Not sure what to do about my medication?

[karen18]

Can anyone help?

I was diagnosed with Graves Disease a little over a month ago.

I've been taking 20mg of Neo-mercazole for a month and was dropped back to 5mg on Friday by my Endo. I am now having heart palpitations, is this normal when you drop your dosage? or do I need to increase my dosage again?

I'm just really worried because I dont want to start from scratch all over again.

[karen18]

I should clarify that I was on 20mg of neo-mercazole a day, and now I'm on 5mg a day which I started this morning.

[Andros]

Can anyone help?

I was diagnosed with Graves Disease a little over a month ago.

I've been taking 20mg of Neo-mercazole for a month and was dropped back to 5mg on Friday by my Endo. I am now having heart palpitations, is this normal when you drop your dosage? or do I need to increase my dosage again?

I'm just really worried because I dont want to start from scratch all over again.

That is a huge drop in meds. Was the decision to do this based on recent labs for TSH, Free T3 and Free T4???

No wonder you have heart palps back. Are you on a beta-blocker?

Sorry about your diagnosis but you are in good company here!!! Let us know how we can help!

[karen18]

I thought it was a huge drop as well but because I'm not the expert I just did what he asked. My Endo is more than a little bit intimidating as well. When I ask him questions he quickly shuts me down and just tells me how it has to be.

When I called him he said that my test results (T4, T3 & TSH) were just below the normal range and that was the reason why he wanted to drop me down from 20mg a day to 5mg a day. He actually wanted me to go off the neo-mercazole for 3-days and recommence again on Monday. As soon as the heart palpitations started the following day I panicked and took my 5mg dosage then. As far as today goes I haven't had another heart palpitation... let's hope it lasts?

[desrtbloom]

Are you on a med for the heart palpations? I have been on 20 mg of Methimazole and was just cut down to 10 mg, but I also have been on Propanolol the whole time I've been on the Methimazole for racing heart, palpations and breathing problems. I would call your doctor first thing Monday a.m. if you are still have palpations.

I'm sorry you are having these issues. It is scary when your heart is beating out of control.

[desrtbloom]

Also, you might want to request a complete copy of all your labs so you can track your levels. I'm sorry your doctor is intimidating. Maybe you might want to find one that will work with you and not just talk at you, especially when this thyroid stuff is confusing!

:hugs:

[karen18]

I was on inderal to help with the heart palpitations etc. However I only took them when I needed them and my Endo told me off. He said I either take them as prescribed or throw them away. He does talk at you a lot! If I ask him questions he quickly shuts me down. It's like he just wants to move onto the next patient and get you out of there because he's always in such a rush.

I don't like him at all and I'm a bit worried that he doesn't really know what he's doing? or care for that matter.

I just went to have a shower before and I was dizzy and weak. I'm now laying on the couch, my hands are trembling and I'm getting the heart palpiations again. This massive drop in meds is making me ill again I can just feel it. I'm not sure what to do next? Should I maybe just go back to my 20mg a day until I speak to my Doctor? I trust her, I just don't trust my Endo and haven't sighted my results either they were sent directly to him and I had to call him to find out if I had to adjust my meds or not. He was very short with me on the phone because he had been ill for a week. He just told me to stop taking them for a few days and then start back at 5mg a day of the neomercazole. ike I said I panicked yesterday not being on them so I started the 5mg yesterday. It's not helping though because I still feel the dosage is way to low and I just feel like rubbish, so maybe he has the dosage wrong?

Please any advice would help because I have no idea what to do?

[Lovlkn]

I was on inderal to help with the heart palpitations etc. However I only took them when I needed them and my Endo told me off. He said I either take them as prescribed or throw them away. He does talk at you a lot! If I ask him questions he quickly shuts me down. It's like he just wants to move onto the next patient and get you out of there because he's always in such a rush.

I don't like him at all and I'm a bit worried that he doesn't really know what he's doing? or care for that matter.

I just went to have a shower before and I was dizzy and weak. I'm now laying on the couch, my hands are trembling and I'm getting the heart palpiations again. This massive drop in meds is making me ill again I can just feel it. I'm not sure what to do next? Should I maybe just go back to my 20mg a day until I speak to my Doctor? I trust her, I just don't trust my Endo and haven't sighted my results either they were sent directly to him and I had to call him to find out if I had to adjust my meds or not. He was very short with me on the phone because he had been ill for a week. He just told me to stop taking them for a few days and then start back at 5mg a day of the neomercazole. ike I said I panicked yesterday not being on them so I started the 5mg yesterday. It's not helping though because I still feel the dosage is way to low and I just feel like rubbish, so maybe he has the dosage wrong?

