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General Medicine

© Anthony Lee

Graves Disease

  1. cynthia62
  2. Elaine Moore
  3. cynthia62
  4. Elaine Moore
  5. u25000
  6. Elaine Moore
  7. lzb725
  8. Elaine Moore
  9. mariammc
  10. Elaine Moore

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112.   Feb 19, 2007 8:10 PM

» cynthia62 - Graves' treatment??

In response to Graves' treatment?? posted by daisyelaine:


Hi Elaine,
Thank you so much for the information. I have felt like I have been butting my head against a brick wall quite often when dealing with some medical professionals.

I went to my endocrinologist the first part of February. At that time I was still taking 20mg Tapazole. After having blood work done, I was informed my TSH was undetectable and had a modestly elevated free thyroxine of 1.84 ng/dl. The endo had me increase the Tapazole to 30mg at that time. Does this seem appropriate?

I have a local primary care physician that is very cooperative and has standing orders at my local hospital so I can check my blood work as I feel it's needed. Do you have any suggestions as to how often I should have it checked and which tests I should request?

I have seen a couple different endocrinologists at a large teaching university hospital in the past 6 years and they both seem to follow the same protocol. It scares me to think they are teaching their students the same methods/protocols. I had seen a third endo at this same university when my first endo changed hospitals, and was told that I had to take the RAI at my first visit with him. To top it off, he spoke to my husband, not me! I immediately called for an appointment with my current endocrinologist.

Thank you for your knowledge and assistance with understanding what treatment is best for me.

-- posted by cynthia62


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113.   Feb 20, 2007 11:06 AM

» Feature Writer Elaine Moore - Graves' treatment??

In response to Graves' treatment?? posted by cynthia62:
Hi,
With most labs using a range of 0.8-1.8 or 0.8-2.0 ng/ml for FT4, your level of 1.84 would have at best been considered slightly elevated. According to protocol, you would have been able to reduce your dose then to 10-15 mg daily or stayed on the 20 mg dose if you had troublesome symptoms.
It's poor management of treatment and an unreasonable view that being hypo is preferable to being hyper that causes many patients to give up. It's great that you're seeking information. With more patients showing a proactive stance, endos' views are starting to change. But when they're behind the times, it's a good idea to switch doctors, and often, family practice docs and general practitioners are more willing to learn what's new.

You'd want levels every 4 weeks while adjusting your dose. But once it starts staying stable at a certain dose and symptoms not changing, you can have labs every 6-8 weeks, lowering the dose slighly as needed. Hope this helps, Best, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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114.   Feb 20, 2007 11:57 AM

» cynthia62 - Graves' treatment??

In response to Graves' treatment?? posted by daisyelaine:


Hi Elaine!

I have chosen to start taking 20mg of Tapazole and follow up with bloodwork in about three weeks.

When I was first diagnosed w/GD, I was taking a small dose of Propranolol for tremors and palpitations. I occasionally still have palpitations and have been thinking about starting to take the Propranolol again, as it seemed to help me feel better. What are your thoughts on this?

I was also wondering, I take my pulse once in awhile when feeling hyper. It can range from 90-104 beats per minute at rest. Can you tell me what a therpeautic range would be for my pulse? I know that "normal" is considered to be 60-100 beats per minute. Is this the same for hypers? How does my heart rate coorelate with my hyperthyroidism?

I have been trying to improve my diet as suggested. I do not use iodized salt (my husband has a chronic kidney disease and have learned to cook with spices instead of salt) and am very aware of the sodium content in our foods. I do not use sugar substitutes and avoid diet drinks. I am trying to cut back on my fast food/processed food intake but is going to take some getting used to it.(It's just so easy to grab a burger for work-excuses, excuses :-) ) I am also looking into some stress reduction techniques and hope to possibly try accupuncture when I find a qualified practioner in my area.

What are your thoughts on starting a selenium supplement? Are there toxic effects from selenium or are they flushed from the body if too much is added?

