Over active Thyroid surgery?

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Hello folks, I was unwell last year just after my 40th Birthday and was soon after told I had an Overactice Thyroid, I was put on crabimazol and propanol to lower the thyroxine. over a year later im still on the carbimazol and also taking omeprazol for my stomach. I have been given the choice of the iodine drink or surgery. I have an 8 year old son and pets. I was told if I chose the drink I would have to be isolated from them for 4 weeks. That sounds to me scary as hell. not just for me but my family. Then the doctor told me that the drink is not a 100% cure and could have to do it again 6 months or a year down the line. then if it still didn't work I would have to go for surgery. The way I see it as whats the point, just go for the sugery and get on with my life. So i have made up my mind to go for the surgery. Its scares the living daylights of me at the thought of surgery on your throat.

The thing im looking for this forum is some advise on what happens after the operation. Whats the recovery time? how long will I be in hospital? To all who has been through it, have they had other effects since and how well they feel after surgery.

I probably need some reassurance but i'm scared as hell and don't know where to turn.

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  • Posted

    Hi there, I opted for surgery for the same reasons as you.  Surgery was a breeze. I had my tt 8 weeks ago.  I went in on the wednesday and went home on the friday evening.  They tell you to watch out for tingling of mouth which means calcium going low and sometimes give you supplements.  I ended up back in for a day with calcium issues but this isnt the norm.  I was given 4 weeks off work by my doctor.  Some people go back in 2 weeks, it all depends.  I am feeling ok, still trying to get levels right on levothyroxine.  It does take a while.  I think it was the right decision for me to get it done.
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    • Posted

      Thanks for your reaponse,

      So with the new meds, do they have to get that right as well. Have they given you a time scale for that to correct itself. has all you symptoms for before the op gone?

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    • Posted

      It takes trial and error to get levels sorted.  I was started off on 100 mg of levothyroxine and was still hyper.  It was dropped to 75 mg which I feel is too low.  Hoping to see endo soon to discuss.  The horrible sweats have gone, I sleep better, no tremors and weight has stabilised.  (didnt mind the weight loss though!).  From what I have read it will take a while to get back on an even keel again.  I dont suffer from palpitations any more which I always hated.  I can do more walking. Hopefully it will all be worth it. 
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    • Posted

      Thanks. I just hope I feel better, this past year has been horrible. The mood swings and anxiety is horrible. Regarding the weight, I am not worried about that, I stopped smoking a while back and with being unwell I put on 4 stone. I have lost most of that through going to gym and a heck of alot of cycling. Changing diet as well. So if I gain weight, it can be lost again. Rather be feeling better.
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  • Posted

    You did not say you have Graves or Hashimoto's but I am assuming your hyperthyroidism has an autoimmune cause?  If this is the case, removing your thyroid does not remove the antibodies.  My cousin had thyroid cancer and with her thyroid removed, she never can get enough levothyroxine.  Her doctor has told her she has to stop taking such a high dose.  This is because levothyroxine is synthetic T4 only and your thyroid produces T1, T2, T3 and T4 thyroid hormones.  A lot of people on synthetic T4 cannot conver to T3, the active hormone.  One lady even made a documentary film about it.  I have Graves and I have been able to get it in remission using supplements and a low dose of methimazole (similar to Carbimazole in England).  I would rather keep my thyroid and I feel fine.
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    • Posted

      Hello Linda, I have a question, I finally got my thyroid in check, I know you said once you get it there you should change your dosage for cartinines! I'm taking 1000 acetyl l carnitine and 1000 l cartinine, should I change my dosage or stay the same or get rid of one? My PTU dosage didn't change, he's keeping me on 2 50 mg daily ! I truly don't want my thyroid to go back up because of the hair loss which is slowing down some after already losing half of my hair since January ! Just wasn't sure what to do? Thanks in advance for answer!
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    • Posted

      Renee I can honestly say the Acetyl-L-Carnitine is way more sensitive than the regular L-carnitine so you have more leeway with the Regular.  You can take up to 3,000 mg of the regular L-carnitine.  That was what was used in the study on it.  The Acetyl however, is quite a different story.  It will shoot your TSH up extremely quickly and the Frees down to the bottom of the range so you have to monitor it and adjust by lowering the dose or stopping it altogether if your TSH is 1.5 or over and also possibly lowering the dose of antithyroid drug in order to avoid hypo.  I think 500 mg of Acetyl would be better if you remain on it.  250 mg is even better but it is very difficult to find at that dose.  I do not know what it does when combined with PTU because I combined mine with Methimazole but I would imagine the results would be similar.  The acetyl crosses the blood-brain barrier so I think it gets the antithyroid drug into the cell nucleus.  Have you had labs done recently?  If so what are the results?
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    • Posted

