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Old 03-11-2011, 09:43 AM   #1
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Graves disease

does anyone here have graves disease?
I have always been hypothyroid until last yr. My thyroid did a flipflop and now even tho my body still suggest hypo, my blood tests show hypo. I have all the symptoms of Graves. I hve been takin an anti-thyroid for a yr now. My endocronologist now wants to remove my thyroid. I am worried about how this will help me.
I wonder if I will lose weight now..I have constantly been gaining and just cant lose wieght

 
Old 03-11-2011, 03:28 PM   #2
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Re: Graves disease

I have Graves' disease - took methimazole for 27 months - went into remission. Then, 4 months later, I joined the 20% of post-remission Graves' patients that move into hypothyroidism - it can be temporary but, just like hyperthyroidism, it needs to be treated.
(I'd be a miserable zombie if I wasn't taking T4/T3 meds right now)

No need to remove your thyroid if you've responded well to meds. I've done a ton of research since my Graves' Dx in June 2007 and truly, nothing beats "original equipment" as far as thyroid hormone "management" is concerned.

You see, our body's needs for thyroid hormones are constantly changing...and our thyroids adapt to those changes and produce/release the right amount the body needs.

Once you remove the thyroid - the static dose in your thyroid hormone replacement meds bottle has to somehow respond to those ever-changing needs....and it really can't.

There might be some days when your body needs more hormones than it is getting from the meds dose.....and there might be other days when the body needs less.

Even if you wind up like me - still with a thyroid but needing thyroid hormone replacement meds - you stand a chance of feeling much better than if you no longer had your thyroid.

The key to feeling well with thyroid disease is to take the appropriate meds dose and keep your thyroid hormone levels optimized....at a "place" within the normal range at which you feel/function best. For most of us, this is FreeT4 and FreeT3 levels towards the high end of the range...and definitely no lower than mid-range.

If your labs are showing hypo now - as in FT4/FT3 levels below mid-range (and you have hypo symptoms as well), that means you are taking a too-high dose of anti-thyroid meds.

Many doctors make the mistake of trying to raise our TSH when we have Graves' disease....this is an unrealistic goal (unless they make the patient hypo) since the Graves' antibodies suppress the TSH.

Dosing anti-thyroid drugs is ALWAYS based on the FreeT4 level.

If you'd like to share some lab history (including reference ranges since they vary from lab to lab and by geographical area) as well as meds dose at time of labs, I'll gladly help you sort things out.

I had to do some major doctor-shopping before I found a doctor that knew how to medicate properly for Graves' disease - I have found that many of the doctors that treat Graves' are often worse than the disease itself.
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Last edited by cd37; 03-11-2011 at 05:39 PM. Reason: typos

 
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Old 03-11-2011, 05:30 PM   #3
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Re: Graves disease

Forgot to mention....weight gain can happen when we are overmedicated on anti-thyroid drugs.

When we are overmedicated, our thyroid hormone levels drop down too low for our body's needs....you are, in essence, hypo

Must admit, I'm curious to see your labs 'cuz you mention them being hypo....yet you also mention having all the symptoms of Graves'.

Some hypo/hyper symptoms overlap - like palps and sleep disturbances. But, if you do have sleep disturbance, hypo sleep problems are usually waking during the night/inability to fall back asleep and/or waking too early. Hyper sleep issues are usually of the insomnia-type....plain ol' inability to fall asleep.

Feel free to post your symptoms if you'd like me to help you "quantify" them
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Last edited by cd37; 03-11-2011 at 05:39 PM.

 
Old 03-16-2011, 04:46 PM   #4
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Re: Graves disease

I went back to the doc today...was told that I need to have the thyroid removed because after a yr of adjusting the anti thyroid meds they arent working.
My calcium is being effected and he said my thyroid is pretty large.
My levels are good at some point but the TSH is low and the antibodies are not good.
I have a mixture of symptoms...weight gain, inability to lose the weight even tho I work out and diet, restless nights, leg aches, hair falls out some, dry skin, brittle weak finger nails, excessive sweats, blurred vision occasionally, difficulty swallowing at times due to the goiter

My surgery is planned for March 31st. He is concerned about the para thyroid..those test results go up and down also ...and the calcium dont look at that great the majority of the time. He also said that from the looks of the scan that I had, there is a chance that he may not be able to remove the thyroid without removing the para thyroid because of the way they are situated

 
Old 03-16-2011, 04:59 PM   #5
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Re: Graves disease

Hate to tell you this but, it sounds like you are being overmedicated on anti-thyroid drugs.

