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Avatar universal

Why you still don't feel good even with treatment.. Hashimotos!

Tell me what you all think of this information?


If you’ve been diagnosed with hypothyroidism you have a 90% chance of your treatment never allowing you to feel normal.

According to the American endocrine society 80 – 90% of people suffering from hypothyroidism is due to an auto-immune disease called Hashimotos.  

In hashimotos our thyroid has become underactive because the immune system is confused and kills its own thyroid cells, over time you have less thyroid hormones because your immune system is continually killing them and that’s when you start to get the symptoms of hypothyroidism and probably about the time you were diagnosed.

There are 2 very important things to understand about hashimotos:

1.Because it is an immune destruction of your thyroid gland slowly over time you will lose more and more thyroid cells and your dosage will have to be increased to compensate for that loss.

2.The immune process itself blocks the thyroid receptor sites. The way hormones work are they circulate in your blood and attach to cells and create a specific change or response within the cell... With hashimotos disease the immune proteins actually will block those thyroid  receptor sites and the replacement can’t help that.. This is exactly why you still feel symptoms with treatment.. The doctors can measure the amount of thyroid hormone that you have circulating in your blood and that’s exactly what they do when they draw your blood and check your labs.. your TSH, FreeT4, FreeT3 etc.. what it tells them is how much thyroid hormone you have circulating in your blood, and make adjustments to your meds based on those levels, what it doesn’t tell them is the actual response that it creates when It binds to the cells, so your labs may look good after treatment because they ARE in fact giving you hormone supplements to circulate thru your blood stream, but you don’t feel good because the response within the cells is defective, not because you don’t have ENOUGH, not because you have TOO MUCH but because the response within the cells are defective and no amount of synthroid can fix that.. You have to slow down the auto immune attack and decrease the immune proteins that are blocking the receptors…
15 Responses
630135 tn?1241047558
Wow! That is great information. I have not been formally diagnosed with Hashi's as of yet. My TSH levels are in the normal ranges at 1.59 but I am waiting on the TPO antibodies test to see if I have any antibodies in my system. So I assume that if I get my results and there are antibodies present (in a high number) that I will be DX'd with Hashi's.

Thanks for the great info!
Hope eveyone has a great weekend!!

Lisa :o)
649848 tn?1534637300
COMMUNITY LEADER
That's why we tell people that Hashi is treated the same as hypothyroidism, but is harder to control.............That's also why it takes longer to feel better because the antibodies are still working on your thyroid and must get it completely destroyed and go into remission.  

In spite of what you've read on here recently -- no amount of synthroid, or other thyroid med is going to control the antibodies -- they have to finish doing what they do best (killing the thyroid) before you will be able to stay on a relatively even keel and even then, you will need adjustments in your med now and then.  

I think we have to get to the point where we can somewhat accept what is happening to us and be able to "go with the flow"/"ride the tide", etc sometimes.  We are going to go up and down, over and around, under and sideways, before we level off.  None of it is "fun" by any means -- we all know this -- the thing is: stressing about it so much seems to make it worse.  

The med will get your thyroid levels back to "normal" and if you are patient, you should start feeling BETTER, even though it may take a long time before you think you feel the best you can feel -- personally, I've felt so cr@ppy for so long, that I doubt I'll ever feel as well as I *think* I should, but when I look at the overall picture, I feel so much better than I did even a few months ago.  I went through my 30's, 40's and most of my 50's with undiagnosed pernicious anemia and (I suspect) thyroid issues, that absolutely ANYTHING has to be better than that -- now I have to take into consideration that I turned 60 this year, so that fact alone tells me that I should be going down hill ---------- I'm not satisfied with that.. because I now feel better than I did 10 yrs ago........

There ARE some things that may control the symptoms of Hashi's, such as possible diet changes, vitamins/minerals, etc.  That's about all we can do: try to control the symptoms...........until the dear, darling "butterfly" in our throat decides to "fly" away.  Just keep in mind that what works for one, might not work for another...........

I'm not saying that this isn't serious, I'm simply saying that we sometimes have to stop and put things in perspective again.  And trust me --- stress will make it worse.  

Avatar universal
I don't think the 90% chance of never feeling "normal" is true at all.  I think 90% can feel "normal" if that is defined as symptom-free.  It's just a difficult process, little understood by both patients and doctors, and too often abandoned before treatment is finished, leaving people hypo.  HOWEVER, I think this is a travesty, and most, if not all, people can get back to "normal" with proper treatment.

