Thyroid Disorders Community
TSH/thyroid info confusion *warning* long post
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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TSH/thyroid info confusion *warning* long post

Hi everyone, I've learned that FT3/FT4 relieves/eliminates symptoms.  TSH is not an important value, specially for those without a thyroid, pit gland signals thyroid.  I was reviewing a chart stating.  
TSH > low
FT3 > normal
FT4 > normal > results in mild hyperthyrodism.  

Reason I'm confused here, for those without a thyroid, pit gland value (TSH) should be zero, cause thier is no thyroid to signal?  Why? does pit gland still function, If only FT3/FT4 should be monitored?  What I don't get is, why does physicians/endo's continue to test TSH on TT patients?  I understand the theory pertaining to forum, but not medical theory, what physicians/endo's learned.  It's pointless to have confrontations with physician/endo without facts, apparently we don't know more then they were educated/trained.  Oral discussions with physicians/endo usually leads to no where.  Cause many patients under thier care, does really well with thier treatments.  So it's like 5 out of 50 patients that struggle with the medical professional.  

Nothing is making any sense to me.  I spoke with my surgeons secretary, that had TT, on T4 med only, prior to my surgery, she shared she's doing perfectly fine, it was a bit rough at first.  We have the same endo at the same hosptial !  Whom I think is a dink !  But he wouldn't be an endo for 30 plus yrs if he was a dink, according to hospital.  

So why, is TSH irrelevanat to TT patients.  Need medical facts, to discuss with my endo.  Are there any facts pertaining to TT patients, opposed to patients with thyroids?

Endo - Where did you obtain your information
Me - Thyroid message forums

I'm an Engineer, love to analyze, ask questions, Lol !!!!  Actually MedHelp should have Thyroidectomy section.  

Hard thing about thyroid journey is, there are alway's two sides to every story.  Every physician has a different opinion.  At the thyroid association brochure states page 16, early studies have shown that some patients felt better on the combination of FT4/FT3, but improvement didn't last.  It also states, T4-T3 combination might be of some help to people who have had thier whole thyroid removed and can't make T4 or T3,.  Taking too much T3 can seriously harm the heart.  

Another member at another forum, had similiar labs to mine just after surgery normal TSH, FT4, borderline low FT3, was given 5mg T3, states a few day's later, had heart palps so bad, they had a panic attack.  I'll stop here, cause I can write a book, Lol !!!

Seems to me, thyroid section is leaning towards one treatment fits all, opposed to sharing experiences.  Some members provide excellent information, but I and many others know nothing about thier experiences, as to why thier treatments make them feel well, share thier journey, other then FT3/FT4 in the mid/upper range.  Hardly anyone has a journal, that provides information.  

One person could have had thyroid disorder for 20 yrs, while another 8 months.  Person is not going to state, it took 2/4 or 6 yrs to get thier levels optimal, this will only discourage.  

Now I'm beginning to wonder if there are pharmaceutical companies on here, trying to promote thier meds.  This is why you should be on synthetic, this is why you should be on natural, your blood labs should look like this.  Are we sharing experiences or what's best treatment for everyone.  One treatment fits all.  Maybe all a person desires is support.      

Sorry, if I hurt anyone's feelings, I've alway's been an honest person, share whatever is on my mind.  
Thanks for reading/opinion :)      



    
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Avatar_m_tn
The only thing I see is that the AACE/ATA and Dr's in general are overwhelmingly in favor of two primary things.  1) TSH only testing and belief that it is the end all, be all gold standard no other test is worth doing and 2) T4 only treatment.

There are certainly exceptions but in general THAT is the gorilla that needs to be fought by most everyone.  If you want to see most Dr's have a nearly grand maul seizure, just start talking about Natural Dissected Thyroid (NDT) medicines such as Armour. They will about come out of the chair and provide you a laundry list of why that medicine is worthless if not nearly dangerous.  Due in part to its supposed inconsistency's because each pig is different so there is no way to control the potency of the resultant medication.

Yet the truth of the matter is that NDT has been used successfully for over 100 years. And in fact there have been more recalls due to potency inconsistencies from the synthetic medications than NDT.  The FACTS are that many people do by far the best with NDT.

next if you mention Cytomel or FT3 medication even as an add on supplement.  They again think you are nuts and think you're only out to lose weight and your symptoms are all in your head. After all your TSH is this or that and maybe your FT4 is in range.  But that doesn't mean your FT3 are anywhere near where they need to be.  But they don't seem to care.

