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in reply to: Complete Thyroidectomy #1063359

Hi Steve, welcome, and I am so glad you got a quick response from Ski! It is stressful to not have a complete understanding and familiarity with the medical world! Everything Ski said, is, of course, spot on correct.
I would like to add that after my thyryoidectomy, my calciums levels were elevated for a few days, also. This is not uncommon, and usually resolves. Sounds like you have very good attentive docs, but perhaps there was not enough time taken to reassure you about this. I think you will find that it will be a non-issue in the very near future.

I don’t know if your wife has been on this site in the past, but it is very helpful for information and reassurance.
It might be very helpful for both of you to go to the search box, try "surgery," thyroid surgery" a few combinations. There are several good posts about the post op course, some of them are quite recent.

Best wishes to you with the path report. Most nodules are benign, as the doc may have already told you. But one very typical comment docs say to patients who may have a papillary cancer, which is quite rare, is:
"You have the best cancer there is to have. IT is very treatable. You can probably read that, or may have heard it from a doc already.

Sorry you have dealt with Graves’ for such a long time. It has been a difficult road for all of us.
Do write again with more questions, further updates.
Shirley

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in reply to: Remission? What do you think? #1064168

Hi Kelly, I presume you have read all the posts on this thread. There is a lot of good information in them.
Of course you should certain mention your family history. That is important. But from that point, it is probably more productive for you to focus on YOU, and your physical health. YOu have spoken to three endos and one ob/gyn person.
They are probably a better resource for you,(than getting a book about a very complex subject and trying to reach your own conclusions) augmented by the emails of the facilitators in this thread, to have your questions about meds/pregnancy pretty well clarified.
As Kimberly mentioned, it is optimal, definitely preferred, to get to a euthyroid stead state. before getting pregnant.
YOur endo, whomever you choose, can work with your ob gyn on managing your pregnancy. Again, the studies really are quite clear about ATD’s and pregnancy, and what Kimberly stated in her last post reflects those studies and the experience of others on this board.
Maybe it would be helpful for you to write down your own map/plan step by step.
1. Work with endo on getting to euthyroid state before getting pregnant.
2. Line up your docs, decide on them, tell them of your plans.
3. Proceed to try to conceive when you are ready, coordinating with the docs.

Don’t know if this helpful for you or not. Regarding your aunt and your mother, write down what you know, for that is part of a history and physical for the docs. But their experiences, whatever they were, do not have to be yours.
Welcome to the board, it is great.
Shirley

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in reply to: RAI or Surgery #1063438

Hi and welcome to the bulletin board,
Since you have been reading some of the prior posts, I hope one thought has been very clear to you as you make your decision.
It is YOUR personal decision. Almost everyone is happy with the treatment they had, if they have been a part of the decision.

YOU are busy! I think there is another poster who has a family with similar aged kids, seems like it mamabear. She’ll probably write when she has a chance.

So here’s my story. You’ll hear from others, with their choices. I chose surgery, and for me, that is what I really did want. One reason is that it seems more definitive, and I could get regulated faster, and get my life back. For me, both RAI and ADT’s carried the possibility of returning to the hellish hyper state. For me, I did not want to take either of the ADT’s long term. Having said that, there are several people on the board, including some of the facilitators, who are very happy with their choice of ADT’s. I wanted to move along as fast as possible. I had a six month old when I had the surgery.
All worked very well for me. The recovery was easy (I think there are some good posts on the post op period that you can probably find if you use the Search mode.) I did not have any hyper feelings after the surgery, then I remained euthyroid for the next 30+ years, neither hyper or hypo. Then my TSH was up toward the hypo range, and I felt tired and sluggish, so I began Synthroid. I felt better in a week, have labs checked now and then. My Synthroid has been changed over the years, but I have felt great, with one exception, when it was reduced too low, because TSH was suppressed. I was sluggish, clearly my labs did not reflect how i felt, so it was increased slightly, so now I feel great.

For the thyroidectomy, I talked to two surgeons who do thyroidectomies on a regular basis, just as I shopped around for a breast cancer surgeon when i had mastectomies. At the recent conference, a speaker who is a thyroid surgeon, said to ask how many he/she does a year. Ten is too few. Near 50 or more is what to look for.

