Hypothyroidism and Pulsatile Tinnitus

Discussion in 'Support' started by helenr1981, Feb 2, 2016.

tinnitus forum
    1. helenr1981

      helenr1981 Member

      Location:
      UK
      Tinnitus Since:
      06/2012
      Cause of Tinnitus:
      Pregnancy
      Hi all! I first noticed my PT when I was about 6 months pregnant with my LG back in 2012 (I didn't know it was pulsatile then, just referred to it as tinnitus). From a bit research I found it can happen during pregnancy so didn't mention it to the doc and tried to grin and bear it hoping it would stop after childbirth - it didn't. Also at that time I didn't know I had a thyroid issue either.

      So as times goes by I start piecing together symptoms that make me go to get my thyroid checked in 2014, it came back high TSH 7.05 and within range T3 making it borderline underactive and I was started on 50mcg of levothyroxine to be reviewed 12 months later. Up until this point the PT wasn't overly bad, sometimes it was more noticable than others, but the levo really helped with it, and the other symptoms too (tiredness, coldness, weight issues, headaches, weakness, hair loss etc), though around 9 months in the symptoms gradually got worse again, the PT starting raging on, and considering one of the symptoms is tiredness, to then go to bed and not be able to sleep because of it is massively frustrating! I have to sleep on my back, head tilted left with the pillow wedged onto my pulse to make it quiet enough to sleep, if I moved it was game over! It was thyroid blood test time and it came back even higher TSH at 8.18 (I was so excited this would mean more levo!). Between getting results and having a telephone appointment with the doctor I upped my dose to 100mcg and by the second day I couldn't hear a thing, bliss! Gutted when the doc said they'd change my dose to 75mcg and review it in 8 weeks. I did as I was told and took the 75 and the PT was there religously whooshing round my left side every night - to the point I dreaded bedtime! They've just done my bloods again last week, between giving the sample and speaking to the doctor this morning I upped it to 100mcg again (and had 2 nights of blissful silence!). I spoke to the doc earlier and they've come back TSH 2.03 which is in "normal" TSH range, so haven't bothered checking my T3! I got quite upset and told them I wanted to trial 100mcg as the PT was becoming unbearable, I hear it through the day if its quiet but night time is so bad! She agreed to let me stay on 100mcg for 4 weeks then do bloods again, she said "I don't see why it would be making a difference though?", told her I'd done a little research and PT can be linked to thyroid disfunction, which she wasn't sold on, but I KNOW it is and so pleased she's upping my dose, and I will ask that all blood levels are checked next time, not just TSH.

      So I was wondering, does anyone else link their PT to thyroid problems, and has it been relieved with meds? I had a quick look for hypothyroidism and PT threads but couldn't see any, hope this is alright to post. Thanks.
       
    2. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      I have a mild case of hypothyroidism and switch between 12.5 and 25mcg levothyroxine depending on how my TSH is.
      Never made a difference for me, as far as t is concerned. I've even gone up to 200mcg out of curiosity, no change.
      You're the first person I've ever come across that can control tinnitus using thyroid hormone.
       
    3. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I have both PT and hypothyroidism. I've been on the same dosage for many years -- 100 mcg. My PT started five years ago after I took a blood pressure drug for the first time. I'm off that drug (and all blood pressure drugs) now, but my PT remains. I believe there is a link, too, between hypothyroidism and PT, but cannot prove it.

      I'd be interested to hear from other people with both PT and hypothyroidism, to see if they think there is a connection.

      Thanks for posting this!
       
    4. James
      No Mood

      James Member Benefactor

      Location:
      California
      Tinnitus Since:
      Pulsing 03/2013
      Hello @helenr1981
      Sorry to read that your troubles PT. I have it too. It's a terrible thing. One bad overly exhausting day, and it seems to just get worse, for days. I really need the sleep, well. Helps my energy level.

      I also have thyroid problems, -too much. I've read about the connections. My Doctor is the same, just the TSH level check. She thinks if that’s ok, that’s all that matters, any other T level must be ok.

