Aa
Need to vent.. Don't know what to believe anymore.
This might get kind of long but hang in there with me, I don't know where to go from here and i'm scared and confused and so frustrated...
I'm a 37 y/o female diagnosed with Hashimotos almost 3 years ago, No negative medical history other than occassional benign Premature Ventricular Complexes that began about 9 years ago with very infrequent attacks (these increased around the time of diagnosis and medication given)...
Was started on 25mcg of Levoxyl January 2007, bumped to 50mcg and then 75mcg (diagnosis and therapy was began with my GP) I started having hyperactive symptoms i.e. anxiety, stomach cramps, diarreah, quick reflexes, increased PVC's, hyperactivity feeling like my system was just reeling, my GP immediately stopped my medication for fear of "thyroid overdose" based on my symptoms and referred me to an Endocrinologist. The endocrinologist immediately began my Levoxyl again beginning with 25mcg and increasing to 75mcg over a period of time, During this time i would swing from over to under symptoms. When i was on 25mcg and felt like i was underactive he would increase my dosage to 50mcg and I would feel overactive symptoms again "just like i did with my GP when she stopped my meds" This has been going on like this the ENTIRE 3 years...
I got pregnant and had a baby, after i had my baby my body has been all out of whack.. I have had hyper/hypo symptoms, my endo thought i had postpartum thyroiditis TSH was .009 FreeT4 was 1.29 so he pulled me off of my 100mcg of Levoxyl completely. 3 weeks later i start feeling more like ****, i'm having underactive symptoms go back to the endo he says he would guess that i was STILL overactive based on my symptoms but drew labs this time my labs were TSH 102 FreeT4 .17 and told me to begin taking my Levoxyl again at 88mcg.. I didn't feel comfortable with that so i started 44mcg "88 cut in half" i felt ok on that for a few days so decided to go ahead and bump up to the 88mcg, after 2 doses of that i'm having the hyper symptoms of stomach cramps, diarreah etc.. just like I've always gotten from increased dosages of Levoxyl in the past. SO NOW i went to see my GP because i'm fed up with my endo at this point and she defends my Endo, refuses to reffer me to a different endo and tells me i'm having symptoms of hyperactive again because of the postpartum thyroiditis and that i need to be taking the 88mcg to bring my TSH levels down and raise my FreeT4, she also said that when my thyroid is out of whack then my symptoms compound and i experience symptoms of both over and under and it doesn't matter if my levels are .0001 or 1000 and that either way i'm going to have symptoms of both hyper and hypo....
MY theory is that i am still HYPO because my last labs being so far off and i've only been on Levoxyl for 5 days so it hasn't had enough time to bring me to normal levels let alone HYPER again, however, I feel that i am having "side effects" aka symptoms of HYPER because of the RAPID dosage increase of Levoxyl. My doc doesn't agree because she said not many people have side effects from levoxyl.. She said 1 - 5% do have..
Also, My doc wanted to put me on a Beta-blocker for my PVC's and freaked me out telling me i NEEDED the Beta-blocker to keep me from going into a cardiac arrest arrhythmia type issues from being "overactive" thyroid. but my TSH was 102 and my FreeT4 was .17 just a week ago.. I saw a cardiologist just last year and he didn't seem concerned with ANY cardiac activity as it pertained to my thyroid condition so why are the docs trying to push beta-blocker? it's freakin me out thinking there is something wrong with my heart now and that because they can't get my thyroid straight whatever that means then i'm at risk for heart failure etc?? will a beta blocker really make a difference? especially if i'm not really HYPER but only feel like i'm overmedicated?
She also mentioned switching me from Levoxyl to Senthroid, she said it's RARE but some people are sensitive to Levoxyl and do better on senthroid.. isn't it the same thing? I'm confused and scared and i don't know who to trust, i want to follow the docs orders but look at where the docs orders have gotten me now... ughhhh...
I'm freaking out about the Beta-blocker because the PVC's are something i've dealt with for YEARS, have seen a cardiologist for AND only have when my medication dosages are increased.. WHY THE HECK would I take a beta blocker that can have potential life threatening side effects in and of itself for a benign heart condition that is only exaccerbated by Levoxyl or my thyroid levels being off???
As a side note... My GP doc said i've read too much about my condition.. What the heck does that mean? i'm educated about it so that makes me difficult to treat? I've done what they've asked and i've followed their method of treatment and look at the condition i'm in now... Too much reading makes me armed with knowledge and question them instead of simply allowing them to shove down my throat their "cookie cutter" treatment.. Heaven forbid i be the exception to the rule.. If they know what the heck their talking about then why do i feel like A$$??? ughhhh..
I'm a 37 y/o female diagnosed with Hashimotos almost 3 years ago, No negative medical history other than occassional benign Premature Ventricular Complexes that began about 9 years ago with very infrequent attacks (these increased around the time of diagnosis and medication given)...
Was started on 25mcg of Levoxyl January 2007, bumped to 50mcg and then 75mcg (diagnosis and therapy was began with my GP) I started having hyperactive symptoms i.e. anxiety, stomach cramps, diarreah, quick reflexes, increased PVC's, hyperactivity feeling like my system was just reeling, my GP immediately stopped my medication for fear of "thyroid overdose" based on my symptoms and referred me to an Endocrinologist. The endocrinologist immediately began my Levoxyl again beginning with 25mcg and increasing to 75mcg over a period of time, During this time i would swing from over to under symptoms. When i was on 25mcg and felt like i was underactive he would increase my dosage to 50mcg and I would feel overactive symptoms again "just like i did with my GP when she stopped my meds" This has been going on like this the ENTIRE 3 years...
