[mamabear]

#1071386

Hello and welcome.
I read the article, have to reread when I have the chance. But Please look at the 10th paragraph of that article as it states about PTU and it is still drug of choice during pregnancy.

In answer to your question, I am someone who was trying to get pregnant but couldn’t, was diagnosed with graves and said not to get pregnant till levels were better. I went on PTU, was able to get pregnant and was taken off of the ptu due to being pregnant was helping my levels and bringing them up to high so taken off the ptu so the body could adjust on it’s own. Was able to have the baby which happened to be #2(1st was 8 years before that), then I was able to get pregnant again shortly there after (i was not on PTU during this time at all). I was pregnant with #3 and was fine and it wasn’t until after I had #3 and me and #2 were sick that I had to take PTU again. I was fine off the meds for a while(per dr’s orders go off so I can achieve remission) but then I had to go on them again. I did that and went off did fine, then got pregnant with #4 and was fine during that time and then had to go back on them again for a short time and was taken off and have been fine in remission for almost 2 years. I was also told that I had a mild case of graves disease, no nodules either.

this is the short story. I am usually one who can write a book but I have no time right now but wanted to say yes there are girls out there who were graves patients and then got pregnant.

Please do yourself and your future baby a favor. WAIT to get pregnant. Don’t let it happen accidentally and then wind up with a problem. Get your levels right then try. I say this because your body is sick and your eggs are weak. Mine were and it is no fun thinking you will get pregnant then find the little stick says negative. Stress will not help in getting pregnant. So get better first and know that it will happen but lets see it happen with a healthy you not a sick you. (also I was seeing a reproductive endocrinologist at the time as well).

[hyperm]

#1071387

Hi welcome.

Ok this is going to be a long post I suspect – brace yourself. Firstly, I am going for surgery and I have been on thyroxine before and wasn’t told of any dangers just to look out for the ATD and yes I have had the low WBC etc….

Most importantly if you were asking my advice I would say wait until your levels are sorted before trying to conceive. I don’t really want to tell you this as I don’t want you to worry but I had 2 miscarriages and was attending a specialised endo/gyn clinic. I was told that the risk of m/c is 3 in 4 for GD thyroid patients. ” title=”Sad” /> I lost my 2 babies within 6 months ” title=”Sad” /> . I then decided that I wasn’t going to try again for at least a year as I was so traumatised and it wasn’t fair on my little boy (who is now 4). Well I fell pregnant 2 months later – complete shock , however I was carefully monitored and now have a healthy little boy. My endo asked me prior to falling pregnant if I wanted to gamble and come off all meds as I had been on them for 2 years without a break – the next month I was pregnant and I stayed off all meds throughout my pregnancy.

With the first baby I lost I was changed onto a low dose of PTU and the same with the second. To be honest though I have to believe that my little ones weren’t meant for this world and although hard to accept – it was God’s will.

With my last little boy it was a very long pregnancy for me with lots of careful monitoring and I would go through it all again without a complaint – however, if I was advising someone I would say try and wait until they say everything is looking ok. However, again I also believe that if they are meant to be here then they will. Over in the UK you attend a pre-pregnancy clinic and then early pregnancy clinic.

With regard to treatment I would give the meds a go, however having been hyper and hypo myself (and many others may have different tale to tell) I would rather be hypo and take the thyroxine than be hyper and therefore am having surgery after my current post partum flare up.

I hope that is of some help and if you want to PM me please feel free to do so..

M xxx

[trixytee34]

#1019398

Hello there. So glad I found this website! I have been recently diagnosed with GD and was given three different options for treatment. (1) medication. (2) surgery. (3) RAI.
I was told that there is a good chance that if I have either surgery or RAI that I would be kicked into HYPO and will need thyroid replacement for the rest of my life? The medications have a list of health issues to be aware of for GD so are the medications for HYPO just as risky?? I am trying to figure out if its better for me to try to fight GD/HYPERthyroidism with medications or would it be best for me to have either surgery or RAI to knock out my thyroid and be treated for HYPO for the rest of my life??
It has been pretty confusing but I have decided to try to medication route first since it seems to be less invasive(???). I am getting ready to start Tapazole after my ENDO said there was a new article released this last week (http://www.aacepatientsafetyexchange.com) about the risks using PTU and liver failure and that PTU is no longer the first treatment recommended for GD.
ALSO…I am wanting to become pregnant but have been told by both my OB/GYN and ENDO that my thyroid needs to become regulated before trying to get pregnant since miscarriage is pretty high if left untreated along with other factors. Strangely enough, PTU is what is used for pregnant women at low doses since TAPAZOLE has higher birth defect risks??? I was even told that there is a 30% chance that I may not need to be on any medication if/when pregnant since pregnancy tends to eleviate the anitbodies created?
Is there anyone out there that has been diagnosed with GD prior to becoming pregnant, did or did not have treatment while pregnant, had difficulties or no difficulties ? Tried medication without regulation and needed to take the more invasive route?
I have mild symptoms but have noticed with time that I have had symptoms that I brushed off and blamed on getting "older", being female and hormonal….all of the above! UGH!! SOOO much to learn…

