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.
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.
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?
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.
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.
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.
I can honestly say I made the right decision in having surgery. I put in the most miseable year of my life thinking I was slowly going mad. it was overwhelming at times and I actually looked forward to having the surgery! My wound never bothered me one bit, it is slowly fading and I massage bio-oil on it everyday. I feel calmer and more in control. The nicest thing for me was going to bed and sleeping the whole night through! I found it a very lonely illness, you looked ok and even lose weight so people tell you are well you are looking! The anxiety has lessened. I am not 100 % yet but will get there. Good luck with your surgery. Watch out for tingling. Feel free to pm me anytime
And there is the debate as to why dont you keep your thyroid. Its your decision at the end of the day. I was on carbimazole and it made me even sicker. I changed to PTU and had problems with my white blood cells. I didnt like the idea of staying on anti-thyroid meds forever due to effects on liver. Get yourself well advised and do what is right for you.
Unfortunately the way doctors treat this illness is outdated and the push for RAI and thyroid surgery is awful. They do not know how to prescribe the meds, and there is a lot of new information on treating the disease with supplements as well as antithyroid meds. When I just followed doctors orders the first year, my results stayed static. Then I did my research, added L-Carntiine and then Acetyl-L-Carnitine and vitamin D as well as Magnesium to my treatment regimen and I went into remission. Have my own thyroid working very well now. The push for the other two therapies is the result of Big Pharma who is making big bucks on Synthroid thyroid replacement. Almost 1 billion dollars a year to be exact.
I have been on a low dose of methimazole for 8 years now and have had no liver abnormalities or blood count abnormalities and at low doses, no side effects. People get liver abnormalities from the disease itself and from the antithyroid drugs if on high doses. Doctors can get just as good results on lower doses, there are medical papers written on this subject, but they are not willing to learn or change.
Thanks for the support. It helps having someone who knows what they are talking about.
I made the decision that I wasnt going to stay longterm on carbimazole as it was wreaking havoc on my body. It made me twice as sick. Everyone is different and some can tolerate it better. Longterm use worried me
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!
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?
Hi Linda
I had a look in the pharmacy yesterday and found L-Carntiine - really expensive over here. Just wonderring if theres anything to be allergic to. My adrenals showed maladaption stage 2 18 months back and I'm sure they are worse now as my sensitivity to perfumes etc has gone insane. My face is numb and I have tingling in my back, legs, buttocks, hands and feet. TSH remains in normal range but my bosy is in pain and I am having upset stomachs every other day. Doctor says I have multiple chemical sensitivity but the thyroid and adrenals must be causing this. What would you reccomend I take? L-Carntiine, Vit D and Calcium? anything else? cannot take any more of this. Cant work, go shopping, drive as I cant tollerate exhaust, perfume etc. Taking 2 x PTU 50mg daily and 2 x 10mg Propranolol daily. Regards Jeanette
I understand the surgery is a day case so you are home the same day so it can't be so bad. I'm considering it myself. Surgery is painless now and when it's gone you can get on with your life. I've had a lot of operations and some were major. It's no big deal. Please don't worry as I'm sure you will be fine.
My TSH was .943 with range .5550-4.780
My free T3 2.7 with range 2.3-4.2
free T4 1.07 range .89-1.76
When I saw the article, I asked my doctor to test my Carnitine levels because I did not want to have too much if I didn't need it but I was deficient in Carnitine and most people with Graves and hyperthyroidism are because they lose it from their muscles when their system is running so fast. Also, my TSH was not normal, it was 0 and I really wanted to normalize that. So I felt good on it until my values started heading towards hypo, then I did not feel good on it and had to stop it. So I don't really know the answer to your question. I would have the test done first to see what your levels are. I too am very allergic to dust and mold but right now there is nothing I can do about it except to keep rinsing my nose and as much as possible not be around it. Many people are deficient in Vitamin D and I had that tested and was deficient as well so for those two supplements that's what worked for me about taking them. The regular L-carnitine is not as sensitive as the Acetyl although the Acetyl did help raise my TSH, it just works too fast and raises too much if you are not on top of it monitoring and adjusting. What does your doc say about treating your adrenal problem? I heard some people take Ashwaghanda for that.
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.
Ok so stop both acetyl l-carnitine and L cartinine ?