# Problems



## Sharon

Hi everyone,
First I apologize for being a pain.
This past week has been terrible. My hands and feet are quite swollen, my joints are killing me. My face is swollen, and my neck swells on and off. I'm still having what seems to be internal tremors several times a week. In the past month I've lost quite a lot of hair and I just don't have any stamina for anything. Isn't this a sign that I'm not getting enough medication? The new doc keeps saying it's not related. I say it is. These are my lasted test results:
8-17-11

T4, Free(Direct), S 0.94 Range: 0.82-1.77 ng/dL
T4 6.4 4.5-12.0 ug/dL
T3, Free 2.6 2.0-4.4 pg/mL
TSH 4.820 0.450-4.500 uIU/mL
T3 Uptake 2.9 24-39%
Free Thyroxine Index 1.9 1.2-4.9

Previous:

8-01-11
Thyroid THYROID STIM HORMONE: 3.20 mcU/mL (0.300-5.00)
F T4: 0.54 ng/dL (0.50-1.20)

5-19-11
Thyroxine (T4) Free, Direct, S
T4, Free (Direct) 0.94 ug/dL 0.82-1.77
TSH 3.610 ug/dL 0.450-4.500
Triliodothyronine, Free, Serum 2.9 pg/mL 2.0-4.4

Thanks,
Sharon


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## Octavia

Sharon, my vote would be that this means you could use just a bit more medication. Can you ask your doctor "can we TRY a little more medication, and see what happens?" That way, you're acknowledging that the doc may be right, but you're also suggesting, hey, let's try something...
Just a thought.


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## Andros

Sharon said:


> Hi everyone,
> First I apologize for being a pain.
> This past week has been terrible. My hands and feet are quite swollen, my joints are killing me. My face is swollen, and my neck swells on and off. I'm still having what seems to be internal tremors several times a week. In the past month I've lost quite a lot of hair and I just don't have any stamina for anything. Isn't this a sign that I'm not getting enough medication? The new doc keeps saying it's not related. I say it is. These are my lasted test results:
> 8-17-11
> 
> T4, Free(Direct), S 0.94 Range: 0.82-1.77 ng/dL
> T4 6.4 4.5-12.0 ug/dL
> T3, Free 2.6 2.0-4.4 pg/mL
> TSH 4.820 0.450-4.500 uIU/mL
> T3 Uptake 2.9 24-39%
> Free Thyroxine Index 1.9 1.2-4.9
> 
> Previous:
> 
> 8-01-11
> Thyroid THYROID STIM HORMONE: 3.20 mcU/mL (0.300-5.00)
> F T4: 0.54 ng/dL (0.50-1.20)
> 
> 5-19-11
> Thyroxine (T4) Free, Direct, S
> T4, Free (Direct) 0.94 ug/dL 0.82-1.77
> TSH 3.610 ug/dL 0.450-4.500
> Triliodothyronine, Free, Serum 2.9 pg/mL 2.0-4.4
> 
> Thanks,
> Sharon


Sharon, it is my opinion that you are horribly undermedicated. Most of us like our TSH @ 1.0 or less and the FREES above the mid-range of the range provided by your lab.

This is a travesty; you need to find another doctor. This one is keeping you at a baaaaaaaaaaaaaaaaaaaaaad place.


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## Sharon

Octavia said:


> Sharon, my vote would be that this means you could use just a bit more medication. Can you ask your doctor "can we TRY a little more medication, and see what happens?" That way, you're acknowledging that the doc may be right, but you're also suggesting, hey, let's try something...
> Just a thought.


This doctor does not want to hear much of anything. I told him on my first visit I wanted to stay on NP Thyroid because that's what has helped me and it's the only one I don't have a bad reaction to. He insisted that I go on Tirosint. Against my better judgment I tried it. I couldn't take this pill more than three days because it make me quite ill. Headaches, nausea, and hives. I emailed him and told him what was going on and I needed a prescription for NP Thyroid. His response "I still think Tirosint is a better medication for you". He gave me a prescription for NP Thyroid after I asked him how he could say that knowing the bad reaction I had from it. But, only one refill. He's one of these guys that feels once I'm feeling better then he'll lower my dose.


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## Sharon

[quote name='Andros']Sharon, it is my opinion that you are horribly undermedicated. Most of us like our TSH @ 1.0 or less and the FREES above the mid-range of the range provided by your lab.

This is a travesty; you need to find another doctor. This one is keeping you at a baaaaaaaaaaaaaaaaaaaaaad place.

Andros,
I'm so very sick of doctors. My last hope is talking to the NP I go to. This guy is doctor #7. What in the world is wrong with these doctors. Do they really think they know how we feel better than us. I'm at the point that if the next person I go to is like the rest then I'll have to find a way to self medicate. I'm tired of spending my days and nights in agony. I'm becoming more like a vegetable than a human being and I'm sick of it. I have never been so unproductive in my life :sad0004:
Friday I'll be going for more blood work and we'll see how it is.


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## webster2

I am so sorry to hear this. You deserve much better. I hope the NP will be a little more proactive and help you out. Best wishes, and I will keep you in my prayers.


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## Octavia

Not a bad idea to see the NP. Maybe she/he will not have such an "ego" when it comes to listening to you and figuring this out. Best of luck to you!!!!! :hugs:


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## Sharon

webster2 said:


> I am so sorry to hear this. You deserve much better. I hope the NP will be a little more proactive and help you out. Best wishes, and I will keep you in my prayers.


Thank you, prayers always help.
Sharon


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## Sharon

Octavia said:


> Not a bad idea to see the NP. Maybe she/he will not have such an "ego" when it comes to listening to you and figuring this out. Best of luck to you!!!!! :hugs:


Thank you. I'll find out what she says next week. She won't be back until after Thanksgiving.
Sharon


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## Andros

Sharon said:


> Andros said:
> 
> 
> 
> Sharon, it is my opinion that you are horribly undermedicated. Most of us like our TSH @ 1.0 or less and the FREES above the mid-range of the range provided by your lab.
> 
> This is a travesty; you need to find another doctor. This one is keeping you at a baaaaaaaaaaaaaaaaaaaaaad place.
> 
> Andros,
> I'm so very sick of doctors. My last hope is talking to the NP I go to. This guy is doctor #7. What in the world is wrong with these doctors. Do they really think they know how we feel better than us. I'm at the point that if the next person I go to is like the rest then I'll have to find a way to self medicate. I'm tired of spending my days and nights in agony. I'm becoming more like a vegetable than a human being and I'm sick of it. I have never been so unproductive in my life :sad0004:
> Friday I'll be going for more blood work and we'll see how it is.
> 
> 
> 
> I hear you loud and clear! Been there and so have many others on this board.
> 
> Truly truly very concerned for and about you. I hope you know that I sincerely mean that.
Click to expand...


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## Sharon

Andros said:


> Sharon said:
> 
> 
> 
> I hear you loud and clear! Been there and so have many others on this board.
> 
> Truly truly very concerned for and about you. I hope you know that I sincerely mean that.
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> Andros,
> Thank you very much. I do know that you and everyone are genuine. All of you have been wonderful! :hugs:
> I'm on pins and needles waiting for my NP to get back so I can talk to her. I can't tell you how miserable I am from the symptoms of Hashis. Who knew!!
> 
> Is it normal to have pains in your thyroid?
> Sharon
Click to expand...