I got pregnant and had a baby, after i had my baby my body has been all out of whack.. I have had hyper/hypo symptoms, my endo thought i had postpartum thyroiditis TSH was .009 FreeT4 was 1.29 so he pulled me off of my 100mcg of Levoxyl completely. 3 weeks later i start feeling more like ****, i'm having underactive symptoms go back to the endo he says he would guess that i was STILL overactive based on my symptoms but drew labs this time my labs were TSH 102 FreeT4 .17 and told me to begin taking my Levoxyl again at 88mcg.. I didn't feel comfortable with that so i started 44mcg "88 cut in half" i felt ok on that for a few days so decided to go ahead and bump up to the 88mcg, after 2 doses of that i'm having the hyper symptoms of stomach cramps, diarreah etc.. just like I've always gotten from increased dosages of Levoxyl in the past. SO NOW i went to see my GP because i'm fed up with my endo at this point and she defends my Endo, refuses to reffer me to a different endo and tells me i'm having symptoms of hyperactive again because of the postpartum thyroiditis and that i need to be taking the 88mcg to bring my TSH levels down and raise my FreeT4, she also said that when my thyroid is out of whack then my symptoms compound and i experience symptoms of both over and under and it doesn't matter if my levels are .0001 or 1000 and that either way i'm going to have symptoms of both hyper and hypo....
MY theory is that i am still HYPO because my last labs being so far off and i've only been on Levoxyl for 5 days so it hasn't had enough time to bring me to normal levels let alone HYPER again, however, I feel that i am having "side effects" aka symptoms of HYPER because of the RAPID dosage increase of Levoxyl. My doc doesn't agree because she said not many people have side effects from levoxyl.. She said 1 - 5% do have..
Also, My doc wanted to put me on a Beta-blocker for my PVC's and freaked me out telling me i NEEDED the Beta-blocker to keep me from going into a cardiac arrest arrhythmia type issues from being "overactive" thyroid. but my TSH was 102 and my FreeT4 was .17 just a week ago.. I saw a cardiologist just last year and he didn't seem concerned with ANY cardiac activity as it pertained to my thyroid condition so why are the docs trying to push beta-blocker? it's freakin me out thinking there is something wrong with my heart now and that because they can't get my thyroid straight whatever that means then i'm at risk for heart failure etc?? will a beta blocker really make a difference? especially if i'm not really HYPER but only feel like i'm overmedicated?
She also mentioned switching me from Levoxyl to Senthroid, she said it's RARE but some people are sensitive to Levoxyl and do better on senthroid.. isn't it the same thing? I'm confused and scared and i don't know who to trust, i want to follow the docs orders but look at where the docs orders have gotten me now... ughhhh...
I'm freaking out about the Beta-blocker because the PVC's are something i've dealt with for YEARS, have seen a cardiologist for AND only have when my medication dosages are increased.. WHY THE HECK would I take a beta blocker that can have potential life threatening side effects in and of itself for a benign heart condition that is only exaccerbated by Levoxyl or my thyroid levels being off???
As a side note... My GP doc said i've read too much about my condition.. What the heck does that mean? i'm educated about it so that makes me difficult to treat? I've done what they've asked and i've followed their method of treatment and look at the condition i'm in now... Too much reading makes me armed with knowledge and question them instead of simply allowing them to shove down my throat their "cookie cutter" treatment.. Heaven forbid i be the exception to the rule.. If they know what the heck their talking about then why do i feel like A$$??? ughhhh..
Just a note about beta blockers, they did not work for me. My pcp gave them to me for the tachycardia and it caused heart attack symptoms. Sent me to the emergency room twice and the only relief I got was to pop nitro glycerin tabs. So my body did not like the beta blockers! At first I thought I had heart disease, the dr's were all looking at my heart. I kept telling them I have Hashi's but they wouldn't listen . . .so now they are looking at my thyroid. Had most of it removed due to a large nodule, I couldn't swallow, that was in '92. Now I have another nodule on what's left, the nodule is the same size as the thyroid. I started out on levo but was switched to sythroid . . .maybe you are sensitive to the levo.
I went to my PCP on Monday and asked him for a t3 test and he is doing a whole battery of tests. He's a great guy, just trying to treat my symptoms~~~~ now he is referring me to a specialist who I see on the 21st. In the meantime, if I have another terrible tachy event I will just try to deal with it. Have palpitations all the time, just learned to live with it. I have learned much from this list, I understand 'a little knowlege can be dangerous' but the more I know about Hashi's the better equipped I am to deal with it. Losing weight is my top priority right now and am working really hard on that. I got a great weight loss dvd from the Mayo clinic that is really helping me LOTS :-) Thanks to everyone for sharing, it's wonderful to know I am not crazy or alone.
I went to my PCP on Monday and asked him for a t3 test and he is doing a whole battery of tests. He's a great guy, just trying to treat my symptoms~~~~ now he is referring me to a specialist who I see on the 21st. In the meantime, if I have another terrible tachy event I will just try to deal with it. Have palpitations all the time, just learned to live with it. I have learned much from this list, I understand 'a little knowlege can be dangerous' but the more I know about Hashi's the better equipped I am to deal with it. Losing weight is my top priority right now and am working really hard on that. I got a great weight loss dvd from the Mayo clinic that is really helping me LOTS :-) Thanks to everyone for sharing, it's wonderful to know I am not crazy or alone.
