The Autonomic Neuropathy Started Worsening....but Finally Found The Reason.

[Maiysa]

Since the end of December I have not done much of anything. It's been hard and a bit of a downer but I did my best to stay hopeful. My migraines became daily and I wanted to just give up on some days. I started having muscle jerks which scared the bejeebers out of me. There was an ongoing pressure in the back of my head and standing up was difficult. The fibromyalgia pain was at an all time high. And my feet and hands and shoulders started falling asleep from being in one place for just a few minutes. Anyhow, went to the doctor and he ran some tests, my thyroid TSH was at 11.3. I have to keep my thyroid in the hyper mode because of thyroid cancer, so I went from extremely hyper to hypo. I was told that hypothyroid and hyperthyroid also, can make dysautonomia worse. So at least I know and it's an easy fix, just more medication, but will take a while. They think the large amounts of iron I am taking is interfering with the thyroid absorption. So now I know, and am, already after a week of more synthroid, am able to get up and around. Was able to go to lunch yesterday. Yay! AM on my way to just mediocre autonomic neuropathy instead of severe.

[issie]

Maiysa,

So glad you got it figured out. People don't realize how bad our thyroid levels can affect how we feel. It regulates so many other hormones than just our thyroid function. I know it will take a little while to get your dosage figured out, but - at least you can already tell improvements. So happy for you.

Issie

[HopeSprings]

It's not too often we see a post that says "I found the reason why..." So glad you did!

[jenglynn]

Oh my goodness... That's awful! I'm so glad you found out WHY! My thyroid is a mess- TSH is hyper and T3and T4 are hypo- and my autonomic neuropathy has been debilitating the last 5 months or so. I wonder if my thyroid is making it worse? No one wants to mess with it and every endo I've seen just tells me I have "sick thyroid" meaning my thyroid is fine but out of whack due to my autoimmune disease attacking my autonomic system.

So after a week you have already noticed improvement! That's wonderful for. Frustrating you've been suffering all this time and it was a relatively simple fix but better late than never I guess (not to make light of it at all). I'm so happy you are doing better. I am really struggling as well and the muscle jerks scare me so much as well.

Keep us posted on your continued improvements!!!!

Jen

[Katybug]

Maiysa,

So glad you have a path to follow again. You have already been through so much that I'm glad this was a pretty easy answer.

[DoozlyGirl]

Maiysa,

Glad to see you are piecing together some things. I, too, did better with my autonomic neuropathy when my T4 -thyroid hormone (Levoxyl) was upped. I often wondered if I would do even better with some T3. Within days aof starting Armour thryoid, I went into anaphylaxis, so the natural T4 and T3 option is out for me. If you decide to lookin into T3, the recomended dose is 1/4 of your T4 dose.

Good luck, keep us posted, Lyn

[Maiysa]

Thank you so much for the support Issie, Naomi and Jen. It's been a long three months, but so grateful.

Jen, I'm sorry to hear you have autonomic neuropathy. I feel for you. I hope you could possibly find a doctor who is able to realize that these two issues are very connected and possibly making you feel terrible. This is what the doctor told me, and I quote, he said, "Okay, you have a TSH of 11.3, so you basically have zero thyroid working in your system. You are extremely hypothyroid and this will only exacerbate your autonomic neuropathy condition. And we also don't want you to be hyperthyroid as this can also exacerbate the neuropathy as well. So let's try to get you to a more normal level since your cancer was a very weak type" (have to be kept hyperthyroid as it keeps the thyroid from growing back as well as the cancer cells) But the doctor said the autonomic neuropathy is more detrimental to my health than the cancer I had, so we are taking a chance by letting my thyroid get to normal, but like the doc said it was a very weak cancer. They also told me that they will test my thyroid every 6 weeks instead of 3 months because the of the autonomic neuropathy. So if your thyroid is off, this could definitely cause your situation to be miserable and possibly worsen. Also, I went to the neurologist and she told me the same thing about the thyroid as the endo did. Another thing, I had a very sick thyroid from 2006-2008 and I was extremely ill and fading fast. They said the thyroid also became toxic, possibly with a fungal infection as well, which made me feel more sick than the cancer did. I know this because they took the cancer thyroid lobe out first and I only got worse. Three weeks later within hours of taking out the entire thyroid and the toxic thyroid, I felt much better, but of course I still have a ton of issues, but that was a bad one. And it's only been about 12 days since they upped my thyroid medication and I do notice a difference, of course I still don't feel well, but I was really really sick. I'm still extremely tired but hopefully it will get better. And please do make light of my situation, or else I will feel sorry for myself. haha. I always make light of it, it makes me feel better. Jen, I hope you can get your thyroid under control soon. I feel for you! Have you always had muscle jerks? This used to happen once in awhile and since the thyroid has plummeted, it's a few times a day. I hope this goes away. it is scary isn't it. Good health to you!

