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1139187 tn?1355706647

Things I learned today from my new endocronologist

I learned a couple things I did not know about until today.  I saw my new endocronologist after waiting two months.  He upped my dose from .015  to .050.

He told me:

If you are going to take thyroid meds (t4) you should take SYNTHROID because if you are taking generic there is a good chance that every time you get it filled it may be a little different or from a different manufacturer.

If you are going from lets say .015  to .050 it is difficult at a small level to over medicate because your thyroid will just back off a little from production to compensate for it.

He wants me to take .050 for five weeks to see if this makes my symptoms go away.  If my TSH gets below 2.0 and I still have the symptoms, there is something else causing me problems.

He told me that synthroid is the only drug that is EXACTLY like what is produced in the human body.  It doesnt matter if its from the pill or your thyroid, as long as you get it from somewhere.

bruce
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649848 tn?1534633700
COMMUNITY LEADER
This is a really old thread and Bruce hasn't posted in a long time; he may or may not respond.  If Synthroid works best for you, that's what you should take.  It didn't work well for me, but generics worked fine.  They have the exact same active ingredient as Synthroid.  The only difference is the fillers/binders and dyes in the pills.  My TSH at diagnosis was 55+.
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Avatar universal
I was diagnosed with Hashimotos 17 years ago. My elderly Endo said anyone with it should only take the Synthroid because it acts the same as the things in ur thyroid. He was the only doctor that took everything I said seriously. By the time they caught my Hashimotos, my tsh was 13.7 ! I think everyone is different but I truly believe in using the brand name.
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Avatar universal
Seriously?  Wow.  Gall bladder problems or stones?  Curious.

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1139187 tn?1355706647
Hey I forgot to mention one thing.  When I started having all my symptoms for 6 months straight and no one could figure out what was wrong with me, I ended up having my gallbladder out because I had a lot of pain there from the hypothyroidism.  He said that gallbladder problems are a common thing with hashis.  Anyone else have a problem with this?
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929504 tn?1332585934
I switched from the generic to Synthroid and my insurance does cover it..however if the doc does not write (DAW) on the prescription slip, the ins. company will give the generic. I believe that Synthroid has shown a difference since i've started taking it, however...i am only 4mos post surgery..so my levels are still stabilizing.
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519736 tn?1253986826
That's what I said in my first post :) Take care!
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1139187 tn?1355706647
IN my opinion (please read that twice before continuing) the reason why Doctors tell you to only take synthroid is because it is always the exact thing over and over and over.  With generics you run the chance of having a slight difference.  My Generic cost me $1.94.  The synthroid on my insurance was about $19.  I have spent almost $4,000 in deductibles over the last 2 years trying to figure out what is wrong with me before finally getting disagnosed with hashimotos.  I will pay an extra $17 a month for the synthroid if it even remotely has a chance of making me feel even the smallest amount of feeling better.

I talked to an good friend pharmacist yesterday after we all had this conversation. He told me that if you want to stick with the generics, that is fine too but you have to make sure that you request the same manufacturer which by law is printed on the bottle.

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1218579 tn?1267638816
Wow, lots of post regarding this.  I Just want to say to Bruce that I totally understand wanting to listen to your endo.  Its really hard to treat thryoid problems and everyone is different.  From my experience all dr's, endos or not seem to have different opinioins, theories or recomendations for treatment.  Most patients want to trust that what their dr is telling them is correct (although from experience this is not always true).  Having this forum has been helpful for me often when im researching information after me not agreeing with a dr.  I dont think any of the dr's or treatments are wrong just different approches that dont work the same for everyone.  Sounds like Bruce was just sharing what he learnend from his endo's approach.  That approach might not be right for all but may suite some.  As the patient I totally understand how confusing and frustrating it all can be.  I hope we can all continue to support one another.
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519736 tn?1253986826
i just want to feel better
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649848 tn?1534633700
COMMUNITY LEADER
I'm with goolarra -- that was well said - I was once a newbie and got "thumped" a time or 2 as well - matter of fact, I still get "thumped" now and then........

I'm one of those that needs both T4 and T3 med and I'm lucky enough to have an endo that will give me both - and yes, he gave me cytomel on my "first" visit, because I took it on myself to find a lab that would test without a doctor's order since my "former" pcp would not test FT3.  

I was able to take that lab report (TSH, FT4, FT3) to my first visit with my endo and show him that my FT4 was higher, but FT3 very low range.  I'm also lucky that he doesn't place much credence on the TSH because mine was "under" the basement at that time and I was still hypo.  He took one look at my FT3 level compared to FT4 and handed me a script for cytomel.

