I Hate Dialysis Message Board

Off-Topic => Other Severe Medical Conditions => Topic started by: Epoman on August 23, 2005, 07:02:58 PM

Title: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on August 23, 2005, 07:02:58 PM
I had my Para-Thyroids removed and when they went in they found a lump on one side of my thyroid so they removed that side (lobe)  But they could only find 3 of my para-thyroids. So my PTH was still 3,000+ (Which is why I am in a wheelchair). Also the lump they found was tested for cancer and yeap it was thyroid cancer :-[ So they had to go back in to find the other remaining para-thyroid(s) and remove my other thyroid (the other side of the thyroid) And by doing so they cut one of my vocal cords >:( Thus making it hard for me to speak. I can talk but if I turn my head to the left my voice is very horse and low. But the good thing is they found the remaining para-thyroid it was the size of a golfball :o when it should be the size of a grain of rice. So after the surgery my PTH dropped to below 50 from 3,000+ what a drop huh? But the damage was already done to my bones. So now I take thyroid meds (Thyroid removed due to cancer) and it was a bitch for the first year to find the right dosage. I had ups and downs it was a very tough year. It's amazing how much the thyroid controls.
Title: Intra-thyroid parathyroid
Post by: LifeOnHold on August 23, 2005, 07:55:31 PM
Wow!  You've been through the ringer with the parathroids! :(

I had one parathyroid inside the left lobe of my thyroid, so it was removed.  I am supposed to be taking Levoxyl but I quit it after a year because there was no change in my thyroid levels.  They think I might be losing thyroid hormone through the dialyzer-- which isn't "supposed" to happen, but then again I wasn't "supposed" to get hypoglycemia after my treatments, either, and I do.

They ended up carving about a pound of tissue out of my throat with the parathyroid removals... I was scared that it would screw up my singing voice (I'm a fan of karaoke).  If anything, my voice has improved-- one good thing from the surgery, anyway.  I have a pretty noticeable scar across my neck, which makes me look tough :)
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Rerun on September 18, 2005, 09:07:24 AM
They have threatened to take out my para- >:(thyroids several times and when they go do one last check.... it will be normal.  So, I've lucked out so far.  My PTH is 650 and the dietitian is giving me something at dialysis to bring that down. 

Epoman....  why would a thyroid problem put you in a wheel chair.  (Add this to your dumb questions list)  Darla~ :(
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on September 18, 2005, 10:49:28 PM
They have threatened to take out my para- >:(thyroids several times and when they go do one last check.... it will be normal.  So, I've lucked out so far.  My PTH is 650 and the dietitian is giving me something at dialysis to bring that down. 

Epoman....  why would a thyroid problem put you in a wheel chair.  (Add this to your dumb questions list)  Darla~ :(


My PTH was 3,000+ at that level ALL the calcium was pulled from my bones making my bones very brittle, I fell and when I did I broke my hip. A week later I twisted the wrong way and broke my other hip. Well 5 years later I am still waiting for my bones to heal.  :'( You may ask why not get a couple of artificial hips? Well my bones are so bad a hip stem being put in might cause more problems i.e. brakes in different places. So you better take care or your Phosphorus and Calcium levels and get your Ca.times Ph.product low so they can give you Calcijex or other vitamin D drug to keep your PTH low so your bones can stay healthy. BECAUSE BELIEVE ME BEING IN A WHEELCHAIR SUCKS LIKE A MOFO.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Rerun on September 19, 2005, 09:48:12 PM
Thank you for the explanation and the advice.  :)
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Gus on June 08, 2006, 07:12:24 PM
I had my Para-Thyroids removed and when they went in they found a lump on one side of my thyroid so they removed that side (lobe)  But they could only find 3 of my para-thyroids. So my PTH was still 3,000+ (Which is why I am in a wheelchair). Also the lump they found was tested for cancer and yeap it was thyroid cancer :-[ So they had to go back in to find the other remaining para-thyroid(s) and remove my other thyroid (the other side of the thyroid) And by doing so they cut one of my vocal cords >:( Thus making it hard for me to speak. I can talk but if I turn my head to the left my voice is very horse and low. But the good thing is they found the remaining para-thyroid it was the size of a golfball :o when it should be the size of a grain of rice. So after the surgery my PTH dropped to below 50 from 3,000+ what a drop huh? But the damage was already done to my bones. So now I take thyroid meds (Thyroid removed due to cancer) and it was a bitch for the first year to find the right dosage. I had ups and downs it was a very tough year. It's amazing how much the thyroid controls.


