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in reply to: Why is TSH more important then Free T3/T4? #1182636

Hi Ann,
I am in the same situation. Always a suppressed TSH. Always! T3 and T4 usually in normal range. The references Kimberly mentioned, are the reasons your endo and mine encourage us to lower our Synthroid dose. But, for me, I feel like crap, have hyPO feelings, sluggish, and also developed GI issues, gastro paresis. I said that I could not live like that, so at this time, I am taking 100mcg 3 days a week, and 112 mcg four days a week.

I am older than you, in my seventies. My endo has been trying to lower my dose for years, cause he was concerned about osteoporosis and atrial fibrillation (Kimberly has nice references below for you.) Well, I developed both of these things. Could be age related, too. But i developed a fib last summer,and that is a real risk, so are the drugs you take to be anti coagulated.

The whole issue is, that I wanted to feel like a healthy human, do all the stuff I do. With the lower Synthroid dose, my life stopped and was hell. I can now walk three miles, enjoy it, have stopped drinking Ensure, and I can eat and enjoy food again. And my TSH is again suppressed. I guess, in my case, it is a life style choice, but accompanied by some risks. But I kinda feel I’D HAVE ‘the same risks if my dose was lowered, just would not have a life at all.

It is difficult. I don’t have good and easy answers for myself.
Shirley

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in reply to: Trying to make sense of TED #1182628

All good questions, I guess. But TED is pretty much managed by treating the symptoms.

And I did not care about any of the questions or the answers. Not about antibodies, not about thyroid levels, not about meds. To me, they are different processes, with a different path.

I think the main thing is that YOU ARE MISERABLE! The strabismus surgery will help you so , so much.

This is really condensing it down to the here and now, but you might as well have another opinion to go with your thoughts and Kimberly’s good references. The bottom line is, nobody really knows. And if they did, I’d still go with my symptoms, be so so glad to get rid of my double vision. It is hell.
Shirley

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in reply to: Eyelid retraction correction surgery #1182596

Hi, disability insurance not familiar to me. But your regular medical insurance should cover this if the doc writes it correctly with diagnosis of TEd.
Shirley

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in reply to: Graves’ Disease Outreach Event at UCLA Stein Eye Center June 14th #1182440

Kimberly,
the conference sounds wonderful! But is is just two weeks from now, and I can’t make that plan at this late date. And the air fares are much better (usually, not always) a month or more in advance. Dr. Chang is a great speaker and wonderful doctor.
Shirley

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in reply to: So now it’s the eyelashes #1182587

Hi, yes, I have eyelash issues, but they are different. Due to one of the six botched surgical procedures on my eyes and lids, my lower eyelids were positioned to kind of “turn in.” As a result, some eyelashes, touch my eyes, and it is like a foreign object irritating my corneas. Resolution, so far, is to have them yanked out about every month. I can’t do it myself, cause I can’t see that well. A slit lamp is need at the docs. I’ve been very pleased with opticians doing this rather than ophthalmologists.

Regarding you situation, I have not had hair or eyelid issues at all. Not sure why, I think it has been pretty common.

Emotions were off the wall when I was really hyper, but I can say they have remained that way over many years. I have always made lists of everything, all my life, love to check things off when I have done them!

I certainly why you are not happy about your eyelashes. I am not sure if they change as we age, or not. No idea.

You have bend dealing with all issues for quite a while, and I hope you get a “break” permanently, for Graves’ symptoms.
Shirley

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in reply to: Help with Lab Results please #1182567

Hi Lilly,
I know that you, like many of us, have been dealing with this for a while.
You seem familiar with your labs, and the TSH is suppressed, indicating that you may have too much thyroid hormone, but as you can see, your other labs are within range.

I took a look at your prior posts and it appears that over time, you have chosen to manage Graves’ with ATD, not RAI or surgery.

Regarding weight, it seems to be an ongoing issue for women. In other posts, Kimberly has had excellent advice in that area. Generally, as you already know, portion control and exercise and activity are the “answers.”
Clinically when someone is hyPO they are inclined to gain weight, be sluggish, etc. And with hypERthyroidism, generally people can lose some weight, but it is not a good weight loss, for it is frequently muscle, and hyperthyroidism is not a healthy place to be.

As I recall, you have several autoimmune issues going on. Maybe a good idea to make an objective and subject list of stuff going on, and see a good internist. Or perhaps an orthopedic surgeon about your foot.

Regarding sleep, that is another universal problem. When you say sleep aids, I am not sure if you are referring to meds, or to devices for sleep apnea.
Sometimes people can have sleep apnea and not know it.

Regarding remission, I guess it is defined by feeling totally fine, having labs within range, and moving on with life with no thyroid issues. Kimberly can speak to this, for I don’t have any idea of the incidence of remission. My guess is not much. I continue to subscribe to the fact that once we have Graves’, we always have Graves’. And even with a defined remission, it can and may recur again.