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## Andros

Sharon said:


> Andros said:
> 
> 
> 
> Andros,
> Thank you very much. I do know that you and everyone are genuine. All of you have been wonderful! :hugs:
> I'm on pins and needles waiting for my NP to get back so I can talk to her. I can't tell you how miserable I am from the symptoms of Hashis. Who knew!!
> 
> Is it normal to have pains in your thyroid?
> Sharon
> 
> 
> 
> Sharon; pain anywhere is not normal so the answer is no, it is not normal.
> 
> You have had an ultra-sound?
> 
> {{{{Sharon}}}}
Click to expand...


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## Sharon

Andros said:


> Sharon said:
> 
> 
> 
> Sharon; pain anywhere is not normal so the answer is no, it is not normal.
> 
> You have had an ultra-sound?
> 
> {{{{Sharon}}}}
> 
> 
> 
> Andros,
> It was done in March. Here are the results:
> MARCH 2011
> ULTRASSOUND
> 
> INDICATION:	Hypothyroidism.
> 
> FINDINGS: The right lobe measures 4.1x 1.5 x 1.8cm and the left lobe 3.3 x 1.4 x 1.6
> cm in greatest dimension. There is diffuse heterogeneity without a discrete mass noted on either side.
> 
> IMPRESSION:	grossly normal sized gland with diffuse heterogeneity of the echotexture. No discrete mass is appreciated.
> 
> The endo I saw said it was a lumpy, bumpy mess.
Click to expand...


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## Andros

Sharon said:


> Andros said:
> 
> 
> 
> Andros,
> It was done in March. Here are the results:
> MARCH 2011
> ULTRASSOUND
> 
> INDICATION:	Hypothyroidism.
> 
> FINDINGS: The right lobe measures 4.1x 1.5 x 1.8cm and the left lobe 3.3 x 1.4 x 1.6
> cm in greatest dimension. There is diffuse heterogeneity without a discrete mass noted on either side.
> 
> IMPRESSION:	grossly normal sized gland with diffuse heterogeneity of the echotexture. No discrete mass is appreciated.
> 
> The endo I saw said it was a lumpy, bumpy mess.
> 
> 
> 
> Would you like to have it out?
Click to expand...


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## Sharon

Andros said:


> Sharon said:
> 
> 
> 
> Would you like to have it out?
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> If it would help me to feel much better than I do. When I tried to tell him about the swelling and pain he blew it off as a histamine attack of some sort. I don't believe for a second that's what it was.
Click to expand...


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## Andros

Sharon said:


> Andros said:
> 
> 
> 
> If it would help me to feel much better than I do. When I tried to tell him about the swelling and pain he blew it off as a histamine attack of some sort. I don't believe for a second that's what it was.
> 
> 
> 
> LHM (Lord have mercy!) I throw up my hands in utter despair!
Click to expand...


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## Sharon

Andros said:


> Sharon said:
> 
> 
> 
> LHM (Lord have mercy!) I throw up my hands in utter despair!
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> Andros,
> I can tell you that I'm worried to death. Nothing, the symptoms, the throat, etc. is getting any better. I feel worse everyday. And getting more depressed everyday. I feel like a huge baby. I'm at my wits end. What's your opinion on having the thyroid out?
Click to expand...


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## Andros

Sharon said:


> Andros said:
> 
> 
> 
> Andros,
> I can tell you that I'm worried to death. Nothing, the symptoms, the throat, etc. is getting any better. I feel worse everyday. And getting more depressed everyday. I feel like a huge baby. I'm at my wits end. What's your opinion on having the thyroid out?
> 
> 
> 
> I would go to an ENT and go for it. I kid you not! This is ridiculous. Why should you have to wait 30 years for it to burn out or end up w/cancer?
> 
> You need your life back; big time!
Click to expand...


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## Sharon

It's me again:rolleyes:

Well, the wonderful endo that is dropped like a hot rock just emailed me. Below is what he had to say:

I've reviewed the labs; your thyroid level is a little too high, likely reflecting "t3 toxicosis" from the np thyroid. we should change your dose to 75mg once daily and recheck labs in around 3 months. Would you like us to call in the Rx? Hope you're feeling better.

I can't even give the results of my bloodwork because he didn't give me the results. I'm trying to get a copy from the lab.

Can you believe this! T3 Toxicosis isn't caused by NP Thyroid from what I'm reading. I'm taking 90 mg. of NP Thyroid once a day and I feel like garbage and this jerk wants to lower the dose. It doesn't even come in 75mg. This T3 Toxicosis really has me worried. Does anyone have any experience with this? I'm trying to find more information about it.
Thanks,
Sharon


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## Andros

Sharon said:


> It's me again:rolleyes:
> 
> Well, the wonderful endo that is dropped like a hot rock just emailed me. Below is what he had to say:
> 
> I've reviewed the labs; your thyroid level is a little too high, likely reflecting "t3 toxicosis" from the np thyroid. we should change your dose to 75mg once daily and recheck labs in around 3 months. Would you like us to call in the Rx? Hope you're feeling better.
> 
> I can't even give the results of my bloodwork because he didn't give me the results. I'm trying to get a copy from the lab.
> 
> Can you believe this! T3 Toxicosis isn't caused by NP Thyroid from what I'm reading. I'm taking 90 mg. of NP Thyroid once a day and I feel like garbage and this jerk wants to lower the dose. It doesn't even come in 75mg. This T3 Toxicosis really has me worried. Does anyone have any experience with this? I'm trying to find more information about it.
> Thanks,
> Sharon


Sharon; sadly we need to see the numbers to discuss T3 toxicosis. Have you asked around for an ENT?


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## Sharon

Andros said:


> Sharon; sadly we need to see the numbers to discuss T3 toxicosis. Have you asked around for an ENT?


Andros,
I just got the labs:

11-28-11

T3-Uptake 43.70 Range: 32.00 - 48.00
TSH 0.02 0.34 - 5.60
FT4 0.92 0.61 - 1.12

10-5-ll

T4 6.4 4.5-12.0 ug/dL
TSH 0.035 L 0.450-4.500	uIU/mL
T3 Uptake 30 24-39%	
Free Thyroxine Index 1.9 1.2-4.9

I'll be talking to the NP on Monday about an ENT.
Sharon


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## Andros

Sharon said:


> Andros,
> I just got the labs:
> 
> 11-28-11
> 
> T3-Uptake 43.70 Range: 32.00 - 48.00
> TSH 0.02 0.34 - 5.60
> FT4 0.92 0.61 - 1.12
> 
> 10-5-ll
> 
> T4 6.4 4.5-12.0 ug/dL
> TSH 0.035 L 0.450-4.500	uIU/mL
> T3 Uptake 30 24-39%
> Free Thyroxine Index 1.9 1.2-4.9
> 
> I'll be talking to the NP on Monday about an ENT.
> Sharon


Glad you are seeing the NP about an ENT on Monday. These labs; well................some of them are just outdated and no longer in use. Tch. It would be nice to have had the FREE T3.

However...................to the practiced eye (Holy cats, is that me? Ha, ha), that T3 uptake has gone up which also is suggestive of hyper.

As you know, this is a protein.
T3 Resin Uptake (hyper if high)
http://www.nlm.nih.gov/medlineplus/ency/article/003688.htm

I will be anxious to hear from you when you can re your NP visit.


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## Sharon

[quote name='Andros']Glad you are seeing the NP about an ENT on Monday. These labs; well................some of them are just outdated and no longer in use. Tch. It would be nice to have had the FREE T3.

However...................to the practiced eye (Holy cats, is that me? Ha, ha), that T3 uptake has gone up which also is suggestive of hyper.

