# Methimazole not working - Dr. won't give any other options, just increase same med.



## kcleaver

Any experience you can share would be appreciated!!

I was diagnosed with Graves Disease in Jan. Endo. started me on 5 mg. Methimazole 2/day for the first four weeks. Then I was bumped up to 10 mg. 3/day and prescribed a beta blocker when labs & symptoms got worse. Now Endo. wants to increase to 20 mg. 3/day.

Current symptoms:
Fast heart rate - resting hovers around 105, down from 130-140
Constant all over itching (present before Methimazole)
Groiter that is getting bigger
Increased difficulty in swallowing
Hot all the time, frequent sweating
Increased bowel movements
Inability to sleep, which is causing fatigue
Anxious & "short" personality
Constant sore throat (present before Methimazole)
Having to "clear" my throat very often
Breaking nails
Concentration lapses
Tremors
Significant weight lose
Eye symptoms - dry eyes, frequent irritation, inability to close eyelids sometimes, blurred vision
Nausea & stomach pain with the 30 mg. dose

Labs:
AB,TPO - >1000.0 ref. range 0-35
T3 - 252 ref. range 87-180 
T4 - 3.2 ref. range .6-1.6
TSH - <.010 ref. range .35-5.0
TSI - 6.2 no range found under ref. range

Endo. won't do scan until levels are "under control". Highly suggests RAI (which he won't do until a scan is done & will do at the same time).

A complication (aren't they fun?) I have is that I'm on anticoagulent for a clotting disorder. The Methimazole concentrates this and I've already been in the ER twice with untheraputic INR.

Higher dose now prescribed because my labs are continuing to worsen. I was told today that they "doubled" from the last draw (which I never saw, but were higher/lower respectively than above) . Endo. feels it's unsafe to perform ablation until labs improve. I'm concerned the higher dose will further irritate my stomach and cause havoc with my anticoagulent.

Questions:
1) What are the "normal" dose ranges for Methimazole? Is it common to have absolutely no response to the 30 mg./day dose?
2) Will increasing the dose make my stomach worse? I cannot afford to lose much more weight and this also affects my anticoagulent.
3) My liver enzymes have been "high" for a year now. My PCP expressed concern about this several months ago (before the diagnosis). I think I'm discovering that Methimazole can affect the liver. Is this right?

You would think I could get these answers from my Endo., but not getting them.

Thank you so much for any insight!
K


----------



## Andros

kcleaver said:


> Any experience you can share would be appreciated!!
> 
> I was diagnosed with Graves Disease in Jan. Endo. started me on 5 mg. Methimazole 2/day for the first four weeks. Then I was bumped up to 10 mg. 3/day and prescribed a beta blocker when labs & symptoms got worse. Now Endo. wants to increase to 20 mg. 3/day.
> 
> Current symptoms:
> Fast heart rate - resting hovers around 105, down from 130-140
> Constant all over itching (present before Methimazole)
> Groiter that is getting bigger
> Increased difficulty in swallowing
> Hot all the time, frequent sweating
> Increased bowel movements
> Inability to sleep, which is causing fatigue
> Anxious & "short" personality
> Constant sore throat (present before Methimazole)
> Having to "clear" my throat very often
> Breaking nails
> Concentration lapses
> Tremors
> Significant weight lose
> Eye symptoms - dry eyes, frequent irritation, inability to close eyelids sometimes, blurred vision
> Nausea & stomach pain with the 30 mg. dose
> 
> Labs:
> AB,TPO - >1000.0 ref. range 0-35
> T3 - 252 ref. range 87-180
> T4 - 3.2 ref. range .6-1.6
> TSH - <.010 ref. range .35-5.0
> TSI - 6.2 no range found under ref. range
> 
> Endo. won't do scan until levels are "under control". Highly suggests RAI (which he won't do until a scan is done & will do at the same time).
> 
> A complication (aren't they fun?) I have is that I'm on anticoagulent for a clotting disorder. The Methimazole concentrates this and I've already been in the ER twice with untheraputic INR.
> 
> Higher dose now prescribed because my labs are continuing to worsen. I was told today that they "doubled" from the last draw (which I never saw, but were higher/lower respectively than above) . Endo. feels it's unsafe to perform ablation until labs improve. I'm concerned the higher dose will further irritate my stomach and cause havoc with my anticoagulent.
> 
> Questions:
> 1) What are the "normal" dose ranges for Methimazole? Is it common to have absolutely no response to the 30 mg./day dose?
> 2) Will increasing the dose make my stomach worse? I cannot afford to lose much more weight and this also affects my anticoagulent.
> 3) My liver enzymes have been "high" for a year now. My PCP expressed concern about this several months ago (before the diagnosis). I think I'm discovering that Methimazole can affect the liver. Is this right?
> 
> You would think I could get these answers from my Endo., but not getting them.
> 
> Thank you so much for any insight!
> K


