Baby wish
Strumazol and pregnancy: is it dangerous? Read this if you have thyroid issues!
jill
I'd like to share the following with you all..
3 to 4 years ago, it was discovered that my thyroid was working too fast. I got medication for this. Strumazol and tirax. However, I then became pregnant and inquired about this medication use. With both the GP and the internist. They said it wouldn't do any harm. But after 8 weeks of pregnancy, the internist still decided to switch to another medication. PTU. The pregnancy and birth went well. I did give birth 4 weeks and 2 days early. He came out and immediately we saw that something wasn't right. He had a piece of intestine growing out of the umbilical cord. He was operated on directly for this in another hospital. Fortunately, he's doing well now. As he grew a bit older, we also found out that he was deaf on one side, had two openings, multiple hair whorls, poor motor skills in the first months, a harmless heart murmur, and on the left side, his ear was slightly different from the other ear, a bit of a protruding ear.
For this, we went to a clinical geneticist, who told me almost immediately that he probably has the strumazol syndrome. He had done research last year after there was another child with many of the same signs. And it turned out that it was caused by the medication.. I hope to be able to warn everyone who is pregnant or wants to become pregnant not to use strumazol during your pregnancy. This research is quite recent and I don't know if it's already recognized. But please warn everyone who has a thyroid problem about this. Thanks for reading my story, greetings Jill
3 to 4 years ago, it was discovered that my thyroid was working too fast. I got medication for this. Strumazol and tirax. However, I then became pregnant and inquired about this medication use. With both the GP and the internist. They said it wouldn't do any harm. But after 8 weeks of pregnancy, the internist still decided to switch to another medication. PTU. The pregnancy and birth went well. I did give birth 4 weeks and 2 days early. He came out and immediately we saw that something wasn't right. He had a piece of intestine growing out of the umbilical cord. He was operated on directly for this in another hospital. Fortunately, he's doing well now. As he grew a bit older, we also found out that he was deaf on one side, had two openings, multiple hair whorls, poor motor skills in the first months, a harmless heart murmur, and on the left side, his ear was slightly different from the other ear, a bit of a protruding ear.
For this, we went to a clinical geneticist, who told me almost immediately that he probably has the strumazol syndrome. He had done research last year after there was another child with many of the same signs. And it turned out that it was caused by the medication.. I hope to be able to warn everyone who is pregnant or wants to become pregnant not to use strumazol during your pregnancy. This research is quite recent and I don't know if it's already recognized. But please warn everyone who has a thyroid problem about this. Thanks for reading my story, greetings Jill
Replies
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feyzan #2
Hi Jill,
Hope you read my message and can get in touch with me.
Kind regards,
Mother of Feyzan (Perihan) -
bibinijmegen #3
I know it can be dangerous for your baby, I understood that from my doctor, so you really should stop. Good luck! I'm in the same situation now, without medication. -
milijaar Guest #4
Now that I've read all this, I'm really not doing well. I've already been taking Strumazol for 2 months. After getting quite sick often, I had blood drawn, which showed that my thyroid was working way too fast. At first, they said the value was over 5. After an ultrasound and a scan of my thyroid, it turned out the problem wasn't coming from my thyroid. No inflammation, no tumor, nothing. The only reason they could give me was that I'm absorbing too much iodine. They still have no explanation for it, and the specialist told me they probably will never know either... I was advised to take one 10mg Strumazol. When I noticed that my heart rate still hadn't improved after 3 weeks and I had blood drawn again, it turned out that my thyroid value had gone from 5 to 8, so it was clearly getting worse... Now I'm taking 3 times a day one 10mg Strumazol... The thing is, I want a baby so badly... But after reading your explanations, I just can't... Damn it... I'm really not doing well... It's still not going well for me. After already 2 long months... I'm really desperate.... -
milijaar Guest #5
Now that I've read all this, I'm really not doing well. I've already been taking Strumazol for 2 months. After getting quite sick often, I had blood drawn, which showed that my thyroid is working way too fast. At first, they said the value was more than 5. After an ultrasound and a scan of my thyroid, it turned out the problem wasn't coming from my thyroid at all. No inflammation, no tumor, nothing. The only reason they could give me was that I'm absorbing too much iodine. They still have no explanation for it, and the specialist told me they probably will never know either... I was advised to take one 10mg Strumazol. When I noticed that my heart rate still hadn't improved after 3 big weeks and I had blood drawn again, it turned out that my thyroid value had gone from 5 to 8, so it was clearly getting worse... Now I'm taking three times a day one 10mg Strumazol.. The stupid thing is that I want a baby so badly... But after reading your explanations, I just can't... Damn it... I'm really not doing well.. It's still not going well for me. After a long 2 months.. I'm really desperate.... Thanks for letting people know who might benefit from knowing this. -
Kikker #6
Oh my goodness.. tomorrow I have a second, specialized 20-week ultrasound because something wasn't right the day before yesterday. I was also told that Strumazol was little harm (the thyroxine was a bigger danger, but I hadn't started taking that yet) but PTU was better. So after 6 weeks of pregnancy using Strumazol (which I had been using for a year unsuccessfully - i.e., with a still overactive thyroid - I switched to PTU. After 2 weeks I decided to stop completely in the hope that my thyroid would stabilize on its own. Since week 18 this has been the case... tomorrow I'll hear more if something really is wrong and if so, what...
