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#1 andrew

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Posted 01 December 2011 - 07:57 PM

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After paramedics woke me from a hypoglycaemic coma eight months ago I ended up at an endo who noticed my goitre and diagnosed me with Graves. My free t4 was 72 and I had every symptom but a weak period. To make a long story short I'm now on Propylthyracil and have been for seven months. My dosage was 300mg/day at first but for the past month is [email protected] [email protected] and [email protected]
Today my Free T4 is 12, Free T3 is 6, and my TSH is <0.008 (this is too low I'm told) I feel OK but maybe a bit depressed. When my numbers got too low I felt like crap, and haven't been taking quite as much of this medication as my endo wanted. However, we are on the same page for the moment and she wants to see me in eight weeks. I am an insulin dependent diabetic with currently good control, Fifty years old, and this med is covered for me but Methimazole is not. RAI is free as is surgery as I am in Canada, but my gut tells me to just stay on these pills forever. My endo isn't in agreement, but for now is capitulating.
Am I way off course? She will probably want RAI right? How worried should I be about these rare side effects, and should I consider paying for Methimazole?




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#2 Christine

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Posted 01 December 2011 - 09:28 PM

Hi Andrew -

 

Could you please post the lab ranges for the Free T4 and Free T3? These lab values are different, depending on the country you're in, and I believe the top end of the Canadian Free T4 is something like 22 or so. Can't remember the Free T3 range up there. So, you are really hypothyroid, and this would explain the depression and every other sluggish symptom you are probably having.

 

If your endo did not immediately lower your PTU dose with such a low Free T4, it's pretty obvious she's "dosing on the TSH" which is the number one idiotic mistake these doctors make. She is waiting for the TSH to "come back up" and in most cases, the patient is extremely hypothyroid by then, if the TSH ever comes up at all. Many doctors do not understand anything about why the TSH is low even when the thyroid levels are way too low as well, but refuse to lower the antithyroid drug due to pure ignorance. If she would test your TSH receptor antibodies (the TSI, or Thyroid Stimulating Immunoglobulin), it would explain the low TSH. But it's amazing how many endos have no clue about this.

 

The TSH is a measure of the pituitary gland, and even tho it is part of a feedback mechanism to the thyroid, the antibodies that cause Graves' are tweaking it, causing it to be too low. Low TSH is supposed to mean hyperthyroid, but as you can see, your actual thyroid hormones (at least the Free T4, and most probably the Free T3 as well, since I don't remember the lab range on that in Canadian labs) are far too low at this point. You were given a high dose of the PTU to begin with because your Free T4 was so high at 72, but it is well past time to start lowering the dosage. She should have kept on top of that, testing you sooner, and started slowly lowering your dose once you dropped below the top end of the Free T4 lab range!

 

You need to call and tell her that your thyroid is way too low (since the PTU is doing its job) and explain all your symptoms. Tell her you need a dose reduction IMMEDIATELY, and follow up testing much sooner than 8 weeks--probably more like 2 weeks, depending on how you are feeling. After you start to settle in, every 4 weeks should do, and even further between labs as you stabilize at a good dose.

 

Ask her if you can change the dose to 25 mg every 8 hours, which should be about right. You need to taper down slowly, so quitting the meds for a few days might be suggested, but really isn't a good idea, since it might result in a rebound of the hyper levels (happens all the time).

 

If you continue with this 125 mg a day dose (which is apparently still too much which is why your Free T4 is still so low even after being on this lower dose for a month now), you will be so hypo, you won't be able to function, and that in itself can be dangerous.

 

I'm surprised that PTU is covered by your national insurance, but methimazole is not. Amazing! Many people prefer the methimazole to the PTU, but some people can't tolerate one or the other. Might be worth it to try the methimazole, even if you must pay for it, because there are studies that show it is more than likely a bit safer and easier on the system. The ratio is approximately 10 to 1, PTU to methimazole. If you are lowering your PTU to 75 mg per day, it would be equivalent to 7.5 mg a day of methimazole. Both meds are best taken split into thirds, taken every 8 hours as suggested by the drug manufacturers. You should ask for the 5 milligram pills for easier splitting.

 

You can get a good price at CanadaDrugs.com which is where I've been buying my brand name (Paladin) Tapazole (methimazole) since 2005, and I live in California. The Canadian brand drugs are far superior as far as I'm concerned, so you're lucky in that respect. Perhaps your local pharmacy may have comparable prices on it. You might do well on the generic methimazole as well, which is cheaper. I just prefer the branded because I got used to the original Eli Lilly brand of Tapazole (which was discontinued several years ago), and found I didn't fare so well on the generics. But we're all different.

 

As far as staying on the antithyroid drugs, I've been on Tapazole for over 32 YEARS, and have no problems with it whatsoever.

 


Please find out the lab ranges and let us know. That way you'll know just how low your thyroid levels really are, and those are what counts. At this point it's best to ignore the TSH, but continue to get it tested to make sure it doesn't climb too high, which it may start to do when you are very hypo.