I'll say a prayer for you! When I was at my wits end with all of this last January, I began to educate myself and decided to take charge of my daughters situation. I also began to pray daily that God would lead me in the right direction for my daughters thyroid issue and that He would not only reveal to me the direction to go, but that He would also open the doors so that she could ultimately have good health. The PVC's were really scary for me and truly were God's way of getting my attention! I truly am not the same gulable, doctor trusting mom that I use to be! (you can read my journal article on my home page if you'd like). They say that we are all only given as much in this life as we can handle! Thyroid issues, when not treated in the correct way for our "individual" bodies can really be a biggy and cause many problems in a hurry! I incourage you to keep at this until you reach good health again! Don't settle for less! The book "Overcoming Thyroid Disorders" by Dr. David Brownstein has been very helpful to me and came highly recommended by my compounding pharmacist. You can order it from Amazon.com.
Thanks for the kind words and hang in there, okay!
Thanks for the kind words and hang in there, okay!
I'm glad that they were able to find a solution to your daughters issues.. I couldn't imagine a child having to deal with this, I'm definitely happy that she is thriving with it though when some of us adults have so many issues trying to find our solution..
My doc and i have a theory that my PVC's are coorelated with gastric activity.. I have gastritis that irritates my vasal vagal which causes PVC's because they all seem to be related. We are testing the theory with treating the gastritis to see if it alleviates the PVC symptoms. I've had PVC's before thyroid disorder was ever diagnosed and I have them when my numbers are within range and I have noticed i have them when my stomach is gassy or right after i eat etc... so we will see how that goes and then take it from there.. I'll definitely keep the T3 information handy if it may prove helpful in my situation.. My best to you and your daughter for a continued successful treatment of her symptoms.. God bless..
My doc and i have a theory that my PVC's are coorelated with gastric activity.. I have gastritis that irritates my vasal vagal which causes PVC's because they all seem to be related. We are testing the theory with treating the gastritis to see if it alleviates the PVC symptoms. I've had PVC's before thyroid disorder was ever diagnosed and I have them when my numbers are within range and I have noticed i have them when my stomach is gassy or right after i eat etc... so we will see how that goes and then take it from there.. I'll definitely keep the T3 information handy if it may prove helpful in my situation.. My best to you and your daughter for a continued successful treatment of her symptoms.. God bless..
Wow! I'm exhausted just reading all this!!! Thought you'd like to know that my daughter suffered with PVC's and does not have them any longer! No Betta blocker or any other heart med. required. She is 9 and born without a thyroid gland. On t4 med only (Synthroid) all her life. Problem was that it did not convert well for her to the active t3 that her body was needing. However, her pediatric endo never caught this, because she NEVER checked her freet3! She just assumed it magically converted! Her t4 levels were fine, so adding more t4 med was not the answer. We choose to try to help get her t3 up by switching her to dessicated thyroid hormone. (Nature-Throid) It has plenty of t3 so her body does not have to struggle with inadequate conversion any longer! Proper organ function is dependent on the proper amount of the active thyroid hormone, T3, in your body. Your heart is the one organ that will try to compensate for imbalances in the body! Correct the balance, and the heart (PVC's ) will probably correct themself, as my daughters did! She is doing great! Of course, it took a change in her doctor to get this done, but it was so worth it! I hope this will help you in some way! You really should get a new doctor! Good luck and God Bless!
The problem is that i got to thinking, during my pregnancy i was swinging hyper and hypo and having symptoms but the symptoms were dismissed because my levels were "within range" so now that my levels aren't within range the SAME symptoms that i was getting before now all of a sudden are something to treat and be concerned about? that makes no sense to me at all.. And today the doc getting on my case about not taking the beta blocker for PVC's and tachycardia, i had those worse when i was pregnant than i do now and nobody said anything because i was "within range" so what they are telling me here is that regardless of my symptoms my labs are what calls the shots and if i'm having symptoms when my levels are within range than it's something other than thyroid related however, when i have the same exact symptoms when my levels aren't in range then it is thyroid related.... insanity, i tell ya.. pure insanity...
The problem with us Hashis, is that we're not diabetics. We can't just ***** our fingers and know our levels that moment. When doctors adjust our meds, they are looking at labs from the prior week and because we swing hypo to hyper in the first phase, we might be hyper for our test and back to hypo when the doc drops the meds, which is why I STRONGLY believe that the doctor should primarily treat the SYMPTOMS, followed by the frees, followed by TSH.
My endo tried to keep me on my low .50 mcg when I saw her yesterday. I explained to her that I was hyper last week, and she reluctantly, upped me to 75 mcg.
Despite my hyper phases, I continue on the Synthroid; although I haven't had the crazy heartbeats since before Synthroid last spring. If so, I'd probably take a half pill that morning.
I know now that when it's time for a blood test, if I'm having a hyper day, I will wait a few days for it to subside before I get my blood tested.
I was only suggesting surgery as an option if all others fail.
:) Tamra
My endo tried to keep me on my low .50 mcg when I saw her yesterday. I explained to her that I was hyper last week, and she reluctantly, upped me to 75 mcg.
Despite my hyper phases, I continue on the Synthroid; although I haven't had the crazy heartbeats since before Synthroid last spring. If so, I'd probably take a half pill that morning.
I know now that when it's time for a blood test, if I'm having a hyper day, I will wait a few days for it to subside before I get my blood tested.
I was only suggesting surgery as an option if all others fail.
