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in reply to: Maximum amount of time you can be on meds? #1181755

Sounds like you are in Canada or Europe!
But the ATD is pretty much the same, I understand.

Since you have been on Carbizamole for 2+ years, I imagine you have been having labs. If you don’t already know, ask if they have done additional labs in addition to your thyroid labs, usually a liver function lab and a CBC, which includes a WBC (white blood cell) count. As Ellen said, ask your endo to discuss this more with you. Ask her if there are any recent papers and studies taking a look at being on ATD’s longer that two years or so.

In answer to your question about people being on ATDs permanently, I am sure there are no studies or evidence about this, for it is only in recent times, that a few people have been on ATD’s for several years. Kimberly, our facilitator, will probably address this. i think one other person has been on ATD’s a long time, a former facilitator. But it is not common.

And I am guessing she (your doc) might be used to Graves’ patients being on ATD’s, then moving on to RAI or TT. That is the usual process. Generally, as you have probably learned, ATDs are used to get us safe, and not hyperthyroid, and then RAI and TT are considered the permanent treatments. And there are pros and cons to each one, as Elllen mentioned. But of course, whatever you end up doing, you need to be well informed on all of this.

I know I have said the same thing several different ways, but to summarize the standard of care has not been to regard ATD’s as a permanent treatment.
As you may know (and should ask if you don’t) there CAN BE some serious side effects from ATD’s. They tend to occur more at the beginning of taking them. But that is probably one of the main reasons that ATD’s are not considered a long term therapy.

If you are not familiar with all your labs, I suggest getting and keeping copies of recent ones, and dictated summary some of your visits. Medicine is changing rapidly, and many patients can not retrieve all this information online.

If you feel strongly about this, continue to ask for it, see how it goes, and if a doctor will follow you closely with labs. I think each person on ATD’s a longer time, and there are not that many of them yet, realizes that at some point in their lives, they may need to reconsider this, if they become hyper, or if the med side effects causes other medical problems
Shirley

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in reply to: Decision to make btw ATD and TT #1181679

Hi Shakira,
Well, there was a bit of a kerfluffle about our Thanksgiving. ONE of the family members (the difficult one) decided we’d go to the Four Seasons for a meal rather than cooking it. The rest of us thought it was a bad idea, we wanted all the familiar chaos of cooking in the kitchen at home. So we went, and all were disappointed except one of us! “Nuff said!

I wish you would/could go into permanent remission, too. Or even a couple decades would be nice!
Just wanna say that “life after surgery” was just fine for me. Of course recovering from the surgery is not much at all, so I am supposing you are referring to getting thyroid hormone to the “sweet spot” or the right does for you. IF you had a TT, when would it be?

I’d say that 3 months is long enuf to find the right dose. But some people just begin with enough. It is good to begin with a low enough dose, and wait at least 6 weeks for labs, so you really know where you are.

You have a couple months to see if you remain in a stable state on ATD’s that is good.

Realize, when you see an endo, each has their own biases and opinions, other than YOU, sometimes, about what treatment they recommend. If they are more familiar with RAI, they may emphasize that. If there are good surgeons in your geographic area, there is no reason not to chose TT. I would do that again and again. Just not an RAI person. But, as you know, many on the forum chose that.

Sounds like you have the choice of continuing on ATD’s and if you feel good, and labs are good, I say go for it. If you get hyper again, that probably means ATD not for you. I think everyone, including Kimberly, who has been ATD’ing for several years, said that if she becomes a full hyper person again, she’ll select one of the more permanent options.

I agree 1000% about travel. I have done a fair amount, wish I’d done more when I was in my 40s and 50s-especially the really strenuous trips.
BUT I had teenagers then, and not an option until I was in 50’s.

Places I loved Galapagos, Ireland, Turkey, England, France, all national parks in US. To name a few…..and the best for me.
Shirley

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in reply to: Radiation Treatment #1181751

From my own experience with double vision (I could not look left, right or straight ahead, only straight down at the floor) the only thing that will help you with this, is strabismus surgery. Of ALL the surgical procedures I have had with TED, the strabismus surgery was the very very very best! And easy.
My surgeons and neuro ophthalmologists wanted nothing to do with radiation, did not prescribe it for anything, and felt negative about it. I can’t give you any reasons. But in any case, it was never suggested for double vision.

