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Avatar universal

Why is majority anti- Synthroid here ?

Prior to my surgery Feb 2012, I read nothing but post after post, how horrible Syntroid is, and continue to do so.  

Reading those posts terrified me !!!  I gave up before even trying, all my hospital carries is Synthroid.  I had no choice but to take it, and to my surprise, I've done well on it.  Meds work differently for everyone.  I've been on Synthroid and doing just fine.  I even ask'd if anyone taking Synthroid could post something positive about thier experiences on the med prior to surgery, no one replied or maybe no one likes me here, but any case.  

I'm also diabetic, Metformin or Glyburide did not work well with my system, Metformin caused me to have pancreatitis, I ended up in the hosptial.  Glipizide is working fantastic, but I'm not going to terrify someone from trying either meds.  My mom has been on Metformin 35 yrs, never had a problem.  Didn't work for me, but works for her.    

It's like, assistance at this forum is one way or no way at all.  Sometimes all one needs is a sympathetic ear.  A person asks a question and get bashed for taking Synthroid, or not posting labs.  It's like members are here to promote diagnosis & medications.  Reason I rarely post.    

Not everyone can obtain specific meds, for financial reasons, health insurance reasons, some hospitals such as VA medical center, military hosptials, does not carry many brands of medication.

Someone asks, if anyone has ever been constipated on Synthroid?  No one answer's the question, only suggest to take natural hormone, they don't have that problem, well I've been on Synthroid and haven't had any constipation issues.  Person could be going hypo.  Changing meds, doesn't alway's resolve everything.  People can take natural meds and have issues.  

I just feel forum members, should try to relax, address members questions, opposed to promoting all the time.  Thanx for reading, just my 2 cents.  
Best Answer
649848 tn?1534633700
COMMUNITY LEADER
Unfortunately, the only feedback I can control is my own. Actual thyroid isn't such a mystery; what I find to be the mystery is that doctor are willing to keep so many patients ill, simply because they are stuck on the TSH test.  

Keeping in mind that some symptoms can "cross over" between hyper and hypo, your symptoms prior to surgery were pretty typical of hypo.  

You had your FT3 and FT4 levels posted in another thread that I responded to this morning.  Levels are:

TSH .99 (.34 - 5.6)
FT3  2.6 (2.5 - 3.9)
FT4  9.2 (.6 - 1.12) only this should be 0.92 per your response to my question.  

That said, your FT4 is near mid range, which is pretty close to our rule of thumb.  Your FT3, on the other hand is quite low in it's range, and rule of thumb there is for it to be in the upper 1/3, though some don't function well, that high......  Rule of thumb is only that -- doesn't mean that everyone will feel well with those levels, though most/many do.

It appears that you aren't converting the FT4 to FT3 properly, so raising synthroid  might not help you a lot; it will raise FT4, but not necessarily FT3, since you probably aren't converting.  If you think you do better on lower FT3, you might want to think about a very low dose of T3 med; enough to bring you up to alleviate the cold symptoms (if that's what causes them), but not enough to send you into the upper levels, which could make you feel hyper.

Another option is selenium........ studies have shown that selenium can help in the conversion of FT4 to FT3.  I find that when I take it, my FT3 levels are higher than when I don't take it. I take 200 mcg/day.

Also, keep in mind that even those of us who consider ourselves "well" can have periods of feeling chilled/cold...... I can't sit down to watch TV in the evening, without my special throw; plus I tend to get chilled in air conditioning, even when it's 95+ degrees outside - all depends on the air flow.  

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Avatar universal
Hi, I agree physicians rarely seek alternative options.  Wonderful med combo is working for you, wishing you continued success :)

Truly sad any person has to use internet, for medical assistance.  Thanks for feedback.    
Helpful - 0
798555 tn?1292787551
Without reading all these in detail, here's my comment:

I dont believe we are all anti-Synthroid. But when someone is on synthroid at correct levels and has tried different levels with labs to show, but still has symptoms - then its time to change. And rarely do Drs want to change.

People dont generally go on medical forums if all is well, why would they. So it just happenns that here on the med help thyroid forum, most with questions dont feel well, and quite a few are on T4 only meds. I'd guess 80% of people with hypothroid that take T4 meds feel great, and dont come here. The other 20% still have symptoms and need more T4 or supplimental T3 to make symptoms go away.

