[LaurelM]

in reply to: Help With Phobia #1173074

Hi,

As for the number of pills needed, it can really vary. On my first bout of GD several years ago, I was started on a fairly high dose of Methimazole (I don’t recall exactly) which was tapered down pretty quickly. I only had to take it once per day.

This time I’m on PTU. I noticed that it takes more pills to equal that of Methimazole and I have to take it more often. My initial dose (and a pretty big one) was four 50mg 3 times per day. I was also on 5 pills of the Atenolol. So, my grand total was 17 pills plus my calcium and vitamin supplement but I use the fruity gummy ones just like the kids The pills are all very small which makes them easier to take.

I’m off the Atenolol and the PTU has been reduced to 4 in the AM and 4 at bedtime. I’m hoping we can drop it further at the end of this month. I’ve been feeling so much better – not running any marathons or anything but significantly better.

I prefer to avoid medications/pills in general. Note that I use the gummy vitamins. I suffer my seasonal allergies without them and the cramps have to put me in bed before I take anything for pain. However, I know I have to right now so that I can be a healthy mom for my children.

I’m thinking good thoughts for you on this difficult journey.

Laurel

[LaurelM]

in reply to: 2nd remission #1172815

Thanks Kimberly! I’m sure it will be part of my discussion with my endo when we get to that point but I also like to have done my own research so that I can have an informed discussion.

[LaurelM]

in reply to: What to ask? #1172786

Glad to see the visit with the new endo went well!

[LaurelM]

in reply to: 2nd remission #1172813

Hi Claire,

I was kind of wondering the same thing. We have a similar situation.

Thanks for the numbers Bobbi. I wonder if there are any newer numbers regarding 2nds remissions. I had been looking but haven’t really found anything.

Laurel

[LaurelM]

in reply to: Crying Fits…Is this normal #1172803

Hi,

My first time on ATDs I remember it taking about 3-4 weeks before I noticed things changing. At about 3-4 months taking the meds, I felt signficantly better a lot of the time but I would say it took many months at stable levels to feel completly well. I continued to have ‘off’ days for a long time but they became fewer and farther apart until they were gone and I was officially in remission.

Take care!

Laurel

[LaurelM]

in reply to: 1st Follow-up appt. today #1172631

Hi Caro,

This is actually my 2nd go around with GD. This time I’ve been in treatment for about a month now. I was first diagnosed after my first baby was born about 7 years ago now. I had about a 6 year remission (normal thyroid levels w/o medication). I was on Methimazole last time and it worked great for a long time until I developed hives. I liked Methimazole vs. the PTU. I’ve had to take the PTU multiple times per day and more of them. The Methimazole was fewer pills and only once per day. The risks of side effects are fewer with Methimazole as well.

My TSI was between 450 & 500. I didn’t write down the exact # as that wasn’t particularly important to me as his impression of how far out of range it was. The normal range at my lab is less than 130. He said he as seen them upward of 800-900 but those are rare. Last time mine was initally under 200 so it is significantly higher.

I do feel lucky to have found a great endo. He actually called me twice while on his vacation when first starting treatement so that he could adjust my dose of Atenolol. I haven’t ever felt rushed or pressured. His goal is just to get me into a safe and stable range first and then we will go from there. We do get better. It happened last time and it will happen again – just a little faster would be nice though.

Laurel

[LaurelM]

in reply to: breastfeeding with Graves? #1172557

Hello!

So sorry you and your little one have to deal with this.

I was told to breastfeed both of my babies but we didn’t have to deal with neonatal GD so our situation was not quite the same.

I would take confidence from what the pediatric endo tells you but if you are still uncertain, it is always OK to get a second opinion. If you decide on a second opinion, I’d recommend trying to find another pediatric endo as they are the experts in your scenario.

Best wishes for this stressful time and keep us posted!

Laurel

[LaurelM]

in reply to: GD and breastfeeding #1172524

Hi,
I’m so sorry you are in this position. It is really an emotional issue to determine what is best for both you and your baby while struggling with hyperthyroidism and treatment options. Without question, you do need treatment.