Best wishes to you in making your lists of pros and cons! Keep writing!
Shirley

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in reply to: Pregnancy post RAI #1063457

HI Jen,
Until you hear from people who can speak to this subject with much more knowledge and experience than i have had, (which is zero, for I elected to have a thyroidectomy, I encourage you to use the search engine, put in ‘RAI and pregnancy." I recall extensive discussions on this topic.
YOu are certainly well informed, and thinking clearly. I think there is no reason to worry about radiation impacting your ovaries. As you have probably learned, there is a short time after the RAI when precautions need to be taken, but it is a short time. After that, it is a non-issue.
I am guessing you will hear from others, plus the facilitators, that it is pretty darn important to get the right dose of thyroid hormone, so you are not hyper or hypo when you get pregnant.
Welcome to this board, it is absolutely wonderful.
Shirley

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in reply to: Loss of peripheral vision with GD/TED? #1063995

I have had TED for two years, been followed by a neuro-ophthamologist all that time. The visual fields are always done by machine, not the wiggly finger type. That’s not accurate enough when dealing with TED. My experience is below. I did have optic neuropathy, and I did have to have an emergent OD during the active phase to save my vision in my left eye.

Agree with Blessing that you should definitely be followed by neuro/opth. The big thing to worry about with TED and changing visual fields, is pressure on the optic nerve, ie., optic neuropathy. Along with careful exams, one of the early signs of optic neuropathy is not being able to see the color RED as vividly as you normally would. this is one of the many routine tests.
My experience-going to the neuro/opth
As I already stated, if there is pressure on the optic nerve, that is a problem which should be identified, addressed, probably with an orbital decompression, or possible a course of prednisone to reduce the inflammation in the orbit of the eye, thus reducing pressure on the optic nerve. This is a serious problem, for can result in blindness if not diagnosed and managed.
From my view, I did not really NOTICE that I had decreased visual fields (a "dark spot" when I looked left with my left eye)
because I think I was compensating for it a little bit. But the machine visual field exams showed decreasing vision in the left eye. Also, I did not see the color red as bright as it should have been, and as I saw it with the right eye.

During my whole experience with TED, I have not had an orbital MRI, so I can’t speak to that.
Sounds you need to lose the eye doc you have seen once. My eye doc who prescribed new glasses for three years did not recognize any of the signs of TED, and I had’em all! Find a neuro/opthamologist. Ask your endo for a referral to one. Check the color red test yourself. If you find that the red in your left eye is not as bright as the other eye, you should be seen by some eye doc who is familiar with TED.
I am worried that you need to be seen quickly, to clarify what is going on with your eyes.
Shirley

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in reply to: How to Choose / Tapazole/Thyroidectomy/RAI #1063568

I forgot one word in my last post.
Under thyroidectomy, I intended to say, "you CAN have Graves’ and not have TED." I forgot the "can."
shirley

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in reply to: How to Choose / Tapazole/Thyroidectomy/RAI #1063567

Hi Rebecca, and John..
I hope this helps you with your decisions, and answers some questions. Everything I have written below is from my own experience, plus what I have learned along the way.

Rebecca’s question-
"Can I ask, what are the possible implications of surgery for TED? A friend of my mum’s had surgery and had to take steroids as she had serious eye complications. She was a very petite woman and she looked horrific, she trebled in size and was very very ill. I read on here that someone said they’d have to pinned down and forced to take steroids again, they felt that strongly about it. So that bit is scaring me."

The fact that your friend’s mom had surgery, with subsequent steroids and eye complications, are totally unrelated.
TED is an autoimmune disease, situation. IT happens when antibodies are made by our bodies. In the case of TED, they specifically decided to attack the muscles of the eye. When this happens, some of the muscles enlarge, and loose their elasticity. They are not able to "stretch," or expand, which is their purpose when we look any direction. In this situation, there is also increase of orbital fat in the orbit of the eye. It gets really crowded in the orbit. The orbit basically a hole in our skull designed to hold the eye, the six muscles of the eye, some nerves.