I was one of those that can hardly function on only T4, got worse every year. As a past title holding endurance athlete (till I was 37), I dont give up. But still, T4 could not relieve my symtoms. I was in missery during my last T4 years. Adding T3 in '09 was a miracle and natural T3 even though its ratio is higher with the T4 in natural thyroid med, my body prefers natural thyroid. I realize most do not need this.

Helpful - 0
Avatar universal
Let me post my latest labs so you can see just how "not the same" we all are:

TSH  18.9  (0.3-4.5)
FT4  0.68   (0.71-1.76)
FT3  2.5  (1.8-4.2)

When I saw my endo after these labs, I told him that even “I” think I ought to be hypo as hell, but I’m not.  I don’t have the first hypo symptom, and, believe me, I’ve looked for them.

By the way, I do have a pituitary issue, so that number has to be tossed out.  

Most of the people on this forum would be miserable with these labs.  I’ve been told that I’m “unique”, but I don’t believe that.  I think lots of people are comfortable lower in the ranges.  We just don’t hear from them because the “standard” treatment works well for them.  Their doctors adjust their meds until they’re in range, their symptoms go away, and they’re happy with how they feel.  Those people do not participate in forums.  When was the last time you saw anyone post labs like mine and say “I feel great…just checking in to gloat!”?  Obviously, I got here (forum) because of my TSH...it was quite some time before someone recognized that it didn't respond to FT3 and FT4 levels.

"Sometimes I have a tendency to read to much, questioning my own well being, thinking something might be wrong, because my symptoms and levels are different from majority."

I think we all do that (some people minus the reading).  Most of us also have a tendency to ascribe every symptom to thyroid.  I was very hypo before going on meds, and I know what my symptoms were.  In trying to determine if a current symptom is thyroid related, I compare it to how "I" (not anyone else) felt when I knew I was hypo.  That usually settles me down pretty fast!

Yes, it's a journey, and we're all developing the patience of Job.  Do you think he actually had an allegorical thyroid condition?  LOL        

Helpful - 0
Avatar universal
Hi Goolarra, very well written, your post is very comforting/inspirational.  Thanx.  

I believe we can all agree, thyroid disorder takes way longer then we would like, to many factors can change how we feel, including lifestyle, diet, exercise, sleep, additional medications, Etc....  

The most difficult aspect of my entire journey, was to learn patience.  Sometimes I have a tendency to read to much, questioning my own well being, thinking something might be wrong, because my symptoms and levels are different from majority.  

Wishing you well on your journey :)  
Helpful - 0
Avatar universal
II apologize for coming into this thread so late...been away for a few days, but I think it's an important point that you make.

I agree with Barb that I often will not comment on a thread if I think someone has done a good job of answering it.  I hate to be a parrot, too.  I guess maybe a simple “I agree with the previous poster” might be reassuring to the questioner…I’ll bear that in mind.  

Also, I shy away from answering some threads due to lack of personal experience.  Like Barb, I have Hashi's, so I tend to not answer threads regarding hyper or TT unless the person is not getting any responses.  Sometimes hypo is hypo is hypo no matter how you got there, but other times the question is specific to "what happens after a TT" or "what happens after RAI", and I don't feel I have the personal experience to be of much help, except on a "theoretical" basis.

As far as T4 meds are concerned, "I" certainly would defend them.  I've been on Levoxyl for years, and I do just fine on it.  I also feel well very low in the FT3 and FT4 ranges.  Does that make me an aberration?  I think not.  I think many, many people do fine on T4…we don’t hear from them for obvious reasons.

Bear in mind that the "therapy of choice" in most of the world is T4-only meds.  So, most people coming to the forum have already experienced T4-only.  The emphasis on adding a direct source of T3 (Cytomel, desiccated) is that many people need to add T3 to their regimen, and many doctors just won't do it.  

I've always said that if you start reading someone (author, forum member) who touts ANY one-size-fits-all therapy, make sure you also read someone with a different opinion to counterbalance your education.

Another issue is that no one ever has to BEG for T4-only!  The difficulty of getting T3 meds makes it one of the key problems on this forum.

One thing I did discover in my journey, which you might find currently helpful, is that FT3 often takes a while to "catch up" once FT4 levels are appropriate.  Once on a stable Levoxyl dose with stable FT4 levels, my FT3 continued to rise for quite a while with no further change in meds.  Symptom relief can lag both of those.

