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in reply to: Jump in TSH #1177448
Hi!
Sure, I’m about 120 lbs. (5′ 4″) give or take a pound or 2 depending on the time of day!
in reply to: Jump in TSH #1177444Hi!
My endo. told me that your body stores your thyroid hormone from 2 weeks to 2 months (post surgery). So, you were probably feeling good and had normal numbers (in part) because of your body’s own stored hormones as well as the Synthroid. As you get further out from your surgery date, your stores will be depleted, and your body will rely entirely on the Synthroid. Your TSH can jump around a lot after surgery. I went from 6.35 to 0.79 two weeks after my dose was increased from 100 mcg. to 112 mcg. (I’m on brand Synthroid as well). Hopefully, your dose increase will bring that TSH down. Get labs in 6 weeks to see how the 112 mcg is working for you.
I did start to feel better after 2 weeks on it, but 2 months on it made me feel much better. So, try to be patient with it. Your body is still recuperating from Graves, surgery, figuring out life without a thyroid and the Synthroid- it takes time. For me, it was about 4 months total before I started to feel leveled out. I’ve been on 112 since and I’m 8 months post TT now. My TSH has slipped slightly below normal (0.26)- my labs from yesterday. But, my free T4 is upper end of normal and my total T3 is normal as well, so my doctor is fine with me staying on the 112. So, there are fluctuations even when you’re relatively stable. I do feel as if I have a wee bit too much Synthroid, but my heart rate and sleep and all that is good, so I’m sticking with the 112 for now. Good luck to you & don’t worry too much. It’s hard, but with time, it will all level out.
Hi!
Just wanted to cheer you on during these healing days. It’s not easy, but it will get better and you will be feeling better.Swallowing will get easier as you heal. The headaches… well, I’ll be honest, I had tension headaches for months after my surgery. I think it had to do with recuperating from surgery, recuperating from hyperthyroidism, recuperating from child birth, and my body trying to find its way without a thyroid and processing Synthroid. I also had to have a dose increase of Synthroid 6 weeks post surgery. Once I was upped and on that dose for 2 weeks, I started to feel better and 2 months after, I really started to feel normal again! So, it took about 4 months, but I’ve been stable on that dose since then (I’m 8 months post TT).
Drink lots of water, rest, and do things that make you happy to brighten your day. Hang in there.
in reply to: Saw thyroid surgeon yesterday #1177365Hi!
As far as the parathyroids, you can take Tums (calcium) as a supplement post surgery. My surgeon had me take 1000 mg. of Tums 4 times a day the 1st week, 3 times a day the 2nd week, and twice a day the 3rd week. He told me that the parathyroids (even though not damaged) are inflamed post surgery so the Tums is like a precaution for a few weeks. I took the Tums- it wasn’t a big deal- and had no issues with my parathyroids. It’s probably better to do that than to wait for calcium issues to happen. But, check with your doctor (since I’m not one- hee hee!).
My surgeon was a general surgeon. I have no regrets about having my surgery. I’m healthy and well now.
in reply to: Back from Cleveland Clinic…oye! #1177356Hi,
I’m not in your situation, so I may be of no help. And, this might sound overly simplistic. But, you know what helped my sleep issues a lot (even when I was hyperthyroid and sleeping 2-3 hours a night). Massage. My husband would give me a massage and it helped. I’ve recently started going to Massage Envy (certified massage therapist) and it really has helped me so much. I can’t believe how much tension, stress I had in my body and it was effecting my sleep, mood, and energy. The nice thing about Massage Envy is that they are nation wide and a wellness center. So, if you have a flex spending account (medical), you can use that money for your massages. I know how crappy insomnia is- we’ve all been there with this disease. I don’t know if my recommendation will help you, but I know massage can’t hurt. Maybe give it a shot. I’ve also tried acupuncture, but I like the massage better.
in reply to: How I’m feeling after TT #1177248Congratulations!!!
The one thing I can tell you is that your body is going to need time (and a good amount of it) to fully recuperate. I didn’t have migraines, but I did have tension headaches (almost daily) for a good 3 months or so. So worried about it I was that I had a CAT Scan done to rule out a brain tumor! My doctor assured me it was my body adjusting to life without a thryoid and the Synthroid and trying to recuperate. She also tried to tell me I had been through A LOT in the last year- child birth, Graves diagnosis (hyperthyroidism), methimazole and my liver taking a beating from it, getting off the methimazole, surgery, Synthroid etc etc… the point being, our bodies go through a lot in the Graves journey, so it takes time to be and feel well. Our bodies manifest their reactions to it all in different ways; I don’t doubt that the migraines might be the way your body is trying to tell you it needs rest and time to get better. So, listen up to that body! I think my headaches were my body saying rest and also it trying to get well. Once my Synthroid dose was correct and I was on it for 2 months or so, the headaches went away. And, everything started to normalize in my body again- sleep, energy, no headaches. From post surgery to that point was about 4 months or so.
