[runlacie]

#1018026

I’m at my wits end. Dx’d GD 2 years ago, RAI in 7/2009. Went hypo fairly quickly, within 2-3 months. My Levoxyl dose has ranged between 50mg and 88mg. I went borderline hyper on 88mg. Currently take 75 MWF and 88 on TuThSS. Throughout the whole ordeal, I swear my thyroid randomly spits out it’s own hormone and makes me feel hyper for a few days. Often, a slightly sore throat (similar to after I had the RAI) accompanies this. Since I weigh 135, my total replacement dosage would be around 112mg. so I am guessing that my thyroid is not completely kaput. Is it possible the remaining damaged tissue acts crazily like this?

I am a runner and train with a heart rate monitor. These episodes are accompanied by the same type of heart rate increase that occurred with my original Graves’ symptoms. I notice that harder efforts cause a very fast spike in heart rate and have a much slower heart rate recovery afterwards. For example, running up a hill… HR spikes quickly and takes longer to come down on the descent. My overall runs when I feel like this will result in an average HR 10-15 bpm higher than when I feel normal. My resting HR is also slightly elevated and I especially notice a faster HR when I am in bed ready to sleep.

In addition, during these hyper feeling times, I notice other symptoms such as shaky hands, palpatations, feeling warm, excess sweating, massive anxiety, restlessness, etc.

My tsh was in the 2’s in January. I actually felt pretty good for the 2 months leading up to that reading. I had been taking 75mg, but we decided to up Levoxyl just a little to the alternating 75/88. The hyper feelings have been very bad for the past two weeks and about a week ago my tsh was 4.79- borderline hypo. If tsh shows an overall picture of the past month or 6 weeks, is it possible that I am feeling this way from a haywire thyroid and the tsh hasn’t moved accordingly yet?

My endo says "could be" that my thyroid might still be functioning some and making me feel hyper sometimes, but I’m not sure what I can do. Sometimes I skip a dose or cut a pill in half because I feel like I’m just too hyper. Often this has helped, but in the long run I wonder if I do that if it makes my crazy thyroid think it needs to produce more of it’s own hormones. I had actually cut back very slightly in the days leading up to my last tsh, is it possible then that maybe that tsh reading could be higher because my body noticed the difference and kicked up the tsh and made my broken thyroid produce too much of it’s own and now I’m in some kind of wild thryoid ride?

I’m very frustrated with this. Any help or similar stories???

[Bobbi]

#1062283

Hi — While it’s nice to "see" you back, but I’m sorry you’re having problems.

The first thing, and THE most important thing despite how hard I know this will be for you: Do Not Mess With Your Meds. You obviously sort of get this, already. But there is no way to determine via a blood test whether what is going on is your thyroid, or your meds, if you are tinkering on your own with your dose. You absolutely must stay on one consistant dose for a minimum of six weeks in order to tell whether the dose is appropriate. And, without knowing if the dose is appropriate — on average — there’s no way to tell whether what is going on with you is related to your thyroid or to something else.

Something else? Well, I have a friend who is not a Graves patient who was in and out of the emergency room for almost a year with issues somewhat similar to what you are describing. Her heart rate would soar. Her blood pressure would go up. Palpitations. She wore heart monitors to try to figure out what was going on. It was terrifying for her. And it turned out to be a side effect to a medication she was taking for pain from a herniated disc. The minute she stopped the medication, the problem went completely away. This is only one example. There can be others.

One of the reasons why so many of us suffered for so long without a Graves diagnosis is that the symptoms — racing heart, yada yada — are so similar to OTHER problems or issues as well. You and I (and everyone else on this board) are so used to blaming Graves for these symptoms, that we sometimes forget that thyroid is not the only thing that could be causing these oh, so familiar problems. But there could be other things going on. You need to be able to rule thyroid out (or in) completely. And the only way to do this is to maintain a consistent dose of replacement. And keep a log. Become a scientist and observe ALL the conditions which surround the problem for you, and write it down. When you feel the palpitations/have a heart rate soar, what are you doing? What are you eating? Are there medications involved? Was there a particularly stressful series of events? While it would probably be relatively simple to fix if it turns out to be your thyroid, if it is not your thyroid you need find out what IS going on.