At some point in time, it might be worth your while to stop increasing T4 and see where your FT3 gets to on its own.

One observation:  Back when I was first on the forum and asking, not answering, the questions, there were often quite lively “discussions” with lots of disagreement and, yes, it did get a bit contentious at times.  Somewhere along the lone, we have all been “encouraged” (nothing overt) to “play nice together”.  I think something has been lost in that process.  

Anyway, thanks for the post.  I think you have some very valid points.  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
If you lived in the right state, I'd think that was my sister you met....... lol

My sister was dx'd not long before me...... they put her on generic levo, overdosed her to the hilt, she lost all the hypo weight (I should be so lucky), they lowered her dose and she's done great, thyroid wise, every since.

Those are the people we never see on a forum like this........ lol
Helpful - 0
1841872 tn?1324666089

I met a lady at a lunch stop while riding one day. We got to talking and I told her about my thyroid problem being that I am Hypo and still not happy with how I feel, the doctors doses, etc. She replied that she too was hypo-thyroid.

Oh good, I thought, we can discuss thyroid issues....I asked her what dose and brand of medication she was taking.
She replied
" Oh, what ever the doctor is giving me..not sure of the brand or dose, I just take it everyday, have been for the past 20 years and i feel fine"

and that was the end of that discussion......

Mia
Helpful - 0
Avatar universal
Hi Barb, very well written.  Thank you.  You have been a tremendous help to all of us.  Like yourself, I stick around to help those in position, I was once in, I lack knowledge in thyroid disorder, but have lot's of personal experiences.  

What I meant by inactive is, lack of feedback.  In addition to what you shared, thyroid disorder is a mystery, it's one wacked system, so I understand sometimes it can be very difficult to assist.

This confused me and surely will confuse you.  Prior to surgery, I had extreme syptoms, severe fatigue, felt as if I weighed 2000 lbs, anxiety, cold/shivering, insomnia, depression, and the list goes on, I felt horrible, I felt like dawn of the dead.    

Prior to surgery my FT4 was low, my FT3 was normal/upper range.

Now after surgery, I feel fabulous ! cept for cold/shivering, no fatigue, no anxiety, no depression, all symptoms relieved, Etc..... just feeling cold/shivering.  My FT4 is normal, my FT3 is low.  Crazy isn't it.  

My FT3/FT4 went completely different direction, after surgery.  

So, would T3 reduce my symptom of cold/shivering or slight increase in Synthroid?  That's the magical question.  

Appears my body functions better normal FT4, low FT3,.  According to my labs.  

Most do really well, increased T3, but T3 may not work well with me, but will update in the future, if I go on T3,.  So going to give Synthroid increase a chance, see what happens for a bit.      

Sorry for long explaination :)      
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
No war - just a discussion because we want everyone to get the help they need.

I guess I'm not sure what you  mean by "inactive".  We do our best to make sure posts get answered and to help members get well.  

I think I'm pretty safe in saying that it's very unlikely that people don't like you on the forum.  We really don't know you very well.  When I first came on the forum, there were only one or 2 people who ever responded to my questions, as well. Admittedly, it was somewhat frustrating; we have no control over the number of responses that any given post will receive.

I'd say that possibly what happened with the synthroid post, is that people saw my comment saying that a lot of people do well on synthroid and maybe didn't have a lot to add; I often don't post on a thread if someone has already said the same things I would say, unless I have something to add or questions not already asked, because it simply sounds like I'm being a parrot.  

Like flyingfool said - people who are doing well, don't seek help in forums like this, so while there are thousands of people doing well on synthroid, most of them aren't likely to be on this forum answering posts, which is why mine was the only answer you got.  The only reason *I* am here is because I got so much help from members that I stuck around to pay it forward.

As to no one experiencing what you're feeling -- I think you can rest assured that the majority of us have been where you're at, at one point or another, even though many of us have not had TT - for those of us whose thyroid is no longer producing, it's the same as not having a thyroid; we just don't have a scar on our neck.

Being cold is one of the major symptoms of being hypo, even if it's just a little bit, and you don't even realize it.  AND there are other things that can cause you to feel cold, besides thyroid...... if you feel your thyroid levels are optimal for you, maybe you should research other causes, or talk to your doctor.

