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Avatar universal

I feel hopeless

January 2007 I was diagnosed as hypothyroid due to hashimotos.

since that time i have rode the rollercoaster of ups and downs and back and forth and hypo and hyper and i was told by a doctor that i trusted completely that i would just take this pill "levoxyl" and my life would resume just as normal as always. "boy was i misled"

it's been 4 years of life i feel has been taken away from me, day after day i wake up thinking today i'm gonna feel good, today's gonna be a good thyroid day and sometimes that is true but overall my quality of life is completely rotten. I've been to 3 GP's, 1 ENT, 1 Cardiologist, 3 psychiatrists, the ER and urgent care more than i care to admit and 7 endocrinologist "yes that is SEVEN".... ALL of them have told me the same exact thing..... when my levels are out of range take the increased dosage of levoxyl and you'll feel better in 6 weeks and if you don't then it's not your thyroid so take this anti-deppresent and this anti-anxiety, and here are some beta blockers and take probiotics, and i even had one tell me "i don't know why you don't feel good" (i actually respected him more than someone telling me it's all in my head and not thyroid related" atleast he admitted he didn't know, and then another that actually YELLED at me and i walked out of the room in the middle of the examination.

It's frustrating for me to come here and ask questions because all i ever get is: What is your FT3? sorry i can't help if i don't know that.. if this was such an important aspect of thyroid treatment then how come it is not more known in mainstream medicine? I live in a bit of a smaller town but not so small that out of "how many doctors did i list above"? how would they not see this as crucial and not mention it? i've gotten YELLED at from doctors when i've just brought up the IDEA of this, for 4 years? I've always trusted my doctors and always trusted their recommendations for treatment and if A don't work then go to B so why is THIS so controversial when it is soooo very important to my quality of life?

I have completely exhausted my options for healthcare providers, my husband is in the military and we have their insurance because it doesn't cost us anything but i don't have the luxury of going to any other doctors, i have to go thru Military doctors and they refer me to endocrinologists but i have to go to the ones they recommend and ALL of the ones they have recommened are completely closed minded, so what am i to do? i just sit and suffer and shut my mouth because i can't get my FT3?

I've had my FT3 on occassion in the past, and it has been just as unpredictable as FT4 and TSH... I have had symptoms that DO NOT coorelate to ANY thyroid tests at any time over the past 4 years so what does that mean for me? inconsistent and unstable is my way of thyroid life "symptoms and labs"

Reference ranges are TSH (0.3 - 4.5) <--- i know 4.5 is more than the new standard but that's what i got to work with.. FT3 ( 2.0 - 3.5) and FT4 ( 0.7 - 1.4)

Date dosage TSH Free T3 Free T4
12/8/2008 100mcg 3.92 3 0.9
2/2/2009 112mcg 2.32 n/a 0.9
3/4/2009 112mcg 1.76 n/a 0.8
4/15/2009 112mcg 2.47 n/a 0.7
6/16.2009 112mcg 0.71 n/a 0.7
7/23/2009 112mcg 0.81 2.5 1
8/28/2009 100mcg 0.09 3.4 1.2
9/23/2009 none 102 1.9 0.1
12/1/2009 88mcg 25.3 2.6 0.9
2/1/2010 94mcg 38.8 n/a 1.3
3/23/2010 100mcg 26.6 n/a 1
5/14/2010 112mcg 7.43 n/a 1.3 Felt mildly HYPO
6/28/2010 112mcg 14.8 n/a 1.2 Felt SEVERLY HYPO

based on the 6/28/10 labs i was increased and I"m now on alternating dosage of 112 and 125 for an average of 118.5mcg.. I have been on this for 3 weeks, I FEEL TOXIC... Overmedicated.... and i still have the HYPO symptoms of hair loss and constipation and i've had Goitor "fullness" in throat... based on my last labs my TSH indicated HYPO, my FT4 was in upper range and i felt HYPO.. so my opinion is the new dosage has pushed my FT4 overactive so why do i still have hypo symptoms and feel toxic?

