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#16 pricklypear1971

 
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Posted 02 May 2013 - 03:39 PM

Lol sometimes we just have to bend the rules !


Yep.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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#17 nvsmom

 
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Posted 03 May 2013 - 06:33 AM

Lol I have altered my lab requests too and he hasn't noticed...or at least doesn't mention it. Lol

I am just on t4 too right now but I am trying to get my frees up and TSH down,then i'llreassess how I feel, and get some t3.... From another doctor as mine refuses to give it to me.
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Hypothyroid - August, 2012

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#18 pricklypear1971

 
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Posted 03 May 2013 - 06:54 AM

Lol I have altered my lab requests too and he hasn't noticed...or at least doesn't mention it. Lol

I am just on t4 too right now but I am trying to get my frees up and TSH down,then i'llreassess how I feel, and get some t3.... From another doctor as mine refuses to give it to me.


If your problem is poor conversion or rt3 it won't happen. I'm not trying to be discouraging, just realistic.

I think I have a serious rt3 problem - meaning I build it up and quickly from t4. I've never been on just t4 ...but in the beginning (1year?), meds really helped. Then I hit a wall. That wall was rt3, but I didn't know it. Celiac was in there too, but hey...

Anyway, my point is if you don't use t4 well (and you won't know without proper labs and med experimentation) - you won't get far.

Despite my iron and d going up (and this is a long process for Celiacs), I still have an rt3 problem.

I have an rt3 problem. It's that simple.

Not saying you do, too...just trying to make it clear that sometimes you won't get anywhere, despite patience and doing "everything right".

Order your own labs from an online lab and find a new doc if necessary. Life is too short to waste on bad thyroid treatment (we get enough bad thyroid days when properly treated, anyway).
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#19 Ksee

 
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Posted 03 May 2013 - 10:36 AM

Gemini you have made a decision that is right for you which is different from mine and your point of view is valid from your perspective. I agree wholeheartedly with your opinion that some doctors can cause more harm than good. The sickest I have ever been was because an endocrinologist wouldn't listen or look at the obvious. If you don't need a thyroid supplement that is great.

I will clarify my opinion. A lack of thyroid hormone is a life threatening illness. The term is  Myxedema which left uncorrected progresses to coma and death. I know this firsthand and might not ever fully recover from it.

I specified a suggestion for a "good endocrinologist" and continued work until solutions are found. For me to advocate any other action in a potentially life threatening situation would be completely irresponsible. 

Even in the midst of my horrible experience I never quit seeing a doctor, I found another doctor who understood how sick I was before I had to be hospitalized.  I would never put my endocrine treatment in the hands of a lay person or encourage anyone to dismiss or disregard the advise of a physician without first finding an appropriate replacement.

I didn't mention in my response the wording this member used that indicate to me, as a nurse, a need for this person to be working with a doctor. I didn't mention that because it's not for me to diagnosis but to encourage and facilitate treatment of potential health risks. 

I offered a strong opinion because I have reason to think the importance of this question required it . I also consider it a mistake to look at my experience as the only valid point of view. I  won't minimize opinions or decisions. of others.  I support individuals ability to make choices and offer experiences for the consideration of others. I hope others will offer  the same support and consideration to me.. 


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#20 Gemini

 
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Posted 03 May 2013 - 10:58 AM

Hi Gemini, you mentioned that someone who's had their thyroid removed should supplement with T3. I've read this before somewhere, but like you said, getting an endo or doctor to listen is impossible!! So I really don't have a choice and just have to put up with the T4 only :(

It's infuriating, isn't it?  I go to a functional medicine MD here in the States because she was the ONLY ONE who doses with both T3 and T4.  Most endo's here and Primary Care Physicians are not on board with T3, either.  I think they just want to keep us feeling on the bad side for business purposes.  There is a big difference in how you feel when you add T3.  Are there any more holistic type docs in Britain that you have access to?  I pay for office visits out of pocket but all my labs are covered by insurance. 

 

There ought to be a law......... <_<


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#21 Gemini

 
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Posted 03 May 2013 - 11:11 AM

Gemini you have made a decision that is right for you which is different from mine and your point of view is valid from your perspective. I agree wholeheartedly with your opinion that some doctors can cause more harm than good. The sickest I have ever been was because an endocrinologist wouldn't listen or look at the obvious. If you don't need a thyroid supplement that is great.