:) Tamra
I'm sorry you are going thru pretty much the same thing.. It is all very frustrating and as bad as the symptoms are I think what's worse are the doctors. Maybe they think we need someone to blame, maybe they think we don't know what were talking about, maybe they think what we decide to read and make ourselves more knowledgable about is nonesense but hey, what we read are facts nonetheless and the bottom line is our quality of life and if i'm not feeling well it is their job to find out why and fix it not try and shove me a "square peg" into their "norm range" round whole treatment simply just because they went to school and things are just too complicated to understand, seems more so for some of them in my opinion... and at the very least, at least in my case my doctors could work on their bedside manner, i don't care if we disagree or not, it's no reason to shut down and not communicate with me.... I hope the surgery option proves successful for you.. I have had 2 ultrasounds 1 of them just last week and both came back fine.. I do have multiple nodules and my endo did the sono because my thyroid felt swollen but said it came back fine. My guess would be that my putuitary is harrassing my thyroid for more thyroid since my TSH is 102 and my thyroid is saying "I'm working as hard as i can" and getting irritated at the putuitary's demands :) I'm going to make a little cartoon skit all about that.. with little evil looking antibodies and everything haha...
I see you were dizzy - i collapsed in a shop feeling dizzy and constantly nauseas - felt like im walking on clouds and my feet is just not touching the floor - have more tests done - ultrasound for one - i want my thyroid out - Hashis makes you prone to more nodules in the future and i don't want to be a time bomb waiting for the next one to grow. Just like you i had enough i want my life back and feel "normal"
my antibodies are 3300 at the moment so things are getting worce by the day for me and i would rather be on life long meds without a thyroid - which im on in anycase now than sit with the constant inflamation, up and down ect.
my antibodies are 3300 at the moment so things are getting worce by the day for me and i would rather be on life long meds without a thyroid - which im on in anycase now than sit with the constant inflamation, up and down ect.
Hi reading about your experience just makes me angry all over again - funny enough ive got more or less the same history as you - was diagnosed with hasimoto's 3 years ago - had a baby 8 months ago - during my pregnancy i felt the best ive ever felt in a long time.
About 2 months ago started feeling horrible - went for bloods came back that i'm hyper - TSH 0.05 was irretable up down moods tired ext. Dr Gp decreased my dosage i started feeling worce - blood test again 2 weeks later and i was HYPO Tsh 30. Was also reading alot asking Dr questions and his answer was also that i am reading to much nonsence - that the endocrine system is a complecated system and i would not understand it WHAT - and im in a medical field - i really had to bite my toungue
At this stage i had a goiter for the first time in my life could not swollow can't lay on my back without feeling im being suffecated. I went to a different GP. He send me for a ultrasound - semi solid complex nodule was found, thyroid scan showed "cold" nodule had biopsy and now awaiting to see a surgeon next week thursday.
So go see someone else and have a ultrasound done you never know there might be a nodule to blame for all this - all the best with all the investigations
About 2 months ago started feeling horrible - went for bloods came back that i'm hyper - TSH 0.05 was irretable up down moods tired ext. Dr Gp decreased my dosage i started feeling worce - blood test again 2 weeks later and i was HYPO Tsh 30. Was also reading alot asking Dr questions and his answer was also that i am reading to much nonsence - that the endocrine system is a complecated system and i would not understand it WHAT - and im in a medical field - i really had to bite my toungue
At this stage i had a goiter for the first time in my life could not swollow can't lay on my back without feeling im being suffecated. I went to a different GP. He send me for a ultrasound - semi solid complex nodule was found, thyroid scan showed "cold" nodule had biopsy and now awaiting to see a surgeon next week thursday.
So go see someone else and have a ultrasound done you never know there might be a nodule to blame for all this - all the best with all the investigations
I haven't talked to my doc about my hb being in the 40's.. It was mostly that way after delivery when i got home for about the first 3 weeks, i thought it was my body adjusting to having the baby, but i have a bp/hb monitor here at home and i obsessively check my bp/hb, i have had on average meaning for most of the day everyday my hb is in the 60's - 70's despite ANY thyroid symptoms wether they are hypo or hyper, it can however spike up to 90's or fall to 40's but only briefly and short periods of time, this is NOT the norm and is not even every day, but only periodic spikes or drops... I don't feel this warrants the beta blocker.. IF my hb was for the most part was high during this time they feel i have hyper symptoms then i definitely would consider the beta blockers but because i fluctuate from hyper to hypo symptoms and for the most part my hb is normal and i monitor it obsessively i don't feel the need for added medication...
I see the doc again in the morning, she is going to let me know if i can go see my old endo and to let me know if she is changing me over to senthroid instead of levoxyl... I have had complete blood work done and i assume it included those but i'm not 100%, i thought they did check those because they were trying to figure out why i was dizzy and said it wasn't due to my thyroid... I've just been all messed up since delivery of my baby in July and i can't wait to get some type of relief even if it is temporary, i'll take what i can get at this point..
I see the doc again in the morning, she is going to let me know if i can go see my old endo and to let me know if she is changing me over to senthroid instead of levoxyl... I have had complete blood work done and i assume it included those but i'm not 100%, i thought they did check those because they were trying to figure out why i was dizzy and said it wasn't due to my thyroid... I've just been all messed up since delivery of my baby in July and i can't wait to get some type of relief even if it is temporary, i'll take what i can get at this point..
You make a very strong case against using the beta-blockers. I used them, but my heart rate was at 140 sitting down and I was in a thyroid storm.
Can you call your cardiologist and inquire on it? What was your doctors response when you told them your HR is in the 40's as it is when your hyper? Your weight gain is most surely from hypo and no medication.
I have to agree with most here when they recommend small increase/decrease in medications, but SMALL increments. Now going hyper/hypo within a week from each other I guess can happen, but very rarely. They told me it takes up to 6 weeks before the dosage actually starts working in your system. However, you may be sensitive to ANY size of dosage change, not everyone is the same.
When do you go back to the doctor? They are checking other levels right? B12, Vid D, calcium, potassium? If you are low in those you will also feel like horrible as well.
