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Old 03-15-2012, 08:19 PM   #1
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Question Newly diagnosed with Graves... never been sick with anything... what to expect?

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!

 
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Old 03-15-2012, 08:24 PM   #2
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Re: Newly diagnosed with Graves...never been sick with anything...what to expect?

Also, at this early stage, I have held off on starting on any supplements or herbal stuff because I've read it is best to balance things first. Is this true in everyone's experience? I did give up wheat, reading about the autoimmune connection with thyroid disease, two weeks ago and, since then, have lost six pounds! Which is more than I have ever been able to lose that quickly on any diet.

 
Old 03-15-2012, 08:25 PM   #3
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Re: Newly diagnosed with Graves...never been sick with anything...what to expect?

Oh, I also had an ultrasound as part of this diagnosis process and there are no nodules to be found...just a "diseased" thyroid...haha.

 
Old 03-16-2012, 07:44 AM   #4
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Re: Newly diagnosed with Graves...never been sick with anything...what to expect?

Welcome!

Sorry for the reason you're here but, glad you found us.

As you will note from my signature, my thyroid disease journey started with Graves'. I, too, had never been sick in my life. Please know that it's entirely possible to join the 88% of Graves' patients that go into remission after taking anti-thyroid drugs until their body indicates remission is imminent (vs. an arbitrary timeframe set by a doctor).

Now, I must admit that I do wonder if you really have Graves'. You see, the uptake scan is inconclusive for diagnosis. The only definitive test for Graves' is a TSI (thyroid stimulating immunoglobulin) blood test.....or, the alternate TRab (TSH receptor antibody) test.

Please know, though, that it's not uncommon to have a period of mild hypothyroidism before going hyper from Graves'. The Graves' antibody tests would really help you know just what's going on.

Your FreeT4 and FreeT3 thyroid hormone levels do indicate pretty significant hyperthyroidism. Usually, due to the Graves' antibodies, TSH would be undetectable.

Because your TSH is still within range, I join you in your thoughts that you might be in a hyper stage of Hashimoto's. Your high anti-thyroglobulin antibodies are more consistent with Hashi's.

The high anti-TPOab's also occur more often in Hashi's but, can be seen in Graves' - usually at lower levels.

No matter what, you are hyper and your Tapazole dose is a conservative one based upon your levels. It will do the job of lowering your levels - it just might take a little longer.

Now, the best way to take a med such as Tapazole is to recognize that it has a 6-8 hour half-life. This means that 1/2 the dose is used up within 6-8 hours and the entire dose within 12-16 hours.

Basically, if you take your 15mg once daily, your body will be on its own for the 8-12 hours after the dose wears off. Once daily dosing can make you feel a little hypo after the dose and hyper when it wears off. It also doesn't provide for stable thyroid hormone levels which feel better and bode best for healing.

In light of this fact, it's much better to divide your dose into two/day. I used to take 1/2 my dose in the morning with breakfast and the other half with dinner.

Now, about supplements. Hyperthyrodism can deplete the body of vitamins and nutrients so, it's really best to take a good multi-vitamin. It's also good to get your Vit D level checked and, if it's lower than 80 (on a scale of 30-100), it's best to start supplementing with Vit D3. 80 is the level recommended by the Vitamin D Council for those of us with autoimmune disease. (most cases of thyroid disease are autoimmune).

Acetyl-l-carnitine is very helpful for the muscle wasting that occurs as a result of hyperthyroidism and it also helps to reduce hyper symptoms. A common dose is 250mg - usually taken in the morning with breakfast to avoid the common side effects of nausea and insomnia.

You can help your Tapazole along by increasing your consumption of goitrogens. Goitrogens are a class of foods that, when eaten raw, can actually help lower thyroid hormone levels. You can search that term online to get a list of foods.

There's also a product called Thyrosoothe that can be used as an adjunct to your Tapazole and, once your levels are back in range, it might be all you need.

The very, very rare side effect of reduced white blood cell count can happen (I've yet to read of it in the almost 5 years of participating on multiple thyroid forums, including one devoted to Graves'). Yes, you would need to go to the ER if you got a fever/sore throat and, if you are dealing with reduced WBC, stopping meds solves the problem.

Everyone's response to out-of-whack thyroid levels is different but, your symptoms are typical. Usually, people start feeling better within a week of starting meds since anti-thyroid drugs are that effective. Since you're not reporting terrible symptoms, I suspect that your optimal thyroid levels will be typical for a Graves' patient: towards the high end of the normal range.

Again, I'm not 100% sure you have Graves' but, the info I shared with you still applies for people dealing with hyperthyroidism.

When are you scheduled for your next labs?
__________________
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Last edited by sammy64; 03-16-2012 at 07:48 AM.

 
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Old 03-16-2012, 08:29 AM   #5
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Re: Newly diagnosed with Graves...never been sick with anything...what to expect?

