# new!!!



## texgal418 (Jan 28, 2010)

Hello all,
I have followed your sage advice (particularly Andros) and kindness to fellow sufferers for a while and decided I'd love to actually jump in and ask some questions. I was diagnosed hashi's in 1985 after thinking I was losing my mind. (you know the drill....anxiety attacks, feeling detached from my body, diarhea, then swinging to no energy, etc...the whole hypo thing) Everyone said there was nothing wrong with me, short of being totally off my rocker, until an endo finally did the antibody test and diagnosed hashi's. I have struggled off and on with this for my whole life, but managed. It is partly my fault because I had lost faith in the medical field, and just let my GP prescribe without checking my levels very often. I am currentyly on 100 mcgs synthroid...probably could use more, but all in all, I feel OK.

Flash forward to 3 months ago. My 23 year old daughter has just about every symptom of hypo. Praise God we found a good doc (NP) who has titrated her to 75 mcg synthroid so far (started with 50). The next blood test will be in early March. (8 weeks after starting the 75). She has been on the 75 for almost 4 weeks now. He says he will check to see if she looks like she is converting to T3 in her next test, and he is pretty sure that 75 is not her optimum dosage. He does prescribe dessicated, but with the shortage, he wanted to try this first, adding the synthetic T3 if needed.

We are disappointed, though, because she is not much better. She has had to quit her job and school as she can barely get out of bed. Mostly she stays with her dad and me in her pajamas. She was to have been married last week end, but postponed the wedding. I don't even think she cares because she feels so bad. I've seen a little improvement in her edema, and there is a very rare burst of productivity, but mostly she is physically and emotionally worn out. There is some depression too...but who wouldn't be depressed...a beautiful 23 year old with no life.
Questions: Is it too soon to see more improvement? Is this a sign that she is probably not converting? I hate to be impatient, but it seems like I'm the only one who doesn't think she is just crazy.

Sorry this is so long...again I can't tell you how much this forum has helped me. In 1985, all we had were uninformed docs and an occasional medical book. God bless you all!
Thank you for your time!
Jeanie


----------



## Andros (Aug 26, 2009)

texgal418 said:


> Hello all,
> I have followed your sage advice (particularly Andros) and kindness to fellow sufferers for a while and decided I'd love to actually jump in and ask some questions. I was diagnosed hashi's in 1985 after thinking I was losing my mind. (you know the drill....anxiety attacks, feeling detached from my body, diarhea, then swinging to no energy, etc...the whole hypo thing) Everyone said there was nothing wrong with me, short of being totally off my rocker, until an endo finally did the antibody test and diagnosed hashi's. I have struggled off and on with this for my whole life, but managed. It is partly my fault because I had lost faith in the medical field, and just let my GP prescribe without checking my levels very often. I am currentyly on 100 mcgs synthroid...probably could use more, but all in all, I feel OK.
> 
> Flash forward to 3 months ago. My 23 year old daughter has just about every symptom of hypo. Praise God we found a good doc (NP) who has titrated her to 75 mcg synthroid so far (started with 50). The next blood test will be in early March. (8 weeks after starting the 75). She has been on the 75 for almost 4 weeks now. He says he will check to see if she looks like she is converting to T3 in her next test, and he is pretty sure that 75 is not her optimum dosage. He does prescribe dessicated, but with the shortage, he wanted to try this first, adding the synthetic T3 if needed.
> ...


Hey Jeanie and I am glad you are posting. Oh, bummer!! Well, it could be she is not converting but only a FREE T3 test would tell. Also, it could be to early in the game for the titration process sometimes takes the patient to all the places they don't want to go. Titration is like climbing a ladder one rung at a time and you are not happy (feeling well) until you reach the top.

Also, what antibodies were run on your daughter? I recommend the following...........

TSH, FREE T3, FREE T4, TPO (antimicrosomal antibodies), ANA (antinuclear antibodies), TSI (thyroid stimulating immunoglobulin) and Thyroglobulin Ab as well as thyroid binding inhibitory immunoglobulins (TBII.)

You can look all of the above up here so you know what they are for........
http://www.labtestsonline.org/

Would also suggest a ferritin test for low iron stores are common in patients with TD and also common in young females. A double whammy, you might say.

If you can, post your daughter's test results and ranges so we can have a looksee! We need the ranges as different labs use different ranges.

