[Ski]

#1075046

I think you’re making the right decision for YOU, which is absolutely critical. The fact is that no matter what you choose right now, it will be a while before you really start to feel a whole lot better. Bottom line, you can decide on something else if ATDs do not provide you the relief you need. The fact is that you won’t be able to see whether you’ve gone into remission for a year or two, but you will spend those years at normal thyroid hormone levels, if your doctor treats you correctly. If you are unable to maintain any kind of normal levels on ATDs, time to make another decision, but it’s all about what makes YOU comfortable. Good luck!!

[James]

#1075047

Diane94 wrote:Anyway, he confirmed that it was Graves, nothing that I didn’t expect since he had already said he thought it was but he thinks my best option was RAI. That scares me and the thought of doing something permanent before even trying just medication when there could be a small chance that it could work with just medication I think is worth the try. He said that he didn’t think it was going to work for me but was willing to let me try, however he did say that it may take up to a year and a half before we know if it really worked and even if it does 5 years from now I may still have to consider RAI. So, I’m starting on methimazole(Tapazole) and will be having my blood checked every month and will be seeing the endocrinologist again in February. . . . . . .

Just for clarification, when you doctor says, “to see if it ATD’s are going to work for me”. It is important to have a clear understanding of what he means when he says that.

Most everyone WILL respond to ATD’s, which is a block in the synthesis of the Thyroid Hormone. There is no question as far as that is concerned. ATD’s WILL block the synthesis of Thyroid hormone in virtually every patient. The goal is to get to that normal sweet spot thyroid level for you (euthyroid state).

The issues that remain are:
1. Can you tolerate the drug (no allergic reactions, side effects etc.) and;
2. Can you ultimately achieve remission with use of ATD’s.;
3. Can you find that sweet spot (normal thyroid levels)

I’m assuming that your doctor is referring to those factors?

Ski has made a good point. As long as you are comfortable with your choice . . . go for it. It is after all a choice and that is medically acceptable option. Only you can decide ultimately what is “right”. The length of time in which you remain on ATD’s will ultimately be your choice as well with your doctor on side of course. I have known people on ATD’s as long as 30+ years. Others for a variety of personal reasons choose to by-pass that option all together. ATD’s were my treatment of choice, but remission realistically can take much longer than just a few months. It can take many months if not years for some people. My choice was largely driven by the fact that I wasn’t prepared to destroy this very underestimated little gland without trying non ablative options first. We all have our reasons . . and whatever they are, we need a doctor that will respect our choices.

Keep us posted on your progress.

Best regards,

James

[Diane94]

#1019923

Well I had my second uptake and scan done last week and saw my endocrinologist for the results. I had one uptake and scan done about two months ago and my 24 hour uptake was 10, the bottom of normal. This time my 24 hour uptake was at 43.6!! My TSH level did go up some, less than .01 to .03, barely enough to even mention. My T3 was 4.3 and my free T4 was at 2.1. My blood pressure was high for me too. Some of it I’m sure was because we had just driven an hour in a snow storm to the doctor’s appointment and I was nervous to hear my results but still when I run low normally than it was 144/82. I have also been feeling my heart racing, one night my resting heart rate was 110, so I know that I need to do something. Anyway, he confirmed that it was Graves, nothing that I didn’t expect since he had already said he thought it was but he thinks my best option was RAI. That scares me and the thought of doing something permanent before even trying just medication when there could be a small chance that it could work with just medication I think is worth the try. He said that he didn’t think it was going to work for me but was willing to let me try, however he did say that it may take up to a year and a half before we know if it really worked and even if it does 5 years from now I may still have to consider RAI. So, I’m starting on methimazole(Tapazole) and will be having my blood checked every month and will be seeing the endocrinologist again in February. Even though I already knew what he was probably going to say I was still disappointed when I left the doctor’s office. I guess it’s hard too because I’m feeling like I’m on the down swing again. I had a few days where I actually felt pretty good, not as tired, not as sore, and actually felt like I had some energy. Different story today. I guess it’s one step forward, four back.
For those of you that have kind of been there done that, am I making the right choice of holding off on RAI? My doctor was honest and said that I shouldn’t expect relief for probably a few months from some of my symptoms and that it will take quite some time before we know if it worked but I just don’t want to fall further behind and jepordize my health anymore. I’m trying to stay positive and be optimistic, however I also need to be realistic. I also have some stressful things going on (my mom has a CAT scan this Thursday to see if she has lung cancer and my brother-in-law started chemo again this past week for his disease. Not cancer but it is one way to try and get it in remission, he has Wegener’s. Most this advanced have already died so we thankful for the fact that for the most he is doing well given the circumstances.) and I know they have said stress is not good but trying to keep it in check.

