Paula,

The odd thing about it is YO PD is so rare in first place and even more so for women because estrogen supposedly "protects" us, so I figured that failed...what else is going on? Then I remembered I was a bit plump in my 20's couldn't lose the weight, brittle nails, convinced by my family I was hypoglycemic, depressed...most likely hypothyroid. I was tested and numbers were slightly lower than usual. I didn't feel much different on replacement hormone, so I quit taking it. I have read that sometimes one has to take T3 and T4 supplements to feel normal. Hmmm...

Anyway, I wonder if this thyroid issue doesn't make us more vulnerable for neuro disorders? I have read that usually when we end up with thyroiditis post partum that it was usually already there...

It is believed that women who develop postpartum thyroiditis have an underlying asymptomatic autoimmune thyroiditis that flares in the postpartum period when there are fluctuations in immune function.


There is a really informative brochure at Thyroid.org

Given that absolutely no one until Brin and 23andMe took initiative to collect data on us, some connections may start emerging that should have been looked into years ago :P

Laura

well the doctor makes a hyper or hypo thyroid sound like a piece of cake/just take this pill for life. I was about 37 and it bothered me that I needed medicine for life! It's been losses ever since.

Anyway, i will ask about parathyroid next visit. Wonderfully helpful information.

tks,

In general I have read that autoimmune disease is 8 times more common in females than males. (although this may be changing with the increasing gluten intolerance situation)

When a woman is pregnant, she secretes very high levels of cortisol, and typically if an autoimmune condition was present before the pregnancy it can be suppressed. RA is one example which can go into remission during pregnancy.

Then when the cortisol levels fall rapidly after delivery, the autoimmune illness will return. This is when thyroid issues may begin as well. It is thought that minute amounts of fetal cells may get into the maternal blood stream and create autoimmune reactions eventually. Many women become hypothyroid after a pregnancy.

Hashimoto's thyroiditis is a severe form, and it has an encephalopathy that can result as well, in the brain.
I know my thyroid was quite enlarged after delivery and it was several years later, I was found to have damage and required levothyroxine.. which I still take today.

I am rH negative as well, and had 2 rHogam shots --one after an amniocentsis, and one after delivery, because my son was testing rH positive. The rH factor might also be in the mix, IMO.
I had a C-section, and I think those are pretty messy, and might release fetal blood cells from the placenta as well.

Thanks for this information; it gives me a much more informed context for what may be going on with me.

Hashimoto's Thyroiditis: If any one is interested this is a SNP tested by 23andMe. I am at an elevated risk for Hashimoto's.


I also am rH negative and had only 1 rHogam shot (it was pretty darn painful and made darn sure the kid's rH negative dad presented with a blood typing). Never thought that could make a difference. I had the C-section too because my stubborn little guy was breech. All does seem to factor in.

I can definitely see that I might have an underactive thyroid at this point, but I wonder how it is I could also be having episodes very, very similar to Rick's which are a result of Thyrotoxosis?

Laura

i am also Rh negative; had 1 shot - my second daughter is also Rh negative.

rick is there a difference between your episodes and what they are describing as a 'thyroid storm'?

http://www.webmd.com/a-to-z-guides/thyroid-storm

A thyroid storm, for those who don't know, is bad news. As in about a 50% fatality rate if you make it to the hospital. It also shows up when you are under anesthesia. As I understand it, your endocrine system goes completely nuts led by your thyroid. Kind of like when a musician's sound system starts experiencing feedback that goes off the scale quickly.

As to does it apply to what I have been experiencing, my answer would have been "no" up until a month or so ago. But something happened as a result of the stress crisis I went trough. I started seeing unexplained spikes in blood pressure and experiencing hot flashes. I glimpsed a panic attack once. There were intervals where the heart didn't feel right. And it all seemed to be accelerating was the scary part. About two weeks ago I ran across the info about acetyl-l-carnitine (which I was already taking in lower doses) and its ability to stop hypothyroid effects including the storm. Upped my dose to four grams a day and was turned around within 24 hours. I have gotten steadily better ever since.

I gotta tell you, the power of the endocrine system doesn't get any plainer than when it starts to hint at what it could do. And it still comes down to stress.

