HypoparaT

Feb 20,2009 Month 5

Sun, 22 Feb 2009 14:54:55 GMT

This Has been a real challenge a challenege I did not expect at all. I have talked to others on Forteo and they did not go on for too long with the bone pain, while I have in fact gone on with the bone pain and it at times is so painful I have not slept in a few days and cried or walked for hours.
My calcium dropped when I was given two medication nueral blockers to help in the pain and the level of my calcium dropped rapidly because that was a side effect of that. I dropped and was put into the ER with Bracycardia and was NOT doing well on IV Calcium Carbonate /magnesium fusions again. My veins are so ruined from that. I so remember the thought and talks about an IV being put in my chest to help in this process and a surgeon saying " Oh hell NO! " Calcium carbonate eats veins and the cleaning of that is so endless and crucial.
NOW I face HI Phosphate.. what does that do?
Closes down the renal glands and you look at temporary dialysis of your kidneys. My kidney has always been angry anyway, I did not know exactly why.. but this is why..God kept me alive throughout my life literally.

Now the doc has me down to a lower dose of Forteo in hopes we can lessen some of the bone pain. The forteo helps in the management of the blood calcium levels and thsi does help in the sanity issues and keeps me from going into the land of [ hell] or wherever that place is when I am so low and my heart and body are so crimpimg up my mind goes with all of it too.

So this weeks news is this.. I am breathing, the sun was shining most of the week and I am not giving up. The calcium is up and I am able to think and not do crazy things like I use to. In the end this is good, right ? In the end I will live too, right ?

Month 4 of Forteo

Wed, 07 Jan 2009 03:11:14 GMT

so far this has been a journey. I have maintained a rollercoaster of a ride at times but not near as badly as i have been through in the last ten years. the lowest i have gone in the last 4 months was a 7.9 total calcium level. or a 1.14 ionized. the highest so far in a total calcium 9.13. normal setting is 8.7-10.5 on a lab.I am thrilled. Standing appt every 2x wks and will remain this way steady for 2 years or until something more compatible comes our way in studies.

Columbia University is doing trials december 2008-2010 on I-86 and I have heard that [ rumours ] this might be more compatible to us because it fits our bone formation better [ our bones are different from anyone elses,especially a person who has oeteoporosis] we need a complete parathyroid hormone that replaces what we do not have or need ,which is parathyroid hormone.

Forteo ,for right now is the closest to this and has its absolute benefits,in that it is replacing my parathyroid hormone,though it is only half life for me which requires two injections daily.

I am however STILL going through the bone pain. the doctor has given me neuro blockers and a nasal mist to try to block that pain. there is NO real pain killer for bone pain. I am looking into hypnotherapy because of the intensity of this at times. At one point it brought me to my knees. Opiats remove a person from the pain but do not kill the pain. PLUS the vomiting is horrible and there is no real relief except addiction which serves nothing towards the pain in this matter. So, if in this predictament I do suggest pain management with your doctor if the side effect of bone pain does not let up soon.

I have decided that normal calcium and sanity is my choice over the insanity and heartache that I have zero control of. Therefore for now I am choosing to stay on the forteo and to believe that there will be a day a better medication will come along. After all, diabetics have their negatives .. well so do we. It is all how we choose to live with this I suppose. I choose sanity for today :)

