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Old 05-17-2012, 02:12 AM   #1
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My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Diagnosed with Graves about two months ago after getting a goiter, plus some other symptoms. To diagnose, I got blood work, ultra-sound and nuclear imaging, or whatever. I have had hyPO symptoms most of my life, and been denied by docs and told I was just getting older, etc. and within "normal" range, so you can imagine my surprise at this hyPER diagnosis.

Over the past couple of months I have been taking my 15 of Tapazole split into two daily doses - 1.5 pills in the AM, 1.5 at dinner. I was very scared to start it but haven't had any major side effects other than a bad taste in my mouth and some notable hair fall. At first, dizziness.

I also pretty much cut iodine out of my diet as much as possible - no iodized salt, seafood, seaweed, etc.

A few days ago, I got back my new blood test results after having been on the 15 of Tapazole for about two months. They are as follows. Old numbers, from eight weeks (or so) ago's original blood tests, are in red:


Free T3: 2.86 (Reference range: 2.50-3.90) (Test eight+ weeks ago: 13.31)

Free T4: 0.75 (Reference range: 0.65-1.26) (Test eight+ weeks ago: 4.16)

TSH: 0.051 (Reference range: 0.340-5.60) (Test eight+ weeks ago: 0.037)

As you can see, I think I am now almost reaching hypo territory and have been feeling fatigue, body aches, etc. My head hits the pillow at 9 PM and I am out cold. Comatose.

She reduced my Tapazole down by a full 5 mg pill per day, which is good.

Mainly, I wanted to ask around here, since so many people know so much good info. and have a lot of life experience to share. My doc, who has been short with me in the past at times, told me the following at our last appt. and I feel the need to run it by to get another opinion:

1) THIS DROP IS NOT THAT SIGNIFICANT OR UNUSUAL - I was pretty happy to see that my numbers had dropped significantly, but she let me know that it is pretty much not a big deal and that it will possibly go back up next time. She said this happens more often than not. So don't get happy yet, she tells me. Um, ok.

2) THAT I WAS ON THE "MAXIMUM" DOSE OF TAPAZOLE AND THAT IS WHY IT MAY SEEM THAT IT DROPPED A BUNCH - Really? I was on 15 mg Tap per day. Maximum? I thought people took higher than this!

3) THAT IT MAY TAKE TWO YEARS FOR MY GOITER SWELLING TO GO DOWN - Ugh! Two years? I hope not!

4) NOT TO WORRY ABOUT GETTING PREGNANT ON TAP IF MY DOSE IS LOWERED ENOUGH - Really? Because I read that it causes serious birth defects, and they didn't indicate that this is only true on very high doses. So huh?

5) THAT MY ANTI-TPO AND TG NUMBERS NO LONGER MATTER, NOW THAT I HAVE BEEN DIAGNOSED WITH AUTO-IMMUNE DISEASE - I had asked to have those retested and she flat out didn't do it! She said, "we don't focus on that as endocrinologists after testing it once and it probably will never change." Really? How can this be?

6) THAT DIET DOESN'T REALLY MATTER IN MY SUCCESS - I told her that I have gone whole hog and given up gluten and greatly reduced my iodine consumption. Her answer? That doesn't have an effect. Go out and get yourself some fish now.

7) THAT I MAY HAVE ISSUES FINDING AN ENDOCRINOLOGIST BACK IN THE US - Though I am currently in Asia, she has worked in the US for several years. Told me the waiting lists are long for an endo and it may be 3-6 months before I "get in." What am I going to do? According to her, I will need to see someone every two months for the next year. How can I do that if I can't "get in?" She said it's due to the diabetes cirsis in the US.

She has been rec'd to me several times over now as the "best" endo in this large Asian city that is reknown for its docs...but not sure I am impressed yet. Plan on sticking with her until I go back to the US though b/c at least she knows my history now.

THANK YOU A MILLION TIMES OVER for any help or advice you can provide on clarifying the above statements! I am in dire need of it, obv!

