[elf]

in reply to: How important is TSI level for decompression? #1073398

They never did this test in Canada, even when it was done in the States. TPO test and uptake scan, yes. I don’t think they are ahead of USA, they now appear ahead because they have been behind.

Ski – this perception of having TSI in check before ANY eye surgery prevails on other Graves boards. I will have to see if I can find any article about this connection.

[elf]

in reply to: Having Surgery in two weeks, and am nervous!! #1073419

It’s interesting how different these post-RAI recommendations are. My doctors never said that I had to stay away from my house after RAI. They were just stressing to stay min 6 feet away from my kids, use different utensils, flush twice. I still decided to spend 2 days away from my kids, 11 months and 2.5 years old then.

[elf]

in reply to: Hereditary? #1073460

hyperm wrote:p.s I have read many people say that RAI doesn’t cause infertility yet my endo ruled that out when I said I wanted more children why is that????

mx

People have cildren after RAI, at least two of them have posted here.

On the other hand, it’s been a custom among doctors to err on the side of caution with younger people. I would say it’s more of "just in case" reasoning than any hard medical evidence.

[elf]

in reply to: Hereditary? #1073459

No matter how I try to rake my memory, I can’t think of anyone with thyroid problems in my family. Doesn’t mean that someone who I don’t know, didn’t have something. My grandma had typical Graves behavior though all she had proven clinically was blood pressure.

I had kids before my diagnosis, so it’s a huge question for me, will/won’t they have troubles? At least I can alert them of the possibility, and try to make sure they understand how important it is to steer clear of stress in their lives (stress the catalyst of Graves).

[elf]

in reply to: Orbital Decompression Surgery #1074415

Hi Shelby (Ebonyeyz28)

All these years that passed since the start of GD have had some aging effect on us, so even if we do get our eyes back in place, we are going have to be 5 years older (or however long it’s been for a person since TED started) than what we used to look like on the pictures 5 years ago.

But having your eyes looking normal (not bug-looking) is worth it, don’t you think?

I do understand your longing for all the things feminine – makeup, earrings, anything that attracts attention to your face – we have missed it for all these years.

Good luck with your surgeries in March! I’m still waiting to hear when my surgeries are scheduled.

[elf]

in reply to: new to Graves’ #1073783

Some people try to keep their thyroid and "heal" it, so they prefer medications, regardless of what their doctors say. They hope to achieve remission in 18 months or so.

For some people, the sooner they take the thyroid out (with RAI or TT), the less chances of developing thyroid eye disease (bug eyes).

RAI is definitely a cheaper option than the surgery. With RAI, you take a pill and walk out of the room. No expensive Dr’s or surgeon’s time.

I don’t know how much would RAI or TT cost, but if you need surgeries for your eyes (to push them back or to adjust lids), each surgery is around $10,000 – 20,000.

Since she already has Graves, the private health insurance would already be high. I feel for you.

[elf]

in reply to: Not Feeling Myself #1073623

Okay. First thing first. The tests you are interested in are called Free T3 (FT3) and Free T4 (FT4). They have different ranges in different areas (in different labs), so if you say my FT3 is 6.5, nobody will have a clue unless ranges are provided. (Do not provide your tests here, as the moderators don’t approve. There are other Graves’ sites where people actually can post their tests and get comments and advise on them. Send me a message and I will let you know which sites.)

Generally, having these FT3 and FT4 within ranges is thought to be the cure for all your emotional and mental problems, so there will be no need for psychotic drugs. Some people have sensitivity even to ranges, so they stay closer to the lower end or closer to the higher end of the range, it is all achieved by trying and seeing. You are absolitely right, it’s like re-starting it all over again, one thing at a time.

Secondly, the emotions. I am reticent to actually write down my own actions when I had Graves rages pre-RAI, they were that bad. Just know that you are not alone. I had RAI 3 years ago.

However, it’s not quite normal to keep having these emotional and mental things post-RAI and on Synthroid. Again, knowing your labs is very important, and working with Synthroid levels is very important to get yourself into those ranges.

On top of your free Ts, there are tests yet that measures antibodies – those guys that attacked our thyroid to start with. Without your thyroid, they still can get agitated from time to time, and it’s hard to understand. They can affect your eyes way past RAI. In people who are trying to achieve remission on ATDs and save their thyroid, these antibodies tests are like a fine-tune tool to let them know if they are in real remission. These tests are called TSI (Thyroid Stimulating Immunoglobulin) and TRab (Thyroid receptor antibodies). There is a TPO test yet (Thyroid PerOxidase) that will show if you have Hashimotos rather than Graves.