I would also recommend, for safety’s sake until you determine what is going on, that if you KNOW that running uphill creates this problem absolutely every time, stop running up the hills. Walk up the hill, shorten your runs, until you figure out what the problem is. If your training routine is straining your heart, rather than training your heart, you need to back off.

[Blue0909]

#1062284

Hi There,

I can completely relate to what you are saying. I feel like my thyroid has a mind of its own. I did RAI but my thyroid was not all the way shut down. My endo told me that at times my thyroid may put out extra burst of hormone as a result. I am currently not on thyroid meds because my levels are normal. The RAI worked enough to make me not hyper. I can usually tell when something is not right. I usually have high anxiety that comes along with a rapid heart rate and tremors and I get really hot. This usually happens several times a week so I know how you feel. I wish there was more we could do to control this but we can’t. Hopefully journalinng will help out. Best of luck.

Blue0909

[runlacie]

#1062285

Blue – thanks for your response. It sounds like you feel some of the very same things that I feel. I need to find an answer as I’m slowly losing my mind over this. If I had to choose again, I would definitely not choose RAI. My dosage was too small, only 5.4 mci if I remember correctly, to kill it completely and now I’m left with this demon. If I had to do it again I would go with surgical removal. I think my next move is to convince my endo or a new endo to remove it.

Bobbi – thanks…Yes, I try hard not to mess with my meds. My endo called Friday and bumped me back up to 88 every day (due to the 4.79 tsh) and I’m not pleased about it. But I’m going to try and if I still feel bad I guess I will just keep whining to her. I should have mentioned that I have been under cardiologist care for many years due to PVC’s and been completely checked out. He knows my history and that I run a lot. He also says he agrees that too much thyroid hormone will give me the symptoms I described earlier with the quicker HR peaking and slower recovery. I guess what I’m looking for is what can be done about it? Is removing my thyroid surgically what I need to do? Is it possible to test my thyroid levels more frequently so this roller coaster could be observed? and how can I convince them to do that? Shouldn’t levels stay somewhat even and if they for instance were to test me every few days could that maybe show what’s going on?

I also wonder if perhaps running plays some part in it all. I run 60+ miles per week and sometimes race. I notice an increase in the hyper symptoms after racing and after long runs. Since the body naturally releases thyroid hormones when you run (or at least I think that it does) maybe running is causing my poor damaged thyroid to try to do it’s job and it goes haywire? I have thought about and tried to convince myself that I should just quit for a month and see what happens. But I continue to lace up my shoes (sometimes in tears) and head out the door.

One other note is that I also have Hashimoto antibodies. This was discovered long before I got Graves’… the doctor waitied for me to go hypo, but SURPRISE… I got Graves’ instead!

[snelsen]

#1062286

Hi, I am going to address just a few things in your post.
If you have Hashimoto’s and Graves’, I think it is well worth having your situation reviewed by either you endo, or going for some good second and third opinions. Also, put those two words together in the search engine, and you will be able to find others who have your situation. It gets more complex to manage with both conditions going on.

You can ask your doc, and do some evidence based research on this, but the studies I looked at regard strenous exercise and the relevance to thyroid production to be a non-issue in terms of how you feel, or a need to change treatment.

Lab tests. Your TSH was high, which means you might have a too LITTLE thyroid hormone, which is why he increased the dose. That was the right thing to do.

Re testing. There is no useful information to be gained by lab tests any more frequent that six weeks, and two months is better. As a matter of fact, it would be poor medicine to make decisions based on frequent lab tests. For it would not represent what was really going on with you.

