Hyperthyroid/Thyroid storm

[mummy3]

I've been in hospital the last couple days with thyroid storm and am very worried about my baby and the effects. I have had a subclinical hyperthyroid for about 10 years now, as in the TSH is low but the other hormones (T3/4) are normal and it just needed monitoring, not dangerous.

About 2 weeks ago, I went to my primary doctor due to a stomach ulcer playing up and mentioned I felt shaky so the thyroid was tested again, she said it was higher but my endocrinologist said tp her just test again in September, after that could not get in contact or have messages returned. On Monday I was extremely dehydrated from hyperemesis and so went to urgent care, there I was very shaky and my heartrate was higher than normal, he tested my TSH and the next day it came back as not measureable it was so low. Tried again twice to get ahold of endocrinologist with no return call :/ He had me go back in on Wednesday to measure the T4 and 3, they were very raised (T4 upper limit is 11, I was at 23), my heartrate was averaging at 120bpm and my normal is relatively low at mid 50s/60. At this point I was told I had to get in with endocrinology immediately but still no answer, we then switched to a new one but the first appointment we could get is next Wednesday, which is actually pretty fast for first appt. I was told then that it couldn't wait till then and to go straight to the ER.

At the ER they started me on atenolol a beta blocker and waited for it to stabilize me, which it did, well the heart issues anyway The problem is its a cat D medication in pregnancy and so are all the other thyroid meds. Baby was ok on a scan they did there.

Has anyone gone through anything similar? What will they do when the atenolol stops working? If anyone has been on it or a thyroid med, how was baby affected? I'm only 9 weeks so still in the development stage and they will do something well before I'm out of first tri.

Sorry its so long!

 

[Kalabear]

So so sorry Hun! Sounds awful! I have hyperthyroidism that was diagnosed at 7 weeks in my last pregnancy. I was on PTU (class d) until 15 weeks then I did t need any medication. I was so worried but my baby was born perfectly healthy and still is!
I was retested at 6 weeks pp and levels were only a little out of wack. Then at the end of April and all of may I was feeling extremely horrible and my levels were crazy. I went on methimazole and then switched back to PTU as soon as I found out I was pregnant again.
I know it's scary but the medicine is what's best for you and baby. The risks are only very slightly increased....I mean a very very small increase with someone not taking these medications. Your baby will be perfect
Hope you feel better soon!!

 

[mummy3]

Kalabear, thankyou so much for replying! That is so reassuring, although I'm really sorry you have to deal with this too! How fast did the PTU work for you after taking it? The way the doctors in the ER were talking, it was made out to be this awful thing for the baby, hence the stop gap with betablocker! Last night and this morning I can feel my heart going faster and had no sleep again, plus the weight is just falling off (which would be helpful if it was after the baby not before ) so freaking out again! What are your symptoms when your thyroid goes crazy? Sorry for the million questions!

Big congrats on your baby and your new pregnancy, babies close together are a lot of fun

 

[Kalabear]

that sounds so stressful! I think the risk in a thyroid storm is much more so for the mother than the baby from what I've read. Listen to your ob...my dr has been very reassuring as I get nervous on PTU as well. He has said that he has treated multiple women on PTU and they all have healthy babies and healthy pregnancies. I believe if hyperthyroidism goes untreated in the mother there is a slight increased risk the baby is born with hyperthyroidism....but again...that can be controlled with medication....so at least it's not something more serious. I know it's much easier said than done but trust the medication will take care of you and baby and you are doing what's right for baby. It can be scary hearing about the medication but I have read a lot about them and the risk is only slightly slightly more for issues.

It took a good 3 weeks to a month for methimazole to start working when I had terrible symptoms. In my first pregnancy I wasn't symptomatic so I'm not sure how long it took the PTU to start working. But I believe the beta blockers work much quicker so hopefully only a couple days before your feeling back like yourself!!

