1139187 tn?1355710247
erfa
Ok for the sake of not hijacking the other thread on the subject of Erfa i had a couple questions.

For those of you who take Erfa,  do you take your entire daily dose at once or do you split dose?  There was a very defensive argument on the Erfa page a while back regarding multi dosing.  The head pharmacist said it was made to dose only once a day.  But we all know what is good for one, may not be good for another.

Also,  does anyone know the chemical compound of a 1 grain pill (t4 and t3)?
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535882 tn?1396580285
bruce your running out of options . there aren't  any thyroid meds left to try. do yourself a favor . get a plan and stick to it!  strive for health it doesn't happen overnight! takes time!
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1139187 tn?1355710247
I'm going to stick with this stuff i promise.  But i can tell you that i feel like I've got the freakin flu all the time now and my ears are ringing off the walls.
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1139187 tn?1355710247
I have a really hard time sleeping , the ear ringing and buzzing is horrible.  I take ambien but i feel like its adding to my day time grogginess.  natural stuff isn't strong enough for me.  I have to get to bed by midnight despite the fact i can literally stay up for 24 hours straight with no tiredness.  Does anyone have any suggestions on something i can discuss with my dr?>
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649848 tn?1484935765
If you feel like you have the flu, maybe you do - it can take weeks to get over it......

My ears ring continuously; have most of my life - long before thyroid issues; sometimes I can ignore it, sometimes it's really annoying, but, in the whole scheme of things, if that were all I had to worry about, my life would be a walk in the park.

Thyroid is not the only thing that causes this. If it's so horrible that you can't deal with it, you need to look beyond thyroid.

Discuss with your doctor?  The ear ringing and ask her/him to point you in a different direction....... Have you had hearing tests?  Have you talked with an ENT about this?
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1139187 tn?1355710247
yes.  i think i need to go back again.  I've had a full work up.  One of the big things at the mayo was a vestubular work up.  I was there for 3 hours.  The only thing that they saw was "slight nystagma" or whatever that is, when they made me hypo ventilate...  but i think we would all have this if we hypo ventilated.  My ringing started 3 days after i took my first thyroid hormone pill.    Yes i guess if i felt better i wouldn't care either.  

I think i need a life coach.   Someone who has been through this.  :)

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649848 tn?1484935765
We've tried to coach you and you won't listen.

Perhaps we don't know the whole story? Have you had a brain injury of some type that would indicate a vestibular issue?

Nystagmus? Check this out:
http://www.nlm.nih.gov/medlineplus/ency/article/003037.htm
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798555 tn?1292791151
Ever get a cat scan of your head? I would think a Dr would have ordered one or an MRI by now.
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1139187 tn?1355710247
yes I've had plenty.  I may have another one.  

On august 19, 2009 i went to work.  My wife was having a baby that week, i started a new job and i just got done with having knee surgery.  I went to lunch and when i came back from lunch i felt really weird.  My back started to hurt really bad, i was very thirsty, my knees hurt, i was very shaky and i knew something was up.  I went home and told my wife, she thought i was just getting a cold.  I waited it out, we had dinner plans on saturday and my wife was mad at me because i was getting sick and wouldn't go to the dr. I went to one of those Doc in the box places and they thought i had a bladder infection from the swimming pool and told me to watch it.

My back pain got really bad.  I went to my family doc monday and he sent me for a kidney scan.  It was negative.  The back pain was getting worse.  Next thing you know, I'm seeing every dr. in town, no one could figure me out.  I had my gallbladder out and started seeing specialists.  I went and saw a new internal medicine dr. and he was smart enough to run TPA and Tgab on me and thats when it was discovered.

Whats weird is, at first i was only feeling bad like 30 minutes a day.  Then about a month later, it was like 2 hours a day, then 5 hours a day.  Then 24 hours a day.

