why, is the medical profession so blinkered, why can't they realise that one size doesn't fit all. I wonder if they ever stop to think about other things that don't suit people - some people can't take simple aspirin because it causes them awful side effects. My father-in-law ended up in hospital because he was vomiting blood badly, turned out to be the low dose aspirin he was taking to "prevent strokes". So something if something as simple as that can have devastating effects, why can't doctors realise that other things can too.
Unfortunately we are programmed from birth to blindly accept "authority" in the form of people in white coat uniforms.. And it comes as shock to find out that they in fact know very little... And yet entrench themselves in their opinions, because its more important to them to maintain their "authority" than it is for them to admit ignorance.
When I come down off this high I might find time to get angry, but for now, I'm just too happy hearing the world again!
Hello It is great to hear your story thank you for sharing. If it helps id like to share my story with you in the hope that it helps you. I am Hashi and have been for a number of years, I am currently taking 75mg Levo and this has as usual slowly increased over these years and I am actively working toward better numbers on my blood test with vitamins and diet changes. HOWEVER 6 months in to being diagnosed I was also diagnosed with Menieres disease (auto immune) that causes the following; fluctuating hearing loss, tinnitus, fullness in the ear, vertigo, sickness, balance failure and fatigue plus a few other nasty things. I have Menderes in my left ear but it can be bilateral also. In the last 10 months I have been on a long and testing journey to get this nasty condition in control and thankfully I have managed this with, Low salt diet, no caffeine, no chocolate and no gluten plus Diuretics and betahistimine and steroid injections in to my affected ear. Today I am stable and almost back to the normal me including my hearing. The big thing is that I am still taking levo daily. feel free to contact wanted to share xx
Hi there and thanks for your story, which is very familiar. (This has gone on a bit! sorry )
I am an expert on Menier's disease, as this was what the doctors were trying to pin on me for the 1st 10 years of this nightmare, resulting in thousands of pounds worth of ENT and neurological consultants, brain scans, tests... you name it I had it. NO ONE chose to notice that these Menier's-like symptoms started at exactly the time I started on Levothyroxine at 125mcg daily.
I had terrible attacks and these have morphed over the years into a variety of versions of deafness, vertigo etc, BUT I never got an official diagnosis of Menier's, because the symptoms kept shifting.
I was investigated for vestibular migraine, which as it happens I believe I do suffer from, but I only have attacks because Levothyroxine is an antagonist for this condition. I also suffer from tinnitus, I believe as a separate issue, but again, Levo has antagonised this over the years and caused it be worse due to the deafness caused by the drugs.
I have been on a low salt diet for years, gluten free, soya free, dairy free - I am also extremely active and very fit for my age.
The only thing that has made a dramatic difference to my health has been to come off Levo entirely and replace it with NDT.
Whilst this is still early days, I have suspected this to have been the villain in the piece for a number of years, but had no idea about alternatives, until desperation drove me here and I started this process of enlightenment and discovery. I remain convinced that Levo has a LOT to answer for.
Remember this: A diagnosis of Menier's is a very hard thing to guarantee. Doctors know very little about this condition and even less about curing it. I was a patient of a number of eminent ENT specialists in London, at the ENT hosplital in Kings Cross and another neurological teaching hospital, and they couldn't commit to this diagnosis... they even admitted that even if they knew what was wrong with me, they wouldn't know how to help!
ALL THIS TIME NO ONE THOUGHT TO LOOK AT LEVO...
It got so bad, that I have had to wear hearing aids this year, since about February. Nightmare.
The Audiologist responded to my questions with " Oh no, thyroid has nothing to do with hearing loss" FFS.
Any casual search of "hearing loss/tinnitus/fullness of the ear and THYROID or Hypothyroid, brings thousands of hits. It clearly IS an issue.
This was my dilemma:
Was it thyroid hypo related (was I converting T3 well enough / medicated sufficiently /Vitamins etc etc - ie. a T3 issue...) or was it the actual medication itself?
So.. many blood test later - on Levo - all is well with T3, Vits etc optimised, diet on point, lifestyle changes made.. come off Propranolol (which I was on to help with the Migraines... caused by levo!) - and now there is only one possible avenue left.
And bingo, with NDT, everything changes. Hearing restored, tinnitus down to maybe 5% (I ride motorcycles for a living, so not massively surprised by that), no vertigo... masses of energy. Happy bunny. This is NOT a coincidence!
