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in reply to: After a long absence, back again! #1185103

Good luck! I’ll be sending good thoughts your way on the 16th. All of you “old timers” were so supportive when I joined this forum three years ago when I first was diagnosed and I’m thankful for all the support and information this forum provides. Wish you the best and hope you’re feeling more yourself soon.

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in reply to: dealing with Graves disease symptoms #1184969

Hello and welcome,

Hopefully the change in medication works for you. The fatigue is really overwhelming I remember. Even now on occasion, if my levels get to far away from normal, I notice extreme fatigue. Wishing you luck in finding the right dose for you. We all have to choose the best method to deal with Graves. Just keep yourself informed and hopefully you will be on the road to more normal soon. This is a great place for support, information and connection with people who understand.

Susan

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in reply to: Symptoms lag behind tsh and Free T4 #1185008

Thank you Liz, Flora and Kimberly,

I know from past values, TSH between 2 and 2.5 is a good place for me as long as T4 is less than 1.0. I agree with you Liz that seasons, stress, illness etc can affect things, and sometimes it’s not really the Graves. Although I definitely notice that along with my endo we make very minuscule changes so as not to cause wild swings, but I think a swing up to 7.22 is a lot from 2.3 and it’ll take awhile to heal from that swing. When I had RAI slightly over two years ago, I had an extremely low dose as my uptake values were through the roof. It took 9 months to make my TSH values to rise to a close to normal range -still remaining under 1.0 for a full year. Ultrasound and antibody tests also didn’t begin to show the change for over a year either, so our best guess at this point is the RAI didn’t “kill” my thyroid gland but sort of shocked it into mostly behaving. It wasn’t until about six months ago that my TSH started to rise into hypo territory. It came back down after 25 mg of synthroid but then started rising again and so now I’m at 50 mg. I think my thyroid is not at a permanently stable place and so there are going to have to be adjustments and I’m super sensitive to synthroid and so we have to go slow otherwise hyper symptoms surface while my body adjusts.

I think your reminder Liz not to always blame my thyroid first is a good one. Something I’ll definitely keep in mind. I suppose there may always be ups and downs- I think we all try to hope for longer term stability. But perspective is probably key.

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in reply to: Symptoms lag behind tsh and Free T4 #1185007

Thank you Liz, Flora and Kimberly,

I know from past values, TSH between 2 and 2.5 is a good place for me as long as T4 is less than 1.0. I agree with you Liz that seasons, stress, illness etc can affect things, and sometimes it’s not really the Graves. Although I definitely notice that along with my endo we make very minuscule changes so as not to cause wild swings, but I think a swing up to 7.22 is a lot from 2.3 and it’ll take awhile to heal from that swing. When I had RAI slightly over two years ago, I had an extremely low dose as my uptake values were through the roof. It took 9 months to make my TSH values to rise to a close to normal range -still remaining under 1.0 for a full year. Ultrasound and antibody tests also didn’t begin to show the change for over a year either, so our best guess at this point is the RAI didn’t “kill” my thyroid gland but sort of shocked it into mostly behaving. It wasn’t until about six months ago that my TSH started to rise into hypo territory. It came back down after 25 mg of synthroid but then started rising again and so now I’m at 50 mg. I think my thyroid is not at a permanently stable place and so there are going to have to be adjustments and I’m super sensitive to synthroid and so we have to go slow otherwise hyper symptoms surface while my body adjusts.

I think your reminder Liz not to always blame my thyroid first is a good one. Something I’ll definitely keep in mind. I suppose there may always be ups and downs- I think we all try to hope for longer term stability. But perspective is probably key.

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in reply to: 2nd dose of RAI #1184827

Hi,

I also had a very low dose of RAI. It did eventually work, but it took quite a long time- almost a year, which I know is short of your 20 months. If it hadn’t worked or if things change for the worse, I’m not sure what option I would choose for further treatment. There are pros and cons to all the treatment options. Only you can choose what is right for you. However, I might suggest a second opinion. Sometimes it helps to either confirm your endos thoughts or to consider another perspective. This is a disease that seems to affect each of us similarly, but at the same time very differently. The thyroid is such an important gland in the body controlling so many things, it becomes so difficult to manage normal life when it is behaving badly and we often become so desperate for relief. Only you know what is right for you and what you are willing to tolerate. I wish you luck and hope you are able to regain normalcy very soon.

Susan

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in reply to: Graves Disease Diet #1183938

Hello,

As a fellow Graves patient and definitely not a medical professional, I also urge caution about adopting any radical dietary changes. It is so tempting as your thyroid plays such a large role in metabolism, and your digestive system responds so erratically to active Graves, Graves treatments and such. I know it often seems as if your digestive system will never work normally again. Plus the digestive symptoms are so awful and life consuming, you become so desperate you will try anything. Although eating a balanced, healthy diet is never a bad idea, any radical changes could confuse the issue and some of them might even be unnecessary or possibly dangerous.

