# Ok if I increase my thyroid med?



## greatdanes (Sep 25, 2010)

Hello, just a little background, almost two yrs ago, a doc suggested i get a thyroid panel done b/c my thyroid looked a little ''puffy''. My tsh was .35 so she said i was midly hyper. I had an ultrasound and two nodules and two cysts were found it may have only been one nodule i can't remember. I started taking some supplements and essential oils on my thyroid, and three months later my levels were all normal , tsh was .45. I went on with my life, stopped rubbing essential oils etc. Well last week i was admitted to hospital due to being in a thyroid storm, and my tsh was undetectable, pulse was 123-130. The doc put me on methimazole and propanolol. He only put me on 5 mg of methi, but everything I've read states that 5-10 mg is the maintenance dose, and severe hyper(or thyroid storm) needs to be treated with at least 30mg. yesterday instead of taking one i took two.

I can't get in to see an endo until jan, and dont have an apt with family doc until 3 more weeks where they can draw labs. Should I just make an apt monday and request a higher dose? My bp/ pulse is withing normal limits but still high ''for me''!


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## lavender (Jul 13, 2010)

You poor thing! I can't believe any medical professional would actually suggest that you wait until Jan to see an endo! When I was admitted to the hospital for thyroid storm they would not let me leave without being cleared by an endo with an appointment the next morning. 
Did thy check your Free T4 and Free T3 in the hospital? Regardless of your TSH, these will tell you how truely hyper you are, and I believe that is what they dose Methimazole from. It may take a while for your TSH to come up, even if your T3/T4 are dropping. My heart was racing and I was having heart palpitations even on a high dose of methimazole and propranolol. Endo told me it would just take time to stabilize. I would not want to increase meds without a doctor's supervision. 
I would see your family doc on Monday, and insist on a referral to an endo who can see you sooner.


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## Andros (Aug 26, 2009)

greatdanes said:


> Hello, just a little background, almost two yrs ago, a doc suggested i get a thyroid panel done b/c my thyroid looked a little ''puffy''. My tsh was .35 so she said i was midly hyper. I had an ultrasound and two nodules and two cysts were found it may have only been one nodule i can't remember. I started taking some supplements and essential oils on my thyroid, and three months later my levels were all normal , tsh was .45. I went on with my life, stopped rubbing essential oils etc. Well last week i was admitted to hospital due to being in a thyroid storm, and my tsh was undetectable, pulse was 123-130. The doc put me on methimazole and propanolol. He only put me on 5 mg of methi, but everything I've read states that 5-10 mg is the maintenance dose, and severe hyper(or thyroid storm) needs to be treated with at least 30mg. yesterday instead of taking one i took two.
> 
> I can't get in to see an endo until jan, and dont have an apt with family doc until 3 more weeks where they can draw labs. Should I just make an apt monday and request a higher dose? My bp/ pulse is withing normal limits but still high ''for me''!


What doctor put you on the Methimazole? This is the one you need to talk to. We do not advocate self-medicating or titrating up or down w/o doctor's approval.

You should be having labs every 6 weeks at least as Methimazole is also hard on the liver and you need to have your antithyroid dosage adjusted according to labs. If this doc is not available in a timely fashion, I advise you to find another one who will be.

You already know this is life-threatening so you need a doctors' full attention. This is my humble opinion. I also had a thyroid storm.

Are you on a beta-blocker also?


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## greatdanes (Sep 25, 2010)

Well personally i think they did everything backwards. They put me on the 'cardiac floor'' after I was diagnosed in the ER. I thought to myself,''shouldnt i be on the ''endo'' floor, LOL. I know it effects the heart, but they gave me an echo, and another heart test and could see that I just had a high pulse due to the TS. I know I shouldnt self medicate but it's just bothersome knowing the the lowest dose probably isn't even come close to regulating the excess hormone amt. It's nice to hear that other people have BTDT. The ER i was in, none of the nurses had a case of it. One even was trying to explain hyper to my friend but instead of telling her hyper symptoms he told her hypo. No I never got the T3 and t4 numbers, but I'll find out hopefully this week, if the docs dont give me a hard time about having labs done less than 2 weeks later.


