[Theresa]

#1058730

Hi everyone – I’m new to the board, and looking for some guidance. I’m a 44 year old female, with 3 kids (2 adult, 1 teen).
Just 10 days ago, I went to my GP I have seen for years, mainly because I was experiencing phantom smells (it started with smoke, then went to a nasty chemical smell). Since I was there, she decided to do routine bloodwork, and it came back hyper thyroid (TSH – 0.006, Free T4 2.67). Everything else was in good range. She sent me for a MRI of my brain to rule out any kind of cyst or tumor on my brain, which was negative, and a ultrasound of the thyroid, which appeared normal, so then the uptake test, which showed a all over hyper thyroid (25% uptake after 4 hours, and 49.5% after 24). She said it appears I have GD. The crazy thing is, I feel really good most of the time. My pulse is a tad high during the day (highest has been 115), but 80-90 in the morning. Anxiety hasn’t been terrible – no different than the past 20 years . Periods are changing, but isn’t that normal for our age? I have had minor hand tremors, but nothing that I can’t live with. I have been itchy, but not like others have described. I do get "brain fog" which makes it hard to work, but I have always attributed that to the time of the month. For the most part, i’m pretty clear. I do have pretty aggrevating joint pain and some muscle pain, but again, it comes and goes, so nothing I can’t live with, or that ibuprofin doesn’t help. Anyway, to my question. My GP has referred me to a endo., and has told me my options (surgery, RAI, or Tapozole). I haven’t seen the endo yet, because all this has happened literally in the last week. Does this sound like Graves to you? All of these symptoms I have had on and off for at least 5 years, yet I have annual bloodwork (both my parents have heart disease – so they do it to watch cholesterol), and thyroid has always been normal until now.

Would you get a few more opinions and hold off on doing anything right now? It’s really confusing.

Is there any chance that the Graves has caused the thyroid to be hyper in times of stress (I’ve been under a lot of stress since August taking care of my sick father), and then when stressful situations end go back to normal? The GP said unlikely…what do you guys think?

I am so afraid of getting bigger than I am. I am 5’5" and 185 lbs. My love is horses, and if I get any bigger, I will not be able to continue riding. I have GAINED 10 lbs. in the last year, so nothing makes sense there either. I eat healthy for the most part, and try to exercise regularly. There is no history of Graves in my family, although my Mom is hypo.

I’m so glad I found this site. I’ve been reading everyone’s experiences, and it has helped teach me about the disease. Thanks for listening, and sorry I got a bit rambly ” title=”Razz” />

[Bobbi]

#1169659

Hi, Theresa, and welcome to our Board.

Blood tests are a definitive diagnostic tool for hyperthyroidism. You ARE hyperthyroid. That’s number one. Second, a scan, which shows the distribution of uptake, plus the ruling out of other possibilities (like viral infection of the thyroid) determines whether or not that hyperthyroid state is due to Graves. It does not matter how you feel. In fact, I think you should be overjoyed that it was caught before it made you hideously ill. Because if you let it go, it will, eventually, make you most hideously ill. Some of us can look back and detect periods of time prior to our diagnosis with Graves, when we think we were probably hyperthyroid. Not horrid times, but "off" times, or times when we would look at photos and realize we looked gaunt, and our eyes were somewhat bigger than normal (lid retraction, not the eye disease). But it can come and go. Antibody levels wax and wane for no well-understood reason, and since Graves symptoms are driven by antibody levels, there can be periods of being hyper followed by periods of normal. For a while. Then, enough damage will have been done to the body, that the next bout with hyper slams us to the mat. Don’t wait to be slammed to the mat.

I detect from your message that you have gained some weight, and think that might be an indication that you don’t really have Graves. But unfortuntely, some people do not lose weight while hyperthyroid. And, when their hyperthyroidism is treated, they have reported that their weight issues returned to normal, over time, just like the rest of us. The reason that a lot of people report weight gain, after treatment, is typically based, at least in part, on muscle issues. We lose muscle mass while hyperthyroid. Muscle goes away, making us weaker, and lowering our metabolic set point. Muscle weighs more than other tissues, but it also eats up more calories. So when we have a good muscle base, we can eat more than when we do not. When we regain normal levels of thyroid hormone after treatment, some (if not all) of that muscle starts to slowly come back. The scales will show weight gain. But, returning muscle is good weight to gain, not bad. Again, to repeat, because muscle eats up more calories, and we can eat more. It raises our metabolism. So, we have to endure a period of time when looking at the scale doesn’t really tell us whether or not we’re eating too much. It helps to be a bit proactive. After my RAI, I gave up adding sugar to things for a while, and I eliminated cookies, cakes and other desserts. Again, for a while. I did gain some weight, but my clothing size remained the same — i.e. returning muscle.