Can you call your cardiologist and inquire on it? What was your doctors response when you told them your HR is in the 40's as it is when your hyper? Your weight gain is most surely from hypo and no medication.
I have to agree with most here when they recommend small increase/decrease in medications, but SMALL increments. Now going hyper/hypo within a week from each other I guess can happen, but very rarely. They told me it takes up to 6 weeks before the dosage actually starts working in your system. However, you may be sensitive to ANY size of dosage change, not everyone is the same.
When do you go back to the doctor? They are checking other levels right? B12, Vid D, calcium, potassium? If you are low in those you will also feel like horrible as well.
I have very minimal, infrequent episodes of rapid heart rate.. I have PVC's that my cardiologist has determined to be benign but they are exacerrbated by either my thyroid levels or my levoxyl, i haven't been able to make the coorelation yet.. I am actually GAINING weight.. i gained 9lbs in 3 weeks when they yanked me off my meds.. Now that i'm back on my meds i don't know, but as far as rapid heart rate, very rarely even when i'm having hyper symptoms, just the PVC's and infrequent, short lived episodes of rapid heart rate.. The problem i have with beta blocker is this.. When i'm hypo symptomatic "which is what my "numbers are indicative of right now" i have a very LOW heartbeat "in the 40's" If i'm on a beta blocker because i'm having hyper symptoms periodically and swing both hyper and hypo then where will my heart rate be when it is in the 40's on a beta blocker? if it's so erratical and changes from one moment to the next wouldn't either of those situations put me at risk for cardiovascular issues?
One thing your doctor said was either way you will have symptoms, true. It seems until they control you levels you will go hyper/hypo, until eventually your body will end up in one certain direction weather it be hypo or hyper.
The beta blockers are to protect the heart, i had to be on them for graves/hyper until my thyroid issues were resolved. I had a TT about 15yrs ago and STILL deal with the dosage adjustments. I developed graves right after my son turned 1yr old, I am sure I had symptoms when he was six months old, but I thought it was due to being a new mom and the dr. at the time told me it was a form of depression....
Don't go without protecting your heart. Talk to the cardiologist about the beta blockers, get his prespective on it.
Sometimes it is not easy controlling the levels despite the doctors efforts. Ten years after my TT , I went hyper for no apparent reason. I dealt with the dosage change for 3yrs. I was on 200mcg (on that for 10yrs), 175mcg, 150, 125 , 100, back to 125mcg. Your body will do and does strange things that even your doctor will not understand. Your body changes over time thus the hormones change along with it, at least that is the reason I was given for going back to hyper. Now for the last 2 yrs i have been at around a TSH of .44 - .67, I am 39, so I am sure I will go erratic again once I start with the womanly issues...
But do protect your heart.....Do you have a rapid heart rate? losing weight?
The beta blockers are to protect the heart, i had to be on them for graves/hyper until my thyroid issues were resolved. I had a TT about 15yrs ago and STILL deal with the dosage adjustments. I developed graves right after my son turned 1yr old, I am sure I had symptoms when he was six months old, but I thought it was due to being a new mom and the dr. at the time told me it was a form of depression....
Don't go without protecting your heart. Talk to the cardiologist about the beta blockers, get his prespective on it.
Sometimes it is not easy controlling the levels despite the doctors efforts. Ten years after my TT , I went hyper for no apparent reason. I dealt with the dosage change for 3yrs. I was on 200mcg (on that for 10yrs), 175mcg, 150, 125 , 100, back to 125mcg. Your body will do and does strange things that even your doctor will not understand. Your body changes over time thus the hormones change along with it, at least that is the reason I was given for going back to hyper. Now for the last 2 yrs i have been at around a TSH of .44 - .67, I am 39, so I am sure I will go erratic again once I start with the womanly issues...
But do protect your heart.....Do you have a rapid heart rate? losing weight?
Yes, you are having symptoms when you are within range...most of us do, because those whole broad reference ranges do not apply to all of us. You do have to find your individual range. Excellent question...where are your labs when you feel good?...exactly what you have to find the answer to. You probably felt worse with the first set of labs because you were having hyper symptoms. I only had a brief period in hyper land, but give me hypo any day...at least I can just go to sleep! There are people on the forum that react badly to one brand or the other. So, that might be an additional factor impeding your progress. It's worth the switch to see.
Finding your own personal reference range is the hard part...we are so different...one hypo's heaven...
I highly doubt that your blood levels have gone to hyper in just a couple of days. By that I mean that they have not gone above reference range. When I was overmedicated (I didn't have any bloodwork done at the time), I'm sure my levels were still low reference range (I'm one of the rare individuals who is quite happy with FT3 and FT4 very low in range), but FOR ME, I was hyper. When you are started at too high a dose or increase too fast, you can feel hyper because the increased levels of hormone in your body (relative to what they were before the increase) are something your body is just not used to. This is why slow and steady is so important.
"I think i need to find new docs, switch to Senthroid and work to find my ideal range based on a combination of my symptoms, my TSH, FT3 FT4 labs, slow increases and a lot of patience..." In a nutshell...you got it! This condition will make you very virtuous!
Finding your own personal reference range is the hard part...we are so different...one hypo's heaven...
I highly doubt that your blood levels have gone to hyper in just a couple of days. By that I mean that they have not gone above reference range. When I was overmedicated (I didn't have any bloodwork done at the time), I'm sure my levels were still low reference range (I'm one of the rare individuals who is quite happy with FT3 and FT4 very low in range), but FOR ME, I was hyper. When you are started at too high a dose or increase too fast, you can feel hyper because the increased levels of hormone in your body (relative to what they were before the increase) are something your body is just not used to. This is why slow and steady is so important.
