# New Graves Dx



## frenche84 (Mar 10, 2010)

I am so confused. For the past probably 7 years, I have gone to doctors, they have done blood work thinking that I was Hypothyroid because of my symptoms and then my blood work returns "fine". In 2008, my doctor found some nodules on my thyroid. She ordered an ultra sound which confirmed the nodules. She ordered an Uptake which said that I am "slightly hyperthyroid". My Endo referred me to an ENT who ordered a biopsy of the nodules. They came back benign but the biopsy report came back saying that I was "positive" for Hashimoto's. At that time my Endo put me on the very lowest dose of Synthroid because TSH was still "normal". I was having hives on the Synthroid so she told me to stop taking and said that I didn't need it. Around the same time I started taking the Synthroid I felt AWFUL, Endo tested me for Mono and said that the mono was making me feel so tired that I was falling asleep at my desk during the day, etc. At that time I was tired ALL the time, depressed, low energy level, had gained weight that I couldn't lose and overall just felt bad.

In May of 2009, I moved and started going to a new doctor. She is a PCP and told me that she didn't feel I needed an Endo with my Hashi's dx. I was again having the same no energy, depressed, anxious, symptoms. She did bloodwork and my TSH was 5. She did the test for the Anti Bodies for Hashi's and said that that test came back normal so she thought I would be fine. She said I didn't need to be on any Meds and that she felt that my thyroid had fixed itself.

In January of 2010, I went back to my PCP. I literally felt like I was going crazy. I couldn't remember simple things, statements, words, or phrases, had absolutely no train of thought, began getting severe headaches, had NO energy so much that I could barely make it through the day, was not able to focus, had severe brain fog, and had severe anxiety. I was in tears and so frustrated. Also my thyroid had grown so large that you can see it protruding from my neck and feel it when I swallow. She said that she felt that due to the stress of my job it was depression that was making me feel this way and dismissed it as that. She did blood work again and my TSH was 1.2, my ANA was positive, my ?Hashi Antibody? levels were fine and I was being dramatic as she put it. I told her that I wanted a second opinion and asked for a referral to an Endo. She reluctantly did so.

I was finally able to get into the Endo at the beginning of March. She saw me, reviewed my blood work and ultrasound that had been provided by the other doctor. I told her my symptoms, how bad I felt, and that I didn't know what else to do to make myself feel better. I told her that my thyroid had grown so much larger than my first ultrasound in 2008. She told me that she "didn't know that as a fact" and that she couldn't do anything about it. I left the office that day, asked my very first Endo to fax my first Ultrasound report to my new Endo. They did and that afternoon she called me and told me that I needed to schedule the Uptake.

I had my uptake scan yesterday and today. My Endo called me this afternoon to tell me that they received my results and that I have Grave's Disease. She sent me for more blood work... ultrasensitive TSH, TSI, T3, T4, and I can't remember what else and I will follow up with her as soon as that is back.

Sorry for the short novel... I am just so frustrated and WANT TO FEEL BETTER! Is it possible to have Hashi's AND Graves?? If not, why are all the tests saying conflicting things?

My 16 year old neice was diagnosed with Graves' disease last year. To be honest, I never thought that I could be Hyperthyroid or have Grave's because I am overweight. Everything that I have read about people with Grave's (before treatment) they are usually very, very thin??

Does anyone have any advice?


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## Lovlkn (Dec 20, 2009)

> I had my uptake scan yesterday and today. My Endo called me this afternoon to tell me that they received my results and that I have Grave's Disease. She sent me for more blood work... ultrasensitive TSH, TSI, T3, T4, and I can't remember what else and I will follow up with her as soon as that is back.
> 
> Sorry for the short novel... I am just so frustrated and WANT TO FEEL BETTER! Is it possible to have Hashi's AND Graves?? If not, why are all the tests saying conflicting things?
> 
> ...


Frenche84,

Welcome, no need to apologize as your story gives us some history.