The doctor that diagnosed me told me to "never let anyone give you anything but synthroid" --- synthroid did not make me well; partially because the doctor was basing my dose on TSH and partially because apparently, I don't respond well to synthroid and partially because I wasn't properly converting the T4 med to the usable T3.  

My endo told me that there was really no difference between synthroid and generic levo and my pharmacist confirmed that -- I'd have to disagree with all of them because once I started on the generic levo, I felt better even without a dosage increase.  Then add the cytomel and things improved immensely.  

I'm a firm believer that no 2 people are alike and what works for me might not work for you, but I'll pass along suggestions based on what I've tried.  

I've also learned that TSH levels don't cause or alleviate your symptoms -- what causes/alleviates your symptoms is really the level of FT3.  For some, TSH "reflects" those levels, but for some of us TSH is useless.  My latest TSH was < 0.03, but my FT3 and FT4 levels were perfect and I feel better now than I've felt for years.

I'm currently on levothyroxine (T4) - generic synthroid AND liothyronine (T3) - generic cytomel.  

We are all so different that we can't make "blanket" statements.  I have Hashimoto's/hypothyroidism, pernicious anemia, low zinc levels, osteopenia, etc but there's no way I can say everyone or even "most" Hashi/hypos have these things.  This is what I have and my experience might help you or it might not.........



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519736 tn?1253986826
Well said! I agree! Nobody here wants to pound on you, Bruce.
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Avatar universal
I think that's precisely the point, Bruce...this is supposed to be educational and supportive.  Once again, please define "support".  Is support yeah-yeahing things we know from experience are questionable?  Is it even refraining from commenting unless we agree?  That's not my idea of support.  That's my idea of totally not caring.

We've all BEEN in your shoes...we were all newbies once.  I thought you were no longer the newbie that had to be treated with kid gloves.  I got my fair share of sometimes not-so-gentle disagreement when I was starting out.  I learned a lot from it.  If no one had questioned what I said, I'd still be where I was two years ago.  

Cut us some slack, too.  We all have our "hot" buttons.  We may not say everything as graciously as it might be said.  We hear the same complaints over and over mostly generated by incompetant doctors who ignore symptoms, treat based on TSH alone, won't test FT3, won't use T3 meds, and tell their patients it's "no longer thyroid related" and send them home to be miserably undertreated with instructions to "eat less, exercise more, oh, and by the way, how about some anti-depressants?".  WE get to a point, where we just say, oh, no, not again.

We're people, too, and all dealing with our own problems, time constraints, etc.  Don't be so quick to take offense...do you really think we're here because we're not trying in our all-too-human way to help???



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519736 tn?1253986826
I believe I clarified myself in my 2nd post. If you read what i said as a slam to bruce, you misread me. It's true, there are many here that are new and confused. I'm not new to thyroid desease, but I stll haven't gotten the help I need. Some may also only read what bruces Endo had to say, and go no further and not seek the help they truly need...we certainly don't want that. There are a number of choices we all need to be aware of...when we go from bad dr. to bad dr., and yes we've ALL been there..as i stated in my first post, and we're told the same thing and given the same synthetic T4.....I AM IN YOUR SHOES BRUCE!!!  I am still hypo! I had to speak up and disagree with what you wrote about your Endo...he's also wrong about only using T4...many hypthyroid people start out on NDT and do very well. I meant no offense on a personal basis. As in my 1st post , I hope you see improvement with what you're doing. I certainly take offense at being told that I'm impolite....excuse me?? My post was in no way rude or sarcastic.
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1139187 tn?1355706647
Id like to apologize for my bad choice of words.  But you guys have to remember one thing- most people that come to these boards, come for help.  They are new, they dont know a whole lot, and this crazy disease is a mystery to them.  Cut them some slack.  Show them the ropes. Put yourself in their shoes.  This is suppose to be an educational, sometimes fun "support" group.  

Id also like to point out that since ive been on this board that Tamra has been a peer coach to me.  I have researched probably every post she has made so that I can better understand what im going through from a neutral, fact oriented, non emotional poster.

Thanks Tamra!
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Avatar universal
My comment was NOT directed at Bruce in any way...it was directed at his endo who made the comment.  Yes, sarcasm it was, but toward the endo, not Bruce.  I did note his correction to include all levo, not just Synthroid, which is exactly what I mean by disagreeing to give the poster the opportunity to clarify what he meant...which Bruce did very nicely (thanks, Bruce).
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Avatar universal
Thelma, Bruce retracted the word 'Synthroid' in another post. His thyroid levels are still low and he's obviously dealing with brain fog. Totally understandable. I make my living as a writer, and yet I've typed some nonsensical things on this forum during my hypo dumps.

