Hashimoto's Syndrome

[kcorcoran2013]

If you have a goiter in your thyroid that has been caused by hashimoto's syndrome, and you have all or part of your thyroid removed, does that cure the hashimoto's?

 

[nvsmom]

Not usually.

[kcorcoran2013]

Thanks for the response.  I didn't think it did, but I had a doctor tell be that it did.  I thought I'd ask people who REALLY know; i.e. people who actually have the disorder! =)

 

So than, what is the best way to manage it?  My symptoms are not severe, but I am so tired of struggling with my, not constant low energy but bouts of it!  I was hoping that going gluten-free would make a noticeable difference, but it has been 2 months and I have not seen any change in that area.

[VeggieGal]

Are you dx as celiac? 2 months gluten free is still early days, it can take along time for your intestines to heal before you start absorbing nutrients. Have you had your iron and B12 levels checked? I had my thyroid removed due to graves and now I'm on the right dosage of levothyroxine apparentely...but l agree with nvsmom. I suffer with severe fatigue but its very slowly improving. I'm hoping its down to celiac, so that hopefully...eventually I'll start to heal (its been 4 months for me). Are you taking probiotics and digestive enzymes? If not, have a look at Newbie 101 on here for some helpful tips. Good luck

[kcorcoran2013]

I have been gluten intolerant for 20plus years.  I tested negative for celiac about 5 yrs ago but was on meds that kept me from throwing up.  At the time I thought that was all I needed to do but my more recent research has shown me that many of my other health issues have been from the gluten intolerance.  So, I gave up the medicine for a gluten free diet.  Now that I know about the hashimoto's I am trying to figure out my next step.  I just had my annual physical and the Dr. tested for vitamin D (which I have been deficient in before), vitamin B12, and several of the thyroid tests.  I have been hearing about the probiotics and enzymes and will have to try those.  I also am thinking about going to an endo. doctor to see what they may have to say.

[VeggieGal]

Its definately worth seeing an endo and maybe see if theres alternative meds if you still need them. I'm also vit d deficient which is needed to absorb calcium. On the plus, at least you've identified being gluten-free to be helping some of your other health issues...may you continue in your healing

[nvsmom]

When you get your thyroid tests done, make sure you get copies of your labs and don't take your doctor's declaration of "normal results" to stop you from getting care you need. My doctor keeps saying I am normal - he's been saying that as soon as my TSH dropped below a 6. I just tell him I'm upping my doses now and check in every 8 weeks for test results ... he's an idiot. Anyway, a lot of them do that. I sugest researching your own results and symptoms too.

 

As for the tests:

TSH - should be close to a 1

Free T4 and Free T3 - should be in the 50-75% portion of your lab's normal reference range

TPO Ab - should be pretty low even within the normal range

 

Hashi's takes a long time to get sorted. I was diagnosed back in August and I am finally getting my labs closer to where I want to try them, and just starting to feel some improvement in symptoms.  Darn fatigue is still there.

 

Best wishes.

[kcorcoran2013]

The Drs office told me today that all of my bloodwork was normal.  I asked them to mail me a copy of it so I could see the ranges.  When I get it I will compare my numbers with what nvsmom  says they should be and go from there.  Thanks!

[Ksee]

The Drs office told me today that all of my bloodwork was normal.  I asked them to mail me a copy of it so I could see the ranges.  When I get it I will compare my numbers with what nvsmom  says they should be and go from there.  Thanks!

Hashimoto's Thyrotoxicosis is an autoimmune process. That means your body is over-reacting and treating your own tissues as foreign. Celiac is another autoimmune process. When you body begins attacking itself there can be tissue damage in more than one part of the body.

In one respect, removing the thyroid does not "fix" the problem but it is a treatment. Removing the thyroid gives you a stable endocrine system that can be supplemented accurately and appropriately which is what your doctor was trying to explain. Your doctor does understand what is going on.

Endocrine problems are like ripples in a pond. Toss a stone in a pond and wait a couple of minutes before looking at the ripples. Now try to sort out where all the ripples have come from. Sorting out endocrine issues is a bit like those ripples because it's difficult and takes a lot of training to understand how all the body systems are affected by changes and imbalances.

Last I looked, the standard low range was a TSH of 5.8. There are other factors controlling TSH that can cause your levels to become low. Labs across the country do not use a standardized level in many cases which is why all lab results are printed with the range from that particular lab.

All this is very complicated like those ripples in the pond. I'm wondering who diagnosed you in the beginning and did your surgery? You can take matters in your own hands many times but with endocrine problems, find a good endocrinologist and until then please keep working with your doctor and follow that advise. Anything else is risking your health.  .

[Gemini]

Hashimoto's Thyrotoxicosis is an autoimmune process. That means your body is over-reacting and treating your own tissues as foreign. Celiac is another autoimmune process. When you body begins attacking itself there can be tissue damage in more than one part of the body.

In one respect, removing the thyroid does not "fix" the problem but it is a treatment. Removing the thyroid gives you a stable endocrine system that can be supplemented accurately and appropriately which is what your doctor was trying to explain. Your doctor does understand what is going on.

Endocrine problems are like ripples in a pond. Toss a stone in a pond and wait a couple of minutes before looking at the ripples. Now try to sort out where all the ripples have come from. Sorting out endocrine issues is a bit like those ripples because it's difficult and takes a lot of training to understand how all the body systems are affected by changes and imbalances.

Last I looked, the standard low range was a TSH of 5.8. There are other factors controlling TSH that can cause your levels to become low. Labs across the country do not use a standardized level in many cases which is why all lab results are printed with the range from that particular lab.

