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in reply to: Mild pulmonary hypertension #1183692

I suggest you establish a relationship with a cardiologist you like, to review the echo, discuss the LV systolic function, the mild tricuspid regurgitation (pretty common, but discuss with him/her) and the pulmonary HTN should be followed, but you can begin with the cardiologist.

None of this is urgent, like next week, anyway, most likely you could not get an appt. that rapidy anyway! (:

I’d ask your endo, and any friends who are happy with their cardiologist, if you know any, and proceed from there.

It is good to have these docs on board, establish the relationship, and baseline info.

You do have a lot on your plate, but it is all manageable.
I know, cause I have three cardiology issues myself! (:
shirley

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in reply to: TED (thyroid eye disease) seven years later #1183626

Debbie,
gosh, thank you for your thoughtful post. Of interest, but that is all, I did have antibodies and…hmm, I would have to look, I have forgotten the other test…
at the very beginning of TED, but it was to pretty much support what was already obvious, that I had TED. Which taught a lot of people in health care and on this site, that TED can occur five decades after having Graves’! Now that it has been a long time since anyone has even thought to check antibodies, I am curious to know if they are elevated..or not! I will see if anyone is willing to write the order for the lab.

Your wonderful knitting of squares is lovely for you, as well as all the other people who will just love to snuggle up under the blankets, during treatments, and long afterwards. What a thoughtful and productive activity! I have not thought of knitting for years, but I think I could “do” a square!

Cyber hugs received and appreciated! Maybe I will explore coming “down under,” from “way up here!!”

I don’t think my situation will change from what it is now. I am very, very grateful for the wonderful tape i found, that does not hurt eyelids and tender skin!

I am driving but avoiding bad traffic and crazy freeways as much as I can. I do not drive the freeway at night, and don’t need to. Generally daytime driving, except for very rare exceptions when I know exactly where I am going, and feel comfortable driving there at night.

Raspberry! Fortunately, some people really ARE done with TED! I hope you are one of them!

Shirley

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in reply to: Radiation treatment for double vision #1183643

Susan, the prisms are ground in my regular prescription. They are not the stick on kind, that are used temporarily. They do not show at all.
Although I don’t have double vision without my glasses, my eyes are MUCH mre comfortable with the prisms. I don’t have to strain at all. And since I need bifocals or trifocals anyway, adding the prisms is fine. Of course, the glasses RX costs a bit more that way. Worth every penny to me.
Shirley

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in reply to: Cancer and Graves Disease #1183658

Well, to be sure, i am speaking as another Grave’s person. My post may seem a bit questioning, but I think it might be helpful for to question some of your assumptions, in the best interest of getting the best care possible.

However, I cannot help abut respond to your assumptions that relate Grave’s to brain tumors. It is YOUR assumption. I suggest you try to find evidence based studies and research that support your thoughts on this. I find this conclusion that you have reached, a bit far fetched.

I also question your conclusion that your TIA’s were prompted by your Grave’s history. How o you know that>? Is that what you were told? You have had this diagnosis of Graves only 1.5 years. What prompts you to know that your TIAs are a result of thyroid storm. Do you know what thyroid storm is?? Here is a reference for it. Does this describe you? Were you hospitalized? It is a medical emergency. It sounds to me that you got a diagnosis of Graves’ ad began treatment for it with methimazole. With that treatment, it seems very unlikely that you did have thyroid storm. How did you reach this conclusion and diagnosis?

I challenge your assumption that predisposed genetically inherited autoimmune disease can skip a generation. This generation skipping stuff has been disproven multiple times. Provide the research and studies for yourself.

The carotid artery is a HUGE vessel. It is on either side of the thyroid gland. You can feel it on yourself. An ultrasound guided biopsy is pretty standard and simple stuff for a general surgeon. Very easy for them. I have scrubbed for them as a nurse.

