[Lwilliamson]

#1060508

First time posting on behalf of my daughter. it has been difficult few months as my daughter got hit with this out of nowhere. She is on methezimole. Was on a few days and had to come off for 4 days in order to do the 123 uptake, and now on for only 1 day.
physically she feels week of all muscles, it has impaired her ability to walk, she feels numbness, her veins are protruding more, she has hair loss. she also feels dizzy, and has trouble breathing, and sleeping has become difficult. lack of appetite, though her body tells her she has to eat. She also has tinnitus.Fast pulse, irregular heart beat.
mentally she feels she cannot cognitively process information (severe brain fog), feeling personality loss, disinterest in once enjoyable activities, depersonalization and derealization, and aggitation (definately). Sometimes she feels like she is dying, and is so scared about this. Fear of brain damage.
8/21 TSH 0.005 free T4 was 1.63, the latest show TSH as 0.010 free T4 1.14 and free T3 was 2.97.
Going through this since beginning of July. Any advise, Encouragement, suggestions on more testing, please give us your input. More blood work in 10 days, and hopefully the pattern of taking meds will help. Thank you and have a great day…..

[PattiMeg]

#1183017

Dear LWilliamson,
As Kimberly, the moderator of this forum will tell you, we are not doctors here. We are folks like your daughter who have Graves disease and are learning to live with it. You did not say how old your daughter is. How difficult it must be for you, as her mother, to watch her suffer so and be unable to alleviate it.
I ended up having to go off the methimazole and had RAI. Many of your daughter’s symptoms were things I struggled with, and reading about them brings back those awful memories. I felt moved to post this response, just to tell you that things will settle down after the medication takes affect and your daughter WILL get better. It may take some time, and there will be a roller coaster ride, but don’t despair.
You have found a great forum here with folks who are willing to share their knowledge and a place where you will not feel so alone.
Patti

[Kimberly]

#1183018

Hello and welcome! I know that we had a quick chat on the phone, but I don’t recall if we talked about getting lab results. It’s helpful if you can get hard copies of your daughter’s labs, so that you can see what the “normal” range is for each test that is done. These “normal” ranges will vary somewhat from lab to lab. It’s also helpful to track results over time to see if your daughter’s labs are moving closer to the “normal” range for each test. And if your insurance will allow, it’s nice to get labs done *before* your scheduled doctor’s appointment, so that you can spend the in-person time discussing the results – instead of having them delivered via phone.

Although anti-thyroid drugs start working right away to block the production of *new* thyroid hormone, the body still has to burn off its existing stores of excess thyroid hormone, which can take a few weeks before there is significant symptom improvement. That’s where beta blockers can be used in some patients to give temporary symptom relief of rapid heart rate, tremors, etc..

Take care – and thank you for being such a great advocate for your daughter!

[JEH]

#1183019

An added piece of information about lab results for T4. My recent labs had a T4 value of .8 (normal range being ~.08-2.0). My doc described me as being in a T4 “hole.” What I discovered was that age contributes to how the doc reads the T4 #. Healthy young adults should aim for their T4 to be in the upper range of normal. Elderly folks, which I am, need to be in the middle of the normal range, hence the reference to my being in a T4 hole by my doc. He now has me on a low dosage (37.5 mcg) Snythroid, to be retested in 6 wks. BTW, I have had Graves since 1998 but had been off medication since 2006. I had fallen in a hypo state with the low T4, gaining weight and experiencing nearly daily palpitations and heat intolerance. The palpitations have reduced significantly since starting the small dose of hormone and I am hopeful we can alleviate the other symptoms as well.

Welcome to this forum. It has great information.

[AzGravesGuy]

#1183020

Lwilliamson wrote:

Sometimes she feels like she is dying, and is so scared about this. Fear of brain damage.

This anxiety is normal. It can be very hard to break through it. What worked for me was meditating. I still do it every day and cannot say enough good things about it.

I remember it was very difficult when I first started to get my mind to focus through the anxiety but eventually it does happen. There are many free apps and mp3’s of guided meditations out there. Teaching yourself to breathe deep and slow on command can help shut down anxiety as soon as it starts.

Most of what has happened to your daughter will be erased with recovery. Her personality will come back, as will the hair, skin, and nails. It will take time however. The trick is remaining calm until the meds do their thing.

My best advice to you as a caretaker, advocate, parent, and friend is to learn as much as you can and never let you daughter lose faith that she will feel better. It takes patience but it will happen.

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