Shaking Even When The Weather Is Warmer?

[Rene S.]

I wish I could explain this better. I seem to always feel cold or rather get a shaking shivering feeling all the time. Especially if I go from one room to another or going from upstairs to downstairs where it is a bit cooler and I get this awful bone chill.. I wish I could better describe it. It's about 75 degrees outside and yet I'm in a long sleeve shirt. This has been going on since I was diagnosed with dsyautonomia/POTS. And wow was it awful in the winter! There are times that my whole body just shakes and temors and my teeth chatter. And my legs seem so wobbly. I find the only way to fix it is to get under the covers while my daughter is looking at me like I have two heads.

People keep telling me it's due to the weight loss. My normal weight is 104 and currently I'm about 89lbs. Food has lost all appeal but I do force myself to eat but not enjoying it?? I can't believe that all this has occurred in a span of 8 months.

I also notice that when my b/p is higher, I shake more. And it seems the more I shake, the higher my pressure becomes. I know it makes no sense. I'm not currently on a bb so I can't blame it on that. The only time that I'm warm and comfortable is night. Many times I wake up sweating and I'll take my b/p like last night and it was 90/43. I know our b/ps are supposed to be lower at night but I do have high fluctuations during the day. I can go to 153/90 and then once evening hits, it usually subsides. Although the other night it was quite high.

I'm just frustrated and tired of running to drs and not getting the full understanding. I'm awaiting the results of a full thyroid profile, cortisol, etc. My TSH was fine the last time.

Another weird thing - my hemoglobin is about 10-11 (which I think is normal) but my ferritin level is only 8. Not sure if I'm supposed to supplment with Feosol since I'm post meno and don't know why my ferritin would be low. Grrrrr.

Sorry I know I'm ranting. If anyone could shed some insight I would be grateful.

Rene

[mcaimless]

Ruekat, what exactly did you get ordered for the "full thyroid profile"? Some of the tests are very outdated even though they are still being used and if you have Hashimoto's then the TSH is useless.

Make sure that they've ordered a Free T3 (FT3), Free T4 (FT4)and the thyroid antibody tests: TPOAb and TGAb. And when you get your results back, please don't necessarily accept the Dr's opinion that your results are "normal". You Free T3 need to be at the very top of range, not just "in range" and your T4 needs to be at 50-80% or range. TSH is not an accurate way to measure thyroid function since it is a hormone put out by the pituitary, not the thyroid. The FT3 and FT4 are the thyroid hormones that are circulating in your blood and are what you need to monitor instead.

Your symptoms can be signs of Hashimoto's which include both hyop and hyper thyroid signs like weight loss and cold intolerance. Have you taken your temperature? Low temps are also a sign of thyroid disease.

I would strongly suggest you get your adrenals checked as well with a saliva test. You can order one online for around $140. A lot of your symptoms sound like adrenal fatigue too, which can go hand in hand with thyroid disease.

Here is a place to look for more info and additional recommended tests:

http://www.stopthethyroidmadness.com/recommended-labwork/

Good luck!

[pearsjon]

you have described me to a tee. even in the weight dept. it has been between 95 and 103F here and anytime i go into a building that has a/c i have to wear a jacket. i bring one w/ me everywhere. and the looks i get sitting outside the hospital on a bench w/ a jacket on in 103 degree weather. i also night sweat.

i do not have an answer (as usual), but wanted you to know i am w/ you in your pain and suffering.

take care of yourself and who cares what others think.

[ajw4790]

Hi,

I have had bouts of this in the past, mainly brought on by meds. But, I have an idea of what you are talking about. At first glance or whatever, inability or problems with thermoregulation sounds like classic thyroid symptoms. I would make sure to get EVERYTHING checked. But, also you mentioned your ferritin level...

Did you see my recent post on finding out that my ferritin level is 3?! So, getting that test result back made me research the topic a bit... In it I remember seeing that with low iron you can have difficulty with temperature regulation, along with many other issues. I would talk with your dr. about that test result and a plan to treat it. Also, possibly try eating foods high in iron and see if you notice any differences in how you feel?

Why did you mention not taking iron supplement if postmenopausal? If iron stores are low, I would think no matter what, if you are able you should try to increase iron. What does your dr say about the ferritin level? Did they write a script for an iron supplement?

What are your current meds?

What do your drs say about weight loss and lack of eating?

[Rene S.]

Ruekat, what exactly did you get ordered for the "full thyroid profile"? Some of the tests are very outdated even though they are still being used and if you have Hashimoto's then the TSH is useless.

Make sure that they've ordered a Free T3 (FT3), Free T4 (FT4)and the thyroid antibody tests: TPOAb and TGAb. And when you get your results back, please don't necessarily accept the Dr's opinion that your results are "normal". You Free T3 need to be at the very top of range, not just "in range" and your T4 needs to be at 50-80% or range. TSH is not an accurate way to measure thyroid function since it is a hormone put out by the pituitary, not the thyroid. The FT3 and FT4 are the thyroid hormones that are circulating in your blood and are what you need to monitor instead.

Your symptoms can be signs of Hashimoto's which include both hyop and hyper thyroid signs like weight loss and cold intolerance. Have you taken your temperature? Low temps are also a sign of thyroid disease.

I would strongly suggest you get your adrenals checked as well with a saliva test. You can order one online for around $140. A lot of your symptoms sound like adrenal fatigue too, which can go hand in hand with thyroid disease.

