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in reply to: sinus infection #1175698

Hi Claire, I really don’t know the answer to the hypo/sinus infection, but there are other factors that contribute to this, despite the fact you have been well for a long time. The first think I think of, which your doc may have already considered, is that the antibiotic he prescribed, is not specific for the bug you have. The second, is that your sinus infection could be viral, in which case, no antibiotic will make a bit of difference.
Be sure he knows you are having fevers, what they are, and time of day. If you are febrile, I am sure you feel crappy. And sinus infections are very draining on us. Keep your doc (and us!) posted on how you are doing.
Being hypo is very draining, also, as you know!
Shirley

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in reply to: hypo after RAI #1175679

Wow!! that is quite a radical lab change in three days. But your symptoms sure reflect hyPO. It will take more days than you want it to take to really evaluate how you feel. But I am thinking you are more than ready for Synthroid! You may already know this, but try to take it first thing in the morning, and if you take supplements, be sure it is at least 4 hours later (calcium, vitamins,etc.) They can interfere with the metabolism of Synthroid.
It is so frustrating. Feeling hyper is terrible. Speaking from my own experience, I hated feeling hyPO so much, that I longed to feel a bit hyper again!
HOpe you notice improvement soon. It may take a while to get the right amount of Synthroid.
Shirley

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in reply to: Remission #1175660

goodfriendjen wrote:

Caro, you wrote: Without a thyroid you will no longer experience the hyperthyroid problems if all of the thyroid tissue is removed.

Does anyone know what the chances are that they won’t remove it all? Even if there is a little tiny bit left around the parathyroids/vocal cords, will that wreak havoc on my levels?

Hi Jen, PREVIOUSLY, it was the practice to removed most of the thyroid gland, and leave a little piece of it, on the premise that the smaller gland would produce the right amount of thyroxin, or almost the right amount, but not much chance of being hyper. This was done for a long time. The plan was that after the sub total thyroidectomy, that you would be euthyroid (just right, needing no replacement.)
This is what I had, and all was great, with no thyroid replacement, for about 30 years. When I reached menopause, I became tired, sluggish, and was hyPO, and since then I have taken Synthroid.
The amount of thyroid to leave, is just an educated guess. When they began RAI, it was kind of the same thing.

Then, the thinking changed completely, and the goal now is to completely destroy the thyroid (or remove it) because the thinking is that managing the thyroid supplement would be easier, for you would not have to try to balance it with the amount of thyroid hormone the person was producing on his/her own. THe docs feel it is easier to manage with no thyroid hormone production by us. However, I really liked that I was euthyroid for over 30 years.

My own thought is, that it is easy to manage either way. You go by the labs and how you feel. But the current thinking is that it is easier to know that we are not producing any thyroid hormone, and that is fine .
Shirley

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in reply to: Well, I’m getting hyper again… #1175675

Amy!!!
I am hoping you are back on methimazole now, do you know your labs yet?
I have been out of town. Please call again, I will check PM’s but right now, don’t have your phone #.
I hope you do not cancel your trip. Sure, you want to feel your best, but no matter how you feel, you will be with a good friend, in delightful weather.
Also, did your endo give you a beta blocker for your heart rate if it gets really fast? I am thinking and hoping that you are back on your ATD, and by tomorrow, you will feel it, know you are headed in the right direction.Shirley

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in reply to: An Introduction #1175625

Hi, well, it is easy to understand why the acronyms associated with Graves’ are not part of your DNA!!! And better yet, there is no test!
TT=total thyroidectomy
PTU=propylthiouracil, on of the two ATD’s (anti thyroid drugs.) in the U.S.
MMI=methimazole, the other ATD (in the U.S.)
TED=thyroid eye disease. This happens to some people who have Graves’. TED ranges from mild eye symptoms, red eyes, scratchy eyes, dry eyes, light sensitive, to more life changing symptoms, like double vision. It can happen any time, even decades later.

These are the three that you will see all the time.
Occasionally, you might see ATD, for anti thyroid drug (like Synthroid.)

Welcome to this crazy world. On thing that is reassuring is that most of the people on this board are in some phase of Graves’ the diagnosis, management of symptoms, and treatment. When they get stablized, and life is back to normal, or their new normal, they don’t write on the board anymore or check it very often.
Shirley

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in reply to: Remission #1175643

Hi Jen,
As you know, the whole purpose of ATD is to keep us safe from being hyper, and achieving a euthyroid state, both by labs and how we feel.
I sure understand why you are perplexed about what to do, and which doc to use as guidance.
It is my understanding that remission is what occurs with no treatment at all, that is you would need to be off ATD’s, see what happens. Of course, that takes time, and if you become hyper again, you’d be in the same situation of needing to be treated with ATD’s.