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## greatdanes (Sep 25, 2010)

ps, we are a military family, the hosp i was seen at was a civilian hospital. My on base clinic is the one that told me all of the endo's in my network were booked till jan. I will do somne calling myself though!


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## lavender (Jul 13, 2010)

wow! I'm speechless.
I don't think there really is an excuse for poor medical care, but this may explain some of the ignorance you experienced:
Thyroid storm is pretty rare. My PCP keeps telling me she has only seen 2 cases in 30 years of practice. Hypothyroidism is much more common. It did take several visits for my PCP to finally identify my symptoms as thyroid related, and I went into the ER with that info. Even still, they had to do all the cardiac tests to clear my heart. I think that hospital ERs are just not used to seeing this kind of thing very often.
I hope you can get into an endo soon. If you have to wait until Jan to see an Endo, I would make sure that your PCP starts running some tests now. TSH, FT3 and FT4 should be run often to see how you are responding to the meds you are on. I don't see why they should have any issue testing again this week. Thyroid storm can be fatal, and it is important that it be well managed. Titrating methimazole should be based on how your thyroid levels respond to the meds and supervised by a physician. 
You will also need antibody tests to see what has caused this. I am not the best when it comes to knowing all the lab tests. Andros is usually pretty good at letting people know what they need. I know TSI tests for Graves, but there are others you may need with the nodule. I would recommend RAIU (radioactive Iodine uptake) to further investigate what is going on with that thyroid. I am not sure if they gave you any test with any contrast dyes in the ER. I had to wait a month to get mine done because I had a CAT scan in the ER and the iodine dye messes with the RAIU. If you can go to the Endo with all the tests in hand, you may be able to get right down to treatment instead of having to wait months for a bunch of tests. 
I am concerned for you. My PCP was unwilling to prescribed methimazole at all. Even the hospital said that an Endo had to see me to prescribe any more than a minimal dose because they are just not qualified to treat this. I know the ER started me on minimal doses of both the methimazole and propranolol and within days the Endo like quadrupled everything. How are you feeling besides the racing heart? I had a list of symptoms a mile long, and it was obvious that I could not wait for treatment. I hope you are not feeling so bad.


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## Andros (Aug 26, 2009)

greatdanes said:


> ps, we are a military family, the hosp i was seen at was a civilian hospital. My on base clinic is the one that told me all of the endo's in my network were booked till jan. I will do somne calling myself though!


That is a very good idea and also try to get on "cancellation" lists! Let us know because you do need better follow-up than what you are receiving at the present time.


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## greatdanes (Sep 25, 2010)

Well, if you want something done right I guess you have to do it yourself, lol.

I called an endo that my friend uses that accepts tricare, and low and behold there was a cancellation for this thursday! I have an apt thuis thursday, yeah! Out of curiosity I asked the receptionist how long new patients have to wait and she said about 4-6 weeks. We are our best avocates, as I see the nurse that was trying to schedule didn't have my best interest in mind.

Anyway, i did have the graves antibody test almost two yrs ago, when i was midly hyper(no symptoms, except a little anxiety, but who doesnt get that now and again) and it came back negative. My great Grandmother had hyper(i guess this was in the 20's) and my granmother and uncle have hypo, and nobody in my family has graves. I'm almost certain that the nodule they found almost 2 yrs ago is toxic and the cause. We'll see. I'm sure the endo will do all the needed tests and we'll take it from there. On another note, I feel great, even though I'm on the lowest possible dose.


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## Lovlkn (Dec 20, 2009)

First you need liver function tests and a CBC as a baseline before beginning any anti thyroid meds. You might want to ask for a baseline eye exam to rule out any eye involvement as well.

Testing every 4 weeks is normal in the beginning although I tested every 4 weeks for almost 4 years, never being able to maintain stable labs.

You need to be sure the doc does the correct tests and a TPO and TSI antibodies are the minimum I would accept along with free T-4 and a Free T-3.