Let me know what your experiences have been or if I’m making the right choices on waiting to do RAI. I appreaciate any information you can give.

[Bobbi]

#1075048

James made very good points about the ATDs. I would just like to add a comment to emphasize his point. The ATDs do not cause remission. They keep thyroid hormone levels normal (hopefully) until your antibody levels lower sufficiently for you to be able to go off medication and maintain normal thyroid hormone levels for a year or more. Antibody levels rise and fall for no well-understood reason. None of the treatment options we have control antibody levels. They only control thyroid levels.

Bobbi — Online Facilitator

[Diane94]

#1075049

I just want to make sure that I’m understanding you correctly. When I go on the medication it is to see if my body will try and go back to "normal" on it’s own with the help of the medication? If my levels reach a normal level do they then have me go off of the medication to see if my body maintains on it’s own? Now if the medication doesn’t work and another form of treatment is needed (RAI or surgery) then you have to stay on those medications for the rest of your life? This is all so confusing and a lot to absorb!! If my body can’t maintain on it’s own is staying on the Tapazole for the rest of my life and option (that’s if you can tolerate the medication with no side effects) or do you end up having to have RAI or surgery? Who knew that a little gland would cause so many problems! ” title=”Wink” />

[James]

#1075050

Hi Diane,

There seems to be a longstanding debate as to “how long” one should stay on Antithyroid medication, even amongst Doctors. From my experience, I would venture to say most wouldn’t recommend long term use (12-18months), but there are some Doctors out there that WOULD say indefinitely. I will be honest in saying that my bias tends to lean toward the “indefinitely” contingent. If you choose this option as your personal choice, you have to take the “one day at a time approach”, wait and see. The harmful side effects from ATD are rare (but they do exist). The minor side effects usually show up at the higher doses which are initially prescribed, but may go away once a maintenance dose is achieved (at least that was my experience). Others cannot tolerate either one of the ATD options at all and had to discontinue use. Bobbi is right when she says that antibodies “wax and wane” for no well understood reason, so you have to be mindful of that. But environmental triggers should be examined as well. Stress in ones life can definitely have a bearing on how our immune system responds and for obvious reasons is sometimes unavoidable. I have heard of individuals who were enjoying a remission; and then when they were faced with losing their home in a hurricane, they relapsed. I know I have food sensitivities, so diet in my case IS a trigger to autoimmune activity as I have experienced this first hand. I would be most interested in knowing if environmental/dietary triggers were discussed or explored amongst the panel of medical professionals at any of the NGF conferences as this is of great interest to me?

The idea of RAI is to get you to hyPO, in which case you will need to take a T4 equivalent pill for the rest of your life (not a big deal for many people). On the other hand, no one could possibly tell you how long you can or will have to stay on ATD’s, that’s why I come full circle and say, if you are going to choose that option, you must take a “one day at a time” approach. For me it wasn’t such a big deal. I went through a period of being really sick, but in the whole scheme of things, it was only for a season in my life. I now have the knowledge to deal with any relapses I may encounter in the future with some degree of intelligence. I wish I knew then (15 years ago) what I know today.

Wishing you the best!
James

[Ski]

#1075051

No kidding, Diane! I don’t even remember learning much about the thyroid in my human body classes ~ but it sure does make a big noise when things aren’t right!!

The fact is that Graves’ Disease symptoms DO come and go, for reasons no one understands. The ATDs help your body to avoid responding to the antibodies attempting to "trick" your thyroid. I’m really not sure of the chemical activity involved in attaining a remission, but I do know that the statistics indicate that somewhere between 20% and maybe as high as 40% of patients DO end up attaining remission after a period of time on ATDs. The initial goal is to find the ATD dose that maintains a normal thyroid hormone level in your body. Once you find it, you remain on that ATD dose (generally very small by then), for a period of time. When I was going through it, I was told that 18-24 months would be the usual period of time. I believe that now the span of time can be lower (12-18 months), but the idea is to have a long period of stability. After that period of time, you stop taking the ATDs and see if your body remains at normal thyroid hormone levels. If it does not, then you have not attained remission, and you can choose then to either remain on the meds for a longer period of time, or choose one of the other treatment options.