I was in a similar situation after our first baby. She was 8 months old when I was diagnosed and we were breastfeeding. I was put on Methimazole at a fairly high dose at first and able to taper to a lower dose fairly quickly. I was really freaked out by the thought of using a medication but also heartbroken to give up nursing. My endrocrinlogist reassured me that continued nursing was better for my baby than the very small and managable and reversable risk of exposure. I wasn’t completely convinced and so checked with my baby’s doctor. She was fine with it as well but also consulted the pediatic endocrinologists at our regional children’s hospital. They were also fine with it and all said that the benefits of continued nursing outweighed the risks for us – by a lot. To error on the side of caution, we did monitor her levels at about 3-4 weeks to start and then about 5-6 weeks after that. I have to be honest and say that having to put her through the heel sticks was really hard but they were at least quick. We continue nursing for several months until she decided to wean herself. I also got pregant with our second about that time but that is another story (that has a happy ending as well).

One source I checked is the American Academy of Pediatrics policy statement on the transfer of drugs and other chemicals into human milk. Both Methizmazole and PTU are listed on the table for medications ususally compatible with breastfeeding Table 6.
http://pediatrics.aappublications.org/content/108/3/776.full

With all that said, it may not be safe for everyone, and you should consult with more than one doctor until you are comfortable with whatever you and your medical team decide.

Best wishes,
Laurel

[LaurelM]

in reply to: Employment #1172420

State administed programs really can vary significantly from state to state both with the type of benefits available and eligibilty requirements. Usually these programs are a mix of federal and state dollars. This gives the states some leway in how they administer the progams (within some federal limits).

Since she has children, she may qualify for cash (State of WA calls it TANF or Temporary Assistance to Needy Families), medical, and/or food assistance benefits. It all depends on complicated eligibilty based on income and resources. Some types of income and resources are counted against the maximum limits to qualify and others are disregarded.

In WA a TANF recipient may be deferred from work search requirements of these programs based on a medical reason. States will also facilitate the application for federal benefits if it appears that the client may qualify. (States would prefer to have the client on all federal benefits rather than a mix of state and federal dollars.)

It is best to find your local social services office for your state and start your application process there.

[LaurelM]

in reply to: Employment #1172416

Hi,

There are both Federal programs and state programs. Have you applied in both places? The state programs vary from state to state. State programs are generally easier to qualify for and quicker with the application process. Because you have children, there are non-disablity family programs for which you may qualify depending on your income and resources. I used to administer programs for the State of Wa. I can’t promise that you would qualify but you should at least apply.

Best wishes,

Laurel

[LaurelM]

in reply to: Tapazole reaction??-now what?? #1172363

Hi,

I thought I would toss in my 2 cents regarding my current relapse. When I noticed my symptoms I got in right away for a level check. I had also been having regular checks just in case. I think I caught it pretty early and I don’t feel nearly as sick as last time even though my endo said my levels were 4-5 times higher than the range. I’ve only been on meds about a week and I’m starting feel a difference. I think those of us who experienced remission if we are paying attention and get regular checks can catch it before we have been sick too long and then hopefully will feel well again that much sooner. Just my own opinion – I have no other evidence to back it up.

Laurel

[LaurelM]

in reply to: My decision #1172323

Hi,

What you and your husband decide regarding family size is nobody else’s business. Even if health reasons were not a factor, there are plenty of great reasons to decide that one child is the exactly right number.

This was my experience but in no way am I suggesting that you should or should not consider a second pregnancy:

I also had a toddler and was possibly in remission (very low dose of ATD) when we got pregnant with our second. The first year of our older daughter’s life had been indescribably rotten. I was so sick. We were all expecting that after the birth of our second daughter, that I would relapse. I don’t know why I didn’t but I experienced about a 6 year remission. There was alot of worry. I worried about having to start the pregnancy on ATDs and I worried about having to go back on them while breastfeeding. So much worry. I feel very fortunate to have had great medical care and the best possible outcome. I have two happy and very healthy children.

