[cathycnm]

#1068799

Andi – Welcome! As a nurse practitioner, I am a huge fan of NPs for most things. However, I am wondering if you are seeing an endo, also. Or is your nurse using an endo as a consultant?

As far as panic attacks, there are several meds that can help control these until we are stable. I am weaning off antidepressants that I went on 2 years ago when all this started. I am down to 1/4 dose but a little afraid I will go loco again if I go off totally (though my docs think the dose I am on is nothing but placebo ” title=”Smile” /> It has helped my quality of life at a time when I really needed it – I still had some of my worst depression moments the last two years. I wonder how it would have been without meds.

If your NP is not in practice with an endo – it may be wise to ask for a consult or outside opinion.

[ANDI]

#1019045

I was diagnosed with Graves Disease almost 2 years ago. I have been on Tapazole until 2 weeks ago. My new endo pulled me off my Tapazole because my recent blood work showed I was getting too much medication. I don’t know about anyone out there but my head is just spinning with all of this. I haven’t had RAI. I have gained so much weight since I have been on the Tapazole. I gained about 80 pounds in a year and a half. I get panic/anxiety attacks just going to simple places like the grocery store. I have a little boy who is 2 1/2 years old and my husband and I just bought a motorhome to go on family getaways and I am so afraid to go in case of getting a panic/anxiety attack. I never see my doctor I always see a nurse practitioner. Is this a normal thing? As I said before, my head is spinning. I am so worried about getting thyroid storm because I am off my meds. I am trying to get some of this weight off and nothing seems to help. It is so frustrating. Like I said, I am new to GDF and new to posting anything. This endo (well nurse practitioner) is my second one, my first one really pushed me about killing my thyroid and it was like if I didn’t go forth in killing my thyroid he wasn’t too interested in treating me. I didn’t feel like very important as a patient of his, I felt like a number and my appts were basically " yeah, your thyroid numbers are fine I will see you in three months" it was like he wasn’t interested in how I felt. That is why I am on my second endo. If anyone has any information or insight I would greatly appreciate it. ” title=”Very Happy” />

[ANDI]

#1068800

Thank you for your response and information. My nurse practitioner is using the endo as a consultant. On the topic of the anxiety attacks, I am on Toporol (beta-blocker) still, my CRNP said it would help with my "jitters" but I still get them. Are having panic/anxiety attacks normal for people with Graves Disease? I did consider talking to my family doctor about going meds for them but I feel like such a failure not being able to deal with them on my own. I am not a person who likes to go to doctors or take meds unless I am really really ill. I won’t even take a tylenol for a headache unless it is really really bad. I guess I have always been a believer of mind over matter. But when it comes to the attacks I just can’t seem to conquer them with mind over matter. The last camping trip I forced myself to go on, I was ok as long as I did alot of self talking and kept busy bu by the time night fell I just got this feeling of oh my god I have to go home, I want to go home and then I was pretty much in a panic attack. Another reason why I have been hestitating about meds is I don’t want to feel "out of it" or like a zombie. I just want my life back……. I want to go on trips with my family and not get an attack… I want to enjoy my life again and not worry about oh my god what if I get an attack or what if this and what if that……AAAAAAGGGGGGHHHHHH I am so frustrated right now (as if you couldn’t tell ” title=”Smile” /> )

[npatterson]

#1068801

Dear ANDI,

Another Nurse Practitioner here! Can you not make an appointment with the Endo? Maybe the NP can help you get in sooner. It will help if you write down the "facts" before you see the doctor. Pulse rate, how long they last, how they come out of the blue….

You are NOT a failure, and it is not a matter of mind over matter. Think of it as a broken leg–you can’t "think" it better. Any mind/body work you are doing, keep it up. They will benefit you more later.

You can’t just be off medication. It sounds like perhaps "too much medication" meant you were too hypo. In that case it is normal to stop the medicine for a while, but with (lab work). Were you like this before you stopped the medication?

The point of taking medication for panic attacks is not be zone you out, but find a point of balance in which you function well, and are not side-swiped with panic attacks. It may even take more than one type of medicine (maybe beta-blockers and anti-anxiety meds). DON’T sit at home worrying yourself to pieces. Make an appointment with your Endo, and/or your Family Doctor, a counselor or a Psychiatrist that practices behavioral medicine (meaning not psychoanalysis). You are not crazy, not weak, but do have Graves’ tossing you around. You can’t do it all yourself.

