Dysautonomia and Hashimoto's Disease

[DizzyGirls]

Does anybody else have Hashimoto's?  My oldest daughter was recently diagnosed, but her labs indicated that her thyroid was still working but her body is saying otherwise.  Her orthostatic intolerance has gotten to an all time low.  I just recently had to up her Florinef to 1-1/2 tabs in the morning instead of 1, because every time she stands up, she passes out.  She's also been passing out a lot at night and I can't figure out why.  I'm tempted to give her 1/2 a Florinef to see if that helps.  The doctor won't treat her for her thyroid because her labs aren't all out of whack yet.  Guess she's got to be dying before treating her.  Her ultrasound also showed that she has a nodule, too, that she has to have biopsied due to it's size.  She's not looking forward to that.  Today is her one year anniversary of her major spinal fusion last year.  It's been a rough road.  Some things have improved and some things have gotten worse. 

Back to the Hashimoto's, though.  How do any of you handle your symptoms and treatment?

[dizzytizzy]

I have Hashi's. Would you mind posting her lab results and reference ranges?

I find that a lot of doctors will say thyroid is normal, though it may not be optimal. There's a big difference IMO!

I was dx'd in 2014 and had been well-controlled, but when everything with auto dys started up in January, my thyroid has been off. Waiting on an appt so we can adjusts my meds. I feel like Hashi's makes the auto dys worse and vice versa. 

[StayAtHomeMom]

If the doctor won't treat her hashi's see if another will. There has been a correlation between autoimmune issues and autonomic dysfunction. My sister in law had nodules (biopsies inconclusive), cold defects, but fine blood work. Took her 3 doctors before one would remove half her thyroid. That was over five years ago. She just had to have a biopsy again recently. When I get a chance I am gonna research the blood tests she needs to prove hashi's. I think she may have it. But doctors always say her thyroid is fine. 

[Guest KiminOrlando]

Agree. I have Hashimoto's too. Third endocrinologist was the one to treat it. My third endocrinologist was a woman. What she told me was that the 'normal' ranges printed on the bloodwork are normal for men, not women. Women need a much lower number for TSH. Most doctors don't realize that, therefore, many women have undertreated or untreated thyroid problems. If you are ok posting the numbers, you will get feedback. You may need to find a female endo. Of course, there are some bad ones too.

Kim

[DizzyGirls]

Thanks ladies!!  This WAS a female endocrinologist who also stated that these are very reliable tests.  Well, how many of us have heard that before!!  I should have thought to post her labs, but here they are:

TSH - 4.34

T3 Total - 113

T4 Free - 0.9

Cortisol - 15.7

A couple of weeks ago these labs were run:

TSH - 2.48

T4, Free - 0.9

AntiTPO Ab - 32.1

ANA - 1:160

Btw, do any of you have bad muscle spasms?  My daughter has horrible spasms.  So much so that it restricts blood flow to the brain and she passes out from it, much too often.  She has hair loss (a lot), weight gain, cold all the time, dry skin and hair, constipation, debilitating fatigue, etc.

[Pistol]

I agree with what others have said - get another opinion. They have to put 2 and 2 together: abnormal labs AND debilitating symptoms is - in my humble opinion - a reason for treatment necessity. Once a EP told me that I do not have POTS because of a TTT result, completely ignoring my symptoms. In the end I had hyperPOTS and was treated but I had to find another Doc. It appears that this doc is more interested in numbers than in the obvious illness of your daughter. --- My cousin had nodules on her thyroid, it was cancer, they removed her thyroid and irradiated it and she is doing great. My mother had thyroid issues, they irradiated hers and she is fine. I wish it could be that easy for your daughter! --- I am keeping you guys in my prayers!

[MomtoGiuliana]

Yes I have Hashimoto's as well as POTS.

[StayAtHomeMom]

I would definitely get a second opinion. I don't remember all of the ranges for thyroid stuff but the high side of tsh is 5. If I remember right a lot of doctors don't find that concerning until 10. But considering her symptoms they should be willing to try to treat her. Symptoms plus tests should be enough to treat. Good luck. 

[dizzytizzy]

@dizzytizzy: If you have the lab's reference ranges, those are good to include too. 

I know my doc says TSH should be closer to 1.0 for patients already on thyroid replacement (and for people not on replacement therapy, anything over 3.0 is generally a sign of underactive thyroid) and you generally want the Free T4 and Free T3 to be in the upper 1/3 of the reference range. 

The problem here is that the doctor didn't even run Free T3, instead she ran Total T3. Free T3 is the amount of active thyroid hormone circulating in your blood - essentially, the amount available to be used by the body. Also, when testing thyroid, I always do my labs first thing in the AM, fasting and before taking my meds. I mainly do this so that I have consistency across all the thyroid labs and can more quickly spot changes as thyroid hormones can and do follow a diurnal pattern. 

And while it looks like the doc tested for TPO (thyroid peroxidase antibodies), she didn't test TGaB (thyroglobulin) antibodies. These are often elevated in autoimmune hypothryoidism AKA Hashimotos.  

Were these labs taken at roughly same time of day?

[Guest KiminOrlando]

Women's TSH should be around 1 as stated by Tizzy from what I understand. I would get a new doc. Your daughter's Hashimoto's is not under control in my opinion. It seems this is a less than desirable doctor. 

Ditto on the Free T3. Was she lazy or not thorough?

Grrrrr....

Keep going, Mom!

I'm currently at the doctor myself. My new Pulmonologist just told me to lose weight. Go outside and start walking. I told her, "You do know I pass out when I get hot or stand up for too long, right?" When I first came here I was in a wheelchair. I'm quite proud of my progress. 

Now I am in the Rheumatologist's waiting room. Not sure I like my new Pulmonologist. 

Grrr....

Kim

[Anamaria]

I also have Hashimotos and I’ve often wondered if that’s what is causing my POTS and other Dysautonomia symptoms. My General Doctor said that it isn’t effecting my levels as of yet but she is considering putting me on a low dose of thyroid meds to see if that will help. I have an appt in a few days to discuss that option. I hope your daughter starts feeling better soon. I can really relate though because my body is all out of whack and my levels are still fine. 

[DizzyGirls]

Sorry for the slow reply, my daughter is feeling really bad today.  Lots of vertigo, neck pain, headaches, and really hard to keep her conscious.  I've been giving her 1-1/2 florinef in the morning and I gave her 1 this evening because she kept feeling lightheaded and almost passing out.  But, her pain is really bad and it's getting harder and harder to keep her conscious, especially in the evening.  She said it feels like something is cutting off the blood supply to her neck.  When she turns her head to the right, it triggers a migraine and tremors.  This is the side that she also has the thyroid nodule on.  It's 2 cm the doctor said.  The biopsy is early Sept.   She has an MRI of her head and neck in a couple of weeks.  Maybe that will show something.  Also have an appt with her neurosurgeon the following week to see how she's doing a year after her spinal fusion.  I feel like saying to him, "about that thyroid, doc".   We have doctor appts scheduled into October already.  About 1 major appt (excluding PT) a week.  I call the ones at Stanford "major" ones.  Not just PT or something simple.  She actually has one in January for the cardiologist at Stanford that specializes in Dysautonomia.  We made it about 2 months ago.  Anyway, thank you for all your help and if you all think of anything else, please let me know.  : )