I have no nodules... and have high antibodies... I can't get my FT3... what am i supposed to do?   based on this information what is going on with me?  :(

Doc says i'm almost at my max for thyroid replacement which should be around 125mcg "basically stateing that my thyroid is pretty much dead"

My next appointment isn't until Sept 30th, i can't even get off the couch most days.. what can i do? and the goiter feeling is getting worse :(


11 Responses
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1097839 tn?1344579942
hey - I've just got back from hols and read this thread and wondered how you got on at the new docs?

I'm 1 week into a T3 meds trial and think I feel better but it's too early to really know, particularly because I've been away so out of my work routine and super relaxed (yes lucky me:) )  now I'm back at work and my period's started so I don't feel too great but that doesn't neccessarily mean anything I know.

I've never had my RT3 measured but finally got FT3 done last month and lo and behold it was low when my TSH and Ft4 had both been "normal" for months. Like you I spent a long time frustrated because I just couldn't get this info. Now I have the chance to find out for myself if the T3 meds are going to make a significant difference.

I hope things are looking up for you by now?

Helpful - 0
Avatar universal
I called my doc and left a message and explained what was going on, and explained my symptoms and that i have been on the new synthorid dosage for 4 weeks.. Waiting to hear back from her.. She really seems like she'll listen and be open minded, I'm about to take the T3 plunge tho and see how she takes that one :) That or i'm gonna ask for armour :) wish me luck...
Helpful - 0
Avatar universal
#1 - Yes.

#2 - Yes and no (you didn't expect this to be THAT easy, did you?).  If your thyroid is dead and/or gone, d/cing meds would have the same effect.  However, if you have any remaining thyroid function, then T4 is still going to be produced by the thyroid, and your body is going to convert it.  It's the conversion process that has gone awry, and by taking T3, your TSH will go way down, and your thyroid will not be stimulated to produce T4.  What you're trying to do is shut down the conversion process entirely until the RT3 clears out of the T3 receptors in the cells.  From what I've read, reversing RT3 dominance with T3-only meds can take six weeks plus, so it's best to take the T3 and not go hypo for that long.

Whether or not this is a "real" syndrome...I've seen lots of people with very high RT3 (low FT3 to RT3 ratios)...so, I guess numbers don't lie?
Helpful - 0
Avatar universal
here is an article that i read at thyroid-disorders-suite101.com
http://thyroid-disorders.suite101.com/article.cfm/is_wilsons_syndrome_real


Reverse-T3 Syndrome – Is It Real?

Doctors Doubt the Existence of Reverse-T3 Dominance



Does the body normally make rT3 hormone?
The body always generates a small percentage of rT3 when converting its own thyroid hormones (about 5%), but Dr Wilson has suggested that after periods of extreme or prolonged stress, the body switches its balance, and converts most of the T4 hormone to the inactive rT3 hormone (i.e. around 75%).

This is because the body produces huge amounts of cortisol to deal with prolonged stress, and this acts to prevent normal thyroid hormone conversion. The cortisol blocks the T4–T3 process, resulting a low metabolic rate. Dr Wilson describes the process as “a survival mechanism that has gotten stuck”.

Although rT3 is not presumed to have a metabolic effect itself, it blocks the body’s receptor sites for T3 (it still fits, just like “normal” T3, because it too has three iodine atoms) but it does not produce the metabolic uplift of T3. In fact, by preventing T3 from being able to work its normal energy-giving effects on the body, it produces a form of hypothyroidism.

Can’t the Doctors Diagnose Wilson’s Syndrome?
The problem is two-fold: people with this syndrome would suffer from all the problems associated with hypothyroidism (low energy levels, brain “fog”, hair loss, headaches, etc), but any blood tests would show T3 levels as normal. This is because T3 and rT3 both register on standard blood tests as “T3” – and their combined total would appear to be an acceptable level. Standard blood tests do not differentiate between T3 and rT3.

The other problem is that most doctors, including endocrinologists, do not accept the existence of this syndrome, and in most countries do not test rT3 levels.

However, where people have insisted upon an rT3 test, in some cases they have found to be producing more reverse-T3 than "standard" T3, and responded to treatment. This may be due to the scenario proposed by Dr Wilson, or to some other form of problem with the T4-T3 conversion.

