[mom2pups]

#1017905

Hi everyone, I have been reading archives for a couple days now. I seem to be very fortunate in that my Graves Disease seems to have just come on April 14-not yet even 2 months. Most of u have had it years.
I seem to have gone though from 0-60mph overnite.
April 14-headache
April 19-at docs appt I told him abt sinus pressure, and that the muscle pain I was having was not my typical fibromyalgia (he did a Lymes test-negative). Treated for sinus infection with Z-pack.
April 23-glands on left side swollen and painful
April 25-glands back to normal
the next week the muscle pain got progressively worse. I was sleeping at most 2 hours (small increments)/night. I was itching like crazy (never mentioned to doc-I thought I was allergic to detergent).
April 29-all over body pain was severe. Excruciating pain getting into car, stepping over a curb, and unable to open door leading to docs office- my thighs kept giving out also.Tremors in hands and head bobbing (think Katherine Hepburn) were quite bad. Nurse Practitioner did some labs (but no thyroid tests) and had me take Benadryl to help sleep.
May 1–pain suddenly gone –even fibro pain I have had for many years totally disappeared and has never come back…yet…the endo said it may return. But feeling very blessed so far.

That week I saw a neuro who thought I may have MS (I had a weird gait and brain fog) MRI of brain-negative. Labs showed TSH barely detectable and free T4 -2 1/2 times normal-so – hyperthyroid.

I saw the endo (he said the weird gait is due to severe muscle weakness)and after RAI uptake and scan , he called this past Wednesday and told me I have GD. I thought it would be a thyroiditis since I had the bacterial infect/virus days before the symptoms.
He went thru 3 options, and for now I decided on the Tapazole. I started it Thurs eve and have had 6 doses-so far so good as far as no side effects.
The endo said I can still decide on RAI later if I want. I am lucky he is also Board Cert in Nuclear Medicine. I am definitely thinking abt it.

So as u can see, my symptoms came on quickly and with a vengeance. I have 2 epileptic dogs and was unable to medicate them after seizures-no way could I put a syringe in the butt or under the tongue. I couldn’t open any doors in the house (even the fridge-not all together a bad thing), getting up from chairs (even the commode) was nearly impossible.

The muscle weakness is still bad, but at least now I can climb stairs with effort. I was put on Propranolol for tremors, palpitations and sweating. I am still quite short of breath with exertion. I competed in a 5k 7 months ago and now look at walking to the bathroom as a marathon.

My questions-
I was diagnosed years ago with Essential Tremors (like Katherine Hepburn and Sandra Day O’connor). My head would slightly bob occasionally and my handwriting changed a bit. I am wondering if the head bobbing I was having is ET or do u have tremors other places besides the hands with GD? I am on the Inderal 4 times/day becuz when I would hit 6 hours the tremors and heart palps would come back. So it’s doing a great job…as long as my asthma stays in check.

Were u able to be near ur pets after RAI? They sleep on my bed and with seizures I need to get near them to medicate.

This was all quite a shock becuz I already have 2 autoimmune diseases-diabetes and an AI inner ear disease, along with a fairly rare disease where I am missing an enzyme.

From reading here it sounds like it could be awhile before the Tapazole kicks in to help the symptoms I have already mentioned, as well as the frequent bowel movements, heat intolerance and fatigue. It’s funny, and yet not–yesterday a friend was taking me to the pharmacy. She drives a Jeep. No matter how hard I tried-I could not get my leg up into the Jeep. She had to come around and lift my leg for me…needless to say, she went into the pharmacy so I wouldn’t have to have her lift my leg again. LOL.

My endo never mentioned not to exercise (maybe becuz he said my deltoids and thighs have severe weakness he figures I wouldn’t anyway–he is right). Do people use Physical Therapy to get strength back-if so, how long do u usually have to wait to start it?

I always figured being hyperthyroid meant u were skinny, could eat anything and had lots of energy…boy was I wrong!!
Thanks ahead of time for any replies!!!!

Cindy

[Kimberly]

#1061573

Hello – and welcome to the boards! Wow, you have certainly had a lot to deal with lately. As you said, though, it’s good that you received a diagnosis pretty rapidly after the onset of your symptoms. Many patients struggle for years with symptoms, only to be told that they are stressed, depressed, have a heart issue, are hypochondricacs, etc., etc., etc.. Now that you can put a name to what is going on, you can start on the path to healing.