As for high levels of estrogen, I am 44 years old and had a tubal ligation at the age of 23. Started experiencing menopausal symptoms (or maybe it was thyroid symptoms) around the age of 34. I then had a hysterectomy with bladder repair a couple years ago. Do you believe it would be of value to have an estrogen level drawn?

Thank you for your input and allowing me to voice my concerns. It is greatly appreciated.
Respectfully,
Cynthia

-- posted by cynthia62


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115.   Feb 21, 2007 10:38 AM

» Feature Writer Elaine Moore - Graves' treatment??

In response to Graves' treatment?? posted by cynthia62:
Hi Cynthia,
Propranolol is often used along with anti-thyroid drugs like methimazole. Propranolol and other beta blockers slightly reduce thyroid hormone levels because they inhibit the conversion of T4 into T3. And they reduce symptoms of anxiety as well as cardiac symptoms such as hypertension and increased heart rate in people with hyperthyroidism.

In some cases, especially when hyperthyroidism is mild or subclinical, beta blockers alone are used.

Low selenium levels have been found to be a common cause of autoimmune thyroid disease. You can ingest too much selenium if you're using supplements, but if you take 200 mcg selenium daily or less, you shouldn't run into problems with toxicity, and you'd have adequate blood levels.

If you still have your ovaries you may not need estrogen replacement hormone. But it's helpful to have both estrogen and progesterone levels tested. If you're having symptoms of perimenopause, it could be that progesterone creams would be adequate for balancing your levels. You might want to research estrogen dominance and progesterone creams.

Ideally, your heart rate after 10 minutes of rest would be around 70, and you really wouldn't want it higher than 95. Elevated heart rate is a classic hyperthyroid symptom, and once your levels start to fall your heart rate should come down. In the meantime, propranolol would help so you might want to ask your doctor about using a low dose until your ATD kicks in.

It sounds like you're on a good start to improving lifestyle factors that could worsen your condition. Fast food is hard to give up, but if you avoid it as much as possible you'll notice results. Salads with grilled chicken are sometimes available and make a better choice.

Best, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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116.   Feb 23, 2007 3:41 AM

» u25000 - Graves: a/rai,now lt4 (ttc)


I get the idea that w/Graves,Drs should not bother w/tsh-thanks to TRAB/TSI,is that correct??
brief history:
All of 2004 I didn't get t3 labs nor conceived (a/rai 9/03) but heres my #s
10/22/03
tsh .03 (.35-5.5)
ft3 4.3H (2.3-4.2)
ft4 3.6H (.8-1.8) *clearly fallen a/rai

12/24/03
tsh .03L
ft3 3.2
ft4 2.2H *at this point endo (who rai'd me) put me on 1/2 tab of levoxyl 125mcg

2/4/04
tsh .03
ft3 4.4
ft4 3.3 *at this point he tells me to stop levoxyl

*My tsh remained -.01 in 2004 while my ft4 stayed around 1.3 (no meds),no conception.

QUESTIONS:
1) it seems to me that if anything he should have put me on ptu not lt4 as I patiently waited 6 mths a/rai TTC.
2) that he put me on levoxyl at all to me now indicates his confusion on managing Graves patients (tho recomm by Stanford endo and appears to be on the board of AACE)
3) he did not believe I needed a Rep Endo

*By 9/04 I sought a hi risk OB who saw my levels..
9/14/04
tsh -.01
ft4 1.34
..HE believed I just needed clomid, i waited(sadly I was stuck on the tsh thing at that time,as I had not been fortunate to hear in all my webmd reads- anything about tsh tricks until about 10/05-so I didnt trust that my thyroid was not a problem).