As you know, this is a protein.
T3 Resin Uptake (hyper if high)
http://www.nlm.nih.gov/medlineplus/ency/article/003688.htm

I will be anxious to hear from you when you can re your NP visit.

Andros,
Is it the T3 Resin Uptake that's out of date? So, I have Hashimoto's/Hypothyroid and I'm headed to being hyper. What in the world causes that? What is T3 Toxicosis? I'm anxious hoping she's going to help me. I'm trying to put together a list of tests I'm going to ask her to run.
Sharon


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## webster2

I hope your visit goes well with the NP, mine did and I am very happy with her. Best of luck to you. I will say a prayer that all goes well, and that you will feel better very soon.


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## Sharon

webster2 said:


> I hope your visit goes well with the NP, mine did and I am very happy with her. Best of luck to you. I will say a prayer that all goes well, and that you will feel better very soon.


Thank you,
I'm praying it all works out tomorrow.


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## Andros

Sharon said:


> Andros said:
> 
> 
> 
> Glad you are seeing the NP about an ENT on Monday. These labs; well................some of them are just outdated and no longer in use. Tch. It would be nice to have had the FREE T3.
> 
> However...................to the practiced eye (Holy cats, is that me? Ha, ha), that T3 uptake has gone up which also is suggestive of hyper.
> 
> As you know, this is a protein.
> T3 Resin Uptake (hyper if high)
> http://www.nlm.nih.gov/medlineplus/ency/article/003688.htm
> 
> I will be anxious to hear from you when you can re your NP visit.
> 
> Andros,
> Is it the T3 Resin Uptake that's out of date? So, I have Hashimoto's/Hypothyroid and I'm headed to being hyper. What in the world causes that? What is T3 Toxicosis? I'm anxious hoping she's going to help me. I'm trying to put together a list of tests I'm going to ask her to run.
> Sharon
> 
> 
> 
> Free Thyroxine Index, T3 uptake are really seldom used anymore.
> 
> Please read the below; it may be beneficial to you.
> 
> understanding thyroid labs
> http://www.amarillomed.com/howto/#Thyroid
> 
> T3 Toxicosis is where you have to much active hormone which is T3/FREE T3 and it can be life-threatening.
> 
> http://www.ucsfhealth.org/conditions/hyperthyroidism/signs_and_symptoms.html
Click to expand...


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## Sharon

I'll be seeing the NP in the am. This is a list of tests I was thinking of asking her to run. Can I get your opinions please?

Complete thyroid panel---3rd generation. 
Free T4 
Free T3 
Total T3/
Total T4	
Reverse T3
Complete adrenal function panel

Full Iron Panel (Serum Iron, TIBC/UIBC, % sat), ferritin
CMP 
ANA 
VITAMIN D (25 hydroxy)
CALCIUM 
VITAMIN B12
TPOAb 
TSI 
TBII 
TgAb
Full Iron Panel (Serum Iron, TIBC/UIBC, % sat), ferritin
RA Factor
test for Lupus
Ultrasound
FNA


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## Andros

Sharon said:


> I'll be seeing the NP in the am. This is a list of tests I was thinking of asking her to run. Can I get your opinions please?
> 
> Complete thyroid panel---3rd generation.
> Free T4
> Free T3
> Total T3/
> Total T4
> Reverse T3
> Complete adrenal function panel
> 
> Full Iron Panel (Serum Iron, TIBC/UIBC, % sat), ferritin
> CMP
> ANA
> VITAMIN D (25 hydroxy)
> CALCIUM
> VITAMIN B12
> TPOAb
> TSI
> TBII
> TgAb
> Full Iron Panel (Serum Iron, TIBC/UIBC, % sat), ferritin
> RA Factor
> test for Lupus
> Ultrasound
> FNA


Lupus would be Anti-DNA

Good list; let us know and you know we "all" wish you the very best tomorrow.


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## Sharon

Well, I just got back home from my visit with the NP. She wasn't happy at all when she saw the numbers of my last blood test. When she saw the T3 Toxicosis diagnosis she decided to send me to an Endo because she said it was over her head. She wouldn't refer me to an ENT because she wouldn't go to any of them in town. She is going to run a number of the tests but not all. She said to let the Endo run the others. The nurse was telling me to tell the Endo to take the thyroid out. 
So, I feel like I'm back to square one. We'll see what happens. I should have the results back in a few days.
Sharon


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## Andros

Sharon said:


> Well, I just got back home from my visit with the NP. She wasn't happy at all when she saw the numbers of my last blood test. When she saw the T3 Toxicosis diagnosis she decided to send me to an Endo because she said it was over her head. She wouldn't refer me to an ENT because she wouldn't go to any of them in town. She is going to run a number of the tests but not all. She said to let the Endo run the others. The nurse was telling me to tell the Endo to take the thyroid out.
> So, I feel like I'm back to square one. We'll see what happens. I should have the results back in a few days.
> Sharon


One good thing, Sharon. You found an incredibly honest and straightforward woman and I think in the near future, you will be able to work w/her on a permanent basis.

So, did she give you a referral to a good endo?


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## Sharon

Andros said:


> One good thing, Sharon. You found an incredibly honest and straightforward woman and I think in the near future, you will be able to work w/her on a permanent basis.
> 
> So, did she give you a referral to a good endo?


Andros,
I let her know how much I appreciated her honesty. It was refreshing. She seems to have referred me to a good endo. People seem to like him. I'll know in a couple of days when I see him.


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## Andros

Sharon said:


> Andros,
> I let her know how much I appreciated her honesty. It was refreshing. She seems to have referred me to a good endo. People seem to like him. I'll know in a couple of days when I see him.


I think you may be headed in the right direction here. I cannot wait to find out for sure.

Bless your heart; something has to give and soon!


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## Jya1124

Wow I just read the entire thread and I am going through the same thing, but honestly and unfortunately getting all of the same answers. They just found my thyroid to be abnormally enlarged and my levels stating to go hyper. He said my tpo level was 13 so that was indicative of the enlarged thyroid not being related to hashis and now is saying I possibly have graves as well or something else is going on. He did not do anymore lab work, so I went on base to have more bloodwork done. I'm only on synthroid 75mcg daily, and worried that my treatment is not being adequately met. He keeps insisting that my hair loss, coldness, weeping, dry skin rapid heart beat etc is only related to my "stress induced illness" and refused to do anything further. I'm in the process of switching endos to a better one in a larger metroplex, I'm very concerned and definitely know what you are going through. Im so sick of doctors telling me that my numbers are okay so it's not my thyroid when he JUST told me he thought I had graves and that my thyroid was abnormally enlarged. It makes no sense. He thinks I'm a hypocondiact and treats me as one. I'm so sick of it all, I hope you feel better. It really seems like thyroid removal all together is in my near future as well unfortunately. Andros is very informed and I'm glad that we have someone to talk to and read informative information from someone experienced. It's sad that this seems like the only place that we are not judged and don't feel like we're being pushed aside. Why is it so hard to find a good doctor who actually gives a damn!???