Month 3 of Forteo

Wed, 10 Dec 2008 05:04:45 GMT

I am going into the 3rd month.
Golly I am announcing this as if giving birth to a baby *
the pain is intense , bone pain is intense. I have been biting my pillow. I have gone through in my head of how a bone cancer patient must feel [ not even getting close to their pain ] in this scenario, because DAMN this hurts like HELL!
I have been in so much pain I have removed about one hundred news letters off my gmail acct so I do not have to look at anything else to think about.
sound crazy?
it is!
Lands end, my catalog store for winter wear had to remove me from their christmas customer list because they were in my email box. Why?
because I am in pain and my eyes do not want to read.
make sense to you?
no, me neither. [ laughing ]
I get ten personal news letters from loved ones who have businesses of personal growth , either in churches or centers or something. I had all of them remove me.
why?
because I am in pain and not even them help me right now in reading not to be in pain.
My doctor, who is the absolute best today said to me " I have nothing genious to say to you about this " I looked at him and smiled.
percocet does not work on this so we go to medications that work from a neural base that will block centers of pain, we hope. this is not perfect. that is why bone cancer is so damn painful cruel and obscene.
So, in the meantime, I am a little low on my calcium, not by much though, the total calcium is 8.4 low/normal ionized 1.15 low, but hey I am so much better from a 1.1 that I am oozzzing with smiles. I mean this is a miracle. I am doing better than I was.. I am having to pass some things for others. not having to go in for fusions is A-OK with me ! So, veins VS. bones ? well heck lets see?? I will take bones for now because a calcium is hard on my veins eats them. my veins are not holding out. The IV and my veins both shake when they meet each other and IV nurses dislike a bad stick. Well not a bad stick as much as a hard stick. I am not easy and it gets so hard for them and me we all end up saying we are sorry because MY veins callapse and they cannot find one to taht will cooperate.
Thus the forteo.
I talked to Doc and we or I decided today that My IQ has dropped about maybe 10-20 points , heck maybe more since 2000. I may be way off. I know that when I look at anything now I have to wait for anything to register and to acknowledge what i hear to make sure I am hearing things correctly. Hands feet face numb most of the time with-in the last ten solid years plus a wave of seizures from hell plus a life change of illnesses that changed my thinking my thoughts and brought up all fears from the past present and some fears of future taht might or might not happen.
My life changed.
Good bad indifferent to those around me. It was a life that I just as soon ended if a doctor would not have helped me and soon.
SO, bone pain for me is so much better [ and I am in a load of pain ] than the low extremely low calcium and magnesium I have been going through for years and years and the effects of the damage I have from that result.

So into the 3rd month I am still here.
Merry Christmas Happy Hannukkah and Happy Holidays Happy Kawanzza and Happy Solcstice

Month 2 of Forteo

Wed, 12 Nov 2008 21:52:12 GMT

Well I am now on Month 2 of Forteo.

there are a few side effects.

BUT, get this, for the first time EVER, my calcium runs 8.5 - 9.4. The normal calcium runs 8.7 - 10.5 . This is the most normal I have been in years. I have ran so low in so long my brain has had a bit of an adjustment as my body has too.

The side effects that I have been having are headaches and some bone pain. I will discuss this with my Dr. when I see him On Tuesday. I was getting blood work every other day but alas my veins were not holding out SO we are going every other Tuesday because of this. I see my doctor at this time too. Mt veins are grateful.

Thinking is clearer and amazingly so. The doctor also put me on a hormone patch for menopause, I stopped crying and the hot flashes stopped. WOW, amazing. lol. My husband is a grateful man.

Since they took out the pituitary adenoma back in 1990 one thing that is clear to me and has been made extremely clear to me by two doctors no one can get an accurate hormone count on me because the pituitary was messed with and half cut away. So hard to tell if I was going through menopause or not. Since I had ovaries , no one could tell so it was all up to my moods , BUT, they could not go off that because of the HpTh.

Hypoparathyroidism can mimic bipolar disorder along with depression so badly that your thoughts are scattered. This is why it is important to do as your doctor tells you to do, exactly.

I suggest sharing information publicly as I do so doctors can learn. I am a primary HpTh and Doctors virtually know not much about us at all. as The main Doctor at NIH told My doctor " This is simply throwing things into a pot and finding out what will work ."

On that note, I have to make notes and my doctor and I learn together because I have been a very hard case and did not simply respond to extra calcium and Rocaltrol and extra mag. I was a mess.

I am finally in a bit of hope that I can function for now. In the meantime I am going to blog about this progress and hope that someone can learn as I blog.There should be NO secrets when dealing with this disease that is so rare that no one has a chance to learn about it unless we educate openly on the web as a patient.

