# ok what do i do now?



## jhh2828 (Mar 20, 2010)

i have been sick for years.lets see where it begins im not sure i could say its been at a bare minimum 10 years but thinking back perhaps alot longer.i recently went to a free clinic and the nurse and doctor thought things were wrong with me and i mentioned my thyroid etc so the doctor ran numerous tests(for all kinds of anemias)(diabetes)etc.the thyroid tests done were tsh and t3 and t4 one of the ts was free and one was total and the only thing that showed up was tsh was 6.88 and so they called me up to come in and i seen another doctor who told me he wasnt gonna medicate me and thought i had hyper or hyperish symptoms as well as hypo and told me he was gonna send me a referral for an endocrinologist and that whatever is wrong with me is out of his area of expertise.

Btw i went to the er in 04 and my tsh was high then as well but t3 and t4 were fine and that doctor couldnt medicate me and was a prick and thought i was crazy or something or had took lithium which i never have and even if i had u still treat it and then said maybe that was normal for me..i think not.

this is the full list of things that have really went downhill past 10 years:
cold hands(people actually mentioned this in 99)
feeling dizzy
feeling as tho something is floating in my head
ive always been thinish like 120 range and under and currently weigh 108 and am 5'6and a half and male and almost at anorexia weight levels even tho i eat 2000 cals a day.
really dry skin
always tiredish for most part but have good periods and bad periods like can feel okish for say wks then feel dodgy for months etc.
constipation (for some reason it appears to be easier when i ingest large amounts of soda)
severe motion sickness(and feel even more tired after a ride)-actually have had motion sickness problems since childhood
in high school i would often yawn all thru the 1st two periods and then some days when i came home would feel like throwing head on the table cos of exhaustion.
have had choking feeling.
frequent colds and stuff.
eye problems
sometimes sleeping alot.sometimes dont even hear phone ring when sleeping.
extremely hard to wake up.
when i went to school id often lay back down upon arriving downstairs then would often sleep in the car on the way to school.
side of neck sometimes soreish
blood pressure sometimes slightly high esp the lower number
sometimes heart beats really fast
low libido the last 10 yrs
sexually can obtain and maintain erection but the sensation is off and if standing and self stimulating feel as if am gonna pass out and other odd stuff.
sometimes a leg goes numb or arm or pins and needles feeling.
weird shock like sensation sometimes under the skin.
hair thinning
have had weird attacks(sometimes sense em coming on hrs in advance)where heart beats extremely fast and profuse sweating and shaking.
heartburn

i am gonna ask that they run the full thyroid panel if possible and run a pituitary panel as well as an adrenal panel and then maybe an autoimmune disease panel,anything else i should have checked out?

i really want to try and pull my life together now at 29 i dont wanna waste another decade in sickness and misery if there is anything that can be done to fix things.

10 years ago i had like a bad cold or something and everything seems to have really gotten worse since then...i had bad stomach pains for a few months then and do every once in awhile now as well as sharp side pains they did a liver and kidney panel 2 wks ago and everything was perfect-10 yr ago it was wacky with bun off creatine off bilirubin high and protein and blood in urine so im glad thats all fine now and no damage.

if a dog jumps on me i feel like im gonna be knocked out or something and feel so ill.also sometimes if holding a baby i feel like im gonna drop it or something.

do you think im hypothyroid,hyperthyroid,i could have a tsh tumor,or adrenal problem,or something entirely different?

i seen online on one site anyone with tsh over 6 should be treated.do you think if its treated id feel alot better?do you think something else other than the thyroid could be causing it like the hypothalamus or adrenals or other?

why do you think t3 and t4 are still in range after all these years?i dont have the exact scores for those with me but can get them on tuesday.


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## Andros (Aug 26, 2009)

Hello and welcome to the Board.

Wow!! You are not feeling well; that is for sure. And yes; I so suspect thyroid disease. That is not to say that something else is not going on but one thing at a time here. Most all the symptoms you listed can be attributable to thyroid disease.

Do you have a goiter? Do you have trouble swallowing or feel pain around the front of your neck or in your throat and ears?

Here are tests that I recommend.......

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies),TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

and here is like a 101 on thyroid lab tests to help you understand.......
Understanding thyroid lab tests......http://www.amarillomed.com/howto/#Thyroid

Please also have them run a lab for testosterone.

Let us know how all this goes. And get hard copies of your lab tests w/ results. When you post lab results, we need the ranges also.

AACE recommends TSH to be 0.3-3.0; most of us feel best at 1 or less. With the FT4 and FT3 in range, of course.


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## jhh2828 (Mar 20, 2010)

sometimes i get sharp throat pains that come on and leave and well as a child i used to swear everynight i was choking to death at bedtime nowadays i sometimes have choking feeling and esp with pills(not that i take any on regular basis)and i chew really well before swallowing and dont eat meat.no i dont have a goiter.they didnt give me a copy of the range numbers i remembered the tsh one and the referral is supposed to have that stuff on it but im gonna ask the other doctor if i can have a copy of all the results.oh yes i am planning on asking them to run testosterone as well.i am gonna write everything i want tested down on paper and take it with me.sometimes ears feel fullness and then eventually pop and then its all good.no ear pain.if water goes up my nose tho it hurts bad.


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## Andros (Aug 26, 2009)

jhh2828 said:


> sometimes i get sharp throat pains that come on and leave and well as a child i used to swear everynight i was choking to death at bedtime nowadays i sometimes have choking feeling and esp with pills(not that i take any on regular basis)and i chew really well before swallowing and dont eat meat.no i dont have a goiter.they didnt give me a copy of the range numbers i remembered the tsh one and the referral is supposed to have that stuff on it but im gonna ask the other doctor if i can have a copy of all the results.oh yes i am planning on asking them to run testosterone as well.i am gonna write everything i want tested down on paper and take it with me.sometimes ears feel fullness and then eventually pop and then its all good.no ear pain.if water goes up my nose tho it hurts bad.