Please any advice would help because I have no idea what to do?

Going from 20 to 5 is a huge drop, especially if you were dx'd as hyper.

Chances are you did test at low range but with Graves things can change quickly and it sounds like the reduction was too fast too quick. If it were me I would take 10mg until I could speak to another doctor or maybe even 15.

[Andros]

I was on inderal to help with the heart palpitations etc. However I only took them when I needed them and my Endo told me off. He said I either take them as prescribed or throw them away. He does talk at you a lot! If I ask him questions he quickly shuts me down. It's like he just wants to move onto the next patient and get you out of there because he's always in such a rush.

I don't like him at all and I'm a bit worried that he doesn't really know what he's doing? or care for that matter.

I just went to have a shower before and I was dizzy and weak. I'm now laying on the couch, my hands are trembling and I'm getting the heart palpiations again. This massive drop in meds is making me ill again I can just feel it. I'm not sure what to do next? Should I maybe just go back to my 20mg a day until I speak to my Doctor? I trust her, I just don't trust my Endo and haven't sighted my results either they were sent directly to him and I had to call him to find out if I had to adjust my meds or not. He was very short with me on the phone because he had been ill for a week. He just told me to stop taking them for a few days and then start back at 5mg a day of the neomercazole. ike I said I panicked yesterday not being on them so I started the 5mg yesterday. It's not helping though because I still feel the dosage is way to low and I just feel like rubbish, so maybe he has the dosage wrong?

Please any advice would help because I have no idea what to do?

Karen; it might be a good idea to go doctor shopping. This definitely is not part of the healing pathway. One needs to have a doctor who acts nicely, shows concern and also knows what they are doing. I don't think your current doctor fits any of the above.

Being stressed w/ your doctor is counter-productive to your health. You should be able to talk frankly with your doctor about "any" concerns you have.

[CA-Lynn]

Karen,

Fire your doctor. Find a new one. Part of being a good doctor is listening to the patient and working with them so that there is a better chance of treatment compliance and patient trust. That's not working here.

One thing people with chronic illnesses need to learn is that a key part of a successful outcome depends on your relationship with your doctor. Intimidation has no place here. And in all fairness, you need to learn to speak up and be heard.

So find a new one and learn to investigate drugs before you take them and become more proactive in your treatment decisions. This is YOUR life and YOUR body and you need to be the best advocate for yourself that you can be.

You can do it!

[karen18]

Lovlkn: You and I totally think a like. I couldn't stop crying earlier I was an absolute mess. I wasn't sure if it was because of the huge drop in my meds or just because I am so over feeling like this. Anyway I did what you suggested and gave my body what I think it needed as well which was 10mgs :) That seems to be working for the time being... One thing I'm not sure about, is should I be splitting the meds to 5mg in the morning and the other 5mg at night? I'm going to make an appointment to see my doctor anyway but it probably won't be until Friday because that's the only time I can get in to see her. Will have to make do for the time being.

Andros & Ca-Lynn, I totally agree as of today my Endo has been given the flick. To be honest it was a bad fit from day one. I used to work in a hospital and I am all about an empathetic approach to patients... This guy seems to be all about money and time. To think that with everything I have been through in the past 24-hours, this guy probably wouldn't even give a damn if I called him tomorrow to tell him. In fact I know he wouldn't because of the type of person he is. I know there are some really good doctors out there so I'm going to go and find me one :)

If anyone knows of a good endo in Melbourne (Vic) please let me know?

Thanks everyone for your advice :)

[CANDON]

Get a copy of your results and post them so the more knowledgeable members on this board can suggest a solution for you - again we only suggest we are not doctors...

As far as the blockhead you have for an ENDO give him or her the high five bye bye wave as you leave..IF he or she will not work with you..

Now, I do have a suggestion- before you dismiss them - do you have a good friend that you have not told about the ENDO handy? If so take him or her with you for the next visit..

I thought my ENDO was being a pain as well, but in my hyper state it was me. I took my wife on every visit after the first one and she did the listening, I did the complaining, my endo did the healing and we all reached a satisfactory solution. In fact my endo was happy to have my wife along...I can be a bit intimidating...

