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in reply to: Endo Appointment – surgery is now on the table #1179356
That sounds great Sue! It is always good to feel that progress is happening.
Laurel
in reply to: Newly diagnosed – help! #1179225Hi Leafy,
Welcome fo the forum! My first bout of GD was diagnosed when I was 8 months postpartum. I was started on a fairly high dose of Methimazole and then taped down pretty rapidly. I was still breastfeeding but was encouraged to continue by my endo and my baby’s doc checked with the pediatric endos at our children’s hospital who also encouraged continued breastfeeding. We just had to do a regular thyroid check for our baby just to be extra sure things were fine (her always was OK).
I was on Methimazole for almost a year when we conceived again (and I developed hives) so I was switched to PTU. I was on PTU for about 6 weeks into the pregnancy – what I could keep down that is:rolleyes:
We all expected GD to return postpartum but I luckily experienced a 6 year remission. I have now been back on PTU for a year.
It was stressful to worry about GD returning during my second pregnancy because I was so sick after my first one. It was really had being a new mother and not being physically able to do much and an emotional wreck to boot.
You can look up some other of my posts and responses regarding pregnancy and read more my experiences. Adenture has also posted quite a bit. She ended up with a thyroidecomy. If you have any other questions about my experience, I would be happy to answer them.
Take care!
Laurelin reply to: Meds: once a day? #1179207I took Methimazole for my first episode over 6 years ago. I remember my endo said an advantage of Methimazole over PTU is that you only have to take it once per day. I started out on 30 mg which is a fairly high dose and it was nice to only have to take it once. The PTU doses on the other hand are spaced out evenly. I was taking it 3 times a day and now am down to twice.
Another resource to ask is your pharmacist. They are supposed to be drug experts and should be able to advise you about typical dosing of a medication.
Laurel
in reply to: What if we never do RAI or TT? #1179113Hi Sue,
We seem to be in similar situations and are having the same questions. My remission also lasted about 6 years. I am now 40. I don’t feel as completely well on the PTU as I did on the Methimazole last time but certainly way better than hyper. I have been on the PTU for a year now. About 6-7 months ago, we tapered down my dose and I was OK for about 2 months but then crept back up and I am back to a pretty high dose (200mg two times a day).
At my last endo appointment, I asked about what he thought for another remission as we were close to a year but I was on what seemed to me to be a fairly high dose. He said my dose, the size of my enlarged gland, and my initial numbers were looking less likely for another remission. We also talked a bit about RAI and TT. He thinks that TT is underutilized in the US and we are in an area with several excellent surgeon so either is an option for me. We decided to hold off on a decision right then and see where I am at at my next appointment in early June.
I am feeling tired of the ups and downs. While I really enjoyed my 6 year remission, I am also less enamored of the uncertainty of even if I did acheive another remission, do I want to be dealing with this again in the future? What are the odds of acheiving and maintaining a second remission? I have not really been my full self for a year now. That is a lot of time to invest.
Of course, I have been dealing with a bad cold for the last 10 days so my current perspective is based on some extra fatigue. I just feel in a bit of limbo.
Million dollar question indeed.
Laurel
in reply to: Hair loss and muscle cramping/spasms #1178996My hair loss significantly increases anytime my levels change, even if the change is withing the normal range. I think it is just my body’s first response when it senses something is different.
Laurel
in reply to: Anti inflammatory diet #1178788Just add some flax meal to those brownies. Instantly healthy.
in reply to: My total thyroidectomy journal #1178805Thanks Amy! That was very helpful.
in reply to: Anti inflammatory diet #1178781I had the Anti-inflamatory diet recommended to me for our family by our family physician AND a pediatrician who are both on the faculty of our area medical school. It is very, very similar to the Mediterranian Diet. Basically, it stresses enjoying a variety of fruits and veg, whole grains, cold water fish and other sources of Omega 3s. Processed or refined foods are discouraged (white flour, white rice, surgar, etc.). Using other lean meats and moderating intake (not eliminating) high fat dairy – although I use a lot of almond milk as a dairy sub as my 6 year old has a dairy allergy.
It seems pretty common sense healthy to me.
Our doc follows the diet as well for herself and her young family.
Hi Sue,
I also remember a thread not too long ago that talked about adjusting to dosage changes that Kimberly and I had replied to. Probably could find it by looking at the list of my posts under my profile. Anyway, the jist was that we both notice an adjustment period even if the numbers are heading in the right direction. Mine usually takes about 7 to 10 days of feeling worse (fatigue, irratability, etc.) and then I feel better.
