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Old 08-22-2009, 07:04 PM   #1
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Question Hyperthyroid-PTU Question

Hello All


I was diagnosed with Hyper-T in February. I noticed a lump in my throat on the left side and set up an appointment with my PCP. He knew it was my thyroid immediately just by looking at me. I have always had panic attacks in one form or another since childhood so I dismissed all the warning signs I had prior to the goiter becoming pronounced..He put me on 300 mgs of PTU a day and I went for a series of blood work...all my thyroid levels were normal. I am unable to take beta-blockers because of my asthma so I have to live with the palps. I began feeling better for a few months until I noticed all the same symptoms returning again..then I noticed the right side of my thyroid swelling. I have that wonderful butterfly shape across my throat now. I went back again to see my PCP and he informed me of two things...one..I have to see an endo ( couldn't get an appointment until Oct...) and he wants me off the PTU because it can damage my liver. I convinced him to leave me on the PTU because he couldn't give me an alternative. So, Is there an alternative to the PTU? Have any of you that have taken it had liver issues. Also, when I only had the left side involved I was pain free...now that the whole thyroid is enlarged I'm having neck pain and an occasional ear ache. He seems to be somewhat clueless to my condition and it scares me. Can anyone shed any light for me.

Thank you in advance for any insight.

 
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Old 08-23-2009, 04:40 AM   #2
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Re: Hyperthyroid-PTU Question

I took ptu's for a year without any problem, there are a lot of people on this board who have been taking them for years. I was never prescribed beta blockers, once the meds kicked in the palps subsided. You really do need to see someone who knows what they're doing. I'm afraid it does sound like your Doctor is clueless about thyroid issues. Normally a radioactive uptake scan is performed to help in the diagnosis first up. My GP treated me by making calls to an Endo to get advice while I was there and faxed him all my results until I could get into see him. Mine was a simple case of Graves disease with a normal sized thyroid, yours sounds (but may not be) more complicated. I don't know how things work there but here (Australia) the GP can call the Specialist and ask for an urgent appointment and they always fit you in. I would really push to see the Endo sooner, October is too far away, you need to be diagnosed and treated correctly now. I don't mean to frighten you but you are at a lot less risk of liver problems from the meds than you are of the disease itself. I hope someone else with much more knowledge than me responds to your post. Good luck.

 
Old 08-23-2009, 08:58 AM   #3
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Re: Hyperthyroid-PTU Question

Thank you for your reply..Let me add a few details I neglected too in my original post. I began having symptoms of a thyroid disorder a few months prior to my nodule becoming evident... The first thing I noticed was my skin, and hair were drying out.. and I was going between having severe constipation to having loose bowels every week. I then began having unexplained memory lapses, insomnia and waves of panic wash over me for absolutely no reason..but as I stated in my earlier post I am prone to anxiety attacks so I didn't attribute to another condition at the time. I own a catering business so I work long hours so the complete exhaustion and the muscle weakness...crankiness and such I attributed to being overworked. Then one night a few weeks prior I began to sweat in the cold not exerting myself at all...the skin on my ankles and elbows became like snake skin..I was scratching myself raw. I have had eczema all my life also ( only in the summer though) so I attributed another warning sign to something else. I then began to realize I was gaining weight not a great deal but my clothes were starting to fit me differently...my hair starting falling out and my eyebrows basically just stopped growing. I then began to notice I was getting out of breath doing next to nothing..I couldn't climb stairs anymore without feeling like I was going to keel over and my heart was skipping beats almost continually..since I am asthmatic and take daily meds for it I attributed it to that(even though my meds never did this to me before). I believe the last straw for me was waking up one night with my heart pounding out of my chest and sweating profusely...it took me a good deal of time that night to calm myself down. I had several other nights( prior to the PTU) that I woke up like that but to lesser extents. I'm sure there are other symptoms that I am forgetting but this post is already getting long ..LOL...Now when I finally did go to the doctor in February he did send me for the complete blood work and for an EKG and an echocardiogram( EKG and Echo were normal)...I began taking the PTU that day and had been on it about 4 days before I had a chance to get my blood work done. I went back a week later and that's when he told me that my thyroid levels came back normal..as was the rest of my blood work. My blood pressure and cholesterol are also normal. It was then he determined that I had hyper-T and said we would just watch everything and I was to see him again in 3 months. Once I was on the PTU for about 2 weeks all my symptoms started subsiding..the palps become much less noticeable and I felt not back to my old self but improved. My(left) nodule for some strange reason would always go up and down so I just left it alone...it wasn't really bothering me. Then in late July I realized that it was starting to migrate over the front of my neck in front of my windpipe and there was a small nodule on my right side and they were all connected...That's when I went back to my PCP again. There are days when it hardly noticeable to days where it looks like a boulder in my neck. I am self-employed and the medical coverage that I have is managed care.. I have 2 endos in my network within a 200 mile radius that are both fully booked up. I am on a waiting list for both but my set appointment is for Oct 2. I'm sorry this is so long but it felt good to write it out. I've tried to educate myself as much as possible but there are times when I just sit here feeling helpless. This seems to be a wonderful forum, I have read a great deal since yesterday...It's nice to know I'm not alone.