Just a comment. Surgeons are really good at what they do, but their training is not in endocrinology, and surgeons, unlike endos, are pretty much in our lives very short term, before surgery, and after, only for post op visit related to the surgical healing. After about 4-6 weeks, you don’t see them anymore.
So I would be surprised if they have any real experience with antibodies one way or the other.

And, please ask the endo the relevance of your antibody levels. I think they are an indicator, but that is all, of your chances of remission. Kimberly wrote about that in this thread.

As you probably know, and check with your endo if you are unsure, the TSH, and T3 and or T4, plus your symptoms are the guidelines for treatment of Graves’.

I wonder if you have the time to consult with another endo for 2nd opinion.

I wonder if you would find it helpful to talk with with a pediatric endocrinologist. They are the docs who would consult with your endo after your delivery, and I think, but do not know for sure, that a neonatal, perinatologist, or peds endo, might be the doc to consult with YOUR endo during your pregnancy.

I sure wish you luck with your decision. It is even more frustrating when you consult with different doctors, and get conflicting information. Some of this happens because there are no finite answers. Some other times, there may be sincere difference of opinions, and then there is the real fact that some docs know more than others. This is a tough one because of the time element, your age your desire to start a family, and having Graves’.
Shirley

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in reply to: Remission #1175641

Hi Naisly,
It was my understanding that Jen cannot take PTU because of the allergic reaction she said she had to PTU. Perhaps I misunderstood. Sounds like she was switched from PTU to MMI because of this. She can tell us. Jen, were our on PTU first?

This is what she said:

“I forgot to mention, I was allergic (lost major amount of hair) to PTU, the only drug you should be on while PTU/in first trimester.”

Shirley

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in reply to: An Introduction #1175621

Regarding nausea and the antithyroid drug, I’d ask the endo or the pharmacist, probably the endo. You know, the one without a sense of humor!? Maybe a divided dose would help you with the nausea?

Holy moly, seven years of steroids! I hate that drug. And I thought I was suffering cause I had it a month plus the taper. But the dose was high, 60mgm/day, for optic neuropathy, related to thyroid eye disease.

I sure hear you, about being sick and tired of being sick and tired!

It’s tough to be told you have Graves’ when you don’t seem to have the truckload of symptoms that come with being hyper. That makes it a double whammy.

Re weight, it is my understanding, that all females, Graves’ or no graves, tend to pick up some pounds after menopause. Whatever that is worth.

Welcome to the boards. You will have so many new friends on this forum.
Shirley

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in reply to: Remission #1175638

Hmmm. I am really reflecting your own thoughts about this issue, and wanting to plan a family. And moving forward with a TT is the fastest way to get to your goal of pregnancy.

Since time is a factor, it seems to be a pretty big gamble to hope you go into remission. Also, remission is generally not permanent, simply by the definition of the word, and by the relative small number of people who do attain a state of remission.
You may have read from the people on the forum who were planning a pregnancy, and their decisions.
The fact that you cannot take PTU (in the event you are hyperthyroid when pregnant) is another variable that you need to consider. Being hyper is dangerous for you and baby.

You are from an area with good surgeons who have experience with TT’s, that is for sure.
If you decide to have one, there are excellent posts about pre-op,post-0p experiences, and several from people who stayed on the forum to say that they were pregnant, and how long it was after TT. It is good to get regulated on thyroid hormone replacement, so you are in a healthy place for pregnancy.
Shirley

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in reply to: RAI and cancer risk #1175322

No, I don’t. Radiology and nuclear medicine are very lucrative specialties, I do know that. I think it is what they learned in med school and residencies, what was “done” wherever they were, plus personal preferences and relationships,
plus ease of referrals. I would like to think an endo would be very candid if there were no major surgical facilities in the area, and tell us that. Also, it is tough for patients to travel to far away places. I know, for I have tried this a couple of time, but always had the fallback choice of having my eye surgeries in the area where I live. And I do regret some of my eye surgery choices.
But loved my TT choice.
Shirley

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in reply to: Results after Total Thryroidectomy #1174829

You will be fine!!!!!! Read the other posts here, you will learn a lot!
Shirley in Seattle
TT

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in reply to: Results after Total Thryroidectomy #1174826

Well, the definition of goiter is that it is an enlarged thyroid gland, usually due to abnormal production of thyroid hormone, either under or over production. It is also enlarged, with a significantly increase in size, in countries and people who do not have iodine, or sufficient iodine, in their diet.
When was first diagnosed with Graves’ my thyroid gland was enlarged. There are all degrees of enlargement. Before I had my TT, I (and this is part of the pre-op preparation) took KCL (potassium iodide) drops, the goal is to reduce the size and vascularity of the gland before the surgery. All went well.