That’s a lot of info to digest, I’ll leave it at this for now. Do send me a message so I can direct you to websites where people discuss tests.

[elf]

in reply to: Not Feeling Myself #1073621

melischa wrote: Thing is I was feeling okay and then all of a sudden my labs changed. I don’t quite understand that part of it. Why does all of a sudden the labs change?

Because if you just measure TSH, it can lag behind by 6 months up to a year. That’s why people here and on all other boards tell to be testing free Ts as they will show your current state more reliably. Some doctors stick ONLY by TSH and we, the patients, need to educate them (or just plain demand the rest of the tests taken). This lagging behind accounts for your feeling hyper way before your TSH showed hyper.

melischa wrote: I have another question though, now I had RAI would I still have a thyroid or just lost the actual hormone that it produces? Would I feel better if I got the actual gland totally removed or is it still there? I only had RAI due to the fact that I wanted to get pregnant so… and the condition worsened after I had Mackenzie. I even went to a post-partum physciatrist which in fact she told me the symptoms I’m feeling and the questions I answered from her perspective was not post-partum but was my thyroid.

Again, you may as well have been either hyper or hypo (and you TSH alone was not showing), either one can be responsible for the emotional liability.

RAI kills the gland, that’s the intention. (Even though sometimes it survives a dose of radioactive iodine and people have a second and even third dose). To supply your body with thyroid hormone, you take Synthroid.

On another note, you can’t imagine the joy when I read your post, that you did have a baby after RAI. I see a lot of questions about that ("How having RAI will affect my ability to have children?") – but not many personal accounts. Thank you for that!

[elf]

in reply to: Uptake Scan Today, RAI Tomorow #1073700

I was given 10 mci, too, and it was enough for me. I stayed off med for 5 months after RAI (didn’t need anything, my tests were eurothyroid), and turned hypo in the 5th month. My uptake was around 60%.

[elf]

in reply to: To do RAI or not to do RAI…can I hear from those who have? #1073832

"I have heard from several people who have had their thyroid out that they would NEVER do it again and to do everything you can to save it, mostly because of how hard it has been to get the correct dosage of thyroid, so many visits to the endo, lifelong meds, etc. "

I had RAI, and what I notice all the time is struggle of people determined to keep their thyroid and never feeling well even if their tests are all within limits. How do you help a person who has all her freeTs, antibodies tests and TSH normal yet her hair falls out, she can’t eat, has terrible anxiety?

I went hypo 5 months after RAI (was eurothyroid for 5 months so wasn’t taking anything), I never noticed that hypo stage, nothing like you hear sometimes of "hypo crash". Started taking 100mcg of Synthroid and was taking it for 2.5 years. Just recently lowered to 88mcg. That’s all!!

I was afraid of lifelong threat of my thyroid ruling my life. Having to watch medication, diet, herbs, vitamin ingredients, tests much more often that once every 6 months or once a year with Synthroid. Never sure how long your remission would last, if you ever get to that stage. It was just too much for me.

[elf]

in reply to: 3rd time diagnosis #1073777

Hi Sandra,

I’m one of those who is feeling pretty good after having done RAI. Would I do it again? The answer is yes.

There are many horror RAI stories statistically, because people with bad RAI experience search for an outlet like Internet, while those like me don’t need to.

I didn’t have Graves as bad as the previous poster had, yet it was annoying enough (trembling, anxiety) for all 3 months between my diagnosis and RAI. I was taking PTU and my levels were regulated, but I didn’t feel myself anyway. I had RAI in Dec. 2005, and am feeling well since.

I didn’t have any problems neither with the procedure itself, nor with turning hypo 5 months after. My goiter disappeared, no trembling, no anxiety, no "Graves rages".

I was 41 when I had RAI and I had two babies on my hands. I just did not feel that I could undertake an almost full-time job of watching my diet and herbs and pills and religiously taking lab tests… My babies/toddlers and my rural life demanded me in full swing.