Of ALL the terrible things about TED for me, the diplopia (double vision) was the most stressful. I felt bonkers with it, and not safe, and I could not look at people. I had to speak to them while looking straight down at my shoes! I had immediate relief, and had mono vision after that surgery. I DO now have prisms ground into each of my lens of my glasses, simply because I can see better. But have not had any more issues with double vision.

Write back if you have questions.
Shirley

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in reply to: Is Graves as a response instead of a disease? #1180928

Debbie, that is one wonderful and amazing post, crammed full of reliable and useful information with the resources listed.
I suggest you begin a new topic, titled “Marvelous references for anyone with Graves’. Or something like that!
Shirley

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in reply to: Decision to make btw ATD and TT #1181695

YOur last question.
ENT surgeons would not be interested in discussing Graves, and questions about antibodies, etc. They talk surgery, that is it.

Glad Kimberly addressed your question about antibodies.
That test DOES take longer than the other labs.

Yes, your labs are a bit puzzling. Dunno.

I had the same experience about some co-workers grumbling when I was sick or had doctor appts. I was surprised, since we all took care of sick people!!!!

It is late. Think I will turn on my heated electric mattress pad (just got it this year, I LOVE it!) and get ready for bed.

YOUR Thanksgiving is some other time but I cannot recall if it before our after ours, which is in a couple of days.

So nice to get to know you, even though our common bond of Graves’ is something neither of us expected or wanted, that is for darn sure.
Shirley

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in reply to: Decision to make btw ATD and TT #1181689

It’s the TSH that needs to be corrected to safe level.
TSI and TraB tests are done to confirm a diagnosis of Graves’-or maybe Hashimoto’s, if there is any doubt. Some insurance companies won’t pay for them, some will. TSI/TRaB tests are not used for treatment.
Kimberly can answer this subject with more knowledge than I have.

Re parathyroids. The goal is to leave all four parathyroid glands. The surgeon will be very careful to do that.

Yep, there is a union at the hospital where I worked. I have retired now. The union was a union for nurses.

You have come a long way in getting control of all of this, and one day, it will not loom as the elephant in the room that rules every waking moment, and you will feel much, much better.
Shirley

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in reply to: Decision to make btw ATD and TT #1181687

I suspect this is a case of semantics. I was referring to the ADA Federal act, the Americans with Disability Act. The same disability that veterans apply for, and permanently disabled people.

I am guessing, but do not know, that short term disability is referred to as a medical leave where I worked.

Shakira, are you referring to your place of employment? Sounds that way.

I had plenty of “sick leave” accumulated, so I used that, for one episode of illness. Another time, I got MLOP, which is our term, I think for Medical Leave Without Pay (keeping all benefits intact.) Then it was getting the form from HR, having the doc fill it out, handing it to my supervisor and HR,and it was granted.

Is this what is happening?

I have a friend, an RN, who just had a kidney transplant. She has an approved medical leave, which can be extended if determined by the docs. But is not the kind of disability where she has a placard to hang on her rear view mirror.

So I need to be straightened out!

From my personal experience with a TT, I wish I had taken three weeks off, gone back part time for part of the next time, before full time.
I got a lot more tired than I expected to be, a lot longer than I expected to have fatigue.

Preop, I had one pre op visit, short, before the surgery with the surgeon, and a brief physical was required, but I had had so many brief physical, there was one within 30 days which they used.
Shirley

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in reply to: Does TTX qualify for Short-Term Disability? #1181712

LaurelM and DIY both had recent TT’s. Read their posts.
Shirley

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in reply to: Decision to make btw ATD and TT #1181684

Hi, so glad you went to the internist. So you know, an endocrinologist is an internist who has decided to take an extra two of training in endocrinology.
The same thing for endocrinology, allergy and some more I am not thinking of.
Here’s a brief description of the training.
http://medicine.unm.edu/endocrinology/fellowship/index.html

As you have experienced, sometimes we have to find the right “fit” for our docs, and doing active listening and “hearing” as well as knowledge. Internal medicine doc definitely study endocrinology, and rotate through that service several times during their internal med residency. I do know that we see endo a lot on the forum. I also know a lot of internists, and also family med doc can manage Graves’ later on, when all this treatment stuff has settled down.

