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Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/21/2009 5:54 PM (GMT -7)   
 
   Dear CP Family,
 
      I have posted this in the "thyroid Forum" aswell, but am posting it here to. As you all know, I will be going to "findings" appointments next week. If it turns out I have Hypoparathyroidism, and they do not know cause, I will suggest UNM / Mayo Clinic. If they still do not know anything, I will suggest UNM/ Mayo Clinic anyway.
 
  Maybe you guys can help, here is the post ~~>
 
  I have a "findings" appointments next Monday, Tuesday and Wednesday of next week. I would like to be atleast a little prepared if I am told I do indeed, have Hypoparathryroisim. My research has turned up very little as far as causes. I have never had any surgeries in the neck nor have I ever undergone chemotherapy. So far, most atricles mostly talk about the "2 major causes". Neither of which I have. They do state "other rare causes" but do not go into detail. A friend of mine was mentioning something called Addison Disease? I sure could use some help with research.
 
     I do, however, have a large range of issues starting with congenetial cataract (dont have diabetes), vision loss (black spots in both eyes now), weakeness, fatigue, wide spread joint pain, 1 day peroids, levoscoliosis (progressive with degeneration am only 5ft 5in was 5ft9 just 3yrs ago), all my teeth are gone now.... "crying" in throat, muscle spasims, tetany, diarreaha, kidney problems (more analysis is being done there), constant fever, memory loss, weight loss (i eat x5 per day  117=120lbs thou), hearing loss, uncontroled "jerking", insomnia, nerve damage.... theres more, but im kinda getting sad writing it all down.
 
      If you know of someone who has hypoparathyroidism without the 2 major causes, or know of where more information could be found, I would GREATLY appreciate it. I need to be prepared for next week, if it is, indeed, the culprit. The last few years have knocked me flat on my #2, all this has happened so fast. The damage is happing so fast....
 
     Thank you
      *huggs*
         dani

TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 274
   Posted 10/21/2009 6:01 PM (GMT -7)   

Hey Dani, my mom had this and they do not know the cause.  She had her parathyroid removed and years later they found a tumor on her addrenal gland and thought it was pheochromocytoma but they have ruled that out.  She has been symptom free since her surgery.

Melissa


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14417
   Posted 10/21/2009 7:01 PM (GMT -7)   
My brother has it and he has end stage renal disease. He needs a kidney, any one want to give one up? ;)

Joy
Health problems: sleep apnea, hypothyroidism, GERD, glaucoma, OA, environmental, food, and drug allergies, asthma, high cholesterol, pre-diabetic
Medications:Nexium 2X a day, 300mg Zantac, K-Dur, Lasix 2X a day, Zyrtec, Zocor, Lumigan, fish oil, B12, Substex, calcium + D, Advair, Albuteral, nebulizer
 
I don't suffer from insanity, I enjoy every minute of it!
 
 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/21/2009 7:22 PM (GMT -7)   
Awe Dani,
Sure hope the Mayo Clinic can help you, stay on top of it and hopefully you'll get your dx soon!
You know you'll be in my thoughts and prayers...
well wishes and lots of soft hugz
((((((((((((((((((((((((((((((((((((((((Dani))))))))))))))))))))))))))))))))))))))))))))))))))))))
Please keep us posted...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/21/2009 8:23 PM (GMT -7)   
Sending you lots of HUGS, Dani, it makes me cry just reading your thread, too much for one person to deal with. You are so positive in your threads despite it all, I don't know how you do it? You're a truely amazing person!
Please grizzle any time you need too, golitho

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 10/21/2009 8:30 PM (GMT -7)   
Hi Dani:

I wish I had some answers for you, but I do not. My family has a history of underactive thyroid, and it sounds like they think yours is overactive? I just wanted to say that my thoughts and prayers are with you. I pray that you finally get a concrete diagnosis with a concrete plan to treat it.

Lorie

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/21/2009 9:46 PM (GMT -7)   
Dani,
Like others, I wish I had something to offer you besides lots of support and hugs. I only hope you find an answer and soon - and it sounds like you're going to need to go to Mayo or UNM or even both. Don't give up. Keep on pursuing this until you get an answer!

((((((((((((Dani)))))))))))

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/22/2009 6:58 AM (GMT -7)   
 
  Dear Melissa,
 
     Thank you for your replay. I have never had a "parathyroidectomy" and I do not think I am being "assessed" for HypErparathyroidism (I could be wrong thou, who knows?). Would your mother happen to know where I can gain information reguarding hypo? Thanks so much for your response.
 
   Dear Joy,
 
     Thank you for your replay. I am sorry to hear of the troubles your brother is having. Though I will gladly help anyone in need, I do not think he would like my kidneys as they have had "problems" since I was 7yrs old & are under developed. He is in my heart and prayers for donor. I hope he can find help soon.
 
