lithium experiences

[Iritu1021]

ah i see, thanks. yes they did the routine thryoid tests and they were normal.

i speak to my doc soon and i will ask his opinion. if he also says lithium can worsen us, i will stop the drug. at least i will be nice and thin again lol.
xo

If lithium works for your depression, you may alternatively talk to your doctor about adding thyroid to it. Many psychiatrists prescribe thyroid. Thyroid +lithium is actually one of the the most effective drug combinations for resistant depression. Besides, if your thyroid got worse on lithium, it probably means that it had to be treated to begin with - as your multiply nodules may imply. People with healthy thyroids usually have no problem tolerating lithium.
Did you TSH go up after you started taking it?

 

[Misfit Toy]

@Iritu1021 -I am reading your blog. WOW....so I had my thyroid removed, developed POTS and MCAS...high histamine. This is so unreal what I am reading. No doctor puts this together in any way. My T3 is in normal range, even slightly above and yet I am so sick. TBH, I am starting to give up. Above all or other illnesses I have, having my thyroid out has rendered me totally disabled. I was diagnosed with ME in 1989 and was never as sick as I am now.

I also can't take T4 due to an allergic reaction to it. Anyway, reading your blog -it's so nice to see that someone else gets it. I post on thyroid forums and no one has POTS or any of it from the thyroid.

Also, I have an iodine level of 0. Zero.

I am exhausted yet can't sleep and I suffer with depression. Major depression.

You are a physician. I will read your blog in totality. Ty. I hope this will help me, too. They also think I have EDS.

 

[Iritu1021]

@Iritu1021 -I am reading your blog. WOW....so I had my thyroid removed, developed POTS and MCAS...high histamine. This is so unreal what I am reading. No doctor puts this together in any way. My T3 is in normal range, even slightly above and yet I am so sick. TBH, I am starting to give up. Above all or other illnesses I have, having my thyroid out has rendered me totally disabled. I was diagnosed with ME in 1989 and was never as sick as I am now.

I also can't take T4 due to an allergic reaction to it. Anyway, reading your blog -it's so nice to see that someone else gets it. I post on thyroid forums and no one has POTS or any of it from the thyroid.

Also, I have an iodine level of 0. Zero.

I am exhausted yet can't sleep and I suffer with depression. Major depression.

You are a physician. I will read your blog in totality. Ty. I hope this will help me, too. They also think I have EDS.

@Misfit Toy , I'm sorry you had to endure it for so long... I know how hard it can be but hang in there and don't lose faith! I wasn't sure if I'd ever make it out but now I'm getting to the point where I'm actually starting to enjoy life again.

In my experience, there is definitely a connection between POTS and thyroid, especially as far as EDS is concerned. To me, from where I'm standing right now, the fact that nobody else seems to realize or recognize this connection is simply baffling, and that's why I felt compelled to write my blog. I've taken a break from it but I really need to get back to it and write the rest of what I have to say on this matter.

To put it in a nutshell, I believe that there is a connection between blood vessel function and T4/T3 ratio and between MCAS and prolonged excess of T3. And there is a link between T3 and depression. Too much T3 (even if it seems to be within the normal range in the serum) can really mess up your brain and autonomic function.

I used to have really bad reactions to T4 but now I'm taking 50 mcg of levothyroxine and don't even blink. I believe that lithium actually helped with making a switch in the way my body was reacting to thyroid hormone. Also Kenneth Blanchard's book "Functional Approach to Hypothyroidism" really opened my eyes on the subject of T3/T4 balance.

Feel free to PM or email me through my blog if you have questions.

 

[Daffodil]

@Iritu1021 youre a doctor??

 

[Iritu1021]

@Iritu1021 youre a doctor??

Yes, I'm board certified in Internal Medicine but I don't practice right now. If things keep improving for me than I might go back in the near future, especially when my kids get a little older. It's a stressful job and I don't want to overstretch my HPA axis too much too soon...