How Would I Know if I have Wilson’s Syndrome?
If this syndrome does exist, people suffering from it would have difficulty in proving this to their doctor. One way to test yourself is to take your oral temperature at 10 random times throughout the day: if the average is less than 98.0F, you are hypometabolic (this means your metabolic rate has dropped below normal, though thyroid blood tests do not reveal a problem). However, there are many possible causes of hypometabolism, including Wilson’s Syndrome; others include fasting, Alheimer’s Disease and even meditation.

Is There a Cure for Wilson’s Syndrome?
If you have this syndrome, Dr Wilson recommends treatment through a programme of time-release T3 tablets (7.5–15mcg), which are taken every 12 hours until the body temperature reaches an average of 98.2 or until you develop symptoms of hyperthyroidism (such as rapid heart beat). Once you reach a normal temperature, you maintain the dose for 30 days, then taper the dose down slowly before tailing it off completely.

With little or no T4 left in the system, rT3 production eventually decreases, and the conversion of T4 can occur normally. The body is said to have been shaken from its "stuck" state, and can once again function normally.



My question is......

1. is the reverse T3 dominance mentioned in this post the same theory as Wilsons Syndrome?

2. If Dr. Wilson suggests with little or no T4 left the RT3 production eventually decreases and conversion of T4 can occur normally... So wouldn't just stopping your T4 meds for a bit have the same affect?

Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
I, like everyone else, greatly sympathize with your dilemma.  I do have to agree with everything goolarra said.  

Your FT4's are staying pretty much at the top of the range, while your FT3's (when available) stayed at the bottom.  I had a similar issue at one time; was not converting the FT4 to the usable FT3; my endo added cytomel, and I'm doing much better.  

Not too long ago, I went through healthcheckusa a while back, to get tested, as it was not time to be tested according to the lab order I have from my endo.  I got TSH, FT3 and FT4 for $85. I didn't have the RT3 test done.   Yes, it's too bad that we have to pay out of pocket for some of this stuff, but as goolarra says, it's well worth it.

The biggest problem I can see with the young endos, is that they are being trained by the old endos, who don't want to change the way they do things.  I was told once by my pcp, that FT3 is used for "research purposes only" --- well, yeah.......research on MY body to tell me what's wrong!!  
Helpful - 0
Avatar universal
annamae - Thank you for your support.. I have visited the website for the recommended thyroid tests, financially i'm just not in a position to pay at the moment, I am currently in need of a root canal YAY ME :) and i have to pay like 175.00 out of pocket for that, for me i have to take one priority at a time and a toothache at the moment superscedes the thyroid ha.. go figure :) must be a pretty bad cavity eh? haha... but I will definitely be getting the test myself, i think it just stinks that i have to pay full price out of pocket when my insurance SHOULD cover it based on my doctors recommendations.. I could go into an entire conversation about health care or lack thereof and even how the new healthcare reform relates to the healthcare that i currently have because if you actually research what the government is pushing on unsuspecting healthcare lackies is "government insurance" which is exactly what is offered to military members and their family aka.. people like me... "just to give you an idea of what my insurance is and popular beliefs, it is called "tricare" and we have a little nick-name for it and it is  "try and get care" LOL.. i guess at the very least through all of this i can try and maintain some kind of humor :)

Goolarra - haha -  at least you are prepared for the worst :) no need for all the protection however, i won't attack you... I think i'm more frustrated with my docs not acknowledging  the importance of FT3 more so than everyone here recommending it...

I agree with you about the toxic feeling being related to elevated FT4 and RT3 dominance.. I just wish i could find a doc to agree with our rational.. I just don't understand that if something is so overwhelmingly obvious, why it is so hard for mainstream medicine to accept it?

at first i thought maybe big pharma influence, but if you think about it, big pharma produces T3 Cytomel? correct? so they would make even more money from T3 treatment? I don't understand how something so cut and dry and easy for us non-MD degree people to comprehend yet my medical doctor who is YOUNGER than me is not more informed of hypothyroid patients who need more then a standard "catch all treatment" that has been PROVEN over and over again to be substandard and for them to at least TRY and research alternatives to T4 only treatment when it proves to be ineffective on SOME hypothyroid patients i.e. ME...

What good are lab results when i still feel like crud?  it's almost like they are brainwashed and unyielding..