It is very possible that you have both thyroid illnesses happening at the same time, it's called hashitoxicosis. Some people only have the symptom of one of them and some have both like you do. Not everybody with Graves disease is thin and if you have both illnesses I can see how one's body might get confused.

Basically what happens is the antibodies in your system will determine what symptoms you experience. Thyroid diseases have both stimulating and blocking antibodies that can affect your TSH so although it may have been normal at times for you the antibodies could have been canceling each other out thus giving you the "normal" lab number.

Th bet tests to find out what is happening as far as thyroid hormones are a FT4 and a FT3 which test the active thyroid hormone in your system. The TPO antibody test will tell you about the inflamation your thyroid might be experiencing right now.

Be sure to get hard copies of all your lab work and begin to keep a record of your symptoms.

If you are determined to have the full spectrum of thyroid disease they should start you out with either anti thyroid meds or a t4 replacement such as Synthroid.

I have hashitoxicosis as well but mainly presented with hyper symptoms and it took me a very long time to get a diagnosis (7years) so I can completely relate to what you are experiencing.


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## Andros (Aug 26, 2009)

Hi and welcome. Your story sounds like so many others here myself included. These doctors have risked your health, your livelihood and your quality of life. I know you are angry. I had a great deal of anger.

First and foremost, there are no antibodies for Hashimoto's. There are antibodies that are higher in Hashimoto's such as TPO. Only FNA which you had and clearly the Hurthle cells indigenenous to Hashi's were present at pathology.

Here is what I think. You went untreated. Therefore the monster has raised it's ugly head and you are now hyperthyoid. TSI (thyroid stimulating immunoglobulin) will confirm that. You should have NO TSI period. If you do, you have hyperthyroid.

Graves' as per Dr. Robert Graves' is a clinical evaluation whereupon the patient must visibly present w/ exophthalmos, goiter, pretibial myxedema and thyrotoxicosis. You don't have to have all 4 but all 4 are inevitable left untreated.

I am so sorry that you have been treated in a substandard manner.

We are here for you. Hope we can be a help.

If you can, please share your lab and test results w/ us. We need ranges included and different labs use different ranges.

I gained a lot of weight w/hyperthyroid/Graves' and I know many who did the same. Some symptoms cross over. That is why the proper tests are so important.


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## frenche84 (Mar 10, 2010)

Thank you both for your help, advice, and expertise! 

It gets so frustrating that we have to go from doctor to doctor telling them how horrible we feel and they say.... "Let's wait it out and see how you are in six months".

I go to my Endo tomorrow morning, so we will see what she says. I will ask her for a hard copy of my labs and report them on here.


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## Andros (Aug 26, 2009)

frenche84 said:


> Thank you both for your help, advice, and expertise!
> 
> It gets so frustrating that we have to go from doctor to doctor telling them how horrible we feel and they say.... "Let's wait it out and see how you are in six months".
> 
> I go to my Endo tomorrow morning, so we will see what she says. I will ask her for a hard copy of my labs and report them on here.


I always take a stamped, self*addressed envelope and make sure it gets in the proper hands. In the lower left corner I write the date of the labs. They are so pleased I do this and I never fail to get my lab results in the mail in a timely fashion.

It is good to track this stuff mainly because you want to know where your labs are at when you feel good so you can refer back to that time as to what you were taking and how much etc..

We should not have to pay for office visits like the one's you describe. I want to say more but this is not the place.


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## frenche84 (Mar 10, 2010)

I went to see my Endo today. She said that I do have both Hashimoto's and Grave's Disease and like ya'll said, I have Hashitoxocis. She said that my goes from Hyper to Hypo often. As sad as it sounds, it finally made me feel validated for her to tell me that that is why I felt so bad.

She gave me some of my labs. She told me that in May of 09, my TSH was 5.0 (.3*5.1 UIU/ML). In December of 09, my TSH was 1.12 (.3*5/1 UIU/ML).