Hashi's is the most prevalent cause of hypo in the U.S.

"In hashimotos our thyroid has become underactive because the immune system is confused and kills its own thyroid cells, over time you have less thyroid hormones because your immune system is continually killing them and that’s when you start to get the symptoms of hypothyroidism and probably about the time you were diagnosed."  I agree completely...although diagnosis is often delayed.

I agree with #1.

#2 is a bit more complicated.  It's true that TSH, FT3 and FT4 do not tell you what's going on at a cellular level.  There is a condition called RTH (resistance to thyroid hormone) that inhibits use of T3 and T4 at a cellular level.  It is EXTREMELY rare and genetic. People who have this have to get FT3 and FT4 levels way over the top of the range to relieve symptoms.  I'd be interested in reading your source for this...do you have a link?  I still maintain that you do not feel symptoms if you are treated properly.  The problem is that once patients are "within range", most doctors think they're "done"...go home, eat less, exercise more, you're symptoms are no longer thyroid related.  Wrong!  Unfortunately, there is no way to stop the autoimmune attack until the thyroid function is destroyed.  

Please post the link if you have it.
Avatar universal
I found this information from a website about Dr. Robert Boydston, a Hashimoto's Expert in Fresno, CA.

I"m doing research to understand this diagnosis better.

In my opinion i believe the body has a miraculous healing ability, i refuse to accept a diagnosis that

1. I was never tested for antibodies and was given a cookie cutter treatment and diagnosis.

2. Has a genentic predisposition when nobody in my family has any type of autoimmune disease.

and

3. a disease that doctors dismiss further treatment for as long as you are "in range" on lab reports but don't even care how you actually feel. What kind of doctor does that? aren't they in the profession to HELP people?


It completely astounds me at how dismissive doctors are about this disease.. If there is anything else wrong with you then they are willing to do what is necessary to treat you, to answer questions, to do tests to diagnose you and come up with a treatment plan for successfully treating your disease and your symptoms so why as it pertains to this particular disease do they look at us suffering with this as overweight, hypochondriacs with nothing better to do then complain about symptoms that obviously have nothing to do with our disease because we are afterall "within range" and i by the way am not even overweight..

But I REFUSE to accept this type of treatment.... and i REFUSE to accept to wake up every day and risk the quality of my life based on a doctors advise to treat something they obviously  don't understand or even want to take the time to understand.

I have been through 4 endocrinologists and they all are the same, cookie cutter diagnosis and treatment minded, your levels are within range, shut your mouth, take your synthroid and go see other specialists to diagnose your high cholesterol, gastro intestinal, physical therapist, gynecologist and psychiatrist and LEAVE ME THE HE!! ALONE because it's NOT your thyroid.. The poor ignorant Endocrinologist who don't even give a **** anyway...

I want answers... not just for myself but for ALL OF US... I'm sick and tired of being sick and tired and i will not be 20 years from now complaining of the same things i am today.. I REFUSE to accept this as "as good as it gets" some days are better than others and just accept it attitude, not me... i WILL beat this and I WILL feel better..
649848 tn?1534637300
COMMUNITY LEADER
We're all "sick and tired of being sick and tired"............Hashimoto's is the main cause of hypothyroidism; therefore a lot of doctors "assume" that's the cause - I'm not saying that's right -- just the way it is.  

You can have a "genetic predisposition when nobody in my family has any type of autoimmune disease".

I have a son who was diagnosed at the age of 10 with Type I diabetes (autoimmune) -- that's "genetic disposition", yet no one in either MY or my husband's families had EVER had it (or any other autoimmune)...........That was in 1982 when he was dx'd and over a period of 20 yrs, no one else in either of our families had a problem ------- however, in the past 5 years, I've had a nephew (older than my son) and a sister (in her 70's) dx'd with Type I diabetes.  In addition, I have a sister (62) with Hashi, dx'd just a few months before I was in 2008; I've been dx'd with pernicious anemia (another autoimmune), plus Hashi -- all this in the past 5 years and the youngest of all is my son who was dx'd at the age of 10 --- he's now 37......genetic disposition --- I'm thinkin so.........