I don't believe I was having a thyroid storm but I was very symptomatic in May. I knew something was wrong. I was very irritable, couldn't sleep even though I was exhausted, racing heart, diarrhea four or more times a day, losing weight, acne, and just a general uneasiness like my skin was crawling. Feeling great now minus the ms but I don't mind

Just out of curiosity..how is your ms? I've always felt hyperthyroidism is what cause mine to be so severe.

And thank you for the encouragement about two close in age!! we are so excited!!

 

[mummy3]

I'm going to take it, cant carry on with these symptoms at all! Its good to know that there's been a lot of women on them with no complications

3 weeks sounds along time with the symptoms going stong :/ The betablockers do help a lot but have to keep upping the dose!

Your symptoms do sound similar, I believe I was classed as storm because it happened very fast and has gone very high. Do you know what your hormone levels were like?

Yeah I get hyperemesis each time. This time is even a lot worse than the others. Managed to get by so far with Zofran and Phenergan and only 3 IVs, not fun though! Is yours really bad too?

Close ion age is so much fun! I'm going to have 4 age 5 and under Its busy and hectic but so much fun

 

[Kalabear]

That's amazing Hun! 4 under five! I would love that one day!

So there must be a correlation between hg and hyperthyroidism.....I read that before. Ugh I can't wait to get medicine for mine. It was awful my first pregnancy but I was living in China and they wouldn't treat it so glad to be back stateside!

Glad your drs are taking good care of you! Once you get into the second trimester maybe your thyroid will calm down....mine got so much better I didn't need any medication until I was pp. I'm so glad you got medical help straight away! That's key! I can't remember my levels but I know they were pretty bad. I was nervous because they ordered all of these tests and hardcore medicine but I wanted to continue to breastfeed so I went about things quite slowly. My dr is confused by my results though as my antibodies are quite confusing...not sure what that means are you still in the hospital or are you back home?

 

[mummy3]

The more the merrier I do have a 6 and 9 year old too Totally recommend a big family

There is a link from what I understand, the higher the hcg usually the more sickness, so its higher often in multiples and molar pregnancies and hyperthyroidism is also linked to higher hcg. My other pregnancies the tsh did get lower but not the T4/3 so this is a new one. Oh man HG with no meds is brutal Did you get anything yet? My OB is great and just calls it in right away as soon as I find out Zofran can take the edge off and Phenergan usually knocks a person out lol but obv with the thyroid we'll need huge doses I wonder what it is with your antibodies, its good to know a cause! I want to bf too so hopefully its going to be straightforward to.

I'm at home just now taking it easy, back to endocrinology tomorrow

 

[Kalabear]

I have an appt next week to check my thyroid so I think I will ask then if I can make it. It was rough last pregnancy...I was at the hospital begging (sobbing) for relief and they gave me some herbal tea which they told me wouldn't work...they were right haha.
Do you know if Graves is causing your hyperthyroidism? I refused the iodine uptake scan which tests to see if it is Graves because I wanted to continue breastfeeding and then get pregnant soon. Anyway that's why my dr just treats me based on blood tests.
Oh my goodness what a lovely family!! so jealous!! I love big families! how do you do it with being so sick?? You are superwoman! I feel awful....so lazy

 

[mummy3]

Herbal tea for hyperemesis? Oh man that's awful!! I hope they can give you more effective medication!

The endocrinologist did talk about Graves, I had more bloods taken today for free T4 and antibodies so we'll see. Started the PTU too. I'm sure we'll both find out eventually whats setting it off! Do you have a goiter with yours? I don't have one

Its not lazy being sick! I have help with my lot but with the sickness the best thing you can do is be gentle with yourself and remember it'll pass and will totally be worth it

 

[Andypanda6570]

I was on.atenolol when I got pregnant my doc switched me right away to Labatelol ( SP) which is a c medication,,.atenolol is class d and my doctor didn't want me on it. I was also on synthroid which does no harm to the baby it's a class a med.. good luck

 

[Kalabear]

Glad your on the PTU! What's your dose? I can't remember ATM but I think it's either 50 mg twice a day or 100 mg twice a day.

