TO: ShannieK

[Jimlow]

Shannon,
I'm going off the post for a while but will be back! I'm simply taking a break for a while to let others reply more. I'm going to do this from time to time, just for this reason and not due to anything else. Everyone is GREAT on here!!
I did want to tell you this though because we are sharing our adrenal antibodies test results. I will be back on with those results, sometime after the 14th of August.
Until then, keep up the great support everone!!

[ar1281a]

Hi JimLow,
Don't take a break please! I'm a newbie here and have found very helpful "chatting" and "sharing" my experience with you and Shannon. If you feel you need to, it's fine and I, too, will be waiting for your test results.

I went to see my endo yesterday, she says that I'm improving, still low pressure (not as bad) and lower when standing. She prescribed something that should help me while my body continues to heal (i hope it will). In the meantime, I need to wait untill I'm off the prednisone for a while to do all the other tests. I really hope to start feeling a lot better, it's been rough.

Take care,
Andrea

[anniet]

Hi Jimlowe
Please don't leave.  I've benefited so much from your knowledge. Question: You mentioned recently that at the beginnings of your Hashimoto's your experienced a lot of Hyper symptoms.  As you know I was recently diagosed with Hashi's too and really have had nothing BUT these kinds of symptoms. They started off before I was diagnosed and seem to worsen after a week of synthroid. Even though I had the typical sensitivity to cold, I really was rarely ever tired.  In fact I had insomnia due to this constant buzzing in  my head.  This has now thrown me full force into chronic anxiety panic attacks and a major sleeping disorder.  I'm in pretty bad shape now seeing a psychiatrist and being prescribed all sorts of things that set off dizziness that has often accompanied my fibromyalgia not to mention not helping me sleep.  How long did all these Hyer symptoms last for you and did you ever hear about synthroid reactly adversly causing more agitation?

Annie

[ShannieK]

Hi Annie, I know you are responding to Jimlow, but I just wanted to add alittle.  What is your current TSH and what dose of meds do they have you  on.  I'm a Hashi's also, as you know, and suffer from Hypo and hyper symptoms.  Usually the symptoms are not bothersome, even though I notice the wide range in symptoms, but I notice hyper symptoms more, whan my dose is off. Especially, not being able to sleep at night and panic attackes, those always kick in for me, when my dose is too high, and it all subsides, once I'm put on a lower dose.  On Hashi's you always have the two types of symptoms I have noticed, in my experiences, but through all this trial and error, I have noticed, I get extremely tired and cold and run down when my dose is too low, and when my dose is too high, I get the heart palpitations, panic attacks, dizziness, and can't sleep, just a suggestion.  I've been told, i'm very sensitive to my symptoms, which doctors, like around here, cause I can always judge where I need to be depending on my symptoms.  You sound alot like me, you can sure tell when you are off, Share with us your levels and dose and let's see.  I"m on 100mcg of Synthroid, when i'm on 75mcg my hair falls out, I'm freezing and tired, and sluggish, and can't think straight, on 150mcg, i'm restless, can't sleep, hot, sweaty, panicky and chest pain with heart palpitations, See how just a small change in dose can effect someone so greatly?  Talk to you soon Shannon

[anniet]

Hi Shannie

In answer to you questions: My current lab results as of last week are TSH 2.3 Free T4 1.35 and antibodies just above 1000 and I've been on 50mcg of synthoid or actually the generic brand for 4 weeks now.  Keep in mind I started off with a TSH of 10.71 and antibodies of 2900 in June.  I asked my Endo if she thought my dose was too high and she said absolutely not, that I was on a very small dose and that I must stay on it. I was even thinking of reducing the dose myself but I guess I'm a little scared. Do you think stopping it for a couple days would prove anything to myself or would it do anything at all.  Doesn't this med have a long half life.  Could you let me know what your labs are and how long it took for your TSH to come down.  Also, do you know if when you are experiencing Hyper symptoms does your TSH fluctuate as well?  In other words, could my TSH be this low with me suffering this much with Hyper symptoms? It just seems to me that I might just be overmedicated since the majority of the dropping of my TSH happened before I was even on the med from the beginning of June to the beginning of July.  It went from 10.71 to 4.85 during that time.  And from the beginning of July to the beginning August WITH synthroid went from 4.85 to 2.3.  I sooo confused and suffering sooo badly.  What do you think?