      Every so often, I get on the TSH level issue, thinking the meds are off. Email the Doctor, get another blood test. Skip some med days, mines too low TSH level. I have not been able to connect the meds or my THS level with my PT.
       
    5. helenr1981

      helenr1981 Member

      Location:
      UK
      Tinnitus Since:
      06/2012
      Cause of Tinnitus:
      Pregnancy
      Hi Karen, thanks for your reply - have you asked your doctor to up your thyroid meds to see if it helps, or in my case I just did it myself as an experiment as upping it to 75mcg helped reduce it during the night, but not when first going to bed, maybe I got lucky! I would definitely ask the doctor if you can trial a higher dose, if it makes no difference drop back again.

      Hi James, oh I totally get where you're coming from, when you need the sleep the most the PT seems to rage on! If I were you I'd be asking for a referral to a specialist, as theres a multitude of causes and I don't think GP doctors necessarily have the information they should to help, TSH alone isn't always the reading needed but they think it's suffice. As it is having an effect on your life I would definitely be kicking up a bit of a fuss with the doc!

      Really hope you both progress with your PT, and get the blissful inner silence!
       
    6. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      For me, the link between thyroid problems and tinnitus is absolutely beyond question. More specifically, between taking levothyroxine and developing tinnitus - for me, that was the trigger to developing it.
       
    7. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, @Owen,

      Do you have ringing tinnitus or pulsatile tinnitus as a result of taking levothyroxine? I have both: A high-pitched hissing tinnitus, and pulsatile tinnitus. I had the regular tinnitus for many years, as a result of loud sound. However, my tinnitus worsened, and I also began having the pulsating, after taking a blood pressure drug.

      After that, my doctor thought cutting back on my thyroid medicine might help, so she cut me back from 125 mcg to 100 mcg. I am still taking the same dosage, almost six years later.

      I still have both types of tinnitus in my right ear only.

      I'd be interested to hear more about how yours developed.

      Thanks,
      Karen
       
    8. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      Hi @Karen

      This is a repost from elsewhere on the site, but I covered it in quite a bit of detail, so may be of interest to you. The first 5 paragraphs are the most relevant to the Levo. Personally, you couldn't pay me to take it again, but I appreciate that I am unusually allergic, but poor tolerance to it is quite common (the private endo I saw estimated about 2% to 5% of patients don't tolerate it well) - something the average GP knows nothing about:

      Sorry if this gets a bit long, but it isn't easy to answer in a short sentence.

      Mine was a rare allergic reaction to Levothyroxine. I had all manner of symptoms from it before tinnitus developed and was in and out of hospital for months for other inflammatory conditions, ranging from skin rashes at the mild end, through to appalling allergic reactions that would make my nose stream for hours, to facial, throat and jaw pain and even the lining of my mouth pealing away leaving open sores - there were more, but you get the idea. I was prodded and probed for everything and I kept asking if it could be the Levothyroxine, but was repeatedly told no, even though all of these symptoms started around 1 month after starting treatment.

      Eventually, I told the doctors that I believed it to be the Levothyroxine and against their judgment, went for private treatment to receive something called NDT (it is thyroid hormones that has been extracted from pigs, rather than synthetic) - it is not licensed in the UK. The endocrinologist I saw was aware of many of the issues that some people suffer, although he acknowledged that the severity of my problems was at the extreme end of the scale.

      24 hours after I changed drug, for the first 3 days, my hearing was completely normal, my skin started to feel less sore and I thought "wow, why didn't I just stop taking this crap sooner?", but then, all hell broke loose and I had screaming, jet engine noises etc and I thought I was going to lose my hearing - I was terrified.

      Out of fear, after 3 more days of screaming in my head, I took a Levothyroxine tablet to see what happened and within 24 hours, the tinnitus was back to its previous level and I took it for a couple more days, but other issues returned. I tried this cycle several times, until eventually, I could see such a repeatable link between the two. I went to see an ENT about this and was given absolutely nothing and despite the evidence, told it was unrelated. Realising that there was no hope from the medical profession, I just went for it on my own. 3 months of absolute misery followed. I stopped sleeping and instead used to pass out once every 3-4 days through exhaustion.