Wow! You are in advanced stage of Graves'!! I am sorry for this and wish to welcome you to the board.

Since you can't have RAIU (radioactive uptake scan) because you are on meds (doc should have thought of this in the first place), I do recommend surgery for 2 reasons. One, to just get it over with. Advanced stage really never goes into temporary remission and two, the need to see if there is cancer.

It is supicious. Your goiter is growing fast, difficulty swallowing etc.

May I know your gender, please?

Do you have swollen lymph glands in the neck/clavical area?

Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx

Do you have Lupus clotting factor? http://www.lupusuk.org.uk/factsheets/blooddisorders.pdf

We are here for you and I hope we can be helpful.

An addendum: High TPO such as yours can mean many things and one of them is cancer. I wish your doc would run Antithyroglobulin Ab.

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

Graves' and Hashi's cancer
http://www.thyroidmanager.org/Chapter18/18-cancothr.htm


----------



## kcleaver

Thanks for your reply, Andros. Yesterday's discussion with the intern really was a turning point. I felt like it was the culmination of being "put off". There weren't real answers to my questions and when I asked that they be discussed with the Dr., I was told it wouldn't make a difference. I'm starting to question going to see someone else. However, my PCP & the anticoagulent clinic are affiliated with the same hospital so staying with that group is best for overall care & communication. It's a hard place to be in...

I am a 37 yr. old female. I was diagnosed with Lupus at around 20. I was diagnosed with an "unknown autoimmune clotting disorder" after the birth of my 4th child & 3 PEs. I had really had symptoms all my life (heart attack at 19, unexplained swelling, chest pains, severe asthma -that really wasn't asthma we know now), but finally had one dr. that put all the pieces together. I've been doing well for 5 yrs. on anticoagulents, but started to go "south" the last year or so, especially the last several months.

My lymph gland under my right ear is enlarged and has been for some time off & on. I told the intern the last time I was in (when they first tripled my med) that my neck was starting to grow sore up the right side. Then I had this massive right ear ache with bleeding. The bleeding had stopped before I noticed the blood soaked pillow. I was told they really couldn't explain the bleeding other than my INR was high and that was probably the case and my eardrum was intact. The INR caused other bleeding as well and had risen due to the increased dose.

Surgery has been ruled out by the Endo. because of the bleeding risk. The last time I went in for an INR draw (with anticoagulent clinic), the test for the Lupus anitbody in the blood was also taken. I hope to hear those results this Friday.

I am trying to find out more information on the "normal" ranges for the Methimazole, but don't know where to find that info. When I asked yesterday if the dose I'm currently on is known to not have much effect, and was given a wishy washy answer. Now I've been scheduled out another month and am just anxious about waiting that long on a medication that has already caused so much trouble with my INR and wondering if they've tested for everything they should have.

Also, my maternal grandmom just finished with treatment for lymphoma. Just wondering if what I'm experiencing could be genetic? Not making an assumption that it's lymphoma or any other cancer for that matter, just curious~

Thank you for the direction and links. I don't want to wig out or become a hypocondriac, but for all my life, I've listened to drs. blow me off and have come close to dying so many times, that I'm trying to at least become a better advocate for myself.

