[Healingcc]

in reply to: Confusing lab test results #1170348

Clarinette,

I also wanted to add something on the lack of a Free T3 number. I had little if any elevation of my Free T4, but my Free T3 was pretty high. There is something called T3 toxicosis, that many docs don’t look for. I got a second opinion, which was delayed 6 weeks. Had labs done and had a normal T4, and a very high Free T3, the following week, went back (as scheduled) to the 1st opinion doc, who didn’t believe in getting Free T3.

On that date, 6 days later, now my FT4 was above normal range, and he said, “see, we didn’t even need the FT3” I showed him the labs from less than a week before, where the FT4 was normal. Said, if you had seen just this, you would have said I was doing “ok”. He found it bizarre. Now that I have been
treated he “wants to check my FT3 out of curiosity to see where that is”.

Also, as it looks in hindsight, I have had Grave’s disease for years and years, where no one ever checked “those” antibodies. I have been all over the map, and can say, I felt just as “bad” with the hyper symptoms, as I ever did with the “hypo” symptoms. And most of the lethargy, etc as others have said, can be present with either!
You have both antibodies as I do, (I was diagnosed with Hashimotos in 1982). My endo recommended RAI because he said with both sets of antibodies, some try to suppress, others try to stimulate….you are at the Mercy of which ever antibody is “winning the race today”.

Meaning, if the blocking antibodies are more prevalent this week, you feel more hypo, if the Stimulating antibodies are more prevalent this week, you feel more hyper! He mentioned with the anti-thyroid drugs we would re-set me to a lower level, but I would likely still go up and down and fight different symptoms, just at that lower level.

Sorry to be so verbose, but I know it’s difficult when your labs don’t fit into
anyones “picture”. YOu need that Free T3 test to add to your picture.

Regards,
CC

[Healingcc]

in reply to: Dr House quote (incomplete – just TV)? #1170311

House is one of the least accurate Medical dramas on TV. Sure, they call certain diseases by the correct names, but the way they go about testing and treating is not done in any reputable medical institution.

I used to be a PA, and had to leave my career. I get my “medical fix” watching some of these shows, and some are more realistic than others. House, does not qualify here. It can be entertaining, and throw out some facts with the drama, but please do not use it as a basis for medical decisions.

Sorry that you had to see that and get yourself so stressed.

CC

[Healingcc]

in reply to: I need someone i can relate to.. #1170286

Keenah,

Glad you got such a lift from Ski’s wonderful post.

I am recently through with using I131 to treat my Graves. My treatment was based on a different set of circumstances so I have no experience waiting for the anti-thyroid drugs to take effect.

I do have experience with the “crazies” and the muscle pain. I walked off the golf course after screaming at my husband during my worst time. I have never, in 31 years screamed at him, and it was about a golf game. Even when you “realize” you are acting bizarre, the ability to stop and change directions seems impossible. I found it best to later, revisit the situation and give myself a break! Give yourself a break for awhile, and work on relaxation skills. Get some tapes, or CD’s that play relaxing music with slower beat. That can help to focus you, lower the heart rate a little and allow you to relax and get to sleep! Mind/body interaction is so important in every day life, in Graves, that is exaggerated too.

All those things, the eyes, the muscles etc have to be put into their own basket and viewed as temporary while you start to heal. I talked to my endo about trigger fingers that “i woke up with” Response: Everyone has different symptoms, I don’t know. I went to a hand surgeon, who immediately told me it was about swollen tendons resulting from my thyroid imbalance. Shouldn’t the endo docs know this?

I am on my way to 60 these days, and pointed out to the endo doc that patients, especially as we are getting older, feel 10 symptoms that no one pulls together make us feel like we are “falling apart”. If they could simply re-assure us that many are parts of the same process, they become easier to deal with. Hope you can find one of these doctors to really rely on, who will really listen to you. When you have confidence you are on the correct path, you will also relieve much of your stress!

Hang in there, you will get there!! If you can, Focus on getting your body healthy before you take on growing another little person in there. You will thank yourself later. As you feel better and rebuild muscle, you will be so much more comfortable carrying and birthing a baby!

My best,
CC

[Healingcc]

in reply to: Texas Grave’s disease patients #1170234

Hi Ski,

Thanks for your response. I thought I would give you the link to the basic article that I found this information in

Guess it is a copy and paste in web browser kind of link set up here. Anyway, this references what I said, and there are many articles in Endo journals looking at IgE Stimulation (allergic responses) and the start or recurrence of Graves Disease.

Yes, we who get this have a genetic predisposition. I have family members with other, one much more life threatening, autoimmune disorders. Everything in the world of our health is a combination of Heredity + Environment. We can only partially control one of the two.