I will clarify my opinion. A lack of thyroid hormone is a life threatening illness. The term is  Myxedema which left uncorrected progresses to coma and death. I know this firsthand and might not ever fully recover from it.

I specified a suggestion for a "good endocrinologist" and continued work until solutions are found. For me to advocate any other action in a potentially life threatening situation would be completely irresponsible. 

Even in the midst of my horrible experience I never quit seeing a doctor, I found another doctor who understood how sick I was before I had to be hospitalized.  I would never put my endocrine treatment in the hands of a lay person or encourage anyone to dismiss or disregard the advise of a physician without first finding an appropriate replacement.

I didn't mention in my response the wording this member used that indicate to me, as a nurse, a need for this person to be working with a doctor. I didn't mention that because it's not for me to diagnosis but to encourage and facilitate treatment of potential health risks. 

I offered a strong opinion because I have reason to think the importance of this question required it . I also consider it a mistake to look at my experience as the only valid point of view. I  won't minimize opinions or decisions. of others.  I support individuals ability to make choices and offer experiences for the consideration of others. I hope others will offer  the same support and consideration to me.. 

The decision I made is mirrored by thousands of others who never receive proper thyroid treatment from mainstream physicians. Most are borderline malpractice.  I have been doing this for over 20 years and have been on natural thyroid hormone for that length of time, except for a period of being on T4 only....bad idea. It never works well for those of us with advanced thyroid disease.  My thyroid was pretty far gone by the time I was diagnosed and then didn't get better because I also had Celiac and wasn't absorbing the meds.  I don't recall telling people to ditch their doctors but to get pertinent and real information on thyroid treatment from those of us who have learned the hard way how it really should be done, and then search for a doctor who is willing to treat by symptoms also and not rely solely on lab work.  If you don't find them right away, you need to keep searching.  Endocrinologists can be the worst people to work with.  Many have found good results with functional medicine doctors, who are MD's in case you are not familiar with that specialty.  I never found an endo who was worth their salt.   Not to say there aren't good ones out there but they are few and far between.  But I never tell people to stop going to doctors, just try and steer them to the right people who actually know what they are doing.


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#22 VeggieGal

 
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Posted 03 May 2013 - 11:20 AM

It's infuriating, isn't it? I go to a functional medicine MD here in the States because she was the ONLY ONE who doses with both T3 and T4. Most endo's here and Primary Care Physicians are not on board with T3, either. I think they just want to keep us feeling on the bad side for business purposes. There is a big difference in how you feel when you add T3. Are there any more holistic type docs in Britain that you have access to? I pay for office visits out of pocket but all my labs are covered by insurance.

There ought to be a law......... <_<


Theres no holistic doctors which would deal with this that I know of :( . In what way do you feel better by adding t3? Although, apparentely my levels are "fine" my symptoms sway from hypo to hyper and I never know what kind of day I'm going to have and some of the symptoms interlink with celiac so its confusing on whether I've been gluttened or not!

I've even thought about buying t3 from ebay but then I would'nt know what dosage (Ive read it can be dangerous if you take too much) and of course there could be anything in those bottles! :( . I will try and find an holistic doctor though, thanks, thats a good idea :) .
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#23 Ksee

 
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Posted 03 May 2013 - 11:50 AM

I apologize Gemini, I didn't realize the word "endocrinologist" was so upsetting. 

Could you read what I  said and replace the objectionable word with "doctor"? Let me know if you still disagree, I am more than happy to discuss.

I agree with you. and support your choices. I responded to what I perceived as the suggestion to talk to people on this board rather than an appropriate doctor. I am happy to hear that was not your intent.

I believe we can agree this member should be seeing an appropriate doctor, yes? I find this important you see, because in the initial post, the member didn't mention a specialist or doctor with previous and successful experience treating his condition.

I don't really care if he goes to an OB/gyn as long as the treatment fits the disease. 


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#24 IrishHeart

 
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Posted 03 May 2013 - 01:17 PM

 


 

I saw this " TSH - should be close to a 1"

 

Not to cause a fuss, but I have to chime in here.  :) The TSH does not need to be close to 1 to be a "normal level" for everyone.

