Can I run this past you for comments.

[Vbgr]

Overactive multi nodular thyroid. Now on third month of 40 CMZ a day with beta blockers. TSH 0.01 ranges 0.27 - 4.2. T4. 22.2 ranges 12 - 22

Dr would not agree to reduce my CMZ . He will test me for Graves when I next have my blood tests in six weeks. He says my T4 will then be 17 and he expects my TSH to have risen. If I do not comply with this he will not be responsible for me. I have asked for titration instead of block and replace and have asked for this as I feel a synthetic hormone cannot be as good as the natural one I produce. Please give me your expert advice as I am worried. Thank you Val

[Nanaedake]

I don't know anything about Graves disease but I understand that when Levothyroxine is in your body, it is chemically indistinguishable from your own thyroid hormone.

[Clutter]

Vbgr,

You are not taking synthetic hormone. You are taking anti-hormone medication to stop you producing excessive thyroid hormone. Your GP is right not to reduce your Carbimazole dose while your FT4 is still over range.

I told you previously that you are on Carbimazole titration. Block and replace is Carbimazole to stop thyroid hormone production plus Levothyroxine to replace thyroid hormone.

[Vbgr in reply to Clutter]

Sorry Clutter I did not explain properly, the synthetic hormone would be what they would give me in block and replace. It would be the replace part. From six weeks ago I dropped 26 points on my T4, is it possible with the 40 CMZ I will get near loosing the same over the next six weeks to my next blood test.

[Clutter in reply to Vbgr]

Vbgr,

I don't think you can assume you will drop another 26 points but your Carbimazole dose will need titrating when your FT4 drops to/below 17 as your GP told you. If your endo or GP suggests block & replace tell him/her you prefer to stick with Carbimazole titration.

[helvella Administrator Thyroid UK]

And if your TSH isn't 17... ?

You give me the impression that if it is higher, he will blame you for not continuing to take the carbimazole.

TSH often takes quite a while to rise even when FT4 and FT3 have dropped. This can take many months in Graves - I don't know if that also applies to multinodular thyroid.

[Joy333]

Hi if you are doing the titration method your carbimazole should've been lowered by now, 40mg is a very high dose with your t4 levels where they are and you seem to have responded well to treatment but carbimazole now needs titrated or you may be at risk of becoming hypo on 40mg.

I would suggest contacting your endo secretary to discuss your concerns and wish to use titration method instead of block and replace and to pass on your current t4 levels. TSh takes a long time to budge, mine took years so just concentrate on t4 levels and where on the range you feel at your best.

[Vbgr in reply to Joy333]

Hello Joy, my doc has refused to lower the dose. I told him I wish to have the titration method. He says T4 will go down to 17 by the time I have my next blood test in 6 weeks. My Endo has now left the hospital as he finished his year of training , is a consultant in Bath now. I feel as though I am being railroaded into something I don't want. It is awful to feel so helpless. Also what if my T4 does go down as the previous 6 weeks, 26 points lower than the 22 I am now to minus 4. Unfortunately, I do not know if this can happen or not. Sleepless nights! Thank you for replying Val

[Joy333 in reply to Vbgr]

My goodness Val I understand your predicament. Did your endo not transfer your case to another before he left? I would've thought your gp should be seeking advice from an endo.

I can only share my own experiences of titration, if my t4 levels were where yours are at the moment I certainly wouldn't be on 40mg for another 6weeks. As you say your gp must be planning to add in thyroxine to keep you on such a high dose but I understand this isn't what you want.

It should really be an endo dealing with your care when hyperthyroid. Can you either phone endocrinology dept or ask your gp to refer you again? Or make an appt with another gp?

[Vbgr]

Hello Joy, many thanks for your interest. I have written to my doc and asked that he monitor me to get me on titration safely. Not block and replace which I feel is where he may go. I have an Endo appointment end of September, but that I feel will be a little late for me.

[Hidden]

I know nothing about the medication you are on, but as you appear to be relatively well with your multinodular goitre, I don't think you need to worry too much at this time.

It is, however possible that the goitre will develop into a monster, as it did for me, and then you really will have something to complain about. This development could endanger your life and the only answer would be to remove it all and then start on levo, unless you are prepared to do your own thing and go for the NDT or T3/T4 treatment.

Be happy and rejoice if the current medication is keeping your problems under control.

[Vbgr]

Sorry to hear that you have terrible problems after getting a huge goitre. After having the monster removed I presume you are on medication to bring you to optimum levels of hormone replacement to make you well again. Val