One quick clarification ~ if you do RAI or surgery to remove the thyroid, then the "medications" you must take for the rest of your life are actually thyroid hormone. It does not present the same risks as typical medications, is not processed through the liver and kidneys, and is chemically identical to the thyroid hormone your gland would produce, if it were there.

MOST Graves’ patients will suffer thyroid failure prematurely as a result of the antibody attack, remission or no, FYI, so most of us end up on thyroid hormone replacement at some point.

[James]

#1075052

Just to add one important point to Ski’s thoughtful post.

Synthetic T4, IS indeed comparable to what you thyroid produces naturally.

A healthy thyroid however produces MORE that just T4, there is T3, T2, T1 and Calcitonin (Calcitonin known to participate in calcium and phosphorus metabolism). Although T4 and the conversion from T4 to T3 within the body is MOST critical to our bodies healthy metabolic function (NO argument there). The fact remains that there is more to the Thyroid that meets the eye and is more complicated than most of us give it credit for. If you are interested, a good endocrinologist should be able to assist you with any questions concerning the COMPLETE picture. Every Thyroid patient deserves to have ALL these questions answered to their satisfaction before they make a permanent decision.

James

[Bobbi]

#1075053

While I understand that a healthy thyroid produces more varied types of hormone structures, plus calcitonin, than the replacement hormone provides, the bottom line is not a comparison between a healthy thyroid and the replacement hormone. We no longer have healthy thyroids.

When you have autoimmune Graves disease, your thyroid is permanently diseased, and is capable of killing you unless you can bring it under control. Many patients can use ATDs relatively safely; and in many patients, they can control the levels of thyroid hormone in our blood. But not for all patients. And, there are some significant potential side effect issues with ATDs that may make them less suitable for extremely long-term use. For long term use, there is a legitimate argument that replacement hormone is safer, even in patients who tolerate the ATDs initially well. It is a judgment call. But in no way is going to replacement hormone "inferior" because it does not include calcitonin, etc.

The calcitonin issue comes up from time to time. While calcitonin participates in calcium and phosphorus metabolism the physiological significance of it in humans is questionable. It could very well be a vestige — like the appendix. There are, for example, no known metabolic consequences of either calcitonin deficiency, or excess. Let me be clear: while excessive levels of calcitonin may be a warning sign for certain types of diseases (like medullary thyroid cancer, or renal failure) having too much of it is not known to cause a diseased condition. Ditto too little of it. "Saving" your thyroid, therefore, in order to protect the production of calcitonin in the parafollicular cells may not be a good idea, particularly if your ATDs are giving you side effect issues, or are not controlling your thyroid hormone levels well. Even thyroid cancer patients who (unlike us) have every last bit of thyroid cell destroyed via surgery and RAI, can live well without their thyroids.

Bobbi — NGDF Online Facilitator

[kimmie]

#1075054

Just to add one important point to Ski’s thoughtful post.

Synthetic T4, IS indeed comparable to what you thyroid produces naturally.

A healthy thyroid however produces MORE that just T4, there is T3, T2, T1 and Calcitonin (Calcitonin known to participate in calcium and phosphorus metabolism). Although T4 and the conversion from T4 to T3 within the body is MOST critical to our bodies healthy metabolic function (NO argument there). The fact remains that there is more to the Thyroid that meets the eye and is more complicated than most of us give it credit for. If you are interested, a good endocrinologist should be able to assist you with any questions concerning the COMPLETE picture. Every Thyroid patient deserves to have ALL these questions answered to their satisfaction before they make a permanent decision.

James

James:

Just discovered this board. Interesting questions, good answers. Short version of my thyroid story: Diagnosed 1.5 years ago with thyroid problem (my mother’s been on Synthroid for 15+ years). Originally, my blood tests showed .01 TSH level, normal T3/T4 levels. My doc told me 2 things – she’d never seen normal T3/T4 levels with NO TSH production, and that I had Graves Disease (HYPERthyroid). Eventually sent me to the local endocrinologist, who, after running tests, said I was HYPOthyroid, did that iodine uptake test, told me I needed my thyroid ‘killed’ – which has yet to be done lol. (Bear with me, I’m getting to the info you posted above).