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## Sharon

Jya1124 said:


> Wow I just read the entire thread and I am going through the same thing, but honestly and unfortunately getting all of the same answers. They just found my thyroid to be abnormally enlarged and my levels stating to go hyper. He said my tpo level was 13 so that was indicative of the enlarged thyroid not being related to hashis and now is saying I possibly have graves as well or something else is going on. He did not do anymore lab work, so I went on base to have more bloodwork done. I'm only on synthroid 75mcg daily, and worried that my treatment is not being adequately met. He keeps insisting that my hair loss, coldness, weeping, dry skin rapid heart beat etc is only related to my "stress induced illness" and refused to do anything further. I'm in the process of switching endos to a better one in a larger metroplex, I'm very concerned and definitely know what you are going through. Im so sick of doctors telling me that my numbers are okay so it's not my thyroid when he JUST told me he thought I had graves and that my thyroid was abnormally enlarged. It makes no sense. He thinks I'm a hypocondiact and treats me as one. I'm so sick of it all, I hope you feel better. It really seems like thyroid removal all together is in my near future as well unfortunately. Andros is very informed and I'm glad that we have someone to talk to and read informative information from someone experienced. It's sad that this seems like the only place that we are not judged and don't feel like we're being pushed aside. Why is it so hard to find a good doctor who actually gives a damn!???


I don't understand why it's so difficult to find a good doctor except for the fact most of them don't know much about the thryroid. And the majority are brainwashed into thinking synthetic drugs are what's best for everyone.
Sharon


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## Sharon

Just got my results back from the doctor.

12-06-11	
TSH 0.01 L 0.40-4.50
FT4 1.1 0.8-1.8
FT3 3.3 2.3-4.2

11-28-11

T3-Uptake 43.70 32.00-48.00
TSH 0.02 L 0.34-5.60
Free T4-Thyroxine 0.92 0.61-1.12

10-5-ll 
T4 6.4 4.5-12.0 
TSH 0.035 L 0.450-4.500 
T3 Uptake 30 24-39%	
Free Thyroxine Index 1.9 1.2-4.9

Do you believe these numbers? Have you seen anything like this before? The NP didn't run all the tests she said she would. The doctor in the office took my case over. It just might be a blessing in disguise. He said "you can go to the NP for a cold or the flu maybe, but I'm taking care of you now". He is really worried about the numbers and was stressing all the symptoms that go along with this wonderful disease and exactly what it can do to our bodies. He is lowering my dose of NP Thyroid to try to get my TSH up to around 1. If it doesn't work then he's going to run tests to see if I have graves. He also doesn't want to take the thyroid out yet. He also doesn't want me going to the endo the NP was going to refer me to. He thought I ordered the NP Thyroid from overseas. When he realized it was a prescription he wrote one for me. I was pleasantly surprised with him. Let's pray he stays this way. He asked about the endo I saw and I explained to him about the Tirosint reaction I had and the endo wasn't too pleased with me because of it. He started to laugh and said "he probably has stock in the company, oops I shouldn't have said that. What the hell difference does it make which type of thyroid medication you're taking as long as you're taking thyroid medication". I was almost rolling on the floor by the time I left.
Sharon


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## HeidiBR

Sharon,

Do you have hyper symptoms? If not, my endo likes to keep TSH very suppressed - it is not a measure of hyper - more important are your free T3 and free T4 which look pretty good.

Do you feel hyper?


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## Sharon

HeidiBR said:


> Sharon,
> 
> Do you have hyper symptoms? If not, my endo likes to keep TSH very suppressed - it is not a measure of hyper - more important are your free T3 and free T4 which look pretty good.
> 
> Do you feel hyper?


There are times I get very jittery, my eyes have been quite sore lately and I've lost six pounds in one week.


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## Sharon

My doctor called me Sunday evening to let me know the rest of my labs came in and I tested positive for lupus. I don't have the results in front of me so I can't give you the exact numbers. He did say the range was from 1-80 and my numbers were the lowest he has ever seen. He wants to send me to a rheumatologist. To those that have lupus do you see a rheumatologist? 
Thanks,
Sharon


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## Octavia

Oh, I'm sorry to hear that. Hopefully knowing this will be the first step in helping you feel better, though.


----------



## Sharon

Octavia said:


> Oh, I'm sorry to hear that. Hopefully knowing this will be the first step in helping you feel better, though.


Thank you. I'm hoping it's a step in the right direction. Now we know that there's something else going on other than Hashimoto's. I can't tell you how shocked I was that the doctor called me at home on a Sunday.


----------



## webster2

I am sorry to hear that too. Now that they know what you have, hopefully you will begin to be treated correctly, and feel much better very soon.


----------



## Andros

Sharon said:


> My doctor called me Sunday evening to let me know the rest of my labs came in and I tested positive for lupus. I don't have the results in front of me so I can't give you the exact numbers. He did say the range was from 1-80 and my numbers were the lowest he has ever seen. He wants to send me to a rheumatologist. To those that have lupus do you see a rheumatologist?
> Thanks,
> Sharon


And as you know, I am not surprised but not happy to hear that. On the bright side, I manage my Lupus quite well w/o meds.

If you are interested, let me know. Wait until the dust settles and see what the doc has to say.

I "do" see a rheumatologist and she manages my thyroid replacement as well. We are a "team!"


----------



## Sharon

webster2 said:


> I am sorry to hear that too. Now that they know what you have, hopefully you will begin to be treated correctly, and feel much better very soon.


Thank you. Everyone on this board is so kind!


----------



## Sharon

Andros said:


> And as you know, I am not surprised but not happy to hear that. On the bright side, I manage my Lupus quite well w/o meds.
> 
> If you are interested, let me know. Wait until the dust settles and see what the doc has to say.
> 
> I "do" see a rheumatologist and she manages my thyroid replacement as well. We are a "team!"


Andros, 
I would like to hear how you manage your lupus. The less pills I take the better. I'm looking for a rheumatologist towards Nashville. The guy that's in the town where I live isn't liked at all.

Can lupus make you feel jittery? What about feeling exhausted? Is there anything I should be on the look out for? I know it can be different with everybody.

I'm so glad this doctor caught it. That explains the rash I had on my body a couple of years ago and, the lingering rash on my chest and neck, and the red rash that comes and goes on my face. The top of my nose stayed red. Like a rash. 
Thanks,
Sharon


----------



## Andros

Sharon said:


> Andros,
> I would like to hear how you manage your lupus. The less pills I take the better. I'm looking for a rheumatologist towards Nashville. The guy that's in the town where I live isn't liked at all.
> 
> Can lupus make you feel jittery? What about feeling exhausted? Is there anything I should be on the look out for? I know it can be different with everybody.
> 
> I'm so glad this doctor caught it. That explains the rash I had on my body a couple of years ago and, the lingering rash on my chest and neck, and the red rash that comes and goes on my face. The top of my nose stayed red. Like a rash.
> Thanks,
> Sharon


The most important thing I and my doctor agree upon is to keep the TSH suppressed. My TSH is usually 0.03, sometimes less. This keeps the antibodies to Lupus and other autoimmune diseases very very quiet. At present, my Anti-DNA is undetectable whereas initially the Anti-DNA was through the roof.

I have both kinds; systemic and discoid.

Then life style improvements. Get all artificial sweeteners and sodiums such as MSG (we need sodium chloride; I prefer sea salt for no special reason other than I like it) out of your diet. Have a long hard look at getting glutens out of your diet for "if" you are allergic to them, they will trigger antibodies and the inflamatory process. That means pain!

Proper rest and sleep; some sort of daily exercise preferably outside such as walking or joining a gym and "actually" going. A lot of people have gym memberships but they don't go with consistency meaning 4 or more times a week.

Avoid things that might incite you such as phone calls from needy people and complainers, stuff on TV etc..

Think postive, act positive, do random acts of kindness, don't hang out with negative people and don't say bad things about others.

Work on getting all stressors out of your life. This is not easy but it can be done. You can't do a clean sweep overnight. Just make a plan and chip away at it.

