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)?
Remember the re-surfaces thread a short time ago specifically about thyroid med dose / multi doses / time of day? The Erfa brand would for no reason be any different as to how / when to ingest it. With the two others I know on Erfa, we all take it multiple times per day, as do most people on some kind of T3 or combo med.
This topic of when seems re-surface quite often. It all comes down to T3 (or T3 in a combo med) lasts a short period of time in the body, 4-5 hours. So when you should take it and what it will do is pretty simple given its short life.
Are you taking about the Erfa web page itself? and it was against multi dosing? Makes little common sense for most people. Maybe the author was drinking too much Molson during editing.
yes it was that one guy (the erfa guy who answers all the faq) saying over and over "the way it was designed was only tested for a one dose regimen" and then the person would ask the question differently, and he would say the same thing over and over.
You mentioned that your FT4 was nicer on this than it was on NT. DO you know if Erfa has more T4 in it per dose than the other NTH>?
I think my ear ringing is from too much t3. I honestly do. I need more t4. I need a smaller dose of meds to achieve a higher t4 level. I think this will be my answer if my theory is correct. Less meds, better t4, lower t3.
Isn't ERFA a Canadian drug? Can we in the USA just order it online? How does a prescription work from an American Dr? I assume you still need a prescription in order to get ERFA online. Is it legal to get meds across country boundary's
bruce u said u worked up 2.75 on nt then backed down to 2.0 on nt now your on 1.25 efra. wtf?? and it wasn't a full 5 months you changed doses at 2 weeks and 3 weeks, what ARE YOU DOING TO YOURSELF, CAN'T BE THE SAME DOCTOR GIVING YOU THESE MEDS. STOP BEFORE YOU HURT YOURSELF.
i went in last week. My ft3 was at the top only 3 weeks into the meds. My ft4 was at the bottom. Then it got worse every day. I became more and more hyper. I had heart palps, diarrhea, shaky hands, i was in bed. The ear ringing was so bad I thought it was the end of the road for me.
Then she cut me back for a week to 2.0 and i went and saw her again today. we talked about options. She wanted me to switch to plain armour i told her i didn't really feel comfortable with that, have not heard good things lately about it. So she said "what about erfa" and we talked and she told me to start. So i had a bottle from a year ago in my closet i never took. She wants me to take it for 6 weeks and re-test but doesn't want me to start off as high as i was on with the NT. wants me to stay on this dose til everything evens out and then retests. I have not been on but 1 thyroid hormone in the last year. That was nature throid. I did not try anything else prior to that except when all this crap started.
You want to switch to NP acella. Why would you switch if you are doing good?
why don't you take a low dose of ERFA and then add in a dose of T4 meds?
This is totally permissable and will give your more leeway for independently adjusting FT3 and FT4.
Ie. I take 310 mcg of ERFA plus 125 mcg of T4 only (thyroxine). My FT3 and FT4 are both close to / but within top of range and I feel great (Ignore the dose info - I for some reason need a phenomenally high dose of meds to get my levels where they should be - compounded by being pregnant!).
yes you can. a prescription for Armour can be used for the Canadian Erfa Thyroid. I ordered three bottles a month ago. Received the meds in the mail 2 weeks later, no problems at all. Google canada drugs online
i just started Erfa yesterday as well. starting with 1 grain (60mg). i took it yesterday morning, felt like s*** by 2 pm and completely crashed. thought i was going to fall asleep at work. came home and fell asleep before 9pm, this morning i couldn't get out of bed... no heart palps, no tremors, no hyper symptoms. in fact i was feeling like my hypo symptoms were 10 times worse.
so this morning i decided to try 2 grains just to see how i would react, and same thing - 2pm I'm falling asleep, feel foggy and heavy and like i'm drugged. today, with the 2 grain dose i feel like my throat is swollen, like i can't swallow.
i don't get it... again, no hyper symptoms. what's the deal? i mean shouldn't i be feeling hyper, or have the symptoms of a higher level of t4, t3 in my system? what's in these pills? I was expecting to feel better and figured that i would know when the dose is high because i would feel hyper. i feel worse than ever.
let me know how you're doing over the next few days with Erfa, i'd love to hear that you're doing better...
feeling a little bit on the normal side today. Ringing is down and so is the vibrating in my head. Its still there, just not as bad. I do feel a little beat down, but i can handle this any day over what i was dealing with before. I am also on a smaller dose. Was on 2.75 of NT, but I'm only on 1.25 Erfa, as my dr. wanted to start small and build up.
