[LaurelM]

in reply to: Where are all the TT’ers? #1181875

The combination of feeling decent and trying to catch up on things that I had let slide in conjunction with holiday and kids and whew! I have glanced at some posts over the last couple of weeks but haven’t logged on much.

Glad to see you are feeling generally OK. I will have my 2nd set of post TT labs in about 10 days. I am feeling so much better overall but I had a fairly large dose increase after the first labs. My weight had been creeping up while on the PTU and a bit after the TT as well. I am tall so most people have not noticed the extra 15-20 lbs but many of my clothes don’t fit. I am assuming now that I am feeling decent that I will feel more like being active. Now that the Xmas cookies are gone, that should help too.

I totally agree that I have no regrets about having TT.

Happy New Year!
Laurel

[LaurelM]

in reply to: Worried thyroid removal will ruin my singing #1181580

Hi,
I had my TT on 8/8/13. It went really well. One thing my ENT surgeon did is what I call an up-the-nose-a-scope to look at my vocal chords both prior to and after surgery. I did however experience some temporary voice issues afterward. I did not have any nerve injury but instead experienced too much muscle tension which limited my upper range, volume, and induced voice fatigue if talking or reading aloud for a length of time. I worked with a rehab Speech and Language Pathologist for about a month which seems to have resolved my issues.

I couldn’t sing my way out of a paper bag prior to the surgery so I wasn’t worried about that but I do need to do some public speaking and reading to children so it was a little disconcerting at first but my surgeon and SLP were great about reasurring me it was only temporary.

I think picking the right surgeon is is the key if choosing TT.

Best wishes,

Laurel.

[LaurelM]

in reply to: All normal but feeling terrible. #1181535

Hi Barbra,
The TSH has a pretty wide normal range. Even though your labs may be falling within the range, it sounds like you are not at your Goldilocks just right for you dose. My endo said he likes to aim for a TSH of 1 to 2 for most people post RAI or TT. The good news is that your endo is not just leaving where you are at but is adjusting based on your symptoms as well as the numbers.

I am lucky to have had a near 6 year remission with regular testing to monitor mylevels so we have several tests to base my TSH goal upon. We know that my body likes my TSH to be about 1.2 but everyone will be a little different. It certainly is annoying that it takes so long between dose adjustments to know the real result.

Good luck!
Laurel.

[LaurelM]

in reply to: TT 8/8 #1180572

Thanks Shirley! I’m sure I will be bundled up in my down coat for our daughter’s 8:30am soccer game. At least all the fog is setting the mood for Halloween. We will hit a pumpkin patch tomorrow as well. I just happy we won’t be slogging through mud. And thank goodness we never have to go very far to find a coffee shop.

[LaurelM]

in reply to: TT 8/8 #1180570

So, I just had my first labs and endo visit this week. The labs confirmed that I am hypo which I had been suspicious of for the last couple of weeks. I have been feeling cold, tired, tight muscles, and have noticed some puffiness (I am probably the only one who can see it), and some eye pressure. My endo raised my dose by a healthy amount and said I should notice a difference in a couple of weeks with all the symptoms. Even as hypo as I am with a TSH of 20, this is still not as bad as the hyper symptoms. And, I was not suprised that we needed to adjust my dose as this was my first set of labs post TT.

I graduated from my speech therapy as a star student. All issues have resolved. Along with some vocal exercises, my SLP used lyarngeal massage to soften and release the muscles that were too tight. Not exactly the thing you will find on the spa menu but effective.

The scar keeps looking better and better. I am sure it will be significantly faded by this time next year. I see my surgeon again next week- probably for the last time.

So, some could be a little better but not really bad news and some great news. I am still happy with the decision to do the TT.

Laurel.

[LaurelM]

in reply to: TT in 6 days, ready to get it over with! #1181393

Best wishes for a speedy recovery! I had my TT on 8/8 and am very happy that I finally had it done. I had a 6 year remission (which was great while it lasted) but had struggled with maintaining stable levels over the last 1.5 years on ATDs. I will do my first labs on Monday and see my endo later next week. Overall, I feel better even though I suspect I may be a bit hypo on the replacement dose I started after surgery. I feel relieved that the surgery is done and i am onto the next step toward wellness.
Laurels

[LaurelM]

in reply to: Seeing Endo tomorrow, 9/27/2013 #1181264

I found that anytime I had a dose change of ATDs, even if my levels were in the correct range, just the fact that my body was adjusting to something new would cause unpleasant symptoms for a coupke of weeks. I am curious to see what my irst set of labs post TT say in October. My guess is that I am close if not on the right dose as I am feeling pretty good now but I could tell that my levels were inconsistent for the first few weeks as my natural stores were depleted.
Laurel

[LaurelM]

in reply to: Graves and Pregnancy #1181253

I hope some other posters with pregnancy experience post diagnosis will jump in. Kimberly has also provided a link in other threads to the medical management recomendations for pregnancy and postpartum care of the GD patient. Do try the seach feature.

I think I wasn’t clear enough about the antibody issue. The very, very, very, very small risk is there for ALL post onset GD pregnancies REGARDLESS of which treatment option was chosen, ATDs, RAI, or TT. The complication is call Neonatal Graves disease and is a temporary hyperthroid condition for the baby that can be managed. It typically resolves within a very few weeks. Stable thyroid levels are the most important thing for a healthy pregnancy. TT is often the fastest way to acheive this. But like I said, I had a healthy pregnancy on ATDs but had already been on them for a year when we conceived so my levels were stable. And, at that point it was a very low maintenance dose.

Perhaps the best thing is to consult with a Fetal Maternal specialist as these are specially trained docs who deal with complicated pregnancies.

Best wishes,
Laurel.

