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Old 11-28-2011, 08:27 AM   #16
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Re: Long term treatment options for Hyperthyroidism/Graves?

Hello again, I saw my GP today and it went well as far as I can tell. My bloods as of the 2nd of Nov were;

TSH 0.01
FT3 9.5
FT4 21.2

He said the normal ranges were; TSH .38-5.5, FT3 3.5-6.5, FT4 10-18. I did have another set of bloods done on the 17th of Nov but he doesn't have these results (other than FT4 of 25.6 that was mentioned in my letter from the endo) as they were done at the hospital. Don't know why that has gone up by 4 in 2 weeks though. He said they should be aiming for the middle of the normal range.

He said I was close to being in range and has asked for more bloods to be taken in 2 weeks time. If I'm in range by then he's happy for me to lower my dose to a maintenance dose of 5mg-20mg. He said I might be happier doing the titration method and not taking the Levothyroxine at all, just a lower dose of the Carbimazole. I think I agree but need to do a bit more research before committing to it.

Regarding a new endo he said I should go to my appointment on the 5th of Jan as planned and if I still want to change he'll refer me to someone else. I also phoned the endo's receptionist to pass the message on about me not taking the Levothyroxine and she had a bit of a go at me for not following doctors orders . I said I wanted to look into the titration method as this sounded better for me. She said she'd pass the message on so I'm guessing I'll get a call from him later.

Does this all sound about right?

Sam

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Old 11-28-2011, 09:27 AM   #17
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Re: Long term treatment options for Hyperthyroidism/Graves?

As you will note from your Nov 2 labs, your FT4 level was very close to being in range. There is no way your dose should have been increased to 60mg.

Since 40mg is a very high dose, you probably should have been brought down to 20mg after those Nov 2 labs.

There's no way of knowing if the hospital labs represent an increase in your FT4 without seeing the ranges the hospital lab uses. Many hospital labs use different ranges and your result can only be interpreted within the context of each lab's ranges.

A mid-range treatment goal will most likely leave you with hypo symptoms. Most people need their FT4 level in the upper third of the range, if not higher.

I think you should talk to the doctor about going down to 20mg, tops. Even that might be too high but, since you've been taking 60mg, I think going down any more would be a shock to your system.

And, quite frankly, based upon the labs you now shared, I think you might already be somewhat hypo (low-in-the-range FT4) after taking 60mg for as long as you did.

Just to give you some idea re proper dosing, my FT4 level was higher than both of your recent FT4 levels and my starting dose was 10mg. (we'll forget about the fact that, after my levels got into range, the doctor overmedicated me moving forward)
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Old 11-28-2011, 11:04 AM   #18
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Re: Long term treatment options for Hyperthyroidism/Graves?

So do you think I should go back before the next set of bloods on the 12th of Dec? I can't see him wanting me to lower it without seeing that I'm in range, and there's no way I can get bloods done sooner because the nurse is always busy. He's also not an endo so I think I've put him in an awkward position going against the endos recommendations.

Or should I just lower it to 20mg myself without discussing it with them?

Sam

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Old 11-28-2011, 11:13 AM   #19
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Re: Long term treatment options for Hyperthyroidism/Graves?

Since I am not your doctor, it really isn't appropriate for me to tell you what you should do.

The information I share with you is based upon my research, personal experience and what I've learned in the 4+ years of thyroid forum participation.

I don't know what kind of relationship you have with your GP but, based upon your recent symptoms report alone, I'd be inclined to ask for labs now and go from there.

I'm not sure if you had the opportunity to look for that online course about hyperthyroidism that I recommended.....it has guidelines re starting dose and lowering the dose.
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Old 11-28-2011, 12:04 PM   #20
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Re: Long term treatment options for Hyperthyroidism/Graves?

I understand what you're saying and that's fine.

My GP is great, really nice guy and is a brilliant doctor. The problem is the surgery covers a wide area so appointments are tricky to get at short notice. There's no way I'll get the labs done sooner than the 12th and to be honest I'm lucky to get them done that quickly.