Forteo

Thu, 09 Oct 2008 23:49:29 GMT

Allow me to say this:

day .. days OK I am into two weeks now of injecting Forteo. 20 mcgs 2x daily I go the tummy route and every now and than the fat in my leg route. for the first time in my whole frigging life I am happy to have extra padding to simply say.. I can put a need into some fat. Every now and than I pinch a small pinch of " ouch that hurts" BUT i believe that is more tenderness from all the times , every other day of blood draws for calcium levels needed to keep track of me now to make sure I do not do something stupid like get too much calcium and close down everything .. "JOY!"

I am on 4 Rocaltrol daily .. still " and down to 1000 mg calcium daily.. 2 injections of Forteo daily..

I am maintain for the first time ever a 8.6 calcium total.

I will be getting a ionized once a week now or every other week .. [ cross the i dot the t sort of issue ] If I can maintain the 8.6 total calcium than we start to draw back on the Rocaltrol more.. remember now I was on 9 total two weeks ago.

total calcium was a 7.6 and my ionized was a 1. so I am so much better.. but.. I am running a fever and I have been catching every last damn thing there is to catch.

my digestive tract for the first time in a hell of along time is working.. slowly working. I am able to digest better that ever.. not cured yet.. but I feel marked improvement

also, since the pituitary was removed in 1990 it was hard to tell if i was going into menopause or not.. the injections began and tears free flowed constantly for 4 days. hormone patch was put on and problem solved that issue. I did have a hysterectomy long long ago but I do have an ovary that has a real issue and should be removed but because of my difficulties with calcium electrolytes issue that will not happen unless it was cancer.. and it is not.

Since my doctor and I are so new at this and we are all learning from this , he got ahold of Winer and she herself said " this is like making a soup, a little of this and a little of that" her words.. and she told him this is all experimental when it comes to us and if it works we have to watch us closely and she told him to start me on 2 a day.. Primary's are hard , we are born like this and we are hard to treat because our bodies have not had a normal amt of calcium in it and our bodies sometimes have a hard time with the calcium signals of our own bodies producing normal amounts.. to produce my PTH my own D and maintain my own level of calcium what a treat indeed.. IF I could get rid of the extra medications like the anti depressants and the gastric paresis meds even better.. I am so excited by that thought alone..

I am excited about thinking again and maintaining some memory and maybe not being so exhausted.. I am excited about being able to take long road trips ride on the back of a motor cycle and go dancing and act like a total idiot again.. Hell spelling a word right would be nice too.. ya think.. seeing a friend or two who ran away from me because i have been ill for so long and did not get better would be a real treat.. i want my frigging job back.. i have been eying this law firm in my new area a small one... I might .. if I can.. be able to maintain there if I can maintain my health..

I am excited that maybe I might be able to live or try to again.. I want this to work so bad I do not care if I throw up every day forever.. i want to live.. without so many other medications.. I will just take one the forteo.. that would be OK with me.. i can live with that damn needle..

Hello Dear North West Members

Sun, 22 Jun 2008 19:20:48 GMT

NOTICE: I have moved as of last week to a new location 60 miles from where I was. I am going to email James Sanders my home address and phone phone number for your information because you will need to get ahold of me in times of stress or questions. Have a wonderful summer, enjoy the conferences set up in DC and Indiana and hugs love and healing light your way* shawn L President of the NorthWest Washington State Mt. Vernon Wa. *

All in a day of May 2008

Thu, 22 May 2008 23:40:56 GMT

1 in 100,000 people or maybe higher are born with this disease. Familial and primaries .

There are surgicals who are made this way by slip ups in surgery or by medical cancer's/ radiation.

I am a primary and was born this way and no one knew anything , nothing until I got very much older in my 4th decade. I also have auto-immune disease now and things can get interesting with that on an endocrin level. My emotional health ranges are worse than most and best as some, I am human and thsi disease needs full research and support by everyone both iin the medical field and loved ones.

did you know that people with this rare disease have trouble with spelling. We tend to not connect our words when speaking and with spelling.

Spell check is my world when doing reports and letters and anything in a form letter, legal or trying to report something to my people in washington state.

my words tend to come out upside in inside out and to the point a 3 year old could probably teach me how to spell much better than I ever thought of.

Reason for this is years of not having enough calcium magnesium sodium potassium . To replenish these on our own could be a life hazard without the proper blood tests to see exactly what we are low in.