I know that all people with an autoimmune disease share a genetic defect that just needs a trigger to set it off. It is not a guarentee that it will. My grandmother had GD. None of her 3 children have an autoimmune disease. I am the only one out of the many grandchildren to experience one. Yes, it was an awful, awful year for me and right now I am dealing with a relaspe. But, I think I caught it much sooner and I don’t feel nearly as sick as last time. My house is a bit dirty but I’m still getting my kids to all their activities.

I would not have choosen a pregnancy while still in treatment but now I feel lucky that circumstances worked out the way they did.

Many of my friends have choosen to have one child and they are very happy with that decision. They have a ton more flexibility as a family than we will ever have.

Do what feels right to you and do not allow yourself to be badgered about your decision.

Best wishes,
Laurel

[LaurelM]

in reply to: Dark Patches On Face??? #1172239

Hi Kari,

It could be Melasma. Melasma is mostly associated with pregnancy but my endo said there is also an association with thyroid disease. I had Melasma my first episode with GD. It eventually faded but I had to be very vigilant about protecting my skin from all sun exposure as that will make it worse. There are over the counter skin lightening creams available but you should talk to you Dr. before trying anything and to confirm that is what it is. I decided to let mine fade naturally as I didn’t want to use the cream but it took several months for it to fade. People kept asking me if I had a black eye.:rolleyes:

Laurel

[LaurelM]

in reply to: Okay. What would you do? #1172209

Hi!
My first go around with GD was after my first baby. I was 8 moths postpartum when diagnosed. I was put on methimazole at a pretty high dose at first which taped down pretty quickly. I was able to continue nursing. My daughter was 13 months old when I became pregnant with our 2nd and I develped hives. She self weaned about a month later. Because of the hives and the pregnancy (either would have been sufficient) I was switched to PTU which I was on for a very few weeks of my first trimester. I didn’t keep much of it down due to morning sickness.

What I’m trying to get to is, in consultation with your doctors, it may possbile to nurse safely on the ATD. And, if you don’t tolerate the PTU, you can then wean or choose surgery if possible. My endo wanted me to continue nursing as he felt it was better for both me and our baby but I also know that if medical circumstances had required definitive treatment he would have guided me through the decision.

I don’t know if that was helpful. I hope it was. I know it’s an unsettling place to be in.

Laurel

[LaurelM]

in reply to: Graves’ treatment prior to pregnancy… #1169867

One thing that I didn’t mention was that Mother Nature scheduled our 2nd baby earlier than we had been thinking. I was still on the Methimazole and was switched to PTU right away. I was able to stop taking it within about 6 weeks but having been on the ATD during a critical period of fetal development was again a huge worry. I actually did go into remission with the second pregnancy and have remained in remission for 5 years. I confess that I feel great and that both my children are very healthy and happy kids. That said, I probably would not have choosen that path. I would have felt far more comfortable having had the possibilty of recurrance removed and no need to take ATDs during pregnancy or while I was nursing. As is turned out, my youngest had a severe dairy allergy and I had to go milk free. I ended up being her best source of nutrition for 2 years – she could not use even the hypoallergenic formulas. It would have been a train wreck if I couldn’t nurse due to treatment. It was very stressful. I would have easily traded my remission for a little more peace of mind.

Another thing to think about, is that if you do have a recurrance after delivery, you are sick again (hopefully they catch it early) but now you also have a baby to take care of. I was really sick after our first. I feel like there is a lot of her first year that I just don’t remember and there is no way to get it back. I feel robbed. I could barely stand up if I was holding her.

A friend of mine had thyroid cancer. She ended up having a total thyroidectomy and RAI at a much higher dose than Graves patients receive. She was required to be in a special hosptial room after her RAI for a couple of days. She waited several years (hadn’t found Mr. Right) but she now has a healthy and happy 2 year old. Her Dr. closely monitored her replacement hormone and adjusted as necessary.

Just some thoughts about my experience. I hope I wasn’t too rambling.

Laurel

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