Unfortunately, once we get one autoimmune condition, we are statistically more likely than the rest of the general population to end up with one or more additional issues. There are several members here who, like yourself, seem to have ended up with a “cluster” of autoimmune conditions.

The latest guidelines from the American Thyroid Association on radiation safety state that pets will usually not receive enough radiation to cause harm. However, the guidelines specifically say not to sleep with pets. (The guidelines say to ask your doctor about the time period that you should refrain from this).

Anti-thyroid drugs do start working immediately to block the production of *new* thyroid hormone. But because it takes some time for the body to rid itself of its stores of *existing* thyroid hormone, it can take a few weeks before you really start to see some relief from your symptoms. The Inderal is a beta-blocker and can give you some temporary relief from the rapid heart rate until your thyroid hormone levels start to come down.

I haven’t heard of tremors – other than hand tremors – being associated with Graves’ . I’ve had times when I felt “shaky” in my quads or other parts of my body, which I figured was due to muscle weakness. This is definitely something that is worth checking out with your doctor.

I would also double-check with your doctor on the exercise issue. The biggest concern is that we not exercise while our levels are still hypER, as this can put extra stress on the heart.

Take care — and keep us posted!

[mamabear]

#1061574

I am sorry to hear about this. My graves was also triggered by a virus.

This might seem odd but I’d like to talk about your dogs. You say they have seizures and that you have meds for them. My concern is, have you found the root cause to their seizures?
Are they the same litter? If not it is odd they both have seizures.
Have the dr. given you a clear diagnosis for BOTH dogs as to why this is happening?
Is the medicine they are on proper for their types of seizures?

I ask because a dog on an anti seizure medicine should not be having issues of seizures. Anti meds help prevent them so I am unclear as to why they might still be having them.

Sorry, I’m an old vet tech..cant help wanting to know. ” title=”Very Happy” />

[Bobbi]

#1061575

Just a note: Kimberly, when I was immensely hyper, I also had some (minor) head tremors along with the hand tremors. It was pre-diagnosis for Graves, and I was sent to a neurologist who diagnosed the same thing — essential tremors. They both went away with the successful treatment of the hyperthyroidism. That said, I know it is completely possible for someone to have essential tremors AND hyperthyroidism. But in cases like mine, the cause was Graves.

[mom2pups]

#1061576

Kimberly wrote:Hello – and welcome to the boards! Wow, you have certainly had a lot to deal with lately. As you said, though, it’s good that you received a diagnosis pretty rapidly after the onset of your symptoms. Many patients struggle for years with symptoms, only to be told that they are stressed, depressed, have a heart issue, are hypochondricacs, etc., etc., etc.. Now that you can put a name to what is going on, you can start on the path to healing.

Unfortunately, once we get one autoimmune condition, we are statistically more likely than the rest of the general population to end up with one or more additional issues. There are several members here who, like yourself, seem to have ended up with a “cluster” of autoimmune conditions.

The latest guidelines from the American Thyroid Association on radiation safety state that pets will usually not receive enough radiation to cause harm. However, the guidelines specifically say not to sleep with pets. (The guidelines say to ask your doctor about the time period that you should refrain from this).

Anti-thyroid drugs do start working immediately to block the production of *new* thyroid hormone. But because it takes some time for the body to rid itself of its stores of *existing* thyroid hormone, it can take a few weeks before you really start to see some relief from your symptoms. The Inderal is a beta-blocker and can give you some temporary relief from the rapid heart rate until your thyroid hormone levels start to come down.

I haven’t heard of tremors – other than hand tremors – being associated with Graves’ . I’ve had times when I felt “shaky” in my quads or other parts of my body, which I figured was due to muscle weakness. This is definitely something that is worth checking out with your doctor.

I would also double-check with your doctor on the exercise issue. The biggest concern is that we not exercise while our levels are still hypER, as this can put extra stress on the heart.

Take care — and keep us posted!

