# Newly diagnosed with Graves' Disease



## John (Mar 30, 2012)

Hi everyone, I'm new here. A few weeks ago my endocrinologist diagnosed me with Subclinical Graves' Disease. The diagnosis was made after a iodine update test and scan. My follow up labs last Saturday showed my levels were as follows:

Free T4: 1.56
TSH: 0.04

Are those levels typical of graves' or hyperthyroidism? I'm still learning what all this means.

My doc put me on Atenolol to slow things down and I had a _*really *_bad reaction to it (fatigue, severe depression, agitation, etc) I spent the last week getting off of it. She asked me to make some dietary changes and wants to see me again in two weeks. At that time she might want to start me on Methimazole which I'm a little nervous about taking. Are there things I can do naturally to bring my thyroid into balance? I don't want to play doctor, I'm just looking for natural, healthy lifestyle things I can do. Any advice would be greatly appreciated.


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## kmaplepark (Mar 4, 2012)

I have been taking Methimazole for over 6 months with good results. It stopped my rapid heart beat and tremors. Now I am starting to gain back all of the weight I lost due to being over active. Your Doctor should tell you which number is high and how abnormal it is. Ask him. I ask lots of questions and I am still confused. Every time he calls me with blood test results I ask how close I am to normal or acceptable.
Good luck.


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## dlo1725 (Oct 30, 2011)

Hi John:

I also have had good results with Methimazole. Insomnia is gone as well as rapid heartbeat, tremors and jello legs. I have blood test regularly to check my liver and levels. So far, so good. My levels were 3x higher than normal and Meth brought me down to normal and slightly below normal. It is a balancing act with the dosage.

I hate taking medication and researched natural cures for Graves. There is no silver bullet from what I have read so far. I started taking Flax Seed Oil as it was recommended in many articles to help balance the thyroid. Without going off the Meth, I can't say if it has helped, however it is a supplement that certainly cannot hurt.

Do you have any eye problems at this point?


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## JPGreco (Mar 2, 2012)

Hey John, I was diagnosed just a couple of weeks ago with Graves, but much worse than yours as my TSH was less than .01. I haven't gotten a copy of my labs to post up yet.

I'm currently on 50mg a day of atenolol and 40mg a day of methimazole. So far so good. A lot of my symptoms are subsiding. My heart rate is down from 115-120 to 85-90.

As far as natural ways to help with a hyper thryroid, all I've found is unsubstantiated herbal remedies. I doubt that they would be able to help most of us though. They would be useful for someone with a very mild case or someone who's labs are in range and just feels off. That is of course, if they work at all.
The only other thing I could think of is limiting your iodine intake, which is difficult as in most foods have iodized salts in them.

For now though, try the methimazole (i was very apprehensive about it as well), but its working. My tremors are basically gone except when I haven't eaten or other isolated instances. My hands used to shake just tying my shoes. Like I said, heart rate is down. Haven't started gaining weight back and some other symptoms haven't began to alleviate, but I had really bad labs. The doc originally put me on 25mg atenolol and 20mg methimazole, but doubled it when she got my labs back.

As for eye problems, if my issue is related to the thyroid, its very mild. My eyes bother me sometimes, but no pressure or bulging.

Best of luck man and don't hesitate to post up. I'm basically going through exactly what you are going through right now. I've only had one appointment so far too. Second one is next tuesday.


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## JellyB (Apr 18, 2012)

Eye problems can occur before, during or after thyroid symptoms. Some people develop eye issues many years after their diagnosis.


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## John (Mar 30, 2012)

Thanks, I appreciate you guys taking the time to respond. I'm glad forums like this exist. It's a comfort to know there are others who get where I'm coming from.

I know meds can affect everyone differently but you've given me some peace of mind about going on Methimazole if I need to.



dlo1725 said:


> Do you have any eye problems at this point?


