[elisiaann]

#1058979

I was diagnosed with Tyroiditis and Graves’ Disease October 13, 2011. It took over two years to officially diagnose. I had my youngest son in June of 2009 and the symptoms kicked in to overdrive. I was in an unhealthy marriage, which I got out of in December, but things got worse and worse. I was originally diagnosed with postpartum hyperthyroid and was told it would go away in no more than 6 months. I was put on propanolol for my heart, and a high calorie diet for my drastic weight loss, and sent on my way. Around 8 months it seemed like I was getting better and had gained some weight, so I thought I was in the clear. I finally got to stop the beta blocker (which was a blessing because it made me literally not want to get off the couch). Shortly thereafter my heart complications returned. I was forwarded to a cardiologist that ran a few tests and made me where an Event Monitor for two weeks. That dr gave up and forwarded me to a specialist at UAB. He then told me to stay on a beta blocker. After I told him that I couldn’t because of the side effects and having a full time job and two children under 2 at the time…he wrote me off. It took me getting mastitis (rare in non breastfeedig women) and a posotive lymes disease test to be referred to a rheumatologist. He very quickly said I didn’t have lymes but was posotive I needed to see an endocrinologist because he suspect Graves’. I was then sent to Dr. Mu. He ran some test and called me the day of my wedding (while walking out the door to get hitched) to tel me I had Graves’ and needed to start Methimazole immediately. I took it for 2 months (not consitently) and went back with no change. He then upped the dose and told me to take it every 24 hours and not to miss that it was vital. So, I have done so and have been on it without skipping doses for 4 months (but and addition 2 months of hit and miss) and am still not normal! He was positive in my February appt that I would be normal by April, but I can’t seem to hit the mark. After my April appt I was in a rage because of disappointment and Dr.Mu made some contradicting remarks. A few days later he called my mother (not me….a 27 year old woman) to inform her he had pulled my RX records and that I had not had my meds filled. He failed to account for the fact that he called in my RX originally under a diff name and that all my records in his office were now under my new married name. So, that was cleared up BUT….I am just mad. I was never a candidate for PTU because of white blood cell counts. I don’t want the radiation because of children, plans for future pregnancy and I have nodules and prefer to just have it all taken care of in one swoop, but he says I am no longer a candidate for radiation because I am “medically resistant”. Here is where my confusion comes in….
1) He never gave me the option of staying on Methimazole. I have read multiple stories on this site about people treating their Graves’ in this manor, so should I be concerned that I wasn’t given the option?
2) He keeps telling me that my thyroid must be stable/normal to have the surgery, because of fear of seizing on the table. I have not read this anywhere else. Is this common practice?
3) Everyone keeps posting how much better they feel on the Methimazole, but I don’t feel better at all. In fact I felt better when I was just on Cymbalta for the joint and bone pain. I was told to stop taking it in case it interfered with the Methimazole, but now I hut constantly. Nothing helps. Is there anyone else not feeling relief from the Meth?
4) I have always struggled with headaches, but have new things like being “allergic to myself”. I am on to antihistamine blockers because if I don’t take them I break out in horrible welts from head to toe. If I barely touch or scratch myself I have bright red marks for an hour because my epidermis overreacts to the stimulation/histamines. He says it will go away after surgery???? Anyone had this???

So sorry for the length of this, but I am feeling very blindsided right now. Not sure what to think or believe. This has been such a rollercoaster ride. I keep getting my hopes up just to be let down AGAIN. I feel very alone in this since no one around me has felt what I am going through. All I can tell them is that I feel like my body is attacking itself, and it is a never ending battle. My “good” days are far and few now, and I am ready to be me again.

[Bobbi]

#1171317

Hi, and welcome to the board.

It is dangerous to have any type of surgery while hyperthyroid. To operate on the thyroid itself while hyperthyroid is even more dangerous. Yes, your doctor was correct. People who do a surgical removal of their thyroids have to have their levels controlled somehow beforehand, or there is an added risk of major complications.