Not sure where you live. I can speak only to Seattle (University of Washington, Swedish) and Iowa City,(University of Iowa Hospitals and Clinics,) places I know well, regarding referrals. Send a PM if you would like to discuss it.

It is good to focus on academic places, where there are plenty of patients, so surgeons who do thyroid surgery do at least 50 procedures a year..and in this case, I am referring to thyroidectomies. Much different than an ultrasound guided biopsy.

Not sure how you conclude the two TIA’s are a result of, or related to a thyroid storm. I question your assumption about this causal relationship. I’m inclined to think unrelated. Take some time, find some literature to support this relationship..I am not sure WHY you think you had a thyroid storm, or if there is a misunderstanding about what it is. Generally, it occurs to people whose Graves is untreated, this does not to be your case. And it is an emergent, life threatening situation where a person can die. Thyroid storm is a phrase that is not understood very well, and used when it does not really apply to what happened. If you had a storm, you would have been in the ICU, and very very ill, requiring a team of docs, endocrinolgists, surgeons, internal medicine docs, maybe pulmonary docs. Was this your experience ?

Heart condition covers many aspects of cardiology. Have you seen a cardiologist, been worked up by one? Did the CARDIOLOGIST say that RAI AND thyroidectomy both contraindicated?? That seems very strange to me.

I am speaking from my own experience, plus a familiarity with health care, having worked in it.

I have atrial fibrillation. I have left ventricular failure of my heart. I am quite old. None are contraindications of any procedures, and certainly not Rai, if you are interested in having that. I do not know how old you are, for that matters, re having TIA or heart condition If you want to PM to discuss this further, please write. Hoping Kimberlys’ references will be helpful to them I’ll read them too.

Were you untreated for a long period of time? Doesn’t sound like it.

Family history is very subjective, especially a few generations back. It is not very reliable.

I wish you the very best.

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in reply to: Radiation treatment for double vision #1183640

Hi Sue,
Yes, the strabismus surgery was done to correct the double vision. IT is an easy experience with an easy recovery, and the outcome was immediate. As in wonderful! You have a MAC (monitored anesthesia) which means they put to sleep with an IV. After then have moved some muscles around, you walk up, look at pictures and writing on the wall of the OR (operating room) tell them if you see one or two of objects or writing. They are large enough to correct for any vision issues unrelated to TED.

The hardest part was waiting to HAVE the procedure, for in the “hot” or beginning phase of TED, eyes are always changing, so the measurements or surgical corrections cannot be done reliably. When you get to the point where your eyes are not changing with every exam, and considered “stable” which does NOT mean just fine, it means that your eyes have not changed for a while. Then the strabismus surgery happens. Usually pediatric ophthalmologists do it, simply because they do this procedure frequently on kids (sometimes called squint surgery, somethings other things.)

The outcome was miraculous, and I felt that I had my life back. Able to safely drive again, read, and all that you already know about.

Yes, I function just fine with prisms. I have an exam from a pediatric oculo-facial surgeon every year or so..but have been stable for a long time.
I cannot tolerate having my glasses off!
shirley

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in reply to: Radiation treatment for double vision #1183638

Sue,
Pressure on the optic nerve is serious. It happens when the eye muscle get much bigger because of TED, plus an increase in orbital fat. Please ask your doctor for more explanation about this. It makes sense that you would be better with a course of steroids, but when they are tapered, then discontinued, you get worse again.
Pressure on the optic nerve can cause optic nerve atrophy. In other words, it can permanently damage your optic nerve, resulting in blindness. So, do follow through with you docs, or perhaps the kind I will mention in the next paragraph.

Is your eye doctor familiar with TED, thyroid eye disease? Maybe seeing a neuro-opthalmologist is a very good step for you to take. Have you considered this?

Regarding myself. I had pressure on my optic nerve, with vision changes, and I had an emergency orbital decompression. I had severe double vision. It is TERRIBLE! I could only look down, not straight ahead, or to either side.
As you can see below, I had many procedures, and severe TED. I do wear prisms in both glasses now, in addition to my regular corrections.

