New here & have questions.

[nanettesw]

My story

I went to the Dr 6 months ago due to really heavy and long (6 weeks+) periods. When he asked me if I had any other symptoms I let him know that I also suffered from depression, anxiety, irritated skin, weight gain, and tired all the time. (all of which I had attributed to the stress of having 1 year old twins)

He said that it sounded like my thyroid and had my TSH and FT4 tested and determined that I was Hypothyroid and put me on levothyroxine. I started to feel a lot better except that I had a fast heart rate and palpitations.

After 6 weeks, labs were repeated and my medication was dropped to 50 micrograms.

Another 6 weeks, labs repeated and my meds were reduced to 25 micrograms. And after 4 weeks I was still appearing as Hyperthyroid on lab results and was taken off meds altogether, and was told to come back for labs in 6 weeks.

Well, I felt so good that in about 10 weeks I remembered that I needed to got in for some labs and was still Hyperthyroid.

Had some more blood work done and an uptake scan and was told today that It looks like have graves. Here are my most recent results.

Tsh .005 ref range .5 - 4.7
FT4 1.5 ref range .7 - 1.8
FT3 (not sure of the numbers but within normal range
uptake scan 26 % at 6 hours (elevated)33 % at 24 hours (upper normal)
no nodules an homogeneous
TSI again, not sure of the actual # but was elevated

So I still feel good for the most part. I am still not losing weight but not gaining either. I have a slight tremor and my periods have become almost non existent. (which I don't mind)

My Dr did nothing else but told me to come back in 3 months for another Tsh FT4 & FT3

So, do I have graves? (my doc never actually came out and said it) and if so why was I hypo 6 months ago and should I be getting more tests done or is going back in 3 months sufficient.

[GD Women]

Hello and welcome.

It would be irresponsible to say whether you are Graves' or not or just hyper, without knowing your FT-3 and TSI levels with Labs reference range. So next test ask Dr. office for copy of your test results with Labs ranges, then post them. TSH, both FTs. You might ask Dr office for copy of your TSI level w/range - don't think its necessary for another TSI test.

In some cases a person can make themselves hyperthyroid by taking thyroid medication without levels relating to the need for them. Although, it is not unusual for hyperthyroids to be hypothyroid first before going hyperthyroid. A person can be hyperthyroid without having Graves', however they are both treated the same.

Glad your issues are better.

[Andros]

My story

I went to the Dr 6 months ago due to really heavy and long (6 weeks+) periods. When he asked me if I had any other symptoms I let him know that I also suffered from depression, anxiety, irritated skin, weight gain, and tired all the time. (all of which I had attributed to the stress of having 1 year old twins)

He said that it sounded like my thyroid and had my TSH and FT4 tested and determined that I was Hypothyroid and put me on levothyroxine. I started to feel a lot better except that I had a fast heart rate and palpitations.

After 6 weeks, labs were repeated and my medication was dropped to 50 micrograms.

Another 6 weeks, labs repeated and my meds were reduced to 25 micrograms. And after 4 weeks I was still appearing as Hyperthyroid on lab results and was taken off meds altogether, and was told to come back for labs in 6 weeks.

Well, I felt so good that in about 10 weeks I remembered that I needed to got in for some labs and was still Hyperthyroid.

Had some more blood work done and an uptake scan and was told today that It looks like have graves. Here are my most recent results.

Tsh .005 ref range .5 - 4.7
FT4 1.5 ref range .7 - 1.8
FT3 (not sure of the numbers but within normal range
uptake scan 26 % at 6 hours (elevated)33 % at 24 hours (upper normal)
no nodules an homogeneous
TSI again, not sure of the actual # but was elevated

So I still feel good for the most part. I am still not losing weight but not gaining either. I have a slight tremor and my periods have become almost non existent. (which I don't mind)

My Dr did nothing else but told me to come back in 3 weeks for another Tsh FT4 & FT3

So, do I have graves? (my doc never actually came out and said it) and if so why was I hypo 6 months ago and should I be getting more tests done or is going back in 3 months sufficient.

Hi and welcome. Initially, most of us who have Graves'/Hyperthyroid flip flop. The disease continues on the rebound to make us more and more hyper each time.