 

[Daffodil]

@Iritu1021 wow! i had no idea! an extra thank you for your help then lol

ok so this might have been discussed earlier in this thread but i have VERY bad brain fog and cannot remember much. How exactly did you improve?

xxo

 

[Iritu1021]

@Iritu1021 wow! i had no idea! an extra thank you for your help then lol

ok so this might have been discussed earlier in this thread but i have VERY bad brain fog and cannot remember much. How exactly did you improve?

xxo

You're welcome. I got better on thyroid hormone - though it took me several years to figure out how to use it the right way. When I was using it the wrong way I was just trading my CFS for POTS. Lithium might have played a part too although I don't use it anymore. I will post more about it on my blog and will update this thread when I do.

 

[Misfit Toy]

@Iritu1021 -I would PM you, but my story is so complicated. I literally can't take any form of T4. I keep trying it but I developed hives everywhere and a migraine. I have never in my life reacted to a medication like this. NDT's, compounded, you name it. My doctor gave me an IV or T4 and I was so sick from it. I am allergic or whatever it is...to this medication above all meds. I feel better on some T4 but I am saddled with only being able to take T3 and yes. I feel depressed on T3. Depressed and without empathy or emotions on it.

Again, it's something no doctor knows anything about. They don't get it or understand. They know so little about the thyroid and all of it's affects.

To put it in a nutshell, I believe that there is a connection between blood vessel function and T4/T3 ratio and between MCAS and prolonged excess of T3. And there is a link between T3 and depression. Too much T3 (even if it seems to be within the normal range in the serum) can really mess up your brain and autonomic function.

I agree with this 100%, I just don't know what to do about it. If I could go back, I would have never had my thyroid removed. I cry about it often and blame myself. I was told that you can't have a reaction to T4 and "tried" to believe it. I was reactive to everything before I had my thyroid removed.

Since having it removed, I am in hell.

I am glad that you are out of the thick of the woods. I so wish I could get there.

They also don't recognize the connection between tinnitus and thyroid. There is a site on FB for people with no thyroids who develop tinnitus. Docs know nothing about it.

 

[Daffodil]

@Iritu1021 did you improve very dramatically from addressing the thyroid? Do you think you even had CFS to begin with?

Thanks!

 

[Iritu1021]

@Iritu1021 -I would PM you, but my story is so complicated. I literally can't take any form of T4. I keep trying it but I developed hives everywhere and a migraine. I have never in my life reacted to a medication like this. NDT's, compounded, you name it. My doctor gave me an IV or T4 and I was so sick from it. I am allergic or whatever it is...to this medication above all meds. I feel better on some T4 but I am saddled with only being able to take T3 and yes. I feel depressed on T3. Depressed and without empathy or emotions on it.

Again, it's something no doctor knows anything about. They don't get it or understand. They know so little about the thyroid and all of it's affects.



I agree with this 100%, I just don't know what to do about it. If I could go back, I would have never had my thyroid removed. I cry about it often and blame myself. I was told that you can't have a reaction to T4 and "tried" to believe it. I was reactive to everything before I had my thyroid removed.

Since having it removed, I am in hell.

I am glad that you are out of the thick of the woods. I so wish I could get there.

They also don't recognize the connection between tinnitus and thyroid. There is a site on FB for people with no thyroids who develop tinnitus. Docs know nothing about it.

@Misfit Toy , I'm so sorry about your hardship, my heart goes out to you... I know how difficult to go through this when nobody believes you or understands. I'll keep trying to do what I can to end this ignorance, on behalf of all of us.

I did not have the same reaction as you did to T4 but I've tried it many times - after starting off the wrong foot with NDT- and failed many times and then I finally had success. My reactions were also very bad - extreme anxiety, my eyeballs would start buldging and get inflamed, I had blurry vision and brain fog and disorientation, and overall extremely unpleasant feeling that's hard to put in words - like my nervous system was crushing. And on high doses of NDT I had severe POTS and even myasthenia gravis - it was absolutely terrible.

Based on my observation, it seems that it might easier to add T4 if you make yourself hypothyroid first and bring your T3 as low as you can tolerate it - of course it might be harder for you since you don't have thyroid. However, it seems that having higher TSH makes it easier to tolerate T4. Also, I had to start with tiny doses about 3 mcg. Have you tried lithium orotate yet?