Clearly there is something going on w/ the thyroid. Interestingly, the thyroid (goiter) will take that path of least resistance and sometimes grow inward rather than outward.

When do you see the doctor? I personally think that you would benefit from a radioactive uptake scan to "really" see what is going on. With the ear and nose involvement, that makes me even more suspicious that the gland is growing inward.

This is often referred to as ectopic thyroid. Here is some info..........
http://www.thyroidmanager.org/Chapter21/ch01s20.html


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## jhh2828 (Mar 20, 2010)

i have next doctor appointment tomorrow.


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## hillaryedrn (Dec 14, 2009)

My goodness! I'm so sorry you're having such a hard time getting someone to look at this correctly! I don't have any real advice on this for you, but I wanted to let you know I'm thinking about you. Don't give up trying to get someone to look at your thyroid closely. Alot of MD's don't know much about it so they brush it off until things are much worse. Don't stop fighting for yourself!!

Hillary


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## jhh2828 (Mar 20, 2010)

i went to the doctors today and they didnt draw blood to test for anything i mentioned the other stuff and the doctor was like thats all endocrine and to see the endocrinologist.so i mentioned to the doctor as well as the lady who does pressure and temperature that i never received the referral.it turns out the doctor doesnt know what he is doing-for he told me i could take it anywhere then today he tells me he will give me copy of results then he doesnt and then i say a guy at the clinic who tells me i have to find an endo in particular then call him up and he will fax the referral over.i had a slight fever today-temp 99.0 and didnt get a look at the results from before so i wasted my time even going to the doctors today.i am not scheduling another appointment at that clinic anytime soon and when my state aid program comes in prolly in like 4 weeks i am gonna switch.

i dont even understand that clinic seen one lady first day then man who told me results the 2nd day then i was supposed to have appt with another lady today but instead (i guess she wasnt in)i had that man from last time(who btw told me he would consult with the first doctor about my results and i asked him and he said he hadnt)oh and he told me last time that the clinic doesnt have an endo and the guy today who i spoke with afterwards said they do have one who comes in once a month and sees like 5 or 6 people and if i cant find one he could schedule me in but it would be like 5 or 6 months from now.the lady doctor i had first time told me if nothing showed up theyd look into more things and this man doctor doesnt want to test me for anything.

all they want to do at that clinic really is give people shots for things like hepatits a and b and all and ofcourse with a fever i got outta that one and i dont do drugs and am not having sex currently i feel way too icky.


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## Andros (Aug 26, 2009)

jhh2828 said:


> i went to the doctors today and they didnt draw blood to test for anything i mentioned the other stuff and the doctor was like thats all endocrine and to see the endocrinologist.so i mentioned to the doctor as well as the lady who does pressure and temperature that i never received the referral.it turns out the doctor doesnt know what he is doing-for he told me i could take it anywhere then today he tells me he will give me copy of results then he doesnt and then i say a guy at the clinic who tells me i have to find an endo in particular then call him up and he will fax the referral over.i had a slight fever today-temp 99.0 and didnt get a look at the results from before so i wasted my time even going to the doctors today.i am not scheduling another appointment at that clinic anytime soon and when my state aid program comes in prolly in like 4 weeks i am gonna switch.
> 
> i dont even understand that clinic seen one lady first day then man who told me results the 2nd day then i was supposed to have appt with another lady today but instead (i guess she wasnt in)i had that man from last time(who btw told me he would consult with the first doctor about my results and i asked him and he said he hadnt)oh and he told me last time that the clinic doesnt have an endo and the guy today who i spoke with afterwards said they do have one who comes in once a month and sees like 5 or 6 people and if i cant find one he could schedule me in but it would be like 5 or 6 months from now.the lady doctor i had first time told me if nothing showed up theyd look into more things and this man doctor doesnt want to test me for anything.
> 
> all they want to do at that clinic really is give people shots for things like hepatits a and b and all and ofcourse with a fever i got outta that one and i dont do drugs and am not having sex currently i feel way too icky.


Well; I sure hope your state aid comes in quickly as it sounds like you need help.

But meanwhile, if you have the time, be persistant at this clinic. I know it is aggravating but sooner or later, you may get into the right channels.


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## jhh2828 (Mar 20, 2010)

ok state aid has come in now and also the place im being referred to contacted the clinic and told them they wanted more tests done so i went in thursday and had blood drawn(i asked what all they were testing me for and the lady said she couldnt find the paper and was gonna have to recall the place to get that information)i did get my labwork from the previous time and will post the thyroid stuff first then the stuff that came out out of range and tell me what u think.

tsh 0.40-4.50 and mine was 6.98
t3 free 230-420 and mine was 293
t4 total 4.5-12.5 and mine was 9.7

from basic metabolic panel
urea nitrogen 7-25 and mine was 6
creatinine 0.80-1.30 and mine was 0.78

from cholesterol panel
ldl calculated 107 out of 00-100

and
blood pressure was 133/85 temperature was 99.0f
heart rythm-irregular
pulse:155


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## jhh2828 (Mar 20, 2010)

i want to see the endocrinologist today and seen the results from the last blood draw-free t4 was 1.01 this time free t3 was in the 300's -346 and tsh was 5.68 and they drew blood today to check tsh again as well as antibodies and other things.
the endo felt my thyroid and said i didnt have one and then another endo came in-the head endo-and he said it was really small.
they said if the tsh was elevated still or if the antibodies show up or both that they will call in a script for me.
do you think i could have ords thyroiditis?