*By Jan 05 I saw a new PCP-unfamiliar w/thyroid issues but did my labs
1/5/05
tsh -.01
ft4 1.44
*she then referred me to another endo..
2/4/05
tsh -.01
ft4 1.05
TT3 120 (60-181)* at this point Endo puts me on ptu (sadly again I didnt get the right info to see that I was dropping,my focus was on tsh p/docs and being in range)I stopped ptu a/2 weeks- awful itching/welts,called endo,said okay
3/31/05
tsh 1.46
ft4 .72 *a/this told continue to hold ptu

QUESTIONS:
4)it seems to me that she also failed to consider my history and also didn't understand how to manage Graves pat.
5)instead of ptu she should've given lt4

*So by 2005 my thyroid axis w/suppressed tsh and "in range" free's were finally going hypo per each subsequent test my tsh rose and ft4 lowered.
7/28/05
tsh 2.58 *if you consider that this # is reflective of 4 weeks prior, my tsh must've been higher, cuz I did conceive (finally a/rai) but naturally m/c 9/16 after spotting mid aug.

*So now I probably do need clomid if I have viable eggs left I may get lucky. In the meantime, thanks to you patient advocates,since my crash self education in Oct,I've been managing my own thyroid while using whoever I make an appt with (as I desperately search for worthy of my suffering- professionals to help me manage my care)
10/30/06 *on Synth 50mcg as of 10/21
tsh 5.55 (tests p/ER visit-symptoms)
ft3 2.9
ft4 1.03 *had begun lt4 1/06 per hi tsh; stopped a/painful death 5/06,restartOct
11/29/06 *tests by OB/gyn my req.
tsh 1.96
ft3 2.8
ft4 1.07 *I increased on 12/3 to 75mcg
2/20/07
tsh 1.66
ft4 1.13 *I will increase to 100mcg

*new PCP w/thyroid background refilled my 75 mcg and did these tests, however..

QUESTIONS:
6)I ask per above history, don't I need the ft3 and ft4 at minimum.
7)he also said once "in range" (which I'll go by #s I've learned) I'll only need to be tested annually,TRUE?
8)if ft4 is okay should I ever worry about ft3-t3 toxicosis has concerned me since I heard about it,espec since 2004 non conception mystery had absent ft3s
9)I've heard preferred #s for conception are ft3 3.0, ft4 1.6, tsh 1.-2.
10)I don't think I've read anywhere about whether there is a correlation between dosing fractions and incremental lab changes. EX: tsh in Oct 5.55-Nov 1.96 Feb 1.66, Oct-Nov the change was 50mcg; Dec-Feb change was addtl 25 mcg; however ft3 and ft4 only change by few points Oct,Nov,Feb. So I'd like to know if I should increase by .25 or by .50. OR are there adverse effects caused by large increases.
11)I have read several sources in about.com that ft3, ft4 too low can impede fertility. This is huge deal if Drs are going by in range labs only. So I'm concerned that I started too low at the point I didn't realize, in Oct, how much a .25mcg would affect in point changes, but time is of the essence, no thanks as well to inexper docs in my life. If I could've flown to a definite expert I would've done that long ago. But thats not a luxury avail to many. I just wonder are we all really that different when it comes to the dose changes on those w/Graves a/RAI. I should think there would be a table for expected increases per doses for ft3,ft4, but is that due to the lack of cooperation between "independent docs". All the more reason I support National healthcare. I just feel like a guinea pig.

Please take care in review/reply of my post; You are all I have for guidance; Graves and Rai are so neglected. I feel for those who don't have helpful support or internet to help themselves through these boards. This is the best.

-- posted by u25000


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117.   Feb 23, 2007 12:05 PM

» Feature Writer Elaine Moore - Graves: a/rai,now lt4 (ttc)

In response to Graves: a/rai,now lt4 (ttc) posted by u25000:
Hi Janie,

Unfortunately what you're describing is a pretty typical scenario for Graves' disease patients after RAI.

I think you've figured out exactly what happened. Your labs were misinterpreted because your doctor didn't realize how misleading the TSH test result can be after RAI. So you were given an ATD rather than replacement hormone. This, of course, worsened your hypothyroidism and as is usually the case when an unnecessary med is used (or too high of a dose) you reacted with hives. The real problem with this is that the worsening hypothyroidism causes your remaining thyroid cells to react.