It's really upsetting to hear that your babies are really having to endure the consequences! Don't let it slide! -
Bella Guest #7
I'm startled by these messages about Strumazol during pregnancy...
I gave birth to a perfectly healthy daughter in 2008. And I took PTU throughout the whole pregnancy due to Graves' disease.
Now I'm 8 weeks pregnant again, and according to my internist, I can use Strumazol this time. He mentioned that recent studies showed that Strumazol can be used during pregnancy. But now that I read this, I have serious doubts....
I also have extreme hair loss. Does anyone else recognize this problem??? -
Kikker #8
Hi Bella, just saw your message come in. After the 20-week scan, it turned out my baby had a growth restriction. Everything seems to be developing well though. I've had a turbulent time, but now that I've been on leave for 3 weeks, the growth has caught up so much that the baby is back within the limits. I have to say; all the internists say that Strumazol won't do any harm. And I've asked about it in three hospitals now. It could be a coincidence. So I'm waiting with bated breath for the birth.
Discuss with your internist whether you can just stop taking Strumazol. Usually, your thyroid stabilizes automatically during pregnancy due to all the maternal substances *hormones
that are being produced. Even mine went from 25 back to an acceptable 10 in no time. So it wasn't even stable when I stopped taking Strumazol. Every 3.5 weeks I get poked and checked.
For everything: less medication is better!!!! -
bella Guest #9
Hi sweetie,
Thanks for your quick reply....
It's so nice that you've already seen on the ultrasound that your baby is developing normally.
I'm now only using 5mg of Stumazol per day. So not that much. But I should indeed consult with my internist about it....
I've now arranged to have my blood drawn every 4 weeks. And then he'll see how things are going.
I hope you can now enjoy your pregnancy and that in a few weeks you'll be able to hold a healthy baby in your arms!!!!
At the moment I'm not enjoying it so much...worries about the extreme hair loss (afraid I'll really go bald) and this Stumazol is making me doubt!!! So sad...last time I really enjoyed a carefree pregnancy...despite the Graves'. -
bella #10
Hi sweetie,
Thanks for your quick reply....
It's so nice that you've already seen on the ultrasound that your baby is developing normally.
I'm now only taking 5mg of Stumazol per day. So not that much actually. But I should indeed have a chat with my internist....
I've made an appointment to have my blood drawn every 4 weeks. And then he'll see how to proceed.
I hope you can now enjoy your pregnancy and that you'll be able to hold a healthy baby in your arms in a few weeks!!!!
Right now I'm not enjoying it so much...worrying about the extreme hair loss (afraid I'll really go bald) and this Stumazol is making me doubt!!! What a pity...last time I really enjoyed a carefree pregnancy...despite Graves. -
Anonymous Guest #11
I'm also a thyroid patient and really want a second child. But it's not allowed for now...
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Anonymous Guest #12
I had slightly elevated levels and have been taking 1x 10mg Strumazol per day for 2 months now. Still have 2 weeks of 1/2 pill, and then they'll switch me to another medication that's safe for pregnancy. (My levels are already stable again).
The specialist assures me that Strumazol leaves my system quickly and that getting pregnant after stopping it won't be a problem.
