[mamabear]

#1066112

(((((((((((bartlett)))))))))))))

Nothing is easy when it comes to graves’!
What thyroid medicine are you taking?

[jjbartlett]

#1066113

I am taking Inderal and Propylthiouracil 100mg 3 three times a day. I was taking Tapazole 20mg three times a day. I didn’t know about Tapazole’s side effects until after I had been taking it. Now I know that both may cause similar side effects. I am going to try calling the pharmacy since no one seems to know. My doctor is almost always unreachable which troubles me because I think I should have a good relationship with a doctor who is going to treat me for the rest of my life.

[mamabear]

#1066114

Your pharmacist would be a great tool during this time in your life. To be perfectly frank, your pharmacist would know more than your dr. Dr’s are there to treat you and know what they are giving you. Pharmacists are there to make sure that they know the most updated information on what you are taking.

Yes loss of taste does happen with both Tapazole and PTU. I took PTU. I learned how to spiff up my food with herbs and spices, instead of thinking how depressing it is or can be, think of it as redecorating your taste buds!

PTU takes disgusting, i hate it and it isn’t coated well enough and well its’ just gross! But it wont help to stomp our feet about it. I took it with milk to help. My dh thought the faces I made were funny so it was of some amusement at least for him. We truly tried to keep a smile on about this whole disease.

[jjbartlett]

#1018628

Today I have been frustrated because I seem to get no answers from the internet or my doctor about how long these lovely symptoms will last. Has anyone here loss their sense of taste, had leg cramps, and a numb mouth as a result of the medication the doctor is giving me? If happened in the past can you please give me an idea of how long I will be tasting cardboard sandwiches? It has been almost a week and my symptoms have not went away. They changed my medicine but it has not changed the reaction from the previous medicine . Maybe I am just impatient but, I can barely eat because everything has no flavor only texture and that can be quite depressing. At least if I had some idea, I could see the light at the end of the tunnel. It wouldn’t be so bad if that were the only thing that happened but I have had cramps and I feel like my mouth is anesthetized. If no one knows than if it does go away eventually I will make sure to tell people how long it lasted for me. I think the lack of information on the internet about how long side effects last is really strange. It only gives the drug side effects without the duration. Wouldn’t that trouble you if you didn’t know when your senses would come back-if ever? I think I would have opted for the radioactive iodine right away if it had been made clear to me that this was a possibility.

[Beths49]

#1066115

I have been on 10 mg of Methimazole for 16 days now. I was diagnosed about 3 weeks ago. I went back to my dr today and he wants me to up my dosage to 30 mg of Methimazole a day and take all 3 pills at once, not spaced out? Does that sound right? He got very upset with me today because I had questions so I am afraid to ask him anything. I am scared that upping my dosage will cause bad side effects and I have read here that the side effects can occur or pop up in the first few months. I have had no problems on the 10mg a day so far. I am terrified of drs and medications, am very sensitive to medications, and told him this on my first visit and he seemed so understanding but today, my second visit with him was totally different. He told me that he was the dr, to do what he said or dr myself or find myself another dr. I just want to educate myself about this disease and the medication. He said that was his job, not mine. This was definitely not a good day. I know things could be much worse but this is still scary.

Thanks for any help and I hope you improve soon.

[Ski]

#1066116

Methimazole can be taken once a day ~ PTU is the one that must be evenly spaced ~ so that part of it doesn’t need to be a worry. If the doctor was upping your dose in response to your lab results, again, shouldn’t be a worry ~ you can try it and see what happens. It is fairly typical that we need to take more ATDs at first, then reduce the dose as levels come down, so it doesn’t have to mean you’ll need that high dose always.