The body always tries to and usually manages to fix its own problems through a process of homeostasis. So the poor remaining thyroid cells pump up their activity and this includes increased thyroid antibody production. This often triggers thyroid eye disease or pretibial myxedema and it can cause production of other autoantibodies, including phospholipid and cardiolipin antibodies. These are the major cause of miscarriage and stroke in young women. You'll want to read my article on antiphospholipid syndrome.

Thyroid hormone levels, FT4 and FT3, that are too low are associated with infertility. Because TSH is falsely decreased after RAI, you can't rely on it. However, TSH is usually the first to rise when hypothyroidism develops or worsens so the test isn't really unnecessary. Your doctor just needs to be aware that the pituitary gland recognizes TSH receptor antibodies as if they were TSH. These antibodies increase dramatically after RAI and production continues until the immune system heals and this can take many years.

Studies by Brokken, which have been described on the ATA website as long ago as 2003, show that the pituitary gland has TSH receptors. Thinking there is adequate TSH in the blood when it's really TSH receptor antibodies, the pituitary stops secreting TSH. Hypothyroidism easily occurs when TSH is .01. So you have to look at FT4 and occasionally FT3 levels.

Over time after RAI, T4 replacement hormone isn't converted into adequate T3. Usually, by 6 years after RAI, most people need both T4 and T3 replacement hormone. Some people, especially those whose immune systems heal nicely, could probably be tested once each year. And insurance companies like physicians who order tests annually.
But for most of us, our thyroid levels need to be monitored more often. The body normally produces thyroid hormone levels that vary with climate, temperature, diet, altitude, stress, general health, sleep patterns, etc. It's unrealistic to think that a certain dose of replacement hormone will provide optimal levels every day. Many of us make slight adjustments, like using more replacement hormone in the winter. And being tested every 3 or 6 months is usually needed.

And ideally both FT4 and FT3 would be tested although if your tests are staying fairly stable, at some draws an FT4 alone could be enough.

Most people do need an FT4 of 1.6 to take care of their bodily needs although some days this level could be too high and sometimes too low. Usually, an FT3 is also needed and normally TSH runs around 0.4. But if it's low it doesn't matter since it's falsely suppressed if either blocking or stimulating TSH receptor antibodies are present.

Always in pregnancy you want TSI (the stimulating TSH receptor abs) tested early on and again in the third trimester. Ideally, a test for total TSH receptor antibodies would also be done. Since these antibodies can cross the placental barrier, they must be tested so you can have proper fetal monitoring and treatment if needed. TPO antibodies are also associated with miscarriages, and in some countries TPO antibodies are tested in all pregnancies.

If FT4 is ok, it does not mean FT3 is ok. In people who develop nodules (and we're at risk for nodules after RAI) or who have active GD, FT3 often rises before FT4. The problem after RAI is usually the lack of conversion and the fact that FT4 can be normal or even high while FT3 is low. This happened to me before I started thyroid replacement hormone containing both FT4 and FT3.

You might want to check other posts in this discussion forum (topic GD) because there have been others with problems similar to yours. Best, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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118.   Feb 26, 2007 12:49 PM

» lzb725 - Emotional side effects? Any reports?


Does anyone recognize emotional side effects of the metabolic imbalances that go along with treatment?
I have had Graves for about a year, plus Graves Opthalmopathy.
I have been on 10 mg of Tapazol since December, and was stabilized for a while. At 5mg, I was still a little hyperthyroid, and my doctor says it is not good to give less than a 10 mg dose- that it is not sffective.
My last labs show that my metabolism was still in
"normal" ranges, but had decreased by 10%.
I am completely exhausted- can barely get myself off the couch on
the weekend, can barely do my job at work- I feel like I'm walking around
under water, and my brain feels like soup.
My doctor prescribed Synthroid for me to bring my metabolism up a little- but a very low dose-25 mcg. daily. I've been on it for three days and am not feeling much of any difference. I want to cry all
the time.
There is nothing else wrong with my life, but I feel depressed. I don't know if it has to do with the metabolic slowness, or if it
is something else, but it really sucks.