Dose adjustments should be done with the Free tests and NOT TSH which can remain suppressed due to antibodies.

Welcome to the board -


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## lavender (Jul 13, 2010)

I am glad you got an appointment. Sounds like the hospital really had no clue how critical this is. I am glad the endo's office was helpful.


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## usmc4myson (Sep 26, 2010)

I am glad to hear that you got an appt. As I was scrolling down reading your posts, I thought to myself..."does this poor gal live in Canada or some other country with socialized medicine?" Honestly, that is what it sounded like. Then I read that you are a military family. I guess I thought that the military health care system was better than that!

Do you think there is any possibility that you are also having an autoimmune allergic reaction to the iodine in the CT scan contrast dye?

What do they think caused the Thyroid Storm in the first place?

As a Mom of a Marine, know that I appreciate your family's service and sacrifice...

~Amy


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## Andros (Aug 26, 2009)

greatdanes said:


> Well, if you want something done right I guess you have to do it yourself, lol.
> 
> I called an endo that my friend uses that accepts tricare, and low and behold there was a cancellation for this thursday! I have an apt thuis thursday, yeah! Out of curiosity I asked the receptionist how long new patients have to wait and she said about 4-6 weeks. We are our best avocates, as I see the nurse that was trying to schedule didn't have my best interest in mind.
> 
> Anyway, i did have the graves antibody test almost two yrs ago, when i was midly hyper(no symptoms, except a little anxiety, but who doesnt get that now and again) and it came back negative. My great Grandmother had hyper(i guess this was in the 20's) and my granmother and uncle have hypo, and nobody in my family has graves. I'm almost certain that the nodule they found almost 2 yrs ago is toxic and the cause. We'll see. I'm sure the endo will do all the needed tests and we'll take it from there. On another note, I feel great, even though I'm on the lowest possible dose.


This is excellent news; I can't wait and I know you feel the same. Yes; we are our best advocates.


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## Debbie from Milwaukee (Apr 18, 2010)

So glad you were able to get an appt. this week! It IS important to stay vigilant, even though you are now seeing an endo. Some endocrinologists are mostly experts on diabetes, but hopefully this doc has experience with thyroid issues. Andros will probably give you a laundry list of antibody tests to ask for. I believe that people USUALLY manifest autoimmune disease in either the hyper or hypo state, but occasionally people can test positive for both hypo- and hyperthyroidism.

My daughter went through a Graves diagnosis and treatment 3 years ago, so I know it can be a long haul. Hope this new doc is responsive to you and orders the correct diagnostic tests and explains your treatment options for you. Just take things one step at a time. Write down all of your questions, take notes at the doc, and maybe even take someone with you if that works. I wish you the best!


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## greatdanes (Sep 25, 2010)

lavender said:


> I am glad you got an appointment. Sounds like the hospital really had no clue how critical this is. I am glad the endo's office was helpful.


Well in their defense, they did at least wait until my vitals were stable, then sent me on my way with a prescription, lol. It's not until I read this thread(reading that one person wasn't released till she saw an endo) that i realized that they really dropped the ball. It was a civie hosp btw, but military clinic that said I couldn't be seen until Jan.


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## greatdanes (Sep 25, 2010)

usmc4myson said:


> I am glad to hear that you got an appt. As I was scrolling down reading your posts, I thought to myself..."does this poor gal live in Canada or some other country with socialized medicine?" Honestly, that is what it sounded like. Then I read that you are a military family. I guess I thought that the military health care system was better than that!
> 
> Do you think there is any possibility that you are also having an autoimmune allergic reaction to the iodine in the CT scan contrast dye?
> 
> ...


Thank you! Btw, I didn't have the iodine scan, BUT I had been eating ALOT of seafood the past few months, and I also work in a stressful environment...those two things probably set it off. I'm using the lemon balm to rub on my thyroid. I used this last time(and eliminated some foods) and my labs were within normal range a couple months later. My BP and pulse have been on the low end,so today I took half my beta blocker pill. mY RESTING BP was 95/48. EEK.


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