surgery tomorrow or do i cancel

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Need help ASAP

I am due a total thyroidectomy tomorrow and am terrified, i am scared to leave my children, terrified

Something during the op will go wrong, such as a thyroid storm or bleed, i have never had a GA before. Terrified about my life afterwards being hypo etc.

My background is i was diagnoised graves last May, i have a large goite which does not bother me at all, my other symptoms were tremors, anxiety, palpatations and weight loss. It took a long time to

respond to the meds and i am now on 60mgs carb and it was only in my last blood tests that my levels were in normal range. Physically i feel very well and dont have any symptoms.

My endo thinks surgery will be inevitable but i just dont know what to do. Can anyone help?

Oh i ruled out RAI.

Thanks

0 likes, 31 replies

Report

31 Replies

Next
  • Posted

    Why can't you stay on the meds if you are feeling ok. Surgery may be inevitable eventually, but why go through it until you really have to. I was diagnosed with Graves in July 13, and admittedly settled very quickly once I took the carbimazole. My doc suggested I had RAI but I said "no, what is the point of upsetting the status quo" and he agreed. He said that a while back, doctors thought carbimazole was dangerous, but they now realise that that is not the case and said he totally agreed with me. I certainly would not rush into anything until it was absolutely necessary.

    Tracy

    Report
  • Posted

    Thankyou.

    Just wanted to share my latest results too

    TSH 0.01

    Free T4 11.9

    Free T3 3.5

    Report
  • Posted

    I am far from an expert on results, but your current results look relatively normal. Mine are TSH 0.12, T4 13 and T3 3.8, so if nothing else, you results seem to almost match my own and as we both feel fine, I guess that could be classed as 'normal'.

    Can you not ring your doctor and talk to him/her and say that you are having second thoughts and ask why you need to have the op so soon after diagnosis?

    Let me know how you get on.

    Report
  • Posted

    Hi I just want to say, firstly take a deep breath. No one here can make this decision for you. This you have to decide for yourself. What's right for one person isn't for another. I hope you weren't pressured into making this decision by doctors. Everyone is nervous, anxious and scared before surgery. And even more so when you have children you think about bad things. They do marvellous things nowadays in medical profession. And you have to be positive, for yourself and children. You have to do what's right for you, whether you go ahead or not. Maybe write down any worries you have and if you do go tomorrow talk to them before procedure and if still not 100% then tell them your not ready and changed your mind. Let us know how you get on :-)
    Report
  • Posted

    Screwball a tsh of 0.01 and 0.12 is big difference. Yours is normal. Hers is not. Her pituitary is still suggesting overactive and other results are obviously being controlled by medication.
    Report
  • Posted

    It sounds to me that you are not ready for surgery. If I felt that way, I would cancel it. The results of TSH 0.01 is not in the normal range which is why he probably is advising surgery. Also Screwball21's results of TSH 0.12 are also not in the normal range. I think this must happen to all of Graves patients because my TSH results were like that also. My TSH result came into the normal range when I added acetyl-L-carnitine to my medication which you get from a Health Food Store. If all your results are in the normal range and you have no symptoms on medication, then I would really question a doctor if he recommended surgery. I think he is recommending surgery because of your low TSH result.

    You can start the L-carnitine at a low dose of 250 mg a day and raise it to 500 or 1,000 mg a day depending on your lab results. Why have such a major thing like surgery when it is not necessary, when adding a supplement that is naturally present in your body when you don't have Graves and is not harmful to you would improve the situation. My endocrinologist is astounded at my results.

    Report
  • Posted

    I don't know if you have different norms in the UK but here in Canada the normal range for TSH in my doctor's lab is 0.30 to 4.00 so a result of 0.1 or 0.12 is still below the normal low end of the range. My last TSH was 1.08 on a dose of 5 mg of Methimazole. I stopped taking my Carnitine because the result before that was 2.4 while I was on a dose of 5 mg of methimazole and 500 mg of Acetyl-L-carnitine. I like to keep my TSH in the range of 0.80 to 1.4 so I adjust taking Carnitine or stopping it accordingly and I strive to get blood tests done once a month. If it starts going lower such that I see it is heading quite a bit lower, I will restart the Acetyl-L-carnitine at 250 mg this time.