Yes, I think I am having some trouble with my eyes. Due to being born with monocular diplopia (double, independent vision with eyes seeing separate images with no conversion) my eyes have always been a bit different from one another, but over the last few years my right eye seems to be buldging a bit. It looks bigger and my eye lid seems to retract more. I also feel pressure in that eye from time to time. I first started to notice this in some holiday pictures from a couple years ago. My right eye had a staring, angry, blank look to it. I tried to point this out to my wife but she couldn't see it and thought I was just flipping out (bless her heart!). Now it makes sense. I see my endocrinologist again in mid May, I better talk to her about it.

Can the eye condition be reversed?


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## dlo1725 (Oct 30, 2011)

Have your Endo or primary care physician recommend an Ophthalmologist that specializes in Thyroid Eye Disease. The eye doctor will know best if you have the disease. Generally, if you are diagnosed with Graves, have swollen eye lids, watery eyes, gritty feeling and some bulging or not, and pressure, you probably have TED. The eye doctor will recommend steroid eye drops, prescribe prednisone or radiation.

I am using the eye drops and have decided not to take oral prednisone due to horrible side affects. The radiation treatment is usually reserved for those who have a severe case of TED.

The eye condition cannot be reversed per se. TED usually burns itself out in time and you can have surgery after the "hot" phase of the TED is over with. The surgery can set bulging eyes back into place.

There is an antibody that attacks the eyes, as the eyes and thyroid have similar proteins. The eyes are the innocent bystanders.


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## Andros (Aug 26, 2009)

John said:


> Hi everyone, I'm new here. A few weeks ago my endocrinologist diagnosed me with Subclinical Graves' Disease. The diagnosis was made after a iodine update test and scan. My follow up labs last Saturday showed my levels were as follows:
> 
> Free T4: 1.56
> TSH: 0.04
> ...












Hi there, John! Wonder what the range is for that Free T4?

Before you start on any antithyroid med, it would be wise to get the tests listed below..........

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Since you did have RAIU (radioactive uptake) what was the rate of uptake and were any suspicious nodules noted?

If you have any TSI, even if it is below the range, that is "definitive" for hyperthyoid. As to the reason, that's another story. It could be because of cancer, Hashimoto's or Graves'.

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.

Otherwise you are classified as hyperthyroid either because of Hashi's, the criteria for that being high TPO Ab and a grapelike appearance of the thyroid, both of which are "suggestive" because this is commonly seen in Hashi's with FNA (fine needle aspiration) confirming those suspicions "if" there are Hurthle Cells indigenous to Hashimoto's. Or because of cancer. We don't know which comes first, the hyperthyroid or the cancer. We just know that they are often found together.

And as others have recommended, please see a Board Certified Ophthalmologist who has experience w/GED.

Sounds to me like you do have Graves'.

I am so sorry but rest assured we will do all we can to be supportive and informative.


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## JPGreco (Mar 2, 2012)

My T4 is over 7, so your in better shape than me right now man.


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## John (Mar 30, 2012)

I got some new labs done the other day, things are worse:

My TSH was completely suppresed, less than 0.004
My Free T3 was 315 
My Free T4 was 1.5

I've been noticing more trouble with racing heart, sweats, agitation, mild anxiety etc. My endocrinologist is going to start me on a small dose of Methimazole.


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## kmaplepark (Mar 4, 2012)

The flax seed oil is supposed to be good for the dry eye part of TED. I have tried Restasis with no improvement. I now have the collagen plugs which seemed to help at first, but not so much anymore. They probably don't last very long. 
I am now tapering off on the second round of prednisone. This does help with the pain, but yes there are side effects. I have been told my double vision will never completely go away because my up-gaze, down-gaze, and straight ahead vision are all too far off. Doctor said he can improve it with the muscle surgery when I am stable, just not 100%.
I am still hoping to get the eye socket surgery for help with the eye pressure pain, even though there are risks involved and I have read that some people end up worse afterwards. Yikes! Good luck to all who are struggling.


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## Andros (Aug 26, 2009)

kmaplepark said:


> The flax seed oil is supposed to be good for the dry eye part of TED. I have tried Restasis with no improvement. I now have the collagen plugs which seemed to help at first, but not so much anymore. They probably don't last very long.
> I am now tapering off on the second round of prednisone. This does help with the pain, but yes there are side effects. I have been told my double vision will never completely go away because my up-gaze, down-gaze, and straight ahead vision are all too far off. Doctor said he can improve it with the muscle surgery when I am stable, just not 100%.
> I am still hoping to get the eye socket surgery for help with the eye pressure pain, even though there are risks involved and I have read that some people end up worse afterwards. Yikes! Good luck to all who are struggling.