All of the symptoms you have are hypothyroid symptoms.

Unfortunately, you are going through what many Graves' patients go through or have gone through - myself included.

Your thyroid enlargement is most likely due to the fact that your thyroid hormone levels are too low for your body's needs. In fact, your calcium levels could very well be affected by this, too.

I must admit I am concerned for you because it sounds like your doctor is concerned about your TSH level.

I already explained to you why the TSH should be ignored.

If you have your thyroid removed, you will still have Graves'.....and your TSH will be low/suppressed for a very long time.

A doctor that doses based upon TSH will not Rx enough of the thyroid hormone replacement meds that you will need once your thyroid is removed.

This means that you will suffer with the symptoms you currently have for the rest of your life.

Have you considered getting a second....or third...or fourth opinion?

Many of us have had to see a number of doctors before finding one that understands Graves' - I'm on #5 myself.
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Last edited by cd37; 03-16-2011 at 05:02 PM. Reason: typos

 
Old 03-16-2011, 05:14 PM   #6
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Re: Graves disease

Me again

I just looked at some of your old posts - you were never truly hyper when your doctor started you on 10mg methimazole.

You had a slightly elevated FreeT3 level....if you were taking synthroid/levothyroxine, a small dose reduction would have probably helped.

If you weren't taking meds for hypothyroidism, then the beta-blocker that BransNana told you about would have lowered down that FreeT3 level for you.

Your starting dose of methimazole was VERY high considering your labs....not sure what your dose has been since then but it sure sounds like your doctor isn't too familiar with treating thyroid disease.

I sure hope you get another opinion.
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Old 03-17-2011, 07:06 AM   #7
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Re: Graves disease

I was taking .125 synthroid up until they changed me to antithyroid. I began the methimazole at 10 per day...then after the next blood test went to half that...then after the next blood test I went to 1/4 of a tablet daily. thats what I am taking right now..he didnt want to increase it because he said it wouldnt help. Ive been to 2 docs plus a surgeon...they have all said the same thing

 
Old 03-17-2011, 08:05 AM   #8
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Re: Graves disease

Honestly, something just doesn't sound right to me.....I'd be really curious to see your lab history.

I wonder if your doctor is dosing you based upon your TSH level which is a HUGE "no-no" in thyroid disease (read around on here and you'll see)

I "went thru" 4 doctors before finding one that truly understood thyroid disease.

It seems you're concerned about your weight.....while diet and exercise are, of course, a vital component of weight management, proper thyroid hormone levels are just as vital.

That's where proper labs AND proper interpretation of labs come in.....many doctors just don't do it right.
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Last edited by cd37; 03-17-2011 at 08:54 AM. Reason: typos

 
Old 05-04-2011, 03:50 PM   #9
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Question Re: Graves disease

so if my levels are changing every 3 to 4 weeks, meaning my ft3 and ft4, should i find a dr. that is going to test them every 4 to 6 weeks? I am seeing my dr. this Friday and If she don't do the lab work I all ready got a new dr. lined up =) I don't want to be over medicated!! Last lab results my ft3 was 5.7 and my ft4 was 1.19, and my ft4 has always been normal since being diagnosed! My tsh is 0.04. I was diagnosed with graves in February. I see a new endo May 18. The first one pushed for rai and then had a attitude with me cause i refused!!!
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Old 05-04-2011, 04:17 PM   #10
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Re: Graves disease

You should most definitely find a doctor that runs labs at least every 4-6 wks. Some Graves' patients need labs every 3 wks. since they've responded so well to meds.

I went into remission from Graves' and then went hypo (happens to 20% of us) - I get labs every 4 wks. 'cuz dose changes for replacement take much longer to "feel" and I like to stay feeling great.

Are you still taking a beta-blocker? That helps keep the FT3 level in line besides addressing cardiac issues that often accompany a too-high FT3.

(please always post the ranges with your results since they vary from lab to lab - your FT4 looked low to me (most common range is .8- 1.8) until I checked your previous posts...in fact, if you'd like to play things safe, how about sharing the ranges for your most recent levels?)