TSI definitely points to hyperthyroid.

TSI

Results and Values
What do the test results mean?
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

Graves' as per Dr. Robert Graves is more of a clinical evaluation in that the patient must exhibit 3 out of the following.........

Exophthalmos, goiter, pretibial myxedema and thyrotoxicosis.

Your doctor probably wants to reassess giving your body time to get all the thyroxine replacement med out of your system. As a matter of fact, that can mess up RAIU. The half-life of T4 is 8 weeks and I am sure that varies slightly from individual to individual.

I am sure we will all be very interested to see your next labs and what the doc has to offer by way of medical intervention. And thank you so much for the reference ranges; they are a huge help.

How are you feeling right now this minute?

[nanettesw]

Thank you for your responses. I think I may try to get in for a second opinion from a dr that hopefully knows what he is doing. The one I am seeing right now is actually an OBGYN and I am doubting his ability in this matter. I initially thought he should test me for hashi's but he tested for graves instead and I was suprised that it came back as such but I think now he thinks that may be the only problem but I guess time will tell.

[Debbie from Milwaukee]

Hello! I think you are right about going for a 2nd opinion. Many, many docs who are not endocrinologists who are familiar with thyroid issues (because all endos are not the same) are lacking in theory and practive RE: anything to do with thyroid other than routine testing of TSH levels. I think one reason for this is that endocrinology is the one medical topic that medical students NEVER spend a rotation in. Also, the majority of docs who end up specializing in endocrinology focus on diabetes.

An endocrine specialist should be able to follow you to determine if you really do have thyroid issues emerging or if the levothyroxine brought on hyperthyroid levels and you have something else causing your symptoms. It is not unusual for female hormone/childbearing events to kickstart an autoimmune thyroid response.

[Andros]

Thank you for your responses. I think I may try to get in for a second opinion from a dr that hopefully knows what he is doing. The one I am seeing right now is actually an OBGYN and I am doubting his ability in this matter. I initially thought he should test me for hashi's but he tested for graves instead and I was suprised that it came back as such but I think now he thinks that may be the only problem but I guess time will tell.

Aaaaaaaaaaaaaaah; it was my ob/gyn that saved my life. He recognized that I was in the midst of a thyroid storm when I was in his office; got me carried to the hospital forthwith.

You never know who is best suited to help you. I always say the main criteria is that the doctor should "care" about you; first and foremost.

Let us know how you fare w/all of this.

[nascardkmd]

Hi My name is Kelly and I was diagnosed with Hyperthyroidism just about a year ago. Went to my Doctor yesterday and he says I am in the early stages of Grave's Disease. So glad I found this forum to help me understand what this disease is. He has had me on Tapazole 5 mg and Atenolol for a rapid heartbeat. My Tsh level was .3 and T4 1.43. I had a Thyroid ultrasound done and Scan a year ago and it showed small Nodules. Don't like the way I have been feeling. Glad to see I am not alone in this and I found a site with other's that are struggling with this disease also and can help support me through this.

[Andros]

Hi My name is Kelly and I was diagnosed with Hyperthyroidism just about a year ago. Went to my Doctor yesterday and he says I am in the early stages of Grave's Disease. So glad I found this forum to help me understand what this disease is. He has had me on Tapazole 5 mg and Atenolol for a rapid heartbeat. My Tsh level was .3 and T4 1.43. I had a Thyroid ultrasound done and Scan a year ago and it showed small Nodules. Don't like the way I have been feeling. Glad to see I am not alone in this and I found a site with other's that are struggling with this disease also and can help support me through this.

Hello! Welcome to the board!

Have you had RAIU (radioactive uptake scan?) When did you start on the Tapazol and Beta-blocker?

Do you think you need to have FNA(fine needle aspiration) of the nodules or are they too small to biopsy?

[nascardkmd]

I started the Tapazole about a year ago. My endo hasn't mentioned anything about a biopsy. Maybe bc the nodules are small I am guessing?! About 2 months ago he had me take the Tapazole every other day instead of every day. Atenolol he had me cut in half. According to the antibodies tests for Grave's disease they came back normal but my endo says I am in the early stages of it that's why it's not showing up in my blood yet!? Has anyone heard of this before? I am confused about all of this. UGH!