[Lovlkn]

Lovlkn: You and I totally think a like. I couldn't stop crying earlier I was an absolute mess. I wasn't sure if it was because of the huge drop in my meds or just because I am so over feeling like this. Anyway I did what you suggested and gave my body what I think it needed as well which was 10mgs :) That seems to be working for the time being... One thing I'm not sure about, is should I be splitting the meds to 5mg in the morning and the other 5mg at night? I'm going to make an appointment to see my doctor anyway but it probably won't be until Friday because that's the only time I can get in to see her. Will have to make do for the time being.

Andros & Ca-Lynn, I totally agree as of today my Endo has been given the flick. To be honest it was a bad fit from day one. I used to work in a hospital and I am all about an empathetic approach to patients... This guy seems to be all about money and time. To think that with everything I have been through in the past 24-hours, this guy probably wouldn't even give a damn if I called him tomorrow to tell him. In fact I know he wouldn't because of the type of person he is. I know there are some really good doctors out there so I'm going to go and find me one :)

If anyone knows of a good endo in Melbourne (Vic) please let me know?

Thanks everyone for your advice :)

Hi Karen,

I am not real familiar with neo-mercazole but this link says you should be splitting the dose.

DOSAGE AND DIRECTIONS FOR USE:
10 mg to 60 mg daily according to the severity of the disorder. The dose should be gradually reduced to the smallest amount which will control the disease. Daily dosage should be divided.

http://home.intekom.com/pharm/lagamed/nmercaz.html

Try and find yourself a new doctor.

lovlkn

[Debbie from Milwaukee]

Karen:
I think for now you should go with the advice of your regular doc that you trust to get through this current med crisis. After that, I agree with the other people posting: you should get a new endo doc. Go with referrals from your primary doc or other people whom you trust.

My daughter's doc stated to her that a good doctor needs feedback from the patient (especially in the highly complex world of endocrine and auto immune disorders) in order to fine tune accurate diagnosis and treatment. Your current doc works on HIS timetable and wants to dish out HIS information without so much as a question from you--like a large lecture class to a bunch of timid freshmen. None of this kind of doctoring will help you in either the short or the long run. Go with your primary doc for medical advice, and go with your gut as you fire one endo physician and hire another!

[Debbie from Milwaukee]

If anyone knows of a good endo in Melbourne (Vic) please let me know?

Thanks everyone for your advice :)



This is the thyroid forum area. Look around and click on a forum member named Smilerdeb. She is very compassionate, well informed, and guess what--she lives in Melbourne! You could private message her and see who she might recommend to you.

Good luck!!!

[karen18]

Thanks so much Debbie I'll give it a shot and let you know how I go :)

I'm looking forward to getting a new Endo. My doctor is great btw, it's just my endo I have the issue with.

[karen18]

Hi Karen,

I am not real familiar with neo-mercazole but this link says you should be splitting the dose.



http://home.intekom.com/pharm/lagamed/nmercaz.html

Try and find yourself a new doctor.

lovlkn
Lovkln, I read that too regarding halving the doses - Thanks for looking into it for me, you're a gem :)

I took 10mg of the (neo-mercazole) yesterday as a full dose because as I said to you 5mg just wasn't cutting it and my body went into a melt down. Last night it seems that the 10mg wasn't enough either because the palpitations started again. I took a further 5mg to take my daily intake up to 15mg but then read later that the dosages need to be split.

Today I took 7.5 mg in the morning and plan to take another 7.5mg tonight so it's split. plan to stay on the 15mg a day for about a week and then cut back to just 10mg. When I feel that everything is stable I will go and see my doctor and get another set of bloods done. I'll then post them on here and get some advice.

I know what I'm doing at the moment isn't ideal with my dosage going from nothing, to 5, to 10 and now 15... But if my stupid Endo hadn't told me to stop in the first place my body wouldn't have reacted the way it did. Now I am in so called damage control trying to balance my levels again... That Endo is seriously a complete idiot! On the upside, I am feeling better today so I think my levels are starting to settle down again.

I just pray that I'm doing the right thing? I'm just listening to my body now, I figure you can't go wrong if you do that right?

[karen18]

Get a copy of your results and post them so the more knowledgeable members on this board can suggest a solution for you - again we only suggest we are not doctors...

As far as the blockhead you have for an ENDO give him or her the high five bye bye wave as you leave..IF he or she will not work with you..