"I think i need to find new docs, switch to Senthroid and work to find my ideal range based on a combination of my symptoms, my TSH, FT3 FT4 labs, slow increases and a lot of patience..." In a nutshell...you got it! This condition will make you very virtuous!
I was on 112mcg dosage the entire time during my pregnancy.. so for 9 months. I was not however symptom free.. I spent my entire pregnancy with varying symptoms of over/under and sideways but i dealt with it because my endo told me every 6 weeks that he checked that my numbers were "within range" and obviously that my symptoms do not coorelate with my numbers.. My symtoms where erratic while my "numbers" stayed within range so of course my endo felt i was quacky and I felt he was for not being concerned about my symptoms, but i just dealt with the symptoms as long as i knew every 6 weeks that at the very least my numbers were "within range" regardless of the symptoms i was having..and i guess my endo felt the same way..
I have to agree with everyone. To much erratic dosage change.
What is the longest you have taken a certain dose? Do the doctors wait 4-6 weeks before making a change?
What is the longest you have taken a certain dose? Do the doctors wait 4-6 weeks before making a change?
Ok so... lets see..
The problems i'm encountering is that i'm having symptoms when i'm "within range" I have never found what my individual ideal range is.. My question would be, where are my levels when i feel good.... Where is my TSH, my FT4 and FT3 levels when i'm feeling good, but.. I have NEVER been tested when i feel good, the docs only test me when i feel bad, but on the other hand, as an example when my levels were TSH .009 FT3 3.44 FT4 1.29 I felt WORSE than with TSH 102 FT3 1.98 FT4 0.17.. Those were my labs from one appointment to the next within a 3 week time frame and from 100mcg Levoxyl to nothing.. So even further than this information, maybe the brand Levoxyl is making me feel bad in addition to not finding my ideal range?? hmmm... I wonder if i switch to senthroid "which was an idea of my GP today" and then find my "ideal" range (that's the hard part) then maybe i can get this under some control.. hmmmm...
why would my doc want to increase my levoxyl when she is concerned that the "symptoms" i'm having are hyper with a concern of cardiac problems just because i have high TSH and very low FT3 and FT4. It would stand to reason that she would want to slowly increase my levoxyl due to my symptoms if she was that worried about them but still increase nonetheless due to my blood levels being SO FAR outside of the norm range.. Is it possible that within the last week my actual blood levels have gone to hyper? or is it that my blood levels are still probably hypo but having cross symptoms of hyper? Because my GP today said she thinks i'm hyper because of my symptoms, i don't understand why she would say that if my TSH was so high just a week ago and I haven't even been on meds but just a few days.. Why would she even guess that i am hyper but still want me to take 88mcg of Levoxyl? I think she has NO CLUE what she is talking about but at the appointment she made me feel like i didn't know what i was talking about.. I think i need to find new docs, switch to Senthroid and work to find my ideal range based on a combination of my symptoms, my TSH, FT3 FT4 labs, slow increases and a lot of patience... with a good doc... I just hope i can get one.. I basically begged her today for a referrel to my old endo who i absolutely loved.. He listened to me, he took time to explain things, he treated my symptoms.. I know he would be a great asset to my care and i just hope my GP can see that.. I find out tomorrow if she does..
The problems i'm encountering is that i'm having symptoms when i'm "within range" I have never found what my individual ideal range is.. My question would be, where are my levels when i feel good.... Where is my TSH, my FT4 and FT3 levels when i'm feeling good, but.. I have NEVER been tested when i feel good, the docs only test me when i feel bad, but on the other hand, as an example when my levels were TSH .009 FT3 3.44 FT4 1.29 I felt WORSE than with TSH 102 FT3 1.98 FT4 0.17.. Those were my labs from one appointment to the next within a 3 week time frame and from 100mcg Levoxyl to nothing.. So even further than this information, maybe the brand Levoxyl is making me feel bad in addition to not finding my ideal range?? hmmm... I wonder if i switch to senthroid "which was an idea of my GP today" and then find my "ideal" range (that's the hard part) then maybe i can get this under some control.. hmmmm...
why would my doc want to increase my levoxyl when she is concerned that the "symptoms" i'm having are hyper with a concern of cardiac problems just because i have high TSH and very low FT3 and FT4. It would stand to reason that she would want to slowly increase my levoxyl due to my symptoms if she was that worried about them but still increase nonetheless due to my blood levels being SO FAR outside of the norm range.. Is it possible that within the last week my actual blood levels have gone to hyper? or is it that my blood levels are still probably hypo but having cross symptoms of hyper? Because my GP today said she thinks i'm hyper because of my symptoms, i don't understand why she would say that if my TSH was so high just a week ago and I haven't even been on meds but just a few days.. Why would she even guess that i am hyper but still want me to take 88mcg of Levoxyl? I think she has NO CLUE what she is talking about but at the appointment she made me feel like i didn't know what i was talking about.. I think i need to find new docs, switch to Senthroid and work to find my ideal range based on a combination of my symptoms, my TSH, FT3 FT4 labs, slow increases and a lot of patience... with a good doc... I just hope i can get one.. I basically begged her today for a referrel to my old endo who i absolutely loved.. He listened to me, he took time to explain things, he treated my symptoms.. I know he would be a great asset to my care and i just hope my GP can see that.. I find out tomorrow if she does..
I agree completely that you are being mistreated. And your dosage adjustments have been much too erratic.
There are symptoms of both over- and under-active thyroid. However, many symptoms "cross over" and can be symptoms of either, like fatigue, palpitations, etc., etc.