If you will e-mail the office, we have material on treatments, and lots of things that you might want. If you e-mail me at "nancyngdf@bellsouth.net", I can attach some of it to you.

Take good care,

[ANDI]

#1068802

Nancy, thank you for the great info…. My endo is based in Pittsburgh, Pa. which is 2 hours from where I live but she has an office in my hometown. That’s where I see the CRNP.. I am happy with my new CRNP and yes I was getting too much medication that is why she pulled me off the Tapazole but kept me on the Toporol.. I did get panic/anxiety attacks before I was diagonsed with Graves Disease but then my family doctor said they weren’t panic attacks they were caused by a thyroid rush… So needless to say I am really confused as to whether they are truly panic attacks or just thyroid rushes… Thanks again for the info and I will email you at the address provided for more materials.. I am so glad that I joined GDF it is nice to know that there are people like me out there going through this crazy condition…. ” title=”Smile” />

[RhondaG4]

#1068803

ANDI,
Welcome…and your not alone. I suffer from anxiety/panic attacks also. I’ve been on a beta blocker for a while, and I am on 2 anti anxiety meds. Until a few things settle I’ll be on them for a while. I am blessed in the fact that I have a really good phychiatrist..sorry my spelling is horriable…on board my team of docs, and he is familar with Graves. If you decide to call around to get an appointment with one, ask the receptionist if the Dr. has any experience with Graves patients.

For me, it really was a matter of wanting to be able to funtion somewhat normally for my kids and husband. There is no shame in asking for help with a medication, and even if it is "just a surge from your thyroid" it is still very real to you and from what I have learned very common in Graves.

I’m not zoned out, and even with these meds on board, my heart rate still runs about 105 resting. Don’t let me scare you tho….I have other health problems and have to take a steroid that makes my heart rate run higher and almost induces anxiety also.

Anyway, I hope this helps, and I hope things settle for you soon. Take Care, Rhonda

[runlacie]

#1068804

Hi Andi! I’m also near Pittsburgh. I’m north- up close to New Castle. Thyroid problems seem to be pretty popular in our neck of the woods. I can totally relate to the panic and anxiety part of this. I have had anxiety for YEARS, and there was a time about 3 or 4 years ago when I would get full blown panic attacks. I have often wondered if all of that could somehow be related to thyroid- so I am intrigued by what your doctor told you. Does your endo think there could also be a relation? I had rai 4 weeks ago and hope maybe in the future I will notice a difference. You’ve found a great place here on these boards and I’m happy you found us. Take care!

[ANDI]

#1068805

Wow!!!!! I am just so happy with all the support and info I am getting from this group… My endo seems to think that if the attacks persist then we will discuss an anti-anxiety med. Right now she is just watching me since I am recently off the tapazol. I read your last response and you stated that you had RAI 4 weeks ago.. What was that like? I am sure if this doesn’t correct itself I will have to take that step next… My old endo tried to push me into that step and I wasn’t comfortable with the idea. My old endo said on one day I would have to go to the hospital and take a pill then return 4 hours later for a scan, then the next day take another pill (which I found out was actually an injection or IV in my arm which I am not crazy about at all) then go back for another scan then two days after that go take another pill to kill the thyroid. Now he also told me that that final day of taking the pill (the one that kills the thyroid) is when I needed to stay away from my 2 year old son for the day. Needless to say when I found out that I really had to stay away for everytime I took a pill or got the injection/IV it turned into being away from my son for 5 days.. So I cancelled the test.. Was your test like the one I described above? I have talked to alot of different people here in my hometown, Erie, Pa, and alot of them just had to take one pill and that was it. If I do end up having to do the RAI, I am strongly considering going to either Pittsgburgh Hospital or Cleveland Clinic. But right now I am trying to deal with going on vacation with my husband and little boy in our RV. He wants to get away for the weekend before summer runs out and I just keep thinking OMG what if I get a panic attack, I will be stuck/trapped wherever we are at. I am so afraid to do things because I immediately think OMG what if I get a panic attack. AAAAAAAAAAGGGGGGGGGGGHHHHHHHHHHH I am so frustrated right now about always thinking what if this; what if that………………………..I want it to stop so I can enjoy my life and family………… AS you can tell it has been a real frustrating day for me on the panic attack side.. On the graves side I have been doing great I just hope my labs I do in September show it has gone into remission…… Thanks again for listening to me vent… Take care everyone… Andi

[runlacie]

#1068806

Hi Andi!