Last edited by PattyG67; 08-23-2009 at 09:00 AM.

 
Old 08-23-2009, 09:19 AM   #4
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Re: Hyperthyroid-PTU Question

I am not hyper myself; am hypo but have read a lot about both disorders. I can tell you that there is another drug called methimazole (Tapazole is a brand).

The risk of liver damage from antithyroid drugs is proportional to the dose, so if your MD knows anything about dosing, you should be ok. It does sound like he doesn't know, though, so be careful. He should be measuring your free T4 and free T3, not just your TSH. Do you have any results of those tests? Your dose will be dependent on how high the free Ts are. You also should have had a test for TSI antibodies, to see whether your hyper is being caused by Graves' disease.

Get yourself a copy of Thyroid for Dummies. It will help you understand the basics of thyroid function/dysfunction and all your treatment options. It will also help you have an educated conversation with the endo when you see him.

Antithyroid drugs can be taken for very long periods of time, providing the MD prescribing them knows what the heck they're doing... Something that's rarer than one would think.

 
Old 08-23-2009, 12:18 PM   #5
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Re: Hyperthyroid-PTU Question

Quote:
Originally Posted by midwest1 View Post
I am not hyper myself; am hypo but have read a lot about both disorders. I can tell you that there is another drug called methimazole (Tapazole is a brand).

The risk of liver damage from antithyroid drugs is proportional to the dose, so if your MD knows anything about dosing, you should be ok. It does sound like he doesn't know, though, so be careful. He should be measuring your free T4 and free T3, not just your TSH. Do you have any results of those tests? Your dose will be dependent on how high the free Ts are. You also should have had a test for TSI antibodies, to see whether your hyper is being caused by Graves' disease.

Get yourself a copy of Thyroid for Dummies. It will help you understand the basics of thyroid function/dysfunction and all your treatment options. It will also help you have an educated conversation with the endo when you see him.

Antithyroid drugs can be taken for very long periods of time, providing the MD prescribing them knows what the heck they're doing... Something that's rarer than one would think.
I did question the doctor regarding Graves and inquired if I could be tested for it. He very quickly said "Graves is viral forget about it". I will be bringing the issue up again when I finally get to the endo as my symptoms seem to fit the mold.

Thank you for your reply

 
Old 08-23-2009, 01:17 PM   #6
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Re: Hyperthyroid-PTU Question

Quote:
Originally Posted by PattyG67 View Post
I did question the doctor regarding Graves and inquired if I could be tested for it. He very quickly said "Graves is viral forget about it".
This guy is dumber than I thought possible. Graves' is an autoimmune disease.

If you are able to get yourself to a doctor's office at a moment's notice, call the endo and ask if they keep a cancellation list. They will notify you when they get a cancellation/open spot in their schedule. Sometimes that'll get you in weeks earlier than normal. You need to see another MD about this. Yours is a thyroid idiot... No kidding.

 
Old 08-23-2009, 03:35 PM   #7
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Re: Hyperthyroid-PTU Question

Quote:
Originally Posted by midwest1 View Post
This guy is dumber than I thought possible. Graves' is an autoimmune disease.