What would you suggest is my next step? Should I seek out another Endo.? Should I ask my PCP for the test you mentioned? These could simply be added to the current labs.

Thanks again for the direction. I realize it's not based on a degree, but I tell you, many times the degrees don't provide direction based on experience... I just want to go about this in a well researched, careful manner.


----------



## kcleaver

I left a message this morning with my Endo. office stating that I would like to go ahead with the scan and not worry about radiation until we see what my gland looks like during the scan.

Just got off the phone with the Intern. On one hand she said I would have to go off my thyroid med. to do the scan, but then not a minute later she talked about trippling my dose again. I said, "well I'm not going to rush out today and fill it if I can get a scan done soon since I couldn't take it anyway". She seemed confused and agreed to call me back. I asked if the scan results could change the course of treatment. She said that if the whole thyroid was effected with the uptake, radiation is the way to go. If there are nodules causing the problem, then radiation isn't the way to go. I asked if there was a reason we were waiting to be able to radiation if that may not even be the way to go. She seemed confused again.

I looked at the sites you had directed me to - thanks 

Found scary info. on the thyroid cancer symptom site - 
The following represent symptoms typical of thyroid cancer.
•	A lump in the front of the neck
•	Hoarseness or voice changes
•	Swollen lymph nodes in the neck
•	Trouble swallowing or breathing
•	Pain in the throat or neck that does not go away
•	Persistent cough; coughing up blood
Patients with medullary thyroid cancer may also experience (in addition to the foregoing):
•	Diarrhea
•	Facial flushing/redness

I have all these symptoms with the exception of diarrhea.

When I asked the Intern about this, she kind of sighed said that my T3 & T4 levels wouldn't be elevated if it was cancer. I told her I wasn't trying to say I thought I have cancer, rather I was just concerned with what I had found.

She is checking with the Dr. to see if she can schedule the scan. I will see what she comes back with. If she still seems dismissive this afternoon or doens't agree to schedule the scan, I'm going to consult with another Dr.

Being able to just get through my thoughts is so helpful. I am sssoooooo glad I found this site. Thanks for all your support!!!


----------



## Andros

kcleaver said:


> Thanks for your reply, Andros. Yesterday's discussion with the intern really was a turning point. I felt like it was the culmination of being "put off". There weren't real answers to my questions and when I asked that they be discussed with the Dr., I was told it wouldn't make a difference. I'm starting to question going to see someone else. However, my PCP & the anticoagulent clinic are affiliated with the same hospital so staying with that group is best for overall care & communication. It's a hard place to be in...
> 
> I am a 37 yr. old female. I was diagnosed with Lupus at around 20. I was diagnosed with an "unknown autoimmune clotting disorder" after the birth of my 4th child & 3 PEs. I had really had symptoms all my life (heart attack at 19, unexplained swelling, chest pains, severe asthma -that really wasn't asthma we know now), but finally had one dr. that put all the pieces together. I've been doing well for 5 yrs. on anticoagulents, but started to go "south" the last year or so, especially the last several months.
> 
> My lymph gland under my right ear is enlarged and has been for some time off & on. I told the intern the last time I was in (when they first tripled my med) that my neck was starting to grow sore up the right side. Then I had this massive right ear ache with bleeding. The bleeding had stopped before I noticed the blood soaked pillow. I was told they really couldn't explain the bleeding other than my INR was high and that was probably the case and my eardrum was intact. The INR caused other bleeding as well and had risen due to the increased dose.
> 
> Surgery has been ruled out by the Endo. because of the bleeding risk. The last time I went in for an INR draw (with anticoagulent clinic), the test for the Lupus anitbody in the blood was also taken. I hope to hear those results this Friday.
> 
> I am trying to find out more information on the "normal" ranges for the Methimazole, but don't know where to find that info. When I asked yesterday if the dose I'm currently on is known to not have much effect, and was given a wishy washy answer. Now I've been scheduled out another month and am just anxious about waiting that long on a medication that has already caused so much trouble with my INR and wondering if they've tested for everything they should have.
> 
> Also, my maternal grandmom just finished with treatment for lymphoma. Just wondering if what I'm experiencing could be genetic? Not making an assumption that it's lymphoma or any other cancer for that matter, just curious~
> 
> Thank you for the direction and links. I don't want to wig out or become a hypocondriac, but for all my life, I've listened to drs. blow me off and have come close to dying so many times, that I'm trying to at least become a better advocate for myself.
> 
> What would you suggest is my next step? Should I seek out another Endo.? Should I ask my PCP for the test you mentioned? These could simply be added to the current labs.
> 
> Thanks again for the direction. I realize it's not based on a degree, but I tell you, many times the degrees don't provide direction based on experience... I just want to go about this in a well researched, careful manner.