[Ems]

#1071388

Hi There – I have been reading the posts on this site for weeks and have learnt so much. One thing I went and did was get a hardcopy of all my blood tests and history.. so that I have all the information I really reccomend this. I would really recommed you wait until you are well, because the chance of miscarriage is huge – I had several after the birth of my first daughter and then got pregnant and was on a low dose of PTU so not ideal in many ways, but all worked out in the end with the birth of my second daughter 5 years ago. I have since had a couple of flare ups, one required no drugs and was probably triggered by a virus but now I am on PTU and have been on this for 3 weeks and feeling amazing – my TSH is still very low but my T4 is just in normal range and my T3 just in normal also. You do have to watch your white blood cells as mine are already becoming low and the neutrophils very low – my endo will advise me next week, to take the dose down or what?
Yes your so right there is so much involved and this is a great way to learn more, I have changed my diet, I dont have any caffeine, or artificial sweetners etc and am just entering a really exciting phase of really looking at my nutrition and lifestyle – I know it can be done but like the other posts say its going to take sometime and I will have to be patient – because it is a long journey – good luck Emsx

[trixytee34]

#1071389

Well.. It’s been 6 days since I started the methimazole. I was a little nervous to start the medication with all the risks and side effetcs but am anxious to get regulated so I can start planning to add to my family. Speaking of which… I am TERRIFIED to get pregnant while taking Methimazole. There are so many warnings about birth defects. I have not only heard it from my Endo but received the info slip with my prescription, in BOLD letters, it clearly says to avoid pregnancy while taking the medicine. I am practicing birth control with OTC methods since my OB/GYN says he wants to avoid putting me on any hormonal birth control at this time. Needless to say..my husband has been a bit negelcted in that department. I realize I just need to take it one day at a time, but am really bummed having to deal with this "crapiola" and GD.
I have felt a bit more tired at the end of the day and am a little nervous about gaining weight with the medicine treatment. I have also noticed a few lower back cramps along with feeling a little more thirsty and wanting to drink a lot more water than I usually do. I have a follow up June 15th to go over my labs and thyroid levels and am anxious to see how I am reacting to the medication. I have really appreciated this website and all of your comments as I am learning more and more about GD.
On more question…. anyone been told by their Endo to stay away from shell fish? I am curious since I LOVE seafood.

Thanks again!

[Ski]

#1071390

My doctor never told me to stay away from shellfish, but I know some doctors do ask patients to limit iodine intake. For the most part, the iodine level in foods is not particularly high (except kelp/seaweed, which is specifically mentioned as something we should avoid), but if you routinely eat a LOT of shellfish, that may be one reason the doctor mentioned restricting it. Iodine goes to the thyroid and is made into thyroid hormone, so limiting the supply of iodine may keep the thyroid from producing as much hormone. When your disease is most active and you’ve just been diagnosed, every little bit helps.

[trixytee34]

#1071391

well, I spoke to my Dr’s office today due to the increasing lower back aches and and abdominal aches, they come and go for the last 3-4 days. Plus, I had a mild fever last night that broke with a cold sweat. SO..needless to say I have had to withhold todays dose until tomorrw when I speak with my Dr. directly. GREAT TIMES! ugh!! I am really hoping I am not one of those few to have side effects. I really do not want to have surgery or do the RAI. Both are so invasive (RAI is too much since I am a stay at home mom with a toddler).

[Hopeful23]

#1071392

welcome. i know u are afraid and have questions. i am 24 and swore off rai. However after being one of the people having the rare side effects to the medications i chose rai. It is not invasive at all. I took two pills this past tuesday at nine am and went grocery shopping at ten am. i had no restrictions except sleep alone wash dishes clothes and flush toilet twice for two days. I was not confined to my room or treated like i had the plague. I am four days into my treatment and am so happy to be on my way to recovery. My sister is hypo and she takes one pill a day. She says its second nature to her. i was scared to but i just want it to be over. Hypo is more easy to live with. Synthroid is so close to naturul hormon. Radioloiist says this is safe and easy. I would do it. Much easier.

[CMoore416]

#1071393

Just wanted to give you a little bit of my experience. I was rx with GD about 10 years ago when I was 26. I had to "bout" if hyper that regulated on its own without meds. The first time it just went back normal. It took me 2 years to get pg with my daughter but had no complications. About a year and half after the birth – I had my 2nd Hyper round. This time it made me ovulate on day 7 – thus resulting in getting pg with #2. I was monitored and levels regulated (they say pregnancy helps) I had my son 2 weeks early – they think it was a complication "maybe" from GD. About a year and haf after that birth – I had my 3rd Hyper round – this time worse than ever. After many crazy days (literally) I went on Tapazol (Methimazole) and was fine for 2 weeks. I come down with MAJOR hives for 10 days and had stop the tapazole. I switched to PTU and have been on that for 3 years. I have asked if it sok to be on for so long and my Dr’s feel t works for me so why change (I currently am on a low dose for maintaining the levels Im at) I often wonder if RAI would be better but maybe I will choose that in the future if this stops working. I never had any other side effects or issues on PTU.