I hope you take the vacation and have a good time! Summer has gone so fast, hard to believe it is already school time again- we start Aug 31, and I have to work every single day (except Sunday) until then. Try not to think about panic attacks (I know, easier said than done) but diverting yourself might help? Also, at least you will be near your husband should you have one. WHen I had panic and anxiety it always made me feel so much better knowing I’d have family around. Where are you thinking of going on your trip?

I am near New Castle. My cousin lives in Erie, going to LECOM. Wish she was done so she could be my doctor, lol. My family doctor works out of an office near Boardman, Ohio and when all of this happened he got me in very quickly with the endo who works out of that same office. Ironically, I do have an endo at the Cleveland Clinic who I do yearly follow-ups with due to an adrenal tumor which was discovered by accident (I had a CT for something else and there it was). It’s benign. Anyways, I didn’t really want to make the drive to Cleveland and kind of thought it would be an easy fix so it wouldn’t be necessary. I now wish I would have at least tried to make an appt in Cleveland, as I am frustrated and might have different results had I chosen that route. My gyne is a UPMC doc near Pittsburgh, and I have also been in UPMC hospitals. I just was going to the BOardman doctor because my husband was working over there and he found the doctor and really liked him, so I switched. UPMC and CC would both be good choices, I think. Is there no place in Erie you could go? Those are long drives from up there. But my Mom always says, well- we go far away for shopping at different malls, so why WOULDN’T we go far away to find a good doctor?

My rai was now one month ago. I have felt pretty good with some slight bumps over the past month. However, today I am feeling very hyper. My dosage was small and I am very afraid that it wasn’t enough to kill my thyroid. One of the things that they sometimes do before you have RAI is to do an uptake and scan. You go in, take a pill, go back a few hours later (mine was 6 hours later) have a scan, then go back 24 hours after the pill was taken for another scan. The pill contains a very small amount of radioactive iodine and they can see on the scan how much your thyroid has sucked up. The scan doesn’t hurt it’s just like a little machine taking pics of your neck. I have never heard of having an IV for this, but maybe I’m wrong there- I know I didn’t have one. It was a whole month after my uptake/scan that I had RAI.

Oh, and I really didn’t have to stay away from everyone. DH was kicked out of the bedroom for 48 hours (lol, and he flew outta there thinking I was gonna glow or something haha) and the radiologist said to keep an arms length from people during the first 2 days. Like it was okay to be in the same room, but wouldn’t want to go a long way in a car with small children or pregnant women. My son is 7 and they were not concerned at all about him. You might have a bit of difference with your son being only 2. And also, like I mentioned I got a really small (too small???) dosage.

Well, I hope you get it into remission and you don’t even have to worry about RAI! Have a fun vacation and let us know how it goes, okay?

Take care!

[npatterson]

#1068807

ANDI,

The only radioisotope that you have to be away from anyone is the I-131. The others are contrast mediums, meaning they help the x rays to be clear.

It would mean that the baby sleeps in his/her own bed that night (or maybe you sleep in the guest room. At story time, Daddy holds the child in his lap, and you read the bedtime story from the chair. We really don’t get high doses of RAI, compared to say, Thyroid Cancer patients.

Take care,

[Rfayley]

#1068808

Hi Nancy –

I have a question about the radioisotopes please. When I had my thyroid uptake scan, the paperwork I received stated that I was given I-131 and not I-123. Should I have been instructed to keep my distance with that? When I asked my primary care doctor the other day, he said it didn’t matter which one I received because it was such a small dose given for the uptake. Does that sound correct?

Thank you,
Gayle

[runlacie]

#1068809

Yes, Gayle, I think that is correct. Doesn’t matter which, it’s based on the size of the dose. Not sure why they usually (?) give 123 for scan and 131 for ablation. I bet someone here knows or else you could search it.

[Author]

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