My Thyroid Uptake and Scan said the following: 
Thyroid: Homogeneous activity is seen throughout both lobes of the thyroid. There are no focal abnormalities.
4 hour uptake: 22.4% (Normal 5*15%)
24 hour uptake: 33.5% (Normal is 15*35%)

Impressions: Elevated thyroid uptake on the 4 hour image with uptake at the upper limits of normal at 24 hours. In this patient with a diffusely enlarged gland, findings are highly suggestive of Graves' disease.

The day after the Uptake I had blood work done and my Ultrasensitive TSH was 16.100 (.300*5.1 UIU/ML); my Free T3 was 2.6 (2.3*4.2 PG/ML); my Free T4 was .72 (.73*1.95 NG/DL). My Thyroid Stimulating AB is still pending.

The Endo said that she thought that it would be very difficult to ever regulate my levels or make me feel better because I am switching back and forth from hyper to hypo and then back again. She recommended having the Thyroid removed completely. She said that no one would operate on me while I am Hypo so she put me on 50mcg of Synthroid. I have an appointment with a surgeon in two weeks. My Endo said that he specializes in removing thyroids that have been affected by Graves. We will see what he says....


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## sidpb (Jan 2, 2010)

WONDERFUL!!! Breath a sigh of relief. The horror is near it's end. Surgery is the BEST thing you can do. It ends the roller coaster and yo yo effect you are going through IMMEDIATELY!!! How long before they think you are no longer hypo and can have it removed? The surgery is a breeze and although the scar isn't wonderful I have not regretted it for one moment.


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## Lovlkn (Dec 20, 2009)

> She recommended having the Thyroid removed completely. She said that no one would operate on me while I am Hypo so she put me on 50mcg of Synthroid. I have an appointment with a surgeon in two weeks. My Endo said that he specializes in removing thyroids that have been affected by Graves. We will see what he says....


Good for you!!! I agree completely.

Be sure to bring a list of questions to ask your surgeon * I asked many I already knew the answers to just to check my surgeon out. If he is doing 4*5 surgeries a week then he would be considered highly qualified.


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## Andros (Aug 26, 2009)

frenche84 said:


> I went to see my Endo today. She said that I do have both Hashimoto's and Grave's Disease and like ya'll said, I have Hashitoxocis. She said that my goes from Hyper to Hypo often. As sad as it sounds, it finally made me feel validated for her to tell me that that is why I felt so bad.
> 
> She gave me some of my labs. She told me that in May of 09, my TSH was 5.0 (.3*5.1 UIU/ML). In December of 09, my TSH was 1.12 (.3*5/1 UIU/ML).
> 
> ...


I certainly agree w/ your endo. Boy, you found a good one! Let us know when the surgery is slated. I presume you must get that hypo under control and that will take about weeks maybe? Did she speculate?

Let us know when the TSI lab results come in. Please!


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## rkh3 (Feb 27, 2010)

Some doctors are very good. I was diagnosed with hyper 2/26, saw endo on 3/2, uptake and thyroid scan on 3/9, diagnosed with Graves on 3/11, started on meds 3/12. Very good pcp and endo. My stupid fault that I had symptoms for 2 years before mentioning it to my pcp, the 20lb weight loss in two months caused me to call, so glad I did.
________
lambo wiki


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## Andros (Aug 26, 2009)

rkh3 said:


> Some doctors are very good. I was diagnosed with hyper 2/26, saw endo on 3/2, uptake and thyroid scan on 3/9, diagnosed with Graves on 3/11, started on meds 3/12. Very good pcp and endo. My stupid fault that I had symptoms for 2 years before mentioning it to my pcp, the 20lb weight loss in two months caused me to call, so glad I did.


There are some very good doctors out there and thank you for reminding us all of that. I am also very glad for you to have received prompt diagnosis and medical intervention.


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## Andros (Aug 26, 2009)

Lovlkn said:


> Good for you!!! I agree completely.
> 
> Be sure to bring a list of questions to ask your surgeon * I asked many I already knew the answers to just to check my surgeon out. If he is doing 4*5 surgeries a week then he would be considered highly qualified.


You knew it right away, didn't you? Nothing like the voice of experience!


