# Haven't been here in a couple of years



## jsgarden1 (Aug 29, 2009)

Hi all, my name is Debbie. I've been a member of this board for about 3 years but haven't been here in 2. I was diagnosed with Graves and TED 3 years ago and came here for support and to ask questions.

My Graves had come under control and I went without meds for almost 2 years. I was set to have knee replacement on Feb. 1st but my TSH was low. Nothing in the bloodwork for 2 years and now it flares up again! Anyways, I wanted to post my numbers for anyone who would be interested in helping me. The numbers are from last weeks bloodwork.

TSH (Range .03-5.60) 0.33
T4, Free (Range 0.58-1.64) 0.88
T3-Total (Range 87-178) 155

I'm figuring Monday my endo will contact me with what to do. When I went for bloodwork for my surgery my TSH was at 0.12, then 0.19. It seems to be coming up slowly on it's own. I'm thinking he might start me on methimazole again. Any suggestions? I'm getting frustrated with thyroid problems. I should also add I had an ultrasound this time as he said one side seemed bigger than the other. Waiting on results.


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## Lovlkn (Dec 20, 2009)

You look like you have antibodies affecting your TSH, or you could be on your way to going hyper again.

Your FT-4 is below mid range - your T-3 is about perfect - above 1/2 and closer to 3/4 of range. You are nowhere near hyper now - if you take the methimizol you will go hypo.

You should request a TSI and TPO to see what's going on.

How do you feel?


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## jsgarden1 (Aug 29, 2009)

Lovlkn, I have been getting pretty bad palpitations now and then. Not as bad as 2 years ago, but they've actually woken me up during the night. So bad that I was ready to wake up my hubby and have him take me to the ER. It seems to go in spurts, I can go a week or two without a palp and then wham, I feel like I can't breathe. I'm hoping the doc calls tomorrow so I can find out about the scan. Is it normal to go in and out of hyper...with weeks in between without symptoms?


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Hi all, my name is Debbie. I've been a member of this board for about 3 years but haven't been here in 2. I was diagnosed with Graves and TED 3 years ago and came here for support and to ask questions.
> 
> My Graves had come under control and I went without meds for almost 2 years. I was set to have knee replacement on Feb. 1st but my TSH was low. Nothing in the bloodwork for 2 years and now it flares up again! Anyways, I wanted to post my numbers for anyone who would be interested in helping me. The numbers are from last weeks bloodwork.
> 
> ...


Will be interested in the results of your ultra-sound.

Have you had these antibodies' tests? Do you have a goiter?

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.

Negative test results means that the autoantibodies are not present in the blood at the time of testing and may indicate that symptoms are due to a cause other than autoimmune. However, a certain percentage of people who have autoimmune thyroid disease do not have autoantibodies. If it is suspected that the autoantibodies may develop over time, as may happen with some autoimmune disorders, then repeat testing may be done at a later date.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

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/

Welcome back.....................................


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## Lovlkn (Dec 20, 2009)

> Is it normal to go in and out of hyper...with weeks in between without symptoms?


Absolutely. I think I did this the 7 years prior to my diagnosis.

The cardiac issues are your T-3, although many have cardiac with low FT-4 which you have.

Do you have Propranolol on hand? Maybe bringing your T-3 down will help alleviate your cardiac issues. Since you are going to see an endo ask for some.


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## jsgarden1 (Aug 29, 2009)

Hi again ) I do have propanolol handy, my MIL takes it. I have taken a tablet 3 times in the past 2 weeks. I don't think I have a goiter...I should be able to see it, correct? I will be asking him about the propanolol when the office calls. I guess I worry about heart issues, my dad passed at 54 from a heart attack, and my mom passed last month at 74 with a massive heart attack. I have always had a heart murmur and my doctor knows I have it. It worried me just a little when I went for my appt. last week as the doctor told the nurse I couldn't leave until I had an EKG and ultrasound. I think sometimes my mind goes places I'd be better off not going!