As stated by Barb above, the Pituitary has no clue the Thyroid is gone.  This would be akin to the thermostat on your home measuring the temperature in your house. It has no idea that they main furnace to your home has been removed. And that you are using several space heaters in the home for heat.  The thermostat will still measure the temp and send the signal to the now vacant central furnace to turn on or off.  Your Pituitary is doing the same thing. So it will continue to produce TSH in response to what it "sees" the level of thyroid is in your blood.

There is no direct correlation to X number of mcgs reduction in medicine dosage will result in Y Result in FT4 and FT3 level response. It's not that simple.  Sure an increase in dosage should raise it, and a decrease should lower levels. But by how much and for which one is dependent upon lots of things and on top of that each one of us is different.

This is exactly why a one treatment fits all approach is quite frankly asinine.

The best think I think you can do for yourself is read A LOT.  Print out many of the articles and highlight etc relevant information to you and your situation.  Go to other sites etc.  I've found the National Hypothyroid Association has a lot of good information and articles.  You can also go to "stop the thyroid madness" site as well. Many of us here can likely provide a series of other websites and report locations etc. The stop the madness  site seems biased towards natural dissected thyroid medicines but if you take that into consideration the information is still valuable.  Finding several locations for information can help you draw your own conclusions.

We all know that big Pharma has deep pockets and long tentacles. But they primarily put their money where it will influence the people that can directly affect their bottom line.  Thus they will spend their money persuading Dr's or influencing or not conducting or supporting research that may hurt their bottom line.  

All of us here on this site are just average Joe's or Josephine's  who are simply at wits ends in our search to fell better.  We have no reason for big pharma to influence us lowly sick individuals one way or the other. They don't waste their time with the likes of us.

People on this site from time to time will get very passionate about a particular specific medicine or treatment procedure because it worked for them. And because of this, they passionately believe that it will work for everyone.  Which is not true.  So if you understand this you can get a better flavor to the postings here as well as other thyroid sites.

4 Comments Post a Comment
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649848_tn?1357751184
You're misunderstanding the pituitary -- it doesn't know that you don't have a thyroid, so it's still trying to signal for thyroid hormones, so TSH should not be zero.

To my knowledge, there are no pharma companies on this forum and I think we've been through this before; we do not advocate "one treatment fits all".  The bottom line is:  if you are doing well on a particular medication, there's no reason to change it, simply because someone else does well on a different medication.  I take Tirosint and love it, but there are tons of posts on this forum from people who didn't do well on it.  Tirosint is hypoallergenic, so I can only speculate on why they didn't do well.

Sometimes, it does take a year or more for things to stabilize. I've been at this for nearly 5 years and just this year, I've stabilized, even though I've been on dosages between 75 mcg/day and 100 mcg/day and finally settled at 88 mcg/day for the past couple of years, along with a small dose of T3 med, since Jan 2009.

AACE/ATA are leaning toward "one size fits all" - this forum is not.  It's all what works for the individual; there are no hard and fast rules, and all options should be left open. The biggest problem that I see is that too many doctors are not open to all variations of treatment.

I know you quite well, and it's only fair to let others know that we've been communicating via PM the past couple of days.  One problem for you is that you have other medical issues that cause similar symptoms as thyroid conditions can, so you have to make sure they are all optimal at the same time.  That's quite a juggling act.

Many people don't post journals, because journals are considered to be quite personal.   I used to, but it seemed that things were always the same.  I'll think about it.  

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Avatar_m_tn
Hi Barb, thanx for all you shared/support.  You have been super wonderful to me and all members at this forum.  Believe sometimes I become frustrated with the medical system, as you shared not open to other forms of treatment.  It can be really frustrating at times, not being able to convince physician/endo, your treatment is not working.  But no facts to back it up.  I can be a very impatient person, a flaw in my personality.  My body has gone to he!! and back with multiple health disorders, each have been resolved the past 3 yrs, cept for my hormonal imbalance.  I wasn't understanding what was taking so long, but now I do.  

Sorry if anyone felt my post was offensive, I had to vent to fellow thyroid members, whom understand what we all go through.  