Thanks so much Kimberly. It’s so sad so many have been misdiagnosed. I was lucky (well not so much with the intensity of all symptoms slamming me at the same time) that I was diagnosed in 7 weeks. Part of that was just taken up with the neuro and tests and finally getting the lab results. I was also lucky that I got into an endo so quickly. The 2 endo’s within an hour of me were not seeing patients until September. I asked for other referrals from them and eventually got to a Cleveland Clinic Satellite office.
This is the first place that had me actually speak with a nurse. All others I told I was very hyperT and it didn’t matter. I had been set up for the end of July at this CC office, but they wanted me to speak with a nurse. As I picked my jaw up off the floor she got on the line and asked if I knew my numbers…I had the lab results in front of me, and after hearing them she said I needed to get my doc to fax records in that day if possible, and she would be on the lookout for them so she could quickly show the endo.
It took my GP a few days , but then that Friday the CC nurse called me and said the endo I was going to see in July was at that moment on the phone with another endo. He was looking for someone who could see me soon since this was "urgent". That new office (also a Cleveland Clinic satellite office) called me Saturday and I was in on Tuesday.
It’s amazing that I have had tests and already the GD diagnosis and it’s 6 weeks before I was supposed to even be seen.

Please anyone, if u are having to wait for ur original appt to even get a diagnosis-ask to speak with a nurse and be sure to have lab results in front of u.

Thanks for the info ant pets sleeping with u after RAI. I will talk to he endo abt it, but it looks like RAI may not be an option. We’ll see-I’ll keep u informed.

I will speak to the endo abt exercise.

Thanks!

[mom2pups]

#1061577

mamabear wrote:I am sorry to hear about this. My graves was also triggered by a virus.

This might seem odd but I’d like to talk about your dogs. You say they have seizures and that you have meds for them. My concern is, have you found the root cause to their seizures?
Are they the same litter? If not it is odd they both have seizures.
Have the dr. given you a clear diagnosis for BOTH dogs as to why this is happening?
Is the medicine they are on proper for their types of seizures?

I ask because a dog on an anti seizure medicine should not be having issues of seizures. Anti meds help prevent them so I am unclear as to why they might still be having them.

Sorry, I’m an old vet tech..cant help wanting to know. ” title=”Very Happy” />

Hi,

I have to say I will be a bit worried when I get another virus since it caused all this! Were u worried?

My puppers are mini schnauzers and both have Idiopathic epilepsy -so no known specific reason was found after loads of testing. We do think my 10 yo’s epilepsy may have been brought on by something that happened during the birthing process, but no one is sure (my friends have his littermate sister and she has a head/body tilt-but it doesn’t bother her),
He started having seizures at age 5 months.
He is on Phenobarbital and Keppra ( he couldn’t handle Bromide).

My 8 yo little guy started having seizures at age 3yo. He is well controlled right now becuz his IBD is well controlled. His seizures seem to happen when he is sick (IBD or UTI, etc) or has some discomfort. He is on Keppra and Felbatol (he can’t handle phenobarb or Potassium Bromide).

Both boyz see a neurologist becuz they have been refractory to medications. They have been on phenobarb, Potassium Bromide, Keppra, Felbatol, Topamax, Zonisimide and I may be missing a couple. We have found the best combo for them right now.
They not only have grand mals, but also complex partial seizures as well as partial seizures. When they have CP’s or partials they need a drug that goes under their tongues. When they have grand mals they need rectal valium in order to not cluster.
They have both been hospitalized several times several years ago and put under general anesthesia to stop status.

They did come from different breeders, but from posts on an epilepsy site it does happen that a few have more then 1 epi in the household-not related. Odd, but it happens.

They are controlled better then they have been for years-but they still break thru, especially with CP’s. If I don’t ‘catch" a CP it can occasionally go into a grand mal.

So, they sleep in bed with me. I am also hard of hearing from my autoimmune inner ear disease, so I wouldn’t hear them if they were in another room having a seizure at night.

So, I have a feeling I won’t be able to do RAI. At least so far I’m not having side effects from Tapazole.

Oh, I think it’s important to say that the boyz are happy, joyful little guys. Tuck has even had 2 strokes (the first was diagnosed with a CT scan), but he is the energizer bunny and bounced right back. Tuck has some balance issues at times due to all the seizures and meds-but u all would really enjoy seeing these two play and cuddle.
They definitely don’t feel sorry for themselves, and are very brave and just keep going…a lesson they have been teaching me- and I try hard to be just as brave as they are…

I think it’s wonderful u were/are a vet tech!

[mom2pups]

#1061578

Bobbi wrote:Just a note: Kimberly, when I was immensely hyper, I also had some (minor) head tremors along with the hand tremors. It was pre-diagnosis for Graves, and I was sent to a neurologist who diagnosed the same thing — essential tremors. They both went away with the successful treatment of the hyperthyroidism. That said, I know it is completely possible for someone to have essential tremors AND hyperthyroidism. But in cases like mine, the cause was Graves.