I found the website you were talking about but there's so much info on there I had trouble navigating it. I'll take another look later tonight.

I think I will lower my dose to 20mg for now and see what my results say on the 12th. Otherwise I'm likely to overshoot and be hypo by the time I get them done. 20mg seems to be the top end of the maintenance dose so I should be alright until then. In theory anyway!

Sam

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Old 11-28-2011, 12:26 PM   #21
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Re: Long term treatment options for Hyperthyroidism/Graves?

I'm glad you can appreciate my position.....and, I'm also very happy for you that you have a good relationship with your GP.

I do think you are making a wise decision in going down to 20mg. And, truly, that is not the high end of the most common maintenance doses - 10mg is.

Since your levels were still a bit over-range and you are new enough to Graves' that antibodies might still be a factor, 20mg does seem appropriate until you get labs.

Getting labs on Dec. 12th will accurately reflect just what the 20mg accomplished.

Re the course: Look for lesson 6 - conventional treatment options - introduction.....and read page 2 of the anti-thyroid drugs section titled "dosage". You'll find the information to which I refer.

Best of luck to you moving forward - please keep us posted.
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Last edited by sammy64; 11-28-2011 at 12:31 PM.

 
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Old 09-03-2012, 06:59 AM   #22
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Unhappy Re: Long term treatment options for Hyperthyroidism/Graves?

Quote:
Originally Posted by sammy64 View Post
Happy to help. Thyroid forum members helped me so much that I'm here to pay that forward.

Your endo sounds like my first 3 endos. The remission rate is well-documented.

Clueless doctors are the ones that often make remission difficult for the patient. I just don't understand why some doctors give us a limited amount of time to take anti-thyroid drugs and then want us to have a permanent treatment.

Do they do that for patients dealing with blood pressure issues? And, then, if BP isn't controlled with meds, do they suggest removing the heart? Same concept with diabetics.

The thyroid is a vital gland - it's the victim of an antibody attack. Why remove a vital gland when meds can help heal it as well as the immune system? (anti-thyroid drugs lower antibodies)

Remission can be permanent as long as the patient isn't exposed to the triggers that caused the disease in the first place (excessive stress, hormonal changes as those that occur in pregnancy and menopause, etc.) Remember, remission means absence of disease, not a cure.

If a person comes out of remission, another, shorter round of anti-thyroid drugs is all that is usually necessary.

20% of Graves' patients go hypo after remission. (that's where I'm at) Sometimes the hypothyroidism is temporary...sometimes it's permanent.

Now, many Graves' patients go hypo because our doctors overmedicate us with anti-thyroid drugs. That's why it's so important to monitor our blood levels and be proactive with our care.

While my information comes from a variety of sources (thyroid textbooks, books written by endos, medical journal articles as well as information shared on thyroid forums over the past 4+ years), one of the best resources for information about Graves' is a book called "Graves' Disease - A Practical Guide".

Now that you've confirmed your dosing schedule, I advise you to change it. What I am suggesting to you is listed in the prescribing information for methimazole (carbimazole metabolizes into methimazole)

I suggest that you divide your dose into at least 2/day.

You see, methimazole has a 6-8 hour half-life. This means that half of the dose is used up withing 6-8 hours of taking it.....and the entire dose is used up within 12-16 hours of taking it.

When we do once daily dosing, our thyroid hormone levels drop a lot after taking the dose....and they start to rise once the dose starts to wear off. Then, our bodies are on their own for the 12-16 hours there are no meds the system.

Dividing the dose provides for more even "coverage" and more steady thyroid hormone levels. Steady thyroid hormone levels feel better and they bode best for healing.

Doctors don't make things easy for thyroid patients but, it is entirely possible to heal from Graves' and feel good in the process.
So If I'm taking 5mg 1x daily of Tapazole @7pm my body is running on empty after say 10 am till the next pill?? LOL..how do u split a tinny pill..

 
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