Aw; bless your heart. Me too,honey bunny! I have permanant damage because of being fluffed off for over 20 years.

Yes, please get the Thyroglobulin Ab test.


----------



## Andros

kcleaver said:


> I left a message this morning with my Endo. office stating that I would like to go ahead with the scan and not worry about radiation until we see what my gland looks like during the scan.
> 
> Just got off the phone with the Intern. On one hand she said I would have to go off my thyroid med. to do the scan, but then not a minute later she talked about trippling my dose again. I said, "well I'm not going to rush out today and fill it if I can get a scan done soon since I couldn't take it anyway". She seemed confused and agreed to call me back. I asked if the scan results could change the course of treatment. She said that if the whole thyroid was effected with the uptake, radiation is the way to go. If there are nodules causing the problem, then radiation isn't the way to go. I asked if there was a reason we were waiting to be able to radiation if that may not even be the way to go. She seemed confused again.
> 
> I looked at the sites you had directed me to - thanks
> 
> Found scary info. on the thyroid cancer symptom site -
> The following represent symptoms typical of thyroid cancer.
> •	A lump in the front of the neck
> •	Hoarseness or voice changes
> •	Swollen lymph nodes in the neck
> •	Trouble swallowing or breathing
> •	Pain in the throat or neck that does not go away
> •	Persistent cough; coughing up blood
> Patients with medullary thyroid cancer may also experience (in addition to the foregoing):
> •	Diarrhea
> •	Facial flushing/redness
> 
> I have all these symptoms with the exception of diarrhea.
> 
> When I asked the Intern about this, she kind of sighed said that my T3 & T4 levels wouldn't be elevated if it was cancer. I told her I wasn't trying to say I thought I have cancer, rather I was just concerned with what I had found.
> 
> She is checking with the Dr. to see if she can schedule the scan. I will see what she comes back with. If she still seems dismissive this afternoon or doens't agree to schedule the scan, I'm going to consult with another Dr.
> 
> Being able to just get through my thoughts is so helpful. I am sssoooooo glad I found this site. Thanks for all your support!!!


You know? I almost fell out of my chair when you wrote what the intern said. Oh my dear Lord; please help us now!!! Cancer and thyrotoxicosis go hand in hand; they are bed fellows.

You have TSI; that is also a sign.
http://lib.bioinfo.pl/pmid:2261908

Given your myriad of health challenges; I am wondering if it would be wise for you to see an oncologist/ENT sort of guy/gal??

What do you think?

Will you please let us know about the Lupus clotting factor when your lab results come in?


----------



## kcleaver

The Endo office finally called back today and they will not consider a scan at this point. They won't take me off my meds to allow it. The question I had was that my labs are getting worse with the Methimazole anyway, can't we suspend to get the scan, look at it, and then decide if meds aren't even the way to go??

I got this, "look, I know you are looking online, but you don't what what you are looking at or for".