Good for you, running and racing! Such a healthy thing to do~ However, it does depend on where you are with Graves’ and Hashi. Since you are presently on a roller coaster, and not at the "sweet spot’ you want to be with your meds, I suggest you check with yourself and your doc, and this is not the time to push and stress your body to the max. But cut down quite a bit on your runs. Try to take it a bit easier while you get your meds and you on a more even plane…
Write again!
Shirley

[paleblue]

#1062287

Hi Run Lacie! I have been meaning to write you for a few days, and just have not had time to sit down to the computer and do it. I am a big runner w/ Graves Disease, and I am just so happy to see that someone else runs the big miles and struggles w/ GD. I wanted to make two small comments about your post. One, sometimes, from what I understand, being hypo will cause the racing heart and heart palpitations just like Graves will. So see if the upped dose helps things.

I am on meds, and my Graves has flared twice. It is near impossible to attribute these flares to anything, but I have noticed that both times it has flared I had recently made a big change in my exercise routine. I do both Ashtanga yoga and run, but I’m always struggling about the balance. Doing both means I’m not as dedicated to either. So once in awhile, I’ll try to drop one. The first time, I dropped running, and did only yoga for a month. After a month of this, the Graves flared. So I spent a year thinking that I had to run to do yoga. This year, I decided to drop yoga for a month and only run. Well, sure enough, within a month the Graves flared. Now this could be a coincidence b/c this happened in the winter both times, so you could say it is winter that does it, or it could just be a mystery. But I wonder if big changes (running more miles, running less miles) to one’s exercise routine could affect the system.

So those are my two comments. I will always exercise w/ Graves b/c it makes me feel strong, and I think it’s good for me. The Graves state doesn’t last long for me, and I’m ususally taking 1/4 a pill every other day–except for these two flare periods. I must say that my doc is starting to push RAI though. Also, she says if you were exercising ahead of time, there is no need to change your program b/c of GD.

So happy to see another runner out there. I’ve done a few marathons, but haven’t done one in a long time. But I still like to run 4-5 times a week. I plan to do that until I can’t.
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[runlacie]

#1062288

Hi Shirley, thanks for writing and I appreciate the info on Hashi’s and Graves’. I wish I had known more before rushing into RAI. I just wanted to be better asap and thought that was my best choice. I guess what I’d like to learn by more frequent testing is that I’m not crazy and the ups and downs in my levels really do exist. I know I’m not imagining all this but maybe it’s not my thyroid.

paleblue, YAY another runner ” title=”Smile” /> Your info on changing your exercises is interesting. I really do think that when I keep my mileage and my dosage steady that I don’t get the ups and downs as much. And I swear that when I race or run hard that I get a little sore throat after and then get the hyper feelings for a few days. How long have you had Graves’?

Well, I’ve been good and I’ve been taking my upped dosage. I felt pretty okay until today and now feel all hyper with a higher HR running. My resting HR stays low but when I stand up, instead of my usual standing HR.. that’s where I notice some elevation.

Possibly some bad news (or another piece to my puzzle) is that I just got some bloodwork back, my elbow joints hurt me and I went to the GP about it. He did a bunch of bloodwork one of them, the ANA came back positive. RA was neg, and my CRP and ESR were both fine. So, I’m wondering if an elevated ANA could be due just to the Graves’/Hashis. I read on the internet that it could, but the nurse said no. I go back to the GP tomorrow if they can get me in, or if not on Thurs. so probably more info and more tests then. I just hope it isn’t Lupus or some other autoimmune thing. If anyone knows about or has had pos ANA, please tell me what you know… thanks!