Considering the young endocrinologists that i have encountered and their attitude towards someone objecting to their T4 only treatment, i honestly think that during med school they are taught that if a thyroid patient objects to their method of T4 only treatment then they are to respond with unrelenting objection.. is that learned in med school? seriously?  

Some food for thought: i compare my thyroid treatment to pain management..

For example: if i have a headache and i take ibuprofen and i get severe stomach upset and i go to the doc and i say.. "Doc, i had a headache and i took ibuprofen, after taking the ibuprofen my stomach hurt really bad.. what's the doc gonna say? it's all in your head? ibuprofen only causes stomach upset in SOME patients but it hasn't been so overwhelming that we can recommend an alternative? HECK NO.. they are gonna recommend TYLENOL.... because why? they want you to FEEL BETTER...

why is it so different in dealing with thyroid?

thanks for the support everyone... i'm gonna feel better some day and i'll be here to support others in my success and hope to be a positive experience and support for others..


Helpful - 0
Avatar universal
Well, you've already heard my 'litany' on giving up gluten and other food triggers.

You've heard others stress the importance of testing and treating FT3 and even RT3. I totally agree that you are missing important numbers here and perhaps a much needed T3 hormone.

Now here's my litany on adrenals. Adrenal issues almost always accompany thyroid issues. Please get the 24 hour saliva test. Not the blood cortisol or urine, which will not tell you at which times of the day your adrenals are high or low. There are numerous places you can get this test online if you Google. Also, the adrenal community on MH can help guide you in the right direction and list the various methods of testing/treating adrenals. That debate can get very controversial. Some use cortisol shots and some use natural supplements like heavy doses of B12 and C vitamins. You're not there yet because you don't know if this is adrenal related, but just remember to test, test, test those adrenals!

Take care...
:) Tamra
Helpful - 0
Avatar universal
Just wanted you to know that I'm sorry your going through all this misery.
Both my daughter's have Hash.'s. The youngest one was dx'ed when she was 16 at Bethesda. They gave her medication when they thought she had Graves. When that was changed to Hash.'s no medication was given.
She is now 25 and suffering from the up's and down's your experiencing.
Up until 2008 she was left untreated. In 2007 she had what we thought was a breakdown...she stayed nearly a week in the hospital. The doctor's told her she had
borderline personality disorder, & sent her home with an AD. It wasn't the correct dx...
it was actually her thyroid. :(
She saw her first endo in 2008. He placed her on synthroid, each month after told her
"all your number's are fine". The man did nothing. I found a "top thyroid doctor", late
2008. He was more into diet/exercise....but, he did place her on armor.
When her lab test's started going wild....he told her she needed to exercise, & watch her diet. :0 He had no other suggestions. So, now...we are seeing her GP until her new appt. with another endo the first of the month.

Do I expect anything different from the new endo....not at this point.
About every 3 years...she switches back and forth between hypo and hyper.
She has clothes in her closet that range from a size 5 to a size 18, and has wore them all. I'm just looking for the center balance...the one that member's here talk about.
I'm trying to understand....how to reach that balance.


My eldest daughter has a goiter....that is noticable when you look at her.
She also switches back and forth. She's in the work force that requires her to do many speeches in front of crowds. At one point the anxiety was so much...she couldn't even talk without crying. I'm not sure how she got up and went...everyday.
What do the doctor's tell her....you DON'T have a thyroid isssue. Really?
They don't go beyond looking at the TSH. If, it's within normal range...you're good to go.
Even the lab here...won't run certain tests...if, the TSH is within range.
You ask for the FT3 & 4....they look at you...like you have a 3rd eye.

It's so aggravating...to the point of tear's...& throwing a fit, right in the doctor's office.

We are also retired military...& go through the base.
Yes...they are ALL closed minded. But, quick to offer the AD's.

Cardiologist's & endo's are the know all... see all... do all.. when it come's to the military.
If, they say it...it's law. Make's me want to growl...just talking about it.
You have to been your own doctor anymore...you have to check everything out...look, read, search...it's fustrating and drag's you down. What's worse....it make's you feel...
like you don't count...not good enough.

I'm sorry your suffering so.
Hope you get an answer to your question...that will point you in the right direction.
Wishing you the best.