I was in my van during this discussion. As soon as I got home, I called an Endo. that someone referred me to. His nurse asked if I was currently seeing an Endo. since I had labs to bring. I said yes, they are taking the wait and see approach. She got me in on Tues.  She absolutely thinks I need some direction. Wait a minute, did I actually just say I spoke to a nurse without having to leave a message on a machine and wait for a call 48 hrs. later?

Sigh... I hope if the course cannot be changed at this point (yet) at least I won't be treated like an idiot.

I did get my labs from my PCP (that the Endo office wasn't exactly forthcoming with) while in for INR today-

1/25/2011	1/27/2011	2/16/2011	3/4/2011
AB, TPO >1000.0 
range [0-35]
T3 (Total)
range [87-180] 252 397 543
T4-Free	
range [.6-1.6] 3.2 3.4 3.6
TSH	<.010
range [.35-5.0] 0.016 0.012
TSI 6.2

I've been unable to sleep but 30 min. a day when I finally fall asleep trying to get stuff down around the house before the kiddos get home from school. I'm very tired and cranky - this is no way to be a mom or wife. I exploded at my husband tonight (in front of our kiddos - a first) and left the house to clear my head. I'm going crazy - litterally. I've been mixing up my dates, forgetting very routine things, slurring my speach or stuttering, not being able to complete thoughts in the middle of sentences, and more. I had a good cry (that killed my throat) in an empty parking lot & sat and listened to KLOVE for a while. That made me even more mad because all the songs were about His grace, mercy, love, etc... Kind of hard to see right now! No pun intended.

When I got home, I stood in the pitch black garage unable to go in because I heard my family still downstairs (not in bed yet). I couldn't get myself to go in for some time. If I could have left again without the garage door making noise, I would have.

I think the hardest thing about this besides my throat killing me, is that I have absolutely NO control over any of it. I don't have a say in what I want in treatment, I cannot control my body or now even my mind.

So sick of this already. How do people do this for years??

Sorry for the rant!!


----------



## honeysuckle2

You should get a couple of "second" opinions. Try to find a doctor at a research hospital if you can. Maybe they'll have more options for you.


----------



## Andros

kcleaver said:


> The Endo office finally called back today and they will not consider a scan at this point. They won't take me off my meds to allow it. The question I had was that my labs are getting worse with the Methimazole anyway, can't we suspend to get the scan, look at it, and then decide if meds aren't even the way to go??
> 
> I got this, "look, I know you are looking online, but you don't what what you are looking at or for".
> 
> I was in my van during this discussion. As soon as I got home, I called an Endo. that someone referred me to. His nurse asked if I was currently seeing an Endo. since I had labs to bring. I said yes, they are taking the wait and see approach. She got me in on Tues.  She absolutely thinks I need some direction. Wait a minute, did I actually just say I spoke to a nurse without having to leave a message on a machine and wait for a call 48 hrs. later?
> 
> Sigh... I hope if the course cannot be changed at this point (yet) at least I won't be treated like an idiot.
> 
> I did get my labs from my PCP (that the Endo office wasn't exactly forthcoming with) while in for INR today-
> 
> 1/25/2011	1/27/2011	2/16/2011	3/4/2011
> AB, TPO >1000.0
> range [0-35]
> T3 (Total)
> range [87-180] 252 397 543
> T4-Free
> range [.6-1.6] 3.2 3.4 3.6
> TSH	<.010
> range [.35-5.0] 0.016 0.012
> TSI 6.2
> 
> I've been unable to sleep but 30 min. a day when I finally fall asleep trying to get stuff down around the house before the kiddos get home from school. I'm very tired and cranky - this is no way to be a mom or wife. I exploded at my husband tonight (in front of our kiddos - a first) and left the house to clear my head. I'm going crazy - litterally. I've been mixing up my dates, forgetting very routine things, slurring my speach or stuttering, not being able to complete thoughts in the middle of sentences, and more. I had a good cry (that killed my throat) in an empty parking lot & sat and listened to KLOVE for a while. That made me even more mad because all the songs were about His grace, mercy, love, etc... Kind of hard to see right now! No pun intended.
> 
> When I got home, I stood in the pitch black garage unable to go in because I heard my family still downstairs (not in bed yet). I couldn't get myself to go in for some time. If I could have left again without the garage door making noise, I would have.
> 
> I think the hardest thing about this besides my throat killing me, is that I have absolutely NO control over any of it. I don't have a say in what I want in treatment, I cannot control my body or now even my mind.
> 
> So sick of this already. How do people do this for years??
> 
> Sorry for the rant!!