If you are able to get yourself to a doctor's office at a moment's notice, call the endo and ask if they keep a cancellation list. They will notify you when they get a cancellation/open spot in their schedule. Sometimes that'll get you in weeks earlier than normal. You need to see another MD about this. Yours is a thyroid idiot... No kidding.
I'm already on the waiting list for 2 endos..I check in with both doctors weekly.My PCP also had me stop all consumption of iodine. I've never been a seafood eater so that wasn't difficult. I haven't used iodized table salt in over 2 years ( using kosher or sea salt). He thought that may help to shrink my goiter...but since I really wasn't using it anyway it was no help. I do find that they are certain meals that will give me what I call a thyroid rush after I eat them. I don't know if that is common amongst other people on here. I'm basically living off of plain white meat chicken breast and salad. I will do anything to avoid that panic feeling from washing over me. I only have one other PCP that is available in my area with my coverage, he's older than water..LOL so I don't think he's a better option either.

Thank you again for your reply.

Last edited by PattyG67; 08-23-2009 at 03:37 PM.

 
Old 08-23-2009, 06:08 PM   #8
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Re: Hyperthyroid-PTU Question

Midwest is right, patty, and it definitely sounds like Hashimoto's Disease, which is autoimmune thyroid disease that eventually leads to hypothyroidism. (I have this and your symptoms sound exactly like mine before was diagnosed) What is occuring right now is your immune system is attacking your thyroid gland and it is fighting back by overproducing thyroid hormone, this lowered your TSH and then the dr diagnosed you hyperthyroid, hence you were put on an antithyroid drug PTU (the same thing happened to me back in '05, it was a big mistake) Another time your TSH will be normal, and then another time it will start rising above normal ranges. In Hashimoto's your labs swing from hyper to hypo to euro (meaning eurothyroid, when your thyrois labs look normal) until your gland loses all function (usually its all but everyone is different, a lot of folks just lose partial fucntion), hence you will need thyroid hormone replacement drugs and usually for life.
You need to be seen immediately, not that it is life-threatening but i can sure relate to how you feel right now because i've been through it!

 
Old 08-23-2009, 07:37 PM   #9
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Re: Hyperthyroid-PTU Question

Thank you all so much for taking the effort to respond!! Since I'm in such a bad situation in regards to seeing a specialist..I'm not sure what to do. If you folks are correct and I hypo not hyper...I'm making my condition worse by taking the PTU and suppressing my thyroid function even more..hence my goiter becoming larger. I may just head to the ER and maybe they will do more of an extensive work up than I've had. It's funny though as I stated earlier, the PTU did make a lot of my symptoms subside for a time and it definitely helped with the palps. I've always felt as though I've had something else although. One week I would be constipated and feel like I couldn't relax and then there are some weeks when I can't stop running to the bathroom and I'm exhausted and falling asleep at the drop of a hat. I simply hate not knowing what to do. I do know that this goiter is growing larger and it's starting to bother me on a daily basis, but all I get from my PCP is that I have to see an endo..he can't do anymore for me. I'm very glad I found this forum, thank you folks again for your input!!

 
Old 08-23-2009, 09:22 PM   #10
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Re: Hyperthyroid-PTU Question

Quote:
Originally Posted by PattyG67 View Post
Thank you all so much for taking the effort to respond!! Since I'm in such a bad situation in regards to seeing a specialist..I'm not sure what to do. If you folks are correct and I hypo not hyper...I'm making my condition worse by taking the PTU and suppressing my thyroid function even more..hence my goiter becoming larger. I may just head to the ER and maybe they will do more of an extensive work up than I've had. It's funny though as I stated earlier, the PTU did make a lot of my symptoms subside for a time and it definitely helped with the palps. I've always felt as though I've had something else although. One week I would be constipated and feel like I couldn't relax and then there are some weeks when I can't stop running to the bathroom and I'm exhausted and falling asleep at the drop of a hat. I simply hate not knowing what to do. I do know that this goiter is growing larger and it's starting to bother me on a daily basis, but all I get from my PCP is that I have to see an endo..he can't do anymore for me. I'm very glad I found this forum, thank you folks again for your input!!
I was on Tapazole (similar to PTU) when the first endo i ever started seeing (4 years ago) mistakenly diagnosed me with Hyper thyroidism and it made me feel super initially, but at the same time my thyroid was being destroyed by antibodies and it was a little over a month later that i started going hypo, the Tapazole just hastened the process and i nearly relapsed, TSH zoomed up to 11, i couldn't work for a week because i was disconnected from doing normal things.
And ER visits for me? Over the past several years i lost count!