More of a concern is your doctor’s attitude. This is a LONG road you’ve started down, and it is important to have someone "in your corner," acting as a team member, not as "the boss." You can stay with this doctor until you find another ~ in other words, don’t stop treatment just because your doctor is acting in a way that’s not helpful ~ but it would be good for you to find another. Check your insurance coverage and see who you are allowed to see, and just start looking into them. You can learn a lot just from the front office staff, or if you know someone else who is treated by an endocrinologist, check and see if that doctor is taking new patients (if your acquaintance likes them, of course!). There are ways you can investigate doctors without committing to having them as your doctor for always ~ check and see if the doctor will meet with you briefly after office hours, for example. Ask for 15 minutes, and keep to that time. You’ll learn a lot, if you bring your questions with you. It’s tough to find an endocrinologist with "extra" time, so try to be open-minded as you go through the process. Apparently it’s either an under-chosen specialty or else an over-needed one, but either way I’ve never known doctors quite as busy as the endocrinologists I’ve seen.

Wishing you luck, glad you found us!

[Beths49]

#1066117

Thank you for your reply and help. I am seeing my pcp today at 1:30pm. I have not seen him as of yet because my husbands ins. changed and we thought he was not on our plan. This all started when I went to another dr for my high BP and she found "something" in my thyroid, order the ultrasound, it was clear of nodules but enlarged. She got my blood work back, she only did a TSH and called me on a Thurs., said I was hyPERthyroid and that I had an appt with the endo the next day. It’s the same endo I spoke about in my earlier post. He prescribed the 10mg of Methimazole. As I said, I have had no bad side effects from that dose. Yesterday though was a different matter. He didn’t like me asking questions and. He had my blood work back, complete thyroid work up included and I am alot hyPERthyroid. He wants me to up the medication to 30mg a day, taken at one time a day as stated in my previous post. It really scares me as I am sensitive to medication, but I didn’t dare say anything else to him. His last words to me yesterday was that they would call me with the blood work results and tell me then whether to take the 30mg. I said excuse me? You don’t want me to start the 30mg now then? He sighed, slammed the paper work down and said we will call you and walked out. I know I sound dense but I had to ask to make sure I heard his instructions carefully as that fully contradicted what he had said in his "rant". The reason I am seeing my pcp(We have since found out that he is in our ins. plan) is that the first dr I saw for high BP did not address the problem, only sent me to the Endo. The Endo didn’t think I needed anything for it at my first visit. Yesterday, after his ranting to me, I was afraid to ask. My BP BEFORE I saw him was 170? over 101 and my heart rate was 104. After I came home, got calmed down, I took my BP and it was 140/90 with pulse rate of 90. I took it again this morning at 8:00am and it was 155/98 with a pulse rate of 93. So therefore, I called and made an appt. with my pcp for today at 1:30. Am I doing the right thing? I will take my blood work results from both drs and the ultrasound results with me today. And let me add that my BP has been a problem that was found when I went for preop on Dec. 23, 2009. I was told then to wait until I had my surgery, was released by my dr and to then check it for 2 weeks and if it was still high to see my dr. I was released by my surgeon on Feb. 8th, saw this other dr for the BP on Feb. 23rd. Thank you.

[stephg]

#1066118

Hey JJB,

Dont know if its any help but could it be the inderal causing it? I had a terrible experience with inderal, I couldnt eat, was nauseus kept having sugar crashes. And then doc changed me to betaloc and straight away I felt the difference. Anyway just a suggestion. I had an awful time of it with antithyroid medication so I feel your pain. I had RAI today so fingers crossed things will change:) Best of luck! x

[Kimberly]

#1066119

Beths49 – There’s certainly no harm in getting your General Practitioner’s input. Some GPs are comfortable with helping Graves’ patients adjust dosages on anti-thyroid drugs or replacement hormone, but others are not. It’s at least worth asking, since you were unhappy with the results of your last doctor’s visit.

As Ski said, this is a long process, and you can expect to have visits with your doctor every few weeks until your levels stabilize. So you definitely want someone who communicates clearly, and who makes you feel comfortable when you ask questions.

I find that it’s helpful to get labs done a week or two *before* my doctor’s visit. Then we can spend the visit discussing the results…instead of me having to wait for a call after the fact with dosing instructions.

Best of luck…keep us posted on how it goes today!

[dlf]

#1066120

My daughter was diagnosed with Graves not long ago and was taking Methimazole 60mg per day for 4 weeks when she lost her sense of taste. Did your sense of taste come back and if so, how long did it take to come back?

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