So I am Struggling Again

[newanatomy]

Let us know what the Doc says today. Thinking of you!

 

[DSRIGGS]

Thanks Ladies. I am being referred to an Endocrinologist for Adrenal and Thyroid imaging & further testing including adrenal stress testing. I have low Cortisol, low T4 and low TSH. This suggests hypothyroidism and possible adrenal insufficiency.

Now to figure out when I get in. If not soon I may go to the ER at Mayo in Rochester and that will get me diagnostics within a week.

 

[Annabelle]

I hope you are feeling better. What is creon?

 

[DSRIGGS]

CREON is a pancreatic enzyme that aids in absorption of nutrients. Cancer patients often use this drug because they can't get enough nutrients.

I had severe malnutrition caused by my original DS and at a year out (9/2014) I ended up in the hospital for a week because I was passing out, Heart rate was 35 and BP was 70/40. That is how they found out my total protein and albumin were just a little over half of the minimum value. I was eating 250 grams of protein a day. I went on 400,000 IU daily of CREON for a year. That is a metric shit ton.

In August of last year I eventually had to be revised by Dr K to lengthen my Alimentary Limb that my jackass original DS surgeon made half the length it should have been. (Please note I said Alimentary Limb and not the common channel, the channel that so many DS'rs have been brainwashed into believing is the only thing important about a DS. The CC is no more important than AL or BPL lengths. They are all critical).

So on July, 3 of this year I weighed 191 pounds and then 2.5 weeks later I weighed 175 pounds. I also became very weak, light headed, fatigued, sleeping a ton and passing out randomly. Healing from two recent surgeries the thought was that maybe I should go back on creon but at a much lower dosage * so I can maybe gain back some lost strength. My total protein is slightly below range now but not bad and my Albumin is low end of range. Ideally it should be higher but not end of world where I am at....so that is why other testing was run to check for adrenal and thyroid issues.


* One capsule with every other decent sized meal at 36k IU per capsule - so 72-108K per day max

 

[Larra]

Scott, I'm so glad you were able to convince your pcp that testing was indicated. I hope you get some answers that help you feel better. This has gone on long enough.

 

[Annabelle]

Wow you've been through a lot. I hope that it helps, it is horrible feeling crappy all the time.

 

[DSRIGGS]

Scott, I'm so glad you were able to convince your pcp that testing was indicated. I hope you get some answers that help you feel better. This has gone on long enough.

Thanks Larra Josh is a good guy and I knew he would. As he said I am over his head on this one.

They sent a referral to local endo today. If it doesn't go through quick enough I am going to have somebody drive me to Mayo or fly up there and go in through the ER to get testing. They are ranked the best Endo Center in the world and their neurology group was incredible with their diagnostics for Cameron.

 

[JuliaDS]

Hi Scott, Just catching up after a couple of weeks away. Sorry that you are going through this and hope you get to a real solution soon. Feel better!

 

[DSRIGGS]

Thanks Julia

 

[kirmy]

3 weeks ago I was actually up to 191 and then yesterday was down to 175 and I feeling like absolute garbage. I slept until 11 am and then at 5 was tired again so took a nap waking up at 8 pm. I felt just ever so slightly better today but not much.

It was suggested that I started on MCT oil (used in TPN) as it is absorbed very easily so I ordered some and will start when it shows up Monday. I am waiting for labs to trickle in but I will be talking to Dr k when they do and I think I am headed back to taking creon again, albeit at a much reduced dose if I do.

I am hoping this is just my body still trying to fully recover from two surge rise in 30 days of one another and just under 8 weeks ago for the first. All I know is that I am weak as hell and exhausted. ...and I have to get healed so I can work again or financially it is going to be bad....and we aren't far from there now.

As they say on another board where I post (started off as sports board but mainly a bunch of clever smart asses talking about everything now) FML!

Ah dude this shit sucks arse. I'm with Dianah. Xx

 

[DSRIGGS]

Ah dude this shit sucks arse. I'm with Dianah. Xx

Thand Kirmy but I will get it figure out eventually, I hope.

Hopen you are doing well.

 

[kirmy]

Thand Kirmy but I will get it figure out eventually, I hope.

Hopen you are doing well.

Typical you'd ask about me while you're hurting!
I'm fine brother. Just you get some calories in and get going. I'm thinking of you sweet stuff. X

 

[Soontobelovely]

Wishing you well

 

[DS fan]

Thinking of you and sending positive vibes your way. Also to the physicians taking care of you I'm sending positive thoughts for guidance and relief for you.

 

[DSRIGGS]

Thanks ladies. I am hoping to hear from mayo early this week.