You were wise to refuse RAI - it is not a good treatment for Graves'....it actually causes an increase in antibody production. Well, antibodies are what got us sick in the first place. And, since the "favorite object" (the thyroid) of the antibody attack is removed via RAI, the antibodies often go after their "next-favorite" thing - the eyes. RAI can cause or exacerbate Graves' Eye Disease.

I believe RAI is overkill....figuratively and literally. 80-90% of Graves' patients can go into remission - why destroy a vital gland that just needs some help healing?
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Old 05-04-2011, 04:49 PM   #11
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Re: Graves disease

my most recent labs are tsh: 0.04 range( 0.40-5.80)
ft4: 1.19 range (0.70-1.20)
ft3: 5.7 range (2.5-3.9)
the dr. even noted that I might have upcoming thyroid underactivity, from these last labs, they were done 4-11-11.
also my pcp got a attitude with me when I asked her to check my thyroid levels, she says I will only test your tsh every 8 weeks! Well I am having a talk with her this Friday because she is my PCP its her job to take care of my health when i am, not seeing a endo but every 12 weeks!! i will be very firm with her!!
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Old 05-04-2011, 04:52 PM   #12
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Cool Re: Graves disease

yes i am still on a beta blocker. 12.5 mg of atenolol. my hear rate runs between 70 and 80 resting rate. =) i also walk and ride my bike most days of the week!
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Old 05-05-2011, 04:32 AM   #13
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Re: Graves disease

That is such an odd (and very low) range for FT4. Obviously, you are still over-range with your FT3. Do you have any symptoms?

A higher dose of your beta-blocker would most likely get that FT3 into range - your dose is very low.

I love these (stupid) comments doctors make like you "might have upcoming thyroid underactivity"....it only happens "naturally" to 20% of Graves' patients. But, it does happen to most Graves' patients 'cuz doctors overmedicate us with anti-thyroid drugs.
Both happened to me.

Testing your TSH is useless for most thyroid patients and, it's especially useless for Graves' patients since the antibodies suppress it...for a long time.

Doctors should be looking at the actual thyroid hormone levels - always - for dosing decisions.

What ATD dose are you taking? Do you divide it into at least two doses/day? This will help keep you more stable and bodes well for healing.

Truly, at this point in time, your levels should be in-range...while it's great you are exercising, I'd do it with caution until that FT3 level gets back in-range.

You might want to look at your diet and make sure you're not consuming iodine (shellfish, fast/processed foods, iodized salt). And, you could also help things along by increasing your consumption of goitrogenic foods (you can Google for a list)

Glad you're standing up for your rights with your doctors.
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Old 05-05-2011, 09:54 AM   #14
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Question Re: Graves disease

I can't increase my beta blocker my heart rate and blood pressure would be way too low, I wouldn't be able to function and take care of my children! Also my pcp said it was o.k. to walk. My heart rate after bike riding and walking is in the 90's to lower 100's. I am not having severe panic attacks either, so I know I am getting better! I don't have any symptoms of hyperthyroid anymore. I am depressed, fatigued, I am not losing alot of weight anymore. Thats pretty good I will talk more with my new endo on how to take the methimazole. I am currently taking 10 mg once in morning. My first ft3 was 6.40, range: (2.00-4.90) and this is from a different lab that was taken February 24. My first ft4 was 0.90, and that was from a different lab. that was in early february. I would think my ft3 would be normal by May 24, that will be 3 months! So hopefully when they check my ft3 and ft4 which will be either next week or when I see my new endo on May 18 it should be in normal range. From what I have read it can take longer for the ft3 to be within normal range. I really think they need to do a scan on my thyroid!! My sed rate was 55, and it has been eleveted like that for 7 years!!! THis graves disease is crummy I was fine up until I got strep throat in December and went downhill from there. My thryoid levels were normal in November. I just still can't understand how they can get that bad within 2 months?
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Old 05-05-2011, 10:03 AM   #15
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Re: Graves disease

cd37,

I am having trouble finding a doctor that know what to do also. I think currently I am on too much PTU. Do you know what Doctors mean when they say youthful thyroid? I was told I have Graves disease also and the first thing that doctor wanted to do was kill my thyroid with iodine, I switched. Although I love my GP I'm not sure he is the right one to be caring for my thyroid. Any suggestions?

 
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