Shirley

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in reply to: Graves- Doctor says its time for RAI #1183651

Hi slem3,
I had a thyroidectomy. That is the other choice. I think this should have also been mentioned to you as an option. Not sure where you live, but like all surgeries, surgeons tend to specialize in certain procedures, so if you decide to do this, it is best to find one who does at least 50 a year. I did not want RAI. I did want surgery. It is a personal choice, unless there is a compelling reason that you need to understand and believe, of one of the other.
I think a second opinion is in order, or better still, if you are interested in a thyroidectomy. Make an appointment with the surgeon.
Shirley

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in reply to: TED (thyroid eye disease) seven years later #1183621

And a little bit more.

My eyes stream tears all day long. I am constantly taking off my glasses and dabbing them with tissue.

I have found that Systane gel and ointment for nighttime on the eye that I don’t tape…really helps. I use eye drops all day long, usually Soothe or Systane. Be sure to use non-preservative drops, gel and ointments.

For anyone who has TED, I suggest being very diligent about finding docs who are familiar with TED. And want to have TED patients.

Also, for some people, it is difficult, and sometimes not possible to work with TED in the active phase. This IS a real medical issue, and FMLA (family medical leave) should apply for time off, and your job will be protected. I think I am correct about this. I worked at a state university, so I am unsure how easy it would be to do this if you work in a very small business.

Shirley

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in reply to: ANYONE HAS AN ANSWER #1183574

Yep. I think you have them reversed, also. You have all the classic symptoms of hyper. Do NOT stop taking your ATD’s. You need them. ATD is anti thyroid drug, methimazole is one.
Shirley

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in reply to: newly diagnosed and a bit confused #1183546

Hi!!!
So glad you found us! I am hoping that your docs are coordinating with each other, and your visits are less frequent. I am so sorry that you have to deal with any of this. It is very, very hard. And I TOTALLY understand the complexity of having afib, too. I developed that a couple years ago. So now doing the warfarin dance, trying to get a good balance of green vegetables and red wine! (:

Since I am a fellow fib person, and this is new to you, I have a suggestion for you to follow up with your doctors. It is relevant especially, if you are taking warfarin (Coumadin) for the afib. Ask them if you should be taking aspirin. For it is my understand that both are anticoagulants.

As you know, we are fellow patients, and this forum is to share our experiences, and occasionally express our concern, and always we feel support for each other.

I am glad you and your doc have decided that a medical leave makes sense for you right now. I agree. You’ll be able to schedule appointments more easily, and hopefully group several of them in one day, until all of this calms down.
I am sure your husband will understand. He is probably scared and worried about you,and about all things.

I think it is very helpful for all of us who have Graves’ to remember that most of of us have never, ever heard of it, not did we know one thing about it. That is where our friends, employers, co-workers and families are. They don’t understand it, nor do they have a clue about the multiple implications of having it.

It’s important for you to know now, that you will be better after all treatment decisions are made, and followed through and acted on. This is a great site for you to read. The facilitators are great, and there so so much knowledge and support from others for you to consider.

I am not familiar with weight gain when hyper, but as mentioned by Kimberly, it has been my experience that pediatric endo seem to have had more experience with this. I lost weight from 130 down to around 100 when super hyper. You will read my history at the bottom of my post.

Things DO get better. They DO settle down. You WILL be better. And I totally understand that is nice for you to know. but now is now! I am so glad that you are taking the medical leave. You have a lot on your plate. WE all get it. It might be helpful for your husband to read some of the posts, too.

Shirley

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in reply to: Graves & TED – QUESTIONS #1183534

I had severe TED. Have IV pred as you did. As Kimberly said, it “lasts” just a short while.
You can see my history at the bottom of my post.