That's strange, went through same ordeal as you did..........parathyroid surgery for me also led to the removal of my thyroid as well.....they stated that they found cancerous lymph node....am taking levoxyl.....To maintain calcium I also take 5K TUMS each day.......
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Epoman on June 08, 2006, 07:26:33 PM
I had my Para-Thyroids removed and when they went in they found a lump on one side of my thyroid so they removed that side (lobe)  But they could only find 3 of my para-thyroids. So my PTH was still 3,000+ (Which is why I am in a wheelchair). Also the lump they found was tested for cancer and yeap it was thyroid cancer :-[ So they had to go back in to find the other remaining para-thyroid(s) and remove my other thyroid (the other side of the thyroid) And by doing so they cut one of my vocal cords >:( Thus making it hard for me to speak. I can talk but if I turn my head to the left my voice is very horse and low. But the good thing is they found the remaining para-thyroid it was the size of a golfball :o when it should be the size of a grain of rice. So after the surgery my PTH dropped to below 50 from 3,000+ what a drop huh? But the damage was already done to my bones. So now I take thyroid meds (Thyroid removed due to cancer) and it was a bitch for the first year to find the right dosage. I had ups and downs it was a very tough year. It's amazing how much the thyroid controls.


That's strange, went through same ordeal as you did..........parathyroid surgery for me also led to the removal of my thyroid as well.....they stated that they found cancerous lymph node....am taking levoxyl.....To maintain calcium I also take 5K TUMS each day.......

You take 5,000 tums a day WOW that's a lot of pills  ;)  ;D




Just kidding, I know what you meant.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: kevno on June 09, 2006, 09:32:18 AM
I had a fall in 1990 broke both knees took over four years to walk properly again, had my Para-thyroids out, they found all four of them. They are meant to be the size of a grain of rice. Mine where the size of peas. So they took 3 and three quarters out. On the X-ray I was told that you could see through my hips. The Surgeon was talking about all different operations I needed. A wheelchair was wheeled round but I refused to get in it. So I went in the Hydro pool twice a week for four years. On a zimmer frame for about 6months, two elbow crutches for about two years. then one walking stick. But after they took the para-thyroids out my bones began to grow back to near normal. Now back on one stick because of calcification of the lower leg.

Sorry I forgot. No I do not take thyroid repacement meds.

Kevno
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on June 09, 2006, 02:11:45 PM
I had a fall in 1990 broke both knees took over four years to walk properly again, had my Para-thyroids out, they found all four of them. They are meant to be the size of a grain of rice. Mine where the size of peas. So they took 3 and three quarters out. On the X-ray I was told that you could see through my hips. The Surgeon was talking about all different operations I needed. A wheelchair was wheeled round but I refused to get in it. So I went in the Hydro pool twice a week for four years. On a zimmer frame for about 6months, two elbow crutches for about two years. then one walking stick. But after they took the para-thyroids out my bones began to grow back to near normal. Now back on one stick because of calcification of the lower leg.

Sorry I forgot. No I do not take thyroid repacement meds.

Kevno

A person only needs Thyroid meds if they had their Thyroid out not just their para's out.

