# Another newby!



## StaciB (Feb 4, 2010)

Hi to all, I am new here and am hoping I can share my experiences and receive some info in regard to Hashi's, hypothyroidism and goiters (I have been diagnosed with these 3 things). I have been hypo for about 10 years, and diagnosed with Hashi's and a very large goiter about 2 years ago. I am taking .125mcg Synthroid and most recently, with in the past 4 months have gained about 35 lbs :sad0047::aim33:! I workout 6 x a week for about 45-60 minutes (treadmill;walk/jog, cardio based DVD's, pilates and weight training) and eat 5 times a day at about 300 clean calories per meal, totaling approx. 1400 calories and I CANNOT lose a pound!!! Since my medication was increased (from .100mcg to .125mcg) I have pretty much stopped gaining but can't lose either. About 5 years ago I was treating with a different Endo (I have moved very far and cannot use him anymore) and he had given me Synthroid with a "sidecar" of Cytomel and at the time I was able to lose 60 lbs., it took great effort but I saw results. This new dr. will not give me Cytomel in addition to the Synthroid. In addition, I am still ALWAYS tired and fatigued, very depressed, have brain fog, am grumpy, dry skin and hair, high blood pressure and cholesterol and most recently have been getting hives every morning when I wake up. I am just SO disgusted, I feel as though the dr. should be doing more and I can't believe that having these issues really seems to be running/ruining my life. I just got married a year ago and feel like my poor husband is constantly hearing me complain. I never want to even leave the house and my libido is in the potty!!! 
Does anyone have any advice on how to proceed?
I thank you in advance for any advice!


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## Andros (Aug 26, 2009)

StaciB said:


> Hi to all, I am new here and am hoping I can share my experiences and receive some info in regard to Hashi's, hypothyroidism and goiters (I have been diagnosed with these 3 things). I have been hypo for about 10 years, and diagnosed with Hashi's and a very large goiter about 2 years ago. I am taking .125mcg Synthroid and most recently, with in the past 4 months have gained about 35 lbs :sad0047::aim33:! I workout 6 x a week for about 45-60 minutes (treadmill;walk/jog, cardio based DVD's, pilates and weight training) and eat 5 times a day at about 300 clean calories per meal, totaling approx. 1400 calories and I CANNOT lose a pound!!! Since my medication was increased (from .100mcg to .125mcg) I have pretty much stopped gaining but can't lose either. About 5 years ago I was treating with a different Endo (I have moved very far and cannot use him anymore) and he had given me Synthroid with a "sidecar" of Cytomel and at the time I was able to lose 60 lbs., it took great effort but I saw results. This new dr. will not give me Cytomel in addition to the Synthroid. In addition, I am still ALWAYS tired and fatigued, very depressed, have brain fog, am grumpy, dry skin and hair, high blood pressure and cholesterol and most recently have been getting hives every morning when I wake up. I am just SO disgusted, I feel as though the dr. should be doing more and I can't believe that having these issues really seems to be running/ruining my life. I just got married a year ago and feel like my poor husband is constantly hearing me complain. I never want to even leave the house and my libido is in the potty!!!
> Does anyone have any advice on how to proceed?
> I thank you in advance for any advice!


Ah, StacieB! Once again, welcome.

Oh, you need that sidecar. Clearly you are not converting your T4 to T3 in sufficient amounts. I "suppose" this doc won't run a Free T3 test either, will he?

I most definitely would find a doctor who is willing to think outside the box on your behalf. As you see in my siggie, I am on a "bit" of Cytomel. I am about to run out of my precious Armour so we are "supplementing" and I don't know what approach we will use if Armour doesn't hurry up and get the product back on the market. (Armour is dessicated porcine thyroid w/ T4 and T3 and perhaps even a tiny bit of T1 and T2.)

Anyway, I would not stand for it. There has got to be a doc in your area who will be amenable. Even if you have to go to a DO, Holistic practitioner or whatever it takes.

It is unconscionable to keep you feeling and looking unwell.


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## StaciB (Feb 4, 2010)

Andros said:


> Ah, StacieB! Once again, welcome.
> 
> Oh, you need that sidecar. Clearly you are not converting your T4 to T3 in sufficient amounts. I "suppose" this doc won't run a Free T3 test either, will he?
> 
> ...