Hi Bobbi, thanks for letting me know. Who knows, the head tremors may be from both-but now I know there is at least a chance it may improve!!

[mamabear]

#1061579

Thank you for letting me know… I was a vet tech back when you went to work there and just learned as you go. It was only 20 years ago and I’m only 37. Yep, right out of high school. It was fun, there were ups and downs and well I learned a lot. Glad to see the dogs are on a good plan. Make sure they are not "watching" the tv. I know it sounds silly but it can cause seizures.

I have 4 kids and have had my fair share of virus’. I use to be very afraid of getting a cold, I had a few after coming off of the meds and even had Rota Virus and of course was kicked out of remission and had to go back on meds. It blew donuts, I was so upset! But after having a few virus’ and even the Flu and not coming out of remission, I realize that it is what it is. I opted for not doing the RAI because the meds were working for me. I was amazed to see it help so fast, I am one of the lucky ones.

If I come out of remission I would do meds again and see if I am lucky again, if i’m not then I’ll sort that out when or if the time comes. I do not worry about it at all. I know my body and my symptoms and so does my husband.

I do have a rule in the house , everyone washes their hands when they come in. When I was quite sick, I use to make everyone do it but now it’s just us and the kids who do it. It doesn’t matter if we were at the store or the school, they must wash their hands. It helps keep down the germs, there is nothing like a mom taking care of 4 sick kids and then getting their cold on top of that!
One year when my 4th was just a baby, I had all the kids sick straight for 6months. Some at the same time, one would get better and another would get it or get something else.
This went on from November 06′ through April 07′. finally I said no more people in my home, I opened all my windows, washed everything with bleach, opened my doors and let the air come in and that was the end of this nonsense with the colds. I couldn’t take not sleeping anymore and this surely did the trick.

I still wash all things that people tend to touch when the kids are sick, like the door knobs and light switches and toilet handles…just to keep germs down. It’s more so so I help prevent colds than it is preventing me from coming out of remission, it’s not something I think of often. I know I have Graves but it’s in remission, i wont worry till it’s time to again if need be.

STay well ! Hugs those pups!

[mom2pups]

#1061580

Hi mamabear,

Thanks for the warning abt the puppers watching TV. I learned early on that we can’t have blinking lights on a Christmas tree, and no one can use a camera flash-Tuck immediately goes into a seizure. The boyz make life interesting, that’s for sure-but I wouldn’t trade them for the world.
Hugs delivered to the boyz, and much appreciated.

I am so glad u have been lucky with the ATD’s.

Four kids…makes me tired just thinking abt it!! LOL.

I have a question for everyone. Now I am definitely not complaining abt this, but I don’t understand. I spoke with the endo last Wed eve when he called to tell me I have GD. I started Methimazole last Thursday-just 5 days ago. When I spoke with the endo that Wed. eve I told him the heart palps were coming back 6 hours after taking the propranolol-so he increased the frequency of it.
The heart palps have been pretty bad for weeks…they seem to be gone now. It’s too soon for the ATD to make a difference like that-isn’t it?
I didn’t wake up this AM with heart palps (don’t think I did yesterday either). My asthma has been acting up the past couple days (I was well controlled before I started the Propranolol a few weeks ago) and I was wheezing (asthma) so I skipped the AM dose so I could use the inhaler. I just took the 3pm dose, but I still haven’t had heart palps.
I still have itching and the other symptoms, but this is confusing-would the ATD help in 5 days??

This came on so fast…can it leave fast too?

Thanks!

[snelsen]

#1061581

Hi,
I think the biggest thing for you to know is that you are changing every day, and reporting symptoms and changes to your endo are critical right so endo can regulate dose of both meds. The propanolol slows the heart rate, that is the purpose of this drug, so that your heart is protected from beating too fast. You still have already produced thyroid hormone circulating, so the ADTs help you gradually. When that residual is gone, I am hoping more of your Graves’ symptoms disappear. Keep in close touch with your endo re the heart palps. He will need to know where your are with your heart rate, he might want to reduce the prolanolol a little bit. It is all a balancing act, and a lot of it is you reporting all symptom changes to the endo so he can know how to regulate your dose of both meds.
Shirley

[mamabear]

#1061582

If I may ask… do you have Allergies that trigger asthma? What other meds are you on for your asthma?

