[Kimberly]

#1062548

Hello – We aren’t medical professionals here — just fellow patients — so we can’t provide advice on dosing. I would continue to try and get an answer from your doctor’s or pharmacist’s office as to when it’s appropriate to start weaning off the meds. PLEASE keep bugging them if you aren’t feeling well…remember, the squeaky wheel gets the grease! ” title=”Very Happy” />

One suggestion I do have is to get actual hard copies of your lab numbers, rather than having the office call and tell you that you’re "normal". When it comes to thyroid hormone levels, the "normal" range is fairly wide. Some patients feel better at the middle of the range, other patients feel better at the high or low end. Once you get off the methimazole and start taking replacement hormone, it will be really helpful to track how you feel compared to exactly where your levels are on this spectrum.

[Suz01]

#1018074

I’ve been playing phone tag with the endo nurse since last week. I’m 7 weeks after rai and still on 10 mg of methmazole.
I forgot to take it one day and was feeling so much better. No lower back pain or joint pain. Think it would be ok to stop taking it or at least reduce to 5 mg a day? My free T4 was done last week and I was told it was in normal range.
Getting it checked every 2 weeks then tsh, free t3 and t4 before appointment on April 1st.
Oh, also on pradaxa and 37.5 mg of metoprolol twice a day. I had been taking 50 mg twice a day but cardio starting to wean me off.
One more thing, for the past week about an hour after taking the 10 mg methmazole I get so cold that I have to wear 3 layers of clothes, I’m freezing to the bone! It gradually gets better thru out the day.

[snelsen]

#1062549

Hi Suz, yep, Kimberly is right, we are not medical professionals! However, I think it is critical to do what Kimberly suggested. Get copies of every lab, sign whatever medical release of information form there is to sign, at every office, specify that they be mailed/faxed to you.
Regarding your meds, how you feel, and action to take, here are my thoughts.
1. You certainly SOUND and feel hypothyroid, I know the feeling of being (what I call) pathologically cold, very, very well! So your endo needs to know that.2. Call today, tell them that you have significant changes in how you feel, try to insist the the endo call you back. Sometimes you really need to be very proactive and aggressive about this, unfortunately. The gatekeepers are difficult to get through. I wish you luck with this. And if you can’t get through to them (can you email) tell them you are frighteningly cold, and wanted to notify him of this change, because you know he plans to taper, then stop your methiamazole. Ask if he wants to reduce or stop the ADT. He has to know this info from you (as you vainly try to communciate with the office) so he can decide. As a fellow Graves’ patient, without being a medical professional, it seems logical that your remaining circulating thyroid hormone is pretty much gone, and you have too much ATD on board.
(I am NOT talking as a medical person, just one with some common sense……(: It’s the same thing you think.

3. I suggest you absolutely do the same procedure for having all records for your personal file-with your cardiologist.
If you do not already know and fully understand why you are on pradaxa, I suggest you ask him/her what the indications are for you being on this drug. Also, the cardiologist needs to hear from you, especially that you are having one symptom of hypo. Check your pulse, give that information, for he/she may want to decrease your metoprolol even more. Cause you have been taking it for when your were hyper, with a fast heart rate.

Just suggestions, I sure hope you can get some good communication going today!
Shirley, fellow Graves’ person

[Suz01]

#1062550

I talked to the nurse today and she said the endo said stop the methmazole. Also, my free T4 was 0.99 from blood work done March 3rd. I get the free T4 checked again on March18th. Where is that in the "normal" range?

Thanks for the replies!

[snelsen]

#1062551

Hi Suz,
My lab range for that test is 0.6-1.2. But yours may be different. Why? Because labs have their own normal ranges, based on several variables, and how their machines are calculated. So I am not sure if yours in in the normal range. On my lab, it would be. But that means nothing.

GOOD for you for being persistent, getting the doc, and accomplishing this today. The other part of the the doctor patient relationship, is that they cannot make decisions without information from you! So be persistent like you were today.
Good job. I am sure you will feel much better now.

There is absolutely no reason for you not get a copy of your labs when you have this next appointment. You should meet no resistance at all. While you are there, BE SURE to ask for the proper form to have copies of your records and visits mailed to your home. This should not be questioned at all. A perfect to begin your relationship with Graves’ on the right, and informed foot (so to speak!)

You may not realize this, or have the opportunity to have this experience, but I can look up everything about my medical record electronically. In some instances, it may not be posted until you have had a discussion with your doc, but not for stuff like this.
Get those records!

You will probably find that you will be started on thyroid replacement at your next visit, if your labs AND YOU indicate you are ready for that. After you begin a replacement, it takes about 6 weeks to 2 months to get reliable labs which reflect if you are not hypo or hyper, with the other major component being how you feel! For instance, IF you feel hyper symptoms again, you need to report that. If you cannot move, or get out of bed, report that.

Hope this helps you and is reassuring. You, like all of use, will be just fine, but patience is the name having Graves’. It is frustrating.
Shirley

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