[PeggyR]

#1018597

Hi, I have had normal TSH for a little over a year. How often do I need to have my TSH checked? Thanking you in advance. ” title=”Very Happy” /> Peggy

[Ski]

#1065919

As a general rule, you can check just annually after you’re stabilized at a TSH level where you feel comfortable, but you should know that certain things can affect your TSH levels (age, weight, different levels of activity, hormonal changes like pregnancy or menopause), so if you have an annual "schedule," but one of these things changes and you begin to feel symptomatic, it’d be a good time to check again. If your thyroid were "listening" to your TSH levels (like a normal thyroid would), then these things would self-correct, but since we who have lost our thyroids can no longer do that, we need to be vigilant ourselves. Typically, even these changes don’t cause such dramatic swings as you experienced while you were hyper, but that’s why we check at least annually, because we might not notice much change ourselves.

[mamabear]

#1065920

I agree with SKI. I too am in remission ! Congratulations to you! I am not sure if you are on medicine or not but I am 3 years in remission without meds and very grateful !
I get checked annually and anytime in between when dr. feels there is a need. I have 4 kids so being sick comes with having them, Dr. likes to make sure that I am feeling ok anywhere from 4-6 weeks after a cold/flu since we know it’s one of my triggers. Washing hands and having the kids and anyone in the family who come over wash hands has kept me fairly healthy for a while now. Kids have had strep throat, dh had the flu this past winter, sinus infections going around and just general colds and I have not once gotten sick or if I have it was just a short time. My immune system seems to be stronger than it use to be so again I’m grateful. (now if the rest of me would get better I’d be in great shape! LOL)

Congrat’s again to you, one thing I would like to remind you of is that IF you go out of remission…remember that you went into it and there is nothing saying you can’t do it again if you go out of remission! There were a few times I thought I was out and feeling icky again and there was one time when all of my levels were horrible but the meds worked and doesn’t mean they wouldn’t work again for me if I needed them.
Don’t worry every day if you will go out of remission, that will only stress you,
DO make sure to get into the habit of washing your hands before you leave your home and after you come back even if its from the store down the road.
Have others wash their hands, especially kids when they get home from anywhere. Mine do it out of habit now but there are the occasions that they say oh i did and they didn’t and I’m right there saying get in the bathroom and do it.
It just helps keep that nasty stuff away!
Eat well and listen to your body when it says stop and listen to me.

good luck and keep us posted!

[Ski]

#1065921

Hi Peggy,
I just realized that mamabear and I both presumed you reached normal after doing what WE did for treatment (meds and remission for mamabear, ablation for me) ~ please enlighten us as to your treatment path to this point? ” title=”Cool” />

[PeggyR]

#1065922

Thank you both for such a prompt reply. I have had 2 ablations and am told I only have "scar tissue", no thyroid any more. It is like, same book, different chapter…no diagnosis for years and no TSH done on me till a chronic pain specialist said, "Your hands are shaking" and then, "your heart rate is 120! Have you ever had thyroid problems?" I didn’t even really know where my thyroid was. (Now I do!!!!)

I was angry for a long time about the missed diagnosis and all the "stuff" this disease did to me and my way of life. This board was the biggest saving grace and still is!

Anyway, back to my story, after my dx I took the RAI and waited see my thyroid levels go up, but instead watched my weight go down. So, after 6 months I burst into my Endocrine’s office & demanded another! (maybe not so dramatically). The radiologists cranked up the dosage, this time. I went home, had a sore throat and slept for a couple of days. It took 6 months for me to go hypo and I continued to loss wt up until 6 months after. I think I cried when they said my TSH was 9!

I had a normal TSH over a year ago. It took a few years to get there. I am 58 years old, post menopausal and healthy, but need to loss some weight (oh, the paradox). I believe I am stablized in regards to weight, am walking daily & in 2 weeks will begin some wt. training. I feel wonderful & happy, just too chunky in the middle. I did develope some, not so healthy, eating habits while hyper that I do not recommend. My TSH in November was normal at 2.4. It was therapeutic for me to write all that! Graves is quite a journey and it’s so important to connect with fellow travellers! Does that enlighten you? LOL Peggy

[Bobbi]

#1065923

Typically, once we get stabilized in the normal zone long enough, TSH gets checked only once a year. My endo has a standing rule, though: if I suspect something is "off" I can go in to have my blood tested, without having a prescription. This is done in her office, of course — If I were having it tested anywhere else, I’d need a written prescription. She does request, though, that blood tests be spaced a minimum of six weeks, even with dose changes involved, to avoid a hormonal roller coaster from starting. I don’t know how other endos handle this type of thing. My mom, who also had Graves, was only tested once a year after she got stabilized, though, so I suspect that it is fairly common practice, once we’ve gotten to normal levels, and stay there.