I know I don’t have to say this but I can’t help it… Please make sure you bring a rescue inhaler where ever you go, keep one in the car and keep one on yourself at all times.

I wasn’t sure where you are from but anyone with or without asthma is having a real hard time with spring/late spring with allergies. Even people who are not allergic are getting breathing problems due to the amount of pollen. I do not have "asthma" but my allergies cause me have post nasal drip and thus goes into my lungs and poof asthma! It is only during allergy season and I dont take anything when it’s not allergy season.

Make SURE your pharmacy knows all of the medicines that you are on. Only use one pharmacy so that if there is an issue they will flag it. Also any information you need to know about your meds current or old, speak to your pharmacist about it, they are the most up to date people for that information. If something changes they will know.

4 kids…. I can’t be tired..not allowed till I have grandkids which wont be for a long time. But my promise is that I will spoil them all rotten…rotten to the core I say!!

[mom2pups]

#1061583

snelsen wrote:Hi,
I think the biggest thing for you to know is that you are changing every day, and reporting symptoms and changes to your endo are critical right so endo can regulate dose of both meds. The propanolol slows the heart rate, that is the purpose of this drug, so that your heart is protected from beating too fast. You still have already produced thyroid hormone circulating, so the ADTs help you gradually. When that residual is gone, I am hoping more of your Graves’ symptoms disappear. Keep in close touch with your endo re the heart palps. He will need to know where your are with your heart rate, he might want to reduce the prolanolol a little bit. It is all a balancing act, and a lot of it is you reporting all symptom changes to the endo so he can know how to regulate your dose of both meds.
Shirley

Hi Shirley, Thanks so much. I called the endo’s office this afternoon and spoke to the nurse. I let her know abt my asthma kicking up and what the pharmacist said to do this weekend with the dosing for the Propranolol, and that the heart palps are gone. So now they have all the info.

I was glad I called becuz she let me know I need to repeat my ACTH Stim test (endo thinks I have Addisons too) becuz the lab ran the wrong tests. <sigh> I live over an hour away and am a really tough stick (for the stim test they take blood 3 times). But at least next week I should know if I have Addison’s too. I prefer to see horses though rather then zebra’s!

[mom2pups]

#1061584

mamabear wrote:If I may ask… do you have Allergies that trigger asthma? What other meds are you on for your asthma?

I know I don’t have to say this but I can’t help it… Please make sure you bring a rescue inhaler where ever you go, keep one in the car and keep one on yourself at all times.

I wasn’t sure where you are from but anyone with or without asthma is having a real hard time with spring/late spring with allergies. Even people who are not allergic are getting breathing problems due to the amount of pollen. I do not have "asthma" but my allergies cause me have post nasal drip and thus goes into my lungs and poof asthma! It is only during allergy season and I dont take anything when it’s not allergy season.

Make SURE your pharmacy knows all of the medicines that you are on. Only use one pharmacy so that if there is an issue they will flag it. Also any information you need to know about your meds current or old, speak to your pharmacist about it, they are the most up to date people for that information. If something changes they will know.

4 kids…. I can’t be tired..not allowed till I have grandkids which wont be for a long time. But my promise is that I will spoil them all rotten…rotten to the core I say!!

Hi mamabear!

I am in Ohio. Last week u could literally see clouds of pollen blowing off trees, and then suddenly the wind would stop and there were clouds of pollen stagnant in the air.
My asthma does come from my allergies. I am allergic to many environmental things. I have been on allergy shots for years-but they are on hold for now since I am on a beta blocker.
I do use QVAR (a steroid inhaler) as well as a rescue inhaler-Albuterol. I also take Claritan.

Really u shouldn’t use a beta blocker (propranolol) with asthma-the same reason my allergy shots are on hold while I am on it. If u have a reaction, the drugs used in an emergency don’t work so well. But after talking with the pharmacist this weekend, I found that if I use more albuteral it is working fine. The allergist said I can do that–but use caution. If my asthma gets worse, or isn’t just bothering me in the AM–I need to wean off the Propranolol.

My tremors were really helped by the Propranolol. But I’m not taking the dose in the AM (doc knows) since that’s when I was wheezing. The albuteral worked just fine to help my asthma.

The bad thing abt it this AM-I had an opthamologist appt. Good heavens I was tremoring (hands and head) like crazy. I’m surprised she got all the tests done. LOL.
Thankfully I have no signs of the Graves eye issues.

I hope u do spoil the grandkids! It will be awesome when u have them!!!

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