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## jsgarden1 (Aug 29, 2009)

Well, the endo called me today. My thyroid is larger on one side as he figured, and I have nodules. He wants me in this week for a test. I cannot remember exactly what he called it, but I'll look it up. You go in and get something (a pill? a shot?) and go back the next day for the scan. He said that if the issues are coming from the nodules they can ...I hope I have this right....Radioactive Iodine them. If it's my elntire thyroid being screwed up, he said it would probably be a good idea to just get it out. He wants to wait for the test results first. I will really consider just getting it out so I don't have to go through these heart palps for much longer. They scare me half to death! He ordered me propanolol and said he wants to wait a couple weeks on methimazole. It kind of surprises me that in 2 years time, I went from really bad symptoms with no nodules, to not quite as bad symptoms and nodules and swelling. Off to read....


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## joplin1975 (Jul 21, 2011)

Yup, it's a radioiodine uptake scan. I agree -- if things look off, get it out!


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## jsgarden1 (Aug 29, 2009)

Well, I go in Tuesday at 8 a.m. for the capsule, and back Wednesday at 8 a.m. for the scan. So glad this is moving along!


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Well, I go in Tuesday at 8 a.m. for the capsule, and back Wednesday at 8 a.m. for the scan. So glad this is moving along!


So am I; very glad you are having this uptake scan. Good! Very good!

Let us know when you can please!


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## jsgarden1 (Aug 29, 2009)

Well, here's the results of my tests. I have to have a thyroidectomy done. The doctor called this afternoon and my uptake results were not good. As he was talking, he mentioned 5 nodules and goiter. I was too shocked to ask if nodules and goiter are the same thing. I have to go on methamizole for at least 3 weeks then I can be okayed for surgery. I have an appt. with a surgeon next Friday afternoon to find out the details. I started with the tears once I got off the phone and wished I had my mom here to talk to  I lost her this January 8th. She was always who I went to when I felt bad  I hope you guys don't mind if I come here to ask more questions and for an ear. I am feeling so lost. This was NOT was I was expecting to hear.


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## joplin1975 (Jul 21, 2011)

I'm sorry you are having a down day...but I do want to say, in the end, I think you will find that this is actually going to take you to a really great place. It's hard to control autoimmune issues and the surgery is pretty easy, all things considered. Life without a thyroid has been, in my case, exceptionally better!


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Well, here's the results of my tests. I have to have a thyroidectomy done. The doctor called this afternoon and my uptake results were not good. As he was talking, he mentioned 5 nodules and goiter. I was too shocked to ask if nodules and goiter are the same thing. I have to go on methamizole for at least 3 weeks then I can be okayed for surgery. I have an appt. with a surgeon next Friday afternoon to find out the details. I started with the tears once I got off the phone and wished I had my mom here to talk to  I lost her this January 8th. She was always who I went to when I felt bad  I hope you guys don't mind if I come here to ask more questions and for an ear. I am feeling so lost. This was NOT was I was expecting to hear.


THAT is precisely why we are here! For you! Cry, vent...............whatever you need to do.

This is shocking but do know that I and many others here have been through similar and we are doing great today. Living life and feeling good and passing it forward when we can.

Let us know when surgery is scheduled and I am very very sorry for the loss of your Mother. She will always be with you; you can count on it!


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## jsgarden1 (Aug 29, 2009)

Thank you both for helping me with this. It is truly appreciated.


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Thank you both for helping me with this. It is truly appreciated.


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## webster2 (May 19, 2011)

I am sorry this is happening to you so soon after you lost your mom. I think you will feel much better once the thyroid is out. The palpitations will be gone. Those can be something else. Mine were always worse at night. Hang in there!


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## Pamala (Feb 19, 2013)

No advice to offer here, but I do wish you well! Hugs


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## jsgarden1 (Aug 29, 2009)

Another question that's been on my mind. When the endo called and said the uptake scan wasn't good and I have to have a TT, what would he see in the results that make him say that? That maybe it's not the nodules throwing everything off, but more my entire thyroid? Can he look at the results and see that it might be cancerous? I go tomorrow to the surgeon and I'll ask him then, but it is bugging me today! Anything you guys can think of...I'm all ears.