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## hillaryedrn (Dec 14, 2009)

Wow!! Did they say anything about your pulse?? That is incredibly high! I would expect it to be high if your labs showed you wer hyper, but they are actually hypo. That heart rate is really disturbing. Your resting heart rate should be more like 80. To be honest, I would be more concerned about that than anything! I am glad that you are getting some answers tho. I know how frustrated you must be! Let us know what all the labwork shows. Even the things that are in range.


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## chopper (Mar 4, 2007)

Wow that pulse is high.

ok..First....do you think you have some sort of panic disorder? I know you've probably heard it before and me and you have very similar symptoms but even my heart rate won't go that high at the docs. I'll get into the 120's at the docs due to nerves but not that high. Something is up.

Read my story about Hashitoxicosis.

You need a TSI test. I'll bet that ends up being the culprit.

Here's the link. Tell me if any of this sounds familiar...

http://www.thyroidboards.com/hashitoxicosis/


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## hillaryedrn (Dec 14, 2009)

I agree with phil, something is indeed up. I'm not even sure with a panic disorder that your pulse would be that high. I have a panic disorder and am prone to sudden and unexplained panic attacks and my pulse also only gets into the 120's. I'm sorry to focus on that, but as an ER nurse with cardiac experience, that just worries me.


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## GD Women (Mar 5, 2007)

You are borderline hypothyroid. Antibodies will distinguish between hypothyroid, autoimmune or thyroiditis.

I agree with the others, your pulse is high. 70 is about the average norm. I believe 60 to 100 is the range.

The issues would be if its a constant high. Puls like blood pressure can fluctuate from minute to minute, hour to hour, from day to day, week to week and so on. Puls can be effected by many reasons or causes. So its the constant that is the determining factor.

I am always taking my plus by hand and my blood pressure - I have a blood pressure machine that also takes the puls.

Hang in there!


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## jhh2828 (Mar 20, 2010)

perhaps you could call it panic type disorder-im sure it went up from the doctors i could feel it beating fast (real fast)then.generally i never feel my heart beating and walk alot (have done 20 miles most wks for ages and sometimes do as many as 45-its the only exercise that doesnt wear me out completely).yeah and im sure the nerves had pressure slightly off.i was a lil nervous yesterday in the waiting room and felt heart beat start getting out of hand and had to calm it down so tried to think relaxing thoughts.i dunno if they checked the pulse there or not but blood pressure was 123 over 82 which is decent.one time several yrs ago i went to the er and from the doctor phobia pulse skyrocketed and they made me do ekg which said heart fine and the pulse slowed down while they were monitoring it/me and they drug tested me lol i think they thought i was overdosing.

the only other time my pulse speeds up is if i get up real fast off of say the sofa especially from a lying position and then run up the stairs but no where near the 150 range.

i seen the paper of what was being tested this time it was 5 things on the page and 2 in the extra column-they were testing me for the following(some of these upon hearing that ive been vegetarian for 10 yrs)vitamin d,vitamin b12,folate,tpoab(none of the other antibodies i wish theyd have tested for all of em),and i dont recall the others.


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## jhh2828 (Mar 20, 2010)

oh testosterone was one of the others and i think maybe lactate.


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## hillaryedrn (Dec 14, 2009)

Yeah, ok, my heart will race like that when I stand up as well. It just made me nervous there. If it was a one time thing, then that's ok. Post those results when you get them!


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## jhh2828 (Mar 20, 2010)

do you think the endo(first one i seen-before the one in charge came in as well)thought i had something else wrong instead of hypothyroid or a few things wrong some of the questions asked made me wonder:
like really wanted to know family history esp of brothers that i dont have-i have 2 sisters
then asked me if i had breasts
asked if i had been leaking milk.a few times ive felt like someting leaks but its clearish in form but i didnt say so cos it could just be sweat dripping down but nipple hurts a lil when it feels like clear stuff drips down.i should have said so but felt embarassed.
asked me if i had ever been exposed to radiation like rai when couldnt find thyroid.i was like no cos i def havent been purposelly and i doubt id have been around someone who had it done and was walking round town.
when feeling my skin said it wasnt that dry-as in hypothyroid dry even tho i have dry hair,dandruff,and hands dry in between fingers/fingerwebs said hypothyroid skin is thick feeling etc.
i was thinking did she think i could have prolactinoma or cushings i wish they would have tested me i had those on list i wanted tested at the other doctors before who didnt wanna test me if i dont hear back from them on the followup visit i will definitely ask for other things to be tested if i dont get my new primary doctor to test first which i will prolly do.
then i was thinking maybe she thought i had klinefelters xxy -cos of my build and look i look alot younger and am built like the thin variant of klinefelters with long legs and little upper body or mosaic klinefelters maybe i do have mosaic who knows.

thing is i def have no breasts lol-thank god-only weigh 116 lbs and its not like my body is hairless or just female type body hair i have body hair everywhere and it seems like more coming maybe my cortisol is thru the roof.im sure if she was suspecting say cushings was cancelling it out cos of my weight.i do have weird stretch marks on my back and butt tho that are pretty thick/deep but maybe they were there and i never noticed them like from growing and skin naturally stretching in puberty but noticed them a few yrs after puberty..i dunno is anyones stretch marks deep that u can feel the indentation.i wonder if when they asked about breasts if they were thinking cushings,xxy or really hypothyroid -do men with hypothyroid grow breasts?oh and sometimes i sweat quite a bit-wake up in sweat on ocassion and have sweating attacks from time to time-i know most people with hypothyroid-hypothyroid alone and no other medical issues dont sweat.

i am gonna call my new primary doctors office tomorrow to set up an appointment.


