[snelsen]

#1064055

Hi. I am glad that you will be discussing this issue with your endo in the near future. This is a situation where other people’s experiences cannot help you very much. Because of your allergies, ATD’s are not one of the choices for you for treatment. That seems to have been concluded by your endo and you. As you know, that leaves RAI and surgery. At your future appointment, ask the endo the same question. I am not sure where you are with your labs, or how you feel. Both those factors, plus the goal of resolving this issue so that you do not remain in a hyperthyroid state, should be discussed with your endo. I sure appreciate your dilemma. Do write with an update. I imagine you already have these questions, but here are some suggest for questions to have written down when you see your doc. Another idea is to take a friend to take notes. Another REALLLY good idea, in my opinion, is to sign a Medical Release of Information form (ask for it at the front desk,) and check that you want copies of the dictated reports of your doctor visits, plus the labs. Then you can review the treatment plan at your leisure.
1. Am I hyper now? What do my labs say now?
2. Assuming my labs are acceptable, and I am not dangerously hyper, is it important to have surgery in the very near future for this reason?
3. In my situation, are there compelling reasons to have one choice over the other? (RAI, surgery>)
4. What IS my present status? How do we proceed from here? Is it possible to do one of these treatments even if my thyroid levels are not controlled, since we know that my allergy to ATD’s is not an choice to me to decrease thyroid levels?
Look forward to hearing from you soon after your appt.
Shirley

[Jules]

#1018330

Ok so I’m allergic to both meds and I am only on beta blockers and loratab. How long can I be on just these meds? What’s happening with the thyroid levels. I asume that the thyroid is just running amuck. Waitng on insurance to change hopefully a few more days but then what.? I am discussing surgery vs rai with endo.but really need to know how long I can be off the meds before treatment.?

[Jules]

#1064056

Thank you for your thoughts on this. I know for a fact by the symptoms, I am very hyper since being removed from the meds on 08/29. All of the symptoms are back. so your questions are valid. I am wondering since I do not see the endo until my insurance gets changed over, Oct 1st if any one knows how long you can go with out the ATD’s and be just on the atavan and the Metoprolol 50mg twice a day. I feels like the Metoprolol stops working about 1.5 hours before it is time to take the next one.

I really hate that I am having to experiance this again. The ATD was taking my levels to a more controlable hyper state. I am scared of the RAI and the Endo want me to have that over the surgery because of the complications that come with surgery. Just frustrating.

[snelsen]

#1064057

hi, glad to hear from you so soon. Have not read your other post yet. Couple suggestions. If the beta blockers are not quite holding you long enuf (ie, heart rate goes up a lot) if you have not already done it, tell the endo, ask if there is a possibility to increase the dose or frequency a little bit. Re the Loratab, I do not know why you are taking it. It is the same as Vicodan, which is tylenol and hydrocodone. Do you know why you are taking it? Maybe that is a med you can simply stop if you like.
Usually given for post op pain, so not sure why you are on it.
Insurance? Can’t do anything about that. Oct 1 will roll around fast. Thyroid? It could be running amok. YOu know how you feel, plus a new set of labs (did you have them today) will tell you. But what is really relevant, I guess will be labs before your surgery, simply for information for the doc.
Choice of treatment? There are tons of good posts about choosing between RAI and surgery. I chose surgery in a heartbeat.
Simply because I did not want RAI, and the time period to mess around with getting regulated seemed potentially longer with RAI than surgery. I would think it would be even longer, in your case, because you have a lot of thyroid on board going into this thing. But that is just what I think makes sense. Total personal choice. Many on this site chose RAI and are happy with that choice.
I know you just had an appointment today, so not sure how much conversation happened. Did you say you prefer exploring surgery? Did you ask for one or two docs who routinely perform thyroidectomies? any surgery has risks, as you know.
I think it matters a whole lot that you choose what you want, not what a doc is pushing or decides you should have. Unless you can get valid, concrete reasons for his choice. Then you still have a right to explore the other option.
The worst thing you can do is choose an option you have reservations about. That is not a good place to be! Going to read your other post now.
shirley

[Jules]

#1064058

Shirley – No blood work since the ER then the WBC was out the roof. I will not see the endo for at least another 2weeks or so. OOOPS on the meds that was for the sore throat – I am an ativan and the Beta Blockerfor the shacks and wanting to jump out of my skin. Sorry today is a bad day for me to thinking I am having a bad brain fog day if you know what I mean.

[Harpy]

#1064059

Sorry to hear you have allergies to the ATD’s
As for other treatments, I think they used to use iodide to control thyroid hormone production, it does not change the state of the GD but blocks thyroid production and reduces your hormone blood levels, I think it was potassium iodide I read about, isn’t used as long term treatment because it does nothing to improve the disease state.
Talk to your doctor, you may need to use something like this to reduce your levels before Surgery or RAI, I think they normally prefer to get hormone levels down before either of those two treatments.
Others who have taken either of these two treatment paths may be able to clarify this.

[Bobbi]

#1064060

Taking iodine may not be a good idea — talk to your doctor first and foremost. Iodine is necessary for the production of thyroid hormone, so taking extra iodine has been known to be like throwing gasoline on flames. It is also given sometimes to saturate the thyroid prior to surgery. Perhaps this is the form Harpy is talking about but I do not know. The bottom line is that we here do not really know what is safe for you.