This is not the only disease that doctors dismiss if you are 'in range'..........."What kind of doctor does that? aren't they in the profession to HELP people?"  Yes, they are supposed to be in the profession to HELP people, but a lot of doctors dismiss things if you are in range (and I've even had some out of range dismissed), because that's what the insurance companies pay them to do...the less treatment they do for you, the less expensive it will be --- and it's likely only going to get worse with the new heath care issues in front of congress.........

you have only been dx'd a short time ago and haven't really been on med long enough for it to do a lot.  I know it's hard, but I have to say "patience, patience and more patience".  It's not easy, but that's what it takes.  It has to go slow and easy or it will actually take longer to get to feeling better.......

Avatar universal
I was diagnosed and have been on treatment for 3 years.... I think that is a long enough time to give these doctors to figure things out for me.. Same treatment for a 3 year period  + same results = INSANITY.. In my opinion...
649848 tn?1534637300
COMMUNITY LEADER
I'm sorry, I thought from your earlier posts that you had been recently dx'd......my mistake is acknowledged...........

I still stand by what I said about the autoimmunes -- you don't have to have it in the family to get it yourself.  My son is a prime example, as am I.  

There are a lot of things in the medical community that are an outrage these days  --- I hope you have better luck changing them than some of us have had.............
Avatar universal
For the past two days I've felt awesome! I didn't even need a nap today - the first time in months! My thyroid area and overall health feel much better, but the joints are still aching.

That being said, fingers crossed, that tomorrow... and the next...and the next days I make more improvements. I have been doing better overall since my last med increase. I realize that I will still have some off days with antibody attacks, but even those off days are way better now that I'm on hormone replacement.

Also, I read on this forum that some women use those Ionic foot patches. I ordered some and used my first last night. My pads were black this morning. I am wondering if that's why I've had so much energy today. No racing heart or hyper symptoms - just energy.

Weird.

I am also researching the Marshall protocol and the Jernigan products and I'm considering trying one of these treatments, because I still believe there has to be a better way to treat Hashi by treating the cause and not just the symptoms. After all, if we Hashis listened to everything doctors told us, none of us would know we have Hashi. We would all still think our depression is making us tired and constipated.


:) Tamra
Avatar universal
i'm sorry you all.. I'm just really frustrated, I know that we all are.. There are so many things going on with my life right now.. I have a new baby, my marriage is in bad trouble, and in addition i'm dealing with this thyroid stuff... I don't mean to sound like a horrible person.. I'm really a good person, i have a big heart and i genuinely care about people.. I'm just under a lot of stress right now and i'm tired of feeling bad.. I feel like if i felt better "health wise" then i would be better prepared to be a mother to my son, and have the strength to face the problems of my marriage..

I'm 37 years old and i feel like i'm 60.. I feel like my entire life has passed me by and i haven't found my purpose for living, i'm scared the next 37 years is going to fly by just like the last 37 years and i'm not going to be any further in my life fulfillment or satisfaction or quality of life.. I"m scared of so many things and i don't know how to stop time so i can fix it before it's too late :(
798555 tn?1292791151
I am 42 and was treated for ten years on T4, and felt like cr#p. So I found a different doc that would try a different med.  I told him what I wanted. When I ask for things they wont do it. So I have to tell them what to do, as I am also fed up with the 'system'. Now I feel better but not 100%.

I feel cheated and want those ten years back! As a very good athlete back then, I still had some things to prove then Hoshis decided that was not going to happen. Now age has caught up and athletically I will never be the same.100% healed would be nice, and to be a millionaire would be nice too! At only 42 I already have known people that died younger than my age, we are still alive.

This web site has more info on it than 99% of the docs know. You may find the answer here. And you might have something in addition to Hoshis which complicates it. A lot of people here that still have symptoms need to learn how to diagnose themselves it seems. That means trying one thing at a time. And a lot of waiting.
Avatar universal
i'd like to be a millionaire too :) maybe we can come up with a cure for hashimotos and we can be millionaires because of it haha.. although it wouldn't give us our youth back.. but hey we would have the money to live like we were young :) but hey we are still young and have lots of life ahead of us.....
649848 tn?1534637300
COMMUNITY LEADER
I'm very sorry to hear about your marital problems and of course, having a new baby puts a lot of extra stress on even the most healthy people.  

I don't remember if you've posted your most recent labs or not -- a little bit of Hashi brain fog, I think....

I will say one thing though -- I've been pretty much sick and tired since I was in my 20's -- talk about missing out on life!!  I am pretty sure that I was bouncing between hypER and hypO most of those years, plus I had untreated pernicious anemia. I was just started on B12 shots to treat the pernicious anemia in 2007 and dx'd hypo in May 2008; Hashi not until Nov 2008 and I swear the doc was trying to kill me at first ---------lol  I'm finally on med that's working and beginning to feel better, though I am still very tired most of the time and not getting rid of any weight -- in fact, I've actually gained some over the past week!!   I just turned 60 in June, so the years are flying by, but I'm not content to sit back and worry about what I've lost - that takes energy that I don't have to spare.  Time is flying by and I have to do what I can to enjoy what I've got left.  