Thank you so much Sammy!

Dealing with an endocrinologist while facing a cultural/language barrier is even tougher than dealing with an endocrinologist, if you can imagine that. I really am on my own here and your advice is so, so helpful.

I did ask my doctor for that antibody test you mentioned and she would not give it to me! She said I didn't need it because she was CONFIDENT I have Graves. And she said the Graves would be confirmed with the radioactive scan thing I did (it was the kind where a gamma camera takes photos of the thyroid working after an IV injection of radioactive iodone). Then when the radioactive scan results came back, she called me in and said "See? Your thyroid worked very, very hard in this test and this confirms the Graves."

I tried to tell her that I suffered for years with light to moderate hyPO symptoms, but had a blood test at that time that came back within normal range...she said thyroid tests are very precise and if it came back within "normal" range, that means I was normal. And perhaps the "thyroid" symptoms were something else entirely. Is that a crock? I don't know...this whole thing is making me doubt my own judgment.

I had undeniable hypo symptoms for several years...winter in the northeast was hell for me because I was painfully cold...I basically hibernated...I even had to wear a coat to the movies or supermarket in the summer because the air conditioner made it too cold. My edema was awful and nothing I did fixed it...not eliminating salt, not drinking diuretic beverages, not elevating my feet, not yoga...

So I guess I need to find another doctor? Exactly which test should I ask for? I know the end result is the same no matter what I have, b/c I am in a hyper phase...but it would be niceer to have a doctor with a more sophisticated understanding. Maybe that is not even possible.

Thanks for the advice on the Tapazole. I think she was upset that I asked her a lowly pharmacist question...haha..and kind of shut down after that. She also told me something else I did not really like - I asked her, well, should I also keep taking the beta blockers? And she said, well, keep taking them until you don't feel like you need them anymore...and then cut it down to a half and wean yourself off until you take nothing. But how do I know when I don't need them anymore? As I told her, my BP has been extremely low since starting to take them...if it went any lower (apparently my signal that I don't need them any longer?) I would be in a coma. I think my nighttime regular - not taken after walking around in the Bangkok heat, of course - and it was sometimes 80/50. But I know I still need them because when I have accidentally taken them late, I have really, really felt unwell, dizzy and slightly rapid in the heart.

 
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Old 03-17-2012, 03:57 AM   #6
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Re: Newly diagnosed with Graves...never been sick with anything...what to expect?

Also, to answer your question, my next labs are scheduled for May 2nd.

 
Old 03-17-2012, 05:46 AM   #7
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Re: Newly diagnosed with Graves...never been sick with anything...what to expect?

Hi Pazoodle

As pathetic as this will sound, culture/language barrier or not, your endo sounds like a typical endo trying to treat thyroid disease - clueless.

I can only imagine that the culture/language barrier makes things worse. ((hugs))

Unfortunately, it's not just Graves' patients that go through this type of nonsense. Mismanagement of thyroid disease seems to be rampant - just read some of the other threads on here.

Bottom line, the information is out there to help you get well. I've accumulated a huge library of books, medical journal articles and links that I will gladly share.

As you recognize, all that matters right now is that you get the proper treatment. If you do have Hashi's, you will eventually go hypo. Since you are hyper now, it's appropriate to take Tapazole.

With your BP being so low, it sounds like you should wean off the beta-blocker as the doctor mentioned and take it on an as-needed basis. Your symptoms should start to ease as the Tapazole does its job.

It's appropriate to get labs 6-8 wks. after starting Tapazole. Based upon your starting labs, I don't think you're at risk of your levels going too low.

Moving forward from there, labs every 4-6 wks. max are appropriate.

The key to feeling well while dealing with Graves'/hyperthyroidism is to take the lowest possible dose that will maintain the FreeT4 level above mid-range (actually closer to the high end of the range), regardless of TSH.

You will require decreasingly lower doses as you move forward.

Please continue to post on here because we can show you how to interpret your labs and provide information for a meaningful conversation with your doctor.

And, if you can get that TSI or TRab test to know for sure whether or not you have Graves', that would be helpful.

Best of luck to you moving forward!
__________________
Graves' 2007...remission 2009....hypo 2010

Last edited by sammy64; 03-17-2012 at 05:51 AM.

 
Old 03-18-2012, 03:24 AM   #8
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Re: Newly diagnosed with Graves... never been sick with anything... what to expect?

This could be just a phase of mild hyperthyroidism. I had grave's disease where I felt hyper sometime but normal others. I wish I could go back but I was treated with Carbimazole and then RAI. From experience I would say try supplements and diet to control and you'll feel a lot better.

 
Old 03-18-2012, 03:27 AM   #9
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Re: Newly diagnosed with Graves... never been sick with anything... what to expect?

Thanks so much. I am taking the Tapazole for now but in the meantime have given up wheat and am planning on doing the whole naturopath thing, in time.

 
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