I read this comment as a slam to Bruce. "but please, parroting Endo's who say Synthroid is the ONLY thing to take is just wrong."

I'm sure you didn't mean it to sound like a slam, but to someone who is dealing with hypo hormonal issues (believe me, we've all been there) little jibes like that can be taken as huge insults. I'm also sure that, like me, you're fed up with the incompetence of your previous endos, and your anger is directed at them, not Bruce.

Goolara's comment:  

"...synthroid is the only drug that is EXACTLY like what is produced in the human body."  I don't think so...'    

can be interpreted as sarcasm directed toward Bruce.  

Tempers can easily flare when we read thyroid advice we believe is false. Sarcasm can be felt just in the word choice of the poster. At times I'm sure I've sounded offensive on this forum, and I've felt picked on as well. So if I've offended anyone, I apologize. Bruce came here to tell us what he's learned from his endo. If we disagree with his endo, we can do so politely, so that Bruce will not be discouraged to post again on this forum.  


Thanks,
:) Tamra

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Avatar universal
Let me add that I'm doing well on T4-only meds, too, and, like Deb, I'll most likely never be on T3 meds due to a heart arrhythmia.

I also agree that IF (the big. fat IF) T4-only meds work for you, then T4-only is arguably the easiest route to take (and most stable in view of this past year's shortages of dessicated).  I think that's why it's considered the "therapy of choice", and my recommendation is always to give it an adequate try first.

I don't think there's a "majority" that needs T3.  Remember, we don't hear from the textbook cases on this forum.  We're all here because we didn't react as most people do and don't feel well on "standard" therapy (by and large).  I still think the vast majority of hypos take their daily pill, end of story.  Those of us that don't fit the mold are all-too-often deserted by the medical establishment and left to figure things out on our own (or with the help of forums like this).

If anything I said made anyone feel "pounded on" or "slammed", I sincerely apologize as this was certainly not my intention.  I feel that knowledge is indeed power.  When I see somthing that I know is either blatantly wrong or, at the very least, has a significanTly supported opposing view, I feel an obligation to present another opinion.  Yes, "support" is important, but are we really "supporting" when we ignore what we see as wrong and simply "go along" to be "supportive".  It's a little like not telling your best friend that her fiance' is having an affair so as not to disturb the wedding.

The "climate" on the forum has changed a lot in the time I've been on.  We used to have some quite lively disagreements, and it got hot at times.  But, I think it was healthy...posters got to see that there was more than one side to almost every issue.  Now, I often see people being "politically correct", not wanting to offend or disagree.  I don't like it, and let me say, that I don't mind being disagreed with or corrected if I say something blatantly wrong.  I can either disagree back or learn something.  It's how I learned a lot of what I know from the forum.  We're all writing comments, without the benefit of seeing the person we're talking to or hearing tone, so sometimes a little disagreement helps clarify what may not have come across as exactly what I meant in the written word.

I think that we do have to be careful to tailor our responses to the individual.  Do I write the same things to people I have written to before and know their situation as I do to total newbies.  Of course not.  We're really going to get bogged down if we have to write everything as though the poster didn't know what TSH was.



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519736 tn?1253986826
Hmm, I re-read all above posts..I certainly didn't respond as a slam...I merely pointed out that it's wrong for and Endo, or any Doc to say , Synthroid is the only thing to take for hypothyroid!! I didn't see anybody get slammed for saying they feel better on synthetic T4 or Synthroid??? Where was it said that everyone needs T3? The original poster didn't say he 'actually' feels good.....I don't think any of the responses were intended to slam HIM down at all.  I say it as I see it too :)
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Avatar universal
I have read the above postings and would like to add my opinion......

Bruce I dont know much about your symptoms or conditions but I do know one thing.....
We have all been on the road that you are on...had different opinions from different Docs/Endos etc and it is good to see that you are happy with this one.
If Synthroid works for you ,,,then great. Myself I am on a T4 med only and it works great for me.

Its disheartening to see someones posting there they 'actually' feel good , only to be slammed down (sorry but I say it as I see it).
In regards to the TSH...I cant handle mine under 2.3 and feel great with it at this level.
EVERYONE is different and thats what some people seem to forget.

Bruce, I hope you continue on your journey to wellness and I really hope it works.
I am one that is on T4 only and will never take T3 because of heart issues but I still do good on T4 alone.
Usually no Doc will prescribe T3 until you have gone basically 12 months on T4 alone until T3 is introduced.
Not everyone needs T3 meds, regardless of the majority that do.

