Thyroid and ectopics

Hi guys and gals. First time on here. I had graves diesease 6 yrs ago and had radio iodine . Last 2 yrs life changed. Crippling vertigo with severe panic and fear and ectopic beats ive had the last 2 yrs. Drs say heart is good. I went to a new thyroid dr as i wanted a second opinion. I spent last night in the er with ectopics ( ruling my life) as thats what they think i have for 8 hrs and left with " all ok" im on 125 thyroxine daily . Results from hospital came back i still dont know thyroid results after 6 yrs They said my thyroid was off but gp swid it was fine and seeing my endo in 4 weeks so wanted advice . Tsh 4.22 and t4 18.2. Is it?? Xx thankyou all xx


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30 Replies

  • Sorry to hear you're not well. Your tsh is awfully high. Do you have the lab ranges (the numbers in brackets after the result)? Your t4 looks unusually robust for having such a high tsh but depends on range.

    Ideally you'd have your t3 results too. Do you know if they've ever tested it? Would also be good to know what your ferritin, iron, folate, vit d and b12 look like.

    You need an increase in your levo at the very least. Your tsh should be closer to 1.

    If it helps I had all sorts of odd heart stuff (feeling like the heart beats were missed or late) before being treated for hypothyroidism.

  • Thankyou so much for replying you are wonderful. I have aneamia atm with haemoglobin at 109 and am on iron tabs. I rang my new thyroid dr and he said its not that high and to continue the dose im on until my next blood test.

  • Sorry to dispute that but the aim of treatment is hardly to get your results to squeak in barely in range, the aim is to restore health. Your doc has failed the litmus test of thyroid treatment. :-)

    Apologies, I really must make a file of these links, but someone here - Seaside Susie maybe? - has the link and/or text from Dr Toft that states clearly the aims of thyroid hormone replacement, and it contradicts your doc's idea that tsh over 4 w symptoms is 'not that high'. It is not that high when it could be 20, 50, 100 etc, but you don't aspire to be more ill, you want to be closer to the healthy end of the range, that is why we pursue treatment.

  • How do i know thwy ate ectopics amd not something dangerous or become dangerous. 2 times in 3 weeks episodes of lobger than 6 hrs of eveey 5 tem min of thud like the blodd is pumping enough . Its horribke i have no life. Im scared its something more sinister.

  • I guess if your docs are saying your heart is ok that sounds like they know what you have is benign. Have you had a referral or is this just your gp speaking?

    I can only tell you that heart stuff - palps, knocking, pounding, racing, skipped beats etc - is v common when hypo. MIne went away on enough meds.

  • I habe 3 echos and 2 stress tests andheqrt is peefect they say. Bjmut doesnt help when these palps are stopping my life. Afraid something electrically Will go wrong. Also how can i relate it to my thyroid or anaemia. Drs are useless.

  • Anaemia is another potential cause. Do you take supplements for it?

    I don't know that you need to prove that this is what is causing your palps, if you are undertreated there are a lot of reasons that should be addressed, and if you're anaemic that should also be addressed.

  • That's why i mean. What if something is wrong and they havent caught it. The frying is so frightening and i dont enjoy life in constantly worried.

  • Well there is plenty of evidence here to suggest that something is wrong and something should be done about it. It doesn't mean your heart is going to go wrong, it means your heart is telling you you need to have your hypothyroidism and anaemia treated.

    If you have had all these investigations done you know better than most of us that to the full extent of medical knowledge your heart is fine. You can accept is and try to fix the things you know are wrong (uat and low iron) or you can obsess on the things that have not appeared on any of the many tests that have been done and make yourself anxious (which can also produce palps).

    The kinder, healthier choice would be to address the things you already know are wrong and try to take your mind off the many things that can happen in life that no one can anticipate.

    I sympathise and I know it can be tough, but as they say any one of us could get hit by a bus tomorrow. Try to focus on the stuff you can change. I wish you well. :-)

  • Hi tjere im back again i had my etipics slow down so much with new tjyroid dose for few months iron still low amd thought they went away. They came back tonight and the anxiety comes back instantly. I becone so panicked. My nre thyroid levels are tsh 0.82 t4 19 t3 4.7 but my feritin is level 14. Im scared again. Please helpi feel my heart will stop

  • Is there a reason your ferritin is so low? If you feel your palps improved on a new thyroid dose that points to everything going in the right direction, but Idk why ferritin hasn't been addressed. Or are you taking iron but it isn't be absorbed or retained? If the latter that really should be investigated. You may be losing blood somewhere or failing to absorb the iron. It needs looking at.

    As I said above, anaemia can cause palps.

    Any chance you took your levo before the blood draw? You don't give the lab ranges but to my eye it looks either like you took your levo on the day or you're not converting very well. Your t3 seems low and t4 high.

    If it is any comfort you've had these palps for months now and you're still with us so I think it is likely these are benign but annoying/alarming phenomena that might just be a symptom of your low ferritin (and previously a symptom of your undertreated thryoid).

    Have you tried cutting out caffeine? I find I get a lot of heart thumping from that. You may have to find ways of addressing your anxiety, which will not be helping.

