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Hashimoto's And Pots


khaarina
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I have been noticing that a lot of people with POTS have Hashimoto's Thyroiditis, so I'm wondering has anyone noticed a significant improvement in their POTS symptoms upon successful treatment of Hashi's or vice versa? What treatments (for either disorder) has worked for you and what made you feel worse?

Here is my account regarding treatments in case other Hashi's or POTS patients are interested:

I reacted badly to Levothyroxine so I switched to Armour. This made my thyroid labs look better, but I don't feel better, well better than on Levo, but not well at all. Kelp and L-Tyrosine didn't seem to do anything at all. I'm about 3 weeks into Florinef and not doing well (headaches, insomnia, fluid retention). My tachycardia and self standing tests improved, but overall symptoms didn't. Atenolol seems to help my tachy and I felt terrible when my doc told me to cut the dose in half, so I went back up to 25mg and have been there about a year. Anti-depressants were a flop. Most did nothing, Paxil made me a zombie even a a very low dose. I was on Clonazepam for a time and I did notice a significant improvement. I think high adrenaline is a big problem for me. I stopped taking it though because I was concerned about long term affects. Sleep is a big problem for me and only thing that helps is Benydril and Ambien. The others I've tried were OTC sleep aids and Trazodone. When I was having nerve pain nothing helped. I tried Tramadol, Nortriptyline, Cyclobenzaprine, Tylenol 3 (the latter made me nauseous). Thankfully, the nerve pain eventually went away on its own around the time I started treating my thyroid (hmmm). I got a shot of B12 for energy, but it did absolutely nothing. I took Hydroxyzine once for chronic itching and it made me severely irritable, my husband called me crazy. I stopped that immediately. Once, about 5 years ago, I had a permanent birth control procedure (Essure) done and they gave me Epi-Lidocain and I had a severe reaction right there on the table. Heart racing/pounding, total body jerking, hyperventilating, I felt like I was going to die. I think some of this is normal, but to the extent I had it, definitely not. This was long before I knew anything was wrong with me. Also, I learned recently that I am allergic to Sulfa now, and I have outdoor allergies and sensitive skin. Growing up, I was never allergic to anything. I used to make fun of my step sister because I could roll around in poison ivy and not get it but she couldn't go within a few feet of the stuff. I even tried going gluten free for a month fairly recently. No effect while I was off gluten and no affect when I went back on it.

So that's about everything I've tried in the past year and a half. Some wins (sort of) but mostly fails. Would really be interested to find out what works and what didn't work for for others with both Hashi's and/or POTS.

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I hope I can help on this topic as I have experiemented as well with most of the things you have and have been on Thyroid meds for the lasy year so here is my two cents on the matter I guess you could say.

So, the wondrous journey of Dysautonomia! I think we have all at some point tried almost every med you have listed except for I think a very small percentage of us that have experimented with Thyroid Meds so i will comment mostly on that in this reply.

I was sick sick sick. Couldn't even keep an even heart beat or a solid breath for that matter. When I initially went to the Docs they all kept asking me "Have you had your Thyroid checked? Have you had your Thyroid checked???" I mean, It was incessant. But each time I said yes I had it checked and was told it was fine and that was the end of that.

So then of course this is when I went on my carousel of meds; experimenting with everything, Lexapro, Prozac, Propanolol, Metoprolol, Vitamins, Magnesium, Zoloft, Effexor, you name it I've tried it.

So that brings me to the Thyroid. Well in the back of my mind i must say I was always thinking about those Thyroid numbers and then just so happens i stumbled across an article about people with Dysautonomia (They didn't call it this in the article but I recognized what it was from the symptom list) who had Thyroid disease. So of course I raced back to my labs that i had kept and googled my numbers, which my highest TSH had been 3.48.

Well then I find all this new info about how any TSH over 3.0 is suspect of Thyroid Disease, I thought i had cracked the case! I went to my Doc immediately, pleaded my case, showed her all of the information I had found and she was totally game to do a trial run of Synthroid to see how I reacted. Her words were, "its not going to kill you, that I know for sure. And if your body doesn't like it, we're going to know right away. " I should say that my symptoms had always been on the hyper-pots in of the spectrum so the Thyroid meds seemed counter-intuitive as they speed a persons body up more, so it was definitely a shot in the dark if it was going to work, or just make me worse.