It is difficult to tell whether you were at all compliant while on the methimazole. You admitted to not taking it consistently at some points in time. That is a huge problem. You won’t feel better on the drug unless you are on the proper dose of it, and it is controlling your thyroid levels properly. And the only way to find the proper dose is to take it exactly the way the doctor prescribes it. You tie your doctor’s hands by taking it some times but not always.

If, however, there was a long period of time when you were on it absolutely the way you were supposed to be then it could well be that you have such raging thyroid problems that the drug isn’t likely to work well.

The fact that you have head to toe allergic welts might be due to the methimazole. Or some other drug you are on. I would definitely suggest that you explore with one of your doctors, the possibility that a drug interaction is causing that particular problem. Methimazole could do it, but so could other drugs, or a combination of drugs you have been prescribed.

[elisiaann]

#1171318

I have been on 20 mg a day (2 pills at 9:00 pm), every day since December 5, 2011. He is talking about increasing my dose in June if he doesn’t see the numbers that he is hoping for. I have seen several posts of people regulating on just 5mg a day, so this is insane to me! My first visit he didn’t explain its importance to me very well (his words, not mine), but ut wouldn’t have made a difference anyway. I just couldn’t remember to take it…brain fog! Now I have a system in place and take it and my antihistimines at the same time. The reaction I have with welts isn’t from the Methimazole…they already ruled that out. It has a technical name that I can’t remember. It is rare, but known with Graves’ (from what my dr says). He says its main trigger was stress, and now I am stuck with it as long as I have a thyroid. Thank you for responding. I am glad someone knew it was required. Like I said, he was the only one I have heard say it.

[snelsen]

#1171319

Hi, glad you found this site.
Think I will jump to your questions first.
1. I am thinking the option of staying on methiamazole was not presented to you because the endo had no reason at all to conclude tha the drug has helped you return to a euthyroid (normal) state. That choice is more of an option when there is solid evidence that this has occurred. In your case, there is no way for the endo or you to have seen this improvement. Probably because the drug was not taken consistently, so neither you or he had any chance at all of determining how it was or wasnt making any difference.

When you began your higher dose, has it made a positive difference in how you feel? Did the endo ask you to check in to report how you were feeling? I can’t tell from your post if you felt much better on the higher dose for four months, or even back to normal, or if you continued to have hyper symptoms or if you began to feel hyPO. So all of this information is critical for you and the doc to work together with. I am not sure if you want this option, but if you are serious, then tell the endo that. And really, if you have skipped doses at all, no doc anywhere can help you toward your goal of feeling good again.

This is a real good tome to wrap your mind around the fact that you will most likely be taking meds and having labs the rest of your life with graves.

Or, as Bobbi said, maybe the drug is not working for you. PTU is the other option and I am not why you have said your comment about WBCells. What do you mean, do you always have a dangerously low WBC? Or is this something you read about? With both ATD’s there is a minimal cause for concern with that, but it is true for both ATD’s, and you have already been on one for four months. Did the endo ask you to come in for labs during the 4 months? Just asking.

From what you say, it seems that you prefer to have the surgical option.
2. It is preferable, and generally pretty easy with ATD’s to reduce the amount of thyroxin and get people back to a better state. Frequently, not always, not at all, the gland may reduce in size. there ARE FOLKS WHO ARE resistant to ATD’s who have thyroidectomies. But you need to be treated appropriately, with this in mind, by the surgeon befor the surgery. As Bobbi mentioned there is more risk, but it can be managed quite well by the meds you take befor the surgery. We ar fellow patients here, so my comments are directed to you so you will meet with a surgeon. I suggest that you ask for a referral to a surgeon who is known for doing a lot of thyroidectomies, and kearn about the preparation, pros and cons of surgery. The preparation consists of taking some drops before surgery to reduce the vascularity, the size of the gland.
I had surgery. The endo you are going to is not the best resource for you to discuss the surgical option. The surgeon is. It sounds like the endo has concerns about you being compliant after the first go around when you weren’t taking the medicine. Now you realize how you really have no choice in this matter.
Final word, which I know you know by now. You Have to take meds, most likely you will take them the rest of your lfe, and thyroid hormone is essential for life