Has anyone had this experience?

-- posted by lzb725


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119.   Feb 27, 2007 10:42 AM

» Feature Writer Elaine Moore - Emotional side effects? Any reports?

In response to Emotional side effects? Any reports? posted by lzb725:
Hi,
You can have thyroid hormone levels that fit within the normal range but are too low for your body's needs. This is pretty common when a higher dose than needed is used. One of the most common early symptoms of hypothyroidism is depression. The other symptoms you're mentioning such as mental fog and fatigue are also common hypothyroid symptoms. Melancholia is another common symptom which makes you tearful. ATD-induced hypothyroidism will also trigger and worsen TED symptoms in those who have it.

The recommended daily dose for maintenance with Tapazole is 2.5--10.0 mg daily, but it's rare for anyone to need 10 mg after the first few months on meds.

Adding Synthroid is called Block and Replace and it's recommended when a dose of 2.5 mg Tap is too high. It will work for you if the dose of Synthroid is adequate, usually 100 mcg if 10 mg tap is used. Best to you, elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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120.   Mar 9, 2007 10:24 AM

» mariammc - grave's disease


hi everyone. today i had the results from a RAI-U scan and the number was 53. the endocrinologist told me that's too high, and since i eat a fair amount of iodine, it could have been a higher number. so, my options are to have a heart attack or have my thyroid removed, and for me to make a decision by Monday. he said that natural remedies will not work and a naturopathic doctor would just send me back to a him; still waiting for the lab results. anyone here have improvement with natural rememdies? my memory is so wiped out now that it interferes with everyday life. it's stange bc i have blood work done each year at my physical. only once, 2001, did i have an indication of a thyroid problem, and that was the T3 uptake number was 22, but since then the numbers have been normal. anyway, it's great to have a web site such as this one. thanks, maria

-- posted by mariammc


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121.   Mar 9, 2007 1:36 PM

» Feature Writer Elaine Moore - grave's disease

In response to grave's disease posted by mariammc:
Hi Maria,
Unless you have an elevated heart rate or had other bloodwork that showed evidence of cardiac disease, I'm not sure that you have any risk for having a heart attack. More heart attacks are related to hypothyroidism than hyperthyroidism. Even in subclinical conditions, hypothyroidism is considered a risk factor for heart disease but hyperthyroidism isn't. This primarily has to do with the high lipid levels seen in hypothyroidism.

The T3 uptake doesn't measure thyroid hormone. It measures the proteins that carry thyroid hormone through the blood. When levels of these binding proteins are low, less hormone circulates through the blood.

An uptake of 53 just shows that your thyroid gland is absorbing slightly more iodine/radioiodine than it should. Mild hyperthyroidism usually causes an uptake up to 70 percent, and severe hyperthyroidism often causes uptakes higher than 90 percent. But the uptake itself isn't considered reliable for assessing the severity of your condition. Symptoms are considered the most important factor, followed by blood test results, particularly your levels of FT4 and FT3.

Many people have been treated with natural remedies for Graves' disease, but if you're having symptoms, your levels will fall faster using anti-thyroid drugs (ATDs) such as propylthiouracil (PTU) or methimazole. Used at the recommended dose, these meds are safe and effective, and they help your immune system heal. In Graves' disease, hyperthyroidism is caused by an ineffective immune system.

Symptoms can also be reduced with beta blockers. These meds are usually used to reduce cardiac symptoms and symptoms of anxiety related to hyperthyroidism short-term until the ATDs begin to lower your thyroid hormone levels.

According to federal law and HIPAA regulations your doctor is obligated to tell you of all medical treatments available, letting you know the pros and cons of each treatment. You might want to keep researching your options before allowing this doctor to bully you into aggressive treatment without at least first trying a non-invasive approach. Best, Elaine

Suite101