As has been said in this forum many times, it is great that we have three choices. I think your thought about TT and recovering faster, getting back to baseline sooner, is probably true. There is more a time lapse after RAI.
Good luck in your decision making!
Shirley

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in reply to: RAI and cancer risk #1175316

Hi Amy, my mom had esophogeal cancer, too. Maybe genetic, but I suspect her smoking history was relevant.
In my own experience, looking back, I am glad I had a TT for the reasons you are concerned about. You never know what is ahead! Many years later, I had a very aggressive breast cancer, in both breasts, at different times. Lots of radiation. High doses. Although I realize they are doing a much better job doing targeted radiation, I still am reassured that I did not have RAI in the same general location.
For what is worth.
Shirley

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in reply to: New results…doc couldn’t say it was high or low #1175300

Hi, my post is to reinforce Caro’s and Kimberly’s posts.
As has been said, each lab has their own range, and they do vary a little bit.
The machines for that particular lab are calibrated to that machine. So, the major point, that CAro made, is that you should look on your lab results. MOST lab results have the result, the the range is in ( ) parentheses.
IF your own lab is formatted this way, then you know the state range they are using. NOW AND THEN, for some dumb reason, someone will configure the results without the ranges, which, as I said, is dumb and silly. IF this is the case on your labs, I suggest calling whomever you think has the right computer access, and ask them to print your labs results with the ranges listed. Generally, it is a matter of clicking a different key.

And, as was mentioned, I don’t think you realize that your decision to double your methimazole is a pretty big step. Better that way. AND, I know it seems impossible, but in my experience, hyPO is terrible. Just as hypERTHYOID IS TERRIBLE. If you pitch yourself into hyPOthyroid state, you are in for a different world of hurt.
Best to you, try to get an earlier appointment, or short of that, TRY to get a return call. I know that is difficult, cause you never know when they will call, or if they will call. But it has to be the doc, cause probably anyone else who returns the call, cannot make any medical decisions.
Shirley

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in reply to: Back from Cleveland Clinic #1175236

Glad you had a good experience, and like the endo! I suggest that if you find yourself feeling really different, either increasing symptoms of hyPER or new symptoms of hyPO, that you check that out with the endo, and possibly getting an earlier lab for that reason.
And, something very important, is that the “blood problems” are something that should be kept track of by labs, but a different lab than thyroid labs.
The CBC measures the white blood cells, red blood cells and some other stuff.

Although you are happy with your endo, I am surprised that he did not tell you some of the symptoms that you should know about, regarding the blood problems. The serious problems are very rare, but you should know what to watch for. Basically, if you get sick, and do not get better, it can mean that your white blood cells are being impacted by the ATD. This is called agranulocytosis.

But, as you know, we are all patients here, and most of us have been instructed about this by their endo, and/or read about it. It’s not alarming, but something you should be aware of. It is part of understanding all about the drug you are taking.

Here is a small conversation about it which I copied and pasted from the Cleveland Clinic, plus the website so you can read it yourself. I suggest that you call the office, and ask someone to return your call, asking what you should know, and if you should have AT LEAST (recommended) a baseline lab test of CBC (means cell blood count.)
Here they are:
This is one paragraph, followed by the website:
Minor side effects of antithyroid drugs include skin reactions, arthralgias, gastrointestinal effects, and sialadenitis. The most serious side effect is agranulocytosis, which has been reported to occur in 0.3% to 0.6% of cases. A baseline complete blood count is recommended, but further follow-up with differential white cell count in asymptomatic patients is not recommend. All patients should be instructed about this risk and told to stop the drug if signs of infection develop and seek urgent medical care. Other rare side effects include hepatotoxicty, vasculitis, cholestasis, hypoglycemia, and hives.

The site:
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/hypothyroidism-and-hyperthyroidism/

The above paragraph is quite a ways down under Graves’ Disease, then treatment.

Also, it is partly semantics, but the ATD (tapezole) you are taking is an ANTI thyroid drug, and it gets us to a safe place, by blocking the crazy thyroid hormone production which makes us hyper. So it is the first step. But it probably is not correct to say that the drug gets you into remission. It gets you safer, so the three options of treatment, RAI, surgery and ATD’s can be considered. GEnerally, in the past, ATD’s were thought to have a limited time to be given, then one of the other two choices should be regarded as a treatment. Recently, in the past 5-10 years, several people, Kimberly, one of the faciltators, have chosen to continue on ATD’s. So she will probably write about that.
REMISSION happens now and then, but it means when you are NOT on ATD’s for Graves, and you still feel good, your labs are good, and it’s ALL good. But most people do not have a remission, and if they do, Graves’ can come back.

Hope this is not too much information, but you were wondering about side effects of your meds and related issues. You can also go to the pharmacist where you got tapezole, and ask them about side effects, and the ones you should be concerned about.
Welcome to the club, you will find a lot of help and a lot of friends here.
Shirley

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