[Maiysa]

Hi Lyn,

Gosh it sounds like everyone is struggling with their thyroid. It's so strange. Anyhow, my TSH is really high, not sure about the T3 and T4. I have to be on thyroid medication because they took my entire thyroid out, so I have to take a lot. But that sounds terrible that you went into shock from the Armour. I didn't know that was possible. But I understand because I react to the strangest things that naturally occur in my own body. Anyhow, they just put me on synthroid, about 100 mg.'s a day. But I still feel tired. Doc said it is the only brand that they have found that gives a consistent dose. So I'm on that now. Also, I see you also have MCAD, and I'm sure we've talked about it. I forget everything. But I just wanted to tell you that the doctor I went to about MC said that it can cause some thyroid issues. I never asked much about it, but I always wonder if that's why most have troubles with their thyroid. Some type of Mast Cell issue? Hope you are doing well. PS I hope this makes sense, I'm sooooooo sleepy.

[Sif]

So glad you found out about your thyroid and you're starting to feel a bit better!

It's interesting that you mention that thyroid problems can make neuropathy more severe. My POTS hit me a few months after becoming severely hypothyroid because I had Hashimotos and didn't know. TSH was 270 and I was hospitalized for a bit since I basically had no FT4 left.. truely though I was dying! My thyroxine took ages to work and it took 6 months to get my TSH under 10.. it just finally came back into range this month, yay! Not feeling much better for it though.

[DoozlyGirl]

Hi Maiysa,

Thought I'd share a bit about thyroid hormones to add ot your research. There are 4 types T1, T2, T3, and T4, which indicates the number of iodine molecules attached. T1 and T2 float around waiting to be picked up to make a T3 or T4. The body uses T3 in the tissues, but synthetic T3, brand name = Cytomel, is not very stable and has to be taken several times a day. Levothyroxine, brand = Synthroid or Levoxyl is actually T4, and is more stable. But some people can't convert T4 to T3 and need to also take T3 in addition to their T4. Traditional docs believe that Synthroid is the ultimate answer, but docs who think out of the box firmly believe that T3 can help with any residual thyroid issues once you are on a optimal dose of T4/Synthroid. It does take 4-6 weeks for the Synthroid to level out. Hopefully your fatigue will go away.

My post mentioned T3 doses. So let's say, if you are taking 100 mg Synthroid, a typical dose of T3 would be 25 mg. Armour Thyroid contains both T3 and T4, and many natural minded physicians tend to prescribe it over Synthroid. I now now my anaphylaxtic reaction was related to MSG triggering my mast cells, but I know that the Armour was likely involved with aggrivating my mast cells. My reaction happened the day after I upped my dose, and I could feel the tachy come on with that upped dose.

When you have your blood tests taking in the future, you'll want to have TSH as well as FT3 and FT4 taken. TSH stand for Thyroid Stimulating Hormone, it is actually a hormone released by the pituitary gland, but it estimates hormone function. T3 and T4 can be tested as 1) Bound, which means with the carrier protein, and is reported as Total or TT3 or TT4 or as 2) Free, meaning without the carrier molecule and reported as FT3 or FT4. The FT3 is often considered the best assessment of thyroid hormone that is readily available for the body to use.

I hope that you see dramatic results from your upped T4. I am curious, what was your previous dose?

Best wishes,

Lyn

[Maiysa]

OH my gosh....Sif, this is a high number! You poor girl. That's awful. The docs were supposed to give me thyroid medication 3 days after they removed my entire thyroid, but due to lack of communication between the doctors, I fell between the cracks and it took 2 months to get into a endo doc. So from June 4 to end of August, I was living with no thyroid and no thyroid medication. At first I felt better within hours of surgery, but then in a few weeks I started fading and soon that dying feeling came again. When I finally got into the doctor they couldn't believe how hypo I had gone and told me that I could go into shock, so they treated me right away and kept a very close eye on me. Anyhow, it was awful. I don't know what my TSH numbers were, but I do remember TSH being at 80 after a few weeks of medicating me, but I didn't think 270 was possible. Wow...How did they let it get so high?! Or did it just take a long time to realize this was the issue? Do they think this is the cause of your POTS? I know what you are saying about normal numbers, even at normal range I don't feel well, but nothing feels as bad as when it's out of balance. For autonomic neuropathy patients, I was told the out of balance numbers can cause nerve damage, so I get really messed up with just a little bit of out of balance. I'm sure this also affects your POTS as well. Is that true? Good health to you Sif!! Hang in there.

[Maiysa]

Lynn,

Your brain amazes me that you are able to remember all this information and keep it straight. Thank you for the information, as it unscrambled the T3 T4 situation. You are so good. Also, the endo did a full thyroid panel and didn't mention anything that was abnormal, but I think the T4 was slightly abnormal if I remember right, but not positive. I was taking 88mg of levothyroxine, but only 6 days a week and nothing on the 7th day because my TSH was stuck at .06 for over a year and a half, which was making the dysautonomia worse than ever, as I'm sure you can relate to this. I hadn't changed my medication at all, so for TSH to go to 11.3 was strange. So that's how the doc came to the conclusion that it's the iron that's blocking absorption, because I just started taking large doses of iron right after my last thyroid panel. Also, thank you for telling me that my thyroid will take 4-6 weeks to level out because I was going to call the doctor to ask how long this extreme fatigue will be around. So only, 2 or 4 more weeks to go. But I'm still anemic which is probably not helping.

Thanks Lyn,

Maiysa

PS they are still trying to figure out my mast cell issue. Does the treatment for that help you with the dysautonomia at all? I can't take a lot of claritin, so not sure what will happen there. But one disease at a time, I'm saying to myself. haha