All this is very complicated like those ripples in the pond. I'm wondering who diagnosed you in the beginning and did your surgery? You can take matters in your own hands many times but with endocrine problems, find a good endocrinologist and until then please keep working with your doctor and follow that advise. Anything else is risking your health.  .

 You do not need an endocrinologist to maintain a healthy thyroid level.  I dropped them because they really are clueless about thyroid disease and have a bad habit of only checking thyroid using TSH.  That is what I would define as risking your health.

 

There are a few people on here who really know thyroid issues well....better than most doctors.  Of course you have to make use of doctors so you can have your blood work checked but if a doctor is giving you bad advice, then you ask those with experience in the matter and include their comments and suggestions accordingly.  They can then take that advice back to your doctor and push for better treatment.  If the doctor refuses to listen, then you know you need another one.  Anyone who solely relies on an endocrinologist or a PCP for thyroid treatment is making a mistake....unless you hit the jackpot and pick a doctor who knows what they are doing.  Those are much rarer than you think.  People need to educate themselves well on thyroid disease if they have it because doctors are notorious for under treating the condition, which is dangerous.

 

I will say that for myself, staying strictly long term gluten-free will help thyroid issues in many cases.  Once you remove the source of aggravation to your immune system, it has a profound effect on other AI conditions.  It's all about inflammation.  If your thyroid has been removed, it is really essential that you supplement with thyoid hormone that contains both T3 and T4...another thing many doctors fail to do.  Suppressing TSH is another method which can work very well in balancing your thyroid hormones and bringing antibody levels into the normal range.  The only numbers you need to follow after diagnosis are the free T3 and T4, and then include the antibody testing to make sure those come down into normal range.  I think that may not apply to someone who has had their thyroid removed, though.  Checking TSH is for diagnosis purposes only...not to maintain levels after diagnosis.

[VeggieGal]

You do not need an endocrinologist to maintain a healthy thyroid level. I dropped them because they really are clueless about thyroid disease and have a bad habit of only checking thyroid using TSH. That is what I would define as risking your health.

There are a few people on here who really know thyroid issues well....better than most doctors. Of course you have to make use of doctors so you can have your blood work checked but if a doctor is giving you bad advice, then you ask those with experience in the matter and include their comments and suggestions accordingly. They can then take that advice back to your doctor and push for better treatment. If the doctor refuses to listen, then you know you need another one. Anyone who solely relies on an endocrinologist or a PCP for thyroid treatment is making a mistake....unless you hit the jackpot and pick a doctor who knows what they are doing. Those are much rarer than you think. People need to educate themselves well on thyroid disease if they have it because doctors are notorious for under treating the condition, which is dangerous.

I will say that for myself, staying strictly long term gluten-free will help thyroid issues in many cases. Once you remove the source of aggravation to your immune system, it has a profound effect on other AI conditions. It's all about inflammation. If your thyroid has been removed, it is really essential that you supplement with thyoid hormone that contains both T3 and T4...another thing many doctors fail to do. Suppressing TSH is another method which can work very well in balancing your thyroid hormones and bringing antibody levels into the normal range. The only numbers you need to follow after diagnosis are the free T3 and T4, and then include the antibody testing to make sure those come down into normal range. I think that may not apply to someone who has had their thyroid removed, though. Checking TSH is for diagnosis purposes only...not to maintain levels after diagnosis.

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

[pricklypear1971]

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

You can order labs from online labs. Your bloodwork will be processed at a lab like LabCorp.

You can also find a doc who treats thyroid based on how you feel, not labs. It takes alot of work and kissing lots of frogs, but it can be done.

Call a compiunding pharmacy near you and ask for a reco for a doc who regularly prescribes t3 or natural therapy. They will know.

[VeggieGal]

You can order labs from online labs. Your bloodwork will be processed at a lab like LabCorp.

You can also find a doc who treats thyroid based on how you feel, not labs. It takes alot of work and kissing lots of frogs, but it can be done.

Call a compiunding pharmacy near you and ask for a reco for a doc who regularly prescribes t3 or natural therapy. They will know.

Thanks pricklypear, I'm in the uk, so not sure if thats possible? but I will certainly look into it

When I asked my doctor about it a year ago, (incidentally, I was naughty and i added ft3 and ft4 to the blood test form), he said that all levels were ok and my body was converting to t3. But he never measured rt3 ...oh I don't know, its frustrating !

[pricklypear1971]

Thanks pricklypear, I'm in the uk, so not sure if thats possible? but I will certainly look into it

When I asked my doctor about it a year ago, (incidentally, I was naughty and i added ft3 and ft4 to the blood test form), he said that all levels were ok and my body was converting to t3. But he never measured rt3 ...oh I don't know, its frustrating !

Here's a dirty little secret. Find any quack who will write a script - in the US we have legitimate Naturapaths and then we have quacks - it's best to find a legit doc, but if it comes down to it, find a fool who will legally write an rx and get one.

[VeggieGal]

Here's a dirty little secret. Find any quack who will write a script - in the US we have legitimate Naturapaths and then we have quacks - it's best to find a legit doc, but if it comes down to it, find a fool who will legally write an rx and get one.

Lol sometimes we just have to bend the rules !

[pricklypear1971]

Lol sometimes we just have to bend the rules !

Yep.

[nvsmom]

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.

[pricklypear1971]

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).

[Ksee]

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.. 

[Gemini]

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.........

[Gemini]

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.

[VeggieGal]

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 .

[Ksee]

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. 

[IrishHeart]

 

 

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.

[pricklypear1971]

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.