Have you had your thyroid out?

You can get prisms for your double vision. it is not recommended to get orbital decompression until everything is under control.

If you want more info, let me know.


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## JPGreco (Mar 2, 2012)

Good luck with that man. I ended up being allergic to the Methimazole and I really hope that you aren't.


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## John (Mar 30, 2012)

JPGreco said:


> Good luck with that man. I ended up being allergic to the Methimazole and I really hope that you aren't.


Thanks, JP. I've only been on it since Saturday but so far I don't seem to be allergic.


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## kmaplepark (Mar 4, 2012)

Andros said:


> Have you had your thyroid out?
> 
> You can get prisms for your double vision. it is not recommended to get orbital decompression until everything is under control.
> 
> If you want more info, let me know.


I have not had my thyroid removed. Opthalmologist says it will not help my eyes. Endocrinologist said it would be a good idea, but my levels are under control with the Methimazole. So, he said to leave it. Radiation is not recommended with the eyes I guess.
I tried the prisms, could NOT stand them. Vision was worse with them.
I understand I can't have the eye muscle alignment surgery until I am stable, but it sounds like I may ahve the orbital decompression before then. Seeing the new eye surgeon next week.
Any info you have would be appreciated. Thank you.


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## Andros (Aug 26, 2009)

John said:


> I got some new labs done the other day, things are worse:
> 
> My TSH was completely suppresed, less than 0.004
> My Free T3 was 315
> ...


And a beta-blocker, I hope?


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## Andros (Aug 26, 2009)

kmaplepark said:


> I have not had my thyroid removed. Opthalmologist says it will not help my eyes. Endocrinologist said it would be a good idea, but my levels are under control with the Methimazole. So, he said to leave it. Radiation is not recommended with the eyes I guess.
> I tried the prisms, could NOT stand them. Vision was worse with them.
> I understand I can't have the eye muscle alignment surgery until I am stable, but it sounds like I may ahve the orbital decompression before then. Seeing the new eye surgeon next week.
> Any info you have would be appreciated. Thank you.


If your vision is worse w/prisms, I would guess that the job is not being done right. The rods and cones have to be accurately determined by an expert.

Keeping you in my thoughts and prayers.


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## Serenia (Sep 27, 2011)

You sounds like you are going through a thyrotoxicosis storm. Your dr should have already put you on MMI.

I have been on MMI for 2 and a half years. I too was diagnised after going through a thyrotoxicosis storm. I spent 6 days in hospital.

My TSH was suppressed - >0.01 for most of that time.

TSH finally rose up to normal level earlier this year but is now dropping again.


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## Prairie Rose (Nov 17, 2011)

The methimazole takes about a month to see results.
It's working for me.

Definitely see an opthamologist.


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## John (Mar 30, 2012)

I got my latest lab results today:

T3 = 393
Free T4 = 2.31
TSH = 0.004

My endocrinologist is going to up my methimazole.


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## Andros (Aug 26, 2009)

John said:


> I got my latest lab results today:
> 
> T3 = 393
> Free T4 = 2.31
> ...


Even w/o the ranges, I can tell the Total 3 is high. How much Methimazole were you on and how much will you be taking now?

Have you considered ablation?


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## John (Mar 30, 2012)

Andros said:


> Even w/o the ranges, I can tell the Total 3 is high. How much Methimazole were you on and how much will you be taking now?
> 
> Have you considered ablation?


I was on 5mg per day and now I'm on 10mg. Even with that small a dose of methimazole I was experiencing vomiting, joint aches, nausea, diarrhea, etc. those symptoms were not constant, they were more off and on. This increase in dosage is to see if I can tolerate the medicine and get my levels in order but I have a strong suspicion I cannot tolerate it. My doctor explained the two options: thyroidectomy vs. RAI ablation. I really don't know which is a safer...


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