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## hillaryedrn (Dec 14, 2009)

Ok, you need to go back in and tell them the truth. Get over being embarassed!! That is how people end up getting wrong diagnosis and stuff like that. Doctor's don't judge, they aren't going to laugh, they aren't going to poke fun, etc. Make a list of your symptoms and things you want to bring up (i.e. the leakage from nipples, strange stretch marks, dry skin, etc.) and take it with you to the appointment. Hand them the list, then verbally reiterate it. Please, tell them everything!! It really does make a difference!


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## chopper (Mar 4, 2007)

Agree with Hillaryedrn. You have to "man up" and get over being embarassed. There is nothing your doctor has not seen before. Will you be nervous - of course but unless you get it all out on the table for the doctor to see you will never be diagnosed or worse, you will be improperly diagnosed. Go back and let the doctor know you left out a few things and tell him or her EVERYTHING that's going on - even if you think it might be just mental - everything. Better yet, write it down and hand the doctor a note if you must this way you don't leave anything out due to nerves. I almost always bring a cheat sheet with me to the endo to this day just so I don't leave there saying "why didnt I ask him about...."


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## jhh2828 (Mar 20, 2010)

the doctor called me yesterday morning and i wasnt available to answer the phone and i called back and left a message then i called again today and doctor told me she called in a script for synthroid cos the tsh was still high-didnt mention the antibodies-so maybe they were ok i dunno.i assume the b vitamins and testosterone were alright cos she didnt mention them.she said the vitamin d was low so also called in a vitamin d script then said when it runs out to get it over the counter.i didnt receive ranges or levels etc so wont know till september.doctor told me to call if i have palpitations or anything like that.the synthroid dose is 75 mcg-is that an ok dose to start off at?i hope it helps.

alot of people think i look pale-its true i try and avoid the sun and it goes it shows quite a bit considering im of greco-roman descent.


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## Andros (Aug 26, 2009)

jhh2828 said:


> the doctor called me yesterday morning and i wasnt available to answer the phone and i called back and left a message then i called again today and doctor told me she called in a script for synthroid cos the tsh was still high-didnt mention the antibodies-so maybe they were ok i dunno.i assume the b vitamins and testosterone were alright cos she didnt mention them.she said the vitamin d was low so also called in a vitamin d script then said when it runs out to get it over the counter.i didnt receive ranges or levels etc so wont know till september.doctor told me to call if i have palpitations or anything like that.the synthroid dose is 75 mcg-is that an ok dose to start off at?i hope it helps.
> 
> alot of people think i look pale-its true i try and avoid the sun and it goes it shows quite a bit considering im of greco-roman descent.


Hi there! 75 mcg is a rather high dose to start on. Most are started on about 50 mcg. or less. However, the protocul is to get labs every 8 weeks to monitor the progress of your Synthoid and based on the lab tests and your clinical evaluation, the doctor should either titrate your dose up or down as needed.

I am not fond of the idea that you are left to your own devices until Sept..

Also, you have a legal right to a copy of your lab results and ranges. It would be good if you could get them and post them here. We could better help you then.


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## jhh2828 (Mar 20, 2010)

well i could maybe get regular doctor to check blood results prior to early september.
the doctor told me i could have the results from the previous labs(from the clinic) when there i should have took her packet,maybe i can ask for a copy of the results.

(2 things totally off topic-1. isnt it also illegal for those with eyeglasses/or contacts to not be given a copy of their prescription.i went to pick up my glasses the other day and the prescription was on the envelope they were in but lady opened envelope and kept it and just gave me the glasses and no paper work however last time i was there i seen them give a man his information.i realize state aid only helps with one pair a year but still what if i wanted to pay with my own money.2.i have a hard time swallowing pills especially when my gerd is acting up and i cant take meds for it with the synthroid so i drank some water then tried swallowing synthroid then went to remove synthroid from mouth for a sec and noticed it was melting then put back in and added water and swallowed-is that ok?and secondly are u allowed to ever chew sythroid-i didnt chew it-is it ok if it starts dissolving before swallowing?


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## GD Women (Mar 5, 2007)

I would ask for a itemized receipt. Don't know about the legal status but if you ask I believe they must give it to you. Each state is different on how the handle issues legally. So not sure.

I don't believe they make a Sublinqually t4, but you could try it. You might have to keep it there for a while for it to dissolve and then rinse and drink the water. I don't think anything is wrong with chewing as long as you rise around with water and then drink it to get a the little granules.

I was started out on 100 mcg. Levoxyl. I believe it is the norm for doctors because they are to much in a hurry to figure the does out per our age, weight, etc. But I believe going low and slow so not to over shoot (under shoot) level is best.

You last Labs, if you live too far to pick them up, perhaps they can mail them to you or email. Call them and see if they will arrange it.

If you just started thyroid meds or new dose, then September would be the latest to wait to redo Labs but no earlier than 6 weeks from start of meds.


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## jhh2828 (Mar 20, 2010)

well i have took the synthroid(actually they gave me the generic- l-thyroxine so far so good for 7 days now and havent encountered any problems swallowing it-oh i did see online it said for kids and people who have problems swallowing it to crush it up and put on spoon with water.

however i am having a hard time with the vitamin d capsules-i swallowed the first one fine-tried the other day several times and couldnt do it then it was melting/leaking then tried today and couldnt swallow it-could u crush the capsule and drink the liquid or get in another form-drops or tablets-i may just get vitamin d over the counter in tablet form.

not to mention i am not the hugest fan of capsules-cos they contain gelatin right?and im a vegetarian.

god i hope synthroid works-so far i dont feel any different-maybe its cos just started and dosage may not be perfect i really dont wanna take armour cos id feel like a fake vegetarian.