Good luck in your own health,

Pazoodle



------------------------------------------------------------------------


For reference, my first post here was as follows, since I started a new one here:

Hello,

I am from the east coast of the US but moved to Bangkok about eight months ago for work reasons. I chalked up my out of breath feeling and fatigue to the 100 degree heat with 100% humidity. However, I then developed a small goiter which was discovered by my acupuncturist at a session (I successfully use it for migraines which I have had since I was a child). My thoughts were that I was hypo, b/c I have had light to moderate hypo symptoms for years including intolerance to cold, always being cold, very low blood pressure, edema in feet and ankles, 10-15 lbs overweight and couldn't lose this weight even with a personal trainer, foggy headed, bad memory, "swollen" or bloated feeling, dry skin patches randomly that would not respond to lotion, fatigue and drowsiness. I was scared away of investigating this b/c went to the doctor for blood work once, telling her I was sure I was hypo, and she said I was just fine and it was a normal part of being in my 30s...blood tests were in normal range, she said. And I got the old, "join a gym!"...

Here in Bangkok, upon discovery of my goiter, I went to a woman described to me as the best endocrinologist in the city. She took one look at my slightly shaking fingers and said "Graves" but ordered blood tests and a radioactive scan. I asked if it could be a hyper phase of Hashimoto's, based on my history of hypo symptoms and she said absolutely not, it is def. Graves and the scan would confirm that. She also put me immediately on beta blockers. The bloodwork came back as follows. Normal ranges in parentheses:

Free T4
4.16 (0.65 and 1.26)

Free T3
13.31 (2.50 and 3.90)

Anti TG (Anti Thyroglobulin)
190.26 (0.0 and 4.11)

Anti TPO (Anti Thyroid Peroxidine)
538.61 (0.0 and 5.61)

TSH
0.037 (0.340 to 5.60)

The radioactive iodine uptake (or whatever) scan I had last week came back as fast/hyper. She just RX'd me 15 of Tapazole daily to be taken all at once in the morning. I said, "with or without food?" and she said, "I don't know what to tell you, I am not a pharmacist, I am an endocrine specialist." ...and briefly described the side effect of "getting a fever / sore throat" and said if that happened, get to the ER or I could die. Christ.

I have no eye involvment that I can detect.

Does this all sound normal/typical? It is a bit confusing for me because I sleep like a baby and actually suffer from low appetite. My heart rate was higher than normal though...for years I have suffered from low blood pressure so this is a real departure for me.

Any advice on how to take these meds, and what to expect, would be much appreciated! It can be a bit difficult dealing with all of this when you are out of your own culture, or element, so to speak.

TIA!

Last edited by pazoodle; 05-17-2012 at 03:01 AM.

 
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Old 05-17-2012, 02:56 AM   #2
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Oh shoot! I forgot to mention something else she said that I found questionable.

I said, well, isn't it better to split up the pills throughout the day for maximum effectiveness? And she said, NO - TAPAZOLE HAS A VERY LONG HALF-LIFE SO JUST TAKE IT ALL IN THE AM AND IT WILL LAST TIL YOU GO TO SLEEP. Really? Because maybe my understanding of "half-life" is not as advanced as a doctor's, but I think I read that the half-life of Tapazole was 6-8 hours...and I usually go to sleep at least 12 hours after I wake up in the AM. At least. So by my calculations, that leaves a good 4-6 hours of awake time, plus all my sleep time, where I am not being medicated for my hyper!

 
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Old 05-17-2012, 03:02 AM   #3
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Oh hey, here's the other part! I have also asked her to give me that one test that can supposedly confirm/deny the presence of Graves antibodies, to give official diagnosis...she said she feels confident with the Graves diagnosis now, esp. after nuclear test, and that I don't need that blood test. So I have actually never gotten it.

 
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Old 05-17-2012, 05:56 AM   #4
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

It's really too bad that your doctor didn't check you for the Graves' antibodies because the two antibody tests you did have point to Hashi's, the most common cause of hypothyroidism.

It's entirely possible that you are in a hyperthyroid phase of Hashi's.

Bottom line, we take the appropriate meds for whatever state our thyroid is in.

As you well recognize, much of the information the endo provided is wrong - including that about once daily dosing and the thought that Graves' can be confirmed with anything but the TSI blood test. Misinformed endos is a worldwide problem.