[mamabear]

#1065924

Peggy it’s very enlightening! Is peggy short for Margaret? I ask because I named my youngest daughter margaret after my Great Grandmother and it is also the name of the Nun who gave my husband his dog when he was a child many years ago. We call her maggie but I do love peggy ! The names society uses now a days seems so untraditional.

Glad you have reached this far in your journey. I still have my thyroid as the drugs that I used were able to help me and then of course I was pregnant from 2002-2006 at any given time during those years I was pregnant and had 3 of 4 children. (1st one was 95′). Its funny what life can throw at us and we just keep on tickin’

My mom is trying to become stable on her meds as well (she is hypo and also post menopausal at 55). It’s a long road!

[Ski]

#1065925

Peggy,
Congratulations on getting to this point, and thanks for the clarification on your treatment! It’s just sad that so many of our stories begin with "after I was finally diagnosed"….. But it’s great to see the total arc of your experience in one post, it’ll definitely give hope to those coming in as new patients! Thanks again, and good luck!

[PeggyR]

#1065926

Bobbi- Avoiding a hormonal roller coaster when going from hypo to normal was what I learned from you before, so I appreciate the same advice in regards to staying normal and will keep it in mind. You’re a gem! Peggy

Mamabear- That is a lot of hormonal changes you have been going through, holy buckets! Kids can keep you going through some amazing times. I am Margaret and I have a dog named Maggie. Peggy was the name of a nurse at the hospital I was born at. My mother & paternal grandmother were both Margarets. In truth, when called by that name, I still think I’m in trouble. My husband likes the name also. Thank you for your support…I did cry when I read all these replies…a good -ah, I’m not alone…cry. Hang in there! Peggy

Ski- Thank you for your help. Surviving to tell the tale is one part and having my experience help another is the best, most meaningful part. And even today, when I try to share with aquaintances about being so thin & shaky- I get a blank stare or "I need a disease were I can eat anything and not get fat". I mention that because I needed a good cry about it. It’s part of who I am. Take care, Peggy

[mamabear]

#1065927

Peggy, thank you. I wanted to let you know that during my 2nd pregnancy is when I was on PTU (meds to control the hyper) and while pregnant I was taken off of it because pregnancy took over control and I was fine. During those years of being pregnant there were only a couple of times (one being the worst) that I was in need of taking the meds again. I am VERY lucky in how it worked out for me thus far.
I am for if it happens again I’ll try meds again, i am very much in the thinking of "I can’t kick it’s butt if I don’t know what it is, so knowing is everything to me….because then I can decide the ammo" If the ammo happens to be medicine well then so be it…if they say do RAI, at this point in my life depending on how bad I was I would probably do it. But it’s all about knowing what it is in order to sort out what to do next. Our maggie isn’t yet afraid to be called Margaret…she’s 3 and when called by her name she looks at you with hands on hips saying "yeah wadda ya want" with this smile that goes on and on and of course she looks just like me so I have to laugh. And she knows shes funny!!!! LOL

[PeggyR]

#1065928

Knowing one has Graves seemed to be the hardest part of the battle, for me and too many others. I’m not suggesting any treatment option, but the RAI was so easy. And I had to have it twice! They were pretty conservative with the radiation, in my case anyway, too conservative the first time. Getting the diagnosis and getting to this board is the beginning of healing for so many of us. You sound pretty tough and like a wonderful mom. I’d love to have a daughter like me! How great is that for you!!! My two sons live in California and I’m in Minnesota and no one has the money to visit- ” title=”Sad” /> … but they are healthy, working and handsome (of course). Keep on trucking Mama and I’ll see ya round the board. Peggy

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