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## jhh2828 (Mar 20, 2010)

oh the hospital with labs isnt far at all like 3 miles from my house i could easily walk there and back .i have done it alot or i could take a bus or cab.i dont drive and dont need to as baltimore is rather pedestrian friendly.


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## Andros (Aug 26, 2009)

jhh2828 said:


> oh the hospital with labs isnt far at all like 3 miles from my house i could easily walk there and back .i have done it alot or i could take a bus or cab.i dont drive and dont need to as baltimore is rather pedestrian friendly.


How did you make out w/getting your eye glasses prescription? I hope the Synthroid works also but if you are a strict vegan, you can always talk to the doctor about adding Cytomel (T3.)


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## jhh2828 (Mar 20, 2010)

yeah i got tbat prescription.
if i dont feel well after perhaps a dose or two increase i will ask for cytomel.

i am gonna have my primary doc check my levels after 8 wks on it instead of waiting for 12 at the endos.


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## Andros (Aug 26, 2009)

jhh2828 said:


> yeah i got tbat prescription.
> if i dont feel well after perhaps a dose or two increase i will ask for cytomel.
> 
> i am gonna have my primary doc check my levels after 8 wks on it instead of waiting for 12 at the endos.


Very excellent! Yes; labs should be every 8 weeks during the titration process. Once you stabilize, every quarter is fine for labs.

Good to hear from you! Are you feeling any better at all?


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## jhh2828 (Mar 20, 2010)

im not really feeling any better.have been real tired/sleepy still.wasnt real constipated a few days but then it appears to have returned.i think its 17 pills ive took so far so maybe too soon.


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## Andros (Aug 26, 2009)

jhh2828 said:


> im not really feeling any better.have been real tired/sleepy still.wasnt real constipated a few days but then it appears to have returned.i think its 17 pills ive took so far so maybe too soon.


It is too soon; it takes 8 weeks for the T4 to completely build up. You should feel some better at the 4 week mark. I hope.


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## jhh2828 (Mar 20, 2010)

(this is off topic maybe possibly-but help please)my twin sister has had her period for over 2 months and for the past 2 days her face is swollen just on the left side and her face looks off like her smile seems crookedish could it be thyroid related or would swelling be on both sides-and could it be from like an insect bite or something.


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## Andros (Aug 26, 2009)

jhh2828 said:


> (this is off topic maybe possibly-but help please)my twin sister has had her period for over 2 months and for the past 2 days her face is swollen just on the left side and her face looks off like her smile seems crookedish could it be thyroid related or would swelling be on both sides-and could it be from like an insect bite or something.


She could have Bell's Palsy. I think it would be very very wise to see a doctor ASAP because if it is Bell's much can be done within a 48 hour time frame.


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## GD Women (Mar 5, 2007)

I would think she needs to go to the doctor and get it straighten out. Never know what the cause might be.

Prolonged periods can cause anemic.

Poor thing she must be miserable.


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## Andros (Aug 26, 2009)

jhh2828 said:


> (this is off topic maybe possibly-but help please)my twin sister has had her period for over 2 months and for the past 2 days her face is swollen just on the left side and her face looks off like her smile seems crookedish could it be thyroid related or would swelling be on both sides-and could it be from like an insect bite or something.


Your sis really needs to go to the doctor. I have been thinking about this; it could be anything. Abscess for example.

Let us know; you must urge her to seek medical opinion.


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## jhh2828 (Mar 20, 2010)

my sister,mom,and i went to the er and they did urine and blood and said she wasnt anemic and not pregnant and kidneys and liver were fine and everything came back ok and thyroid comes back tomorrow so she will know then if thats the cause.they told her maybe she needs to go on birth control to regulate her cycle.the guy at the er acted as if he didnt know why her face is swollen.she said she dont have like sac on gum of tooth she does have a cavity unfilled and showed it to the doctor and he said he dont think its from that.i told her if it gets worse-the swelling to try somewhere else or go back there.she told me she hopes she didnt have a stroke or anything...she can move her face and can feel it if someone touches it.maybe an insect could have bit her i dunno.thanks for your concern guys.


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## jhh2828 (Mar 20, 2010)

my sisters tsh is 72.they didnt tell her what her t4 was and of course they didnt test t3 now she is calling the hospitals endocrine clinic for appointment and hopefully can get an appointment right away.

yesterday the doctor said her thyroid felt small maybe we were born with tiny ones tho we were premature and our mom was 41 when she had us.


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## Andros (Aug 26, 2009)

jhh2828 said:


> my sisters tsh is 72.they didnt tell her what her t4 was and of course they didnt test t3 now she is calling the hospitals endocrine clinic for appointment and hopefully can get an appointment right away.
> 
> yesterday the doctor said her thyroid felt small maybe we were born with tiny ones tho we were premature and our mom was 41 when she had us.


Lord have mercy!! That is so so high. OMG!! The poor dear must be terribly ill right now.

Make sure they check for Hashimoto's Encephalopathy. This does in fact mimic a stroke; usually on the right side.

Here is info.

http://emedicine.medscape.com/article/920283-overview

http://jcem.endojournals.org/cgi/content/full/86/2/947

http://autoimmunedisease.suite101.com/article.cfm/hashimoto_s_encephalopathy

I am not saying this is what she has but it needs to be ruled out because you mentioned initially that you and your mom thought your sis might have had a stroke. Now w/TSH that high; I began to wonder.

Have your mom read this stuff too; okay?


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## jhh2828 (Mar 20, 2010)

thank you for the information i wrote it down for her and we read the information u sent us and she has her appointment on this friday at 930 am so thank goodness they are getting her in right away and putting her on meds so im sure she will get them filled friday and start taking them saturday.