No goiter for me either and I haven't been having any eye issues either. Just all those lovely symptoms haha. So glad my meds have been working though! My dr has said that you can still have graves without the goiter and eye issues. He is teetering between hashimotos and graves for me though. I guess hashis starts out hyper then burns the thyroid out and you turn hypo.

How are you feeling? Are your symptoms getting any better?

 

[mummy3]

Thanks guys
I'm going to call tomorrow and switch the atenolol to the labatelol, need the beta blocker but safer is better!

The PTU dose is 50mg twice a day for now, bloods every 2-3 weeks and go from there

Whats hashimotos? He didn't mention that to me, just graves mainly should know tomorrow about the antibodies! When is your appointment next week? I hope it goes smoothly How have your symptoms and sickness been these last few days?

My shakiness seems to be easing slowly, still get palpitations and short of breath but its slightly less often

 

[Kalabear]

I'm going to get my blood drawn now and then results Thursday....I'm so happy because i also get ms meds ms is rough....started throwing up....dreading the next ten weeks. My symptoms have been great since the pregnancy. I still get the racing heart from time to time but the tremors, bm, grouchiness, and sleeping are great

I don't know much about beta blockers but glad they have safe options during pregnancy.... But cat c will be much better than d!

How are you feeling? Is the ms letting up for you?

Hashimotos is another autoimmune deficiency like Graves. I guess I'm not completely sure of the specific differences but it was explained to me that hashis starts out hyper and your thyroid burns out and you become hypo. But I've read some things about the antibodies pointing to both hashis and graves. My dr said I'm an interesting case and he's not giving me a complete diagnosis until I have the uptake scan and just has to treat me month to month based on blood results.
Have they mentioned anything to you about the uptake scan? I was breastfeeding when they scheduled it for me twice...both times I turned it down because you have to completely give up breadtfeeding not just pump and dump. Luckily my dr was supportive of me. The uptake scan should give you a definitive yes or no to graves.

Do you have other autoimmune diseases? I have rheumatoid arthritis and excema. I have been tested for lupus but it was negative.

 

[mummy3]

Yay for MS meds!!! Man you did so well lasting this long without them!!! Good luck for thursday I still haven't had the call with my results but they had me pestering them this morning so it'll be soon lol. It sounds positive that your symptoms are settling

MS is still about the same

That sounds complicating, can you have both at the same time? He's not mentioned the uptake, just a more, we'll have to get this sorted after the baby I'll be bfing awhile so he'll have to wait lol.

Autoimmune diseases seem to trigger others, do you get flares with the others when 1 is playing up? I don't have any autoimmune diseases. Well kind of. I have Isaacs syndrome which is usually caused by an autoimmune condition, just we haven't found one yet! So maybe its graves!

Hope your day is going well

 

[mummy3]

The endocrinologist called about 4 45, last minute! Said all antibody tests negative so doesn't look like graves, he wants to monitor it and do tests after the baby. He's also wanting me to stay on the atenolol

 

[Kalabear]

Really?! that's crazy! I wonder if you have the thyroid problem caused by pregnancy? How interesting! I hope they continue to test you following the pregnancy!
I bet the drs are stumped!

I got a call with my initial blood results and my t3 and t4 are finally in normal range. they will tell me the antibodies test tomorrow.....just have to make it 24 hours for ms meds!!

 

[mummy3]

There's definitely something funky going on! He said something along the lines of I've had a mild version that's gone not mild lol. I have had subclinical for years which is weird and 5kids with nothing like this Yeah he's seeing me every few weeks, I go again the 10th september The tests from a week ago, everything,T4/T3 and a free T4 were all at least twice the upper end of normal He did say its interesting

Oh yay!!!! In range is brilliant!! Hopefully that means the MS meds will help a huge amount!! I wonder how your antibodies will go, seems like we both have weird thyroids I hope the next few hours are gentle on you, its so hard feeling sick and then very weak Esp when the little ones need a lot of attention!

Do you go to perinatology during your pregnancies? I'm wondering if they'll do anything on top of the endocrinologist.