      I would discontinue the Acetyl now or you will go hyper really quickly.  It can always be restarted if needed again.  Your lab results are normal now and hyperthyroid patients do best when their FT3 and FT4 are in the middle to upper level of the normal range.  Your TSH is at a good level.  People whose TSH was 0 like mine when I started do best if it goes no higher than 1.00 or 1.5 even though the normal range is up to 4 or 5 .  Your T3 is a little towards the lower end of the range and will rise a bit if you stop the Acetyl.  If you stay on it, with levels where you are at now, you will go hypo very quickly.  I am surprised that your doc did not adjust your medication dose slightly though.  I do not have experience personally with PTU.  I would stop the Acetyl and see a)  how you feel; and b) where your next labs are.  If the TSH drops, then I would take no more than 500 mg when you restart it.  Now that they are in range, like I said you can go very hypo very fast if you continue on it.  I think the hair loss and other unwanted effects come from dropping the antithryoid meds (PTU) dose too much too quickly.  If the doc makes adjustments in that dose, hopefully it is a small amount at a time.
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    • Posted

      I have stopped both now.  My course was that I started on the Regular L-Carnitine which helped how I felt and raised my TSH slightly, and then I added Acetyl-L-Carnitine which brought my TSH up to 0.78 so I was taking both then.  Then I could not get the Acetyl for a while (over a year) and I stayed on the Regular alone until Acetyl was available again.  At this time, my TSH dropped down to 0.12.  Once it was available again, I only took the Acetyl and when my TSH went over 1.5 up to 2.7 and I had palpitations, I stopped it and my symptoms improved as did my lab tests.  I did try to take only the Regular then but still had symptoms of palpitations so I have stopped both now but if my TSH falls to something like 0.12, I will gladly restart the Acetyl again or Regular depending on how I feel, what my symptoms are and what my lab values are.  In your case, your results are fairly good now, how are you feeling?  How are your muscles?  If you are feeling okay, stop both.  If your muscles are still a problem taking the Regular will not affect your blood values a lot like the Acetyl does and will help that symptom as long as you are taking no more than the recommended dose.  If you notice you have palpitations, stop both of them.   You have a lot of leeway adjusting the supplements but huge drops in meds at a time tends to cause rebound effects so I am glad my docs lowered my doses gradually, like by 2.5 mg at a time.  It is always a good idea to work with your doc in adjusting the meds dosages and since they don't know much about supplements, you need to pay attention to your body, your symptoms and make your own decisions about the supplements or work with a Naturopath if you do not feel comfortable doing that.
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    • Posted

      Ok Linda ! Thank you, I feel ok right now however I'm on a beta blocker so I will stop taking both for now and see how it goes! When you say regular cartinine you mean the L correct? So confusing sometimes! So with going off both and then feel symptoms go back on regular?
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    • Posted

      With going off both, if you feel symptoms, first get your blood levels checked and if they are out of range, i.e. the Free T3 and T4 are at the very top of the normal range or over it and the TSH is extremely low out of the normal range, start the Acetyl at 500 mg.  If the results are all in range but you are feeling symptoms, you can take the Regular L-Carnitine.  The two types of carnitine are called L-Carnitine and Acetyl-L-Carnitine.  Most people whatever their cause of hyperthyroidism, do not have problems with the regular L-Carnitine whatsoever and Hashimoto patients do especially well on it as opposed to the Acetyl-L-Carnitine because it controls their symptoms and keeps their blood levels stable because it has a different mechanism of blocking the excessive thyroid hormone than the medications do.  Hashi patients react too strongly to meds causing them to flip frequently from high to low or vice versa.  Graves patients, especially those whose TSH will not rise with treatment with antithyroid drugs alone after a period of time, will usually be able to get this to rise if they take Acetyl-L-Carnitine but as I said, it needs to be watched and monitored and adjusted frequently.  I think in me it also lowered my Graves antibodies.
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    • Posted

      Ok thank you Linda! It was so much easier when I was stable instead of bouncing around! Let's hope I stay where I am for a while now:-)
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    • Posted

      Another question going cold turkey off the meds won't give me any side effects? I know with some things they tell you to ween off but I don't need my thyroid going hyper again, I feel good right now!
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    • Posted