Andros,
Thanks for the reply....I am calling the Endo tomorrow to see if I can get an appointment before my 3 month follow up (which is and of March). I was reading about Armour and Thylor in comparison to Synthroid and am going to ask about that as well. I saw that the Armour is still in back order in many places....my luck my Endo will think that's a good idea and I won't be able to get it! Haha I don't believe A Free T3 test has been done, this doctor does not think outside of the box, I need that. I need a doctor who REALLY hears me and doesn't treat me from a generic playbook. Thia is my third Endo in 2 years, because of this very reason, they all don't seem to care about much more than making sure they have your current insurance and your copay! I am so frustrated. HOWEVER...I am so happy I found this forum and know for a fact that I am NOT the only one going thru this and my symptoms aren't unique and not all in my head!! Thanks again!


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## Andros (Aug 26, 2009)

StaciB said:


> Andros,
> Thanks for the reply....I am calling the Endo tomorrow to see if I can get an appointment before my 3 month follow up (which is and of March). I was reading about Armour and Thylor in comparison to Synthroid and am going to ask about that as well. I saw that the Armour is still in back order in many places....my luck my Endo will think that's a good idea and I won't be able to get it! Haha I don't believe A Free T3 test has been done, this doctor does not think outside of the box, I need that. I need a doctor who REALLY hears me and doesn't treat me from a generic playbook. Thia is my third Endo in 2 years, because of this very reason, they all don't seem to care about much more than making sure they have your current insurance and your copay! I am so frustrated. HOWEVER...I am so happy I found this forum and know for a fact that I am NOT the only one going thru this and my symptoms aren't unique and not all in my head!! Thanks again!


Let us know about the Free T3. You may be forced to use LabQuest and pay out of pocket.

I did much better w/o insurance all my entire life. Now that I am on Medicare, I could pull my hair out. They want to do everything you can think of that is not in any way relevant to my heath issues. I won't let them; I am not a sheep and I won't abuse the system. Needless to say, I am knocking some heads with some doctors.

Glad to hear you are a fighter; you need to be!! Kick some butt.


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## StaciB (Feb 4, 2010)

Andros said:


> Let us know about the Free T3. You may be forced to use LabQuest and pay out of pocket.
> 
> I did much better w/o insurance all my entire life. Now that I am on Medicare, I could pull my hair out. They want to do everything you can think of that is not in any way relevant to my heath issues. I won't let them; I am not a sheep and I won't abuse the system. Needless to say, I am knocking some heads with some doctors.
> 
> Glad to hear you are a fighter; you need to be!! Kick some butt.


I spoke to my Endo today, (after both my husband and I called his office 3x each), his nurse finally put him on at my 4th call. I explained that I am still having symptoms; bad fatigue, depression, always tired, not sleeping well, miserable, blah, blah, blah, oh and new is hives and an aching in my jaw/neck...his immediate response, "well, your TSH was in the normalish range last blood work (November)"I asked for a Free T3, answer, "not necessary". I asked about Armour and Thyroar, answer, ", I do not do that and you will be hard pressed to find an Endo who will prescribe that" in regard to Cytomel, the answer, "it is not a practice of the Endocrine society to give a T3 and T4, it is either, or." In addition to all this crap (pardon) he also told me this is just my body, my situation is hereditary, and I need to eat even less and exercise alot more! My responses; noone else in my family has any type of thyroid disease, and so I should eat say, 600-800 calories a day and exercise for 4-5 hours/day?! And these are the hilites!! lol After much more back and forth, he agreed to run a full blood panel and is going to do an adreanal test ( I take Dexamethasone before bed and have blood drawn in early am). My questions to anyone who may know, what blood tests should I make certain are on the list and has anyone else had adreanal testing done? If told you have a "remarkably" large goiter, how often should an ultrasound be performed? Do goiters cause jaw/neck aching/pain? and lastly (and this one is funny), has anyone else experienced this sort of resistance or comments from an Endo? 
As always, any help/guidance anyone can provide is greatly appreciated!!
Sorry this was so long! :anim_03:


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## Andros (Aug 26, 2009)

StaciB said:


> I spoke to my Endo today, (after both my husband and I called his office 3x each), his nurse finally put him on at my 4th call. I explained that I am still having symptoms; bad fatigue, depression, always tired, not sleeping well, miserable, blah, blah, blah, oh and new is hives and an aching in my jaw/neck...his immediate response, "well, your TSH was in the normalish range last blood work (November)"I asked for a Free T3, answer, "not necessary". I asked about Armour and Thyroar, answer, ", I do not do that and you will be hard pressed to find an Endo who will prescribe that" in regard to Cytomel, the answer, "it is not a practice of the Endocrine society to give a T3 and T4, it is either, or." In addition to all this crap (pardon) he also told me this is just my body, my situation is hereditary, and I need to eat even less and exercise alot more! My responses; noone else in my family has any type of thyroid disease, and so I should eat say, 600-800 calories a day and exercise for 4-5 hours/day?! And these are the hilites!! lol After much more back and forth, he agreed to run a full blood panel and is going to do an adreanal test ( I take Dexamethasone before bed and have blood drawn in early am). My questions to anyone who may know, what blood tests should I make certain are on the list and has anyone else had adreanal testing done? If told you have a "remarkably" large goiter, how often should an ultrasound be performed? Do goiters cause jaw/neck aching/pain? and lastly (and this one is funny), has anyone else experienced this sort of resistance or comments from an Endo?
> As always, any help/guidance anyone can provide is greatly appreciated!!
> Sorry this was so long! :anim_03:


I have never met one that was NOT condescending and narrow-minded. I see a rheumatologist/immunologist. THAT man is dangerous. I hope get these tests which I will copy and paste for you here....

The lab tests listed are helpful when it comes to sorting things out.

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/

It is also unconscienable for him to deny you access to T3 if it turns out you are not converting. So, you will have to go doctor shopping. You could find a DO, a GP or even one like mine. So long as they care about getting you better and think outside the box.

Now...........we are going to bring out the big guns. I am going to suggest to you that you tell this know it all endo that if he does not Rx a radioactive uptake scan for you (and the other tests that you request) and it turns out that you "do" have cancer, you are going to sue everybody's tail off. It is a shame that we who are sick have to resort to such tactics but that is the way it is. Take your husband for back-up and witness. Or your mom or just anybody that is not a wuss.

I am really angry; can you tell? You must get angry also. Even though you are ill and it is not good for you to get upset, you are getting upset anyway so I don't see where it makes a difference at this point.


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## StaciB (Feb 4, 2010)

Andros said:


> I have never met one that was NOT condescending and narrow-minded. I see a rheumatologist/immunologist. THAT man is dangerous. I hope get these tests which I will copy and paste for you here....
> 
> The lab tests listed are helpful when it comes to sorting things out.
> 
> ...


Andros.....again I thank you for the reply! Today is yet another fight...when the Endo's office faxed the blood test order to me, he only requested testing for TSH and Total T4, I called the office back telling his dimwitted receptionist that I want the entire Thyroid panel performed, he and I spoke about this yesterday...I am still awaiting a call back. What is the problem?! My insurance covers the blood work, why would he continue to be so difficult? Ego?
My husband already played the sue your butt off card yesterday, to no avail apparently. At this point I am calling the place that does the bloodwork to see if I can be sent the results as well as them sending to the doctor, in case he is resistant to sending me a copy. 
I am currently doctor shopping once again, it's just so ridiculous...our insurance costs $500+/month, plus $50 co-pays, plus the Rx's...you would think the care would be passable at the least!
I did have other blood work done last week with my Gastrointestinal, and was called and told my iron counts were very low and have to start taking Hemax. 
I am going to do some searching about how this effects hypo, anyone who already knows, please feel free to tell!


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## Andros (Aug 26, 2009)

StaciB said:


> Andros.....again I thank you for the reply! Today is yet another fight...when the Endo's office faxed the blood test order to me, he only requested testing for TSH and Total T4, I called the office back telling his dimwitted receptionist that I want the entire Thyroid panel performed, he and I spoke about this yesterday...I am still awaiting a call back. What is the problem?! My insurance covers the blood work, why would he continue to be so difficult? Ego?
> My husband already played the sue your butt off card yesterday, to no avail apparently. At this point I am calling the place that does the bloodwork to see if I can be sent the results as well as them sending to the doctor, in case he is resistant to sending me a copy.
> I am currently doctor shopping once again, it's just so ridiculous...our insurance costs $500+/month, plus $50 co-pays, plus the Rx's...you would think the care would be passable at the least!
> I did have other blood work done last week with my Gastrointestinal, and was called and told my iron counts were very low and have to start taking Hemax.
> I am going to do some searching about how this effects hypo, anyone who already knows, please feel free to tell!