Helpful - 0
Avatar universal
Okay, so...oops, quick check...flak jacket (check), helmet (check), ready to dodge bullets (check)

If I were you, I'd do the following:  go online and find a lab (healthcheckusa, perhaps) where you can order your own tests and get your own results.  They will send you to a local lab for the blood draw and send you the results directly (no doctor involved).  Get FT3 (duck!) tested and get RT3 (reverse T3) tested also.  You have to have them both done at the same time, since it's the RATIO of FT3 to RT3 that's important, not raw numbers.

I think you feel toxic because FT4 is too high (for YOU personally) and FT3 (duck!...okay, hope I wasn't too corny to make you laugh) is too low and/or you have RT3 dominance.

Check out this article on RT3 dominance:

http://www.custommedicine.com.au/blog/2007/04/17/reverse-t3-dominance/

I have heard several people use the "toxic" or "poison" description, and it almost invariably involves RT3 dominance.  The more T4 meds you take, the worse the RT3 dominance becomes, so you swing back and forth from hypo to hyper in a very narrow range.

Okay, so now you have your results in hand (at least YOU know what's up...we'll help you interpret), and you can either bring those results to your current doctor to see if he can blatantly ignore what's staring him in the face or find a doctor who will treat you properly.  You'll know what questions to ask before making an appointment if you have labs and know what it is you need.

It'll cost you a few bucks, but I can guarantee you that it will be THOUSANDS cheaper than K's protocol.

I'm convinced you need to add some T3 meds (since your FT4 is at a good, or even a bit high, level).  Unfortunately, I can't recommend doing that until you know your FT3 baseline levels (sorry, can't resist the urge to duck...oops, hurt my neck).

If I were you, I'd take this bull by the horns, figure out what's going on with you with adequate testing, then go about finding a doctor who will give you what you need.

I think I'm hit...  
Helpful - 0
Avatar universal
sorry you feel so bad. please don t scream but did you know that you can order a ft3 online and its not that expensive.  a while back i was so frustrated that i was ready to order my own labs and then order my own meds online and forget the doctor.  but- i am better now.  yes i think there is a good chance that you could benefit from t3 meds for your symptoms- but we need an ft3 draw---  i can hear you yelling at me oh no!!   if you type in google mary shomon order my own labs it will come up and for about 130 you can get the ft3 ft4 tsh- now im not telling you to order your own meds and treat yourself but many do and i was ready to do just that. will be interested to see what other responses you receive on your post. my heart goes out to you i know how you feel i have been there so many times and you are not alone.  keep reading and educate yourself knowledge is power- and , i think, the only way to feel better.  God bless you
Helpful - 0
Avatar universal
sorry my labs were all jumbled


Date:12/8/2008
Dosage:100mcg
TSH 3.92
FT3 3
FT4 0.9

Date: 2/2/2009
Dosage: 112mcg
TSH 2.32
FT3 n/a
FT4 0.9

Date: 3/4/2009
Dosage: 112mcg
TSH 1.76
FT3 n/a
FT4 0.8

Date: 4/15/2009
Dosage 112mcg
TSH 2.47
FT3 n/a
FT4 0.7

Date: 6/16.2009
Dosage 112mcg
TSH 0.71
FT3n/a
FT4 0.7

Date 7/23/2009
Dosage 112mcg
TSH 0.81
FT3 2.5
FT4 1

Date 8/28/2009
Dosage 100mcg
TSH 0.09
FT3 3.4
FT4 1.2

Date 9/23/2009
Dosage none
TSH 102
FT3 1.9
FT4 0.1

Date: 12/1/2009
Dosage 88mcg
TSH 25.3
FT3 2.6
FT4 0.9

Date 2/1/2010
Dosage 94mcg
TSH 38.8
FT3 n/a
FT4 1.3

Date 3/23/2010
Dosage 100mcg
TSH 26.6
FT3 n/a
FT4 1

Date 5/14/2010
Dosage 112mcg
TSH 7.43
FT3 n/a
FT4 1.3 Felt mildly HYPO

Date 6/28/2010
Dosage 112mcg
TSH 14.8
FT3 n/a
FT4 1.2 Felt SEVERLY HYPO
Helpful - 0
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