Laurel
Here is the thread
http://gdatf.org/forum/topic/43420/in reply to: pregnancy post RAI? #1178701Hi!
Congratulations on your soon to be bundle of joy!
For you, be sure that you are having your tyroid levels tested postpartum. Your body may require a post birth adjustment in your replacement hormone. You will want to make sure you are operating as optimally as possible with a new baby and another child at home. Too much or too little hormone can affect your milk supplies as well.
For both your kids, be sure that their pediatritian or family doc have noted your history in their records.
For the new baby in particular, they should perform a TSH (usually part of the standard newborn screening via heal stick) before you leave the hospital. A second screening is usually (at least in my state – it may vary) 7 to 14 days after birth. The baby’s Dr. should examine the baby closely for the next 3ish month just to be sure that no signs of Neonatal Graves crop up. This would be a very, very, very rare possibility though so don’t stress about it. You have the benefit of already having been a parent so just trust your intuition as you will know your child best if you think anything seems out of oridinary.
Congrats again!
Laurelin reply to: Old to graves, but scared from recent flare #1178691Hi,
A couple of months ago I also had to increase my dosage of PTU (I had a reaction to Methimazole and can no longer take it). One of the questions my endo asked was if I’d been sick at all. I hadn’t but I had been under quite a bit of stress. I assume he was looking for a reason why my Graves hit the gas peddle. I haven’t yet reduced back down to my previous maintence dose and I too am wondering if that will happen. This is my 2nd bout with Graves after a 6 year remission.
I don’t know what the rough dosing conversion is from Methimazole to PTU. It does sound like you could be allergic to Methimazole. I was about a year into treatment with the Methimazole when I developed hives and was switched to PTU. I was also very early pregnancy so they would have switched me anyway.
It is discouraging to have what was working well not be effective anymore. I am much more seriously considering definitive removal (TT or RAI).
Sorry you are having to deal with this new development.
Keep us posted.
Laurel
in reply to: Can symptoms lag behind changes? #1178564Hi,
Glad to read that your anxiety is lessening even with the reduced dose of the beta-blocker. That could be a good indidicator of a reduction in thyroid hormone.
As for the other symptoms, my personal experience is that whenever my levels are changing (even in the right direction or withing the ‘normal’ range), it feels like my body fights the change. My body just doesn’t seem to like it and thinks ALL change is bad. I have increased fatigue, muscle aches, palpitations etc. until my body adjusts to its new ‘normal’.
The other thing that I sometimes suspect is that my thyroid is like a car engine and that the GD is pushing on the gas peddle inconsistently. Sometimes it gives me a quick extra ‘rev’.
Take care,
Laurelin reply to: Can symptoms lag behind changes? #1178563Hi,
Glad to read that your anxiety is lessening even with the reduced dose of the beta-blocker. That could be a good indidicator of a reduction in thyroid hormone.
As for the other symptoms, my personal experience is that whenever my levels are changing (even in the right direction or withing the ‘normal’ range), it feels like my body fights the change. My body just doesn’t seem to like it and thinks ALL change is bad. I have increased fatigue, muscle aches, palpitations etc. until my body adjusts to its new ‘normal’.
The other thing that I sometimes suspect is that my thyroid is like a car engine and that the GD is pushing on the gas peddle inconsistently. Sometimes it gives me a quick extra ‘rev’.
Take care,
Laurelin reply to: Never Rains, but it pours! #1178508Hi Karen,
That would be disconcerting. You said that it had been over a year but is there any possibility that the Graves could have been supressing your cycles instead of menopause? I of course have no idea if that is the case for you but it occured to me as a possibility.
Take care and let us know how it goes.
Laurel
in reply to: Finally Diagnosed with Graves’ Disease #1178472Hi,
So glad you finally have a diagnosis and that you are getting started on treatment.
So sorry that you were subjected to such an ignorant, unhelpful, and hurtful comment. There are a few individuals who do struggle with weight after treatment but my sense is that if you are on the proper dose to keep your thyroid hormone at the YOUR normal, then it will probably not be an issue.
I am on my 2nd round of ATDs after a 6 year remission. I have not had any weight issues that a bit more excercise wouldn’t take care of. In fact, my weight is fine, I just need to find the time to be more fit.
Oddly enough, I recently found out that one of my children’s teachers has been on PTU for about 18 months. She is very slim and doing well.
Try to put his uneducated comment out of your head. It was just plain wrong.
Take care and keep us posted.
Laurel
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