There are blood tests to indicate both ypor and hyper. However, many of these are misused by physicians who believe that once a patient is "in reference range" on the tests, their job is done. Different people feel comfortable high in the FT3 and FT4 ranges, others are perfectly happ in the low end. We all have to find where we feel best, and that is where we have neither hyper nor hypo symptoms. It's a fine line to walk and is an art form.
For the same reason, bloodwork and symptoms do not always correlate.
My personal opinion is that doctors have to treat symptoms. What good are "perfect" numbers if the patient is miserable? We all have to be treated as individuals, and the misuse of numbers doesn't allow that.
No, I have Hashi's, and mine is under control. There were many bumps along the way, mostly due to inept doctors, but I think I'm there now. I think you need new doctors.
I should have mentioned also that it might be worthwhile to switch brands (i.e. from Levoxyl to Synthroid). Yes, the hormone in each is the same, but different brands contain different fillers or binders. Sometimes it's those that cause side effects. We hear that quite a lot, actually.
There are symptoms of both over- and under-active thyroid. However, many symptoms "cross over" and can be symptoms of either, like fatigue, palpitations, etc., etc.
There are blood tests to indicate both ypor and hyper. However, many of these are misused by physicians who believe that once a patient is "in reference range" on the tests, their job is done. Different people feel comfortable high in the FT3 and FT4 ranges, others are perfectly happ in the low end. We all have to find where we feel best, and that is where we have neither hyper nor hypo symptoms. It's a fine line to walk and is an art form.
For the same reason, bloodwork and symptoms do not always correlate.
My personal opinion is that doctors have to treat symptoms. What good are "perfect" numbers if the patient is miserable? We all have to be treated as individuals, and the misuse of numbers doesn't allow that.
No, I have Hashi's, and mine is under control. There were many bumps along the way, mostly due to inept doctors, but I think I'm there now. I think you need new doctors.
I should have mentioned also that it might be worthwhile to switch brands (i.e. from Levoxyl to Synthroid). Yes, the hormone in each is the same, but different brands contain different fillers or binders. Sometimes it's those that cause side effects. We hear that quite a lot, actually.
I agree that i'm not in a situation to warrant removal of my thyroid, i do however believe that i am being mis-treated wether that be under or over treated in addition to this the irradical treatment methods they are using doesn't seem appropriate just in the logical sense.
I'm trying to break this all down so that i understand it better and I don't appreciate my doctors not taking the time to listen to my questions and concerns or even taking the time to explain to me how all this mess works so that i can try and understand it a little better. I definitely know that I don't know everything, far from it actually, and it seems every day i learn that i didn't know as much as i thought i did "if that makes any sense" so with that said... from what i understand NOW are these facts: tell me if i'm wrong or not clarified about it...
There are symptoms of over and under active thyroid in general
There are blood levels to indicate over and under active thyroid in general
The symptoms are not always indicative of the blood levels as the blood levels are not always indicative of the symptoms.
What that tells me is that docs cannot treat blood levels to control symptoms NOR can they treat symptoms to control blood levels.. so how the heck are they supposed to treat?
This information to me seems that hashimotos is almost IMPOSSIBLE to control... am i misinformed?
I'm trying to break this all down so that i understand it better and I don't appreciate my doctors not taking the time to listen to my questions and concerns or even taking the time to explain to me how all this mess works so that i can try and understand it a little better. I definitely know that I don't know everything, far from it actually, and it seems every day i learn that i didn't know as much as i thought i did "if that makes any sense" so with that said... from what i understand NOW are these facts: tell me if i'm wrong or not clarified about it...
There are symptoms of over and under active thyroid in general
There are blood levels to indicate over and under active thyroid in general
The symptoms are not always indicative of the blood levels as the blood levels are not always indicative of the symptoms.
What that tells me is that docs cannot treat blood levels to control symptoms NOR can they treat symptoms to control blood levels.. so how the heck are they supposed to treat?
This information to me seems that hashimotos is almost IMPOSSIBLE to control... am i misinformed?
One thing I'll throw into the discussion is that you should consider trying to get your doctor (whichever) to treat you based on symptoms, by testing for FT3 and FT4 (not total F3 and total T4) and adjusting your meds slowly and carefully to alleviate your hypo symptoms. Since you seem to react a lot to med increases, you may have to resort to very small changes with intervals of 6-8 weeks between.
When you are on thyroid meds it is not unusual for the TSH to be suppressed to the point that an inexperienced doctor jumps to the conclusion that you are now hyper, and wants to cut off your meds. TSH is inadequate as a diagnostic for thyroid and should not be used to determine dosage. TSH is a pituitary hormone that is affected by many variables, including the time of the day when blood is drawn for the test. Also, when you think of the logic of it, there is no way that the absence of a pituitary hormone (TSH) is going to directly affect your body. TSH is only a signal to the thyroid glands. The thyroid hormones that directly affect metabolism and many other body functions are free T3 and free T4.
In addition to your testing for FT4, you should insist on testing for FT3 as well. FT3 is four times as potent as FT4 and FT3 correlates best with hypo symptoms. What you should be looking to do is to slowly and carefull adjust your meds to get your FT3 and FT4 levels high enough for you to become Euthyroid, by which I mean neither hypo nor hyper symptoms.
When you are on thyroid meds it is not unusual for the TSH to be suppressed to the point that an inexperienced doctor jumps to the conclusion that you are now hyper, and wants to cut off your meds. TSH is inadequate as a diagnostic for thyroid and should not be used to determine dosage. TSH is a pituitary hormone that is affected by many variables, including the time of the day when blood is drawn for the test. Also, when you think of the logic of it, there is no way that the absence of a pituitary hormone (TSH) is going to directly affect your body. TSH is only a signal to the thyroid glands. The thyroid hormones that directly affect metabolism and many other body functions are free T3 and free T4.