      Over time, this started to improve - albeit slowly - until eventually I find myself where I am today. I still have hearing issues and flare ups and have moments of weakness where I find myself really depressed and low about it, but no-where near where I used to be.

      I no longer have any of the other inflammatory conditions outside of my nose and sinuses, they have all gone and after suffering with them for the 2 years solidly that I was taking Levothyroxine, there is a very clear link. Some doctors I have seen accept it, but others still refute the connection - amazing when I was suffering from 15, known, albeit rare, side effects (something that I was not aware of at the time).

      Link if you're at all interested in the side effects of Levothyroxine:

      http://www.webmd.com/drugs/2/drug-1433/levothyroxine-oral/details/list-sideeffects

      I still have a lot of congestion around my head as a result of the severe allergies and get flare ups in my sinuses and nasal passages which in turn result in worsening of tinnitus whilst they are present. My audiologist agrees that it is an unusual case and may have even offered some useful information about tinnitus in general if regular scans and tests had been taken from the start to try and understand the processes occurring in its development and healing. Although she considers it too late for much , she has written to and recommended that the local eNT department shows a bit more interest, so I have another appointment in 4 weeks (it should have been 2 weeks but they moved it - you couldn't make this stuff up).

      Has an ENT had a look up your nose or taken any sort of X-rays or scans? If not, they can honestly tell almost nothing by looking in your ears. There are so many problems linked with hearing that are utterly invisible by looking in the ear.

      Unless through noise induced hearing loss, hearing tests are useless for tinnitus and even then, don't always reveal very much - loads of people with apparently good hearing have tinnitus.
      Unless a middle ear infection is present, or lots of fluid build up, looking in the ears is useless. There are lots of middle ear problems that don't show up from looking in the ear.

      I can of course give you no indication as to whether or not it will go, but it might. I know you are in the early stages of it and at the moment and you're looking from reassurance from people further down the road, so hopefully the amount of information I have shared with you shows that it can improve. I promise that I am not embellishing how bad mine was at the start, it really was unbelievably loud, but now, when it goes for a while, it genuinely is gone, it isn't that background noises are masking it. I remain hopeful that I will be someone writing my own success story on here in a few months time. It took over a year of taking Levothyroxine for tinnitus to develop, so at the very least I believe it will take a full year after stopping for it to resolve. That take me to mid-June this year. Even then though, the total time I took it for was 2 years and 2 months, so it would not be wholly unreasonable for it to take that long for everything to return to normal.

      One last thing to share with you over my case that I have not made clear is that some of the noises I hear are concentrated seemingly in the ear, whilst others appear to be somewhere centrally in my head. At ties, neither are present and at others both, or one or the other. I believe the central ones to relate to a slightly different mechanism from Levothyroxine than those in the ear. The ear tinnitus first appeared in my left ear and it was there for 4 months before transitioning to my right ear. Other than the odd tinkle that appears now and again, the left ear has remained free from tinnitus for a year now. What caused the transition is anyone's guess, but if it can go from one ear, surely it can go from the other.

      Finally - and I promise this is it, I must admit, a lot of the advice I have read doesn't really apply to me. Food stuffs make no difference to me. I can eat and drink what I like and it makes no difference - with the exception of alcohol, but then alcohol does dry out the nasal membranes and I feel bunged up and whenever this happens the ringing in my ear is worse so it isn't surprising that it has some effect on me. Being stressed or tired doesn't make mine worse - in fact, I have been at my absolute wits end about it and wanted to scream and suddenly, it just fades away to nothing. What I would say though, is eat well and look after yourself. Not because it is going to have any profound affect on improving your hearing, but it will put you in a better position to cope with it when it is bothering you. For me, the emotional response to tinnitus can be worse than the tinnitus itself.

      Again, apologies that it is such a long reply, but you did ask ;).
       
      • Like Like x 1
    9. James
      No Mood

      James Member Benefactor

      Location:
      California
      Tinnitus Since:
      Pulsing 03/2013
      Hellow @Owen

      Thanks for sharing your experiences, and the story. I am a Levothyroxine user. I have to take it, to maintain ballpark thyroid levels. I will follow your link, see what it says.
       