 

At .8 or 1, I was a trembling insomniac and a mess. I was hyperthyroid, in every sense of the word. I was at 5.3 and then I zoomed to .8, hovering around 1 for awhile. This bouncing around went on for 2 years.

This was because I was given levothyroxine when I did not really need it and I was as yet undiagnosed for celiac.. 

Why? because this is what endocrinologists do. Give meds to everyone who walks through the door for a consult.

 

My thyroid was sluggish from UnDXed celiac. (My entire family has some form of thyroid disease, the majority of them take thyroid medicine, one has had a goiter removed, one had a thyroidectomy because of thyroid cancer.) 

 

I took myself off that stupid drug when I asked a doctor point blank, if I do not have thyroid antibodies, why the hell am I on meds? I want to stop them as they are making me HYPERthryoid and wired for sound. He had no good answer and said " I have no clue why they gave them to you so stop taking them.  

 

My TSH reads consistently between  2.0 and  2.4. My Free T3  and T4--perfect.

I have no symptoms of hashimoto's thyroiditis. None.

....yet, an endo's NP told me I would be on meds for the rest of my life.

And the man who orders that TSH, Free T3 and free T4 testing for me is my GI doctor, although my GYN has offered to do if I want.

 

The only thing the endocrinologist did for me was make things drastically worse.

Gluten free---- and my thyroid is functioning normally. 

 

To the OP: that said, whomever did the thyroidectomy should have done follow up care with you.

It is entirely possible you need medications and it is entirely possible you will not need such a high dose if you go gluten-free. We see it often on here.

The point is, do not try to medicate yourself or withdraw a prescription for a serious medical condtiion without the help of some type of medical professional. You cannot get anything from a compounding pharmacy without someone writing a script anyway, so find someone you trust to help you. IMHO

 

This is not easy for me to say, given the way I was left to die by the medical profession and how I feel about the AMA, but in this case, I am reluctant to say "just do this yourself".

 

None of us on here are doctors and none of us can or should  tell you what to do, we can only tell you what worked for us

in our unique situations.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#25 pricklypear1971

 
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Posted 03 May 2013 - 01:41 PM






I saw this " TSH - should be close to a 1"

Not to cause a fuss, but I have to chime in here. :) The TSH does not need to be close to 1 to be a "normal level" for everyone.

At .8 or 1, I was a trembling insomniac and a mess. I was hyperthyroid, in every sense of the word. I was at 5.3 and then I zoomed to .8, hovering around 1 for awhile. This bouncing around went on for 2 years.
This was because I was given levothyroxine when I did not really need it and I was as yet undiagnosed for celiac..
Why? because this is what endocrinologists do. Give meds to everyone who walks through the door for a consult.
.

My thyroid was sluggish from UnDXed celiac. (My entire family has some form of thyroid disease, the majority of them take thyroid medicine, one has had a goiter removed, one had a thyroidectomy because of thyroid cancer.)

I took myself off that stupid drug when I asked a doctor point blank, if I do not have thyroid antibodies, why the hell am I on meds? I want to stop them as they are making me HYPERthryoid and wired for sound. He had no good answer and said " I have no clue why they gave them to you so stop taking them.

My TSH reads consistently between 2.0 and 2.4. My Free T3 and T4--perfect.
I have no symptoms of hashimoto's thyroiditis. None.
....yet, an endo's NP told me I would be on meds for the rest of my life.
And the man who orders that TSH, Free T3 and free T4 testing for me is my GI doctor, although my GYN has offered to do if I want.

The only thing the endocrinologist did for me was make things drastically worse.
Gluten free---- and my thyroid is functioning normally.

To the OP: that said, whomever did the thyroidectomy should have done follow up care with you.
It is entirely possible you need medications and it is entirely possible you will not need such a high dose if you go gluten-free. We see it often on here.
The point is, do not try to medicate yourself or withdraw a prescription for a serious medical condtiion without the help of some type of medical professional. You cannot get anything from a compounding pharmacy without someone writing a script anyway, so find someone you trust to help you. IMHO

This is not easy for me to say, given the way I was left to die by the medical profession and how I feel about the AMA, but in this case, I am reluctant to say "just do this yourself".