Oh, if your ferritin is low, it definitely impedes the efficacy of your thyroxine replacement. Ferritin ideally should be 50 to 100 and the close to 100 the better. Here is some info if you like....
http://www.thewayup.com/newsletters/081504.htm

Oh, that dirty rat. He's a yeah, yeah guy and then does what he wants to do. Not good. Yep, you will have to ditch him.

Wonder if the Gastro would know a good thyroid guy or gal? You never know. My Ophthalmologist sent me to my rheumy/immuno lady. She is the best. I have been with her for wow! Since 1996? Or thereabouts.


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## StaciB (Feb 4, 2010)

Andros said:


> Oh, if your ferritin is low, it definitely impedes the efficacy of your thyroxine replacement. Ferritin ideally should be 50 to 100 and the close to 100 the better. Here is some info if you like....
> http://www.thewayup.com/newsletters/081504.htm
> 
> Oh, that dirty rat. He's a yeah, yeah guy and then does what he wants to do. Not good. Yep, you will have to ditch him.
> ...


Andros....you are the best!!!! Thank you so much!
Not to sound all cheesy or gushy but just having this forum gives me a sense of hope and helps so much!!!arty0006:


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## Andros (Aug 26, 2009)

StaciB said:


> Andros....you are the best!!!! Thank you so much!
> Not to sound all cheesy or gushy but just having this forum gives me a sense of hope and helps so much!!!arty0006:


Yes; this is what it is all about. Helping others if we can.

I meant to tell you that yes, a goiter can impinge nerves, can also become inflamed and cause earaches and other spreading pain and can make the jaw hurt. Yes. It can wrap around the esophagus and also cause changes in your voice.

How often should you have a scan? I advise one radioactive uptake scan. That should settle it. Ultra-sound does not pick up smaller nodules which may be cancerous or potentially cancerous.


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## StaciB (Feb 4, 2010)

Andros said:


> Yes; this is what it is all about. Helping others if we can.
> 
> I meant to tell you that yes, a goiter can impinge nerves, can also become inflamed and cause earaches and other spreading pain and can make the jaw hurt. Yes. It can wrap around the esophagus and also cause changes in your voice.
> 
> How often should you have a scan? I advise one radioactive uptake scan. That should settle it. Ultra-sound does not pick up smaller nodules which may be cancerous or potentially cancerous.


Thanks again for the response..........I have been out of commission for about a week, bad cold.
Last week was the last time I left a message for my *EX*-endo! The bottom line was he refused to do the testing I requested and told me what I am feeling has NOTHING to do with my thyroid, what a putz!! So I am now in search of a new doctor who is open minded and would consider treatments other than straight up Synthroid alone. I have been trying to "interview" different doctors, (unfortunately thru their receptionists) to see what their style of treatment is but it is difficult. The real unfortunate thing is how I continue to feel. Last year I didn't have any health insurance and was self medicating, getting generic T4 AND T3 from Europe. Prior to this I was using a T4/T3 combo with my old family doctor (in PA) so I would keep the dosage in the same neighborhood as what he had given me, tweeking it on my own depending on how I felt, not by blood work results. I really don't remember why but around last November I stopped taking everything and in Dec. got insurance and went to see an Endo (in FL), he immediately put me on Synthroid alone, told me about the Hashi's and the goiter (which I already knew I had), he was "ok" but he was a T4 solo kind of doc, and his staff was terrible, you could NEVER get a call back or speak to the doctor, since then I changed to the highly recommended (by my husband's boss's wife) putz.........my whole point here is I was doing SO much better with my old family doctor and then on my own...just looking for an opinion here, if it were you would you continue to weed thru doc after doc to try to find one who really does care and thinks for real and treats more according to how you feel than if your numbers are in "normal" range or treat yourself very carefully? I am really at my wits end and just so tired, in every way.