Went to another doc today for a DOT physical, she listened to the history, said I am NOT hypothyroid, but probably have Hashimoto’s Disease. Now, to address the copy of your post above – this doc says synthetic thyroid, such as Synthroid, is not the way to go – no no no. She says synthetic thyroid meds provide only ‘storage’ T4, and that dessicated natural thyroid, such as Armour, provide all of the T4, T3, T2, T1 and Calcitonin you mentioned above.

So, what is your opinion of dessicated natural thyroid products instead of synthetics? If you’ve addressed this subject in previous posts, please forgive me, please.

Thanks,
Kimmie

[Ski]

#1075055

Many people swear by Armour, for the very reasons you state. The problem is that T3 is a powerful form of thyroid hormone, and for some people, a supplement of T3 is too much for them over time, so it is counterproductive in the end. There used to be a question about its ability to provide a consistent dose, but that has been solved with newer technology. It’s certainly worth a try, but make sure you are looking at your symptoms objectively so you can switch if necessary. (There is also a synthetic T3 replacement that can be taken ~ typically people who have trouble converting T4 to T3, or those with liver damage, benefit from T3, but again, it’s very powerful, and patients should be followed closely.)

There have been quite a few posts discussing this topic ~ at least one on this new board, and I believe there were several on the old board as well. A search using the word "Armour" should lead to a mother lode. ” title=”Very Happy” />

[torri33]

#1075056

Wow Diane your post really got people talking. I personally have decided to hold off on the RAI, I just cant see destroying my thyroid function permanently yet. Stress wil definitely make your levels go up. I have been on break from school for about three weeks and my levels have come down. But I know as soon as I go back they will go back up. There is a chance of remission and I am holding out hope for that and giving it to God. I hope everything works out for you. Hang in there.

Torri

[kimmie]

#1075057

Ski –

Thank you so much. I did, indeed do an ‘Armour’ search first, and did read most of (well, spents lotsa time anyway lol) them. Was kinda wondering specifically what people with no, or almost no, TSH, thought about it Armour. Now, I realize that may be a really stupid specific request, as maybe all the people on this site affected by thyroid problems have no-to-low TSH levels? I’ve ordered several books via Amazon.com about the subject, and at this point am so uneducated about it that, for all I know, nobody here has ‘normal’ TSH levels lol. What a wonderful, educational site this is!

Thanks,
Kimmie

[kimmie]

#1075058

Yikes, sorry, I also searched forums for info relating to the following comment (cut and pasted here):

"Armour is generated from pig thyroid tissue, and so is thought by some to contain more of the elements we miss without our thyroid. One thing for certain is that it contains a bit of T3, the active form of the thyroid hormone (which our body typically generates FROM T4, the main component in our replacement), and in some cases that is helpful for patients. In other patients, they experience sensitivity to the T3 over time".

What I tried to search for was the explanation of what KIND of sensitivity some patients experience to the T3 in Armour. Can find mentions of that, but no specifics.

Thanks,
Kimmie

[Bobbi]

#1075059

To answer — or try to answer Kimmie’s question:

A bit of background might help. T4 has a half-life in the body of six and three-quarters DAYS. It is converted to T3 as the body needs it in various organs. The liver is one of them. So there is a T4 "pantry" if you will. We store it for a while, and use it, like canned goods from a pantry.

T3 has a half-life of three-quarters of ONE day. It is the form of thyroid hormone that is used imemdiately in the cell. It is the intense, instant form of thyroid hormone. It is not stored for need, it is used when you take it. It’s like the coke that you drink as soon as you open it: if you leave it out for a few hours, it goes flat.

So, when we take T3 by pill form, giving ourselves a slug of it all at once, we may be introducing too much of it, or introducing it at a time when it isn’t needed, etc. The problem with T3 is a bit like the problem diabetics have with insulin replacement: they take the insulin when they take it, not necessarily when their blood sugar situation requires it. As a result, there is more wear and tear on the body, and the body wears out earlier than normal. Especially with a situation of over-stimulation of the heart, T3 replacement can overstimulate the heart, causing problems.

I took T3 supplementation — a very teensy little bit (half of the smallest dose possible once a day) — for about two years. It started to affect heart function. A friend took T3 supplementation for several more years and was ultimately taken off of it, when heart issues became serious.

So, it is not something to take lightly. Folks who argue for T3 because the thyroid produces a small amount of it, in addition to the T4 it produces have not taken into consideration the huge problem associated with the fact that the thyroid’s production of ANY hormone has controls built into the system and that the thyroid does not produce its T3 only at 7am in the morning (or whenever we are taking the pill).

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