Oh, you just rant all you need to. I am so worried about cancer for you and am quite relieved you have an appt. on Tuesday. I will be waiting w/baited breath and am keeping you in my prayers.

Just think of our friend Job. You will get through this and we are here to help. When I was so sick, I did not even have a PC and had no support whatsoever except for my wonderful wonderful husband. But all he could do was love me; he is not a doctor.

Hang on to that spiritual life-line for it will serve you well your entire life. And you are going to have a life; yes, indeed!

You are so hyper, it's a wonder you are not going into psychosis. I did and it was totally scary!

I appreciate the labs and ranges because that helped me a lot.

And please try not to worry. If you need surgery or RAIU, they will take fine care of you. You are not the first to have multiple health issues and you won't be the last. Believe me.................I have seen many many miracles and there are many more to come. For you, for me...............for everyone!!


----------



## kcleaver

Lots I'm procesing right now and trying not to freak out without clarification (or even after clarification)...

Went into new Endo. on Tuesday. *I really like him*. When he came into the room the first thing he did after introductions was ask about my husband, asking that I tell him hello.

We talked for quite some time. He watched my throat closely which kind of made me uncomfortable at first. After much discussion and review of the paperwork I filled out, he did an exam. He told me what he was looking for and what he was finding as he went along. He does not like the way my thyroid feels. He wants it to be "softer"? He also felt more unevenness (sp?) than he'd like. He ordered a sonogram and additional bloodwork to be done that day. He said he is wondering if there is something besides Graves. He has me coming back in today (Monday). By this time, he expects all lab work back and will be able to give me an idea of treatment plan. Humm, imagine that, being informed about what is going on. He asked me what I wanted and if I had any more questions several times.

My PCP called the next morning (Wed.) because she had received a copy of the sono and didn't know who the Dr. was. I asked her how it looked and she said she didn't know what he was looking for exactly and he would go over the results with me. Seemed like she was kind of dancing around.

While getting bloodwork done on Tues., I asked the lab tech. when the results would be expected. He said 3 days.

OK, so the part I'm trying not to freak out about? I picked up a vm after hours on Fri. from the Edno.'s office. I now have an appt. with the KC Cancer Center. Fri. would be 3 days for the lab work. I cannot tell you how anxious I am about going in (to the Endo.) this afternoon...

BTW - At one point, he asked how much calicium and vit. D I am taking. I told him I'm not taking any. He asked if the previous Endo. had not requested that. I told him no. He was annoyed, stating that he felt not everything was being addressed. He explained that Graves disease will affect the calcium level in my bones. I had run across this online, but when I asked my previous Endo.'s intern about it, I got the eyerolling, I know you're looking online brushoff and nothing else was said about it. I am so glad I decided to find a Dr. that listens to my concerns...

Also, when talking with my PCP on Wednesday I asked about the results for the Lupus clotting antibodies. She said the lab was negative, so I should be able to start using my home machine again. I was excited about this and asked her about getting more supplies now. She is uncomfortable about not going into the lab at this point because my INR is still so out of whack. Once it has settled down, I can go back to home testing  Which is probably a pretty good idea since my chest pains and knots in my legs tend to suggest that I'm throwing clots.

Although I'm anxious about what the next few weeks/months hold, I feel so much better that this Dr. is at least getting to the bottom of it.

It's easy for me to kind of just stand back when it comes to me and concentrate on my family & others rather than myself. I appreciate your support to stand up for mysef  If nothing else, this board has given one person a stonger voice. THANK YOU.