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## Andros (Aug 26, 2009)

StaciB said:


> Thanks again for the response..........I have been out of commission for about a week, bad cold.
> Last week was the last time I left a message for my *EX*-endo! The bottom line was he refused to do the testing I requested and told me what I am feeling has NOTHING to do with my thyroid, what a putz!! So I am now in search of a new doctor who is open minded and would consider treatments other than straight up Synthroid alone. I have been trying to "interview" different doctors, (unfortunately thru their receptionists) to see what their style of treatment is but it is difficult. The real unfortunate thing is how I continue to feel. Last year I didn't have any health insurance and was self medicating, getting generic T4 AND T3 from Europe. Prior to this I was using a T4/T3 combo with my old family doctor (in PA) so I would keep the dosage in the same neighborhood as what he had given me, tweeking it on my own depending on how I felt, not by blood work results. I really don't remember why but around last November I stopped taking everything and in Dec. got insurance and went to see an Endo (in FL), he immediately put me on Synthroid alone, told me about the Hashi's and the goiter (which I already knew I had), he was "ok" but he was a T4 solo kind of doc, and his staff was terrible, you could NEVER get a call back or speak to the doctor, since then I changed to the highly recommended (by my husband's boss's wife) putz.........my whole point here is I was doing SO much better with my old family doctor and then on my own...just looking for an opinion here, if it were you would you continue to weed thru doc after doc to try to find one who really does care and thinks for real and treats more according to how you feel than if your numbers are in "normal" range or treat yourself very carefully? I am really at my wits end and just so tired, in every way.


Honey bunny! I had the same problem and so have others here. I went through every Endo in the Atlanta Metro Area. I was so so discouraged. Finally my eye doctor sent me to a rheumatologist friend of his and help was on the way.

So, look at DO, Rheumatologist, Internal Medicine and GP. I hope and pray you find someone.

The real reason above all others for the radioactive uptake scan is to make sure you don't have cancer. I sure would mention the "C" word to this endo.

Dang!


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## jessica (Feb 8, 2010)

StaciB i feel like i'm listening to myself when i read your posts!

Sorry to hear that you have so much going on. I am awaiting an appointment w/my endo (1st appt) and I'm worried b/c I spend more time arguing w/my PCP then getting answers, and going to this new doc...a little worried I may not get anywhere.

I ran across a website - http://thyroid.com/index.html - & the doctor at this cancer center actually does "phone consults". so...i tried it out. He called me back shortly after leaving the message, and I told him I was running a few more tests that day. He told me once I received all of my results to fax them to him and he would call back w/as much advice as he could offer!!!

I saw you have been on medication...i'm on the wait & see approach...but i was wondering if you had advice on meds (types, strengths, etc.) b/c i may have to force it down my PCP's throat! I'll take your approach....i'll call over & over! lol

hope things get better! Keep us up to date!


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## StaciB (Feb 4, 2010)

Andros said:


> Honey bunny! I had the same problem and so have others here. I went through every Endo in the Atlanta Metro Area. I was so so discouraged. Finally my eye doctor sent me to a rheumatologist friend of his and help was on the way.
> 
> So, look at DO, Rheumatologist, Internal Medicine and GP. I hope and pray you find someone.
> 
> ...


I have a call in to my Gastro doc to see if he can recommend anyone and am looking for a Rheumatologist as well, I also have a call into my old family doc to see if he has any advice. I am also kind of in a little of a limbo state, my husband's company is in the process of changing insurance carriers and I don't know who is on what as far as docs are concerned. Honestly, lately I am just so tired and have such bad brain fog I don't even care. Next week will be better (I just hafta believe that!) Hope everyone has a really nice weekend!!!


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## StaciB (Feb 4, 2010)

jessica said:


> StaciB i feel like i'm listening to myself when i read your posts!
> 
> Sorry to hear that you have so much going on. I am awaiting an appointment w/my endo (1st appt) and I'm worried b/c I spend more time arguing w/my PCP then getting answers, and going to this new doc...a little worried I may not get anywhere.
> 
> ...


Jessica, 
While I appreciate the empathy, I am am sorry that you do know exactly how I feel!! lol I am going to try the phone consult too, can't hurt. In regard to meds, I am on .125mcg Synthroid only. It seemed to have made some symptoms go away for about a month but now they are all back in force!! Especially the brain fog, forgetfulness and being tired and fatigued. It's so ridiculous, even typing this is an effort for my brain, it really makes me cry! http://www.thyroidboards.com/images/smilies/anim_03.gif:anim_03: Sorry, getting off track.....in regard to the meds, of course every person is different, as far as what your issue(s) are and what meds you respond to, in the beginning, 10+ years ago I was on Synthroid only and it was fine, about 2 years ago I was on Synthroid (T4) and Cytomel (T3) and that was great! Now Synthroid only is not doing it for me...........again every person is different, I don't think finding a therapy that works is as difficult as finding a doctor who is willing to work with you!!!


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