I have had every test run known to mankind.  I sold my business in 2003 and have spent every dime on my medical testing.  I went to the mayo clinic for a week, that was a waste of time etc.   ALthough I have jumped around on meds, i have been on meds for a very long time with zero relief.   And the ear ringing is horrid.   It gets worse the bigger the dose of thyroid.  

If i don't take thyroid I'm exhausted, tsh shoots up, etc.  If I'm on thyroid, i have more energy but still feel like walking death.

Ok enough about me.  But thats what happened.  
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1139187 tn?1355710247
Here is everything i was put through before they finally decided the hashimotos was probably causing my symptoms.  I had a blood test that showed a unusual DNA protein in my blood that is typically associated with lymphoma so i had a full cancer work up and spinal tap because of that.  


But here ya go.  
MRI with without contrast brain  x 2
MRI with without contrast spinal cord
MRI kidneys, liver
Kidney sonogram
spinal tap/ Blood patch
2 sonograms thyroid no nodules
stomache scan
stomache MRI
Colonoscopy
MRI pituary gland
heart work up, stress test, Sonogram of heart
4 neurology work ups - head of neuro mayo clinic
full parkinsons work up/ ms work up - head of department ut southwestern medical
full lymes work up (twice)
sonogram of arteries in neck
vestibular work up
cancer work up including bone marrow biopsy
Full body cancer scan (peda scan)
MRI ears drums
Opthomology work up
ENT work up twice/ one by head of department ut southwestern medical
Pituary consultation head of pituary clinic, Harvard university Phone consult MRI reading
6 different endos in Dallas/ 1 in mayo flordia
3 neurologists
Infectious disease consultation
Celiac test
Full allergy work up for food
Rhizotomoy cold water kill back nerves t6-t10
Rhizotomy cold water kill neck nerves 6-9
Hidascan x 2
MRI of brain with / without to look for hashimotos encepholopothy
heart monitor
Gallbladder removal
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535882 tn?1396580285
Most of us here have been to a bunch of doctors , but in the end it turned out to be mostly the thyroid. but you have to stay on the thyroid med and give it time to heal yourself and get good levels to do that. not just jump around and change doses and meds all the time .the  thyroid causes so many problems that's why we get sent to so many different  specialist, but once the thyroid was "fixed " by meds or surgery,  it's amazing how all those symtoms dropped off , go away, over time.  so get with the program Bruce.!
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1139187 tn?1355710247
Well from what everything i have read, taking the hormone will eventually tell the brain to stop sending the signals to the thyroid to produce and to shut down and leave me alone.  At that point the body will rely soley on the hormone I'm taking.  I understand this, but it hasn't happened yet.  And the ear ringing goes on and on.  This whole week i felt like i had the flu even though i don't have the flu.  
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535882 tn?1396580285
sometimes a good counselor can act as a coach for you . help you through staying on course.
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Please stick with something....

It took me a year to get my dosage to where I felt normal, NOT GREAT, but normal...

18 yrs later still dealing with the dosage issues, so sometimes we are left with what symptoms we have & adjust to them. I still suffer from insomnia, muscles aches, night sweats, ears ringings. I did learn to "suck it up" because I do have to work so there is NO CHOICE for me financially.

Some symptoms may never go awasy & self medicating will not work.

Just give something time to work...Also think long & hard about getting a TT, once it is gone, there is no putting it back....

You are prisoner to a life long medication ...
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215461 tn?1331866365
I honestly think your tinnitus might not be caused by your thyroid. It is possibly your thyroid aggravates it (as it does to all areas of your body when it is out of whack).  If I were you, I'd really explore the ear ringing by itself just to see.  I'd go to a doctor and not even mention my thyroid.  If they are ONLY looking towards your thyroid, they might be missing something else.  As others have said, getting regulated is key, but if your tinnitus is caused by something else, you could be misinterpreting it as being caused by your thyroid meds.  Although hypothyroidism can cause tinnitus, your case seems to be extreme so it is worth exploring.  I know you mentioned working around music, were you exposed to loud noise often?  It could cause a type of hearing loss that leads to tinnitus, and this type is usually permanent.  An ear issue could also make you feel like you have the flu.  I really hope you find some answers and start feeling better.
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1139187 tn?1355710247
I sort of agree and yes i will explore.  However....   the ringing is only bad when i take they thyroid.  On the time period when i was on no thyroid- very little ear ringing.

