Para-thyroid or thyroid problems - Do you take thyroid replacement meds? I do.

[Zach]

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).

[RichardMEL]

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!

[kitt]

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.

[Black]

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.

[Krisna]

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.

[Black]

...  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."        New doc did many more tests and prescribed Armour Natural thyroid -- saved my life. 

[Krisna]

...  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."        New doc did many more tests and prescribed Armour Natural thyroid -- saved my life. 

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!

[Black]

...  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."        New doc did many more tests and prescribed Armour Natural thyroid -- saved my life. 

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.

[paris]

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. 

[Black]

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

[paris]

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    Again, thanks!

[Black]

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.

[RichardMEL]

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.

[Krisna]

...  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."        New doc did many more tests and prescribed Armour Natural thyroid -- saved my life. 

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.