So I started on a low dose of Synthroid and I think by the 5th day I remember vividly crying in the shower because it was the first time I had felt a moment of normalcy, in , what felt like forever. Now this didnt last but I had some glimmer of hope in this moment. So time passed and the Synthroid worked and didn't worked on various parts of my illness. Some symptoms it created were totally new. So after about 2 months of Synthroid I asked to be switched to Armour and that has been better in regards to not adding any new symptoms that were intolerable.

With Synthroid I started to have Menstrual cramps throughout the entire month. So obviously that wasn't good. On Armour my only symptom that I still struggle with (now 9 months on meds) is I can feel when the T3 kicks in and I don't love it because it feels like an adrenaline rush. This also messes with my emotions and mental state because its an up and down, but i was having that without the Thyroid meds on my own with my natural adrenaline surges. Also it is very hard to get the dose just right, when I'm on too much I feel like my hunger sensation is confused and I can eat a ton of food and still be hungry. So, It's trial and error still for me.

Now don't get excited as I am by no means healed with just the thyroid meds. i am still very much in this Dysautonomia boat. But it has helped with some of my symptoms pretty dramatically. My Cardiologist believes that it's just essentially throwing a rock in the bad feed-back loop that my body has created. He doesn't think that my body actually needs the Thyroid meds in the primary sense of a normal thyroid patient. He thinks its secondary. Now, my Dysautonmic specialist says differently and says that it would be more weird if I didn't have a thyroid problem and almost all Dysautonomic patients need some form of Thyroid therapy. My general practitioner also agrees. Her argument is if i didn't need it, Thyroid meds being a stimulant, my body would have totally freaked out by being stimulated more!

So long and short I have benefited. It has not been the cure all, but it has helped. The thing is you have to be super duper patient with it, starting at very low doses and be vigilant with the time you take it during the day. I was taking it in the morning but found that made me more symptomatic so i switched to the afternoon.

p.s. I'm not sure what your numbers are but thats a lot of Armour your on did you work your way up to that? just curious.

hope this is helpful!

ashley

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I did work my way up to 60mg Armour. I started at 30mg after switching from Levothyroxine, and gradually went up over the period of about a year. I'm actually concerned that I'm not on enough. I've read that with Hashi's, you need to be on a pretty high dose to stop the antibody attack, and that some people, especially those with other illnesses like POTS, need their TSH to be closer to 1, so I think mine could be better. I suspect that what Hashi's/POTS patients really need is to stop the attack on the thyroid. Between the hyper rushes and the hypo results, this thing is really screwing me up. Easier said than done, I know. I stopped kelp and started Selenium yesterday, and I'll report if that makes any difference. I've also been reading about Low Dose Naltrexone, but it is very controversial and all the "wonder drug" boasts are making me wary.

By the way, like you, I also had my thyroid checked and was told it was normal. I insisted when I first got sick because my mom is hypothyroid. It was several months before they checked it again and found that I was hypothyroid. Then it took me a year to convince my doc to check for antibodies. He totally didn't see the point in knowing and when it came back positive, he didn't see the relevance. It seems that, like POTS, docs are not familiar enough with thyroid problems, so we are really fighting an uphill battle!

My current labs are:

TSH: 2.5 (.450-4.5)

T4: 6.3 (4.5-12)

T3: 89 (71-180)

TPO: 81 (0-34)

Antithyroglobulin Ab: 639 (0-40)

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Well I have not been diagnosed with Dysautonomia yet, but my symptoms keep leading me to this site.

I was diagnosed with hypothyroidism about 7 years ago, and a naturopathic doctor helped get me back to health with a combination Synthroid and Cytomel and other supplements. I've had a few ups and downs over the years and have really struggled the past 2 years or so, having 8 thyroid med increases. It is my understanding most people feel best when their FreeT4 and FreeT3 are in 60-80% of the range and I seem tobe close, but definitely not feeling great yet. Currently I am taking 200 of Synthroid and 17.5 of Cytomel daily, along with adrenal supplements,Prevacid, metoprolol (high BP), b12, Vit d, magnesium and melatonin to help sleep.

Many of my symptoms are better, but many days I just feel like I could pass out.

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