In the afternoon, the ringing goes away, and then i take my afternoon dose and it comes back  uggh
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649848 tn?1484935765
Kevin hit the nail on the head: "sometimes a good counselor can act as a coach for you . help you through staying on course."  

But at some point, you have to take responsibility for what happens, too, because no one can hold your hand ALL the time and tell you what to do every step of the way ...... You're an adult and ultimately, must make a plan and take responsibility for your own health.  

Weren't you at one time on hydrocortisone for adrenal fatigue?  Are you still on it?
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1139187 tn?1355710247
No imnot.  That was a trial given to me by my family doctor.  It did make my nausea go away during the early days.  

Look y'all,  I freaking get it about sticking.  I'm sticking.  I'm not changing.  I've realized I will never feel like I did before this started.   I just want to get my *** back to work.   I threw all my hormones away except the erfa.

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Sometimes ..

Tough Love is needed....You have your whole future ahead of you....

Thyroid issues will either make or break you....
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535882 tn?1396580285
Truth!!!
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1139187 tn?1355710247
my erfa came today.  I was taking some old erfa i had from when this started a couple years ago, but got my fresh in today.  It only took 4 days from the time i ordered it , til it arriving at my door today.  Couldn't wait to take my second dose today (with the fresh erfa).  

I have 300 x 30 pills now so preying this will help.
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I also have hashimotos and have been on ERFA for a year and I have horrible ear ringing and a bunch of other weird symptoms like episodes of polydipsia and polyuria along with ataxia...trouble walking, clumbsiness, and my whole body going numb and I am wondering what is happening to me and what is wrong with me... so I don´t think the other guy with the horrible ear ringing is off about thinking the thyroid issue is what is causing his problems.
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798555 tn?1292791151
I'm getting off topic. Shame on me.

We all have to look at the bigger picture.

Autoimmune thyroid destruction was labeled as Hashimoto by the guy that discovered the raised antibodies doing there thing.

So we always say the cause of Hashimoto is the raised antibodies. Everyone has some, but below the 'threshold' or lab test limit.

What has caused the RAISED antibodies is the problem. When this can repeatedly be stopped in all with Hashimotos, THEN we will have the answer. Just watching them sway up and down by eating tree bark or whatever the latest craze might be is not proof, as antibodies sway naturally too.

The reason so many autoimmune conditions tag along in threes is possibly because there is a much bigger picture that modern science has not yet proven about autoimmune.Think about it. How come there are so many symptoms and degrees of severity with Hoshimoto?

So its very possibly that those of us with certain continuing symptoms thought to be from Hashimoto, might be additional autoimmune issues, and it might all be linked somehow.

I doubt modern Western medicine is even interested in this. Autoimmune conditions make huge profits for big pharma by not finding a cure. Sick people = big money.

Natural medicine might find the cure some day, or some university kid in school? Lets hope.

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798555 tn?1292791151
In your case, you have to many continuing symptoms. What are your lab test like and how did you feel on other thy meds? - most dont start on Erfa, so I assume you tried others. Its best to make a new post for yourself on these issues.
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1139187 tn?1355710247

I doubt modern Western medicine is even interested in this. Autoimmune conditions make huge profits for big pharma by not finding a cure. Sick people = big money. "

True dat.

One of the only Endos i have ever met that i actually respected told me "I can only do what i can do as the science really isn't out there still regarding thyroid disease.  We are still very far away from understanding this disease and I understand your frustration'.    
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I have a question for those of you who switched from Armour to Erfa. Did you have to lower your dose? Although Erfa contains slightly less hormones than Armour, it seems more effective. I used to be on 5 grains of Armour (started taking it in 2010, thus after the reformulation), am currently down to 4 grains of Erfa and considering further lowering the dose.
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798555 tn?1292791151
Reformulated Armours effectivness varies form person to person.