My question is whether there is any insight here in Tx, where there is a very severe allergy season to Cedar. Anti-Histimines block the Histamine response, but I wonder if anyone has looked at whether there is a corresponding decrease in the IgE response?? Heck, wonder if it is a similar “kind of cedar” or if that makes any difference….yup, lots of curiosities from me :0)

I don’t believe the trigger ever becomes “academic’. Sorry to disagree. Avoidance of triggers is a clear and essential part of treatment/prevention of new symptoms. That is, of course, if in fact there is exacerbation of symptoms when the trigger is again encountered. That may be a trial and error situation for each individual.

Triggers can be other than allergic also. You, of course mention Stress which is HUGE in Autoimmune Diseases…but then, Sugar is a “trigger” for a potentially lethal response in a diabetic who does not have access to insulin, for example.

Also, we know that in many allergic responses, the antibodies created can multiply with number of exposures. Some people are allergic to Penicillin the second time they take it, the antibodies having been created on their first exposure. Some people take a medication for years, then the next exposure sends them into an allergic reaction. We don’t know who will respond which way. And of course, as you point out, there are likely other factors that contribute to the exaggerated response.

Sorry, getting a bit academic here, but I had a Medical Career for 17 years before another allergy “built up” and interfered. Took years for my Latex Allergy to build to a level that stopped me in my tracks.

I am very analytical in how I get on with this. May not seem this way, but I have a very relaxed and enjoyable life right now. Very few stressors. I find the research and analysis “fun”. Even my husband thinks that is nuts….lol

And that said, my symptoms have again decreased…funny, the cedar allergy count in the area is back to very low. Not proof, but something I must think about if planning to winter in Texas “forever”

Hope this wasn’t too boring. I appreciate your input. Just hope that each of us brings new questions….possibly then a “new answer”….someday.

My best, CC

[Healingcc]

in reply to: I’m back… For the third time :-( #1170192

Laurabee,

What does your endo doc say about the lab work? You have swung to a very Hypothyroid state based on your TSH. Surgery isn’t the only option, in fact is the US is seems most doctors don’t consider it an option, only the RAI. In Europe they do more surgery rather than the RAI.

As others have said, you will get many opinions here. I was fearful of doing RAI, but was advised the ups and downs for some on the drugs make it a poor choice.

Do based on how you feel, and your history you need a heart to heart with your endo doc. Ask if a definitive treatment for your thyroid, surgery, or RAI is in order.

my best,
CC

[Healingcc]

in reply to: If you had RAI…how long did it take you to become hypo?? #1169741

Leah,

I have found in my researching that it isn’t “rare” to have both Hashimoto’s and then Grave’s. Yet I have had others, including doctors tell me it doesn’t happen. I believe it is what confused the issue for so long. I have looked back at my “old records”, some of them back almost 30 years. Though data is incomplete, and some tests had different names I am able to get some comparison out of them. I had a “low TSH” with low T4 levels more than once, had ups and downs in labs way back. When I asked an old endo doc 3 years ago to check antibodies, I was told “you have Hashi’s, we know you have antibodies, no need to do them again”. Would have been nice to know if I had the Grave’s antibodies back then, which we now suspect I did. In discussing all this with the new endo guy, he said my symptoms for the “week” would reflect which set of antibody was more present at the time, and that that could change over and over. That is why he suggested antithyroid drugs were not a good choice for me, said it would likely re-set my levels to lower, but that we would constantly be struggling over which antibodies were “winning”.

That said, after 6 week on generic levothyroxine, my labs were “normal” but I still felt anything but normal. Nice to read a post in here saying, that your body “begins to heal once your labs get to normal”. Weeks 6-9 I made steady improvement, I am in week 10 and have had a tough week. Sleeping 11-12 hours a night again, and feeling very drawn out. Have more labs in about 3 weeks. I know this is a roller coaster ride, and have to ride out the lows and listen to my body, so sleep it is. I am getting exercise again, and making myself do it, as I had lost a lot of muscle mass. I am a big walker, doing often 5-6 miles 5 days a week, but had had to quit due to elevated heart rate, intolerance to heat etc. I am back to 3.5-5 miles most days, but very tired when doing it. I do feel the strength coming back.

I would say the earliest sign for me was the Resting Heart Rate as I posted. Went from 80 down, down, when I was hypo, it was in the mid 50’s. Now is back to 65 and steady. Everyone’s resting heart rate though is DIFFERENT based on your over all physical condition. Mine had been low due to all the aerobic exercise I do, so can’t judge my numbers to yours, you have to do your own and look for a trend.

Also a decrease in the hot flushing, to being chilly was a sure sign. One week I am sleeping with the windows open in November, two weeks later I am bundling up in extra blankets.