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## joplin1975 (Jul 21, 2011)

They can't really "see" if there's cancer from the scans -- ultrasound or RAIU -- but they can see characteristics of nodules that would worry them (hyper functioning, vascular, solid, or possibly the size of the nodules). I would assume that the results combined with your history is probably enough for him to recommend the TT. But, that's a guess, you'll have to be sure to let us know after you've spoken with him.


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## jsgarden1 (Aug 29, 2009)

Back from the surgeons..it was a great appt. If that is possible! Hubby went with me and we both really like him. I am scheduled for April 16 surgery barring any problems. He said the nodules on the right side of my thyroid are large. Did anyone else have a test involving vocal cords? He numbed me through my nose and put a small camera down there.I asked about cancer and he said he didn't think so,but wouldn't know for sure until after. Right now I feel better about having it done.


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Back from the surgeons..it was a great appt. If that is possible! Hubby went with me and we both really like him. I am scheduled for April 16 surgery barring any problems. He said the nodules on the right side of my thyroid are large. Did anyone else have a test involving vocal cords? He numbed me through my nose and put a small camera down there.I asked about cancer and he said he didn't think so,but wouldn't know for sure until after. Right now I feel better about having it done.


And........................you are going to feel a whole lot better "after" it's done. Then you will get your life back on track!!!


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## jsgarden1 (Aug 29, 2009)

Here is a question for you. Would taking methmazole (sp) cause me to get my period again? I went 8 months without, and had it in January. I think the stress of my mom's death and my thyroid going haywire brought it on. I now have it again. This. isn't. fair. lol. Also, I think my thyroid must have "dumped" again last night. I was asleep and woke up to the terrible palpitations again. I couldn't get back to sleep. I didn't realize it at first, but I was swinging my feet, moving my hands...all kinds of motions that I do when I'm hyper. Even making myself stop moving, I found I was right back at it without even thinking. I cannot wait for my thyroid to leave!!! FTR, I'm 53 and thought that I was done with my "friend" (or enemy lol)


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## HotGrandma (Sep 21, 2012)

If your friend is like mine night sweats and palpitations could be your friend. Who needs enemy's right.


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## jsgarden1 (Aug 29, 2009)

So true, HotGrandm


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Here is a question for you. Would taking methmazole (sp) cause me to get my period again? I went 8 months without, and had it in January. I think the stress of my mom's death and my thyroid going haywire brought it on. I now have it again. This. isn't. fair. lol. Also, I think my thyroid must have "dumped" again last night. I was asleep and woke up to the terrible palpitations again. I couldn't get back to sleep. I didn't realize it at first, but I was swinging my feet, moving my hands...all kinds of motions that I do when I'm hyper. Even making myself stop moving, I found I was right back at it without even thinking. I cannot wait for my thyroid to leave!!! FTR, I'm 53 and thought that I was done with my "friend" (or enemy lol)


I cannot wait for you to get rid of your thyroid also. Remember, this is all about hormones so no doubt your whole body is mixed up. Wait and see what happens after your surgery.

However, a call to your gynocologist certainly could not hurt.


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## jsgarden1 (Aug 29, 2009)

Remember, this is all about hormones so no doubt your whole body is mixed up. Wait and see what happens after your surgery.

That is what I was thinking too Andros. All about the hormones. I am so counting down the days till April 16th!


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## webster2 (May 19, 2011)

jsgarden1 said:


> Did anyone else have a test involving vocal cords? He numbed me through my nose and put a small camera down there.


I had this done twice. The first time I brought my hubby with me and he got to gagging watching this. It made me laugh, quite hysterically, so we had to try it another time while the husband waited ouside.

I think you'll feel better when it is all over. It's not so bad, really.


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