Sorry you are having such a hard time. I have gained a few pounds for the first time in my life, and it is humbling and frustrating. Especially in my belly. So i am doing the portion stuff and the walking regimen. Harder for you if your foot hurts, so I encourage you to address that soon.

Not sure how recent your labs are, but perhaps you should check with the endo or another doc on how to proceed with your meds. Or perhaps consider the other treatments other than ATD’s.

Shirley

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in reply to: Time to recheck labs… #1182563

Hi Sara,
It is 13 (long) days until your appointment! If I thought you had ANY chance of getting an endo appointment sooner, I’d say “go for it.” But I am sure that you most likely cannot, judging from the availability of endo appts. So, I’d tough it out.

BUT..be SURE to get your labs drawn BEFORE the appointment. Call the office on Tuesday, tell them to send the orders to the lab for thyroid labs (and that you have an endo appointment, and to have the results before your appointment.) That is the only thing that makes any sense, EVER, when you are going to see a doc, and labs have been or will be ordered. Can you do this?
Then, you actually have something to talk about, rather than the doc saying,
“Well, let’s get some labs.”

And yes, it does seem a long time, but probably it is assumed that you are doing well, since they have not heard from you with your new symptoms. You may well be moving into hyPO territory.

Alternatively, you can call, state your symptoms, and hope that info gets to the endo, request the labs, get them pronto, (can you look them up yourself??) And maybe if you are hypo, he/she will up your thyroid hormone before your appointment. You are right, it takes at least 4 weeks, six is better, to see “where you are” with your new dose.

Is this helpful at all?
Shirley

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in reply to: Documented Long Term Graves Effects in Children? #1182541

Hi, getting extra time is easily done. I did it for two my three kids in college. A letter from me sufficed, but a letter from the doc is better, I think. My kids were SLOW, but got the information if they could go at their own speed.

And I think you should definitely do this. A big stress reliever, just to know the timed tests were not hanging over her head.
Shirley

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in reply to: lifting lower lid simply by massaging it upwards. #1182498

Yes, it makes a lot of difference if you are pre or post any eyelid surgery….and how long after if you had it.
I did not think to do this, but I cannot see any scars at all on my upper eyelids.
Shirley

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in reply to: trying for remission – 6 weeks med free #1182510

Hmm. Are you in Canada or Europe? Just asking because of the drug you have bent taking/
Kimberly is much better than I am addressing TSH, T3 and T4. To me, the range is the range,and all your numbers are in the range. I think the T3 and T4 lag after the TSH.

My thinking, from your post, is that you need the “tincture of time” to see where you REALLY are withouT your ATD’S. You have been on them,so now that you are off meds, you MAY revert to your hypPERthyroid state. Not enough time to know yet, and you did not say how you feel now. From what you said, this is a rather independent decision to go off ATD’s to see if you might be in remission. Guess that is one way to find out But be careful, have more labs, cause you don’t want to end up in full blown hypER. Not fun, and not good for you.

Looking forward to Kimberly seeing your post.
Shirley

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in reply to: Euthyroid Graves block and replace #1182515

Interesting diagnosis. Some questions from me.
Were you, at one time, hyperthyroid? How in the heck did they diagnose Graves if labs are within range.? Other clinical symptoms along with this? What prompted to think of euthyroid Graves? Did you have any treatment any other time for Graves?

My two cents.
Your problem now is severe TED.
Graves’ and TED are totally different diseases/Sydromes/whatever you want to call them, different antibodies, different processes.

I suggest you begin to see a neuro ophthalmologist to get a good baseline exam of your eyes for your TED. Severe TED is HARD! Just ask me.

As you are wondering, I don’t think block and replace, and/or any other thyroid hormone therapy has anything at all to do with TED.

Love to hear more information from you..
Shirley

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in reply to: The dreaded ATD itch #1182471

Hi, it seems your doc is doing the reasonable right thing at this time. It is a total pain to be taken off your ATD, and presents a whole bunch of new problems and decisions.

As you have seen in the forum, itching is a problem for some who take ATD’s.
The only other suggestion I have, is to continue to watch your labs, and ask your good doc if he will check your liver function, if that is not happening already.

People who have not experienced itching, do not understand that it can be every bit as disturbing as pain. Glad the benedryl is helping. And hope all goes away soon.
Shirley

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in reply to: Anyone here an expert on lab results? #1182032

Hi conniepie, how are you doing? To repeat, of all the labs you got, the ones that matter for Graves’ (especially since you have a baseline for everything under the sun….!( The labs that matter are the thyroid hormone labs, PLUS how you feel.
And your labs need to have the RANGE stated right next to them. The standard ranges vary (not a lot, but some) according to the lab.
For instance, The GENERAL range for TSH is around .4-4.5. So your high number of your TSH indicates you are hyPO. I am just stating what you can read in any reliable website or academic discussion of labs. Think I said all this before.

So, seems like you do need an different endo, OR if that is difficult, some internal medicine, and even some primary care docs really know about Graves’ cause it sounds like you REALLY need a good and informed doc with your Graves’.