I did have eye development in my first year after RAI, they were gritty and teary, and moving forward. By the end of that year they settled. I do have proptosis. But I do not want to blame RAI on my TED. As far as I read different Graves forums, TED has a tendency to appear at the least expected moment, even many years into remission. This way, I’m gone through the TED cycle, they are settled, I have nothing to fear anymore ” title=”Smile” />)) I am going to have a surgery to put them back a bit, to look better.

As for waiting for possible cure… RAI has been around for 40-50 years, it’s been plenty of time to find the cure… I’m very skeptical that the cure will be found in our lifetime.

[elf]

in reply to: How to help my family to understand me.. #1073899

Oh yes, those mood swings are the part and parcels of Graves. Ugly, irrational things.

I liked this advise here on this board: when right in the moment, scream: "I KNOW I AM HURTING YOU AND I AM SORRY I STILL LOVE YOU I NEED SOME TIME BY MYSELF!"

[elf]

in reply to: Life Situations, Emotions, and Graves’ Disease #1073876

Yes, my Graves "exploded" after a stressfull event, on the background of my increasing irrational behavior/rages that were self-feeding stresses.

I read that onset of schizophrenia also is linked to stress. I read that any auto-immune disease are all have onset of stresses. The body breaks where it has the weakest link.

So basically – stress is no good, period !! It can cause any disease in any part of your body.

[elf]

in reply to: blepharotomy #1074283

I did TSH test every 6 months, but slipped last year and went the whole year not testing. This January my test showed hyper (TSH < 0.01, FT4 closer to the upper range) so my synthroid was decreased to 88 mcg.

Many thyroid patients on boards like this one stress how important it is to test Ft3 and FT4 in addition to TSH, and many doctors dont’ realize that. TSH levels may be lagging behind.

The orbital decompression surgery is for protruding eyes.

These are pictures of what’s done during orbital decompression:

http://www.envisagebayarea.com/thyroid-eye-disease-orbital-reconstruction-graves-san-jose-los-altos-ca.htm

– but remember they don’t break any bones as may seem from these pictures. They get in between the eyeball and the side wallthrough a small incision in the laugh line.

To see how a young man with severe TED was recovering after his orbital decompression over 4 months, go to YouTube.com and search for Pat’s Orbital Decompression Surgery – Part II . He had severe TED and was much improved.

If it’s mild TED then people dont’ need such drastic measures, they just do lid surgeries. I don’t have severe TED, I’d say it’s moderate.

If your eyes sting and burn then a thyroid eye doctor will never ever offer any surgery on you – yet. I hope your ophtalmologist would know or refer to a thyroid eye specialist, or maybe you can find and apply directly.

When my eyes stung and were gritty in the year after RAI, I used eye gel(or ointment, it’s a small tube that you squish out like toothpaste) that was prescribed for my husband (you can’t buy it over the counter). My husband was in a fire, burned his face, and they prescribed this eye ointment for his eyes – he didn’t need it after all, and I found it extremely soothing for my eyes, as opposite to OTC eye drops that burned my eyes. I wish I could remember what it’s called! If maybe you could ask doctors what they prescribe for burned eyes, if a person actually burned his/her eyes in a fire. The next time I see my GP I will ask her of the name.

My best, Kathy

[elf]

in reply to: blepharotomy #1074281

Kathy, I searched for "blepharotomy" and it seems to be a pure cosmetical procedure. It comes up on plastic surgeons’ websites who do it mostly for aesthetic purposes. No wonder I haven’t been familiar with this term all through my research about Thyroid Eye Disease (TED). Surgeries for TED are called Orbital Deconstruction (you don’t seem to need it as you don’t have bad protrusion) and lid correction.

Your saying "They said they would take the fatty pockets out from either side of the nose, turn the corners of my eyes up some, lower eyelids slightly and do something to the tendon I do not remember." could be a plastic surgeon speaking, but could be a thyroid eye specialist, too. You need to make sure who is it you are talking to.

A thyroid eye specialist will send you to a CT scan of your eyes to determne how bad your protrusion is. He won’t care as much about wrinkles, but about how to make your lids have normal size, not shrinked so you have a stare effect.

My eyes have been feeling OK for 2 years, and I am going to be having an orbital decompression surgery, setting the eyes back into their sockets. I would never have gone under the knife if my eyes were still not feeling quite right. They have to be settled, and you are saying that they have been not quite right for the last 6 months?

Are you checking your thyroid levels? (TSH, FT3 and FT4). If they are out of normal ranges, that could be impacting your eyes, too.

My best,.

[Author]

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