In addition to your testing for FT4, you should insist on testing for FT3 as well. FT3 is four times as potent as FT4 and FT3 correlates best with hypo symptoms. What you should be looking to do is to slowly and carefull adjust your meds to get your FT3 and FT4 levels high enough for you to become Euthyroid, by which I mean neither hypo nor hyper symptoms.
I agree that your dosage changes have been very erratic. Meds adjustments need to be made in VERY small steps. You simply do not go from 100 mcg to nothing...it's a prescription for misery, as you well know.
Surgery is only recommended for Hashi's in "dire" circumstances, i.e.if the enlargement of the thyroid is such that it inhibits swallowing or breathing. Hashi's very rarely requires surgery.
No thyroid meds...T4 only, T3 only, T4/T3 combos, or "natural"...affect your antibody counts. Antibody count varies wildly, but all that is really important is if you are positive or negative for antibodies. Once you have antibodies, they're yours for life unless you have your thyroid removed for some other reason, or your thyroid is completely "killed" off by the Hashi's (in which case they go into remission, but you still have them).
I certainly don't think you're at the point where you should be thinking that your Hashi's can't be controlled. Your doctors have not been treating you properly, and you need to find one who understands thyroid, with all its intricacies. It sounds to me like neither of your doctors has a clue as to how to control hypothyroidism.
Beta blockers have been around of about 50 years, have an established track record, are not dangerous, have few side effects, and really help to control the tachycardia. When I started atenolol, I went from 15-20 episodes a day to zero immediately upon starting.
Surgery is only recommended for Hashi's in "dire" circumstances, i.e.if the enlargement of the thyroid is such that it inhibits swallowing or breathing. Hashi's very rarely requires surgery.
No thyroid meds...T4 only, T3 only, T4/T3 combos, or "natural"...affect your antibody counts. Antibody count varies wildly, but all that is really important is if you are positive or negative for antibodies. Once you have antibodies, they're yours for life unless you have your thyroid removed for some other reason, or your thyroid is completely "killed" off by the Hashi's (in which case they go into remission, but you still have them).
I certainly don't think you're at the point where you should be thinking that your Hashi's can't be controlled. Your doctors have not been treating you properly, and you need to find one who understands thyroid, with all its intricacies. It sounds to me like neither of your doctors has a clue as to how to control hypothyroidism.
Beta blockers have been around of about 50 years, have an established track record, are not dangerous, have few side effects, and really help to control the tachycardia. When I started atenolol, I went from 15-20 episodes a day to zero immediately upon starting.
Interesting post. I don't have hashi's and am hyperthyroid, so I'm not too sure what's going on with all your medication. But I do want to comment on "My GP doc said i've read too much about my condition.. What the heck does that mean? i'm educated about it so that makes me difficult to treat?"
I always think that it is a good idea to read info, be informed, ask questions, get online at medhelp and do research...this prepares you to Handle what your doctor is talking about so you don't feel lost. But at the end of the day, Googling something does not equal going to medical school. Doctors do not know everything. But neither do patients. The important thing is that you can find an endocrinologist who will actually listen to you when you explain your concerns about how you feel. And also to find a GP who will do the same. And it doesn't sound like you have either one of those. I truly hope you figure out what is going on and find a good doc!
Mellowscout...have a nice day.
I always think that it is a good idea to read info, be informed, ask questions, get online at medhelp and do research...this prepares you to Handle what your doctor is talking about so you don't feel lost. But at the end of the day, Googling something does not equal going to medical school. Doctors do not know everything. But neither do patients. The important thing is that you can find an endocrinologist who will actually listen to you when you explain your concerns about how you feel. And also to find a GP who will do the same. And it doesn't sound like you have either one of those. I truly hope you figure out what is going on and find a good doc!
Mellowscout...have a nice day.
Now i just need to figure out what the method of treatment is for people that swing hypo to hyper... push meds when i'm hypo and pull them when i'm hyper has been my docs advise and obviously that isn't working..
Thanks for the website and info... Yeah, i need a new GP and Endo and alternative treatment. Nobody every really took time to explain to me what was going on, they diagnosed me with hashimotos and threw me on Levoxyl and told me it would solve all my problems.. Nobody told me it would be this complicated or that i would feel bad all the time...
I don't know if it's my thyroid or my thyroid meds that i'm on or a combination of both but something has got to change/give.. I'm sick and i'm tired and i just want to feel good again... I just want to be able to function.. I don't even care about the heavy menstrual cycles anymore, i've gotten used to that being the "norm" I'm starting to feel that way about the PVC's and the fatigue and i just CAN'T accept this as a way of life.. I just can't.. and all i'm getting from the docs is "you're reading too much" take your levoxyl and shut up.. oh no.. stop taking your levoxyl and shut up, oh start taking it again and shut up... i'm so exhausted with this entire thing..
I don't know if it's my thyroid or my thyroid meds that i'm on or a combination of both but something has got to change/give.. I'm sick and i'm tired and i just want to feel good again... I just want to be able to function.. I don't even care about the heavy menstrual cycles anymore, i've gotten used to that being the "norm" I'm starting to feel that way about the PVC's and the fatigue and i just CAN'T accept this as a way of life.. I just can't.. and all i'm getting from the docs is "you're reading too much" take your levoxyl and shut up.. oh no.. stop taking your levoxyl and shut up, oh start taking it again and shut up... i'm so exhausted with this entire thing..
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