[lavender]

By the time I got diagnosed, I think I had the disease for some time. So, I had lots of antibodies. I am glad you are getting treatment now and not waiting until it gets worse. What are your symptoms? Do you know what blood work and antibody tests were run?

[nascardkmd]

My symptoms are fatigue,restlessness,racing heart,anxiety and mood swings. Also feel cold all the time. I was always more on the "hot" side. I had Tsh done. It was .3 before Tapazole.(when I was 1st diagnosed with hyperthyroidism a yr ago) The other day it (TSH) was 1.0 when I went to see my endo. I had TPO done it was 13 and Antithyroidglobulin was < 20 back in June. Those showed normal so that's I am wondering how he knows I am in early Stages of Graves if those tests came back normal? Just really confused. Is it possible to show up normal on those tests (TPO and the other one) and still have Grave's??? Please help me understand this. Thanks so much for all your help. :)

[Andros]

I started the Tapazole about a year ago. My endo hasn't mentioned anything about a biopsy. Maybe bc the nodules are small I am guessing?! About 2 months ago he had me take the Tapazole every other day instead of every day. Atenolol he had me cut in half. According to the antibodies tests for Grave's disease they came back normal but my endo says I am in the early stages of it that's why it's not showing up in my blood yet!? Has anyone heard of this before? I am confused about all of this. UGH!

So, you did have RAIU (radioactive uptake scan) whereupon they saw nodules?

Did you have TSI (thyroid stimulating immunoglobulin) lab test which would prove hyperthyroid?

TSI

Results and Values
What do the test results mean?
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

Have you had any of these lab tests?

TSI (thyroid stimulating immunoglobulin),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/unders...s/thyroid.html

As far as I know, there are no antibodies tests for Graves'. The TSI is immunoglobulin and if you have TSI, that is proof of hyperthyroid.

Graves' Disease is a clinical evaluation as per Dr. Robert Graves. You must have 3 out of 4 of the following:

Exophthalmos, goiter, thyrotoxicosis and pretibial myxedema.

Here is info on Graves'

http://www.thyroidmanager.org/Chapter10/10-frame.htm

Hope this is helpful to you.

[nascardkmd]

Thanks for the link. I will definately be reading up on it. Yes I had a Thyroid Uptake scan where I had to swallow a Iodine pill and then scan in 6 hrs and then again in 24 hrs. That's the test that showed the nodules. As far as that blood test you mentioned...not sure If I had that done or not. All I know is they told me I was Hyperthyroid put me on Tapazole and Atenolol and said I "might" have early Grave's disease?!

[Andros]

Thanks for the link. I will definately be reading up on it. Yes I had a Thyroid Uptake scan where I had to swallow a Iodine pill and then scan in 6 hrs and then again in 24 hrs. That's the test that showed the nodules. As far as that blood test you mentioned...not sure If I had that done or not. All I know is they told me I was Hyperthyroid put me on Tapazole and Atenolol and said I "might" have early Grave's disease?!

Being hyperthyroid is bad enough so I hope you don't have to deal w/Graves' as well. Early medical intervention can stave off the eventuality of
Graves' which you now know is based on the observation of the clinical signs and symptoms.

http://www.whonamedit.com/doctor.cfm/695.html

I am so glad you had the uptake scan. Tell, me................how are you feeling at the present time? Are the meds working for you? How often do you go for lab work?

[nascardkmd]

I basically feel like crap! My tsh which was redone in Dec was 1.1 but before that in Nov TSH was 2.75. After Nov doc appt he cut my meds in half so I think that's why my TSH level dropped some more and I can definately feel more symptoms now bc of it. He wants me to stay on both meds how I have been taking them and wants to recheck labs in 3 months. One of my friend's is recommending me to go see a Homeopathic Doc bc she had hyperthyroidism 4 yrs ago and she said she feels like a million bucks. She had accupuncture done too at the time. She highly recommends this Doc so I am thinking I might consult with him. Any thoughts on this approach?