      Yes when I said going off both I meant both types of Carnitine not the meds.  If you abruptly discontinue the meds or lower the dose too fast, you will get rebound effects and you don't want that.  With the carnitines, you can stop them, start them or lower doses without that problem.  However, I usually discuss my meds dosages and adjustments with my doc and he makes the decision about those.  Since he knows nothing about the supplements, I make the decisions about the supplements.
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    • Posted

      Thanks Linda! Yes I was talking about the cartinines not my PTU I did that before and that's when my hair started falling out! Never again! It's just now after almost 4 months of coming out to finally slowing down a bit! Hopefully I'm close to the end of the falling out stage!
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    • Posted

      You can stay on the regular L-Carnitine if you feel better on it.  I discontinued both of mine because when my results headed towards hypo, I was getting palpitations even with the regular.  If you stay on the Regular, you will not get the extreme swings that you do with Acetyl and you might prevent muscle problems.  If, however, you do not feel good on it, then discontinue.  It's the Acetyl you really have to be careful with and adjust doses.  Your lab results are very good right now right where they are and you do not want that to change which it would if you stay on the Acetyl.  I have seen patients on other Boards who went from very low TSH like 0 to a TSH of 9.0 in about 4 weeks on Acetyl.  Also would your doctor be willing to test your Graves antibodies now to see if they have improved?  I really think it was the Acetyl that improved mine.
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    • Posted

      Is that called thyroidperoxidase? If so mine were 402 and haven't changed since Janurary and my endo said since I have autoimmune that it wouldn't go down. That's all I know though .
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    • Posted

      As far as I know, thyroperoxidase or TPO indicates inflammation but isnot definitive of Graves disease.  Both Graves and Hashimoto patients can have elevated TPO because of the inflammation.  However, the tests for Graves are TSI and TRab.  You can tell your Endo he is wrong.  Both I and others have lowered their antibodies with the treatments we use.  I think in my case it was the Acetyl-L-Carnitine that lowered mine.  3 other people on another Graves Board lowered theirs and went into remission by using a Block and Replace regimen with low doses of Methimazole and Levothyroxine together.  One lady says her son has been in remission for 9 years and she has been in remission for 4 1/2 years.
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    • Posted

      Wow! Ok that's interesting ! I will have to check the rest of my results when I get home . There was another test but not sure what that was! I will get back to you .

      Thank you

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    • Posted

      The only other thing they texted for was thyroglobulin Ab and that was 43 then what I told you yesterday with the TPO being 402, but I should still quit both cartines unless I have symptoms and think I need them correct? I'm not sure why he didn't lower my does of PTU, maybe he knows I fluctuate too easy to hyper to hypo . I just know we are going on vacation for 2 months and I want to feel great for that! If I can stay where I'm at right now then I should be good!
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    • Posted

      Linda , my T4 went down this time .07 with range .08-1.8 and my TSH went to 3.29 from .02 but don't have a range on that one and my T3 went down from 3.1 to 2.2 with range 2.3-4.2, I stopped my L cartinine and acytle L cartinine about 3 weeks ago! Should I start using them again? My hair finally slowed way down and now with these results I don't want to start losing again! The dr kept me on 50 mg PTU twice daily still even though my levels changed! Really want to know about adding them back in and dosage! Freaks me out it changed, need advice! Thank you
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    • Posted

      So your doctor needs to slight lower your dose of PTU.  It is better to make small changes at a time in meds and you adjust your supplements.  You are now a little hypo.  Even though your TSH would be within the range of normal, you do not want the value that high.  Ideally if you can keep it between 0.70 to 1.5 is where you want it.  You can add back the Regular L-Carnitine but hold off on the Acetyl.  How are you feeling?

       

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    • Posted

      Besides being a little tired thru the day I feel pretty good. Sometimes my heart rate seems a little fast but not all the time . I wonder why he didn't tell me to change my meds? I really don't want to have another hair issue , I will call him Monday . What will the red L cartinine do when I add that back in?
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    • Posted

      Oh I have been having leg cramping again and I've been dizzy the last few days!
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    • Posted

      The Regular L-Carnitine helps your muscle pains but will not greatly alter your lab  test results.  So your lab tests if bending towards hypo will rise if you discontinue the Acetyl and the regular will allow that to happen.  I don't know why he didn't adjust your meds.  I would adjust them slight, even by 2.5 mg downwards.
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