Don't let others drain your cup; keep it full all the time by looking for the good in every part of your life instead of the bad.

Attitude is a huge part of overcoming this; it really is!

The only med I take is Armour. I do take supplements that "support" the immune system, however. You want to be sure you do not take anything that "boosts" the immune system for by doing so, you not only trigger the good antibodies but you trigger the bad ones as well.

B-Complex, timed release
Selenium'
Omega III Carlson's
Omega VI Black Currant Seed Oil
Magnesium
Ginko Biloba
Bilberry
Electrolyte Essentials
Cranberry Capsules
CoQ10

We are not clones; I realize that. What works for me, may not work for you but you may be able to glean some ideas from what works for me.


----------



## Sharon

Andros said:


> The most important thing I and my doctor agree upon is to keep the TSH suppressed. My TSH is usually 0.03, sometimes less. This keeps the antibodies to Lupus and other autoimmune diseases very very quiet. At present, my Anti-DNA is undetectable whereas initially the Anti-DNA was through the roof.
> 
> I have both kinds; systemic and discoid.
> 
> Then life style improvements. Get all artificial sweeteners and sodiums such as MSG (we need sodium chloride; I prefer sea salt for no special reason other than I like it) out of your diet. Have a long hard look at getting glutens out of your diet for "if" you are allergic to them, they will trigger antibodies and the inflamatory process. That means pain!
> 
> Proper rest and sleep; some sort of daily exercise preferably outside such as walking or joining a gym and "actually" going. A lot of people have gym memberships but they don't go with consistency meaning 4 or more times a week.
> 
> Avoid things that might incite you such as phone calls from needy people and complainers, stuff on TV etc..
> 
> Think postive, act positive, do random acts of kindness, don't hang out with negative people and don't say bad things about others.
> 
> Work on getting all stressors out of your life. This is not easy but it can be done. You can't do a clean sweep overnight. Just make a plan and chip away at it.
> 
> Don't let others drain your cup; keep it full all the time by looking for the good in every part of your life instead of the bad.
> 
> Attitude is a huge part of overcoming this; it really is!
> 
> The only med I take is Armour. I do take supplements that "support" the immune system, however. You want to be sure you do not take anything that "boosts" the immune system for by doing so, you not only trigger the good antibodies but you trigger the bad ones as well.
> 
> B-Complex, timed release
> Selenium'
> Omega III Carlson's
> Omega VI Black Currant Seed Oil
> Magnesium
> Ginko Biloba
> Bilberry
> Electrolyte Essentials
> Cranberry Capsules
> CoQ10
> 
> We are not clones; I realize that. What works for me, may not work for you but you may be able to glean some ideas from what works for me.


 Andros,
Thank you for sharing this information. I will try my best at everything.


----------



## Andros

Sharon said:


> Andros,
> Thank you for sharing this information. I will try my best at everything.


That's the "key"; giving your best shot. We are human and not so perfect sometimes but "trying" is what counts.

And get your doc to work w/you on your goals.


----------



## CorralesNM

Sharon, I'm so sorry to hear about the lupus, but I agree with everyone - maybe now that you have a diagnosis, you can get treated and get feeling better. My friend's granddaughter, who is 20, had a diagnosis of lupus confirmed recently. Yet, the state of California had originally suggested that she had lupus 5 years ago but never sent her for treatment - she was on MediCal.
Good luck,
Maureen


----------



## Lidia

You are hypo!!!!!! You need more meds to feel better and stop this hair falling. Find new endo ! Will pray for you!
Lidia


----------



## Sharon

CorralesNM said:


> Sharon, I'm so sorry to hear about the lupus, but I agree with everyone - maybe now that you have a diagnosis, you can get treated and get feeling better. My friend's granddaughter, who is 20, had a diagnosis of lupus confirmed recently. Yet, the state of California had originally suggested that she had lupus 5 years ago but never sent her for treatment - she was on MediCal.
> Good luck,
> Maureen


I'm not surprised about the state not sending that poor girl for treatment. I wonder how these people live with themselves. I hope she's doing well. 
I was on state health insurance years ago. Even though I paid a monthly premium the doctors didn't treat patients the way they should have. They let you know you weren't worth their time.
I'm hoping things will work out. A lot of what I read says this can be tricky to diagnose. One time the tests shows positive another not. We'll see.


----------



## Sharon

Lidia said:


> You are hypo!!!!!! You need more meds to feel better and stop this hair falling. Find new endo ! Will pray for you!
> Lidia


Yes, I'm hypo. I have Hashimoto's. The endo is fired! He did nothing to help. He was too busy looking at his computer and blaming the NP Thyroid instead of listening. 
The new doctor just lowered my dose of NP Thyroid from 90mg to 60mg to see if it will help with the jitters I keep getting. I've only been on the lower dose for a week. It seemed to be working but I got a bad case of the jitters last night. NP thyroid has a lot less fillers so I was getting more medicine than I was used to. He thought I was being over medicated. He'll boost me back up after we see what else is going on with me.


----------



## webster2

I am so glad someone is finally getting to the root of the problem, and treating you. It is long overdue... a little librarian humor, sorry....Best wishes, and I will keep you in my prayers.


----------



## bigfoot

Sharon said:


> The new doctor just lowered my dose of NP Thyroid from 90mg to 60mg to see if it will help with the jitters I keep getting. I've only been on the lower dose for a week. It seemed to be working but I got a bad case of the jitters last night. NP thyroid has a lot less fillers so I was getting more medicine than I was used to. He thought I was being over medicated. He'll boost me back up after we see what else is going on with me.


That is most excellent! Sometimes it is hard to tell which way is up, down, left, or right when taking thyroid meds. You might swear you are hypo, but actually be hyper on labs. Or vice-versa. The signs & symptoms seem to mix quite a bit (at least for me). Sounds like this new doc is already thinking outside of the box, and that is a great thing!

hugs3


----------



## Sharon

webster2 said:


> I am so glad someone is finally getting to the root of the problem, and treating you. It is long overdue... a little librarian humor, sorry....Best wishes, and I will keep you in my prayers.


Love the humor! Thank you.


----------



## Sharon

bigfoot said:


> That is most excellent! Sometimes it is hard to tell which way is up, down, left, or right when taking thyroid meds. You might swear you are hypo, but actually be hyper on labs. Or vice-versa. The signs & symptoms seem to mix quite a bit (at least for me). Sounds like this new doc is already thinking outside of the box, and that is a great thing!
> 
> hugs3


You're right, most days lately I don't know which end is up. The symptoms do seem the same. I'm learning that the symptoms between the thyroid and lupus can be quite similar. I'm praying this new doc doesn't change.


----------



## Sharon

Opinions please. I just got back from a visit with my doctor. He said right now he isn't going to refer me to a rheumatologist because he can treat me in the beginning for lupus. He said my ANA results were 1:80 and that's also the range. He said I was on the low side but definitely have lupus. He says he's sure because of the rash I have on my neck and chest, faint butterfly rash on my face, and other symptoms are those of lupus.
What is your opinion? Should he treat it or should a rheumatologist?
Thanks,
Sharon


----------



## Andros

Sharon said:


> Opinions please. I just back from a visit with my doctor. He said right now he isn't going to refer me to a rheumatologist because he can treat me in the beginning for lupus. He said my ANA results were 1:80 and that's also the range. He said I was on the low side but definitely have lupus. He says he's sure because of the rash I have on my neck and chest, faint butterfly rash on my face, and other symptoms are those of lupus.
> What is your opinion? Should he treat it or should a rheumatologist?
> Thanks,
> Sharon


That would depend on the treatment protocul of each doctor. As you know, I don't take any meds for my lupus. My rheumatologist supports my life-style improvements and supplement and exercise regimen.