I have experienced the gamut of horrid, embarrassing digestive symptoms, so I really do understand why you are hoping dietary changes will provide some relief. Just please take it slow and only make one small change at a time and give your body time to let you know if it was a good change or not.

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in reply to: How do you deal with Insomnia??! #1183899

Hi,

The insomnia is incredibly scary and really awful! The only thing that truly helped was getting the thyroid numbers (free T3 and T4) back under control. I really feel for you. The ups and downs are something most of here deal with and they are absolutely a nightmare. I hope that whatever decision you ultimately land upon for treatment helps you get things back on track so that you can sleep. It’s bad enough all the other symptoms and disruptions in our lives because of Graves. Not sleeping is really one of the last straws!
I don’t have any good answers for you. Be extra kind to yourself and hopefully the dose adjustments will give you some relief soon.

Susan

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in reply to: Post RAI – TSH levels too low #1183724

Hi ccorhn,

Great news! So happy for you. Good news reminds us all that there is light at the end of the tunnel, and hopefully we all will get there.
-Susan

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in reply to: Frustration #1183853

Thank you Kimberly, AZ Graves Guy, flora, and gator girly.
Yes Flora you’re exactly correct- we are lucky to have this forum. I appreciate each of your thoughts and responses. Kimberly, I have read a lot of posts and took your advice. The surgeon I am seeing is the highest volume surgeon in the Chicago area. He comes highly recommended, so if my numbers go into hyper territory I feel really comfortable with him. Flora, I’m trying your action and distraction method, and on days I just can’t I will have to just be okay with that. I hope you also find your good point too sooner rather than later. Gator girly I was wondering if you remember what your dose of RAI was? Was it low, high? Did it take 2 doses? Did you also have a lot of up and down before and after RAI? Have you been able to find a stable level now?

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in reply to: Strap in, it’s a crazy, bumpy ride!! (And I want off! lol) #1183270

Hi Chrissy,
Wow! I’m glad you listened to yourself and got the ER and they took care of you. I actually ended up in the ER (August 2014)and they sent me home saying I probably just had fluid on my lungs, fast forward a month later-thyroid storm!

I know exactly how bad you are feeling right now. I understand your decision to do anti thyroid meds/beta blocker for now instead of RAI. I am also doing anti thyroid meds plus beta blocker. It took a good four weeks to not feel so hyper all the time. I still occasionally have some hyper symptoms, but now after 7 weeks they come less and less frequently. Now that I finally know some things (read the links at the top of the forum on treatment options- they are extremely helpful) I feel more empowered to insist on what I need(somewhat)

I am always armed with my lab numbers including T3, T4, and TRAb. I even keep the uptake scan numbers with me at any appt. Having this has helped tremendously- I had to talk to the cardiologist just recently. Hyperthyroidism scares most doctors enough that once presented with these numbers they have slowed down, actually taken a seat, listened and asked follow-up questions. I knew something was wrong for several years, but I didn’t know what and was repeatedly dismissed. Now sadly after a thyroid storm episode- they are listening. If you don’t have a doctor that is listening, look for another as exhausting as that option is.
Seven weeks post storm, I feel loads, but not completely better. Luckily, my endo insisted on bed rest even though it sounded extreme. I am lucky that I have a job and insurance that allowed three weeks and days here and there even now to rest. I know this isn’t the norm and probably rare, but look into it and if you can I recommend it. It was hard and I thought I’d lose my mind as I was very jumpy from the hyper effects. It took that long just to begin to come down to normal.
Something important I’d like to convey is after being hyperthyroid for soooo long, I’m pretty sure my body doesn’t know anymore how to function at a normal level, so as it relearns I have to be patient and careful not to overdo and set recovery back. Listen to yourself and your body. You did it when you knew you had to get to the ER and you are the best at knowing what you and your body need.
Also, watch out for an emotional drop. Some days I feel downright despondent and others I feel like I need to. Quit whining. I think that’s the thyroid talking and so I try to take what it says with a grain of salt, keep a sense of humor, and reach out to family and friends whenever I can.
I wish you the best and I hope the medication begins making a difference for you.

