Swimming with No Life Guard

The transition off of Natpara is about what I had expected, but not nearly as easy as I had hoped.   A lot of it is just the old familiar crap but with an overwhelming sense of fear.   Now some may say this fear is misplaced and it’s no big deal, but they should try living in the shoes of someone with Hypoparathyroidism.    Fear may just be what keeps so many of us with stable levels because we are so aware to any changes.   A tingle hear, numbness there, pain here, racing heart there.     These things make us pay attention.   Adjust.   Wonder and keep going.

You see it’s all a guessing game.   Unless you are someone who has easy access to labs which is no one, you spend your day self monitoring. While there are obviously many symptoms that are different with high and low calcium levels, it is not always easy to tell. There are many overlapping symptoms too.   That just ads to the challenge and fun of the game of managing it all especially during transition.    Do I need to ad more calcium?   Did I ad too much calcium?    Is that just a normal numbness because I was sitting too long?    Did I have brain fog just because I’m getting older.    It’s all so fun and yet not fun at all.

I will say that amongst my Hypopara groups, one of the biggest stressers right now is the fear of the unknown and feeling like you are on your own.   Even those of us with very knowledgable doctors feel this way.  

I’ll be honest I had already been thinking about going back to my local Endo who I currently see for my thyroid levels but was thinking of having her handle the Hypopara stuff too.   She is smart and while not the expert that my specialized doctor is, she is accessible in a way that the other one is not.   Plus I’ve felt for a while now that if there were any issues, she is local and I would be able to easily get to her.  The flip side is my expert doctor specializes in Hypopara issues, understands it and all the quirks. Plus she is super nice.   Her level of understanding of this disorder can not be disputed. This is why I’ve been going back and forth on what to do and never made any changes because things were stable and you never rock a stable boat.

Well the boat is rocking now.    Here’s the thing…. Everyone wants the best. It’s normal, but sometimes the best isn’t always what you think it is or what you need. Without a doubt my expert doctor is extremely well versed in all Hypopara issues. She understands it in a way that most Endos don’t. She is caring. She is knowledgable and she gets it. On the flip side, her office and her are not always readily accessible.   Labs take time. And while I do have her cell phone number in case of emergency; if there is an emergency she not here.

I currently feel like I am swimming in shark infested water without a lifeguard. I know the sharks are out there, but I don’t know if they are going to strike and if they do; I’m not sure if there is anyone who will be there to blow the whistle to help me.

I already have an appointment scheduled next month with the local Endo for thyroid stuff who I have messaged about coming off Natpara, but rightly so she feels that other doctor should continue to handle the transition. I was kind of hoping that she would take the co-lead but I’m thinking due to various valid reasons that doesn’t work so well. In a perfect world she could order the labs which she can get quickly and confer with expert. It is not a perfect world.

So I’m still treading water. I feel the effects of the low calcium. I’m taking the meds. I’m feeling the hypopara symptoms rear their ugly head. I’m plugging away. I’m being cautious. I’m plotting. I’m planning. Believe it or not I’m still training….. Although carefully, cautiously, smartly and not like I was prior to coming off the meds. I will get to the finish line of NY, but to do that I need to get this calcium stuff under control.

So with that I will be stalking the lab portal to see results of this mornings blood work. I will make adjustments. I will just keep going. That’s the only choice any of us have.

2 thoughts on “Swimming with No Life Guard

  1. As someone who was diagnosed a year ago with hypoparathyroidism, I agree about the daily fear and that unless someone is in the same place, they do not understand. Even my family finds it difficult to understand when I question every change in my body, when I worry about if I will trip or fall on my daily walk or if my medication is doing all it can. I tend to keep these fears to myself and sometimes that can be a heavy burden but, it is as you said, we keep going because what else can we do.

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