Also, I would wait on conceiving until your Synthroid dose is correct and you’re stable for a few months. My endo. told me that, if I got pregnant, I would have to have my Synthroid increased right away. So, once you know you’re pregnant, make sure you contact your endo. immediately. Don’t wait until the 8 week appointment to be checked.
Keep us posted on how you do.
in reply to: Levothyroxine issues? #1176968Yay! So happy to hear that Diane! Let us know how the Tirosint goes for you. I’m curious.
in reply to: Graves and no insurance #1177202Self pay for surgery is less than what the insurance companies would be paying. Also, many doctors/ hospitals/ states have financial aid. I paid for my surgery out of pocket. I’m on a payment plan (no interest because it is a medical bill) over the next 2 years to pay it off. If you can handle a payment plan (vs. 1 lump sum), surgery could be a possibility still.
If you foresee being able to get insurance through your employer or in some way in the relative near future though, maybe taking the ATD’s until then is the way to go.
in reply to: TT surgery scheduled for monday march 11th! #1177164Congratulations! Great news! 😎 Glad to hear everything went well. Tell her to rest and take it easy- especially for the first week. After that, I’m sure she’ll be getting back to her old self again.
Drink lots of water to get all the drugs out of the system (anesthesia and all that).
Is she going to have labs done in 6 weeks to see where her thyroid levels are at?
in reply to: Deciding treatment-leaning towards TT #1176987The “what if’s” will drive you batty. I’ve been there. So many what if’s… but, you have to try your best to focus on the here and now and what the best option is for you right now. Trying for remission isn’t a bad idea and you can take PTU during pregnancy (and methimazole the 2nd & 3rd trimesters if needed). You can breastfeed on both drugs. So, as long as your body tolerates ATD’s, you can do it.
I had to decide on a definitive treatment bc of my liver issues with ATD’s. Part of me is grateful for that odd blessing in disguise as now I don’t have to worry about going hyper again. Not that the other end of the surgery rainbow is all perfect. But, it is much, much better than being hyperthyroid!
When I found out I had to stop the ATD’s, I did think, well, if I were to get pregnant again, at least I wouldn’t be worried about taking ATD’s during pregnancy or going hyper after childbirth again. We’re not planning on having anymore children, and it isn’t to say the above would necessarily happen, but for some reason, it was comforting to know that hyper- hell was going to be behind me for good.
I still have “what if’s” that buzz through my head. I worry about TED. Kind of silly since I don’t have any symptoms except for dry eyes sometimes that drops take care of. But, it looms in the back of my mind sometimes. I want to be healthy and strong and be here a long time to take care of my children and see them grow into adults and enjoy life. I do enjoy life, but I hope to have a long, healthy life just like the rest of the world hopes for.
I guess the best advice I can say is go with what feels right to you. You’ll never be 100% sure, but you will find a peace deep down with what feels best. That’s how surgery was for me. Even before I had liver issues, I knew that if I went the definitive route, I wanted surgery. Just was that way.
in reply to: T3free & T3 total #1177192When did you have RAI (I’m sorry I can’t remember if that’s what you had)? If you started the levo. recently (within the last month or so), your body is still trying to figure out what’s going on. I had a hypo TSH (4.35), but a high free T4. Kind of weird, but it was early on after surgery (4 weeks after surgery) and my body was all over the place I guess. After 6 weeks, my TSH went to 6. something and my free T4 was still high. My dose was upped to 112, my TSH dropped to .79 or so and my free T4 stayed in the upper normal range. Everything pretty much settled after about 8 weeks after surgery (2 weeks after my dose change to 112). If you’re relatively early on in the levo. dosing journey, it’ll probably take a few months to have normal numbers that make sense and also to feel better. I hope the brand Synthroid will help you.
in reply to: Is the Uptake Test Necessary? #1177127Naisly,
Where did you hear that the uptake isn’t accurate for Graves diagnosis? I had the possibility of hyperthyroidism caused by postpartum thyroiditis or Graves. I had antibodies, but that can be true for either of the 2 causes. The uptake was seen as the 100% guarantee for a diagnosis. The nuclear doctor and technician told me that Graves Disease percentages are above 20% after 6 hours and I forget what the 24 hour uptake is, but it is (obviously) higher. If my hyperthyroidism had been caused by thyroiditis, the percentages would have been between 1% and 4% according to the nuclear doctor. Hence the scan being considered the definitive diagnostic tool.