[Theresa]

#1169660

Thanks Bobbi – I really appreciate your input. I have made appt. with the endo. to see what the next step is.

[CMoore416]

#1169661

There are less invasive treatments to do with GD. Don’t let any Dr push you into RAI until you’ve tried meds. I was diagnosed with GD in 1997 and it went back normal, then hyper again, then normal and then the third time was horrible so I went on meds. My uptake scan was 91%! I stated with Tapazole was allergic so I went on PTU which worked. I was on it 4 years then came off when a warning for it came out. I was retested for antibodies test (you should have this for confirmation you have the antibodies for Graves) and it came back negative. I have been medicine free for over a year and am tested regularly. I have been experiencing fullness in my neck and going in for another uptake scan but hoping its nothing. I had drs just push radiation and nothing else. Always find an ends who will work with YOU! And I have to agree be thankful you have no real symptoms. I only had slight ones early on. Third time – I had EVERY symptom plus mental ones! I was a mess to say the least. I also got pregnant with my second because my cycles were messed up from it. Good lucky
Christina

[npatterson]

#1169662

I just read your post, and Bobbi’s excellent response. I hope your appointment is with a thyroid specialist (Thyroidologist). As Christina pointed out, you don’t have to RUSH into treatment, but you do need treatment of some sort, and fairly soon. Graves’ is seldom a wait-and-see disease. You do have options, and you need to investigate them There is LOTS of information here, and from the Home page. Compare the risks and benefits from the three treatments, and dialogue with your doctor.
Glad to have you aboard. Take care, Nancy Patterson

[Theresa]

#1169663

First and foremost, thanks for your responses.

Just checking in to give a update. I did see a endo. who has seen many Graves patients, and she was terrific. She explained my options (which I pretty much knew from all of you ), and I decided to try the methimazole. She put me on what she explained as a low dose to start (10 mg. 1xday) I’m just finishing the 4th week. The doc said it takes time to work, so to give it a good 8 weeks. I am re-scheduled to see her and have labs re-drawn at the end of the 8 week period. Meds may be adjusted at that point. I “think” it’s working? I have days I feel like my old self…and days that I think – uh oh, it’s not working. One symptom I do have that is getting worse, but still manageable, is on and off joint pain. It’s so strange. One day I will have a hard time holding a coffee cup because my wrists hurt so bad (both – more of a sharp shooting pain), and a day later, nothing. They are fine more than not. I thought that was more a symptom of hypo? I have definately noticed that when under a lot of stress (I have 2 adult kids still living at home in jr. college, and a teenager, am taking care of my sick father, and found a lump on my furry friend (dog) on thursday, took him to the vet friday, they did a needle aspiration with results to be in Monday. He died on Sunday, just 3 days later. I found out he had mast cell cancer. Life can be so stressful…how do you stop that? That night, for the first time in a while, I felt my heart pounding in my ears and was shaky. ugg. Much better today

[Kimberly]

#1169664

Hello – I’m so sorry for your loss. Our furry friends are definitely family members, so give yourself time to grieve.

Stress, unfortunately, is pretty much unavoidable, so all we can do is try to manage stress the best that we can. Building some “down time” into your day to focus on activities that bring you joy and give you energy is helpful. Examples include meditation, gentle yoga, walking, reading, watching funny movies, or attending a live musical or theatrical performance. Also, anything that you can do to pare down your schedule is helpful during this time. See if there are tasks that are bogging you down that you could potentially “dump” or “delegate”.

Joint pain can potentially be a side effect of Anti-Thyroid Drugs, so I would mention this to your doctor. Joint pain can also potentially be a sign of hypO, especially in conjunction with other common symptoms such as fatigue, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse. If you do feel symptoms of hypo prior to your next appointment, definitely call your doctor’s office and tell them you need a current set of labs.

Take care — and please keep us posted on how you are doing.

[Theresa]

#1169665

Thanks Kim. He was a great dog and will be missed by our family.

I’m pretty sure i’m not hypo…I still have too many signs of being hyper. The joint pain isn’t totally new, it was there before I was diagnosed…but it is worse than it was some days. I will call and mention it to the endo in case she thinks I need labs before the 8 weeks she originally mentioned.