----------



## Andros

kcleaver said:


> Lots I'm procesing right now and trying not to freak out without clarification (or even after clarification)...
> 
> Went into new Endo. on Tuesday. *I really like him*. When he came into the room the first thing he did after introductions was ask about my husband, asking that I tell him hello.
> 
> We talked for quite some time. He watched my throat closely which kind of made me uncomfortable at first. After much discussion and review of the paperwork I filled out, he did an exam. He told me what he was looking for and what he was finding as he went along. He does not like the way my thyroid feels. He wants it to be "softer"? He also felt more unevenness (sp?) than he'd like. He ordered a sonogram and additional bloodwork to be done that day. He said he is wondering if there is something besides Graves. He has me coming back in today (Monday). By this time, he expects all lab work back and will be able to give me an idea of treatment plan. Humm, imagine that, being informed about what is going on. He asked me what I wanted and if I had any more questions several times.
> 
> My PCP called the next morning (Wed.) because she had received a copy of the sono and didn't know who the Dr. was. I asked her how it looked and she said she didn't know what he was looking for exactly and he would go over the results with me. Seemed like she was kind of dancing around.
> 
> While getting bloodwork done on Tues., I asked the lab tech. when the results would be expected. He said 3 days.
> 
> OK, so the part I'm trying not to freak out about? I picked up a vm after hours on Fri. from the Edno.'s office. I now have an appt. with the KC Cancer Center. Fri. would be 3 days for the lab work. I cannot tell you how anxious I am about going in (to the Endo.) this afternoon...
> 
> BTW - At one point, he asked how much calicium and vit. D I am taking. I told him I'm not taking any. He asked if the previous Endo. had not requested that. I told him no. He was annoyed, stating that he felt not everything was being addressed. He explained that Graves disease will affect the calcium level in my bones. I had run across this online, but when I asked my previous Endo.'s intern about it, I got the eyerolling, I know you're looking online brushoff and nothing else was said about it. I am so glad I decided to find a Dr. that listens to my concerns...
> 
> Also, when talking with my PCP on Wednesday I asked about the results for the Lupus clotting antibodies. She said the lab was negative, so I should be able to start using my home machine again. I was excited about this and asked her about getting more supplies now. She is uncomfortable about not going into the lab at this point because my INR is still so out of whack. Once it has settled down, I can go back to home testing  Which is probably a pretty good idea since my chest pains and knots in my legs tend to suggest that I'm throwing clots.
> 
> Although I'm anxious about what the next few weeks/months hold, I feel so much better that this Dr. is at least getting to the bottom of it.
> 
> It's easy for me to kind of just stand back when it comes to me and concentrate on my family & others rather than myself. I appreciate your support to stand up for mysef  If nothing else, this board has given one person a stonger voice. THANK YOU.


It is so so good to hear from you. I have been on tenterhooks here waiting to find out the latest.

Empowerment is what it is all about. If you can advocate for yourself, you will gain milestones.

copy and paste

In addition to testing for lupus anticoagulant, it may sometimes be necessary to test for coagulation factor VIII levels. Strong factor VIII inhibitors (specific antibodies against factor VIII) can decrease factor VIII levels and cause false positive lupus anticoagulant tests. Elevated factor VIII levels, as may be seen in an acute infection or with replacement therapy when someone has Hemophilia A, may shorten the PTT time, leading to a temporary false negative test for lupus anticoagulant.

http://www.labtestsonline.org/understanding/analytes/lupus_anticoagulant/test.html

Glad you can go back to your home testing; I really am. That is a bit of good news.

It sounds to me like your found a really good doctor. If you have time,I sure would like to know how it went today and I am keeping you in my thoughts and prayers for Friday.

Even though some of this is disconcerting (and that is putting it mildly), it is very very important to use the "rule out, rule in system" here.

And it is better to know than not to know. Whatever it turns out to be, something can and will be done about it.


----------