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## Andros (Aug 26, 2009)

jhh2828 said:


> thank you for the information i wrote it down for her and we read the information u sent us and she has her appointment on this friday at 930 am so thank goodness they are getting her in right away and putting her on meds so im sure she will get them filled friday and start taking them saturday.


You are welcome. Saying a prayer for "all" of you and please do let us know.


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## jhh2828 (Mar 20, 2010)

thank you very much andros.she went today to her endo appointment and they said her thyroid is twice the normal size and they started her on 100 mcg levothroid and want her to come back on the 29th of july to see them and to return to the hospital on the 27th for bloodwork(free t4and tsh) so that they will have the results when she returns and they did more bloodwork today(i havent a clue what i asked her if she read the paper they gave her when she took it to the lab she said no-my mom went with her today).she is going to a different hospital then i am for treatment.


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## Andros (Aug 26, 2009)

jhh2828 said:


> thank you very much andros.she went today to her endo appointment and they said her thyroid is twice the normal size and they started her on 100 mcg levothroid and want her to come back on the 29th of july to see them and to return to the hospital on the 27th for bloodwork(free t4and tsh) so that they will have the results when she returns and they did more bloodwork today(i havent a clue what i asked her if she read the paper they gave her when she took it to the lab she said no-my mom went with her today).she is going to a different hospital then i am for treatment.


I am just relieved your sis is getting medical intervention. You will have to let us know if her face has gone down and of course we are all anxious to read the lab results and please do include the ranges as different labs use different ranges.


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## Andros (Aug 26, 2009)

Andros said:


> I am just relieved your sis is getting medical intervention. You will have to let us know if her face has gone down and of course we are all anxious to read the lab results and please do include the ranges as different labs use different ranges.


I advise your sis to start getting copies of her labs now, starting a folder.................; so that she can track her medical history. This is vitally important w/chronic disease.


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## jhh2828 (Mar 20, 2010)

yes my sisters face has went down.she got the er results in the mail but not the bloodwork from last friday so far.

her tsh was-72.800 and range was 0.400-4.000
and total t4 was 4.2 and range was 4.0-12.0 
and they didnt test t3 that time at all.

as for me today was day 28 so have to go soon to get refill.


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## jhh2828 (Mar 20, 2010)

my sister went yesterday for bloodwork and today to see the endo(different one this time) they are keeping her on 100 mcg of synthroid and they did ultrasound and think she has a nodule.

as for me i have an appointment tomorrow with the doctor (primary)and ive been on the synthroid for 7 and a half wks now at 75 mcg and still feel icky.


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## Andros (Aug 26, 2009)

jhh2828 said:


> my sister went yesterday for bloodwork and today to see the endo(different one this time) they are keeping her on 100 mcg of synthroid and they did ultrasound and think she has a nodule.
> 
> as for me i have an appointment tomorrow with the doctor (primary)and ive been on the synthroid for 7 and a half wks now at 75 mcg and still feel icky.


Good to hear from you. I missed your other post somehow so I am glad that your sis is doing better and will be anxious to see how far down that TSH has come. Did the swelling in her face go down?

Please let us know how you are doing as well. It takes time to feel un-icky. You are on the right track. Well be anxious to see your labs also.


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## jhh2828 (Mar 20, 2010)

yes the swelling went down.the doctor told her he dont think she has Hashimoto's Encephalopathy cos he said that only occurs in extreme cases and didnt consider hers extreme.
her doctor told her she should be feeling alot better now and said the dosage is fine for now.

my doctor finally called me about an hour ago from when i had bloodwork done last wednesday and he told me to stop taking the synthroid now because i have went hyperthyroid.at the appointment my heart rate was high but was before starting meds and i had a temperature of almost 100 but he didnt think it was from the synthroid and tested various other possibilities as well as testing the thyroid.

i am gonna have full antibody panel done this wednesday at next appointment with him cos maybe i have high tsi antibodies.

i havent got diarrhea or anything.i do have some leg bone pain sometimes which is new and that can occur with hyperthyroid right?didnt have any insomnia or anything.i wont have a heart attack right?how long will it take for the synthroid to exit i know half life is seven days so like 14 days?

susan said she is gonna ask for her records/results for herself to have next time she goes in september.

i am so glad i made the appointment with a doctor prior to the endo appt on sept 2nd and thanks andros for telling me not to wait that long to go and warning me of the danger.i dont think i am gonna go back to the endo to be honest cos my state aid dont cover specialists cos its not medicaid and i did get hospital to write off hospital portion still the doctor portion is $$$ especially when i like the general doctor and he told me he will tell me what to do on wednesday.

is it ok beings ive went hyper to go off the meds cold turkey like the doctor told me to do?or should i take a half a pill a day or two.

i never did feel good on it at all really.what dosage do u think i will start at next time 50mcg or 25mcg or other?

i know its not from not doing enough to use up the synthroid.i have taken it 55 days total (cos i have 5 pills left in first refill)which is almost 8 weeks cos most days(even with the humidness on the east coast)ive walked around 5 miles-sometimes over(prolly over 30 of those days)and only maybe 5 just did stuff in the house and other 20 walked atleast 3 miles.

and if i was over last wednesday at like 7 wks almost (and i didnt take a pill that day before appointment).

do u think i would do better taking it at exactly the same time every day-susan does she sets clock and goes back to bed sometimes.i have always took it within a 2 and a half hr window and not like every day skipping 2 and a half hrs usually within a half hr to hr of previous day if not sooner.

you dont think i will start taking meds again next thursday do you-day after appt?

as of last wk at appt didnt really lose or gain much weight i was 115 and when i went to the endo i was 116 before starting synthroid.i really dont wanna weigh 90lbs so hope i havent lost alot since last wednesday.

and how long before last wednesday do u think i was hyperthyroid?i started feeling really hot and sweaty and feverish like 2 days before then like last monday.

i never really sweat much but assumed i was sweating more due to the record breaking scorching summer heat this season.