Anyway; ANA is only suggestive of a myriad of autoimmune diseases.

If you want proof positive; Anti-DNA, C3 and C4.

It would be good to establish a baseline of the above which you can look up here.

http://labtestsonline.org/understanding/analytes/anti-dsdna/


----------



## Sharon

Andros said:


> That would depend on the treatment protocul of each doctor. As you know, I don't take any meds for my lupus. My rheumatologist supports my life-style improvements and supplement and exercise regimen.
> 
> Anyway; ANA is only suggestive of a myriad of autoimmune diseases.
> 
> If you want proof positive; Anti-DNA, C3 and C4.
> 
> It would be good to establish a baseline of the above which you can look up here.
> 
> http://labtestsonline.org/understanding/analytes/anti-dsdna/


Andros,
Thank you for the information. I'm praying that he isn't going to turn out like the rest of the doctors I've been to.


----------



## Andros

Sharon said:


> Andros,
> Thank you for the information. I'm praying that he isn't going to turn out like the rest of the doctors I've been to.


They seem to be cloned from a specific mold; that is for sure!!

I am saying a prayer w/you.


----------



## Sharon

Andros said:


> They seem to be cloned from a specific mold; that is for sure!!
> 
> I am saying a prayer w/you.


Andros,
I have to say that without a doubt I am absolutely sick of these doctors. This guy called me at home on a Sunday, told me to think about a rheumatologist I wanted to go to and then he tells me it's nothing to be concerned with.  Go figure.


----------



## Sharon

I just got the results back from the new labs taken last week. Unless I'm mistaken the numbers don't look great. What are your opinions?

1-6-12

TSH 0.05 L 0.40-4.50
FT4 0.9 0.8-1.8
FT3 2.7 2.3-4.2

12-06-11

TSH 0.01 L 0.40-4.50
FT4 1.1 0.8-1.8
FT3 3.3 2.3-4.2


----------



## Andros

Sharon said:


> I just got the results back from the new labs taken last week. Unless I'm mistaken the numbers don't look great. What are your opinions?
> 
> 1-6-12
> 
> TSH 0.05 L 0.40-4.50
> FT4 0.9 0.8-1.8
> FT3 2.7 2.3-4.2
> 
> 12-06-11
> 
> TSH 0.01 L 0.40-4.50
> FT4 1.1 0.8-1.8
> FT3 3.3 2.3-4.2


It would appear you would have some wiggle room w/ the FT3. Most of us like it above the mid-range. Yours is in the middle.

What thyroxine replacement are you on and how much? Did the doctor comment? Do you think you could use a bit more thyroid replacement based on how you feel which is...........................????


----------



## Sharon

Andros said:


> It would appear you would have some wiggle room w/ the FT3. Most of us like it above the mid-range. Yours is in the middle.
> 
> What thyroxine replacement are you on and how much? Did the doctor comment? Do you think you could use a bit more thyroid replacement based on how you feel which is...........................????


Andros,
The doctor lowered my dose from 90 mg once a day of NP Thyroid down to 60 mg once a day because he didn't like the numbers from last month. He said the TSH and T4 were too low. Yes, I feel I could use a little more. I'm not feeling good at all. I'm trying to convince him to take this thyroid out but he's not going for it. I'm wondering if my body is converting the medication like it should. All the hypo symptoms are back - face is swelling (can't stand wearing my glasses it hurts so bad), hands are swelling, itching. What really bothers me is on the left side of my throat it will bulge and then go away. It has done this several times. Of course when I saw him last week it looked normal and he thought I was imagining things and of course he couldn't feel anything and he shrugged his shoulders. I just feel like a total mess and I can't stand it anymore. I feel like a big baby.:sad0049:


----------



## Andros

Sharon said:


> Andros,
> The doctor lowered my dose from 90 mg once a day of NP Thyroid down to 60 mg once a day because he didn't like the numbers from last month. He said the TSH and T4 were too low. Yes, I feel I could use a little more. I'm not feeling good at all. I'm trying to convince him to take this thyroid out but he's not going for it. I'm wondering if my body is converting the medication like it should. All the hypo symptoms are back - face is swelling (can't stand wearing my glasses it hurts so bad), hands are swelling, itching. What really bothers me is on the left side of my throat it will bulge and then go away. It has done this several times. Of course when I saw him last week it looked normal and he thought I was imagining things and of course he couldn't feel anything and he shrugged his shoulders. I just feel like a total mess and I can't stand it anymore. I feel like a big baby.:sad0049:


But, but, but!!!!!! What happened to the patient's likes and dislikes?? Good grief. He needs to put you back on the dose you were on. If he won't do that, try to find a doc that will. This is a travesty!!

Sharon; maybe you need to see an ENT???

You are not a big baby; you are a person whose health care is being mismanaged.


----------



## Sharon

Andros said:


> But, but, but!!!!!! What happened to the patient's likes and dislikes?? Good grief. He needs to put you back on the dose you were on. If he won't do that, try to find a doc that will. This is a travesty!!
> 
> Sharon; maybe you need to see an ENT???
> 
> You are not a big baby; you are a person whose health care is being mismanaged.


Andros,
I'm going to raise the dose by a 1/4 of a pill myself. I can't get into an ENT without a referral and he won't refer me. Could this be happening because my body is attacking the thyroid? I'm so disillusioned by doctors that I just don't trust them. I was so po'd last week, this guy kept his back toward me the entire time I was there. Once again I was fooled by yet another doctor. My last hope is an NP that's in town. Everybody likes her but I'm leery of being bamboozled again!

Yesterday I called a doctor that people couldn't brag enough about who is supposedly in the know about helping with the thyroid. Well, let me tell you right off the bat the receptionist was a real B! This is what their "NEW PATIENT ACCEPTANCE QUESTIONAIRE" (they misspelled questionnaire) said:

"Please answer the following questions so that we may properly assess our ability to receive you into our practice at this time.

Please note that we do not take any new patients that have any kind of neck pains, back pains or suffer from fibromyalgia or are currently taking any kind of pain medications (even from pain management) or mood stabilizing medications. If you are accepted as a new patient and we find out that any falsification to this questionnaire has been made, we will terminate you as a patient immediately. Also we do not accept any new Tricare patients".

Can you believe this? I want theses doctors to start filling out questionnaires for me. I'm tired of finding out the doctor I went to is a complete idiot.


----------



## Andros

Sharon said:


> Andros,
> I'm going to raise the dose by a 1/4 of a pill myself. I can't get into an ENT without a referral and he won't refer me. Could this be happening because my body is attacking the thyroid? I'm so disillusioned by doctors that I just don't trust them. I was so po'd last week, this guy kept his back toward me the entire time I was there. Once again I was fooled by yet another doctor. My last hope is an NP that's in town. Everybody likes her but I'm leery of being bamboozled again!
> 
> Yesterday I called a doctor that people couldn't brag enough about who is supposedly in the know about helping with the thyroid. Well, let me tell you right off the bat the receptionist was a real B! This is what their "NEW PATIENT ACCEPTANCE QUESTIONAIRE" (they misspelled questionnaire) said:
> 
> "Please answer the following questions so that we may properly assess our ability to receive you into our practice at this time.
> 
> Please note that we do not take any new patients that have any kind of neck pains, back pains or suffer from fibromyalgia or are currently taking any kind of pain medications (even from pain management) or mood stabilizing medications. If you are accepted as a new patient and we find out that any falsification to this questionnaire has been made, we will terminate you as a patient immediately. Also we do not accept any new Tricare patients".
> 
> Can you believe this? I want theses doctors to start filling out questionnaires for me. I'm tired of finding out the doctor I went to is a complete idiot.