 

Hope to hear back from you soon, and sure hope you can talk some sense into that endo. If she's arrogant and won't listen to you, then I hope you can find another doctor (doesn't have to be an endo). I've been with a family doctor for over 10 years, and he knows more about the thyroid than the endless number of endos I've been through in the last 3 decades.

 

Best Wishes,
Granny Chris



#3 Christine

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Posted 01 December 2011 - 10:04 PM

This is a great read. Very informative "lesson" on Graves' by Elaine Moore, who could run circles around any endo out there. Knowledge is power, so please take the time to read it whenever you get a chance, and you will be miles ahead of your doctor:

 

http://www.suite101....m/19330/seminar



#4 andrew

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Posted 01 December 2011 - 11:22 PM

After paramedics woke me from a hypoglycaemic coma eight months ago I ended up at an endo who noticed my goitre and diagnosed me with Graves. My free t4 was 72 and I had every symptom but a weak period. To make a long story short I'm now on Propylthyracil and have been for seven months. My dosage was 300mg/day at first but for the past month is [email protected] [email protected] and [email protected]
Today my Free T4 is 12, Free T3 is 6, and my TSH is <0.008 (this is too low I'm told) I feel OK but maybe a bit depressed. When my numbers got too low I felt like crap, and haven't been taking quite as much of this medication as my endo wanted. However, we are on the same page for the moment and she wants to see me in eight weeks. I am an insulin dependent diabetic with currently good control, Fifty years old, and this med is covered for me but Methimazole is not. RAI is free as is surgery as I am in Canada, but my gut tells me to just stay on these pills forever. My endo isn't in agreement, but for now is capitulating.
Am I way off course? She will probably want RAI right? How worried should I be about these rare side effects, and should I consider paying for Methimazole?



#5 andrew

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Posted 01 December 2011 - 11:31 PM

Hi Andrew -

 

Could you please post the lab ranges for the Free T4 and Free T3? These lab values are different, depending on the country you're in, and I believe the top end of the Canadian Free T4 is something like 22 or so. Can't remember the Free T3 range up there. So, you are really hypothyroid, and this would explain the depression and every other sluggish symptom you are probably having.

 

If your endo did not immediately lower your PTU dose with such a low Free T4, it's pretty obvious she's "dosing on the TSH" which is the number one idiotic mistake these doctors make. She is waiting for the TSH to "come back up" and in most cases, the patient is extremely hypothyroid by then, if the TSH ever comes up at all. Many doctors do not understand anything about why the TSH is low even when the thyroid levels are way too low as well, but refuse to lower the antithyroid drug due to pure ignorance. If she would test your TSH receptor antibodies (the TSI, or Thyroid Stimulating Immunoglobulin), it would explain the low TSH. But it's amazing how many endos have no clue about this.

 

The TSH is a measure of the pituitary gland, and even tho it is part of a feedback mechanism to the thyroid, the antibodies that cause Graves' are tweaking it, causing it to be too low. Low TSH is supposed to mean hyperthyroid, but as you can see, your actual thyroid hormones (at least the Free T4, and most probably the Free T3 as well, since I don't remember the lab range on that in Canadian labs) are far too low at this point. You were given a high dose of the PTU to begin with because your Free T4 was so high at 72, but it is well past time to start lowering the dosage. She should have kept on top of that, testing you sooner, and started slowly lowering your dose once you dropped below the top end of the Free T4 lab range!

 

You need to call and tell her that your thyroid is way too low (since the PTU is doing its job) and explain all your symptoms. Tell her you need a dose reduction IMMEDIATELY, and follow up testing much sooner than 8 weeks--probably more like 2 weeks, depending on how you are feeling. After you start to settle in, every 4 weeks should do, and even further between labs as you stabilize at a good dose.

 

Ask her if you can change the dose to 25 mg every 8 hours, which should be about right. You need to taper down slowly, so quitting the meds for a few days might be suggested, but really isn't a good idea, since it might result in a rebound of the hyper levels (happens all the time).

 

If you continue with this 125 mg a day dose (which is apparently still too much which is why your Free T4 is still so low even after being on this lower dose for a month now), you will be so hypo, you won't be able to function, and that in itself can be dangerous.

 

I'm surprised that PTU is covered by your national insurance, but methimazole is not. Amazing! Many people prefer the methimazole to the PTU, but some people can't tolerate one or the other. Might be worth it to try the methimazole, even if you must pay for it, because there are studies that show it is more than likely a bit safer and easier on the system. The ratio is approximately 10 to 1, PTU to methimazole. If you are lowering your PTU to 75 mg per day, it would be equivalent to 7.5 mg a day of methimazole. Both meds are best taken split into thirds, taken every 8 hours as suggested by the drug manufacturers. You should ask for the 5 milligram pills for easier splitting.

 

You can get a good price at CanadaDrugs.com which is where I've been buying my brand name (Paladin) Tapazole (methimazole) since 2005, and I live in California. The Canadian brand drugs are far superior as far as I'm concerned, so you're lucky in that respect. Perhaps your local pharmacy may have comparable prices on it. You might do well on the generic methimazole as well, which is cheaper. I just prefer the branded because I got used to the original Eli Lilly brand of Tapazole (which was discontinued several years ago), and found I didn't fare so well on the generics. But we're all different.