I and my internist always prefer to do an Ionized calcium draw on me rather than a total draw of calcium.I find this to be the best as does my doctor. The hospital that I have finely made peace with has a fast monitor now that they can get my tect back with-in seconds in front of me. That waiting part is far less painless .

The part to find a vein is not.The IV has to run calcium carbonate through the veins. an IV solution is blended in with it as to not make it painful and a push is never to be done unless you are out cold,dieing and know knowing what is going on. U can die on a push it is that hard on your heart.

The carbonate is to ALWAYS be put through an IV and blended in through that.

BUT, that carbonate is hard on the veins and collapes them fast and after so many times in the hospital my veins have had a hard few yaers. Puttting a cath in has been suggested and pulled right back off the table because of the high rate of infection the chances of total collapse and the danger it brings and can bring to my heart.

Many can do very well with this and others, like myself cannot have this at all.

Medically some of us have found or rather the IV nurses, have that groin ,neck entry is probably the best.

a medical update by Shawny

your NW president *

Hypo-Para-Thyroid-ism in the verternarian world

Tue, 15 Apr 2008 16:35:45 GMT

Well I took my 8 # kitty to the vet a few months back, named Sylvester T. Puddy tat Stallone. He looks like his cartoon counter part. This kitty has a total puff look and the minute you sit down he is like a magnet and clings to you like a dryer sheet.

He is adorable would melt your heart and is now 10 years old. He has been diagnosed with kidney failure. Caused by Hypo-para-thyroidim. not rare in doggies or kitties. Rare in us who are born with it. Primaries, like me. [ meow ] But not my feline cat who sits on-top of me in the morning and whispers loud kitty explainations about how his stomach is empty.I swear his whiskers are 5 feet on each side! >^.^< [ exageration of course * ]

I get the rocaltrol or rather the generic brand from the apothacary taht they mix up for him in liquid for in chicken flavor about 1x month and the cost is $30.00. His medication is far cheaper than ours, except no insurance covers this because he is a feline and does not have a social security card. I cannot declare this kitty as a dependent or as a someone who needs medical insirance on Blue Cross Blue Shield, Sylvester is not covered and there fore his medical bills are our responsibility and my personal medications are extremely high.

I have learned to give the Kitty his medication when i take my medication. That is a great way to remeber both of us. He has had a few teeth removed , so biting me is getting harder . [ thank you GOD! ] he is spunky and runs around the house playing with the younger kitty Ophelia, age 3 years. Looking at him you would not know that he is ill. He looks well for a kitty that is having issues with so much inside. I pick him up and ask him all the time " are you tired ?" Why do I ask that to a cat?

Cats sleep more than any other mammal I know of. Why? because they can.He tends to perch on my shoulder, hip, head. He is a percher as an Eagle hangs on a cliff Sylvester sits on your shoulder or your head depending on the shape of ones head.

He had HP-tH he is one of US* Tiny adorable and so fuzzy. >^.^<

I just thought you would like this story today *

NOTE: I will be physically moving in June 2008 to Mt . Vernon Wa. June 5 is the closing of our new home. I will give Jim sanders the home address and new phone number all the information after i get moved. There will be nothing on the internet anymore for security reasons.

President of HpTh Washington State

Shawn L .

news Letter 2008 HpTh Head Quarters in Idaho

http://hpth.org/?pv=NL

welcome to all new members

Sat, 16 Feb 2008 18:54:54 GMT

welcome to all new members to the Washington Hypo-Para-Thyroidism blogdrive.com we are excited to have you and will answer any questions you have ***

respectfully ,

Shawn L.

President

Vice president Matt Blumenfeld

Secretary

Michael Noland

Kirkland Wa. 98034

This is now a fully paid site by your president in the NW

Sat, 16 Feb 2008 18:47:04 GMT

We are now paying for this blog. I am personally paying for this blog site. It is better to do this because I can monitor it better and block problem issues /verbs,lol. I keep on top of that anyway.. But this helps better.

I hope you visit this site more and leave comments suggest articles and ask questions so I can research for you.. Thank you,

Shawn L.

Washington State Hp president *