[Andros]

I basically feel like crap! My tsh which was redone in Dec was 1.1 but before that in Nov TSH was 2.75. After Nov doc appt he cut my meds in half so I think that's why my TSH level dropped some more and I can definately feel more symptoms now bc of it. He wants me to stay on both meds how I have been taking them and wants to recheck labs in 3 months. One of my friend's is recommending me to go see a Homeopathic Doc bc she had hyperthyroidism 4 yrs ago and she said she feels like a million bucks. She had accupuncture done too at the time. She highly recommends this Doc so I am thinking I might consult with him. Any thoughts on this approach?

I may see a problem here. Is your doc only running TSH? Is he not doing FREE T3 and FREE T4 which is essential for proper titration of your meds?

Free T4 : (FT4) This test directly measures the free T4 in the blood rather than estimating it like the FTI. Because it is a more reliable test that the Total T4, many labs such as ours do the Free T4 routinely rather than the Total T4. High levels suggest hyperthyroidism, and low levels are found in hypothyroidism and chronic illness.

Free T3: (FT3) This test measures only the portion of thyroid hormone T3 that is "free", that is, not bound to carrier proteins. FT3 is your active hormone and also reflects hyper and/or hypo just like the FREE T4 does.

Please read about these tests here.....
http://www.amarillomed.com/howto/#Thyroid

[nascardkmd]

My Free T4 was 1.43 when 1 st diagnosed. In Nov 2010 it was 1.07 and in Dec my Free T4 was 1.29. Thanks for your quick repsones to this. I really appreciate it.

[nascardkmd]

Oh also I don't see anything about T3 in my copies I have. Don't think it was ever done according to my paperwork.

[Andros]

Oh also I don't see anything about T3 in my copies I have. Don't think it was ever done according to my paperwork.

Your FREE T3 is your active hormone. The FT4 converts to FT3 so this is a very important lab to have.

Not T4 and T3; we are talking FT4 and FT3 (F stands for FREE.)

[nascardkmd]

Sorry that's what I meant to say....in my labs I have here I don't see any Free T3 labs done. Only the Free T4 and Tsh....Tpo and antithyroidglobulin. My RBC's have been dropping also..slightly. RBC was 4.15 this last visit. Maybe I should call my Doc's nurse and see if I ever had a Free T3 done?

[Andros]

Sorry that's what I meant to say....in my labs I have here I don't see any Free T3 labs done. Only the Free T4 and Tsh....Tpo and antithyroidglobulin. My RBC's have been dropping also..slightly. RBC was 4.15 this last visit. Maybe I should call my Doc's nurse and see if I ever had a Free T3 done?

That would be a very good idea if only to have it serve as a "baseline." Let us know, please?

http://img.photobucket.com/albums/v129/LuLu1471/Hug-1-1.jpg

[nascardkmd]

Ok I will give them a call. Thanks so much for all your help.

[Andros]

Ok I will give them a call. Thanks so much for all your help.

You are more than welcome. If we can help you feel better, that would be a true blessing. That is why we are here.

[nascardkmd]

Ok I just called them and I had a Free T3 done last June. Result was 1.10 range .7-1.70

[Andros]

Ok I just called them and I had a Free T3 done last June. Result was 1.10 range .7-1.70

Thank you so much. Well......................that sure looks in line. It is a bit over mid-range where is most of us like it.

I have never seen ranges like that for the Free T3 though. But, different labs use different methods and therefore different ranges.

[lavender]

Graves is diagnosed based on Low TSH, High Free T3 and Free T4, and High TSI. You may also have TPO and Antithyroglobulin antibodies, but TSI is more specific to Graves disease.

The iodine uptake and scan gives two pieces of information, how overactive your thyroid is (that's the uptake part) and help identify any nodules.
If you have nodules, they may need follow up with a Fine Needle biopsy to determine if they are cancerous or not.

Your doctor should be checking your TSH, Free T3 and Free T4 when adjusting your anti-thyroid meds (tapazole).

In the future, when posting your lab results, it would be helpful if you posted reference ranges. Every lab is different, and it's hard to help you understand your results without the ranges.

Alternative treatments such as Homeopathy and Acupuncture may help your body overall and improve your immune system overall. Sometimes Graves goes into remission, but it usually comes back. Sometimes people have thyroditis and are temporarily hyperthyroid for about 3 months, not for a year. Improving your overall health will certainly be beneficial, but it will not cure Graves Disease.