Also, the same for you if you have current labs and ranges. Feeling okay is, well okay! But, you should be feeling terrific. You sound like you might be in your 40's?

Yes; thousands of us are being left high and dry w/o dessicated porcine thyroid. It is a huge mess.

For now, I am wimping along w/ the addition of a "tiny" bit of Cytomel (Synthethic T3.)


----------



## chopper (Mar 4, 2007)

That just stinks. Sorry. I hate hearing about that. I know how I feel at 39 and am thankful I "fell apart" no younger than 32.

Perhaps surgery is the answer. Why suffer?

If I had to do it all over again and knew I would spend the next 8+ years dealing with all kinds of junk, I would have just had this thing cut out of my neck. At 23, she needs to get on a fast track. She doesn't want to miss the very best years of her life due to a defective thyroid.


----------



## texgal418 (Jan 28, 2010)

These tests were ordered by another doctor in November. She had an ANA that said slightly elevated and I'm not sure about the tests for the antibodies...done seperately, and I can't find them right now. This NP is very cool with his statistics. He takes the LABCORP ranges and converts them in his own computer to compare the patient statistically with others in her demographic group. (sex, age, history) He is awesome. He did not order these tests, but,along with her symptoms, he said they were enough to know that she needed help. He will do his own testing in March.

T-3 Uptake 29 (30-35)

Total T4 9.6 (10-13)

Free T-4 2.8 (3.5-4.5)

TSH 3.4 (.4-3.0)

The NP knows that he needs to test for frees when she comes in next.
Andros, why do the levels matter for the antibody test? Just curious. Is it not just there or not there. If your levels are high, does that make the disease harder to treat? Also, I am going to ask him about the ferritin for her. And yeah, once I get my kid lined out, I plan on letting this guy "work" on me a bit!!! 
Nasdaqphi, just wondering why surgery would be the answer. Can you give me more details on why you feel that way and what your experience has been? Fortunately, she doesn't have much of a goiter or swelling. I was hoping once her meds got to their optimum level, she would just suppress the thyroid and not have the issues. Please elaborate, because surgery seems a little extreme. She just got diagnosed a month ago. What do you guys think?
Thank you!!!!!


----------



## chopper (Mar 4, 2007)

Uyy...where do I start? I have sort of a unique case. I have very high TSI, indicative of Graves but I also have VERY high antibodies, indicative of Hashi's (thanks mom!) so it took me a REALLY long time to get diagnosed. I "look" hypo but at the same time I am always nervous and hot and jittery feeling and I cycle back and forth all the time very quickly. 50% of my docs told me to take meds and 50% told me it was Graves' - 2 contradictory diagnoses. If I take Synthroid and have Graves, I'll go totally hyper. If I "only" have hashi's and am hypo, then surgery is extreme when I can only take a pill. What I actually have is "Ha****oxicosis" - the trifecta of antibodies. Im still not fixed but as the attacks have killed off parts of my thyroid over the years, I think I am becoming more and more hypo. You can't stay hyper forever - as the thyroid dies off from the constant antibody attacks, eventually the thyroid quits.....just so happens mine was a stubborn SOB. I am going to start Synthroid soon and hope for the best.

I said to just get surgery only cause I've been through hell since 2002 and missed a good chunk of life as a result. If I were to do it all over again, I, like my mother, would just rip the sucker out and not have to deal with it forever but that's just my opinion. Each case is very different and yes, surgery is extreme.

My mother was fortunate enough to have a doctor that ripped her thyroid out prematurely in my opinion due to hashi's. It turns out she was fortunate because she never had a chance to deal with all the problems. At the time I thought her doctor was a quack for taking such an important gland so quickly after being diagnosed but fast forward 10 or 15 years I now understand how much he actually helped her by doing so. To my mother, it was non-eventful. She had hashi's, her gland was removed and she never had a chance to feel crummy. I prolonged everything and have been dealing with it since.

Everyone's got to make their own decisions...it's an important one. There are risks to surgery too of course. In the end its your daughter's decision to make.


----------



## texgal418 (Jan 28, 2010)

Thank you for your frankness, nasdaqphil! It sounds like you had a very difficult case. Thank is funny that you said "thanks Mom", because my mom has this too and now I have shared it with my kid. I knew my daughter was with the wrong doc (chiropractor) back in October when we began to suspect thyroid and she told her that she did not believe in hereditary illness. Seriously????
Thanks again for your story.
Jeanie


----------



## chopper (Mar 4, 2007)

Not herditary??? That's insane.

