Hashimoto Disease and heading to WDW in 2 weeks

[debbiemomto4]

Maybe someone here can give me more information than my ped. My dd 16 just was diagonsed with Hashimoto Disease. She passed out 2x in June-same episode. Hit her chin got up and walked to me than passed out again and had a seizure. since than we have been running test. EEG shows no seizure activity. Immediate bloodwork showed dehydration. One week later bloodwork pointed to thyroid shutdown. Recent bloodwork definitely shows Hashimoto disease. (Hypothyroidism).
We made an appointment with endocrinologist that we have never been too but need to wait till Aug 15. . Asked her peds. since we are going to Disney in 2 weeks what should we watch for and he said she will probably be tired.
Not much to go on. Anyone have any experience with this?
Thanks!
Debbie

 

[WisMom]

Is her doctor willing to put her on a low dose of thyroid hormone before you go? It does take a while to see improvement. I have low thyroid hormone and take Synthroid every day. I don't know if mine is caused by Hashimoto's (which I think has a genetic link). I would call and ask. If he says no, ask what the risk is. I'm not suggesting you risk your daughters health, just encouraging you to seek information and ask questions.

Good luck!
WisMom

 

[Notatourist]

I had Hashimoto's which lead to thyroid cancer and removal of the thyroid gland. KEEP HER COOL! Heat tolerance was and is a biggie for me and right now it's very humid and hot in Central Florida. Also, keep her hydrated. She might not like the idea, but it will help her.

Yes, she will be tired. I went on iron pills soon after I was diagonsed due to anemia from all of it. I'm still on the pills, but they have helped.

Good luck with all of this. Hashimoto's is pretty standard stuff these days, if you have any questions, feel free to PM me.

 

[SandrainNC]

I have Hashimotos. I take Armour for it (started with Synthroid but Armour works better for me).

I agree with the other posters. Can't they go ahead and get her started on something before she sees the specialist? If she is having that much of a problem, those meds need to be started now.

The only problem I have ever had really has been being tired.

Oh and I don't know if there is a genetic link with hashimoto's but it is an autoimmune condition (like Lupus, etc.) where you body attacks itself.

Sandra

 

[Tigger714]

My husband is a diabetic and also suffer's from Hashimoto's. When he was diagnosed the Dr. was shocked he was even able to walk in the door his numbers were so high. I would have to agree with the other poster's here. I would be making a phone call to my family physician requesting to start the Synthroid immediately. This should not be out of their realm of treatment. Make sure your daughter gets lots of rest and fluids and remember that she may be moodier than normal becuase of the disease. (my hubby was an absolute bear before meds) Good Luck

 

[Belle1962]

I also have Hashimoto's. Like Tigger714's husband my numbers were so high they couldn't believe I was still upright--single working mom--of course I can still function with a disease ravaging my body--I am WOMAN

Anyway---I agree with everyone else--get her on meds ASAP. Also--get a copy of her test results and fax them to the endo's office and explain the URGENT need. Quite frankly--if they can/t/won't accomodate you with her numbers THAT hight I would shop for another endo. You could also try calling every day once in the morning and once early afternoon to see if they have any cancellations. Another tactic might be to send her to your GP (not her ped). He/She may be more willing to assist you.

As far as the trip:

keep hydrated (water water water)

Don't plan on commando style touring--you can plan a mix of rides/attractions with the more "restful" ones in between (Hall of Presidents, Railroad, Philharmagic, Universe Of Energy, American Adventure, etc. do a search on the boards for good 'resting" attractions.) You can do this without her actually being aware of it if that would be an issue.

I would plan your day in "blocks" (which we often do). An example would be Morning block: 9:00 - 12:00 Park; afternoon block 1:00ish - 4:00ish--pool, rest, etc 5:00 ish-night park

ICE PACKS--I seem to be able to tolerate cold better than heat. I buy the disposable packs in the first aid section (about $1.25) and always keep one on me.

Light colored umbrella for waiting for outside shows and parades

keep on a meal/snack schedule. Try not to let any dips/surges take place.

