[leannedro]

#1059126

I feel like venting. Read a few other post of people doing the same and it seemed to help…..

I have had graves 12 long years. Trouble with medication in the beginning but got that down to and art now. The first few years were tricky and hard to handle but it might just have been that I was a teenager. Most of my life with this not so super, sidekick… Has been manageable. A few note worthy and scary storm episodes after the birth of each of my children but besides that only small hassles…. Until recently.
5 mo. Ago I gave birth to our third and most likely last (graves for me at least, makes bringing a child to term a feat). I have spent the last 4 mo. Untreated. The last few years have been hard on us financially. Husband has been laid off and changed careers. Which I don’t mind…. Minus the lack of health insurance. To say we can’t afford a trip to the endow is an understatement. Generals are to afraid of treating me the wrong way and I can self treat myself. Well I am pretty good at guessing my levels before they are tested but that doesn’t do a lot of good when my script for pry is up. Anyway….. I am a mess. I am thankful in this time frame I haven’t gone into storm and truly hope I either work my way into remission or a drs. Office before that ever happens. But I am completelyfrazzled….. Mood swings that give my poor children whip lash, restless, unhappy, hot! Constantly Hot! No strength no stamina but unable to sit still. An Artist for a living I haven’t been able to finish a single piece due to the shakes. So my husband ask that i look for a pt job which is fine…. I am sure he just thinks I need out of the house and is doing me a favor by watching the kids. Three jobs I have plowed through in 4 mo. I don’t know how else to explain it other than I physically felt and feel unable. I felt crippled the heat, extreme weakness, dizzy, unable to focus…. So now my husband thinks i am going losing it and becoming a lazy good for nothing. To top it all off my sex drive has become non existant. I really couldn’t be much worse of a wife or mother at this point. I attempt to explain what is going on with me but he just doesn’t get it. He has heard drs. Tell me I am doing great others say I could die from storm and my mother telling him its all my fault if only I’d have taken that iodine. He just doesn’t know what to believe or how to be there for me. I am not mad at him for it. Just mad at the whole situation. I want to be myself again.

[Ski]

#1172381

Hi leannedro,

I am SO SORRY to hear that you’re in such a bad way! All of what you’re going through can be traced right back to unbalanced thyroid levels, so I hope you find a way to get help — it’s true that, untreated, you risk FAR worse (the storm you refer to is the most severe consequence, but you’re also damaging your body’s tissues every moment you remain hyperthyroid), so whatever it takes, please get some treatment. If you have a university hospital nearby, you may be able to get care there, or there could be a mechanism for assistance for uninsured in your area. Check this link for possibilities:

http://www.patientadvocate.org/report.php

It’s also true that treatment is no “magic bullet,” and there’s still going to be some time before you feel truly well, but you NEED to get on the right road. You’re literally risking your life. Before there were successful treatments for Graves’, it was fatal 50% of the time — that’s staggering.

It’s possible that you could get either surgery or RAI, then manage with replacement hormone, which is FAR easier (and cheaper) than managing hyperthyroid levels with ATDs, plus you don’t risk spikes into hyperthyroidism when things get rough (just when you need it least…).

Please let us know how it’s going for you! I’m so glad you stopped by to vent.

[snelsen]

#1172382

Hi, I second Ski’s post in all her comments. I just wrote a very long post which got lost because my server decided to go down just as it was sent.
A summary of what I wrote follows:

-you health insurance and financial dilemma are very real. Here is a suggestion with that in mind. You must be medicated with ATD pretty soon, or you really are in danger with your health, short term and long term.
I suggest a free clinic, low income clinic visit, explaining your situation. Any doc can order thyroid labs, learn where you were with your dose, how long you have been off it, and write an RX for you. That is a START.

-the symptoms you mentioned certainly reflect being hyper. You did not mention your BP and heart rate. What is your heart rate? If it is above 110, 120, resting, I suggest you go to an ER today, tell them you have untreated hyperthyroidism. If your heart rate is racing, you might truly end up being an emergency. You don’t want that, but it at least would get you in the health care system.

-I suggest your husband, and if applicable other relatives and parents, read these posts, so they can begin their learning curve about Graves’, and the potential serious health issues that exist for you. And they will learn that the tremors, irritabliity, nervousness, inability to sleep, being hot all the time, are PHYSIOLOGICAL symptoms you cannot control because you are SICK.

-IT does not matter for your current problem right now,but sometimes the phrase “thyroid storm” is misunderstood. If you did have a thyroid storm after each of your pregnancies, you would have been a medical emergency, wiht the possibility of death, and most likely been in an ICU each time. So I am guessing that, although you had an episode of recurrent hyper symptoms after each baby, that you probably did not have the situation I described in the previous sentence.
IF you did, I suggest you go to an ER right now with that history.

-I also suggest if your resting heart rate is above 110-120, you go to an ER to be evaluated. That is a serious warning sign. Along with a higher blood pressure. If your pressures are above 140/90, you should be seen.

-My city has low income clinics and free medical clinics. Is this an option for you?

It is easy to understand why you cannot work. You are super sick until you get treatment. You can’t help it, you hate it and so does everyone around you. Been there, did that. It is very hard.

Do write again with some responses to what I wrote.
Shirley

[catstuart7]

#1172383

Just great advice already, but thought I’d add that some hospitals are required to treat people who go to the ER whether they can pay or not. Something to do with federal funding, you could probably find out which ones with internet search. Once you’ve got the scrip for whatever ATD works for you the generics don’t seem to be too expensive. I hope you get some relief soon!

[Kimberly]

#1172384

Hello – the Patient Advocate Foundation that Ski mentioned is a great resource.

Also, there are a number of clinics in the U.S. that provide care on a free or sliding scale basis. The U.S. government’s Health Resources and Services Administration web site allows you to do a search by zip code. Although they don’t always offer specialist care, they can at least connect you with a physician that can order labs and prescribe medications. You can find them on the web at: http://www.hrsa.gov/index.html

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

Take care!

[Author]

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