As far as treatment, in order to do the scan, a person has to be off of methimazole or PTU for 10 days before the scan. So, you wouldn’t be on any ATD’s at that point.
in reply to: T3free & T3 total #1177190Hi Diane,
Free T3 is the hormone that is available for your body to use (for energy and metabolism). Total T3 includes the bound hormone (bound up to proteins) that your body cannot use along with the free hormone.
I think I read that you’re having anxiety problems on Synthroid? Do your labs say that your “normal”? Did you say you were on generic? Give the brand name a try. I’m on brand name Synthroid and haven’t had any big issues with it. Maybe the fillers in your generic are problematic for you or if you’ve refilled, maybe they came from different manufacturers? Just throwing out ideas. It took me a good 4 months to feel better. I was on 100 mcg for 6 weeks, upped to 112 and then 2 months on that, I started to feel better. It really sucks how long and difficult the road is, but it does get better. I can’t say it’s perfect, but it is better and I can function and enjoy my life again. I’d say give Synthroid brand a shot, get labs done, get the dose right and stay on it for at least 2 months and then go from there.
in reply to: TT surgery scheduled for monday march 11th! #1177162Hi!
I had my surgery 8 months ago and it was the best decision for me. I’m glad that I did it.
How long is the recovery? Well, the first 48 hours are rough, but even for those 2 days, I only took Advil for pain relief. I slept upright for 3 nights to help with drainage and was able to go home 4 hours after surgery. Some surgeons will keep the patient 24 hours at the hospital- depends on the doctor. The first drink of water is a doozy; so, tell your wife to think before she drinks and coordinate the swallowing. I almost choked on the 1st sip! Whoops! I ate soft foods the first few days, but otherwise was fine after that. She will feel weird sensations in her throat as she heals, but they will go away as the days pass. I was able to eat, swallow, breathe, drink, and talk after surgery. My voice was weak and got tired easily for about 3 weeks and I tended to talk from a higher tone, but all was normal after a month or so.
I started taking small walks around the block after a week or so. I was able to shower 24 hours after surgery. I didn’t use any cream or anything on the incision. I had a subcuticular stitch so the incision isn’t very obvious at all.
Her parathyroids will be inflamed so it’s important to take Tums (Calcium Carbonate) 1000 mg 4 times a day the 1st week, 3 times a day the 2nd week, and twice a day the 3rd week as the parathyroids regulate calcium levels. If her levels go low, she’ll have muscle cramps and tingly feelings in her arms and legs. You want to avoid that- so, do ask your surgeon about the Tums. Great thing about Tums is pretty much anyone can take them and they’ll make sure her calcium levels are okay.
I started Synthroid on day 2 after surgery- 100 mcg. Labs done 6 weeks later and upped to 112 mcg and I’ve been on that since. I take the brand name for consistency (instead of generics which could come from different manufacturers). My labs have been stable since 2 months post surgery. I take the Synthroid first thing in the AM on an empty stomach with a full bottle of water and wait an hour or so to eat. Don’t take supplements (especially iron and calicum) until 4 hours after taking Synthroid.
Good luck & let us know how it all goes.
in reply to: radioactive iodine treatment #1177155Hi Gloria,
Definitely take the carbimazole and get labs done every 6-8 weeks until your thyroid levels are normal and stable. Unfortunately, our thyroids won’t be “cured” per se. You might go into remission and be able to maintain normal thyroid hormone levels without the carbimazole at some point. Usually, after you’ve been on the meds. for a year or so and stable, your doctor might try to slowly wean you off of your dose and see how your levels are. Some people go into remission, some relapse. Some go into remission for years, but then relapse and go hyperthyroid again. That does seem to be the norm unfortunately. I don’t know many stories of very long term remissions where a person has never relapsed. If that happens though, you could always start the carbimazole again.
I think many people choose RAI or surgery because they get tired of the roller coaster and frequent blood tests/ dose changes with the ATD’s. After surgery or RAI, blood tests and getting the Synthroid (thyroid replacement hormone) dose is important, but it is easier to manage and stabilize than ATD’s.
Do your research and find the option that feels best for you and is medically sound for your circumstances.
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