I began with 200 Levo > 225, now all the way down to .150mg,.  Due to high FT4,.  How does my FT4 go from normal to severely elevated on .25mg increase, then dropped .75 mg, just to get level back to the normal range?  Math doesn't make any sense.  Well neither does thyroid disorder, Lol !!!  The whole time, I began having hypo symptoms, then find out I'm still hyper !  Have another blood lab Monday, for TSH/FT3/FT4, which will show the true picture.    

The past few months my primary has been trying to get my FT4 back down into the normal range.  Oh well, need to take a break from the forums, wishing everyone well on thier journey.  
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649848_tn?1357751184
I doubt that you offended anyone.  

I'm not sure why your FT4 is staying high; in my opinion, it has as much to do with the reference range used, as anything else.  Another issue is that your FT3 is not being tested on a regular basis, so you don't know if you converting adequately, or not.  When FT4 is high, but FT3 is low, there's an indication of poor conversion, which would account for your hypo symptoms.

Additionally, you may be one of those who simply doesn't fit into the reference ranges. It's also possible that adjusting your med in 25 mcg increments is too much.  You might talk to your doctor about alternating dosages or something, in order to adjust more slowly.

As I noted, also, you have other health issues; one of them being diabetes.  Don't forget that insulin is a hormone, just as FT3/FT4 are hormones, and insulin issues can cause many of the same symptoms as thyroid.  
Blank
Avatar_m_tn
The only thing I see is that the AACE/ATA and Dr's in general are overwhelmingly in favor of two primary things.  1) TSH only testing and belief that it is the end all, be all gold standard no other test is worth doing and 2) T4 only treatment.

There are certainly exceptions but in general THAT is the gorilla that needs to be fought by most everyone.  If you want to see most Dr's have a nearly grand maul seizure, just start talking about Natural Dissected Thyroid (NDT) medicines such as Armour. They will about come out of the chair and provide you a laundry list of why that medicine is worthless if not nearly dangerous.  Due in part to its supposed inconsistency's because each pig is different so there is no way to control the potency of the resultant medication.

Yet the truth of the matter is that NDT has been used successfully for over 100 years. And in fact there have been more recalls due to potency inconsistencies from the synthetic medications than NDT.  The FACTS are that many people do by far the best with NDT.

next if you mention Cytomel or FT3 medication even as an add on supplement.  They again think you are nuts and think you're only out to lose weight and your symptoms are all in your head. After all your TSH is this or that and maybe your FT4 is in range.  But that doesn't mean your FT3 are anywhere near where they need to be.  But they don't seem to care.

As stated by Barb above, the Pituitary has no clue the Thyroid is gone.  This would be akin to the thermostat on your home measuring the temperature in your house. It has no idea that they main furnace to your home has been removed. And that you are using several space heaters in the home for heat.  The thermostat will still measure the temp and send the signal to the now vacant central furnace to turn on or off.  Your Pituitary is doing the same thing. So it will continue to produce TSH in response to what it "sees" the level of thyroid is in your blood.

There is no direct correlation to X number of mcgs reduction in medicine dosage will result in Y Result in FT4 and FT3 level response. It's not that simple.  Sure an increase in dosage should raise it, and a decrease should lower levels. But by how much and for which one is dependent upon lots of things and on top of that each one of us is different.

This is exactly why a one treatment fits all approach is quite frankly asinine.

The best think I think you can do for yourself is read A LOT.  Print out many of the articles and highlight etc relevant information to you and your situation.  Go to other sites etc.  I've found the National Hypothyroid Association has a lot of good information and articles.  You can also go to "stop the thyroid madness" site as well. Many of us here can likely provide a series of other websites and report locations etc. The stop the madness  site seems biased towards natural dissected thyroid medicines but if you take that into consideration the information is still valuable.  Finding several locations for information can help you draw your own conclusions.

We all know that big Pharma has deep pockets and long tentacles. But they primarily put their money where it will influence the people that can directly affect their bottom line.  Thus they will spend their money persuading Dr's or influencing or not conducting or supporting research that may hurt their bottom line.  

All of us here on this site are just average Joe's or Josephine's  who are simply at wits ends in our search to fell better.  We have no reason for big pharma to influence us lowly sick individuals one way or the other. They don't waste their time with the likes of us.

People on this site from time to time will get very passionate about a particular specific medicine or treatment procedure because it worked for them. And because of this, they passionately believe that it will work for everyone.  Which is not true.  So if you understand this you can get a better flavor to the postings here as well as other thyroid sites.

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