Super glad you went to her. I am sure that the sec’y did not read the report correctly. And her fund of knowledge may have been none at all. She works in a surgeon’s office! Glad you provided more information. I understand the dilemma, and surgeons, and most specialties, want the paperwork first to be sure the appointment is appropriate for them and for you.

A general surgeon, who “does” TT’s, is very common also. I had a general surgeon.

Here’s a suggestion. Call the office and ask them to call you if they have a new patient appointment cancellation. (First appointments are scheduled for a much time than following appts. Believe me, with the holidays coming, three sets of them, I am very impressed they had a slot for you in January!
Time will go fast.

Re short term disability. It is my personal opinion that you have no chance of getting it. I went back to work full time 2 weeks after the surgery. It was a dumb thing to do, and I should have gone part time for a few days. But you could probably take a MOL (medical leave of absence) if you don’t have sick time accrued. Each thing requires paperwork from the doctors office, and their opinion. In my case, I had a baby, and it was great to have other people take him, and generally have people bring some meals, do the laundry, that first week.

As Alexis said, she chronicled her TT. And someone recently just had one, and has written extensively about it, before and after. I think you will find both VERY reassuring. I think I recall who it was, but after i post this , I will write back with her name.
Glad progress is being made!
Shirley

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in reply to: Levothyroxine side effects? #1181657

Hi Katie,
I am wondering if you need to wake up at 2am for you medication.
It is true that we should wait to take supplements (if we take them) for at least 4 hours after our thyroid med.
But the general directions for eating breakfast, is 1/2 hour after taking the medication.
I suggest you review this with a good pharmacist, be sure to tell that person what you are doing now. And your doc. Don’t be surprised if the information differs a bit. It could.

Of course, there a zillion references on how/when eat after taking it. I think the most important thing is to be consistent. Do the same thing all the time.

I copied this from medscape and drugs.com. This is what I do. I am sure that other people wait longer, and some other variation. Again, aside from not taking supplements for 4 hours, which should be done, the other issues, whether to eat 1/2 hour or 1 hour after the med is taken, consistency is the main thing to do.
Here’s what I copied, and this is what I do.

“Synthroid works best if you take it on an empty stomach, within 30 minutes before breakfast. Follow your doctor’s dosing instructions and try to take the medicine at the same time each day.”

Re juicing. I had heard of it, but really did not know what it was in real life.
I assumed it is getting all you sustenance and nutrition by putting food in a blender, or some kind of a juicer. Apparently that is pretty much what it is.
It doesn’t ring my bell at all, I enjoy chewing, I enjoy crunchy things. The downside is that you do not get any fiber. Which we really need.
I guess I have a bias against it, for when I have worked in hospitals, and people have HAD to be on a liquid diet for a while because of surgery, they HATED it. The day they were able to eat a regular diet was a very happy day for them.
I think if it is important to you, and you are careful to have all your juices provide what we need from fruits, vegetables, carbohydrates and protein, and you add fiber, it should probably not make a difference in your blood sugars. If you would like to have this information, I suggest buying the equipment to test you blood several times a day, and/or when you have the weak, light headed and other symptoms you described. And, your boyfriend’s idea was very good. If your blood sugar is really so low that you have symptoms, drink some juice, or have some chocolate. You should feel better pretty fast. Faster with juice. But sorry, you did not ask about that.

The other posts, saying stay on the same thyroid med, contains very good advice. I also take Synthroid, cause it is the most reliable regarding the contents. Again, consistency, is the key. Which did not happen to you when the generics were changed. And there is really no way for you or us to know if they are or are not equivalent.
How did the appointment go???
Shirey

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in reply to: Is ATD a temporary method to treat Graves? #1181664

Hi shakira,
Your observations are correct. But here is some more information for you to confirm and discuss with your endo appointment next week.
The following is intended to answer your concerns, and provide a bit of history, too.