From what I've read Erfa does seem to be the most effective for most people - so it makes sense that it would require a little less than other brands. The difference is how they are absorbed - the fillers used make a difference.
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Yours is one of the highest doses of thyroid med that I have run across.  Not saying that it it too much, understand.  I firmly believe that dosage is irrelevant, that the only thing that matters is the clinical response.  I just wondered if you would please share with us your thyroid test results and their reference ranges.  I think it would be of interest and value for us to see the effects on your test results, knowing that your are feeling well.
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1139187 tn?1355710247
This is an old post but there is a lady on FB who takes 6 grains.  3 in the AM and 3 in the afternoon.   crazy
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2100513 tn?1333476558
RIGHT ON BRUCE!!!!! You just keep right on fighting for your life....I lost my life to the "ringing in the ears and every other HYPO symptom in full force a year and a half ago, after suffering with undiagnosed Hypothyroidism for 25 yrs...(I'm now 33 yrs old) I have been to dozens of QUACKS who worship the Synthroid DEVIL and now have to self medicate because I go to bed every night hoping I will not wake up tomorrow...(I am on synthroid/T3 combo with NO relief of symptoms). I am having a blood test done tomorrow and will start my own unprescribed meds since I cannot get any doc to give me a script for desiccated thyroid...I don't want to hear how "that's so dangerous", I HAVE NOTHING LEFT TO LOSE, this disease has already taken EVERYTHING FROM ME!!!! So thank you Bruce, I feel a little less alone with my desperation...Also, can you tell me more about the " Less agitated"? That really got my attention, I am filled w/rage (apparently my adrenal issues)....
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1139187 tn?1355710247
LOL


first of all,  don't believe everything you read on all those "other sites"   where the preachers try to find other things and little secrets to charge you for to understand....  

I had horrible horrible anxiety.   After about 2 months on armour erfra this went away.  I feel more relaxed now.  Still feel horrible but not as bad.

I added in some t4  and was taking it for 2 weeks.  never felt worse in my life.  Today the dr.'s took me off the synthroid addition (i didnt take it today) and my body is P I S S E D.  The ringing is nuts today but i don't have that awful synthroid headache i had for 2 weeks...  
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2100513 tn?1333476558
I ordered Erfa from a "PLACE" on the net and I am so excited, even if it doesn't help, or change my symptoms, I am just relieved to finally get to try anything but the same old synthroid/t3 combo...it will take like 3 weeks to get because it is overseas but whats 3 weeks after wasting a year and a half on synthroid/T3....I also ordered a hc pill for adrenal fatigue....I too have life halting anxiety and anger....Erfa helped make yours better??? Please explain
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1139187 tn?1355710247
i have taken HC as well.  that helped me with the motion sickness.   Question - did you need a script for the erfa?  If Not will you email me privately please i have a buddy who is having a hard time getting it.

it probably won't take 3 weeks.  If its from canada, sometimes its faster than US mail.   Im not a doctor but be very careful with the HC.  there is a chance you only need a tiny bit and a lot of those WHACK BOARDS like STTM will tell you its okay to take up to .25 HC with no hassles, i do not think this is a good idea.   I am speaking first hand.  
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1139187 tn?1355710247
I just want to say something as an observation.   I know I am still hypo, But to ensure that i get accurate test results, I am going to wait until april 24  which is 5 weeks after they tried to add t4 into my system to make sure i am getting an accurate reading.

Someone suggested that I try not multi dosing so now I take my entire 2.5 grains in the morning.  I feel much better doing this.   The ears ring but not as bad, i am able to wind down a little more at night, overall i feel much better.