That is just going waaaaaaaaaaaaaaaaaaaay too far! Holy cats!! They will soon find themselves out of business. Just today the Twinkie division of Hostess Cupcakes is filing Chapter 11 and 19,000 employees will be unemployed. OMG!!!

Everybody better get off their high horse here. The direction we are headed in does not bode well for any of us and that includes the medical profession.

Try the NP; you may be surprised. I sure hope so. Many here see an NP and they are thrilled.


----------



## Sharon

I'm back with the lab results for the ANA IFA SCREEN W/REFL TO TITER AND PATTERN, IFA and more confused than every. The doctor said one thing and the lab report says another. Anyways, here are the results:

ANA SCREEN, IFA POSITIVE NEGATIVE

PLATELET COUNT 440 H 140-400 Thousand/uL
ANA PATTERN HOMOGENEOUS (no range given)
ANA TITER 1:80 H TITER

REFERENCE RANGE
<1:40 Negative
1:40 -1:80	Low Antibody Level
>1:80 Elevated Antibody Level


----------



## Andros

Sharon said:


> I'm back with the lab results for the ANA IFA SCREEN W/REFL TO TITER AND PATTERN, IFA and more confused than every. The doctor said one thing and the lab report says another. Anyways, here are the results:
> 
> ANA SCREEN, IFA POSITIVE NEGATIVE
> 
> PLATELET COUNT 440 H 140-400 Thousand/uL
> ANA PATTERN HOMOGENEOUS (no range given)
> ANA TITER 1:80 H TITER
> 
> REFERENCE RANGE
> <1:40 Negative
> 1:40 -1:80	Low Antibody Level
> >1:80 Elevated Antibody Level


What did your doctor say? You have ANA. That is "suggestive" of a myriad of things.

You may wish to read this. http://labtestsonline.org/understanding/analytes/ana/tab/test

Your doc should pursue more "specific" testing.


----------



## Sharon

Andros said:


> What did your doctor say? You have ANA. That is "suggestive" of a myriad of things.
> 
> You may wish to read this. http://labtestsonline.org/understanding/analytes/ana/tab/test
> 
> Your doc should pursue more "specific" testing.


I asked him to run Anti-DNA, C3 and C4 and he won't run anymore tests so we know one way or the other. He's now saying I must be hyperthyroid and someone made a mistake someplace in the tests and I was misdiagnosed. Even though he has copies of all the tests confirming I have Hashimoto's. He won't even run a test to make sure I don't have any cancerous nodes on my thyroid.
I'm looking for someone else.


----------



## Andros

Sharon said:


> I asked him to run Anti-DNA, C3 and C4 and he won't run anymore tests so we know one way or the other. He's now saying I must be hyperthyroid and someone made a mistake someplace in the tests and I was misdiagnosed. Even though he has copies of all the tests confirming I have Hashimoto's. He won't even run a test to make sure I don't have any cancerous nodes on my thyroid.
> I'm looking for someone else.


Oh, man!!! Is insurance controlling the decision-making process here perchance?

You should be able to get an ultra-sound and any other tests you deem necessary to your well being.

Sharon; I am so sorry. I hope you can find a better doctor. Please keep us informed.


----------



## Andros

Sharon said:


> Andros,
> I have to say that without a doubt I am absolutely sick of these doctors. This guy called me at home on a Sunday, told me to think about a rheumatologist I wanted to go to and then he tells me it's nothing to be concerned with.  Go figure.


A rheumatologist might be your best bet. I see one and she saved my life. She put me on Armour and keeping the TSH suppressed also keeps the Lupus antibodies at bay. And I mean really really quiet.


----------



## Sharon

Andros said:


> A rheumatologist might be your best bet. I see one and she saved my life. She put me on Armour and keeping the TSH suppressed also keeps the Lupus antibodies at bay. And I mean really really quiet.


If I have to go to a clinic and get someone to refer me that's what I'm going to do.

I just noticed that I missed a TSH result on the ANA IFA SCREEN W/REFL TO TITER AND PATTERN, IFA report.

TSH 0.01 L 0.40-4.50

It contradicts the previous results of TSH 0.05 L 0.40-4.50


----------



## Octavia

Sharon said:


> TSH 0.01 L 0.40-4.50
> 
> It contradicts the previous results of TSH 0.05 L 0.40-4.50


Those don't seem different enough to worry about, IMHO. There is a slight margin of error in any lab result, so in my opinion, those two results are about as close as one could get to each other.

To clarify...the results themselves might be worrysome, as that is a very low TSH, but the difference between the two results seems very small to me.


----------



## Sharon

Octavia said:


> Those don't seem different enough to worry about, IMHO. There is a slight margin of error in any lab result, so in my opinion, those two results are about as close as one could get to each other.
> 
> To clarify...the results themselves might be worrysome, as that is a very low TSH, but the difference between the two results seems very small to me.


Thank you. I believe you're right about the difference. What is worrying me is the more I read everything is pointing to a pituitary problem.


----------



## CA-Lynn

Methinks you should pour your energy into getting a good endocrinologist, even if it means driving some distance. Also, you will want to make sure that this endocrinologist focuses on thyroid related disorders as opposed to diabetes. [In some cities endocrinologists have sub-specialties.]

If you are restricted by your insurance then contact them and explain that your current doctor is not a good fit and will not refer you. If you choose not to do that, go to an urgent care in your city and get THEM to refer you.


----------



## Sharon

CA-Lynn said:


> Methinks you should pour your energy into getting a good endocrinologist, even if it means driving some distance. Also, you will want to make sure that this endocrinologist focuses on thyroid related disorders as opposed to diabetes. [In some cities endocrinologists have sub-specialties.]
> 
> If you are restricted by your insurance then contact them and explain that your current doctor is not a good fit and will not refer you. If you choose not to do that, go to an urgent care in your city and get THEM to refer you.


I did go to an endocrinologist who was supposed to be one of the best and he was supposed to focus on the thyroid but he turned out to be terrible. He saw my numbers were dropping and he did nothing.

I'm lucky enough to be able to go to who I want. The problem is getting the referrals. It's funny you should mention going to an urgent care my husband and I were just talking about that.

I'm very discouraged at how little doctors know about the thryoid.


----------



## webster2

Sharon said:


> I did go to an endocrinologist who was supposed to be one of the best and he was supposed to focus on the thyroid but he turned out to be terrible. He saw my numbers were dropping and he did nothing.
> 
> I'm lucky enough to be able to go to who I want. The problem is getting the referrals. It's funny you should mention going to an urgent care my husband and I were just talking about that.
> 
> I'm very discouraged at how little doctors know about the thryoid.


I agree with you most doctors seem to know very little about thyroid imbalances. It surprises me that with the number of thyroid patients, that some physicians have not been among the numbers.

I have started seeing a naturopath, and feel pretty good. I hope you will find someone soon.


----------



## Sharon

webster2 said:


> I agree with you most doctors seem to know very little about thyroid imbalances. It surprises me that with the number of thyroid patients, that some physicians have not been among the numbers.
> 
> I have started seeing a naturopath, and feel pretty good. I hope you will find someone soon.