When we have our diagnosis of Graves’, we are pretty darn sick, the reason being the crazy amount of thyroid hormone that we are producing.

1. So the FIRST STEP is to get us SAFE by taking an ANTI thyroid hormone, to decrease the overproduction of it. Think of our body in really dangerous overdrive. And the ATD is the way to do that. There are three goals for doing ATD first, the most major one, getting us to a safer place. beginning with ATD.

2. The second is, regardless of what choice we end up doing, ATD, RAI or considering continuing on ATD, is that with RAI and TT, it would be dangerous to move forward right away with either of them. With the thyroid gland in abnormal state, for RAI it would be more difficult to determine the dose. Plus,
the reason for #1. It is more dangerous to proceed with RAI or TT on a person who is very sick, with fast heart rate, higher blood pressure, weight loss,frequently psychologically unstable, feeling crazy, (cause of Graves’) and really not in very good shape to make or agree to much of any decision, before the hormone is decreased. And, to have a TT, it is safer and recommended to decrease the size and vascularity of the thyroid gland itself, which can be done by beginning ATD’s, and following up with some potassium iodide drops (decrease side of gland) before the surgery. No thyroid surgeon-or ANY surgeon, for any reason!) would elect to do any operations on a patient with tachycardia (a very fast heart rate) and high BP. So goal is to get us safe, and feeling better. Many on this post reflect back on how crazy, argumentative and even hostile they felt when very hyper. NOt a great time to make a decision.

Some history, to respond to your question re ATD’s. THey have been around a long time. THe standard of care for ATD’s has been to do what I have mentioned above, THEN proceed to one of the other two options. The historic reason not to continue with ATD’s is that they have some side effects that are worrisome, primarily decreased WBC, significant allergic reactions, and incidents of liver involvement. These can all be watched by labs, but they are definitely risks. So the medical profession regarded them as significant risks, considering ATD’s a temporary treatment. And, before RAI was developed, and a way to establish doses, and before ultrasounds were developed (early 1960’s) and CT (cat scans) were developed (1971!!) there was simply a lot less information about Graves’.
Nuclear medicine was first identified in 1931, when E.O Lawrence invented the cyclotron
” Then, the birth of nuclear medicine can be dated to the discovery of artificial radioactivity in 1934 by E. O. Lawrence.1″ Reference is http://users.phys.psu.edu/~irina/papers_and_pres/Nuclear%20Medicine.pdf

This is a VERY LONG WAY of saying that back in the 1950’s there was one choice. Thyroidectomies. There was not enough information to keep people on ATD’s, for thought to be too much of a risk, and RAI was not a standard of care at that time. The thinking then was to do a PARTIAL thyroidectomy, leaving a LITTLE bit of tissue, thinking it would produced much less, and in may cases, the right amount of thyroid hormone, so a person would NOT have to take thyroid replacement for a long time. Now, the thinking has changed to remove the entire gland, and treat with Synthroid (been around for a very long time_ so you and the doc know where you are withe the dosage, and do not have the added variable of not knowing just how much the gland is producing. In summary, easier to manage for the docs. In my experience, I was euthyroid (just fine) for about 30 years, before beginning to need thyroid hormone supplement. And it coincided with getting older, and especially with women, they do not have graves’. but do need to become a bit hyPOthryoid, in their 40’s or 50’s, and end up taking thyroid replacement anyway.

In answer to your question,

shakira7 wrote:

If this is not a permanent treatment, then why are doctors even suggesting this method in the first place?

The short answer is to keep you safe.

In answer to your question

shakira7 wrote:

Wouldn’t it make sense that everyone diagnosed with Graves, are given the 2 options from the start – RAI or TTX?

The short answer is it is bad medical practice and dangerous for you to do either RAI or TT when we are hyperthyroid.

REgarding ATD’s the thinking is changed a little bit recently. And you can find plenty of end’s who do NOT agree with this, and don’t do it. Right now, the science is in flux, with no evidenced based long term studies of outcomes. So now there ARE people who have stayed on ATD’s, Kimberly, our facilitator, is one, and Jake, who had Graves a log time ago, has achieved a remission after his longer use of ATD’s. But there are more people who don’t and people who stay on ATD’s who become hyperthyroid again, will need to decided between RAI and surgery.