  • My endo said I'm eurothyroid now where everything is better but lowered my dose even more. I do not stop taking the medication before the blood test as it part of my daily life. As few months ago I was taking too much thyroxine so maybe that was it hence why is saw a diff endo as I was only being seen every six months. He tracks everything. I have thallesemia and have been on and off anemic since I was 16 now 34 and was told it was from my heavy periods but only within the last two years I felt the flip flops and before then had anemia and thyroid and never had a problem. :(

  • If you take your meds in the hours before a blood draw it can give you an artificially high t4, which is likely to result in a reduction of meds. Next time you should leave your meds until after the blood draw.

    When were you 'taking too much thyroxine'? None of the above results look like you were on too much thyroxine, but that can give you palps too.

    I think it's a good idea to do a post where you set out all your results in chronological order (with lab ranges) and list your symptoms and it will make it easier to see what is going on.

    Good luck.

  • Contra21,

    You are under medicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in Email if you would like a copy of the Pulse article to show your doctor.

  • Last month my thyroid was tsh 2.59 and t4 12.9. It has been 6 yrs on thyroxine and i still dont know what is going on with my thyroid. The drs said the above results were normal and eurothyroid. Whay do i do if even my new endocrinologist says that the current results of tsh 4.22 is ok and to continue the dose im on as he feels my thyroid are not responsible for my ectopics.

  • Contra21,

    An endo who thinks TSH 4.22 is okay and isn't why you are having symptoms is rubbish. Ask for a second opinion or change your endo. You won't feel well as long as you are under medicated and your TSH remains high.

  • Whats levels do i need to aim for?

  • Contra21,

    Read my first reply to you.

  • The other possibility is that yes your FT4 is high in the range though we can't be absolutely sure with out your ranges as they differ from lab to lab, bit you may not be converting the storage hormone T4 into the active T3 that every cell in our bodies need but again we can't tell that with out a FT3 result, that could be very low.

  • Contra21, just seen that you are already on thyroid replacement. In that case you are seriously undermedicated! Fron the original post I thought you were trying to get them to start you off on hormone - your levels are actually bad enough to get an initial diagnosis!

    You seriously need an increase! If I were you I'd be tempted to go home and increase 25 or 50mcg from my current supply. But overall you must hassle the doctors to get a full check including freeT3, and to get your TSH down closer to 1. If your current GP won't do that, it's worth changing, as they know nothing about thyroid and will just make you ill!

  • My new endocrinologist after seeing one for 5 yrs says tsh of 4.22 is ok and to continue on 125 one day and 100 on the other. I dont know if my ectopics are from this my aneamia im so lost amd so depressed. These symptoms are ruining me.

  • 4.22 is definitely not okay. Officially it should be closer to 1, but many people don't feel well until theirs is suppressed. This will be causing a lot of symptoms!

    People who are more knowledgeable can recommend papers and books to show your doctor to demonstrate that.

  • What if oit idn't ectopics the ese heart thuds also in throat are freaking me out

  • Guys my ectopics who knows if thats what they are , are crippling my life. 3 weeks ago thuds in chest and throat would hair every 5 min for 6 hrs longest bout yet. Now yesterday 3 wks later happened again for 9 hrs. This time i didn't go to the hospital but im freaking out. Could bowel health be a connection or am i just freaking out about my chronic hemmoroids and is symptoms. Pls heap me on any advice i should take. I just want my health back.

  • Ectopics often feel a lot worse than they actually are. Has anyone explained what is happening? An ectopic beat is when one beat comes a little early so not much different than usual but because to it is early you get what is called a compensatory pause to make up for the fist one being early so the second bump happens how it should be so that feels like a bigger gap which it is. I ageee it it can feel very different and frightening. But because of how it presents you feel it must be a heart problem but it's more likely a problem elsewhere that you heart is trying to help you with. Now your heart had the job of pushing blood around your body but the blood carries other things like oxygen, things that need to move into your cells and things that need to move out like carbon dioxide. Our bodies need everything in place to be able to work properly and efficiently. Have you any general blood results as they often show up things that are low? With such a high TSH though I agree it's probably because you are slightly under medicated and so I would want to look at a slight increase not a decrease of meds

  • I have aneamia also but have thallesemia trait so was advised iron tablets in the long run could damage my liver. ( from my natropath ) They never happened i just feel like they go for three week and them happen for 5 6 hours of big thuds takes my breath away and happens every 10 min all started when i got vertigo and my balance has never been thr same gave me ptsd bow 2 yrs with ectopics if thats what they are as she is going off my resukts from a yr ago which i will ask her to start fresh so i have a clear diagnosis . All tests are clear bit i worrt its something sinister electrically that hasnt been caught. How to incrrase my iron quickly aside from food which takes forever! But this new endo testing me for all sorts of anti bodi viruses and will find out wed and thurs i see my electrophysiologist again.

  • Thankyou for being so lovely and helping me feel so confused and alone amd been on thyroxine 5 yrs now from initial graves

  • I am underactive so no experience of Graves but you will never be along on this forum so glad you have found it! In an earlier life I was a physiology technician working with medical students and I've picked up a lot along the way. I know it's easy to say but not too easy to do but try not to worry.

  • Im having thr thumps now amd freaking out. Everytime they do it to me. I feel like i want to go to the hospital as i feel something horrible will happen. Dr said now im over medicated. Can i shoe ypu my results. Also im now somethi g parathyroid

  • Ok gys i tested for parathyroid. Level is 30. Dr said its not serious any help??? So scared

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