    10. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, @Owen,

      Thanks for telling us your story! I'm so sorry you had all those problems from the levothyroxine. It just goes to show you how drugs can affect each individual differently.

      I'm very lucky, I guess. I don't have any of the side effects mentioned in the WebMD article, except the hair loss. That is just an ongoing side effect that those of us with a thyroid condition must deal with.

      Like James, I am a life-long user of thyroid medicine, because my thyroid symptoms are too severe to do without it. James and I both suffer from pulsatile tinnitus. Is it related to the thyroid meds? Hard to say.

      In my case, I didn't have any major problems with my mild tinnitus until I took a blood pressure drug for the first time. Who knows? It could be that the combination of the blood pressure drug and the thyroid drug were too much for me. Now, I have both severe tinnitus and pulsatile tinnitus in my right ear only.

      Again, thanks for your story, and I hope your tinnitus continues to improve.

      Best wishes,
      Karen
       
      • Like Like x 1
    11. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      @James @Karen

      I would never suggest anyone messes about with their medication, but you could discuss NDT with your doctor, to see if it helps with the tinnitus. I have spoken to a few people that didn't develop tinnitus until after taking Levo. Difficult to say in their cases whether or not it was the Levo, or thyroid problems that caused it though (or neither), as they weren't so obvious as mine during onset.

      I see you are both located in the US. It is actually far easier to get NDT over there than here in the UK. My GP refuses to prescribe it as the local health authority will not cover them for insurance, so they are personally liable in the event of any issues, so the prescribing doctor has to have there own insurance - or one can import it.

      I think the thyroid problems make me less well equipped to deal with the tinnitus as I need more sleep, but the tinnitus bothers me more at night, so I stay up later to make myself more tired so I can get to sleep. I used to be that guy that jumped out of a perfectly serviceable aeroplane for fun or floated down white water having purposefully thrown myself out of the raft. Sadly, I'm either too tired, or too worried about messing up my hearing further that I don't do these things anymore - and I'm only in my 30s :(
       
    12. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Yes, you're right, Owen, I do think it's easier to get natural thyroid hormone prescribed here in the U.S. I haven't talked with my current doctor about it yet, because I'm almost a little bit afraid of the side effects of switching to something else. The last time I tried to switch to anything else (a generic), I ended up feeling very dizzy for at least a week. I'm not sure I could handle that, on top of tinnitus and pulsatile tinnitus, too.

      I'm in my late 60's, and it's a lot harder to take anything new when you're older. So, that's why I'm still on Synthroid.

      I do hope yours continues to improve. Thanks for sharing your thoughts with us! It's good to hear from others who are experiencing similar conditions.

      Best wishes,
      karen
       
    13. Aliceforbes

      Aliceforbes Member

      Location:
      PA
      Tinnitus Since:
      11/16/2015
      Cause of Tinnitus:
      Not sure.
      Hi Helenr1981,I think my PT started because of my Hypothyroidism. About 10 days after it started I found out my thyroid was way off its number. I don't remember what it was. They put me on 200 mug from a 175 mcg. It didn't affect the PT. just had new blood work done and thyroid is now a little over so I'm back on 175 mcg. I told doc I think thyroid was why I got PT he said no it's not. I've had an brain MRI and a ultrasound of neck and all were negative. I asked if there were any other tests I could have done for blockages else where in body and he said no. He wasn't my regular Doctor just saw him because my doctor was out. I'm so upset as to how he just didn't seem to care. Long story,sorry just wanted to say thyroid meds never did anything to make PT better.
       
      • Hug Hug x 1
    14. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, @Aliceforbes
      There are other tests that you can undergo if you are concerned that there is a blockage of some sort, such as a CT scan or even an angiogram. However (I think you're like me on this), I'm not sure there is a reason to keep on having tests. I'm pretty sure my PT was caused by a reaction to a blood pressure drug, which may not have agreed with me because I am hypothyroid.

      I hope you're doing well these days, and that the PT has not gotten any worse for you.

      Best wishes,
      Karen
       

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