Please hang in there... I know you're depressed but blaming yourself will not help you make better, it will only drain your emotional energy and make everything worse. You had no way of predicting that this would happen so this isn't your fault! Most of us have taken missteps and made unintentional wrong turns that made us crash but forgiving yourself is a crucial step for recovery.

Yes, there is definitely a thyroid -tinnitus connection, I agree with you.

 

[Iritu1021]

@Iritu1021 did you improve very dramatically from addressing the thyroid? Do you think you even had CFS to begin with?

Thanks!

Yes, dramatically but it was a slow process that didn't happen overnight. It was also a huge learning curve on how to use it properly by relying on my body's intuition.
There was a lot of healing in my body and nervous system that had to take place, still does. There is no doubt in my mind that I had CFS. One may argue that there are different subtypes of CFS but mine started with fibromyalgia and progressed to dysautonomia. I was essentially bed ridden for several years. Brain fog was really bad, I could barely type an answer to an email. I also had very high EBV titers, the CFS specialist claimed they were the highest she's seen in twenty years of practice.
I had stopped taking thyroid a couple months ago as an experiment and just a couple weeks later I could feel myself sliding back into CFS and barely able to leave my bed. I started taking it and got better again within a few weeks.

 

[Misfit Toy]

@Iritu1021 -we brought down the amount of T3 to 25 mcg and I got much sicker. We then upped the T4. We have tried minute amounts of T4. I have hives all over from T4. The reaction is hives, migraine and insomnia so even my functional medicine doctor is against me trying it anymore as my reaction is too severe and leaves me bed bound.

Last summer, due to a reaction to T4, it spun my body so far out of control that I was only able to eat 8 foods all last summer due to T4 and trying to start it again.

Thank you for your understanding and telling myself not to blame myself. I try. I think I am just so devastated and like you said, no one...I mean no one gets it. My doctor does, but he has no idea what to do.

 

[Iritu1021]

@Iritu1021 -we brought down the amount of T3 to 25 mcg and I got much sicker. We then upped the T4. We have tried minute amounts of T4. I have hives all over from T4. The reaction is hives, migraine and insomnia so even my functional medicine doctor is against me trying it anymore as my reaction is too severe and leaves me bed bound.

Last summer, due to a reaction to T4, it spun my body so far out of control that I was only able to eat 8 foods all last summer due to T4 and trying to start it again.

Thank you for your understanding and telling myself not to blame myself. I try. I think I am just so devastated and like you said, no one...I mean no one gets it. My doctor does, but he has no idea what to do.

Yes, that sounds tough... Seems to me like T4 goes straight to T1AM/TA/ histamine in you - perhaps due to this connection:
http://www.chronicfatiguediagnosis.com/2018/02/26/t1am-and-histamine-connection/
The only other thing besides lithium orotate that I can think of right now for you is maybe trying TRH nasal spray to raise TSH (I presume that even on 25 mcg of T3 your TSH was still suppressed?) I've never used it myself but I read about it in Goldstein's book on CFS and it also appears to be a very effective therapy for depression.

 

[Misfit Toy]

@Iritu1021 -I am on 65 mcg of T3 due to having no thyroid. When you have no thyroid the normal amount of T3 is usually between 75 -100 mcg. My TSH is about .01 due to the T3.

I actually like lithium orotate. The pill bottle says that one pill is 138 mg. (Providing 4.8 mg of elemental lithium.). That seems like a high number...right?

I will have to look up TRH. Not sure what it is. Will send you a PM.

 

[Iritu1021]

@Misfit Toy , I added another post about my thyroid/dysautonomia experience.
http://www.chronicfatiguediagnosis.com/2018/05/23/thyroid-hormone-my-friend-my-enemy/

 

[Misfit Toy]

@Misfit Toy , I added another post about my thyroid/dysautonomia experience.
http://www.chronicfatiguediagnosis.com/2018/05/23/thyroid-hormone-my-friend-my-enemy/

TY, Iritu. I will most certainly read it!