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in reply to: Feeling fairly hopeless #1183282

Hello,

This whole Graves thing definitely bites! I’m pretty new to it. I am using anti thyroid meds and beta blockers at this point, so I don’t have any experience with RAI other than what I have read here on this site. This forum is the one place I found that does at least let me know I’m not alone and others feel as bad as I do. Please keep coming back even through the busy holidays for support because this is the time we really have to rally for each other. People who don’t have Graves really don’t quite understand how up and down many days can be simply because we “don’t really look all that sick.” Check out the link to the spoon theory. It was shared with me on this forum. It made me feel better and gave me a tool to talk about how I feel with close family at least. I truly hope you start feeling better soon, but try to remember you’re on your own timetable and if it isn’t what others have experienced it doesn’t mean you’ve done something wrong it’s just how your body needs to heal. I agree with you 100% that patience is very hard when you want to feel better. Just know that people here truly understand and we do care.

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in reply to: Hello #1183207

Hi all,

Another question – Some things I have read recently have me confused. Some say surgery is still a regular option for treatment. Some say surgery used to be very common, but is no longer. I’m fine going the anti thyroid med route for now. Just wondering depending on how things respond and being open to pursuing other options if or when needed. Hopefully not for a long whole.

The other thing I’m wondering about after reading treatment option articles on the forum. RAI and survey both result in eventual hypo state, which comes with its own mess of symptoms and not feeling well. I noticed some of you comment hypo was worse for you than hyper and some felt the other way. I know hyper has been quite awful and I’m sure hypo has it’s own hell. It also seems that we each must be our own advocate and speak up about treating how we feel and concentrating on symptoms and quality of life as opposed to primarily looking at labs, which some docs prefer I suppose because it’s more quantifiable. It’s been so long since I have felt well that I sure hope I recognize it when it happens. I will keep reading the experiences all of you have shared because I feel like that knowledge is powerful.

Have any of you experienced the wicked insomnia? How about terrifying nightmares? What has worked? My doc gave me a very low does of Ambien to help for awhile with the caveat that as my thyroid was more controlled the insomnia would resolve itself. It worked but that prescription ran out. The insomnia hasn’t resolved yet and I don’t want to ask for a renewal of that prescription because Ambien really renders you pretty out of it and that poses other issues that I find sort of scary. I would like to find another way to work through the insomnia that doesn’t leave you incapacitated. Any ideas shared would be appreciated.

Thank you

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in reply to: What to expect? #1183234

Hello and welcome,

I also was diagnosed this October. I cannot help with pregnancy questions as my children are already grown. I replied because I just wanted to let you know you are not alone.
I still feel not so great. I went back to work part time this week ,but have had to be kind to myself. People at work are kind but truthfully overwhelming. They say things like, “Well you look great!” They are trying I be kind, I realize, but what you hear is “You look great, so you must not be that sick! So I can’t imagine why you were gone for so long.” Or “You look like hell, but I’m trying to be kind and make you feel better. ” They also say things about “you need to remember to pace yourself. But I was wondering when you might get to _______?”

It’s hard. We tend to be very hard on ourselves and we are in a hurry to get “back to our lives.”
You will get back to your graphic design degree. You will feel better again, but just not right now. I’ve been reading a lot on this forum, and it has made me feel immensely better. I believe I will feel better, but I’m avoiding thinking about a date even a vague idea like 8 weeks, ten weeks, etc. because if it doesn’t happen, I know that will frustrate and depress me. So instead I’m trying to think, in time I will feel better. I don’t know what that time will be, but I’m adjusting to giving it as long as needed, trying to be honest with myself and my family and asking my doc as often as I need to.

I hope you begin to feel better. Please be gently with yourself and try to let others help and ask for help when you need. I’m not good at either of those, but it’s never to late to learn they say.

Take care

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in reply to: Hello #1183205

Thank you each.
I feel better just knowing I have people who I can ask questions of and who know I’m only slightly out of my mind;)
I’m living in a bit of a hole right now, which it sounds is pretty normal.
At least now I have faith that I can climb out with time and patience. Truly your support means the world to me.

When the Thyroid uptake scan was done , my uptake was 119% at 4 hours and 137% at 24 hours. (Range 7-25%, 10-35%). So I spent some time being treated for thyroid storm.
My TSH is .005 and hasn’t changed (which also sounds normal)
My T4 was 5.78(range .7 – 2.0)
T3 was 18.84(range 1.7 – 4.2)
TSI was 276 (range <140)
There were 2 other tests I didn’t understand:
Thyroid peroxide which was 16 (range <35) and
Thyroglobulin A which was 208 (range <115)

I’m taking methimazole 10mg 3x daily, Metoprolol ER Succinate 100mg and
SSKI 1 G solution in water 2x daily.
I feel like the semi hurtling at 80mph has crashed. LOL – better than racing through space at the speed of sound I’m told.

swhited from the Midwest
Again- many thanks

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