Hypothyroidism Causing All This?...

[Heckofagal]

I was just wondering if anyone on here has discovered that hypothyroidism is the cause of their dysautonomia symptoms.

I was very, very sick in the fall of 2006 and it was discovered that I was hypothyroid. My biggest issue was with dizziness. I know my TSH was 7.1 then but I'm not sure what my Free T3 and Free T4 numbers were. Synthroid, blood pressure meds and acid reflux meds helped me feel better, but I could tell there was still something wrong. I found a naturopath who added Cytomel, B12, Vitamin D, adrenal supplements and tweaked my meds to bring me back to mostly normal. I've had issues on and off through the years and have had meds titrated up and down. Always very sensitive to med adjustments and reluctant to switch to Armour or another Natural Dessicated Thyroid med, but I've considered it many times over the years.

That brings me to now. Have had many bad days lately and reaching an all time low. Had my thyroid numbers checked in July and my numbers were probably the lowest I've ever seen them since I started tracking in 2007).

FT4: 1.0 (.8-1.8) 20%

FT3: 3.0 (2.3-4.2) 36.84%

All the thyroid forums say I need to be in the upper third of the range to feel optimal. I'm wondering if the 20% and 36.84% are bringing on my dysautonomia symptoms.

I'm thinking about having my meds changed to NatureThroid.

[MomtoGiuliana]

I have both Hashimoto's and POTS. I do believe they are somehow related bc they both seemed to develop simultaneously. When my thyroid is out of whack my POTS symptoms tend to get worse. It's a mystery that I have yet to have an answer for. I also had severe POTS during pregnancy.

Synthroid has worked well, for me, for the most part. I am not sure what my FT4 and FT3 numbers have been and they have not been measured for awhile. And these days my POTS symptoms are minimal. I know I feel best when my TSH is around 2.0. Is your TSH in the low "normal" range? I know the prevailing guidance used to say that a TSH of 3 or 4 is OK but I think now that is treated as hypothyroidism? Not sure, I am not so up on this topic as I used to be.

If your endocrinologist or other doctor treating your thyroid condition is open to it, trying another treatment might make sense. My endo was not open to me trying a T3 (natural thyroid) treatment when I asked years ago. He said it is much less stable than synthroid and I already seem to have some instability with my levels (that may not be the case now but seemed to be then). Since too much thyroid hormone can cause tachycardia and irregular heart beat, he was concerned about exacerbating that problem for me.

[kellygirl]

I have had hypothyroidism for over 20 years, over the past 4 years I have had an unstable thyroid, where my TSH level has fluctuated from 0.23 to 30 and have had to have numerous medication adjustments. In July when I was admitted to the hospital and diagnosed with POTS/autonomic dysfunction, my TSH was 30. The endocrine team at the hospital told me that although my thyroid was severely underactive at the time it was in no way responsible for the autonomic dysfunction. In fact autonomic dysfunction symptoms are often confused with hypothyroid symptoms, heat and cold intolerance, excessive sweating, visual disturbances, gastrointestinal distress, constipation etc... that the autonomic dysfunction was occuring concurrently with hypothyroidism. In fact they told me that a TSH level of 30 was the least of concerns at that moment. I just had my TSH level rechecked 2 weeks ago and it has only come down to 17.5 since July with two medication adjustments. In my case I think (I have no proof other than that nothing else is wrong with my thyroid or parathyroid or adrenal glands) that the autonomic dysfunction is making my thyroid more resistant or slower to respond to medication adjustments.

[Heckofagal]

MomtoGuiliana - Yes, my naturopath treating my Thyroid issues wanted to put me on Armour years ago when I first started seeing her, but she understood my reluctance. And we have discussed it several times since then. At my last appointment she said when converting people over she likes to do it in stages instead of all at once. And my TSH has been suppressed for years since I am on T3 meds. .01-.02 and I am not hyper although I had hyper symptoms last year so we titrated down. Now we need to titrate back up. And I think that stuff about natural thyroid meds being unstable is a myth.

Kellygirl - I'm so sorry to hear of your struggle. What meds have you been taking? Do you fluctuate between hypo and hyper? How can the endocrine team be sure that the autonomic dysfunction was not caused by the thyroid? It seems coincidental that the symptoms emerged when your TSH reached.

I appreciate your responses!

[Anoj]

I have had thyroid disease since I was 10 years old. My dysautonomia didn't develop until late 30s. I wouldn't say they are unrelated, but I can definitely tell the difference between thyroid fatigue and POTS symptoms.

[kellygirl]

I started taking levothyroxiene in my mid twenties when my thyroid blew from Lithium Carbonate toxicity (treatment for bipolar mania). I stayed regulated for over twenty years on exactly the same dose. Four years ago I started having wild fluctuations in my TSH levels. Because I have been on different psychotropic medications at one time or another for mood control I have to get thyroid testing monthly because psychotropic medications suppress the thyroid. The doctors then switched me to Synthroid. My optimal functioning is at 0.23 but when we moved my new primary did not listen to me and said that I was experiencing hyperthyroid when I was at 2.1 and lowered my dose. During that one month that my dose was lowered my TSH shot to 30.

The doctors at the hospital that diagnosed me with POTS retrieved my medical records going back to 1999. After reviewing chief complaints and various labs and other medical conditions they determined that the autonomic dysfunction has been progressively occuring for at least 15 years. I have been off of all previous meds including psychotropics for "bipolar disorder" and anxiety since July and I have had no mood swings. The way my EP explained it to me is that alot of people present to doctors with various symptoms and the docs diagnose them with psychiatric disorders or anxiety disorders.. when we are anxious for a reason (like feeling like we can't breathe on our own, having a sense of unrealness (which sounds psychiatric) but it is NOT (in all cases). Endocrine said my POTS symptoms feel worse when my TSH level is high and it will exacerbate POTS symptoms. My T3 and T4 are always normal despite high TSH. I also had extremely high levels of cortisol in my system. The thyroid gland itself is without nodules, nothing wrong with the parathyroid. No tumors. No adrenal, or pituitary problems.

[kellygirl]

Just to give you an example of chief complaints that I presented with over the years:

Heart palpitations and racing heart... diagnosed with SVT

excessive sweating (multiple times)... hypothyroid

sensitivity to cold... extremities cold... the rest of my body hot... hypothyroid

shortness of breath... anxiety

sense of unrealness or alteration in perception of my sense in space... anxiety

nausea (multiple times)... given zofran... never followed up on

constipation

feeling like I am going to expire on the spot.. like a black curtain is being pulled closed... (anxiety)

blurred vision (hypothyroid)

dizziness (multiple times)

numbness and tingling in arms and fingers (anxiety)

I even had my long term primary tell me to ignore 99% of what I am feeling 99% of the time because 99% of the time I am imagining it and it is psychiatric in origin. I am more inclined to believe the use of psychotropic medications over the years has brought about my POTS. Since I have been off ALL meds since July my mood has been more stable than it ever has been and slowly my POTS symptoms are subsiding, but on the few occassions I have resorted to taking my "old" sleeping pill (temazepam) my heart rate and POTS symptoms get much worse and it takes me 3 to 4 days to recover from taking a pill.

Previous meds before the diagnosis were. Synthroid, seroqeul xr (mood disorder/anxiety), baclofen (muscle pain), temazepam (sleep/anxiety), atenolol (SVT)... now I am down to just synthroid.