Hypothyroid & Postural Tachycardia Syndrome

Hi Donna. I appreciate this was written 6 years ago. Like you i have a daughter with hashimotos ... diagnosed first and shortly after pots syndrome which appears to have come secondary after she started on the levo and had a growth spurt. 4 years on and she is worse with everyday being a struggle. She is unable to work or study and i have had to stop work as her symptims are so bad. All consultants tell her she is too complex and do not communicate amoungst each other. I live in the uk so health care upto now is free but we are starting private to ensure nithing has been missed. I wonder if you can tell me if your daughter has shown any signs of improvement. Increasing fluids etc just do not work for her and the pressurw in her head can be too much to handle if she does this. Kind regards

Hi Marcelle,
So much has happened since this post for my daughter we are now dealing with ITP, EDS along with the POTS snd thyroid. As for the pain we tried all pain meds and none worked. We do have imitrex when the migraines are real bad, but we ate lucky enough to live in a state where marijuana use is legal so I got Sophia a medical card for CBD oil. It is the only thing that help with the pain. As for pots all we can continue to do is fluids and salt but sadly nothing is teally helping and Sophia cant work either; were trying to get disability for her now. This autoimmune disease is horrible. I joined dysautonomia international to try and spread the word to help our kids more. Best of luck to you and your dsughter
Donna

Hi Donna.
Thank you so much for responding. I really appreciate it. Sorry to hear that Sophia has learnt of additional autoimmune disorders. As you say these disorders are very cruel and life changing. Thank you for sharing the cbd oil information. I had not even considered it and after some reasearch it has recently been legalised in the uk so could be a line of enquiry for Shannon if all else fails. Shannon also has eds and as time goes on she struggles with more chemical sensitivities etc. I am hoping to get her natural dessicated thyroid. Have to keep trying along with finding some days when we forget about it as much as possible and do things that make us laugh. Hopefully your daughter has kept some friends. Sadly Shannon has lost all of hers as they just cannoy seem to find it in themselves to give her small chunks of time in a quiet setting rather than a noisy nightclub. Once again many thanks and if we find something which may help through our medical.support in the uk i would be happy to share it with you.
Best wishes
Marcelle

Hi @donnaburch,

I'm thrilled to see that you've returned to Connect! Welcome back! Thank you so much for sharing and updating us about your daughter in your response.

I can only imagine that both you and @marcelle have had a rough journey of appointments and few answers for your daughters. I thought you might also like to read through these discussions on Connect:
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/
– Autonomic Dysfunction https://connect.mayoclinic.org/discussion/autonomic-dysfunction/

I'd like to ask our Mentor @kariulrich, who has POTS, EDS and MALS, and also fellow member @worriedmom18, whose daughter has the same conditions, if they have any thoughts or more insights to share?

@marcelle, @donnaburch, other than continuing to research, what have the doctors suggested as the next steps?

Hi.
Nice to hear from you. Sadly medical support from my daughter is still very muddled.
She saw a private neurologist who reports she has damage to her autonomic nervous system as she had insufficent thyroid hormones between the age of 5 to 17 years which was discovered at 17 years. My daughter responded badly to levo and had a growth spurt like you would not believe and developed pots.
She has head pain amd flare ups daily. She was advised to go on to toprimate which has many devasting side effects. She will be trialing low dose naltrexone which has very minimal side effects and has evidence that is supports all her conditions of hashimotos, chronic fatique, pots and allergies. The prescription should be with us in 3 weeks.i am happy to report the outcome.
In addition i have taken legal action to get one of.her consultants to take responsibility and place a care plan on the emergency room file for her to have iv fluids and oxygen on the worst flare ups. 3 years on and the A&E wont do this with out a consultant input and none will do it stating another consultant should do it. She physically can not drink when in a flare up as it adds to it.
But despite suffering daily she makes me laugh everyday. take care all of those who are sufferers and those who have big hearts and are supporting those who are suffering.
Marcelle

@donnaburch I am sorry to hear about your daughter! Dysautonomia International has been a great resource for me. Has your daughter tried cardiac rehab for her POTS? I know it can benefit some patients.

@marcelle it is good to hear about the care plan in place for your daughter at the ER. That was a smart move on your part. May I ask the age of your daughter? You all have been through so much. I may have missed this but what is naltrexone treatment for? I know so many meds are used for other things.

Morning.
She is 20 years old. The low dose naltrexone is a very low dose opiode. http://Www.ldnnow.com helps explain how it works and isabella wentz (thyroid specialist) goes in to detail if you google search low dose naltrexone and hashimotos or low dose naltrexone and pots etc. The research on the web suggests it is being used to halt ms in its tracks and potential to help brain avoid any further damage. As i am in the uk there are a few prescribing consultants however it is currently unlicensed over here but there are petitions to get it licensed.
Marcelle

@marcelle Thank you for taking the time to explain it! This maybe helpful to both me with pots and pain with MALS and my sister who has progressive MS. I will do my research! I appreciate you getting back to me so quickly. Kari

Glad it is of help. My daughter and I have learnt alot on this journey. I will keep you posted as to how she gets on with the low dose naltrexone. Enjoy the research. I found it to be very positive.
Take care
Marcelle