[lavenderxs]

#1169666

Hi Theresa,
I just joined the site today! I didn’t know it existed.
Welcome to the party of Graves’ Disease.
I’ve had Graves (WOW) for 23 1/2 years! Yours sounds A LOT like mine!
Yes, stress causes Graves.
Yes, it can flare with stress events and calm down when they’re over. Don’t let anyone tell you differently. Your labs can show normal when your thyroid is just a little off, but you still feel it – if you’re sensitive to it.
Weight gain? If ONLY it was just 10 pounds. I tell my friends I’m a pro at losing 50 lbs. I’ve done it about 5 times now, and I’m doing it again. (The up side of that comment is that yes, you CAN lose weight with Graves) I’m in grad school (Nurse Practitioner) and when I’m under too much stress, my body gains weight just by me breathing. ;} I’ve gained that 50 lbs just this last year. :{
Most people think you can’t gain weight if you have Graves. I was just doing an assignment on Graves today and found where the Mayo Clinic discusses weight gain with Graves. I was told long ago that about 20% of people with Graves have hypo-active type symptoms. Looks like you and I get to help make up that 20%.
I agree with everyone else in not allowing the docs to push you into anything drastic. I refused to let them touch my thyroid. Try the medications while you nourish your thyroid. Nourishing it is key! The problem is that stress stresses your thyroid and depletes it. It needs nourishment in order to function properly. I blew mine out the first time from the stress of nursing school for my RN degree. I put it in remission for 13 years then blew it out again in accounting school. (Long story). I put it back in remission about 6 years ago and except for an occasional stressed out week or two, it has been in remission ever since.
Don’t ever stop taking your thyroid pills until your labs show you’re in remission!
I take a vitamin supplement called Trace Minerals B -12 by Standard Process. You can only get them through health care professionals like chiropractors,acupuncturists, or nurse practitioners. It is specifically formulated to nourish the thyroid. The only time I’ve worried that it was coming out of remission was when I got really sick last January and after a couple of weeks realized I hadn’t been taking them. (I forgot to get out a new bottle and put it with my regular supplements.) I started taking them again and I could feel my thyroid settling back down. They are my life saver, literally.
If you’re battling with constipation, which also isn’t normal for Graves, but is for us, (Almost 24 years of it now) the best thing I’ve found is Apple Cider Vinegar Tablets and Papaya Enzyme Tablets from the health food store for helping with digestion. I started taking these about 2-3 years ago, and I have not had a problem with constipation since.
Okay, I know this is a lot of information, but I want you to know you’re not alone. Keep your chin up. Graves is crazy but it doesn’t have to make YOU crazy.
Tami

[Kimberly]

#1169667

Tami – Hello and welcome! Thanks for sharing your story. If you have a specific link that you can share from Mayo Clinic, I’m sure that many members here would be interested in their research on weight gain.

Just a quick note for members to talk to your doctor before adding any supplements to your current regimen. It’s a good idea to make sure your doctor is aware of all prescription meds and all supplements that you are taking, just to make sure there aren’t any potential interactions.

Take care!

[Theresa]

#1169668

Thanks Lavender (and Kim With the stress lately, I definately am having symptoms again. I did call the endo., and she told me to give it more time. Unless things get to where they are worse than they originally were, she wants to wait the 8 weeks until increasing the dose of meds. Fine with me.

I do take a B12 supplement, but it’s not from the chiro. Just a over the counter I pick up at the drug store. I’ll check into the one you mentioned. As far as constipation, it is rarely a problem. It’s the other way more often :o. I do do a ground flaxseed everyday, and calcium and magnesium supplement (have been doing that way before Graves) which the endo. has the list.

Thanks again girls…always learning The sun is shining here today. Everything is always better when the sun is shining isn’t it??

[nortonroof]

#1169669

Hello everyone. I hope everyone is enjoying this beautiful Spring weather we are having! (in the Midwest anyway )

I just got back from the Endo., and am more confused than ever. 8 weeks labs show normal Free T3 (2.12), just slightly off Free T4 (0.73), and TSH – 30.510! What the heck is with that? I feel fine…don’t have symptoms of Hypo at all. Oh, and just to make things more confusing, normal range for TSI. So, I said to the endo…”I don’t have Graves then?”. She said “you still have Graves”. How can I have Graves with normal TSI? ugg. Plan of action is to cut to 5 mg. of Methimazole and re-do labs in 7-8 weeks.

What do you guys think? Would you be getting another opinion?

Theresa

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