I have had a rainbow of drugs over the years given to me to cure my "Menier's"... I've been on beta blockers to stop vestibular migraine for 3 years. I was on antidepressants for a while for the same reason.. I was even offered critical surgery to cut the the nerves to my semi circular canals (to stop the spinning vertigo (which was extreme) - despite this rendering me permanently deaf... and all along it was Levo, No doubt in my mind.. So I could have been permanently disabled by Doctors, who couldn't even engage their huge brains long enough to look up shit on the internet, before cutting into my head with a scalpel.
If I sound a bit angry, I am beyond angry. At myself partly for not trying hard to follow up on my 100% accurate instincts and allowing 18 years of my life to pass me by in this misery.
We trust doctors because they are supposedly "experts" which enables them to exert influence over us as we are hypnotically trapped in their "authority". They don't know much and the best ones admit this and encourage you to take responsibility.
If a symptom looks like something they can dump on you (Menier's was my Bete Noir) - they will gleefully do terrible stuff to you.. and if they are wrong.. who cares.
My most recent entertainment was waiting for my GP to jump on the hyperglycaemia blood test that came back from the local lab with helpful comments about changing my lifestyle and/or being sent to a diabetes clinic.
Doctor was visibly thrilled to have something to pin on me.
By the time I was finished with him, he was begging me to leave, as I had him pinned down with facts about hypothyroid, T3/T4 issues causing hyperglycaemia etc etc.
I wanted him to admit his ignorance, and only left when he did.
I eat a perfect diet, teach martial arts and am a bodybuilder. So I wanted him to explain what lifestyle choices I needed to make (start smoking eat choccies and lie around all day maybe).
Anyway... sorry to rant on, but you poked a stick in a wasp nest with the Menier's thing. I absolutely feel for you if you have this condition and truly hope that you do not in fact have this as it is chronic, progressive and incurable (I have never heard of it being an autoimmune issue, but it has been a few years since I walked away for it). I can only describe my journey, and wish you very well on yours, good luck!
Wow! You stopped me, and dished great info for all...bravo you risen, I myself am on armour compounded, thankfully! I hope many read, over, over, be well and go ride that motorcycle!
Fist pump! You describe the attitudes of so called professionals so well! Our nurse practitioner (who thinks she's a doctor) "gleefully " announced that she had found the answer to the fatigue, malaise, joint pain, bone pain etc etc etc that I began reporting in 2008. She tested me for Epstein Barr Virus a few weeks back (glandular fever) and it came back positive for a past infection. "Well" she said triumphantly "that explains it! I'm afraid there's nothing we can do about it. You may just have to accept your limitations. But at least you know what it is now!" What the actual duck?! "But this is a really common virus." says I. "No. Pretty rare in my experience". Says she slowly. (I think it's dawning on her I am not accepting her "diagnosis"). "Something like 90% of the population have this in their system from childhood. If EBV were causing this most of the country would be sick!" No answer. Changes the subject. But I have another ace up my sleeve. I was tested negative for EBV 2 years earlier. If she'd have read my notes she would know this. "So what you're saying is" says I "is that a virus I have had in the last 2 years is the cause of the symptoms I began reporting 8-10 years earlier?" I kid you not. She STILL went on to write "EBV looks the most likely cause of chronic fatigue" on the referral she gave me just to shut me up. Thought I wouldn't see that letter I'm guessing! (Incidentally CFS is the one they keep trying to pin on me). My jaw was dragging on the pavement all the way home. You couldn't make it up!
Hi there, that's awful. But it highlights the fact that if someone unqualified can make a diagnosis that could seriously affect the rest of your life, you might as well ditch the doctors and... Wow... Nurses (!)
In favour of self diagnosis, testing, research and indeed medication.
Not being controversial here, but we are all entranced by authority symbols and are way too ready to put our trust in uniformed "experts"... With the Internet it is now possible to take control.
I seriously know more than my GP about my conditions, and have forced him to admit this through informed argument and thorough research.
Ego has a lot to do with the kind of mistreatment you describe. Dangerous stupid people, dressed as "experts".... it goes to their heads.
Hope you find health and happiness, even if you have to do it all by yourself!
My goodness that is truely awful I am so sorry that you had to experience this. THANK YOU for sharing all this information, as you can imagine it is very interesting to me and very sorry for poking the nest. I am delighted that you have managed to solve it for you, the Ménière’s situation is truely hell on earth and sadly I think for me the diagnosis is correct. But I am not going to forget your story and if I have a relaps again will look again at this connection you have discovered. THANK YOU very much for sharing. X
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