Problems when it gets crowded. They happen in various degrees, and for some lucky people, they don’t happen at all.
1. Eyes bulge. More of the cornea (white part) is exposed.
2. The eyelids don’t "fit" as well. Eye is bulging. Eyelids red.
3. Tear composition changes, doesn’t do as good a job as keeping the eyes moist. On many people, the tears "spill out" which happens when the eye is really dry. So tear drops are important.
4. Double vision. If the lower (inferior) muscles are affected, it hurts to look straight ahead, or up, double vision results.
If upper (superior) muscles are affect, people have double vision when they look down, try to read.

Orbital Decompression-done for two reasons. An orbital decompression, removes the extra orbital fat which has developed, plus altering the size of the orbit, by various procedures to create more space for the eye.
Reason #1- If the optic nerve is compressed by all that crowding, there is danger of losing vision. This is evaluated by visual fields checked, plus color recognition. If the color red becomes less vivid, or if you begin to have "blind spots" in your visual fields, either noticed by yourself or by the visual fields test, it is very important to have the orbital decompression to save vision, regardless if the hot phase or the cold phase.
Reason #2- Not healthy for the eye to bulge way out, more risk to the cornea, plus greatly alters appearance of a person. Valid reason for it. When all the damage has been done to the eye, not changin, it is the time to consult about having an orbital decompression (OD) These surgeries are frequently followed by strabismus surgeries (eye muscle) to correct the double vision. After that, eye lid surgery to have the eyelids fit the eye better.

Thyroidectomy
No relationship between having a thyroidectomy and eye changes. None. You have Graves’ and not have TED. A small per cent of people CAN have TED without having Graves.

I had a thyroidectomy >30 yrs ago,TED over 40 years later.

Prednisone
Steroids are sometimes given in the hot, or inflammatory, stage of TED. Some docs prefer IV over oral.
There is a place for steroids, but they have side effects, and for short term use only.
I DID have oral steroids. They helped my double vision and excessive tearing immensely; it relieved pressure on my optic nerve, kept it safe until I had an OD. Steroids reduced the symptoms, but they comeback again when discontinued.
Having said that, I hate hate the way steroids made me feel, all jumpy, super hungry, with a big round face and some weight gain. ALL of this goes away, as the steroids are tapered, then stopped. They are a wonderful drug for certain situations, such as an acute asthsma attack, when someone cannot breath.

Choosing between ADT’s, surgery and RAI, is generally your decision. I do think if I already had TED, I would probably rule out RAI, but that is how I feel.
For me, surgery was definitive, I recovered fast.
For John-Since my incision was done over 30 years ago, it is a little longer than incisions of today. Regarding appearance, I cannot find it, and when I tried to show it to people at the recent Graves’ conference which I attended, nobody else could find it either. It’s my thought that you can not worry about that much. When you talk to a surgeon, perhaps they have some photos they can show you. Regarding parathyroids, there are four parathyroid glands on the thyroid. The incidence of damage to a parathyroid is rare. But we need only one of them to function perfectly normally.
The best guide for choosing a surgeon to talk to is to ask how many thyroidectomies they do a year. 50 is a good number.
Plus, asking any instance of complications have happened over their years of operating.

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in reply to: Hyperthyroidism: natural supplements or RI? #1063538

Hi, I am someone who has had hyperthyroidism, a thyroidectomy and now TED>
I am at the Graves conference right now. Ski and Kimberly are here, too. Not sure how you got the nodules confirmed, or if you have the lab tests, TSH, T3, T4, or if you know those values. The best place to begin is a good endocrinologist who is familiar with Graves’, or hyperthyroidism. If you do have Graves’, there are not any alternative meds, and I say this literally and figuratively, not just in reference to naturopathic meds, that should be prescribed.

Be sure to get copies of your labs from the endocrinologist. If you are hyper, the first step your endocrinologist should do, I think, is to take a lot of time to explain Graves’ to you. The general course is to take an anti thyroid drug, carefully monitered by the endocrinologist, plus labs. There are three ways to go with hyperthyroidism: continue with the ATD, RAI or surgery. I would expect your endo to take some time to explain all of this to you. On this site, we talk about our experiences with Graves’, and we have learned a lot with our experiences with doctors.
In answer to your question, Grave’s is a disease. If you have it, you will always have it. Other drugs are not an option for getting rid of it.
Everyone on this site has had one of those treatments,and it is a personal choice. I think reading some of the good information on the home page of this site is a good idea.