   Dear Chart,
 
     *warmest huggs* Thank you for your stregenth and encouragment, it means alot to me. *warm huggs*
 
    Dear Golitho,
 
     Please dont cry!! *huggs* Oh! And yes, good news, yes, I can get assistance for hotel costs if I do indeed need to go with option "c". I like having hope again. Thank you so much for your ideas and suggestions. *warmest huggs*
 
   Dear Lori,
 
      The TSH is all over the place, they re test it alot. I am sure he has his reasons *shruggs* Honestly I just want answers *huggs* I will find out more next week and let you know as soon as possible. *huggs*
 
   Dear P A Lady,
 
      I like the huggs, ALOT! *warm huggs* Keeps me strong!  *huggs*
 
   Thank you all for your replies.
 
*huggs*
   dani
 
    
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/22/2009 8:02 AM (GMT -7)   
So how soon till you get into Mayo? will be keeping positive for you and
finger's crossed...
more hugz...
(((((((((((((((((((((((((((((((((((((Dani))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/22/2009 8:17 AM (GMT -7)   
 
   Dear Chart,
 
      If by wednesday of next week, they still need help.. I will be seeking head to toe diagnostic from UNM or Mayo, after the holidays. Money being the main problem, as we have been hit with some very signifigant medical bills. August = 14K / September = 6K , so far this month has only been 1200 *finger crossed*. On a more positive note, however, I am working very hard on something that I hope will provide atleast a little boost to our income. I will admitt, I would rather get "answers" from my "team" of doctors than have to go to such extreme legenths, but, I will do what I have to do, if it comes to that. I have lost so much...
 
*huggs*
   dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/22/2009 8:23 AM (GMT -7)   
Dani, I really feel for you! Go back and read my last post and maybe you will get a chuckle out of it. Thank you for taking the time to post reply's for me. I hope and pray for all here.

merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 10/22/2009 10:17 AM (GMT -7)   
thinking of you anf hoping you get some answers.

hugs
melissa
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/22/2009 12:50 PM (GMT -7)   
Dani,
I know those medical bills must be weighing you down, but remember that UNM or Mayo likely offer payment plans - or may even waive portions of the fee (or maybe all of it, if you're an interesting teaching case). I just hate to see you delay treatment because of money, but I do know all about the stress that brings. I so wish I could win the lotto and help you!

Hugs,

PaLady

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14417
   Posted 10/22/2009 5:08 PM (GMT -7)   
Dani, thanks for the offer, but he has enough troubles. Since he got E-coli poisoning nine years ago he's just gone down hill. (Kidneys, shoulder surgery, parathyroidism, gall bladder troubles)

He's on the list finally, but no one in our family is healthy enough to donate to him. He's 50 looking like 70.

Well, you get better soon and I pray your money troubles will be solved.

Joy
Health problems: sleep apnea, hypothyroidism, GERD, glaucoma, OA, environmental, food, and drug allergies, asthma, high cholesterol, pre-diabetic
Medications:Nexium 2X a day, 300mg Zantac, K-Dur, Lasix 2X a day, Zyrtec, Zocor, Lumigan, fish oil, B12, Substex, calcium + D, Advair, Albuteral, nebulizer
 
I don't suffer from insanity, I enjoy every minute of it!
 
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 10/22/2009 6:26 PM (GMT -7)   
Dana
 
I have been trying to research this Hypoparathyroidism have you tried Googling it? Mayo clinic has a listing about it, the question I have is do they think you have Hypoparathyroidism or Hyperparathyroidism? I have been looking in my Nursing books and medical manuals and I have found very little on Hypoparathyroidism. But I will continue my research!  When you talk about going to Mayo's are talking about the main Mayo Campus in Rochester Minnesota, or the one in Arizona. The main clinic you can go there without an appointment, it might take a day or two to get in but it can be worth your time to do it that way. If you have to wait a long time to get an appointment. I will say this from personal experience, I am not at all sure that they are that much better than most any other place, other than the fact you do not have to wait forever to get your test done. The can do a whole battery of different test including MRI's and any other type of test and you can get them all done in just am matter of a few days! That is a real plus! I have been to Mayo Main campus, and done it with out an appointment, I did this at my daughters urging as she is an RN at Mayo's main campus.  All I will say is I will not go back there! But each person must draw their own conclusions from their own personal experience!  Anyway If there is any thing I can do to be of help to you please let me know!
I keep you in my prayers!
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/22/2009 7:30 PM (GMT -7)   
Dani, has your thyroid stopped working because of an autoimmune disease? Your symptoms sound so auto immune orientated? It just seems so wierd that they can't work out whats going on. Or is it a case of no one knows? Sorry to bombard you with questions.
Worrying for you, golitho