- Epoman
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Panda_9 on June 09, 2006, 05:14:35 PM
My PTH is sitting at 500, doesn't seem to be doing much. I think most others on nocturnal don't need any meds to bring it down, so not sure whats happening with mine  :-\
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: shay_pcb on January 10, 2007, 01:03:46 PM
I had a thyroid storm 3 years ago and had Radio-Iodine Therapy to shut down my thyroids completely. The thyroids definitely control a lot of things in your body. When I had the thyroid storm, I lost about 15-20 lbs., even though I was CONSTANTLY eating. I only weighed 95 lbs., and I really was eating ALL the time. I would eat 2 breakfasts, snack during my classes, eat 2 lunches, snack during my last class and on the bus ride home, and then I'd eat the rest of the night at home. I would eat an entire bag of chips, then eat dinner, and just whatever I could find. My mom brought me to buffets a lot then!!  ;D

Anyway, I am on a thyroid replacement hormone now. I stay at 100 mcg, and I get labs done once a month for that. If you read my other posts, I am also on dialysis, and I have a huge bloodclot in my leg that almost reaches my heart. I was also hypoglycemic when I was younger and went into 4 comas bc of it.

Shannon
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Sara on January 12, 2007, 04:51:55 PM

A person only needs Thyroid meds if they had their Thyroid out not just their para's out.

Joe takes Synthroid because he is hypothyroid and he still has all his thyroid parts.   ;)
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on January 12, 2007, 05:16:45 PM

A person only needs Thyroid meds if they had their Thyroid out not just their para's out.

Joe takes Synthroid because he is hypothyroid and he still has all his thyroid parts.   ;)

Wow it only took you 6 months to come up with that one.

Let me rephrase that...Shall I?

USUALLY a person only needs Thyroid meds if they had their Thyroid out not just their para's out, or if they have a Thyriod problem.

I look forward to your reply in 6 months.  ::)

- Epoman
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Sara on January 12, 2007, 08:22:57 PM

A person only needs Thyroid meds if they had their Thyroid out not just their para's out.

Joe takes Synthroid because he is hypothyroid and he still has all his thyroid parts.   ;)

Wow it only took you 6 months to come up with that one.

Let me rephrase that...Shall I?

USUALLY a person only needs Thyroid meds if they had their Thyroid out not just their para's out, or if they have a Thyriod problem.

I look forward to your reply in 6 months.  ::)

- Epoman

Where's that "Bite me" emoticon??  ::) 
Besides, don't get snappy with me just cuz you didn't word your post accurately.   ::)
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on January 12, 2007, 10:16:30 PM

A person only needs Thyroid meds if they had their Thyroid out not just their para's out.

Joe takes Synthroid because he is hypothyroid and he still has all his thyroid parts.   ;)

Wow it only took you 6 months to come up with that one.

Let me rephrase that...Shall I?

USUALLY a person only needs Thyroid meds if they had their Thyroid out not just their para's out, or if they have a Thyriod problem.

I look forward to your reply in 6 months.  ::)

- Epoman

Where's that "Bite me" emoticon??  ::) 
Besides, don't get snappy with me just cuz you didn't word your post accurately.   ::)

I wasn't getting snappy with you, if I was going to get snappy about anything it would be for you not finishing up the "2006 Secret Santa" thread. Your last reply was:

"If you have time, can you do it?  I have some stuff I'm working on and I believe you said you were able to create some sort of attachment with it that I don't know how to do"

Which is fine, I had a shortcut to help you out, but you were also supposed to follow up with everyone, according to this reply:

"Just an FYI, on Jan 1, I will start checking with people to see if they have received their gifts yet.  So, when it gets to be Jan 1 and you haven't received a gift, please let me know.  Thanks."

I had to make the post about who didn't receive their items. When you should have, after all this was your project. You started it, you should finish it. Are you going to finish it? You did a great job to start it but it needs to followed through until the end.

Oh and feel free to bump any other 6 month old thread.

Now that's getting snappy.  ::)

- Epoman
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Sara on January 13, 2007, 06:20:05 AM
1. What does that have to do with thyroid replacement meds?
2. Why couldn't you address that with me in private?
3. I had already followed up with some people, which is how I was able to tell you that mcjane and anja had not received their presents.

As far as you having to make a post about who didn't receive their items - **I** was waiting until Rerun got back to see if she could contact some of the missing people, before publicly embarassing them over this.  For all we know, they died or are in the hospital. 