I’d stay away from the compounded meds. They are not regulated by FDA, and it makes another variable that is pretty much unknown when treating Graves.
Shirley

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in reply to: Double vision worse #1182461

Hi scanders,
I feel your pain and frustration about all of this. A couple of comments from my own experience. By now you have a few more days to evaluate your latest change. I did get several different prisms when the double vision occurred again, and they did help. Like you, patching one lens or eye, makes it magically ok with single vision. A glimpse into what a normal life will be like some day.

I know I told you in the other thread that NONE of my eye docs or ends did not correlation at all between thyroid labs and TED. I wonder if your surgeons are simply reacting to your concern about your thyroid labs (totally have forgotten what they are now, did the surgeons look at them? or did they make their decision to wait because of your concern?)

I don’t claim to dismiss thyroid hormone labs and TED decisions, but I kind of do, because every doc I went to for TED, had no interest in even knowing them. This includes the endos, the neuro-ophthalmologists, the ends, the rest of the surgeons. My labs has stated that I have been hyper for years and years (meaning on the lower end of the range of .4-4.5. This is not one of the variables they considered when deciding to move on to do the first surgery. I had double vision for so long (over a year) and it was so life-changing, that we decided to do the strabismus surgery to achieve mono vision, and if indeed, there were more changes after that surgery to double vision again, we’d just do the surgery again and tweak the muscles a little bit. I was more than willing to do this. It is a simple procedure, with few risks if done by a doc who does it all the time. I have found that those docs are pediatric eye surgeons.

I guess, in my case, it would have taken a lot of convincing for me to wait any longer for the strabismus surgery. I am not saying it is right. I am saying that I’d be in the looney bin, never to come out, if I continued with double vision. We’re all different, and that was my line in the sand. I am glad the docs felt the same way, and proceeded to go ahead with strabismus surgery, even though my eyes were were not rock stable. They said that it was possible to need to re-do the surgery if double vision recurred,and i did not care at all, just said, “bring it on!”

I wish you the best of the best. Those of us who have had severe TED have had even a more traumatic experience that those with mild TED. I still have to tape one eye closed at night. This will be a lifetime thing.

Shirley

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in reply to: Communication with MD #1182418

Not a problem for too long (which it isn’t) OR to rant! Thanks for writing.

I’ll have to defer to academia, and maybe NO DOC really knows yet, but in my experience, both with Graves’ and TED, thyroid levels are not a variable for making decisions about TED surgical procedures.

And I am assuming you mean the TSH, T3 and T4.
And I really don’t know. My thyroid levels, meaning the above labs, always indicate that I have too much hormone circulating, but when we try to reduce it, I turn into a zombie with huge GI problems. I don’t like to have a suppressed TSH< cause it is not a good idea. I am not a good example of an uncomplicated Graves' TED person. From what I think I have understood, TED is a related, but separate autoimmune process. And the two things for consideration for TED are:
-eyes changing all the time, based on tests and the patient
–eyes seeming to remain stable (not changing every day)

Docs did not consider my thyroid levels AT ALL for TED. They did not even ask about them.

And the indications for surgery, done in the right stages is important, are:
First OD if needed for eyes popping out of your head, and **decreased vision, which usually is optic neuropathy, which is pressure on the optic nerve. The pressure needs to be relieved, or permanent blindness results. And if this situation occurs, it can and should be done in the active phase.

Next-Strabismus surgery, to move the origin and insertion of the eye muscles that has caused the double vision. Easy to have the surgery, and generally, the outcomes are wonderful and immediate. No more double vision. Usually they wake you up in the OR, have you look at charts, to see if they have moved he muscles enough.

Next-eyelid surgery, to lower upper eyelids. Or, to raise lower eyelids. Raising lower eyelids is a big subject, and I would not do this again. Lowering eyelids pretty easy. Usually they are too high and too low because the eyes are protruding, not everyone has an OD for protruding eyes, it varies with the amount of exposure of the eye and the personal preference of the patient.

So, from my own experience, as described above, in response to your comment,
“So, since all of these docs have access to my record electronically, and again, thyroid levels are a pretty key part of the eye disease (isn’t it?),”

I did not think it was at all related to decisions regarding proceeding with OD, and the rest of the surgeries. I was going crazy with double vision in almost every direction. TED decisions were made solely on trying to figure out when the active phase was over and I was stable enough to have strabismus surgery.
(with the exception that I WAS losing vision, and HAD to have OD in active phase.)

So in summary, I think this is a question for you to pursue. So I tend to agree c #2. And for #1, it seems really dumb and unprofessional to push on eyes to determine anything by pushing on eyes to feel the “tension.”

Your life will change very happily when you have single vision again.
But TED will follow me forever. My eyes do tear, I need eye drops which really don’t’ seem to help, and any light bothers me, even when it is cloudy outside. I wear a lot of slip over sunglasses over my regular glasses.

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