I can't find anywhere online how soon you're allowed to get pregnant after stopping Strumazol.
I really want to get pregnant again -
karolien Guest #13
Hi,
Lij has been diagnosed with an overactive thyroid, as well as Graves' disease...
The endocrinologist suggests removing the thyroid, but I'm not really on board with that.
I've been reading that there's another medication you can continue taking during pregnancy; what is it?
So I really want to get pregnant, but I'd like to keep my thyroid. I'm currently taking 2 x 10 mg of Strumazol, having come down from 3 x 10 mg, and I'm also taking Inderal to suppress the palpitations.
Phew... According to the scientific leaflet the doctor explained to me, it basically says you should try to take as little Strumazol as possible, but it doesn't explicitly say that the baby could suffer significant harm... -
Roos #14
I was very sick in January 2013 and went to the ER (night shift doctor). After an examination, I was diagnosed with a pulmonary embolism and an overactive thyroid. I used blood thinners for half a year. In the meantime, I also took Stumazol and later Tirax. I MUST NOT BECOME PREGNANT. It was not good for the child's development. I later found out that I wanted to become pregnant after treatment with a medication containing radioactive material, and I must wait 6 months after that to become pregnant. I got it in April 2014 and became pregnant in October, but unfortunately, I had a miscarriage at 7.4 weeks in December. Now, in April, I am still trying to get pregnant. In the meantime, I have had blood drawn continuously, and my thyroid is completely fine; it doesn't work too fast or too slow. Every three months, I have had blood drawn, and now, after half a year, I recently had blood drawn, and it was good. I would not recommend anyone to become pregnant while using Stumazol. That's what I got from my doctor at the hospital. -
Kimxx #15
Oh my, what terrible stories! Now I'm dealing with the following: My husband also has an elevated thyroid hormone level and has been taking medication for it for over half a year. He thinks this is the cause of the miscarriage, but we're not sure. We're going to check this tonight when we're home! Does it also affect the baby and/or the pregnancy if the father takes these medications, or only if the mother takes them? We've been trying for 5 months now and so far no result for our first child, but reading this makes me really anxious! I hope someone can answer my question!
Thanks in advance! -
Roos #16
I don't know if it affects pregnancy when your husband uses it. But as far as I know, someone with a slow thyroid uses Thyroxine, and that's less dangerous. I had a cousin who had that too and also used Thyroxine and got pregnant just fine. You have to take it on an empty stomach though... I hope others can inform you more. -
Anoniem Guest #17
Why even get pregnant with Graves' disease? You're passing all that misery on to the next generation—it's hereditary. Her hair falls out and just grows back; yours gets thinner though. I've been reading about it like crazy, but I think it's totally different. I find it irresponsible to get pregnant with this illness. If I had known I had Graves before getting pregnant, I wouldn't have started having kids. Now I have a daughter with the same condition. Go adopt or something. I was diagnosed with this illness 7 years ago, but looking back, it's been there since my teenage years. My daughter, when she was eleven, couldn't do what other kids her age could, even with medication.
The symptoms weaken but aren't gone; we had values of 56 and 64. -
Evita Guest #18
Hi.
I've been taking Strumazol twice a day for the past year. My doctor warned me that it's very dangerous to get pregnant now. But I'm wondering when it's safe to try? Right after I stop taking Strumazol? Or do I need to wait some time? I'm 34 and really want a baby... -
Gast 123 Guest #19
I'm reading your story with wide eyes! That's all so awful.. I was also prescribed Strumazol. However, in my case, it was clearly mentioned that there are risks associated with it (which is contradicted by another doctor).. So I really don't know if I should take this medication! I hear a lot about PTU here, what exactly is it? That wasn't mentioned at all. Is the mechanism different or something?
Maybe I should look into this myself quickly. I've just passed the first trimester. So I'm really worried about the consequences for the baby. -
NB #20
Hi everyone,
I'm 7 weeks pregnant and have been dealing with this for about two weeks now. My internist says I can safely use Strumazol during the second trimester because it's considered safe.
She explains that it's only risky in the first trimester since the baby is still developing, but in the second trimester, it's okay because the baby just needs to keep growing.
I can't really find much info on this.
On one hand, I want to trust my doctor, but on the other hand, I'm quite scared after all the stories I've heard and read about Strumazol.
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