I am really, really sorry that me dealing with some personal and PRIORITY stuff at home is apparently not acceptable to you.  But wow, thanks for saying I did a great job starting the exchange off.  I'm glad that met your approval.   ::)
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Sara on January 13, 2007, 06:22:27 AM
Oh and feel free to bump any other 6 month old thread.


I wasn't aware we weren't supposed to reply to a thread over a certain age.  You might want to post that in the Rules.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Black on January 13, 2007, 09:03:58 AM
If I may get in here, in the middle of this "Abbot and Costello" routine -- and I hope I don't turn it into the "Three Stooges".  ;D

I'm not on dialysis.  I had a partial thyroidectomy in the early to mid '80's -- can't remember exactly when.  I was on synthetic thyroid replacement, T4 only, for most of the years since then, and it did not work except to make my TSH look normal.

I've been on natural thyroid replacement, Armour, which contains T4, T3, T2, T1, and calcitonin, for almost a year.  If I am ever told I have to switch back to the synthetic, I will buy black market Armour if I have to, in order to stay on it.  I really believe it saved my life and I would have died in less than 5 years if I had not made the switch.

My advice to everyone on synthetic T4 -- find a doctor who routinely prescribes the natural and make the switch.  Even if the synthetic T4 is working now, eventually it most likely will not.  Most of the doctors who have been in practice since the synthetic was introduced do not know how to prescribe the natural and can cause serious health problems for their patients due to their ignorance.  Not taking the natural can cause worse problems and can eventually cause death, usually due to heart arrhythmia, valve problems, and eventually congestive heart failure.

Check out

http://health.groups.yahoo.com/group/NaturalThyroidHormones

and  (addresses corrected! Thanks, Angie)

http://www.stopthethyroidmadness.com

It took me a year to figure out that these people know what they're taliking about.  There is no substitute for natural thyroid hormone and the doctors who prescribe it for their patients are saving lives.  The one who don't are killing some of their patients with their ignorance and condemning them to a living hell on the way to their death.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: kitkatz on January 13, 2007, 09:20:43 AM
I feel so much better without the parathyroids running around in my system.  Food has a taste again and the sex drive came back. Explain that one if you can!
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: angieskidney on January 13, 2007, 10:13:33 AM
Great post black!!

Check out

health.groups.yahoo.com/group/NaturalThyroidHormones (http://health.groups.yahoo.com/group/NaturalThyroidHormones)

and

stopthethyroidmaddness.com (http://www.stopthethyroidmadness.com/)

By the way, make sure you put the www. infront of the last link or you will end up at some search site instead. http://www.stopthethyroidmadness.com/
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on January 13, 2007, 10:42:47 AM
1. What does that have to do with thyroid replacement meds?
2. Why couldn't you address that with me in private?
3. I had already followed up with some people, which is how I was able to tell you that mcjane and anja had not received their presents.

As far as you having to make a post about who didn't receive their items - **I** was waiting until Rerun got back to see if she could contact some of the missing people, before publicly embarassing them over this.  For all we know, they died or are in the hospital. 

I am really, really sorry that me dealing with some personal and PRIORITY stuff at home is apparently not acceptable to you.  But wow, thanks for saying I did a great job starting the exchange off.  I'm glad that met your approval.   ::)

1. It has nothing to do with thyroid meds, but you said don't get "snappy with you and bite me" and I wasn't in the first place, I was just messing around with you. SO I did get snappy.
2. Well I guess the same can be said with you, no? "Where's that "Bite me" emoticon?? Besides, don't get snappy with me just cuz you didn't word your post accurately."  You want to be a smart ass, well so can I.
3. Well "some" is not everyone, is it.

Please don't use Rerun as an excuse, she has been back for SEVERAL days now, also do you really think only Rerun has access to the contact list? Every admin and mod has access to that info. Did you not think the owner of the site would not have that info as well?

It's not about embarrassing people, if they are in the hospital or died we will be sad and unfortunately. However it is also sad and unfortunate that members took the time, energy, and money to send a gift but received nothing in return.

If you were going through something personal all you had to do was send a PM to ANYONE on the admin team and ask them if they can take over because you are dealing with some personal issues right now, and we would have handled it no questions asked. Instead of ignoring the situation. And I am glad you are glad that you met my approval, because I must APPROVE all things such as this that take place on IHD.