Bring some stool softener/Miralax along. Constipation can be compounded by all of the "park food"/not keeping to regular eating schedule. Not a laxative--you don't want her in the run to the restroom mode--but just something to help.

Just watch her and when she seems to be flagging (sometimes you will be able to tell by attitude, speech, etc not just physical symptoms) take a break.

If all else fails and she is overly tired--stay at the hotel and lounge by the pool. Plan activities that you know will be in short duration but she would still enjoy (a few hours at DisneyQuest, mini golf, water mice, afternoon tea at the Grand Floridian, a movie at Downtown Disney, etc.).

You didn't mention your party size but if she is passing out and having seizures I would not leave her alone. You may need to split up from time to time so someone can 'rest" with her.

Along the same lines--be careful of rides that may make her dizzy.

HTH


As a side note and unrelated to Disney---I notice she is 16 which is getting ready to drive time--if she has had a seizure then in SOME states she may be unable to get a driver license. I know many many many years ago in MD--you had to be seizure free for THREE years to renew/get back/obtain a license. I was lucky that I lived close to so many family members and my job!!!!!!! I also had to resort to using public transit--UGGG!!!!! I'm just not a public transit type of girl with all those other people and germs!!!

 

[Daydreamer64]

Another Hashi patient here!

What were her TSH and other thyroid numbers?

If the TSH, antibodies, and so on are very off, it can cause all kinds of problems. Not trying to scare you, but she needs treatment now not in a few weeks. I was really weepy, so tired that I couldn't even get up some days to shower, my joints hurt very badly, and any effort wore me out. Some days were better then others. I've been on Synthroid for ten years now and am such a different person it's not even likely that you would recognise me if you knew me then and know me now.

It really irritates me that the doctor said that she will just probably be tired- he has no idea of how hard this is on your body- only other Hashi people can relate- it felt like my body was made of cement and it took all of my will to move. If your daughter had TSH numbers that have not strayed too far from the normal, then she will probably be able to adjust for vacation given that she has probably not felt good for a while now.

Even though I've been stabalized for a time now, I had two bad experiences last Labour Day weekend at WDW. I followed all of the precautions that I was told to follow and added some more rules for myself based on how my body reacts to heat. I'm also diabetic, often auto-immune diseases tend to clump with each other, and between both diseases I was so dizzy and hot that I fell down. I didn't pass out but it took every thing that I had to keep myself together. One time was at the Crystal palace after a long day in the heat and the other was at AK- I just started to fall- the family thought it was funny after I was feeling better- they said it was in slow motion- I leaned on a pole, slid down to the bushes and then finally melted into the cement. I can laugh at it now but it scared the heck out of them and me at the time. It felt like it looked, except I couldn't speak or motion for help. It was all over with after a few seconds. Too much heat puts strains on bodies that can't control their self cooling/warming abilities.

The advice given to me was that it takes around 6 to 8 weeks for the meds to stabalize BUT I felt better almost immediately after I got started on my meds. Hasi's is an auto-immune type of hypothyrodism. Meaning, that her own body is attacking itself. Don't get upset about the cancer comment. There are as many different side effects as there are outcomes with this disease. My thyroid has been getting worse for years and eventually it will shut itself off all together. Some people have the thyroid radiated and be done with it. The thyroid controls/helps to control so many systems in the body that it must be watched carefully. Honestly depending on her TSH results and T-3 conversion and so on, she may not feel well enough to even walk at times. After the second episode, my Dh rented a scooter for me- I was well rested at the end of the day but the rest of the family was worn out. I told them that was what it was like for me compared to them on a daily basis before I was medicated.

I hope she has fun on vacation, hashi's or not. After she is stabalized she should feel a great bit better.

 

[cinderella73]

Waiting to get into the specialist is the pits. Use your daughters regular doctor as a go between. She can write out the prescriptions even though she isnt a endo dr. . Thats what we did for my daughter in the meantime and it helped her a ton!