None of us on here are doctors and none of us can or should tell you what to do, we can only tell you what worked for us
in our unique situations.


We agree that tsh levels are bull.

If yours is high it's great to use to get a doc to listen. Otherwise, forget it. For most patients it isn't a barometer of how well their thyroid allows them to feel.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#26 IrishHeart

 
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Posted 03 May 2013 - 01:54 PM

Just to be clear, I did not say the TSH level is bull.

 

I said that the statement "it should be close to 1"  is  not really true.

 

The many symptoms I exhibited when I was ill from celiac --which mimicked those of hypothyroidism exactly---AND the 5.3 TSH  reading

the endo doctor saw that ONE TIME gave him the impression I "needed to be " on thyroid medication.

It was a gross error. 

 

A TSH reading can bounce around for any number of reasons. I believe some people rush to be on medications when there is no need

because they read a lot of internet sites claiming the reason for all their problems is low thyroid. 

 

If you actually have thyroid disease, yes...medications are necessary, of course.

 

I am using the "you" here editorially.  :)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 pricklypear1971

 
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Posted 03 May 2013 - 03:27 PM

Just to be clear, I did not say the TSH level is bull.

I said that the statement "it should be close to 1" is not really true.

The many symptoms I exhibited when I was ill from celiac --which mimicked those of hypothyroidism exactly---AND the 5.3 TSH reading
the endo doctor saw that ONE TIME gave him the impression I "needed to be " on thyroid medication.
It was a gross error.

A TSH reading can bounce around for any number of reasons. I believe some people rush to be on medications when there is no need
because they read a lot of internet sites claiming the reason for all their problems is low thyroid.

If you actually have thyroid disease, yes...medications are necessary, of course.

I am using the "you" here editorially. :)


Well, I think the tsh is bull.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#28 IrishHeart

 
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Posted 03 May 2013 - 03:45 PM

Well, I think the tsh is bull.

 

okay ,if you say so.... .that is your opinion and you have a right to it.

:)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 nvsmom

 
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Posted 03 May 2013 - 06:50 PM

TSH isn't the most reliable. Many thyroid patients (and authors) are of the opinion that many doctors have lost the ability to treat thyroid patients by their symptoms since the almighty TSH was created. I agree with that based on my own experiences.

I posted that the TSH should be near a 1, and you are totally right that I did not word that well. I tend to slip into broad,sweeping statements like that when I am getting lazier with my responses. I should have written: Many hypothyroidism patients tend to feel their best when their TSH is close to a 1... I don't believe I have ever read that the same rule applies to euthyroid (normal) patients.

As for endocrinologists, I live in an area where they really only see patients with diabetes so thyroid patients just use their family doctors for the most part. Most of these doctors are discouraged from prescribing natural thyroid or T3. Many have to find a naturopath to give them that. It is a broken system (IMHO).
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#30 Gemini

 
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Posted 03 May 2013 - 08:18 PM

Theres no holistic doctors which would deal with this that I know of :( . In what way do you feel better by adding t3? Although, apparentely my levels are "fine" my symptoms sway from hypo to hyper and I never know what kind of day I'm going to have and some of the symptoms interlink with celiac so its confusing on whether I've been gluttened or not!

I've even thought about buying t3 from ebay but then I would'nt know what dosage (Ive read it can be dangerous if you take too much) and of course there could be anything in those bottles! :( . I will try and find an holistic doctor though, thanks, thats a good idea :) .

By adding T3, my thyroid is more stable with regards to the T3 and T4 levels and I have more energy.  I was draggy and symptoms returned on T4 only.  My nails start to split and that's a sure sign for me that my thyroid is low.  I also can become anemic as thyroid function plays a role in red blood cell production.

I swung from hypo to hyper also for awhile.  It was after I had healed and started to absorb my meds better.  Then the dose became too high and it was no picnic.  It took about 6 months to re-figure the dose and I was going from high to low.  It happens with Hashi's but luckily, it happened only once to me. Once was enough.

 

Do not take any T3 that is bought over the counter.  You really need to be having blood levels checked and get a good starting dose from a doctor. The trouble is finding a doctor, I know!  Be patient because you are newly gluten free and things can be wonky until your gut heals and things settle out. I hope you can find someone that may be able to help you better......I know how frustrating that can be.


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