Heres what i don't understand about all this. My ears ring horribly bad. I need thyroid but when i take thyroid, the ears ring even worse. Its like a buzzing. Its like damned if i do, damned if i don't. Wondering if the thyroid being removed would help regulate all this mess at this point.
i'd check all my medications including ofc drugs such as ibuprofen, alot of these can cause tinnitus. secondly i'd go to a good chiropractor get adjusted on a regular basis you could have some nerve interference that is aggravating the ringing in your ears. third i would conside going to osteopathic doctor and doing intravenous chelation for heavy metal in your system that also could be causing ringing in the ears and some say your thyroid problems as well. none of these can hurt you and might help! check it out!
can you please tell me either here or by PM where you get your Erfa? I got my new prescription today and went to go fill it on the Erfa web site. They want $45 for shipping. I recall seeing it somewhere else more reasonable? She wrote me for 300 x 30 mg. A the end of the day i will be taking 1.25 grains for now. Thank you
With all that I complain about to you and others about "not" having a thyroid, why would you wanna go and do that without weighing all of your options. Not having a thyroid is no joke, especially when med's aren't cutting it and most docs are against anything but T4 meds. It effects your entire body and it's organs. Don't Do It, if you can help it.
great thanks. i just paid $45 for shipping to erfa because i was getting worried. But please pm me because I'm going to blow through these rather quickly. I ordered 300 pills. So I'm taking 2.5 a day and I'm sure ill be up to 4 in no time. I once said , i would write a check for $10k to anyone who could make me feel better, so i guess i can't complain about $45 shipping?
Please tell me how this happens --- Jan 11 - "I have not been on but 1 thyroid hormone in the last year." In the last year, you've been on just about every thyroid med known to man...... including synthroid, generic levo, Tirosint, cytomel -- need I go on?? Have you completely lost track of the past year?
Jan 13 "I'm on day 2 of erfa."; Jan 16 "Im on day 6 now of erfa"........ if you were on day 2 on the 13th, that means you started on the 12th, so if I learned to count right, by the 16th, you would only have been on it for 5 days, not 6. Insignificant? No, it's not - a day can make a big difference.
I agree with Kevin -- stop before you hurt yourself......... At this point, I don't care if I sound like a broken record -- you have to give the meds time to work, before switching/increasing/decreasing....... if your doctor is advocating all these med changes, she's being totally irresponsible.
I went 6 months not on anything at all. Then i started Naturethroid. Was on it for roughly 5 months. Never felt worse in my entire life. In fact, i felt better with a TSH of 24 and low ft3 then when my labs were close to range on NT. SO I've switched, I'm sticking. end of story.
so far so good on the erfa. went shopping today and actually picked out my own clothes. Felt sort of normal. The ringing isn't as bad on this stuff. Not as shaky. I slept better last night, i noticed i started to dream again. Don't have the agitation
It looks different. NP looks like its made in a lab, has no smell to it, looks like it may have a casing or something.
erfa smells like an old sock. has a sweet sort of taste to it.
Im not on as much erfa as i was NT. My ears still light up on this stuff, but i do get a longer period of "normality" during the day on this.
I do crash and burn pretty hard at the end of the day, usually about 7 pm. IM going to stick with for 6 weeks, maybe 7 week this time before i test. If i have to add a dose, id like to maybe add a dose at 5pm. Maybe 1/4 grain or something to help carry me through the night. Is this too late?
So you say your going to stick to 6 weeks and then say your thinking of changing your dose again in the same sentence. It's one thing if someone has a clue as to what they are doing, Its obvious your lacking in this area.
How many times must you repeat this pattern of madness?
And then ask people for the same advice over and over like a broken record, for years?
Its been years of not listening, yet you continue to PM myself and others on what to do. We told you what to do. You don't listen, or possibly this is all a made up game? I'm not totally convinced that your real anymore, since no one would repeatedly ask for the same advice and then continually ignore it, unless it's was a game to them.
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?>
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?
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. :)
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.
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
spinal tap/ Blood patch
2 sonograms thyroid no nodules
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
Infectious disease consultation
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
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.!
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.
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....
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.
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?
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.
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.
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.
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.
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.
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. "
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'.
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.
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.
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.
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)....
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...
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
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.
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.
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)?
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
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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