Hang in there – but dont get pg until your GD is in order. Pregnancy (and motherhood) is stressful and stress and GD dont work well together.

Feel free to email me if you want to chat or vent. I have been through hell and back!! It will get better!!
Christina

[trixytee34]

#1071394

Thank you all so much for your postive comments and stories that you shared. It has been a comfort to hear from people that have gone through the experiences since this is all so new to me.
I went back to my Endo yesterday and he ran all sorts of blood work to make sure I wasn’t having any major side effects since I was experiencing the kidney cramps and had a tender spot in my mid abdomen area. Dr. was very aggressive with making sure I wasn’t having Gall Bladder issues and ordered a STAT ultrasound to be sure. It was a little overwhelming to be told we needed to know ASAP to make sure I wasn’t having an issue that would result in surgery. I had NO IDEA how serious it would be if you are HYPER and not regulated before having to go through surgery. Fortunately, ultrasound and all blood work came back good except for my TSH…of course. Although, it did increase from .004 to .010 being on Tapazole for only a week.
My Endo has put me back on the Tapazole since the kidney cramps are suggestive of a mild infection that my primary Doc is following up on me for. I have hopes that I will react positively to the Tapazole with no other concerns. I was also prescribed a beta blocker since my heart rate is elevated at rest (84+) and I have been experiencing those "lovely" heart palpatations that I am not too excited about ” title=”Confused” /> . I was hoping I would avoid some of the symptoms of GD but my Dr. seems to think he caught my GD at it’s early stages so he expects me to start noticing other symptoms that come along with the disease. Gotta love it!
It has been a relief that I can turn to this website and read your stories to find out even more info and learn, in laymens terms, what the heck my Dr. just told me.
Thank again!!

[heather013079]

#1071395

I’m new to the board, and in a similar situation. I was diagnosed with GD in January 2008, shortly after having our first baby. I had all the symptoms of GD – heart palputations, dry eyes, weak muscles, weight loss, etc. My endo put me on PTU because we were hoping to get pregnant again within 6-12 months. After 8 weeks on PTU I was diagnosed with drug induced hepatitis (rare side effect of PTU) and had to discontinue immediately. I switched to Methimazole (Tapazol) and my GD has improved (my liver is totally recovered as well). I started at 20 mg Methimazole / day, and am now taking 5 mg every other day. My hope is that I am able to stop taking the medication (soon), achieve remission, and then become pregnant. It’s a lot to hope for, I know. My endo is sensitive to our desire to have more children, and supports my 2nd choice of surgical removal, but I’m really hoping my body will heal itself.

My endo does not recommend becoming pregnant on Methimazole; however, at the point I was taking 5 mg / day, she indicated "it would not be the end of the world" if we became pregnant, as many people have successful pregnancies, with no complications, taking both Methimazole and PTU, but she tends to be more cautious and prefers we wait. So, we’re waiting…

[julies]

#1071396

I am so happy to hear that the methimazole has worked for you ” title=”Very Happy” /> I am on the same medication, have been for three weeks. How long did it take for the medication to work for you? and how long before you could cut down?

Julies

[heather013079]

#1071397

I’ve been taking methimazole just over 1 year. My endo had me at 20 mg / day initially, and I went hypo pretty fast. I’d say within 8-10 weeks. So, we backed it down to 10 mg / day. I was still feeling really tired, and after 3 months or so I reduced my dose to 5 mg / day. Just within the last month I’ve been at 5 mg every other day. I have my next appointment with my endo in September. If my levels are normal, I’m going to stop the medication and monitor closely. I’m really hoping it works out. I’d love to stop taking the ATDs. If I am unable to go into remission, I will probably opt for surgery because we’d like to get pregnant soon.

[jillie74]

#1071398

I was diagnosed just a few weeks ago and was prescribed PTU. I only started the medication today, but have now seen an article from the FDA posted just June 3. Is it better to be on an alternative medication or are both options the same risk for side effects?

[Ski]

#1071399

Typically, if you’re going to achieve remission on ATDs (either PTU or methimazole), you need to continue on some dose of the medication for up to two years. Those who stay with it longer have higher success rates for long term remission.

The recent FDA bulletin about PTU was mostly a caution for children taking PTU. Both have the potential for the same side effects, but PTU has led to liver failure in a small percentage of children, while methimazole has no history of liver failure. Liver enzyme imbalances can happen with methimazole, but failure has not been recorded, so in an abundance of caution, considering even the smallest chance of liver failure, PTU is now not suggested for use by children.

Discuss this with your doctor and see what they think about each of the medications. PTU has the most downsides ~ you must take it several times a day, it tastes foul ~ but those are OUR troubles, the doctor typically has "suggestions" to deal with that successfully. ” title=”Very Happy” /> Again, which medication you use CAN be up to you, so discuss with your doctor, and if you feel more comfortable trying one than the other, make your wishes known, and ask for a prescription for the one you want.

[Author]

Posts