One thing that I have been meaning to do is to compare thyroid storm to neuromalignant syndrome. Any overlap there?

http://www.ncbi.nlm.nih.gov/pubmed/12424963

see related citations in right column

here's a search:

http://www.google.com/search?q=thyro...e=utf8&oe=utf8

Rick and Paula,

Thanks for heading in this direction. I have had one dicey week with this stuff. On the bright side, each has given me a chance to try yet another pharmaceutical weapon.

- These episodes have a memory. Let me say that the anxiety induced over potentially having another episode, or the mere thought of it, can indeed trigger one. Happened to me in Ikea. Funny, in retrospect, but terrifying when happening. Let's just say that those Swedish engineered carts with wheels that turn 360 and do not lock are not PWP friendly. Obviously, this one is tied to social anxiety; the only way out is through 10 mg Propanalol.

-Missed a dental appt. mid week because of sudden off.

-Yesterday, I subsisted largely in a on-off limbo (my ideal of hell, BTW). My meds when I finally did get them working lasted like an hour. A late afternoon nap helped me recover a bit, but not before I hit reality that these episodes may land me in the ER. Wore off again suddenly after dinner and my day played out on a smaller scale and shorter interval. Also tried sipping gatorade and eating more frequent smaller meals; this seemed to help a bit.

Rick, have you noticed on days when these attacks plague you that you cycle through smaller mini-attacks when meds wear off? Also, did you notice meds hardly last when you do finally get them to kick in?

After reading Paula's links, it seems, my episodes are deep offs based on untreated hypothyroid that is interfering with metabolism of my PD meds. I don't feel it is Neuroleptic Malignant Syndrome but more I am not metabolizing my meds; there seems to be a blockade of sorts. I note that only thing keeping me in the game is boosting with 1-2 mg of Requip.

Laura

Laura-

When you are dealing with this would you say that your arms and legs were best decribed as weak or as rigid?

At its worst, what happens if you try to force yourself to walk?

How long does it last?

My answers are weak, everything locks up immediately, and two to three hours, so that's where I'm coming from.

As to the meds in the system,it is as though time had been suspended and they pick up where they left off.

What made you decide you were hypothyroid? Any testing?

I'm assuming that I am hyperthyroid with associated periodic paralysis based entirely on my experiences until I can talk my way into an endo's office

First of all, upping the amount I take has really turned my butt around big time. Two weeks ago I was a basket case and helpless about 8 hours of the day. Now that is less than one hour and dropping. Also, my meds are acting different. I am lowering doses and getting longer on times. Two days ago I went off (not an attack) and 15 minutes later came back on. It has been ages since that happened and it has happened twice more since.

Another change is that some of my triggers are fading. I ate a piece of pizza yesterday and nothing happened. A month ago it would have cost me an afternoon. And the changes seem to be continuing.

I had not been wanting to say much because I didn't know if it was just me or just hyper- but not hypo-. So I've been forced to sit around with a big grin on my face and keep quiet.

But it seems that carnitine levels are down in both cases.


1. Muscle Nerve. 2005 Sep;32(3):357-9.

Muscle carnitine in hypo- and hyperthyroidism.

Sinclair C, Gilchrist JM, Hennessey JV, Kandula M.

Department of Neurology, Rhode Island Hospital, Brown Medical School, Providence,
Rhode Island 02903, USA.

Weakness is common in both hyper- and hypothyroidism, and skeletal muscle
L-carnitine may play a role in this regard, as suggested by studies indicating
abnormal levels of carnitine in serum and urine of patients with thyroid
dysfunction. Skeletal muscle samples were obtained for carnitine analysis from
control subjects, and from hyperthyroid and hypothyroid patients before and after
treatment. There was a significant reduction in carnitine, especially the
esterified portion, in hyperthyroid individuals, with a return to normal as
euthyroid status was regained. In hypothyroid patients, there was a trend for
carnitine to be lower than normal and for improvement once euthyroid status was
attained. Our data indicate that muscle carnitine levels are affected by both
hypo- and hyperthyroidism. A decrease in muscle carnitine in both conditions may
contribute to thyroid myopathy.

PMID: 15803480 [PubMed - indexed for MEDLINE]


So, while it does help with hyperthyroid as the Italian researchers found, that doesn't mean that it can't help in hypo- as well.

But if you try this, do your own research. I'm going to post a series of reports to help, but this is new territory for me and you may find me on the trail with an arrow in me. But so far, so good.

BTW, I've gone from about one gram per day to six. And I'm limiting the alpha lipoic to 100 mg just to be cautious.

Abstracts to follow.