 

[Kalabear]

thanks Hun! I'm counting down the hours haha...lucky to have such a helpful DH

I can't imagine how you do it with all you LOs! But I'm so jealousyour house must be so full of love!
Are your older babies helping you out?

I actually only see my family dr for all of my thyroid and he's also my ob. He does it all haha. I like the more intimate relationship. He knows what I like and do t like and that breastfeeding has been important to me since DS has been born...so he's tried to make sure treatment is convenient for me. He's my sons pediatrician as well....it's just nice he knows our family dynamic. When I was living in China where I was first diagnosed I was seeing an endocrinologist.
What is a perintology? I haven't seen one though. Does your endocrinologist work together with your ob? I've always wondered how that worked.

 

[mummy3]

A helpful DH is a lifesaver I'm lucky there too

Right now 4 of the 5 are at school I have help too so its not so bad, a lot of fun! You're going to love it, having them all around, there's so much energy

My eldest is helpful in a pre teen way, same with the 5 year old, both girls are very maternal. My older son and 3 year old have autism and require a lot of help, thankfully they qualify for a lot of therapy and home services The baby is a trouble maker

Wow that's really cool! The idea of the same doctor for all is a really good one, they'll know all the history so that's very reassuring Will he refer you to specialists too if needed? I'm pretty new to the American system. SO far we have a PPO and I didn't realize the different health systems don't speak to each other, so a million different doctors in several different places So your system seems a lot better! Its very important to have your doctor on side too, my OB is supporting my VBAC even though I've had 2 c sections.

What's China like? Always wanted to go there

Perinatology is a specialty for high risk pregnancies, they do consults and decide the overall care plan as well as more indepth ultrasounds. The endocrinology is in the same network as perinatology and perinatology work with my OB but the endocrinologist doesn't work with the OB

Did you get your results back yet?!

 

[Monzter79]

Hi! Sending you all my best. I relate. I was diagnosed with Graves Disease about 10 years ago. I was misdiagnosed (as "crazy") until I landed in the hospital with thyroid storm. I didn't have insurance at the time and I couldn't afford a specialist. the methimazole made me VERY sick. I had a flu pretty much constantly. I quit the meds and I went without treatment, only to later be told my thyroid was testing normal and that I must be in remission.

I started having over 20,000 PVC's a day and my LVF was down to 30%- but, because my tsh tested normal, it was assumed that my thyroid was fine. They were planning to do an ablation procedure which may've left me relying on a pacemaker. I couldn't have afforded it by any stretch and even though they told me it wasn't possible, the PVC's just stopped one day.

I haven't been feeling myself for quite awhile, difficulty with weight, exhaustion, moodiness, muscle weakness off and on. I went to my doctor (I do have very good insurance now!), and demanded they test me, but they refused to test my t3 and t4 because my tsh was normal- though the ultrasound they took showed hypervascularity indicative of graves. I was really upset but started taking an antidepressant and going to therapy anyway, since that's what my doctor suggested.

I recently switched from my old obgyn to a midwife who works in a clinical setting. She tested my tsh (normal), t3 (elevated), t4 (normal) my antibodies indicate Graves and FINALLY- I've been referred to an endo.

I'm angry. I've been telling my docs that I don't feel well and I haven't gotten the help. This disease has long term consequences for my health. Thyroid disease has a huge impact on your quality of life- as you all know. While I'm grateful to finally have help- I'm angry that I wasn't heard AND that I didn't fight harder for answers.

I don't have a lot to add other than my encouragement and moral support for all of you. My only advice is that NOBODY is more of an expert on you, than YOU. If somebody can't/won't answer your questions, your phone calls, Or poo-poos you and tries to excuse your symptoms as "psychological"- keep knocking down doors and demanding to be heard! Enlist and accept the support of loved ones. Sometimes it's really hard to keep going when you feel awful. These diseases and disorders aren't widely understood, and we need understanding and support.

I see the endo tomorrow, I'm scared and very distrustful at this point. Fingers xd.