[clarinette]

in reply to: Confusing lab test results #1170344

[I wasn’t familiar with cynomel, but I did a quick search, and it appears to be related to Cytomel, which is used in the U.S. and is a synthetic T3 product. Most of the block-replace studies I’ve seen have used T4 instead of T3, so this is worth asking your doctor about as well.

No matter where in the world we live, Graves’ is definitely a condition where we need to be very aggressive in understanding our treatment options, ask questions if needed, and become an active participant in our care![/quote]

Kimberly, thanks for this useful insight – you are absolutely right, but I had never realised before that Cynomel is a T3 product, and of course this explains why the T3 results went up, then down again when the dosage was reduced.

As you say, a bit of adjustment of the drugs would seem to be in order, and maybe some T4 instead of T3. Unfortunately the endo I’ve had just doesn’t seem to respond to questions or suggestions, no matter how nicely I put them to her!

I’m starting to understand now that I need to be much more aggressive/assertive in this matter. First stop has been to get my lab tests done today, a couple of weeks early (my GP suggested this) and then I plan to get that second opinion, hopefully with an endo who will be willing to listen and explain.

[clarinette]

in reply to: Tenderness and fullness in neck #1170117

Hi CMoore,

Have you had your scan yet? I hope you get good news soon, if you haven’t already. How is your neck feeling today?

My neck often feels very tender too and throbs a lot, especially in the early morning, and I frequently have pain in my left ear as well, although I’m not sure if this has something to do with the thyroid, or if it’s just a coincidence.

I’ve had Graves for just over two years and I’m a new girl on this wonderful forum. Some of the facilitators have replied to my posts with some very interesting and helpful insights and comments. However, I’m not American, I’ve lived in France for most of my life (since 1980) and I’m having trouble understanding some of the jargon. I’d like to understand more about your treatment and syptoms, and at the risk of sounding really dumb, could you tell me please, what is PTU? What are pvcs? And what is an uptake scan? Treatment seems to be very different over here and all these are things I’ve never heard of….

[clarinette]

in reply to: Confusing lab test results #1170352

I feel this has been a big day in the history of my Graves’ Disease.

Apart from finding this website and forum, which is brilliant, my GP is keen for me to get a second opinion and I’ve had two new endos recommended.

When I Googled one of them I found that he had participated in writing a very interesting paper (it’s in French, but if anyone is interested I will gladly send the link) which is basically a set of guidelines and professional recommendations commissioned by a national professional body and written by docs (but in clear, easy to understand language) for endos all over France. Exclusively concerning diagnosis, prevention and treatment of hyperthyroidism in adults, it describes all manner of patient profiles and which tests and treatments are recommended in each case. It includes a section on “conflicting” results, such as mine. T3 toxicosis is also discussed, so I read about this for the first time just prior to reading about it in your post, Healingcc. (Not that this appears to be my problem in view of the FT3 results I’ve mentioned above). I need to read the paper more thoroughly to find out what different treatment possibilities could be proposed to me.

[clarinette]

in reply to: Confusing lab test results #1170351

Many thanks again Snelsen and a big thanks too to Bobbi and Healingcc.

Now, you have indeed given me a lot to think about and I really appreciate all of your input. Forgive me if I don’t answer all of your questions straight away – they are all relevant and important to me and when I get the answers I feel that together we will be able to get some more pieces of the puzzle in place! The reason for the delay is that I’m having a little trouble “translating” some of the American terminology, so I need to return to my American tome on the subject to make sure I have an accurate idea of what you’re talking about.

Meanwhile, regarding FT3:

I have been tested for this but didn’t include my results in my first post because I had been led to believe that T3 is not so important (and I thought my post was already too long!). The results show that it was well within the normal range for the first couple of months following the initial diagnosis, then it went slightly above normal soon after I started taking the Cynomel (the thyroid hormone pill, which was introduced a few weeks after the start of the treatment with the antithryroid drugs). The FT3 then remained slightly high for about 10 weeks (the highest it reached was 8.68 (normal range 3.1 – 6.5)) and went back to normal shortly after the dosage of Cynomel was reduced a little. So not much to go on….

Snelsen, when you say “the block and replace method”, do you mean the combination of the anti-thyroid drug (I’m guessing this is what you refer to as ATD?) with the thyroid supplement? This is the ONLY method I’ve heard of over here in France, apart from surgery. I have asked the doc about radioactive iodine (that must surely be RAI in thyroid-speak!) but she said that it is hardly ever used in France.

Bobbi, your comment on the TSH lagging behind is certainly worth keeping in mind and useful to know. I understand about the symptoms being subjective too – actually it would probably help if I stopped thinking that my thyroid is the source of all my woes and focussed my energy on finding solutions!

Healingcc, that is really interesting info about antibodies and how they may stimulate or suppress – could explain a lot of things!

God bless you all.

[clarinette]

in reply to: Confusing lab test results #1170346

Snelsen,

THANK YOU SO MUCH for your very comprehensive and sympathetic response to my post. I’m off to my GP this morning to discuss all this further; he is very supportive and a good listener, unlike the endo.

I’m so glad I discovered this forum.

[Author]

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