[kristy02]

#1062289

Wow!!! I just read your post and this is so similar to what I have been going through! I was diagnosed as hypothyroid about a year and a half ago.However in the past year I have had a terrible time! I was waking up at night with panic attacks and the feeling of just uncontained enery I have always felt like my thyroid was on this crazy rollercoaster too. I will do fine for few weeks and feel like I have plenty of energy and then for about a week I was so tired I couldn’t pull myself up out of bed! I decided myself to stop taking the synthroid and see what that would do, it was crazy the panic attacks nearly stopped. One of the last thyroid test I had done showed my level at 15. I still decided not to go back on the medicine. I actually started about 2 months ago going to a weight loss doctor because after having two children I have a little extra baggages. lol One of the test they like to do is a thyroid test I din’t say anything about being on synthroid previously or the test I had done about 6 months ago. I kept thinking maybe I should have but decided against it and I am so glad I did. The thyroid test came back that time perfectly within the normal range with being off the synthroid for about 8 months. That just doesn’t make any sense to me at all. I know both of the test are right and mine I saw with my own eyes the results. So I am with you I feel like my throid is still making the hormone every now and then. And when it was making it while I was on the synthroid my levls were too high and causing me to have the panic attacks. I have read that panic attacks are a side effect of hyperthyroid!! It is so frustrating because I feel like the dr doesn’t want to here that or even think it’s possible. So I am going back with the two test results in hand and see where that will get me!!!

[Ski]

#1062290

Luckily, this worked for you ~ we have to advise against changing med doses (and discontinuing meds) without any discussion with your doctor, because if you’re not monitored by the doctor as the changes are made, there’s no way for them to understand what’s happening if things go awry. If you had ended up in an emergency room, severely hypothyroid, the doctor would look at their records and scratch their heads, because according to everything they’re looking at, you’ve been taking xxx replacement hormone for 8 months, so how could this be happening? It would delay resolution of the problem.

All I’m saying is that one initial appointment with your doctor where you discussed this and agreed to take this path, get tested along the way and make changes as the lab results dictate, would have been safer and would have ended up exactly the same way.

Medications/hormones we take can act differently when we start/stop/adjust ~ for instance, if you were on a beta blocker for irregular heart rhythms and just stopped taking it altogether, you could start a new, more dangerous set of irregular heart rhythms, because you must stop taking beta blockers slowly in order to avoid this affect. For that reason, it’s best to have a medical professional on your team who knows your med status. Even if you act against their advice, informing them as to what you are choosing to do is very important.

[goldendog]

#1062291

Hi I am new to this site, but old to GD. I have a genetic form of graves and have suffered its wrath for over 50 years. I had RAI over a year ago and have been mild to moderate hypo since. I have long wondered if exercise increases your thyroid function, since my graves syptoms seem to be worsened by heavy exercise. I was glad to find out I wasn’t losing my one blond brain cell. I am currently on 88mcg and crumble from the minute I take it in the morning. I too believe in not messing with the dose, but I am stressing my marriage so bad that two days ago I dropped it to 75mcg. The dose is good and I seem much more stable until I take our golden puppy for his walk and about 1/2 hour after we get home (it is a mile walk, far for an old lady), I turn into a raging manaic. I go tomorrow to have my colestral and thyroid tested. If anyone knows how to control the moods without drug treatment I would appreciate the advice. I have tested the patience of my husband of 32 years far to long and he is showing signs of the stress also. It is such a tough illness for everyone and I always feel so bad about stomping everyone around me. Thanks for letting me say this.

[Kimberly]

#1062292

goldendog wrote:If anyone knows how to control the moods without drug treatment I would appreciate the advice.

Hello – This is a challenging issue, as it can be difficult to untangle which symptoms are due to our thyroid imbalance and which might be due to another underlying disorder. Getting your thyroid hormone levels back in balance would be an important first step, but I do know of Graves’ patients who have had success with anti-depressants or anti-anxiety medications. This would be a good subject to bring up with your doctor.

Following is a great article from our web site that talks about the mental and emotional symptoms that can come with Graves’. (After viewing the article, you will need to use your browser’s "back" button to return to the boards — if you close out of the article, you will exit from the board as well).

http://www.ngdf.org/cms/modules/files/u … 784485.pdf

Graves’ can absolutely put a strain on family relationships. Everyone here understands what you are going through, so feel free to vent here as needed!

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