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## Andros (Aug 26, 2009)

jhh2828 said:


> yes the swelling went down.the doctor told her he dont think she has Hashimoto's Encephalopathy cos he said that only occurs in extreme cases and didnt consider hers extreme.
> her doctor told her she should be feeling alot better now and said the dosage is fine for now.
> 
> my doctor finally called me about an hour ago from when i had bloodwork done last wednesday and he told me to stop taking the synthroid now because i have went hyperthyroid.at the appointment my heart rate was high but was before starting meds and i had a temperature of almost 100 but he didnt think it was from the synthroid and tested various other possibilities as well as testing the thyroid.
> ...


My dear; TSI means hyperthyroid. Don't know why the doc has you on Synthroid.

Please read.

http://www.hopkinsmedicine.org/endocrine/graves/Answer.asp?QuestionID=22

http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

In reading the second one, you will see that the healthy individual should have no TSI and if they do, that means hyperthyroid.


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## jhh2828 (Mar 20, 2010)

well i went to the doctors today and he said he doesnt know for sure if i even need the synthroid and if i do i should start at 25mcg.
he hasnt received any of my records that i allowed him access to for the other doctors havent sent him anything.
my body temp today was back down to 99.0 and heart rate was in the 120's.
he said he doesntt think the synthroid will leave and thyroid will be back to normal(prior to synthroid)for 6 weeks.
he didnt test anything today even antibodies and said i should have the tgab tested.he doesnt know what tsi and tbii even are and said to have the endo do those labs on the 2nd of september and i see him on the 8th of september.
my vitamin d was 32.9 which is in range i havent a clue what it was before.
i asked him if i could have hashitoxicosis (like nasdaqphil said i could have)or hypo and hyper thryoid and he said maybe i could have both hypo and hyper.he asked about the results for the tpoab and i told him the endo never told me over the phone.

from the bloodwork from two weeks ago(on just under 7 wks of synthroid)
tsh was 0.006 (is that real bad and extremely hyperthyroid)
free t4 was 15.1 (is that real bad and extremely hyperthryoid)
free t3 was 421 (is that real bad and extremely hyperthyroid)

i didnt copy the ranges down remembered those and wrote em on paper afterwards.
he had his secretary fax over those lab results to the endocrinologist.

how long do you think it will take for the values to come down significantly-ive been off the meds now for 6 days. my endo appt is in 3 wks on september 2nd do u think most the synthroid will have exited my body by that time-4 weeks since going off the synthroid.


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## jhh2828 (Mar 20, 2010)

do you think i could have hyperparathyroidism instead of a thyroid problem?the reason i am asking is some of the symptoms are similar and my vitamin d was low and calcium was 10.1 out of 8.6-10.4 and with vitamin d low shouldnt it have been lower and now that vitamin d is in range maybe it is over and i read that almost no one without a problem such as hyperparathyroidism even has calcium over 10 especially with low vitamin d.i guess i will ask the endo to test vit d along with calcium and parathyroid hormone on thursday as well as do the thyroid antibodies (other then tpo-which has been run).does anyone know anyone who ever had hyperparathyroidism?


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## Andros (Aug 26, 2009)

jhh2828 said:


> well i went to the doctors today and he said he doesnt know for sure if i even need the synthroid and if i do i should start at 25mcg.
> he hasnt received any of my records that i allowed him access to for the other doctors havent sent him anything.
> my body temp today was back down to 99.0 and heart rate was in the 120's.
> he said he doesntt think the synthroid will leave and thyroid will be back to normal(prior to synthroid)for 6 weeks.
> ...


Most of it will have. It usually takes about 8 weeks.


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## Andros (Aug 26, 2009)

jhh2828 said:


> do you think i could have hyperparathyroidism instead of a thyroid problem?the reason i am asking is some of the symptoms are similar and my vitamin d was low and calcium was 10.1 out of 8.6-10.4 and with vitamin d low shouldnt it have been lower and now that vitamin d is in range maybe it is over and i read that almost no one without a problem such as hyperparathyroidism even has calcium over 10 especially with low vitamin d.i guess i will ask the endo to test vit d along with calcium and parathyroid hormone on thursday as well as do the thyroid antibodies (other then tpo-which has been run).does anyone know anyone who ever had hyperparathyroidism?


When someone has autoimmune thyroid, the body down regulates the vitamin D. Do you consume a lot of calcium?

If I were doing this,I would want to cross one bridge at a time. You need to get all those antibodies' tests. Hyperparathyoidism is possible but not very common.


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## jhh2828 (Mar 20, 2010)

for calcium i eat alot of dairy but dont take vitamins etc.
went to endo appt and doctor appt.heart rate was 84 bpm which is better.
they still havent tested the antibodies i should have wrote them down myself for the endo gave me paper to show pcp if they wanted anything added before going back to hospital where endo is for bloodwork.they did test parathyroid which is fine.basically i had free t3 and free t4 tested as well as tsh and pth and comprehensice metabolic panel.
keep in mind from the previous tsh of 0.06 i had took it for another week it may have hit 0.00 if possible.the endo called me today and said free t4 was 1.01 and tsh was 0.01 and is still suppresed and asked if i was taking the meds again and i said no and endo told me to stay away from them.
i asked this endo what my tpo antibodies test said when i had that one done and she said less then 10.the endo dont want to see me anymore for now and i dont have an appointment with pcp until december so i think i am gonna have to find another clinic type place to test the antibodies.

i thought the comprehenive metabolic panel was dumb to have done unless taking the synthroid couldve messed things up cos i just had basic one done in march-march 1st and like a month prior had other things tested not on basic but on comprehensive like protein and albumin at the pcp atleast i didnt have another cbc done -which i had one done in march as well as a urinalysis.

the last synthroid pill i took was 6 weeks ago tomorrow and had blood drawn yesterday-tuesday.

if i dont have a thyroid issue then i dont know what else it could be unless its mental or lyme disease or multiple sclerosis or celiac or something of the like why i feel icky and tired and sensation is off.

i just heard of a cheap clinic near me so i think i am going to go there to have some antibody testing done if they will do it if not will beg pcp to do it.