[ShannieK]

HI there.  Now I will probably really start to sound confusing.  I agree with the dr that you are on a very small amount of Synthroid.  Keep in mind this is all very touchy stuff, and now after seeing your labs and how you are feeling and how much it has fluctuated.  I think your dose isn't high enough.  You can experience hyper symptoms even when you are extremely hypo, I have, and once my dose was bumped up I felt worlds better.  You are at a 2.3.  Some people are real sensitive, and everyone is different, but I can tell you that when I am around that level, I feel terrible.  I started out with a TSH of 3.9, and was in crisis, I literally thought I was going to die.  I was having anxiety attacks, heart palpitations, chest pain, hair loss, muscle and joint pain, memory loss, brain fog, Diarrea (diarrhea), rashes, cold and heat intolerance, tingling and so on.  I was a mess!!!!!  this was at a 3.9.  I feel my best when I am below a 1.0, and have read on this forum, that many other people feel the same way.  If the new TSH range is 0.3-3.0 you are on the high end, I would not stop the medication whatever you do, and in fact think you would benefit from a med increase.  You also have high antibodies, which could in fact make your symptoms appear worse.  I was a 3.9, and they put me on 50mcg of Synthroid to start.  I was on that for 6 weeks, and my TSH only changed to a 3.8, in that amount of time.  They then put me on 75mcg and in 6 weeks, it came down to a 3.0.  They them put me on 100mcg.  I have been on this for probably about 6 months and have a current TSH of .9.  This is the best I have felt through this whole ordeal.  You are thinking you need to go down on your dose, but I believe if your dose went up, you will feel much better.  I hope this helps.  It was the wrong thing to do, but I adjusted my meds alot by myself, cause I could never get a dr. to listen to me, this is how I found out on my own, how I felt on different doses.  I do not recommend this, maybe you could ask your dr. for a med increase.  Just remember they work for you.    you are in normal range, but you are high, you will feel better when that number goes down, I promise you.  Keep me posted.  Shannon

[anniet]

Shannie

Thanks for all your information.  I'm learning so much about the thyroid lately from all you guys. I guess my take on my situation was even though my synthroid dose is considered low by most, is it possible that it just might be high for me considering it's come down fairly low in just 4 weeks time.  Isn't it more typical for a TSH to decrease much slower over longer periods of time as in your case?  Or is it simply everyone is different. I would think that maybe I should continue on this dose that it might bring down my TSH even further (I say this because it still seems to be working, went from 2.8 to 2.3 in a weeks time just a week ago) But...if my TSH gets as low as yours do, I still get Hyper symptoms. Or are Hyper symptoms independant of TSH in Hashimoto's? I'm confused, when you go hyper, you should increase your synthroid?
Annie

[anniet]

Shannon

Also, something else that I'm curious about.  When you do adjust your medications according to your hypo or hyper symptoms, how long does that particular dose take to correct those symptoms? Oh, and also if you had high antibodies did they also decrease along with your TSH over those months or do antibodies continuosly stay high until the thyroid gland fails.

Annie

[ShannieK]

Hi, i'm going to remember all your questions that you asked,without being able to see them while i'm writing this.  They say thyroid patients, are forgetful!!Ha ha.  yes, it is very possible that you staying on the same dose will bring your TSH down to where you will be feeling better, that is possible indeed.  Sometimes though, you get close to where you need to be and just don't quite get there, that's sometimes when they will up your dose alittle to relieve some of your troublesome symptoms.  When you go hyper and have the hyper symptoms, this is just normal, and this is just Hashimoto's, I'm sorry to tell you that.  It is very common for people with this disease to just bounce all over the place.  My dr. described it to me in a real plain way,  she said that I am hypothryroid because I have an underproduction of the hormone needed to help my body to function properly.  With Hashimoto's I have my own anitbodies that are attacking my thyroid and making it panic, during it's panic, it than secretes excess hormone, causing me to have hyper symptoms.  You just get sort of use to it after awhile.  You will always have both for awhile, until your hashi's does it's job and kills off the thyroid, to where you will just be hypo.  Now hyper symptoms that linger and are bothersome and go for days and weeks, now this probably is due to medication and needs to be adjusted again.  You asked if you were having hyper symptoms would you increase your med, and the answer is no, if you are having hyper symptoms you would decrease your meds.  But like I think i've mentioed before, sometimes it's very hard to judge, when I wasn't on Synthroid yet, and hadn't received treatment, I was having alot of heart palpitations and anxiety and so on, and it all went away once I started treatment.  I'm not sure on your antibody question.  My endo when I saw her for the first time didn't check my antibodies, she said there is no need after an initial diagnoses has been reached.  She knows that I have Hashimoto's, and can tell what the anitbodis are doing by looking at my TSH and such, she said there is no need to check the antibodies.  She said they will not go away, they will just work until they do their job.  Hope this helped, and I hope I touched on all your questions.  Good luck  Shannon

[anniet]

Shannon

You are so kind to hang in there with me and answer all my questions...I really appreciate it.  It seems pretty clear to me now.  You certainly have a lot of knowledge and if you are anything like me, and it sounds that you are, you need this knowledge to bring you some peace through all of this.  Good luck now.

Annie