 
Old 08-23-2009, 10:05 PM   #11
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Re: Hyperthyroid-PTU Question

I would not say you sound hypo. There's little evidence from what you say that this is Hashimoto's disease. Although symptoms of hypo and hyperT can cross lines and often blur, the sweatiness, heart pounding, and overwhelming anxiety sound more like hyper. The fact that you got some relief from the PTU is even more evidence that you're hyper.

Do you have any lab results to share? TSH? T4 or T3? That would help us to interpret the situation better.

You need the tests I mentioned before in order to know what you're dealing with. Once those are done, it would also be helpful to get an iodine uptake scan and an ultrasound to check on that goiter.

'Managed care' really stinks. Try to hang in there despite that dolt of a doc. Hopefully you'll get your appt sooner and the endo will know what he's doing.

Last edited by midwest1; 08-23-2009 at 10:08 PM.

 
Old 08-24-2009, 12:26 AM   #12
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Re: Hyperthyroid-PTU Question

I wouldn't waste anymore time with your clueless Doctor. I think I'd be going to the ER, I'm sure a Med Student would know more. I can't believe he thinks Graves is viral, that is so basic, I knew it was AI before I got it and I don't have any medical training. I agree you should educate yourself. I think, and I stand to be corrected, that PTU is the name of the family of drugs to treat hyper. I was taking neo-mercazole which I assume was a PTU. If you can educate yourself sufficiently you should be able to work out your own dosage. I would never normally advise anyone to do that but under the circumstances I expect you could do a better job than that idiot doctor. I'm glad others have joined this discussion and I hope you get the help you need soon.

 
Old 08-26-2009, 07:50 AM   #13
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Re: Hyperthyroid-PTU Question

I was dx with Grave's when I was pg in 2005.. I began PTU 1/2007 and was on it for 2.5 years. Finally they did an uptake scan ( they would have sooner but I was nursing the baby) and ultrasound and I was up to 4 nodules on the right lobe, 3 on the left plus a huge cyst.. They could see several tiny nodules as well. I was dx at the point, in addition to graves, a toxic multinodular goiter. That was on a wednesday.. they had me in to see a surgeon that following tuesday, and I went straight to surgery that very Friday for a total thyroidectomy. When it gets this bad, this is pretty much the option you are looking at.

Fast fwd 6 weeks later to today, I am feeling MUCH MUCH MUCH better.. the palpitations are pretty much nonexistent and my heartbeat has returned to normal. I am now tired as we find the right dosage of meds, but I will take this ANYDAY compared to how I felt before! The meds weren't even effectively treating me anymore. The bulging neck, anxiety,racing thoughts, irregular heartbeat and insomnia was pure torture and it's been a huge relief to not be suffering with these symptoms any longer.

Good luck to you.. please keep us updated.
__________________
Dx Grave's 10/2005 (High TSI level)
PTU Meds started 1/2007
Dx Toxic multinodular goiter 7/2009
Total Thyroidectomy 7/10/2009 (Benign)

 
Old 08-30-2009, 06:57 PM   #14
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Re: Hyperthyroid-PTU Question

Thank you to all that responded. I've had a few really bad days and couldn't concentrate enough to write coherently. These are the days I absolutely hate...constant rushes, panic attacks, and just an over all feeling of helplessness. I was getting out of breath by merely walking. I have decided to go to the ER tomorrow. I just can't handle it anymore. I'm hoping that they can help me until I can get into an endo. I have a few questions that I hope some fellow suffers can help me with.... Does anyone else have a diminished libido? I have no interest in sex at all...even when I'm having a good day. Also, does anyone have some remedies for constipation? I've tried fiber, stool softeners, enemas, roughage, extra water..you name it, I've tried it. I'm really suffering with this. One other thing...I had my eyebrows waxed nearly 7 weeks ago..and not ONE hair has grown back. I usually have to have them done every two weeks. Has this happened to anyone else?


Thank you all again for your continued support!!!

 
Old 08-30-2009, 11:53 PM   #15
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Re: Hyperthyroid-PTU Question

I'm sorry I can't help with your other questions, I was having BMs everytime I ate while Hyper and my libido has always been low. The Graves didn't cause me to lose hair but the neo-mercazole did. I do have alternating IBS though and I find benefiber to be the best solution for that. Metamucil made it worse so I wouldn't recommend that. Keep us updated on how you're going when you feel up to it. Cheers Viv.

 
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