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## frenche84 (Mar 10, 2010)

Not sure yet when the surgery will be. She said that it the hypo could be under control in about three to four weeks, so she scheduled me for bloodwork in exactly four weeks. I'll have to see what the surgeon thinks about when this will be able to happen. It is such a relief to have a light at the end of the tunnel!


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## Andros (Aug 26, 2009)

frenche84 said:


> Not sure yet when the surgery will be. She said that it the hypo could be under control in about three to four weeks, so she scheduled me for bloodwork in exactly four weeks. I'll have to see what the surgeon thinks about when this will be able to happen. It is such a relief to have a light at the end of the tunnel!


Don't I ever know the feeling. I kid you not. God bless you! You must keep us apprised.


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## frenche84 (Mar 10, 2010)

I met with the surgeon last week and he did in fact feel it was necessary for me to have a total thyroidectomy. He and my Endo work together often so he wanted to talk to her before he scheduled anything. They talked on Friday and he called me (the surgeon himself called me to talk to me.... I was impressed because usually it is a nurse that calls! haha) and wants for me to have my levels tested again before he does any surgery. I will go in a couple of weeks for more blood work and he said if my TSH is closer to normal he will schedule the surgery. If not, my endo will readjust my Synthroid and we will wait a month or so after that to check blood again. He said either way, he anticipates that the surgery will occur in the next two to six weeks. I am so ready to try something new because I am so tired of feeling so bad. HOPEFULLy, the thyroidectomy will make me feel back to somewhere near normal.

I do have a couple more questions... I keep getting these very severe headaches. I don't know if they are migranes and don't think they are... because I have never had migranes before. Usually they are on one side of my head and it literally feels like someone is slowly screwing a screw into my head. OTC meds help a little and I usually have to pray that they hit when I am at home because I can't function with them. Is that something that sometimes comes from Graves' or Hashi's or hashitoxosis? It could also be because I have an extremely stressful job and on top of all that am trying to figure out all this medical stuff with my Thyroid... but I wondered if that was something that usually shows up with any of those DX. For some reason every time I talk to my Endo I forget to ask her about it.


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## Andros (Aug 26, 2009)

frenche84 said:


> I met with the surgeon last week and he did in fact feel it was necessary for me to have a total thyroidectomy. He and my Endo work together often so he wanted to talk to her before he scheduled anything. They talked on Friday and he called me (the surgeon himself called me to talk to me.... I was impressed because usually it is a nurse that calls! haha) and wants for me to have my levels tested again before he does any surgery. I will go in a couple of weeks for more blood work and he said if my TSH is closer to normal he will schedule the surgery. If not, my endo will readjust my Synthroid and we will wait a month or so after that to check blood again. He said either way, he anticipates that the surgery will occur in the next two to six weeks. I am so ready to try something new because I am so tired of feeling so bad. HOPEFULLy, the thyroidectomy will make me feel back to somewhere near normal.
> 
> I do have a couple more questions... I keep getting these very severe headaches. I don't know if they are migranes and don't think they are... because I have never had migranes before. Usually they are on one side of my head and it literally feels like someone is slowly screwing a screw into my head. OTC meds help a little and I usually have to pray that they hit when I am at home because I can't function with them. Is that something that sometimes comes from Graves' or Hashi's or hashitoxosis? It could also be because I have an extremely stressful job and on top of all that am trying to figure out all this medical stuff with my Thyroid... but I wondered if that was something that usually shows up with any of those DX. For some reason every time I talk to my Endo I forget to ask her about it.


If others come along, you will find that this has happened to many of us with the Graves'. I attribute it to inter-occular swelling and peri-orbital edema.

However..............I think you should let your doctor know of this if you have not done so. It could be rise in blood pressure or something like that and that would be cause for concern if it was so high as to cause a headache.

So, will you do that and will you please let us know.? We will worry!

Glad you are getting the surgery and yes, TSH has to be under control so you don't have a thyroxine dump during surgery so let's hope that happens soon.


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