 

As far as staying on the antithyroid drugs, I've been on Tapazole for over 32 YEARS, and have no problems with it whatsoever.

 

Please find out the lab ranges and let us know. That way you'll know just how low your thyroid levels really are, and those are what counts. At this point it's best to ignore the TSH, but continue to get it tested to make sure it doesn't climb too high, which it may start to do when you are very hypo.

 

Hope to hear back from you soon, and sure hope you can talk some sense into that endo. If she's arrogant and won't listen to you, then I hope you can find another doctor (doesn't have to be an endo). I've been with a family doctor for over 10 years, and he knows more about the thyroid than the endless number of endos I've been through in the last 3 decades.

 

Best Wishes,
Granny Chris



#6 andrew

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Posted 02 December 2011 - 12:34 AM

Thank you for your kind response Granny Chris.
In Canada the free T4 range is 9 to 24 (12) and the free T3 range is 3.5 to 6.5 (6)
So the free T3 is not low but perhaps the Free T4 is low for me.
I sure felt great at first. I felt so good I ended up with a hernia. So I went to the world famous Shouldice Hospital where all they do is hernia surgeries. I was told not to return until I lost 10 lbs. I said I just put on 10 lbs in 5 weeks due to ptu! So I went on a serious exercise and weight loss regiment. Went from 198 lbs to 186 lbs (5'-10") and returned to the hospital after 6 punishing weeks of this and they never got back to me. So I called the hospital, they said "you didn't get the letter?" They refused to operate on me due to the resent coma (which they knew about anyway) This was about the time my levels were dropping and as I stopped exercising 5 hours a day I crashed and put those 10 lbs back on and started questioning my endo. My weight is stable under 200 lbs. I had laparoscopic surgery in a real hospital. Did I mention that endo had my drivers licence taken away for 5 months after the bedroom coma precipitated by poor diabetes management and wildly out of control graves, for which I lost my job, which, until now I couldn't do regardless as I couldn't lift before or after hernia surgery. Now that I can work six months later my boss isn't sure if he can give me my job back. He'll let me know...
I'm not sure if feeling a bit down right now isn't warranted by my situation. Please let me know what you think.



#7 Christine

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Posted 02 December 2011 - 09:23 AM

I'm transferring this to the discussion section - will put your name in the subject line



#8 Thomasd

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Posted 17 January 2012 - 11:05 PM

Good luck Andrew...I'm overwhelmed by all there is to know and learn from this Graves disease..I am a 55 year old male and was recently diagnosed with it myself. They wanted me to go see a specialist in Seattle and do the RAI, but from what I gather thats the one thing I will never do. I did the small dose and the scan, before hearing that was obsolete and unnessary.I agreed to do drug therapy, but so far havent started anything yet. IT ALL sounds bad and I sure wish you the best. I am just trying to learn all I can as fast as I can.



#9 andrew

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Posted 04 February 2012 - 10:35 AM

So I have been taking 125 mg ptu (50 + 50 + 25) and feeling very sad all of the time and waiting the two months to see the endo again feb 2 but gave up as I had also gained weight (now 205) depressed as hell, without work, hiding in my room all day, so in desperation I decided to lower the ptu to 100 mg ptu (50 + 25 + 25) on Sun. Jan. 8 and did the blood work I was to do before my Feb. 2 appt. on Fri. Jan. 13, and began feeling better and so, for a couple of days, thinking more is better, I lowered my dose to 75 mg ptu (25 + 25 + 25). After a couple of days at that dosage I started to notice symptoms of hyperthyroid (heart pounding, itchy skin, rash, lower sex drive) so I increased the dosage back to 100 mg ptu (50 + 25 + 25) and I am feeling fine (thank god)

 

My depression is gone as if by magic, even though nothing has changed in my life, and I was convinced that my numbers would confirm everything. However, when I saw my endo on Feb. 2 I got the results. My Jan. 13 thyroid levels:

 

TSH still < 0.008
Free T4 15 (9 to 24)
Free T3 7.4 (3.5 to 6.5)

 

These result are for 6+ weeks at 125 mg ptu followed by 6 days at 100 mg ptu, so on Feb. 2 , I was sent to have more blood work done as I will have been at 100 mg ptu for 4 weeks by then (except for 3 days at 75 mg). I will go back on Tuesday Feb. 7 for my results. These results will obviously show that my Free T3 will be higher than 7.4. However, I feel fine, am not gaining weight, and slightly itchy skin on my back is the only symptom I am aware of, however my endo says my depression is likely unrelated to my thyroid levels, and she is going to want me to increase my dosage of ptu back to 125 mg./day (maybe even 150 for a while) I will update again on tuesday, after I see my endo.

 

Question-- how far out of range is safe for my Free T3 if I feel best, but am out of range?



#10 mmztcass

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Posted 04 February 2012 - 04:30 PM

Andrew:

 

Reminder...use the regular discussion forum as the personal stories here are just for those with successful thyroid stories only.

 

Thank you! :)

 

P.S. Thanks to Chris for bringing Andrew's latest post over to the discussion forum.







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