So my point is - for me single dosing seems to work much better than multi dosing.
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1139187 tn?1355710247
Question - for those on erfa - I just saw they only make a 30,60, and 125 MG pill.  I was hoping they made a 2 or 3 grain pill so I'm not having to take so many.  For those of you on 3 grains - are you taking 3 pills at a time or am i missing something.

Im currently on 2.5 grains but having a feeling i will be bumped to 3 grains.  SO assuming i will take 3 @ 60 mg ?   (there is no 120 mg pill ?)

I think its very odd that they make it 30, 60 and 125 (not 120)?
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How the ear ringing? Is it getting better with erfa compared to other medications for Hypo?
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1139187 tn?1355710247
still *****.   no help just yet...   but my labs were way off.  I cant complain until i have perfect labs (or near perfect) and its still there. ..
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535882 tn?1396580285
I thought you were fabulous??? what happened??
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What were your labs and what are you aiming for?
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535882 tn?1396580285
you were close what happened????
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1139187 tn?1355710247
well kevin,  I had my thyroid out Feb 16.   Was chugging along on my 2 grains or whatever i was taking and doing just dandy.  30 days after the surgery we went to vacation in hawaii.  I started to feel pretty lousy and it just kept getting worse.   I came back home and my labs were a little off.  TSH was like 5.27 or something and the FT4 was low  and the FT3 was low mid.  So they bumped me a little bit.    Then i kept getting worse and got to a point where i was the worst I've ever felt.  So i went back in 6 weeks after my increase and my labs were

tsh 24.9
ft4 was .5   ranges 1.3 to 2.8
and the ft3  was 2.8      2.3 - 3.4

so that is why i felt so bad.  I must of crashed after surgery.   Im now at 3 grains, i think I'm on like day 4, feeling better than above but still way far away from acceptable.   I think when all is said and done ill probably be on 4 grains, at least 3.5 easily.   ear ringing all that crap.

Now my problem is i cant breathe at night.  Went and saw a specialist and he thinks my windpipe is out of sorts from the TT so I'm snoring now.   loud breathing, sound like a sucker fish at night LOL

I think I'm on a lot of meds for my size.  I'm 5'10 174.  she wants to spot check me in 3 weeks and retest in 6.  Joy!
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535882 tn?1396580285
that's crazy your numbers were close to perfect last time!
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535882 tn?1396580285
that's seem crazy high dose for a little person. . do you have diverticulitis? or a gastric problem.   have you had an digestive evaluation done? vitamin absorption?  
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535882 tn?1396580285
you might need a heidelberg gastric analysis. see why you not absorbing that thyroid. med. ?? figure it out.
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1139187 tn?1355710247
what the hell is that?    My pharmacist told me she has one lady on 4 grains.  Im feeling much better now.   Last 3 days I've felt much better.   closest I've felt to normal in 3 years.

HAIL ERFA!  KING OF ALL HORMONES!      HAIL HAIL ERFA!!!!
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Bruce - are you still good with ERFA?
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535882 tn?1396580285
Terrific!!!!!!!!!!!!!
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Please update your progress with Erfa? Is your ear ringing any better?
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1139187 tn?1355710247
its still there.  a drop better.  I had some pretty shocking test results this week so I'm in a state of confusion....

the ear ringing is better, or I'm more used to it.

By the way,   ERFA may have a canadian web site, but mine came from germany.
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798555 tn?1292791151
Bruce, it might have been SHIPPED from Germany but ERFA is Canadian and sold in many places exept the USA.

They give me a choice from where its shipped. I always ask for shipping from a Canada pharmacy, its closest to me and quicker.
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Hi Gimel,

I'm so sorry I forgot all about this thread, but hopefully you can still my answer helpful. These were my latest labs:

TSH <0.01
FT4 1.1 (ref 0.7-1.5)
FT3 4.2 (ref 1.7-3.7)

So slightly out-of-range FT3 levels, but feel great and would not want to lower my dosage.

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1139187 tn?1355710247
NO   i am on naturethroid now.  year #2.    Erfa didnt do well for me thought i am not against trying it again one day.  
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