- Epoman
Owner/Admin
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Black on January 13, 2007, 11:25:58 AM
Thanks, Angie.  I went back and corrected them.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Sara on January 13, 2007, 11:36:21 AM
Epo, I am going to drop this now, because I really don't feel it is appropriate to continue this on the public board, and I really don't appreciate the attitude that you have exhibited towards me in this thread.   :(  You need to learn how to talk to people. 
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Epoman on January 13, 2007, 05:25:00 PM
Epo, I am going to drop this now, because I really don't feel it is appropriate to continue this on the public board, and I really don't appreciate the attitude that you have exhibited towards me in this thread.   :(  You need to learn how to talk to people. 

Good choice. I speak the way I see it, and the way I feel. If you remember right all I said at first was: Wow it only took you 6 months to come up with that one. and you are the one who was disrespectful first and said: Where's that "Bite me" emoticon??   
Besides, don't get snappy with me just cuz you didn't word your post accurately.
You don't feel it's appropriate to continue this discussion in a public board, yet you have no problem telling the "Owner/Admin" bite me? I may need to need to learn how to talk to people but you need to learn some respect.
 
Now do you really want to drop it or will you reply one again time to get the last word in?

- Epoman
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: RichardMEL on January 14, 2007, 06:20:11 PM
uh, trying to get this back on topic.

Last month my PTH was at 13.4 (I guess that is 134 for most of you?!) and this month it shot up to 19.0 (190). Is this kind of (~50%) increase in a month normal? I am concerned they will want to rush me into surgery, given that one doc wanted to do it "soon" when it was at 13.4 but my full time doc overrode that and said it wasn't so bad yet. Now that it has shot up so much (they have only been monitoring the PTH for 2 months now) I am concerned. My calcium can't seem to come down either (2.72 last, 2.74 this) despite changing medications, reducing caltrate etc.

Any comments welcome
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Zach on January 14, 2007, 06:45:42 PM
uh, trying to get this back on topic.

Last month my PTH was at 13.4 (I guess that is 134 for most of you?!) and this month it shot up to 19.0 (190). Is this kind of (~50%) increase in a month normal? I am concerned they will want to rush me into surgery, given that one doc wanted to do it "soon" when it was at 13.4 but my full time doc overrode that and said it wasn't so bad yet. Now that it has shot up so much (they have only been monitoring the PTH for 2 months now) I am concerned. My calcium can't seem to come down either (2.72 last, 2.74 this) despite changing medications, reducing caltrate etc.

Any comments welcome

Your PTH numbers seem higher, but within the acceptable range for dialysis patients.  But it all depends on the type (Intact PTH) of lab tests involved.  To lower your calcium, you may need a reduced calcium dialysate bath.

Just some information from the National (U.S.) Kidney Foundation.

http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide8B.htm

GUIDELINE 8B. VITAMIN D THERAPY IN PATIENTS ON DIALYSIS (CKD STAGE 5)
Patients treated with hemodialysis or peritoneal dialysis with serum levels of intact PTH levels >300 pg/mL (33.0 pmol/L) should receive an active vitamin D sterol (such as calcitriol, alfacalcidol, paricalcitol, or doxercalciferol; see Table 28) to reduce the serum levels of PTH to a target range of 150 to 300 pg/mL (16.5 to 33.0 pmol/L).


Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: RichardMEL on January 14, 2007, 06:50:40 PM
Thanks Zach. I am on Calcitricol as it is (2x/week) and they took me OFF the low calcium bath (it lowered me to around 2.59 when I was on it) because supposedly that bath leads to higher PTH?!!.

*sighs*

Thanks for the info! :)
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: kitt on January 31, 2007, 05:25:51 PM
Hello all
i have Renal Disease and i have severe sweating i throught it was my thyroid had test done and it all came back normal but they did not check my parathyroid, my calcium is in normal also. Should i  have my PTH check out and if so what should i expect?  I also have high HCG levels and i am not pregnant, that is what made me seek thyroid test. Any advise would be appriceated. Thanks Kitt from N.J.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Black on January 31, 2007, 07:47:33 PM
Hello all
... i thought it was my thyroid had test done and it all came back normal ...