Next thought. Not sure why the doc called your mom. You may have listed her as an emergency contact. When the doc checked to see if you had picked up your meds (probably he was really concerned about you, and more so because you had been non compliant in the past, maybe that is why he called your mom. Being hyperthyroid can kill you if untreated.
3. I suggest you walk in to a pharmacy to ask them if Cymbata really interferes with the metabolism of methiamazole. Who told you? I want to be sure this is correct, for it sounds like it j
Has helped you with your joint pain. And if it is really a contraindications to take theo two drugs together, it is not worth considering the ATD option which you do not seem interested in, and have no way at this point to have any evidence that atds are helping you.
4. Not sure, but as Bobbi says in her very helpful post to you, you may be having an allergic reaction to the ATD.

I’d like to say in a general way, that I am very sorry you have graves. None of us like it and it has been varying times of stress and hell for all of us. But you can get better. With two small ones a full time job and a new marriage, plus graves, this is very hard. It is almost impossible for other people to understand the disease(and you have quite a way to go and a lot to learn). It helps to imagin yourself back before you had ever heard of graves, and realize if your friend had it, you would have no understanding of it either.
Shirley

[elisiaann]

#1171320

I have been on the 20mg a day since the first week of December (without missing any doses) and have not felt a change at all. I have had two appointments since then, one in February and then one April 5th. Both times he has said that my numbers were better, but not normal. He never tells me what my labs say…which I guess is my fault for not asking the actual numbers. This last appointment I kind of shut down after the bad news, so I think that triggered his response and calling my mother. My husband is actually my first point of contact for emergency, followed by my mom. I think he skipped over my hubby since my mom has been attending the appointments with me. My husband is a firefighter, so he seems to always be gone on my appt days. Like I said, he discovered that my RX had been filled and has determined I am resistent, but feels that I will be able to get there with more time, and possibly another dosage increase. My problem is that my doctor never really cares to address my symptoms. I am not sure if it is because of the communication barrier (he is Oriental and can be very difficult to speak with), or if he is only concerned with my numbers and nothing further. He told me to stop all medications, including the Cymbalta for fear of intereference. I am pretty sure he assumed the Methimazole would replace it as a relief to my pain, but that is not the case. I didn’t ask for any research or better explanation. He said stop, so I did. As far as my white blood cells…I was told by two endo’s that I was not a candidate for PTU because of my counts significantly dropping often. It is a more long term medication, so I was told that with my system the way it is I would end up hospitalized for ever cold or infection I came across. Since they thought I would be on the Meth for only 2-3 months, they felt it was and is my only prescription option. My dr is still saying that it is my only choice until I normalize for surgery. I know this is only the beginning, which is funny since it has been ongoing for 2 years, but I am ready and willing to do the work to get back to being me.

[elisiaann]

#1171321

I forgot….as far a surgeons go I am going to use a surgeon out of UAB that specializes in tis surgery. He is supposed to be the “best in the South” according to my dr. He will not refer me until I am normal. Should I be waiting to meet with the surgeon until then, or should I be trying to see him now?

[Kimberly]

#1171322

Hello – The preference is to get patients euthyroid with anti-thyroid drugs prior to surgery. However, in some cases (such as with a patient who has an extreme allergic reaction to ATDs), the surgery will be performed anyway, aftery giving the patient beta blockers and potassium iodide to reduce the risk of thyroid storm.

We’re not docs, so we can’t tell you what the right course is for you. If you are able to convince your doc to go ahead and give you a referral to the surgeon, it might be helpful to get the surgeon’s opinion on your case.

Take care!

[elisiaann]

#1171323

Thanks…That is what I am thinking. I wouls like to go ahead and speak with the surgeon and make sure I am on the right path.

[snelsen]

#1171324

Talk to the surgeon. He/she is the person to discuss it with you. I think you will feel very reassured and much more informed.
Shirley

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