How many MEN actually have Graves' Disease yet aside from my mom, my Uncle (mom's brother) just got diagnosed with full blown Graves'.

I guess I should have said 'thanks Grandma or Grandpa' Ironically, however, neither my grandma or grandpa were ever diagnosed with anything but I believe from what I remember of him, my grandpa had Graves' too but drank himself to death before he was able to get a proper diagnosis - drinking to probably cover up the Graves. I was really young when he died but I remember "big eyes" and him being really, really thin and shaky....always thought it was from the booze....perhaps not.


----------



## Andros (Aug 26, 2009)

texgal418 said:


> These tests were ordered by another doctor in November. She had an ANA that said slightly elevated and I'm not sure about the tests for the antibodies...done seperately, and I can't find them right now. This NP is very cool with his statistics. He takes the LABCORP ranges and converts them in his own computer to compare the patient statistically with others in her demographic group. (sex, age, history) He is awesome. He did not order these tests, but,along with her symptoms, he said they were enough to know that she needed help. He will do his own testing in March.
> 
> T-3 Uptake 29 (30-35)
> 
> ...


Oh, wow!! Thanks for those lab results and ranges!! T4 and FT4 in the basement? No wonder she can't move. Lord have mercy!!

So, either the thyroid is not producing enough T4 or it is producing and it is converting really really fast to T3. We won't know until doc does the FT3 test.

You are right about the antibodies! But a "baseline" is very very important for that is the best guideline to see if the treatment modality is working. I do not think it makes the disease harder to treat though. The protcul is usually the same. There would be exceptions, of course. Like antibodies indigenous to cancer.........stuff like that.

And of course, when very high, we know the patient is extremely symptomatic and something must be done STAT. It is also important to know whether the disease is autoimmune in nature for a myriad of reasons including whether to pass those genes on to future generations or not.

At this point, I also suspect your daughter may also have adrenal fatique.

Here is info on that...

http://www.drrind.com/therapies/metabolic-therapy


----------



## texgal418 (Jan 28, 2010)

Wow, that link is awesome...very informative. It kind of explains why most docs are totally clueless in how to treat. Thyroidology could be its own sub-specialty!! I guess there is a long road ahead for my girl. I can't wait to see what her March tests look like. All I can do is encourage her that she will get better....just not tomorrow. In the meantime, thanks to you all. The internet is just the coolest thing.....don't know how folks lived without it!


----------



## Andros (Aug 26, 2009)

nasdaqphil said:


> Not herditary??? That's insane.
> 
> How many MEN actually have Graves' Disease yet aside from my mom, my Uncle (mom's brother) just got diagnosed with full blown Graves'.
> 
> I guess I should have said 'thanks Grandma or Grandpa' Ironically, however, neither my grandma or grandpa were ever diagnosed with anything but I believe from what I remember of him, my grandpa had Graves' too but drank himself to death before he was able to get a proper diagnosis - drinking to probably cover up the Graves. I was really young when he died but I remember "big eyes" and him being really, really thin and shaky....always thought it was from the booze....perhaps not.


You got it. My grandparents and some uncles and aunts the same. Big boozers but now when I look back, there is absolutely no question in my mind but what they had Graves'!

In those days, either medical care was not available, they also did not know much about thyroid and so it goes. Too bad. It is instinctive to self-medicate and alcohol as well as cigarettes do do that.

Those poor souls. And we complain. LOL!! We have the best of everything available to us today.

Granted, there could be improvements and as a society we have a lot of problems but................??? We do have it a whole lot better than the grand parents and the great grands.


----------



## Andros (Aug 26, 2009)

texgal418 said:


> Wow, that link is awesome...very informative. It kind of explains why most docs are totally clueless in how to treat. Thyroidology could be its own sub-specialty!! I guess there is a long road ahead for my girl. I can't wait to see what her March tests look like. All I can do is encourage her that she will get better....just not tomorrow. In the meantime, thanks to you all. The internet is just the coolest thing.....don't know how folks lived without it!


I agree; the internet "is" very cool. This 67 year old loves it. Ha, ha!!

And, you are most welcome. I love Dr. Rind. He is one smart cookie!


----------