Here is a place to look for more info and additional recommended tests:

http://www.stopthethyroidmadness.com/recommended-labwork/

Good luck!

Hi. Thanks for the advice. Presently I'm awaiting test results on the following:

Standard TSH, Free Thyroxine, Heme Profile & Elect Diff, Comprehensive Metabolic Profile. This was infuriating to me as I went to one of the top hospitals and saw an endo whom I thought should have ordered more specific tests but his answers were if these are not normal then we'll pursue further. Grrr. These drs are infuriating, to say the least. I will mentioned the other tests when he deems to call me back with the results.

Yes, my body temp is low usually 96.5. I did look up Hashimoto's and it didn't sound like my symptoms. I appreciate you giving me another avenue to pursue.

I'm sure my adrenals are totally out of whack. Another thing the endo screwed up on.

Do you know whether or not insurance will cover the testing? I'd much rather start doing things myself. The endo's answer as to why I'm so cold was "you're too thin" (mind you he was at least 400lbs, not being mean, but honest). Well, hello figure out why I'm having trouble eating (getting full really quickly) and maybe things can be settled.

[Rene S.]

you have described me to a tee. even in the weight dept. it has been between 95 and 103F here and anytime i go into a building that has a/c i have to wear a jacket. i bring one w/ me everywhere. and the looks i get sitting outside the hospital on a bench w/ a jacket on in 103 degree weather. i also night sweat.

i do not have an answer (as usual), but wanted you to know i am w/ you in your pain and suffering.

take care of yourself and who cares what others think.

Sorry firewoman that you are going through this as well. My daughter just came home and wanted to know why the a/c isn't on. Why? Because I'm freezing! I know what you mean about people looking at you. I went down to get the mail and had on a long sleeve shirt while everyone else is in shorts and t shirts. Not this summer for me.

[Rene S.]

Hi,

I have had bouts of this in the past, mainly brought on by meds. But, I have an idea of what you are talking about. At first glance or whatever, inability or problems with thermoregulation sounds like classic thyroid symptoms. I would make sure to get EVERYTHING checked. But, also you mentioned your ferritin level...

Did you see my recent post on finding out that my ferritin level is 3?! So, getting that test result back made me research the topic a bit... In it I remember seeing that with low iron you can have difficulty with temperature regulation, along with many other issues. I would talk with your dr. about that test result and a plan to treat it. Also, possibly try eating foods high in iron and see if you notice any differences in how you feel?

Why did you mention not taking iron supplement if postmenopausal? If iron stores are low, I would think no matter what, if you are able you should try to increase iron. What does your dr say about the ferritin level? Did they write a script for an iron supplement?

What are your current meds?

What do your drs say about weight loss and lack of eating?

Wow, your ferrin was 3? did you get transfused? But what about your hemoglobin? is it in normal range? That's what I don't understand Mine's normal but my iron reserves are low. They usually don't want post menopausal women on iron because since we don't bleed there must be a medical reason for the low ferritin and also I think they say that in PM women and in men that adding iron thickens the blood and can in the long run perhaps in some people cause heart problems. I could be wrong but I read it some where. It was the POTS dr who drew the ferritin level and said follow up with your GI dr (he's on vacation) or primary and I forgot to ask her about it when I saw her last night. I had so many other things to ask.

Meds? Currently just klonopin I weaned off the beta blockers to see if it would make me feel any better since I wasn't feeling great on them. And truth be told, I don't feel great now. I'm seeing a new cardio on Thurs so keep your fingers crossed that this one won't be a moron!

The weight loss? No one but one dr has mentioned anything and that was consult with a nutritionist. well I know what to eat, I'm just having a hard time with it without feeling sick.

[ajw4790]

Hi,

I think my hemoglobin etc. are within normal range, but have not seen with my own eyes any of the most recent labs. They did not infuse me, or even bring it up yet. We shall see. I hope that you get in to see some of those drs ya mentioned and that they are helpful.

I wasn't sure on the iron supplement post-menopause... what you said makes some sense though. I would think though if a man got that low of a ferritin level they would supplement? Who knows? I would say make sure to followup with them on that.

[mcaimless]

I'm not sure if insurance will cover any saliva tests. If you go to a dr who will give you one (as opposed to ordering one online) then it may be covered as a lab test but that's iffy.

Too bad they didn't do your Free T3 and your antibodies tests. Being cold and low body temp is classic hypothyroid stuff. But when you get your Free Thyroxine (T4) back take a look at the number and see where you fall in the range. If you're below 50% then you need to insist on getting the correct tests or find a doctor who will order them (the realthyroidhelp forum has a Dr list and you can post your labs there for the "experts" to give you feedback on).

Again I'd really do the saliva test if I were you. If you are in adrenal fatigue you are going to feel pretty bad until you get it fixed.

[potsgirl]

Hi Rene,

I was just complaining about this very problem on Monday. If I dare venture to a movie, the grocery store, or anywhere that runs their air conditioning rather high, I freeze. So...While the temp is 102 outside, I have to dress in jeans, a long sleeved shirt, socks and tennies and bring a hoodie sweater along or I can't bear the cold inside, while I'm overly hot outside. I also get the shakes/tremors from both the cold and just being inside with the temp at 77, and am constantly sitting with my hands tucked between my legs or wrapped in my sweater. Sometimes my legs are so shaky coming down the stairs that I sit on my behind to come down.

I'm so sorry that you're suffering from these problems, too. I wish I had an answer, but I just put on more clothes...Be well, and take care my friend.

Jana