The nodules are a separate subject. They are not that uncommon, most of them are benign and not a problem. But that needs to be decided by a surgeon who will first do an ultrasound scan, possibly some other tests, to better learn about the nodules.
If they see anything that worries them, they might do a very small fine needle biopsy of that node.
Do write again. I am sure you will hear from many others on this site.
Shirley

L

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in reply to: How to Choose / Tapazole/Thyroidectomy/RAI #1063562

John, I am a regular poster on the board. Currently I am at the conference with about two minutes. In the meantime, go to the search engine and insert those words. Really, all of them are viable options, and it is entirely A PERSONAL CHOICE.
Some of us would never consider ATD’s. Some do not RAI . Some do not want surgery. I chose surgery, loved my choice.
People on this board will probably say the same thing about what they chose.
But do begin to read prior posts, you will learn a lot and get a lot of reassurance.
Shirley

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in reply to: Good endo in Oklahoma City area #1063574

I can never remember the sites, but the facilitators mention a couple ones that I think have been very helpful to others on this forum.
I could not agree with you more about seeing a different endo. I cannot IMAGINE a physician talking to me that way!! What a jerk. He/she should be giving you a balanced view of the three choices: ADT’s, thyroidectomy or RAI.
I am on a train on my way to the Grave’s conference right now, and won’t be back in Seattle until Monday.
If you are interested in a couple names, I will ask my wonderful endo for his thoughts. Send a personal message re this.
Shirley

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in reply to: EYELID SURGERY-your experience #1063591

Thank you, Jen.
What part of the country do you live? I am in Seattle. My insurance does give me the opportunity to go to several surgeons. I went to three before I had my OD, which was during the active phase, for I began to have optic neuropathy and was losing my vision. Each doc had a totally different approach to the OD. Absolutely different surgeries. I imagine the same thing will be true of eyelid surgery.
and…did you have eyelid surgery? If so, I would love to hear about your post op recovery period.
Shirley

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in reply to: Newbie to the Forums #1063579

You will LOVE this site! Everyone here is in different stages of Graves’ or TED (thyroid eye disease.) It is so reassuring to hear from others who are having this hellish experience, and very encouraging to look back to where they were, and see that there is HOPE and promise to feeling like a human being again.
I think it would be helpful for you to read some of the recent posts, to begin to get acquainted with the people and where they are in this fun disease process.
Also helpful to write some more about yourself, that is when kindred souls start writing back. Where are you with your Graves’
Did you have eye involvement too? Look forward to hearing from you again.
At this moment, I am on a train from LA to San Diego to attend the national Graves’ conference. You might be interested in reading all the information that is on the home page, also.
welcome,
Shirley

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in reply to: Diet Support #1063714

Just note from my experience. Hyper is hell. Hypo can be terrible! When I ended up being hypo b/c my Synthroid was reduced too much, I was pathologically cold, just as bad as being a furnace when I was hyper, but more than that, I wanted to go to bed, stay in bed, and my entire GI system went on strike. But it is easier to adjust meds for hypo than it is hyper!
Shirley

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in reply to: is this fact true? #1063599

I think the labs tell the story, confirm diagnosis, plus our crazy symptoms. I asked a couple endos here, they routinely don’t do scans.
shirley

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in reply to: One month post op –checking in #1063614

Hi Ruby, it is so nice to hear from you! I was equally happy with my thyroidectomy.

I second lch11’s question about taking Synthroid sub-lingual (under the tongue. Would you check with your endo about this when you see/talk with him/her again? Did he/she have an explanation for this?
Synthroid is metabolized in the small intestine, specifically the duodenmum, jejunum and ileum. It would be a good thing for you to discuss with endo. Surely the labs and Synthroid would be affected by this. It seems that you would be getting much less available drug. I have not heard of this method,either.
Shirley

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