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 10/23/2009 3:16 AM (GMT -7)   
Oh Dani, I'm sorry to hear that w/ everything else now you have thyroid problems! I wish I had read your post sooner as I have hypothyroidizm too. At least I did before they took my thyroid out about 10 years ago when a cancerous tumor grew completely around both glands.
I still have it because I have no thyroid to make the hormones so I take synthroid. My whole family has it, well all the girls do, Mom, Sis, and a bunch of Aunts & cousins. Thyroid problems are much more commen in women. Hypo is an under active thyroid and hyper is an overactive. Both can be controled w/ medications. The symyoms of hypo are being tired all the time, hair loss, weight gain> trouble lossing weight, loss of sex drive, constant thirst, digestive problems, lack of energy and the desire to do anything. You may have some symptoms and not others as it affects everyone differently. You may need to see a good Endocrinolagist (?spelling?) because its  hard  to get the meds dialed in properly and if they give you too much synthedic thyroid hormone (synthroid or Levoxil) you'll end up with the symptoms of Hyperthyroidism.
Sorry if I scared you, it's not that bad really once you get the dose of meds right. If you have any other questions, maybe I can help. Good luck Lil Sis!
Big Thyroidless Hugz coming atcha!
Pete 
When I was young, I broke almost evry bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men. They are both serving in the US Navy, My oldest is serving on a aircraft carrier but is currently in advance radar school. The other is a Asault Ship "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/23/2009 7:46 AM (GMT -7)   
 
   Dear P A Lady,
 
     Thank you for your support an understanding. I do not want to HAVE to go to UNM or Mayo. I still holding hope next week provides the answers. But, if not, this time, I am ready for action. When it comes to the cost... I am sure if I didnt have little ones to care for, I would probably go about this differently. cost and careful planning will be needed. But, it is what it is. So, just keep trying the best I can. I do understand where you are comming from, and if more managable solutions come to light I will jump on it, for sure. I am hoping with every fiber of my being that my Doctors have the answers they have been searching for. If not, well. I will try my harest to get to the solutions. *huggs*
 
   Dear White Beard,
 
     Thank you so much!!! I am glad I am not the only one who had such a hard time finding information reguarding HypoParaThyroidism! It seems to be very uncommon unless "enduced" by surgical procedures / Chemo. A dear friend emailed me with the "auto immune" "genetic" causes last night. I feel much more prepared now and that alone is a huge weight lifted off my shoulders. I cannot thank you enough for your help. It means so much to me.*huggs*
 
   Dear Golitho,
 
     Yes, they are looking at "Hypo para thyroidism" from auto immune / genetic causes.  Though I hope that isnt the case... if it is, atleast I will have a "name" to get mad at. Or heck, just having an "answer" would be terriffic. Thank you so much for your support, it means so much to me. *huggs*
 
    Dear Pete,
 
     *huggs* I am not being looked at for "hypo thyroid". But, gosh, I simply cannot imagine all your have had to endure, and yet stay so active and positive!!!! You make me want to try harder each day. *warm huggs*
 
     I am being assesed these last 3 months .. for HypO Para Thyroidism.  If that is indeed the culprit and we can find the "cause" (either AI or Gene) we can slow down the damage and *cross fingers* being to repair the extensive damage that has been done to my body.  I had hoped, early on that "hypothyroid" or "hypErparathyroid" was the culprit as there is a "fix", but my doctors reminded me early on that they were "ruling it out" and they didnt think that was source of my rapid progression. And yes, I do see an endocronologist, he was added to the team almost 4 months ago. 2 weeks ago they added in a disease specialist after "test results" came back from endocronologist. I am to have meetings with them all next week.
 
    No you didnt scare me. A few months ago, I had hoped "hyperparathyroid or hypothyroidism"  was the answer and was dissapointed when that wasnt the cause. Feels silly now.. but...I wanted it to be fixed so badly, I held on to hope even thou my doctors told me they didnt think that was the case. *warm huggs*
 
Thank you all for your support and understanding,
*huggs*
 dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/23/2009 10:53 AM (GMT -7)   
Dani,
Just want to let you know that I know you're doing all your can. I didn't mean to try to pressure you at all. This road you're traveling is hard enough!

(((((((((((Dani))))))))))))

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/23/2009 6:07 PM (GMT -7)   
 
  Dear P A Lady,
 
     No worries!!! I do not feel you are trying to pressure me atall!!!!!! *warm huggs* I know your are trying your hardest to find helpful ideas and solutions!!! If it wernt for you I would never have thought to call up and ask about insurance and fees!!! Please, please don't ever worry about that atall. I wouldnt be where I am today, and have the solutions at hand, without your help and support. Please please dont every feel that way *warm huggs*
 
*huggs*
   dani
<BR>
TWO roads diverged in a yellow wood,<FONT size=-2><A name=1> </A>
And sorry I could not travel both<A name=2> </A>
And be one traveler, long I stood
</FONT>


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/23/2009 6:19 PM (GMT -7)   
 
...Oops! Looks like Ive managed to mess up my signature

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood


opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/23/2009 7:18 PM (GMT -7)   
Dani
My wife was diagnosed with Hashimotos(sp) disease at age 13. That is an auto immune hypothyroidism. She has had the left side removed due to nodules and had the right side reduce by half the thickness at the same time. Has yours started to enlarge? There are SO many side effects of hypothyroidism and most can be linked to other things too. My wife has side effect that are common for her thyroid, B-12 deficiency, and now may have Chairi's malformation.

Take care,
Bill

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 10/25/2009 3:55 PM (GMT -7)   
 
 
Couchtater....sorry about your sis....if I could give my kidney I would sure think about it..
 
Dani...I know little to nothing about that but it sounds bad...hopefully when you go you will get the info you need..
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 

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