    When I first added L-carnitine to my medications and my TSH rose to 0.05 (still far below normal), I was able to lower my dose of Methimazole from 10 mg to 7.5 mg and then to 5 mg. Hopefully, one day I can stop it altogether.

    Report
  • Posted

    Linda, Out of curiosity, how does a low TSH make you feel? Would you know that your TSH was low, for example, if you did not have a blood test carried out?
    Report
  • Posted

    No, as long as I am on methimazole, I do not feel the effects of the low TSH. But my endocrinologist says that it indicates that my thyroid is not working properly so it is indicating that my disease is active.

    I do note that when it is higher, i.e. over 1.0 that my eyes do not feel as dry or irritated though.

    Report
  • Posted

    Don't panic ! I had all those symptoms and more and ended up having the thing taken out. I was eating a baked potato the same night, never felt a twinge. A 3 hour op in my case as my thyroid so big they had a job to get it out, but although its a bit complicated, its not 'difficult' and there is a very high success rate.

    With the level of symptoms you seem to have there isn't that much of an option long term, but I've not regretted the op.

    HOWEVER - you do need to get the thyroxin dosage levels right afterwards. That can take some time and can be quite critical - I'm still learning about that 2 years on and its been a roller coaster ride, but it can be sorted and is mostly fine tuning. I take 160 ug approx. which involves cutting a tiny pill in half !

    So , my experience is that the op isn't a problem, but you need to spend a bit of time getting the dose right afterwards as there can be a large delay between cause and effect ( mine can be 2 weeks ! ) and its better out than in if its giving that level of problem!

    Don't be afraid to pester the doctor to get the dose right - they tend to leave you and move on and you need frequent checks on your levels although you soon get to realise if you are over or under and can alter the dose to suit.

    Stitches out after a few days.

    Good luck ... and free prescriptions :-)

    Report
  • Posted

    Most of what I hear from patients who have either their thyroid removed or radiation and then have to supplement with thyroxin never feel good again. Thyroxin is T4. I was told by a psychopharmacologist that Cytomel (T3) converts to T4 in the body but not the other way around. That is why patients on Thyroxin never feel as good as patients who take a combination of T3 and T4. Cytomel used to be very inexpensive but now is very expensive.
    Report
  • Posted

    Linda I'm sure I've asked u this before what are ur levels now and what and how much medication do u take for thyroid and graves. :-) I'm going to see my doctor shortly about the L-carnitine supplements.
    Report
  • Posted

    My most recent levels are TSH 1.05, (normal range 0.30 - 4.00) Free T3 is 4.4 (normal range is 3.5 - 6.5) and Free T4 is 14 (normal range is 9 - 23). Currently I have discontinued my acetyl-L-carnitine and am on a dose of methimazole of 5 mg daily.

    At the beginning of December I was on 500 mg of Acetyl-L-Carnitine as well as 5 mg of methimazole and at that time I had blood tests done in a different lab so their norms are slightly different. My values were TSH 2.43 (normal range 0.40 - 3.80), Free T3 4.9 (normal range 4.0 - 5.8), Free T4 13 (normal range 12 - 21). Because my TSH was the highest it has ever been, I discontinued the Acetyl-L-Carnitine but will restart it if my TSH falls to about 0.50. If I do restart the Carnitine, I will do so at a lower dose of 250 mg because this is very well absorbed by the body and very effective for raising the TSH.

    Report
  • Posted

    By the way, before I used the Acetyl-L-carnitine I had similar TSH results to yours and others who have posted on this board - values like initially less than 0.01 for two years, then up to 0.05, then up to 0.78 (when I added the Carnitine) and then dropped again to 0.12 when I could not get it for a year when our government banned it being sold in Canada. They have since lifted the ban because there is nothing harmful about Acetyl-L-carnitine taken in doses from 250 mg up to 1,000 mg a day (the higher doses tend to cause stomach acid problems though) but usually a normal dose is well tolerated.
    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up