Now, dosing for hyperthyroidism is always based upon the FreeT4 level, regardless of TSH. The goal is to have the patient take the lowest possible dose that will maintain the FreeT4 level in the upper half of the range (if not towards the high end of the range), regardless of TSH.

That said, with your FreeT4 level near the bottom end of the range, 15mg was obviously too high for you as a starting dose. Going down to 10mg isn't enough of a dose reduction.

Once a hyperthyroid patient's FreeT4 level gets back into the normal range, the starting dose is usually halved and then the patient takes what is called a maintenance dose.

The most common maintenance doses range from 2.5 - 10mg with the patient taking decreasingly lower doses.

It's clear to me that your dietary changes had quite the expected impact and this lessens the need for a higher dose of Tap. (the endo is again wrong - this time with her comments about dietary influences)

I doubt you would need a dose higher than 5mg right now - I hope you can talk to the doctor about this because your FreeT4 level is hypo.

Being hypo can cause an increase in antibody production since it's stressful on the body. Well, antibody production is what got us sick in the first place.

And, you really need to get labs every 4-6 wks. until you go into remission. We can heal that quickly. An endo is least likely to provide the proper care since many of them haven't kept up with the advances in thyroid care.

Your best bet could very well be a GP in the form of a DO, internist or alternative MD.
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Last edited by sammy64; 05-17-2012 at 05:59 AM.

 
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Old 05-20-2012, 10:24 PM   #5
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Thanks so much for the helpful advice. For reasons I can't get into here, I am stuck with this doc, and her "five star" hospital until I leave this particular country and move on to the next. I am hoping she has not messed me up too terribly - I am feeling these hypo symptoms worse, I think, than I ever did with the hyPER symptoms. And I don't feel that it is time to change my diet back...I want to stick to the current fairly strict one I am maintaining (very low iodine, no gluten, lots of raw fruit and veg, no processed foods)...even though she commanded me to go out and eat some fish now.

Though she shook her head and said, "no, no, no" when I asked if I could split my current Tapazole mg's into a 5 mg twice a day dosage instead of taking all 10 mg at breakfast (claiming that Tapazole has a very long half-life - ???)...I am splitting anyway. I felt some weird side effects from taking the full 10 mg at once with breakfast - swollen hands and a sick feeling in my stomach being among them.

 
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Old 05-20-2012, 10:26 PM   #6
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Also, after the extreme low that I quickly went down to on the Tapazole, I still have to wonder if I actually do have Hashi's. But I guess I will have to wait until I get back to the US, since she refuses to give me the antibody tests.

 
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Old 05-20-2012, 10:29 PM   #7
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Another thing - my cycle was absolutely normal all the way through my symptoms leading up to diagnosis and my initial diagnosis with Graves'...but as of this month, as of being on the Tap for a month or more, I have developed extremely heavy - and irregular (over two weeks late this time) periods. First time in my life EVER having to endure that.

 
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Old 05-21-2012, 05:18 AM   #8
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

Tapazole does have a longer half-life than some other meds but, it doesn't have a long enough half-life to provide all-day "coverage". The prescribing information shows that it's supposed to be taken in divided doses.

The experiences you had after taking it on a once/daily basis were most likely caused by the fact that it sent your thyroid hormone levels too low after the dose and amplified your hypo symptoms.

I know you're wondering whether or not you have Hashi's but, thyroid treatment is always based upon thyroid status. You were hyper when you started Tapazole and you probably still need it - just not in such a high dose as the doctor is telling you to take.

The issues you describe with your period are typical ones for someone with hypothyroidism. I suspect you have more.

Unfortunately, the problems you are having with your doctor are similar to the problems thyroid patients worldwide have with their doctors. Mismanagement of thyroid disease is rampant.

Best of luck to you negotiating the proper care for yourself.
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Old 06-11-2012, 02:14 PM   #9
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Re: My Update Since Being "Newly" Diagnosed with Graves, 8 Weeks Ago

I feel you frustration I have dealt with my Thyroid for three years now with a misinformed doctor who did not tell me much. I have Graves and Hashimotos and am hyperT right now and have very similar symptoms as you.

 
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