In regard to what medication you're on -- let me assure you that many of us are not on natural/desiccated hormones, and there's nothing wrong with that, because we can do just as well as those on the desiccated med and they have issues, just like we do.  I'm on Tirosint and generic T3 -- doesn't mean you or anyone else has to try it; it's simply one of the options out there.  The medication you're on, is between you and your doctor.  If you trust your doctor and believe you are doing well on the medication, by all means you should stay on it. As I stated in my earlier post...... there is no "one size fits all" medication; it all depends on the individual, how they tolerate the medication, what their doctor will prescribe, what's available in their area, etc.... there are a lot of factors to be taken into consideration.  

I'm happy to hear that I've been able to be of some help throughout your journey, and I'll be here for a long time yet to come, so I may still be the only one responding........ LOL
Helpful - 0
Avatar universal
Hi, I agree with both you all, I just feel the forum is very inactive opposed to other forums, I visit for apnea, diabetes, Etc....  One particular member on this forum, has helped me tremendously the past few yrs via PM,.  I am forever grateful to him.  

I am not here to start a flame war or bash any posting.  Just making forum aware of one members opinion.  

I'll share one of my own threads, I was referring to back Feb 2012 prior to surgery,.  Pertaining to positive affects of Synthroid, only one that answered was Barb.  Actually Barb is the only one that ever answers my questions, reason I feel I may be disliked here or somethin, cause I don't follow advice of natural hormone, get my labs a particular level, Etc....      

http://www.medhelp.org/posts/Thyroid-Disorders/Anyone-with-positive-results-using-Syntroid-after-TT--/show/1685359#post_7698780

I asked another question, pertaining to feeling cold/shivering, has anyone experienced.  Very few answers.  Someone could have stated, I felt cold/shivering when my level was at this TSH, this is what doctor did, I felt better, or my levels were normal, but I still felt cold/shivering, this is what doctor did to relieve the symptom.    

http://www.medhelp.org/posts/Thyroid-Disorders/Im-freezing---/show/1723934#post_7897135

I get the impression, no one has ever experienced, what I'm feeling.  

But other members on the forum, recieve multiple answers up to 40 plus replies.  Lot's of imbalance on the forum, is all I'm saying.  Reason I spend more time searching the net, then I do posting questions at the forum.

Thank you Barb for alway's answering my questions, you've been a tremendous help in my journey.  
Helpful - 0
Avatar universal
It should also be remembered that many people only come to this forum who are having problems or difficulties.  There are many if not most people who simply get a pill from their Dr and pharmacy and have no problems what so ever to even bother coming to this forum.  

The point I'm trying to make is that a lot of the successes out there never make it to the forum and we'll never know about them.  many people come here get great advice and get the results they need and never make more than a few posts and live happily ever after.

So what is left for the most part is the people who are having difficulties beyond the average person.  So treatments and what not have to be delved into further and more detail is needed.

Sometimes a person is feeling HORRIBLE and they are limited by Dr, hospital of pharmacy etc and can only get certain medicines etc. Yet they feel like crap.  What the members here do is try to help them get the proper medicine or take a difference course of action because if they want to feel well they may have to go that route.  They are begging for what to do and when given options they can't or won't do them. That is not the fault of this forum or its members for giving the best advice they can to help them feel better.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Wow - sounds like you have an ax to grind for some reason.

Assistance on this forum is not "one way or no way".......I'd sure like for you to point out a post where someone got "bashed" for taking synthroid;  many of us have suggested that a person switch from a generic levo to synthroid.  Many people can only take synthroid because of the fillers/binders in generics.  Others can take only dessicated medications.  There never has been, nor will there ever be a "one size fits all" thyroid treatment.

We are very well aware that some people can only get certain medications and/or tests.  We can only make recommendations; it's up to the patient to do what they can/will with it.

As to constipation on synthroid -- I think you'll find most answers, something to the effect that, "it's not the synthroid that causes the constipation, it's being hypo"...... Of course, people taking natural meds can have problems.  Again, I'd like to see a post where someone said they couldn't.  

Nobody is promoting anything, but health and well being, on this forum.  You will find posts recommending all types of medications, a variety of tests to be done, that might actually point to another problem, besides thyroid.  I'm a firm believer that too many people blame too many things on thyroid issues.

It's regretful that your experience on the forum has been so traumatic.  I'm happy to hear that your are doing well, and do hope that you continue to do so.
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