I wish you well Bruce on your journey and hope that you will continue to be optimistic because the secret to wellness most of the time is a positive attitude which you have now got.

Keep us posted as to how you are going :)
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929504 tn?1332585934
Bruce, i'm with you. My endo also told me she won't even test the Free T3 unless my T4 levels do not improve, let alone prescribe any T3 meds. So far....(4mos post TT), I am coming along ok besides the added issues that I truly believe came along with the TT. I started on Levo 50mcg and increased to 75mcg , however switched to the non generice brand Synthroid because i complained of exptreme fatigue. I do notice a difference as far as the exhaustion goes.

It's a good thing that your Endo is on top of your status and will do what he feels is appropriate to make you feel better.
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519736 tn?1253986826
Truth: if you hop around from pharmacy to pharmacy, as some people have to do, there is a chance you'll get a different generic brand of T4. Synthroid, is Synthroid, no matter where you get it. This is why patients get confused about generics. Plus the Doc behind the advice to take ONLY Synthroid, may have their own "personal" reasons to prescribe Synthroid! And just because the Doc is an Endo, doesn't mean he/she is the best choice for treating your thyroid condition. My experience has been the opposite, in fact every Doc I've seen, including the one that found my hashi/hypo has left me undertreated, and on nothing but synthetic T4. I NEED T3.I know this from both blood work and symptoms. 4 years is long enough to know if T4 alone works for me. It has been next to impossible for me to get my free's payed attention to...Endo didn't check FT3, and didn't care how i felt, reluctantly upped my T4 last summer when my TSH was over 4.0..it's over that again.....both my free's are on the low end! I asked the last idiot i saw for thyroid, to prescribe 5mcg T3. he had no idea what i was talking about. I have another appnt with another new doc, but not until early June. Bruce, your Endo is right about the fact that, Synthroid is Synthroid. You've obviously had some trouble getting the right stuff..3 Endo's!! People need to do whatever is best for THEM, if this is what works for you , that's great...but please, parroting Endo's who say Synthroid is the ONLY thing to take is just wrong. Why do you feel that a newcomer to these boards would be,scared? These are people who've been through the "wringer" with thyroid issues, and crappy Docs, myself included. The information here has been a huge help to me....HA, I wish the Docs I've seen had read these boards. I hope you feel better following the Endo's advice. Please let us know how you feel in 5 weeks on Synthroid...i truly hope you feel better...my post may sound anti-synthroid, but i'm not, not if it works for you. Take care
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1139187 tn?1355706647
Ok first of all.  Let me say something.  Seriously...  How many endos are going to prescribe both T3 and T4 drugs on the first visit?  Ive seen the top 3 endos in Dallas and NONE of them said they would do it until I at least tried the common treatment method.

Secondly,  I will be happy to supply anyone on this board with the findings of the top pharmacists in america that say you should always try conventional treatment before trying armour or other supplemental treatments as in most cases the T4 treatment does the trick.

In my "opinion" taking T4 alone MAY work for the vast majority.  Most people (such as myself before finding this board) dont even know what the hell armour is or any of the other "t" treatments.

I am only reporting MY results.  Obviously I still am far away from cured.  My ears still ring, and I still shake from time to time.

Also id like to say that if i was a newcumber to this board, id be scared as hell after reading this post.

Bruce
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Avatar universal
Well, it's good that your endo will eventually look into prescribing you some T3 meds if needed. Some docs still get hung up on TSH, a pituitary hormone, but as long as he is willing to treat you until you are symptom free, then that's what matters most.

Bruce, I've known you for a while, and you've been through a lot of crazy cycles, hyper and hypo symptoms all mixed together. You are an enigma. Your endocrine system is really out of wack. Can't a guy get a break????

I sure hope this endo heads you in the right direction and tests your adrenals using the 24 hour saliva, not urine or blood like the other docs.

As far as which drug to take, well, that depends on your body. You've had some issues with Synthroid in the past, or maybe  your body was playing tricks on you again. This endo will hopefully keep an open mind to trying a different hormone if Synthroid doesn't work. I take Synthroid and Cytomel. They work great for me. My aunt is on Armour. She's doing well on her natural hormone. The key is that we just need to find what works best for our bodies.

I do agree with him on the hazards of switching if the hormone is working well for you. My mom had a heck of a time when her pharmacy switched her from Synthroid to some generic Levoxyl without her knowledge.

Best of luck to you...
:) Tamra
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Avatar universal
Thanks, I guess.  LOL

Anyway,  I'm glad to now be able to put your Endo's name in my "prospect" file, rather than the "suspect" file.

Best to you.
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