Be sure your ophthalmologist is familiar with TED. Probably a good idea to have that doc refer you to a neuro-ophthalmologist. That is who consistently followed me.
All the surgeries you see, I really had to have. I found double vision terrible to live with! The grafts from my mouth to my lower lids were a disaster, and I am sorry I did that. recovery slow and hard, and poor outcome.
The OD I had to have,and could now do the same on the other eye, but I have had so many procedures, I am DONE.

I wear sunglasses, a visor, use lots of eye drops, and have to tape one eye closed when I sleep. But fortunately, I am definitely an exception. Few people have severe tED. Especially 5 decades after having Graves.

Do write after you see the eye doc.
Shirley

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in reply to: Insomnia post prednisone use #1183259

Well, when I was on prednisone, I was WIRED! And that is when my motor was really running! kinda like hyper, but not really!

I have sleep issues, too. Also went to sleep clinic, stayed all night, with many wires on my head. Did not sleep well there, either. Hard for them to evaluate my sleeping, cause I did not do much sleeping! No apnea, and no need for CPAP, either.

I’ll mention the usual stuff, and say in advance, that when I DO get at least 30 minutes, if not more, of brisk walking outside, I do sleep better. And the other usual stuff. Try not to eat right before you go to bed, stay away from caffeine after breakfast…but I am sure you KNOW all this!

Sleep deprivation is terrible! I tried a few of the meds you tried, but they did not help that much, and I felt like a zombie in the morning.

I suspect your hair loss will become a non-issue soon. IT did for me.

Other than you going to a sleep lab, to be sure you don’t have sleep apnea, I have no suggestions for either of us! Just commiseration and understanding! Maybe we both will hear the magic answer!

I am also older, and I understand sleep is more elusive with age. Dunno!
Shirley

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in reply to: My Graves / Eye Story in Germany and USA #1183523

Hi auger,
Thanks for writing! Your story will help someone, for sure. So glad you have so much behind you. I had a tough time, too. My eyes still an issue, with light sensitivity, dry eyes, and one that won’t close. I did not have the nice TED experience that you had.

You gave a very nice summary of TED, which is such a mystery, and so many eye docs do not understand it. As you said, TED can recur. let’s hope it never does for you!!

Shirley

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in reply to: My Graves / Eye Story in Germany and USA #1183522

Hi auger,
Thanks for writing! Your story will help someone, for sure. So glad you have so much behind you. I had a tough time, too. My eyes still an issue, with light sensitivity, dry eyes, and one that won’t close. I did not have the nice TED experience that you had.

You gave a very nice summary of TED, which is such a mystery, and so many eye docs do not understand it. As you said, TED can recur. let’s hope it never does for you!!

Shirley

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in reply to: Methimazole trigger Graves eye? #1183413

I think, when TED diagnosed, I did have the antibody tests. But I did not care. TED is TED, and I realized I needed to slug through it, with multiple solar shield fitover sunglasses which I left EVERYWHERE, lots and lots of eye drops, which i still have to use, lifetime forever, for dry eyes.

They diagnosed it cause of my “classic” symptoms. At some point, I did have a TSH, and it was .0004 or similar.

I can’t answer re TSI antibody development.
Makes no sense to me that the antibodies pass through the placental barrier, cause pregnant moms are not tested for antibodies, so how would they know?

I think Graves’ occurrence is a crapshoot, with some soft evidence that someone knows of another family member who had Graves’.

Good question re women and men. Probably the only KNOWN answer is that someone counted them, and noticed it with the frequency of women with Graves’ Could be hormonal stuff. Again, not sure if there is evidenced based research on any of this.

You, of course, are FAMOUS!

Nope, between the initial dx until finally a dx of TED, no antibody testing..and that was to kinda confirm TED

If I had to choose, I would choose Grave’s over TED. Hate them both…a lot!
Would rather repeat chemo and radiation, as i might have said before.

There is controversy and opposing opinions exist about everything about Graves’.

But my life now is relatively good, with TED aftermath being more of an issue than Graves.

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