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## Andros (Aug 26, 2009)

jhh2828 said:


> for calcium i eat alot of dairy but dont take vitamins etc.
> went to endo appt and doctor appt.heart rate was 84 bpm which is better.
> they still havent tested the antibodies i should have wrote them down myself for the endo gave me paper to show pcp if they wanted anything added before going back to hospital where endo is for bloodwork.they did test parathyroid which is fine.basically i had free t3 and free t4 tested as well as tsh and pth and comprehensice metabolic panel.
> keep in mind from the previous tsh of 0.06 i had took it for another week it may have hit 0.00 if possible.the endo called me today and said free t4 was 1.01 and tsh was 0.01 and is still suppresed and asked if i was taking the meds again and i said no and endo told me to stay away from them.
> ...


This is the answer. If you can, get those antibodies done. If you have a Health Check USA near you, you can just order the tests yourself.

It takes 8 weeks and sometimes longer for the Synthroid (T4) to clear your system so that may have skewed your tests. As to the FT4, w/o the ranges,I could not wager an opinion.

Your doctor is testing everything you don't need and not testing what you do need.

Here is the list again in case you cannot find it.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

Here is http://www.healthcheckusa.com/ See if you have one in your area.

Let us know.


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## CA-Lynn (Apr 29, 2010)

Don't ever knock the complete metabolic panel. It tells how your body is doing in light of everything else and can point to anything going remiss. I have a CMP every three months when my blood is tested.


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## jhh2828 (Mar 20, 2010)

i dont have the money to pay for the tests-non insurance-out of pocket and havent a clue if a healthcheckusa is near me.i know the doctor sucks i am calling tomorrow to switch doctors.i went for follow up visit on the 8th and called the 15th and 22nd for results and the doctor finally called today.he said my vitamin d is low again at 15 so what i couldnt care less honestly because i think it just downgrades it like andros said.he said my free t3 and free t4s are in normal and said my tsh is up and i said what is it he said 10.43 and i said thats higher then it has ever been and he said maybe im making the turn to hypo(fullblown) and said to wait to march at next appt and if its high then start on 25mcg hell no im not waiting that long i feel awful and tired and he said maybe i feel tired and weak because i need to gain weight.isnt a tsh over 10 no matter what considered full hypothyroid.i thought about calling him back and saying if you dont call in a script i wont be back but instead im just going to not go back there.i still cant believe it took the doctor almost 3 wks to get back to me when he told me theyd be in by the monday after my appt and both times i called they said my results were on his desk and he hadnt looked at them yet.

my twin sister was getting a bit much her endo said and lowered her to 88mcg like 2 weeks ago.

now lets say hypothetically if you are hyperthyroid induced via meds and then go off and thyroid returns to normal or is returning to normal i doubt tsh will go from 0.002 range and free t3 and free t4 way over the charts to tsh of 10.43 unless i need the freaking meds.

i am calling to make a psychiatrist appointment tomorrow as well.


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## sarah_r (Sep 17, 2010)

I just wanted to share my latest blog post about the experience of being unwell..and kinda alone in it http://theansweriswriting.blogspot.com/2011/01/its-not-over-til-its-over.html


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## Andros (Aug 26, 2009)

jhh2828 said:


> i dont have the money to pay for the tests-non insurance-out of pocket and havent a clue if a healthcheckusa is near me.i know the doctor sucks i am calling tomorrow to switch doctors.i went for follow up visit on the 8th and called the 15th and 22nd for results and the doctor finally called today.he said my vitamin d is low again at 15 so what i couldnt care less honestly because i think it just downgrades it like andros said.he said my free t3 and free t4s are in normal and said my tsh is up and i said what is it he said 10.43 and i said thats higher then it has ever been and he said maybe im making the turn to hypo(fullblown) and said to wait to march at next appt and if its high then start on 25mcg hell no im not waiting that long i feel awful and tired and he said maybe i feel tired and weak because i need to gain weight.isnt a tsh over 10 no matter what considered full hypothyroid.i thought about calling him back and saying if you dont call in a script i wont be back but instead im just going to not go back there.i still cant believe it took the doctor almost 3 wks to get back to me when he told me theyd be in by the monday after my appt and both times i called they said my results were on his desk and he hadnt looked at them yet.
> 
> my twin sister was getting a bit much her endo said and lowered her to 88mcg like 2 weeks ago.
> 
> ...


You are receiving the most horrible treatment. I am so sorry for you right now.

On the bright side; you "do" know that a psychiatrist is medically trained first and formost and he/she can script thyroxine replacement for you? I know you don't feel well but I do recommend that you get a copy of those labs because psychiatrist needs to know where your FREE T3 is at also. You may need a combo T4 and T3 med. Capiche?

You are in my prayers. Do let us know and by the way, I sure do know what it is like to not be able to afford medical care or any other thing for that matter. Sadly, it's a growing group.

group hug


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