Now, I do have a suggestion- before you dismiss them - do you have a good friend that you have not told about the ENDO handy? If so take him or her with you for the next visit..

I thought my ENDO was being a pain as well, but in my hyper state it was me. I took my wife on every visit after the first one and she did the listening, I did the complaining, my endo did the healing and we all reached a satisfactory solution. In fact my endo was happy to have my wife along...I can be a bit intimidating...
Candon, He is a blockhead..lol. As for giving a high 5 on the way out the door... I can think of a lot of things I would like to do to him, but I high 5 isn't part of the equation ;)

I plan to get this neo-mercazole down to 10 mg and then go and get some more blood tests done. I will post the results on here like you suggested because I would really like to get feedback from people that have actually gone through this. I feel more supported on here then I do from my own friends and family. It's nice to talk with people that know what you're going through, so thanks for your support :)

[karen18]

Are you on a med for the heart palpations? I have been on 20 mg of Methimazole and was just cut down to 10 mg, but I also have been on Propanolol the whole time I've been on the Methimazole for racing heart, palpations and breathing problems. I would call your doctor first thing Monday a.m. if you are still have palpations.

I'm sorry you are having these issues. It is scary when your heart is beating out of control.
It sounds like your dosage is what I should be on? My endo said that my levels were just below normal when he cut me back to 5mg.

How were you when you went from 20mg to 10mg?

Like I said my Endo told me to stop altogether for 2-days and then start back on 5mg a day. My body had a complete melt down so his advice was useless. I have now been in damage control ever since and I'm now on 15mg a day which I am splitting into to 7.5mg dosages for the morning and night. Next week when I adapt to the 15mg I'll cut it back to 10mg.

After that I think I better go and get some new bloods ran then and gauge where I'm at.

As for my so called Endo I won't be going back. I really hate this man now for turning my world upside down . I was doing great until he did that. He never even told me what to expect? He just told me what to do and said he had to go. Horrible man.

Anyway I'll get a new Endo but for the time being I love my doctor so we'll just get my levels sorted and then try out a new Endo.

[Debbie from Milwaukee]

Karen:
I think I know what desrtbloom is getting at. The Propranolol that is mentioned is a type of beta blocker. I don't understand all what it does, but I think it can help the symptoms of a racing heart (although it only deals with symptoms and doesn't treat the out of control thyroid). This is why desrtbloom said you could call your primary doc right away to see if you could get a prescription for some type of beta blocker that would be good for you to use. I don't know if it can just be used on an as needed basis or every day.

When my daughter was first diagnosed with Grave's disease a little over 3 years ago, she wasn't given this med to help her symptoms until I did research and asked the docs for it. My daughter went though a lot of needless suffering before getting this med. Do yourself a favor and consider asking your primary doc if it is something that would help you manage symtoms.

I have been learning the last 2 months that thyroid disease is REALLY COMPLEX. In fact, once you DO find a competent endo doc to help you, you might want to ask folks on this forum (and also the thyroid forum on medhelp.com if you want) what are some really good questions to ask RE: correct diagnosis and treatment. It is becoming apparent NOW that 3 years ago my daughter's docs completely missed diagnosing her with another autoimmune condition (Hashimoto's thyroiditis). She appears to have a condition known as hashitoxicosis, has a problem converting standard T4 thyroid supplement to useable T3, has extremely low magneseum, still has significant thyroid tissue, and may have significant problems with her andrenals. All of this physical havoc has landed her in the 3rd psychiatric hospital in 2 months! I tell you all of this not to discourage you, but to remind you to stay ever vigilant to keep asking experts and people with endocrine conditions all of the questions you can think of. Best wishes with all of this!

[karen18]

Thanks Debbie, I do have a script for the beta blockers but I've had them before and becaue I have low blood pressure the make me feel weak/tired and dizzy.

I've been talking to smilerdeb like you suggested. She's awesome! :)

She actually doesn't have an Endo because like me she had a bad experience with hers not giving a damn either. In stead she just sees her GP her is great! I think I might get mine undercontrol and then do the same.

I'm on 10mg of my meds starting today. Do you know how long it takes for the thyroid to react? The only reason I ask is that I want to get a Thyroid function test tmrw so my GP can check my levels for me on Friday. The thing is I've been slowly decreasing my intake of meds over th past few days and I don't want this to effect my test results.

If I'm on 10mg as of today, how much time should I wait before I go and get me levels checked? Like I said I want an accurate reading.