Exactly what did they check?  If only the TSH (which is a pituitary hormone) was checked, then you don't really know if your thyroid is working or not.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Krisna on October 22, 2007, 08:04:59 PM
I had my parathyroids removed and part of one placed in my left arm when I was 15 (1987).  I've had problems with low calcium ever since but tests always show my PTH is okay.

I've been on Levothyroxine for my thyroid since early 2003.  My thyroid problem is directly related to my kidney disease and all the meds I've had to take over the years.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Black on October 23, 2007, 05:24:16 PM
...  I've been on Levothyroxine for my thyroid since early 2003.  My thyroid problem is directly related to my kidney disease and all the meds I've had to take over the years.

Check out www.stopthethyroidmadness.com

I switched from the synthetic thyroid replacement, which did nothing except make my TSH go down, to the natural and have improved a great deal and finally stated losing weight.  If I had stayed on the synthetic I doubt I would have lived another 5 years.  The hypothyroid symptoms were awful and I was very slowly dying, while the doc kept saying, "Your blood tests are normal and show you are fine."    >:(  :P  New doc did many more tests and prescribed Armour Natural thyroid -- saved my life.  :2thumbsup;
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Krisna on October 23, 2007, 05:57:07 PM
...  I've been on Levothyroxine for my thyroid since early 2003.  My thyroid problem is directly related to my kidney disease and all the meds I've had to take over the years.

Check out www.stopthethyroidmadness.com

I switched from the synthetic thyroid replacement, which did nothing except make my TSH go down, to the natural and have improved a great deal and finally stated losing weight.  If I had stayed on the synthetic I doubt I would have lived another 5 years.  The hypothyroid symptoms were awful and I was very slowly dying, while the doc kept saying, "Your blood tests are normal and show you are fine."    >:(  :P  New doc did many more tests and prescribed Armour Natural thyroid -- saved my life.  :2thumbsup;

I'll check it out!  Thanks!  My levels show I'm okay and my doctor actually lowered the amount of thyroid medication a few months ago.  I'm still on prednisone too!  I've been on it so long that they can't take me off of it without my organs shutting down!  I've been on it since 1980!
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Black on November 09, 2007, 06:20:51 PM
...  I've been on Levothyroxine for my thyroid since early 2003.  My thyroid problem is directly related to my kidney disease and all the meds I've had to take over the years.

Check out www.stopthethyroidmadness.com

I switched from the synthetic thyroid replacement, which did nothing except make my TSH go down, to the natural and have improved a great deal and finally stated losing weight.  If I had stayed on the synthetic I doubt I would have lived another 5 years.  The hypothyroid symptoms were awful and I was very slowly dying, while the doc kept saying, "Your blood tests are normal and show you are fine."    >:(  :P  New doc did many more tests and prescribed Armour Natural thyroid -- saved my life.  :2thumbsup;

I'll check it out!  Thanks!  My levels show I'm okay and my doctor actually lowered the amount of thyroid medication a few months ago.  I'm still on prednisone too!  I've been on it so long that they can't take me off of it without my organs shutting down!  I've been on it since 1980!

Yeah, I'm on steroids as well - 5 mg AM and 5 mg noon, I can't function without them.  The years of untreated and undertreated hypothyroidism burned out my adrenals.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: paris on November 10, 2007, 10:04:29 AM
My daughter had a tumor on her thyroid and had most of the thyroid removed. She has been on synthroid since then.  Her doctor always says her range is normal but she really feels bad all the time, gained weight, extremely tired.  Everything we read says the "normal" range needs to be re-evaluated and adjusted, but her doctor (a specialist) just keeps saying she is in the normal range. Well, it must not be HER normal!   Your posts are very interesting  and helpful.  Keep posting--btw, we are finding a new doctor for her.  Someone has to listen to her. She is way too young to always feel so bad. 
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Black on November 10, 2007, 06:43:15 PM
My daughter had a tumor on her thyroid and had most of the thyroid removed. She has been on synthroid since then.  Her doctor always says her range is normal but she really feels bad all the time, gained weight, extremely tired.  Everything we read says the "normal" range needs to be re-evaluated and adjusted, but her doctor (a specialist) just keeps saying she is in the normal range. Well, it must not be HER normal!   Your posts are very interesting  and helpful.  Keep posting--btw, we are finding a new doctor for her.  Someone has to listen to her. She is way too young to always feel so bad. 