[LaurelM]

in reply to: Graves and Pregnancy #1181250

Hi,
I was first diagnosed about 8 months postpartum with our first. I was treated with Methimazole for about a year when we became pregnant with out second. Because i was pregnant and because I developed hives at the same time, I was switched to PTU. PTU is the preferred antithyroid drug for the first trimester. I was able to stop taking it within just a few weeks of conception as my levels were normal pregnancy levels. Autoimmune diseases often calm (but not always) during pregnancy as the mother’s immune system supresses so as not to reject the fetus as something foreign. However, up to 12 months postpartum is the flipside. After delivery, the immune system kicks back on and this is often a time that autoimmune disease will flare up. We fully expected me to have a recurrence after delivering our second. For reasons unknown, I experience about a 6 year remission. Both my kids are happy, healthy, and doing well in school.

I came out of remission about 17 months ago and restarted PTU. Because of the hives, I was unable to try the Methimazole again. This time it was controlling the levels but I kept having to adjust and just kept having to take more andmore to stay in range. My endo and I agreed that a TT should be considered but he left the treatment choice up to me. I had the TT in August and am feeling better and better all the time. It was a good choice for me.

During my pregnancy, I was officially considered high risk. In addition to the GD, my first baby was a shoulder dystocia so off to a high risk OB. We just did some extra monitoring on things like growth and heartrate. The mother’s TSI should also be check in the 3rd trimester regardless of treatment choice because of the rare possibility of the autoantibodies crossing the placenta and causing the baby to be temporarily hyper after birth. The baby’s doctor should also know of the mother’s GD history. That said, I had the most uncomplicated pregnancy and delivery on my doctor’s roster. He actually called it ‘pleasantly boring’.

I have a good friend who had thyroid cancer and had both a TTand RAI at much higher dose than GD patients receive. She had a healthy pregnancy about 5 years ago. She had no problems related to her treatment other that paying close attention to her levels as the thyroid levels normally change during pregnancy and replacment doses may need to be adjusted.

Another consideration for treatment choice when wanting to conceive quickly is that there is a recommended wait time between RAI and conception. This ranges anywhere from 3 to 12 months based on dose and how conservative the practitioner is. With TT or ATDs pregnancy is OKas soon as your levels are stable but this may take some time. TTmay bethe quickest way to acheive this.

I know you are probably focused on the the quickest way to conceive as you said time is a factor. I would also recommend considering the postpartum period. The first year after our first child was born was so very difficult being a new Mom and struggling with GD symptoms. Much of that first year is a blur because I was so ill. I also struggled quite a bit with milk supply do to the fluxuating hormones. I alsoworriedabout taking the ATDs while nursing. All my docs including the ped endo who was consulted encouraged me to continue nursing as the benefit outweighted the very small reversible risk of the ATD passing through the milk and affecting our daughter’s thyroid levels. We did however have to have her tested via heel stick every 6 to 8 weeks. Not fun.

I this helps. I know it is a difficult decision. You can also search the forum with key words like pregnancy and read several past threads on the topic from lots of other posters.

Laurel

r

[LaurelM]

in reply to: Deb’s TT 19th August #1181213

Glad to see you back!

Laurel

[LaurelM]

in reply to: Flu Shots? #1181170

I get a flu shot every year for myself and also have my children vaccinated. My doctors have always encouraged me to do so. The only caution I was ever given was when on the ATDs was to make sure I get a ‘dead’ virus version instead of a ‘live’ virus version such as the nasal spray. I believe the reason for this is the thought that the ATDs might convey some immuosupression properties. Usually, with an autoimmune disease, our immune systems are not compromised. If anything, they are overzealous.

I personally am a firm believer in vaccines and believe that I have a responsibility to help protect those who cannot be vaccinated including babies under 6 months, cancer patients, or others who would be particularly vulnuable to a disease outbreak. Its that herd immunity concept. I do understand that other people will have different opinions about it but I feel confident in my choice for myself and family.

Oddly enough, I was offered the pneumonia vaccine while in the hospital. Apparently the reccomendations are expanding for that ne as well.

Laurel

[LaurelM]

in reply to: Preparing for my first Endo appointment. Suggestions? #1181087

I can’t think of any reason your endo would need any past thyroid test results right away. It would be a question to put on your list of questions for your endo.

For me, now that I just had a TT, I started replacement. I had a near 6 year remission with lots of level checks so we know what my body’s ‘normal’ numbers look like and that will help give us a target to shoot for in determining my right replacement dose.

Take care.

Laurel.

[LaurelM]

in reply to: Would You Like to Become a Graves’ Forum WARRIOR? #1181028

I love this idea and would consider throwing my hat into the ring as this is not my first go around with Graves’ but considering i just had my TT last month and haven’t even had my
first set of post TT labs yet, it feels a little too soon.
Laurel’

[LaurelM]

in reply to: Will be gone from forum for a while #1181078

I am so sorry you and your family are going through this. I will be thinking of you at this difficult time.
Laurel

[LaurelM]

in reply to: Could my body not be absorbing synthroid properly?? #1181039

When discussing starting replacement after my TT recently, my endo said that even black coffee and tea can interfere with absorption. I would need to wait for my AM latte if I took it in the AM. He also suggested it may be both easier to take it at night and also that there was some evidence that the body absorbed it better at night. Probably the same study that Kimberly mentioned.

I have opted for right before I go to bed. This seemed much simpler as I am totally addicted to brewing my latte as soon as I get out of bed. I am in the land of Starbucks afterall. This has also cut out after dinner snacking if I want to get to bed at a decent hour- probably not a bad thing. I am looking forward to my 1st set of labs in Oct to see how I am doing.

Take care.

Laurel.

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