I hope you get to feeling better soon.  But don't forget that stress makes Hashi much worse.  

Avatar universal
Thank you for your support and encouragement..

I agree that we have to try and enjoy the life we have left and not worry about what we've lost "not much we can do about now" :) but i am sorry that you've had to suffer for so long, I couldn't imagine... I"m glad things are getting better for you now :)

As far as my recent labs, I'm the one who got yanked off my meds because my doc thought i was hyper due to post partum thyroiditis.. Now i'm trying to get back on meds after only 3 weeks of being off them.

At the time my doc yanked me my levels were:
TSH - .009 (0.34 - 5.0)
FT3 - 3.44 (2.3 - 4.2)
FT4 - 1.29 (0.9 - 1.8)
I felt HORRIBLE..I couldn't get out of bed..

3 weeks later my levels were:
TSH - 102 (0.34 - 5.0)
FT3 - 1.98 (2.3 - 4.2)
FT4 - 0.17 (0.9 - 1.8)
I felt BETTER with these labs haha.. but was still tired.. obviously though i needed my meds again and this was 2 weeks ago..

Today is Day 9 on Synthroid 88mcg and i'm feeling better today.. I'm just taking one day at a time though, actually one minute at a time because my symptoms seem to change with the wind.. :)




798555 tn?1292791151
Your lab results look like the roller coaster ride from he// !

When I switched types of meds, (learned you have to be very carefull doing this) I went from lazy to shaking like a meth addict. And then had to start all over from a purposely induced hypo state. The roller coster ride really bites!
Avatar universal
I'm going to be 59 on my next birthday, later this year.  Not much cushion left between me and the big six-o!  The up side?  Social security just two years away!

I was diagnosed hypo two years ago this coming December.  I didn't get the Hashi diagnosis until I started seeing an endo last January.  I have to say that I am one of the "lucky" people...I'm very comfortable with my FT3 and FT4 very low in the range.  In fact, as long as they're "in" range, I'm happy.  In retrospect, I think I've probably been slightly hypo, or at least borderline, most of my life. Within three months of starting levo, and on 25 mcg at the time, all my symptoms had gone away and I had lost 25 lbs.  

Unfortunately, I got not one, but two, doctors who wanted to "nudge my numbers up in the range".  Anyone else would kill for one of these guys, but it was torture for me because I'm very sensitive to levo and have a congenital heart defect that causes tachycardia, and the levo wrought havoc with that.  I should say that all this was complicated by the fact that my FT3 and FT4 were low in range, and my TSH hovered around 20!

After I finally went a bit hyper for a few weeks when my endo attempted and increase from 75 to 81.5 (yeah, 6.5 mcg!), I was diagnosed with pituitary resistance to thyroid hormone (PRTH).  My pituitary lacks the enzyme that converts T4 to T3.  Since it isn't getting any T3, it assumes the rest of my body isn't either, which is not true, and keeps cranking out TSH.  So, in my case, TSH has to be totally ignored.

I feel like I have gotten my life back.  100%?  No, but maybe 95%.  Back when my endo was still trying to increase my dose, I kept telling him that I felt fine.  Could I feel better?  How can you answer that?  What I told him was that if I did feel better, it would have to be on the order of "OMG, I never realized a person could feel this good" or "wow, I'm 20 again".

Anyway, my point is that we are all very different, we all have to find the levels at which we feel best, and we all have to find the meds that work best for us.  Sometimes, we have to add another med to control the effects of the first.  I hate this more than I can express.  For me, T3 meds are not on the table because of the heart defect.  So, I had to work with T4, I had to add a beta blocker to control the tachy, I had to increase in baby steps.  Now I take 75 mcg, which has been stable since January, except for my brief foray to 81.5, I'm still feeling good, and my labs are very stable.

So hang in there, kids.  Look forward, not backward.  As Barb said, that's a total waste of energy.  You've got years ahead of you, you will figure this thing out.  Life is going to keep handing you little challenges...the older you get, the more frequent they become.  You have to adapt, and you have to have patience.  Best of luck to you both.    
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649848 tn?1534637300
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