I  hope you find a new doc soon.  Most endocrinologists have been well indoctrinated by the synthetic drug manufacturers and are not conscientious about keeping up with the latest information.  The "normal" range for TSH was adjusted down in 2002 and yet most labs have not updated their software to reflect the new range and many endos aren't even aware that it has been changed.

From a press release by the American Association of Clinical Endocrinologists: "... Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range5 . Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now. ...

...  Thyroid Awareness Month is supported through an unrestricted grant from Abbott Laboratories. ..."

http://www.aace.com/newsroom/press/2003/index.php?r=20030118

Please check out the link I provided in my earlier post.  To let patients suffer the horrible effects of untreated and undertreated hypothyroidism because a pituitary hormone is within a "normal" range is outrageous, and an indication that many doctors care more about getting "good" labs than helping their patients.

Read up on myxedema and watch your daughter for the symptoms because it can be fatal.

http://www.emedicine.com/EMERG/topic280.htm
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: paris on November 10, 2007, 07:12:10 PM
Black, thank you so much!  I want Beth to read all your information, too.  I probably learned more from you than 5 years with her doctor. We are determined to find someone who will listen to her.  That is why I love everyone here - someone always comes to the aid and helps with answers :clap;   Again, thanks!
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: Black on November 10, 2007, 07:22:42 PM
You are most welcome and I agree about getting good help here when we can't get it from our docs.  If it weren't for people I met on-line Mike might be dead by now and he would definitely not be on the NxStage.  I thank God everyday for Epoman (Bill) and Gus, and depend on this group far more than I do any of Mike's medical professionals.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.
Post by: RichardMEL on November 11, 2007, 08:24:17 PM
Blah my PTH is up to 55 and my ALP is 288... the doc has done nothing all year and the dialysis unit staff are on at me about it.. so I emailed him to ask are we going to do something or what?

I'm seeing him in person in 2 weeks so I will find out more I think. There was a comment they might try Sensipar before they cut my throat (so to speak) so we'll see.
Title: Re: Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I d
Post by: Krisna on January 27, 2008, 08:47:46 PM
...  I've been on Levothyroxine for my thyroid since early 2003.  My thyroid problem is directly related to my kidney disease and all the meds I've had to take over the years.

Check out www.stopthethyroidmadness.com

I switched from the synthetic thyroid replacement, which did nothing except make my TSH go down, to the natural and have improved a great deal and finally stated losing weight.  If I had stayed on the synthetic I doubt I would have lived another 5 years.  The hypothyroid symptoms were awful and I was very slowly dying, while the doc kept saying, "Your blood tests are normal and show you are fine."    >:(  :P  New doc did many more tests and prescribed Armour Natural thyroid -- saved my life.  :2thumbsup;

I'll check it out!  Thanks!  My levels show I'm okay and my doctor actually lowered the amount of thyroid medication a few months ago.  I'm still on prednisone too!  I've been on it so long that they can't take me off of it without my organs shutting down!  I've been on it since 1980!

Yeah, I'm on steroids as well - 5 mg AM and 5 mg noon, I can't function without them.  The years of untreated and undertreated hypothyroidism burned out my adrenals.

My doctor switched me to hydrocortisone abt a month ago.  I take 10 mg at dinner time.  I can't stop taking steroids because I've been on it so long my body can't function without it!

He's researching the natural thyroid replacement meds.  He's one of the top Nephrologists in Seattle so I'm sure he'll do right by me!  He's kept me alive for the past 10 yrs.  I'll talk to him more abt it next month when I go to see him again.