Incidentally, with both RAI and surgery, you DO need to take thyroid replacement the rest of your life. From what I understand about RAI, they make their best guess (calculation) about how much to give, based on size of gland, and some other tests. Sometimes it is not enough, and people on this board have become hyper again, and have to need another round of RAi.

I’m sure Kimberly and others will chime in to amend or correct what I have said, hope so.
Shirley

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in reply to: Recs for endos in Houston, TX? #1181635

I understand why you are asking. Referrals, especially from “one of us” are always wonderful. It means a lot more than a list of docs. As well all know, endos and surgeons, and all docs vary as much as we do.
Not that this is a sure thing, either, but I suggesting asking your present endo. especially if he really might happen to know one who
“does” Graves. Or perhaps he had a patient who moved there, and might be willing to share the name of the doc they chose. And, he/she might at least know someone from a meeting who is familiar with Graves’, and does more than diabetes! Having said that, meetings and conferences are just that. No more. And the docs who attend them, usually have no idea what kind of docs their colleagues are. I was married to a physician for quite a while, I can assure you this is the case.
It is a crap shoot, that is for sure. Maybe you’ll get lucky! Offhand,I do not recall any Graves’ docs at the conferences but I have attended only two. Kimberly might have a thought on that.
Shirley

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in reply to: How Did Everyone know there was something Critically wrong with their health? #1181120

Hi Allie,
I’m thinking the cataracts are a separate issue. No relationship to Graves’. But from the ages of 50 they become more common. The surgical procedure is easy, you can have one done and go out to lunch the same day! REally. No pain. Re the eye doc, if he/she is familiar with Graves’they will know what tests to do. A lot of it is history, and examining your eyes. If TED continues to get worse, then there are more tests to do for that reason, but if you have mild tests, they would be normal, anyway. I am specifically thinking of visual fields and other associated tests with colors.

My TED now? All these years later? A royal pain for me. I am photophobic, always have to have sunglasses even in SEattle, and always have a visor with me (glare) One eye does not close at all when I sleep, and I tape it closed at night. Eyes are usually dry and itchy. I have eye drops with me all the time.
I am a rare and severe TED person, though.

Hearing? No knowledge of it and Graves’. Cataracts and hearing loss tend to begin to “present” as we age (:
Shirley

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in reply to: thyroidectomy is my only option for another baby? #1181604

See you docs, as you plan to to do!

You are MUCH better off not reading stuff on the internet, unless, as Kimberly suggested,the site she recommended, and/or an academic institution. I would stay off it before and after you see the doc tomorrow. Ask HIM/HER for references, or follow the suggestions listed here.

There is much on the internet, that is AIMED at worried and vulnerable people seeking information.
Shirley

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in reply to: thyroidectomy is my only option for another baby? #1181602

Few things to think about.

1. TT really is the “fastest way” to move forward with a plan to conceive. It is most likely a mistake for Jake to say that you’d be hypo a week after the surgery, so I disagree with that,and a good surgeon or endocrinologist can give you some statistics on that. After TT, you do labs, see you you feel, begin thyroid replacement, and see how it goes. But as Alexis said, RAI takes a much, much longer time before you can even begin to think about conceiving.The difference between TT and RAI when planning to be pregnant, is that it takes a much, much longer time with RAI to get to where your thyroid is stable..so you CAN begin treatment with ATD’s, and move on with your life and conceiving.
BUT you have ruled out TT, so that is that. It is your choice, and you do have them. But diet, exercise and acupuncture, or anything else you have thought of, does not replace the three options for treatment of Graves’/

2. So, your plan to see the fertility doc tomorrow, and the endocrinologist a few days after that, is a very good plan.

Each of the posts you have received, including mine, are no substitute for the consultations you will have with your docs. IT is a good idea to explore this carefully, ending up meeting your goal of having a decision you can live with, and that you made for yourself with the help of knowledge. I realize a lot of the pressure here, is your own, cause you want to move ahead with IVF,and get that 2nd baby! Very easy to understand, and I wish you the best. Do write again.
Shirley

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