I did RAI. The studies, over decades, have demonstrated that it is safe in terms of the amount of radiation we are exposed to. What is involved is that you swallow a pill, or sometimes a small amount of clear liquid. In a few days, your throat becomes sore (caused by damage to thyroid cells). It’s kind of an "external" sore throat: it isn’t sore to swallow, but you feel soreness. Some folks require some pain meds for it; I did not. (And I’m not particularly stoic.) Then, about one week — give or take — after RAI, we become somewhat more hyper than normal. Thyroid cells not only make hormone, but they store it for future use. So when our thyroid cells are damaged by the RAI, they release their stored supplies. This extra hyperness lasts a few days to a week or so. That’s it.

There are pros and cons to all of the treatments, but what you need to understand is that being hyperthyroid is far and away more toxic to your body than any of our treatment options. I know that it is very, very difficult right now, being so hyper, but try to keep an objective mind when you are talking with your doctor about treatment options. Shirley’s suggestion of taking someone with you is a very good idea, because when we are hyper, we dont’ have the concentration needed to remember all the points, and a well person, sitting with you, will likely remember things you do not.

I do hope you get things squared away, and soon. And, a word of advice: you might check with your doctor about how much a visit would cost you. It could be that you can pay the extra, so that you do not have to wait until the insurance changes. Just a thought.

Wishing you well.

[snelsen]

#1064061

As you think about what way you want to go, if you want to read the thought processes of others who have made the decision, I think if you put "surgery" and RAI in the search box above, you will see various views. There are some very good recent discussions. And it all boils down to what feels ‘right" for you. There are no answers. For some people, they simply know that they do not want to do RAI. They don’t even want to investigate it. And the very same thing can be said for surgery. In both cases, we want skilled docs who have had a lot of experience. And that does include RAI, for that is dose related, based on several calculations.

Sorry, I was thinking that the insurance thing referred only to future surgery or RAI. But right now you are not covered by anything, waiting for it to kick in? Including doc appts? I get it-finally!
Re iodine that Harpy mentioned He just mentioned it in passing. I agree c Bobbi, that is definitely a discussion, and probably not an alternative, for you to discuss c your doc when you have your appointment.
It is very very hard to be hyper! It is also not healthy for you. But you know all that, and believe that this does have progress and an end point, and you will feel NORMAL again! Yes!
Shirley

[Harpy]

#1064062

Just to clarify
My comment on Potassium Iodide, was not just a passing comment, I intended it as something that Jules may have a look at, as it may be something she will need to understand the use and effects of in relation to her future treatment and being informed means she will be in the position to have a meaningful discussion with her doctors.
It was the preferred method of treatment for Hyperthyroidism prior to the advent of ATD’s, RAI & improvements in surgical procedures and is still used in a lot of cases prior to both Surgery or RAI and sometimes after RAI to protect from the Hormone dump from the Thyroid. If anyone is considering Surgery or RAI because they are allergic to ATD’s then it is wise to brief yourself so that you can actively engage in discussion with your doctors about your treatment, and how the process will take place and what to expect, this discussion will help you to make a judgement to some degree if the doctor you are talking to is going to be appropriate for you or if you need to look further.
I am not suggesting that Jules, or anyone for that matter, embark on a course of self medication and did suggest that she talk her doctors about the Potassium Iodide.

[Kimberly]

#1064063

Jules wrote: I am scared of the RAI and the Endo want me to have that over the surgery because of the complications that come with surgery. Just frustrating.

Hello – I would specifically ask your doctor what complications that he/she is referring to, as *all* of the treatment options come with pros and cons. With surgery, there is a risk of damage to the and parathyroid glands and the nerves around the vocal cords. These risks can be minimized with a highly experienced surgeon, but you can’t completely *eliminate* the risk.

Also, any surgery while we are hypER is considered risky. As Bobbi and Harpy mentioned, iodine can be used as a temporary solution to "flood" they thyroid gland and temporarily stop production of extra thyroid hormone. However, my understanding is that this is a temporary, not a permanent solution to keeping our hypERthyroidism under control.

Not trying to push you in one direction or another…but since this is a permanent decision, I would definitely go in with a full understanding of the pros and cons behind both surgery and RAI.

[snelsen]

#1064064

For my own understanding, isn’t it also risky to have RAI when hyper?

[Kimberly]

#1064065

Hi Shirley – I’ve actually heard conflicting opinions on this one. It is common for docs to “pre-treat” patients with ATDs prior to RAI in order to get their baseline levels of thyroid hormone down. The theory is that lowering this “baseline” level reduces the risk of damage from severe hypER spikes and/or thyroid storm following RAI.

However, I have heard other opinions that starting and then stopping the ATDs within just a few weeks can itself cause the patient’s thyroid hormone levels to increase. The docs in this camp believe that the risk of thyroid storm is small enough that “pre-treatment” should be reserved for patients with heart issues or other complications.

Add this to the list of things that the docs can’t seem to agree on. ” title=”Wink” /> So it’s definitely important for patients to do our own research and be our own advocates not only in terms of *choosing* a treatment option, but also in terms of how it is carried out.

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