For me, I am not certain I know what “normal” feels like. Years and years of lab work when not feeling well, with values that changed a lot just shows my body was really reeling. When I thought I was always “hypo” I thought if they would just give me more synthroid, or what ever, I’d feel better. I found that too much thyroid, as in the Graves, can make you feel just as bad, or worse, that too little.

So it must be balanced, for your body and what you feel. I still will work on that. I am only on 75 mcgs of levothyroxine. I believe my endo guy will work with me, but there are many more lab tests to do to establish MY new normals, and how I feel…so have to work with it.

What I do not understand is the role of the antibodies in respect to thyroid hormones taken by mouth. I am in Texas over the winter, as I have done for years. We have tons of Cedar allergies here, which affected me for the first time last year. RIGHT BEFORE the Graves started. Stimulates the immune system, and may be contributing to why I am not feeling as good again. Endo doc not up to date on that. I read an article last summer saying the number one cause of onset of Grave’s in Japan is felt to be Cedar allergy assault on the immune system. My doc is in Mn, where I spend the other part of my year. Unfamiliar with Cedar allergies up there.

Always so much to learn from each other.

I am going to do a new post for people in Tx to ask this question.

My best, keep the faith

CC

[Healingcc]

in reply to: If you had RAI…how long did it take you to become hypo?? #1169739

It is very interesting to see how everyone is so very different in their response to RAI.

I had a long history of hypothyroidism, (Hashimoto’s) prior to almost 3 years of a suppressed TSH and finally significant hyper symptoms resulting the the diagnosis of Grave’s Disease. I used to be a PA, and so when the complete turn around to hyper symptoms occurred, I knew something was very wrong.

I had RAI and was told it could take up to a year for my TSH to even show up to the party since my pituitary had been “suppressed for so long”. At 6 weeks after RAI I felt miserable, but I have felt that way so many times over the last few years and told to “suck it up” that I didn’t go in early for labs. At 6 weeks my FT4 was 0.1 and my TSH was 42. So much for taking a year to show up.

Long and short of it is, there is not a “normal” way we, as patients, respond to these treatments. It is all individual and you have to be aware of your body, and your symptoms and whether they change.

I found it very useful to chart things. I checked my resting Heart Rate (before you even get up to pee first thing in the am, have a clock next to your bed and count it). When I began to get hypo, this was the first change I noticed! Also, keep track of whether you are hot/cold, itch, etc. Are you getting constipated? Another sign to note.

I actually went back and graphed all my lab work over the course of the 3 years they couldn’t figure me out. My TSH went down when my FT3 and FT4 went DOWN. They are to go the opposite ways. When docs kept looking at individual lab reports they had one answer…. “TSH is going lower you are getting too much thyroid, lets lower your dose” When I took in my graph to the new Endo doc and asked him to please “explain this”….he couldn’t. We are all Different. Don’t feel badly if you don’t fit into THEIR mold.

Also, We think we will “remember” how we felt on Tuesday. As most who have been through all this realize more and more in hindsight, we CRS!! One day melds into the next and the mental fog makes it more difficult. If you write it down, and see a significant change, go into the doc early for lab work. If it stays the same, wait the amount of time the doc recommends.

Been there, as a patient and a professional. I preferred the professional role!! Most docs haven’t had these illnesses and cannot relate to how we feel. I keep making that point to my doc, hoping I can affect how he responds to the next patients. I smile and let him know I am making him better for the next “crazy
woman with crazy labs”.

Hang in there!

CC

[Healingcc]

in reply to: Using skin laser proceedures #1170197

Thanks for the responses! I looked at the Kellogg site, and though there is a lot of mention about their areas of expertise, namely eyes, I did not find much about skin sagging etc. But there was good general information.

I am fortunate enough not to have typical GED, but that said, as I read some of these articles, the eye issues I have had over the last several years are beginning to fall into this category. For example, sunlight in my eyes, or wind causing significant issues. I even had an iridotomy for “narrow angles” because there was thoughts that my eye “pain” might be early sign I was getting narrow angle glaucoma. All fitting into place in hindsight!

I too used to look “younger than my age”. Used to win at the fairs where they guesses your age every time. Now, they would be off, but likely higher.

I am going to get an MD opinion at the Dermatology office, and also at the Plastic Surgeon’s office. My fear is that they have little understanding of autoimmune disease. Will also ask my Endocrine Doc yet he is about 35 and likely isn’t even thinking about “aging” issues.

I “woke up” with two trigger fingers while I was in the midst of my hyperthyroid state. My endocrine guy didn’t know, “everybody has different issues”; the hand surgeon, seeing my Grave’s disease diagnosis, said, it was obvious. A generalized inflammation of tendons so that they don’t “glide” smoothly. Asked if I had it in my feet yet etc. Did local injections, and resolved quickly.

So many things associated.

Thanks again for the posts. Will follow posts.

CC

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