I would go to a naturopath or holistic doctor if they took insurance. It not possible for me to pay their prices out of pocket. There is a doctor close by but he does everything by email or phone, not office visits! I wouldn't trust that either.

Every doctor I have been to claimed they could help before my first visit but when I get there all they do is stare at you. Lucky to even get a grunt from them. One insisted If I went to her pain and weight loss clinics I would be a so much better off. Yeah right! When I refused she proceeded to tell me I had myxedema and she would see me in six months. Needless to say I didn't make the appointment.


----------



## webster2

Sharon said:


> I would go to a naturopath or holistic doctor if they took insurance. It not possible for me to pay their prices out of pocket. There is a doctor close by but he does everything by email or phone, not office visits! I wouldn't trust that either.
> 
> Every doctor I have been to claimed they could help before my first visit but when I get there all they do is stare at you. Lucky to even get a grunt from them. One insisted If I went to her pain and weight loss clinics I would be a so much better off. Yeah right! When I refused she proceeded to tell me I had myxedema and she would see me in six months. Needless to say I didn't make the appointment.


Ugh, I hate this for you. Sounds like some of them have been almost quacks. I live in Vermont, and was really surprised that the ND accepted insurance. She told me that the Vermont legistlature ruled that all naturopaths are to be included in insurance plans offered in Vermont. I would not be seeing her otherwise.

I will keep you in my prayers. Your struggle to get the correct treatment has gone on too long without any progress. :hugs::hugs:


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## Sharon

webster2 said:


> Ugh, I hate this for you. Sounds like some of them have been almost quacks. I live in Vermont, and was really surprised that the ND accepted insurance. She told me that the Vermont legistlature ruled that all naturopaths are to be included in insurance plans offered in Vermont. I would not be seeing her otherwise.
> 
> I will keep you in my prayers. Your struggle to get the correct treatment has gone on too long without any progress. :hugs::hugs:


I wish Tennessee would make a lot of these guys take insurance. Thank you for the prayers.


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## Sharon

Have an appointment with the NP on Tuesday. Please say a prayer that this is the one to help. I spoke to her myself earlier and she said she would help. Let's hope she really does.


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## Octavia

Sending prayers and positive vibes. By NP, do you mean "naturopath" or Nurse Practitioner?


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## Andros

Sharon said:


> Have an appointment with the NP on Tuesday. Please say a prayer that this is the one to help. I spoke to her myself earlier and she said she would help. Let's hope she really does.


Sending huge prayers! Can't wait to hear from you and I hope it's all good!


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## Sharon

Octavia said:


> Sending prayers and positive vibes. By NP, do you mean "naturopath" or Nurse Practitioner?


Thank you. I should have made myself clear--it's Nurse practitioner.


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## Sharon

Had the appointment with the NP today. I really hate to get my hopes up but she seems to be more thorough than any of the doctors I've seen. 
She wants to read all the files I brought into her first but she wants to run an RAIU and told me to stop the thyroid medication.

For those that have had this test what can you tell me about it?


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## Octavia

Glad to hear the NP appointment went well!

(Nothing to contribute to the RAIU scan...never had one.)


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## webster2

It measures the percentage of iodine that the thyroid takes in, apparently thyroids love iodine. I think hyper takes up a higher percentage of the iodine than hypo. Sometimes the measurements are taken at 4 and 24 hour hours. I could be off target here. I found it to be a relaxing test, and dozed during it.


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## webster2

Glad you have found someone that listens and will treat you. You have waited long enough for this.


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## Andros

Sharon said:


> Had the appointment with the NP today. I really hate to get my hopes up but she seems to be more thorough than any of the doctors I've seen.
> She wants to read all the files I brought into her first but she wants to run an RAIU and told me to stop the thyroid medication.
> 
> For those that have had this test what can you tell me about it?


It's a walk in the park; nothing to it. How long will you be off meds in prep for the RAIU?


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## Sharon

Octavia said:


> Glad to hear the NP appointment went well!
> 
> (Nothing to contribute to the RAIU scan...never had one.)


I was taken by her straightforwardness. I hope it stays this way.


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## Sharon

webster2 said:


> It measures the percentage of iodine that the thyroid takes in, apparently thyroids love iodine. I think hyper takes up a higher percentage of the iodine than hypo. Sometimes the measurements are taken at 4 and 24 hour hours. I could be off target here. I found it to be a relaxing test, and dozed during it.


I'm glad it's an easy test. If I relaxed that much I would fall off the table!


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## Sharon

Andros said:


> It's a walk in the park; nothing to it. How long will you be off meds in prep for the RAIU?


She told me to stop taking them today for almost one month. I'm already feeling the effects. She mentioned stopping the NP Thyroid and putting me on Cytomel for a while. If my Free T4 is 0.9	range 0.8-1.8 is this the thing to do?

She is willing to check a number of things. In her words "we will get to the bottom of all this". She believes there is something else going on with me. She was irritated that my numbers have been dropping with each blood test and nobody thought of doing anything other than lower the dose of my medication.

Her nurse who took me back to the exam room was telling me how she just didn't feel good for quite a long time and her family doctor and few others told her she was "imagining" things. When she came to work for the NP she could hardly keep going and took a break resting her hand around her neck because she was in pain and felt a lump. The NP sent her for tests and she hand a goiter. She had her thyroid out last year.


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## Andros

Sharon said:


> She told me to stop taking them today for almost one month. I'm already feeling the effects. She mentioned stopping the NP Thyroid and putting me on Cytomel for a while. If my Free T4 is 0.9	range 0.8-1.8 is this the thing to do?
> 
> She is willing to check a number of things. In her words "we will get to the bottom of all this". She believes there is something else going on with me. She was irritated that my numbers have been dropping with each blood test and nobody thought of doing anything other than lower the dose of my medication.
> 
> Her nurse who took me back to the exam room was telling me how she just didn't feel good for quite a long time and her family doctor and few others told her she was "imagining" things. When she came to work for the NP she could hardly keep going and took a break resting her hand around her neck because she was in pain and felt a lump. The NP sent her for tests and she hand a goiter. She had her thyroid out last year.


It sounds like you are in expert hands. What is the dose of your T3? That will just get you through and then you will stop that about 10 days prior to the RAIU, I believe.

Keep the faith; I think you have gotten very lucky.


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## Sharon

Andros said:


> It sounds like you are in expert hands. What is the dose of your T3? That will just get you through and then you will stop that about 10 days prior to the RAIU, I believe.
> 
> Keep the faith; I think you have gotten very lucky.


I'm not on anything until after the RAIU. She's talking about putting me on cytomel because the Free T4. Is this normal to do with low T4?


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## Andros

Sharon said:


> I'm not on anything until after the RAIU. She's talking about putting me on cytomel because the Free T4. Is this normal to do with low T4?


It all depends on what she has in mind. Your T3 is your active hormone so she may be opting to bypass trying to build up your T4 which you may not be converting anyway. That is one possible scenario.

The other is that she could be planning to have you on T4 as well.

You need to talk to her about this. But, the first and very most important thing is getting that RAIU.

Let us know what you find out!


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## Sharon

Andros said:


> It all depends on what she has in mind. Your T3 is your active hormone so she may be opting to bypass trying to build up your T4 which you may not be converting anyway. That is one possible scenario.
> 
> The other is that she could be planning to have you on T4 as well.
> 
> You need to talk to her about this. But, the first and very most important thing is getting that RAIU.
> 
> Let us know what you find out!


I won't know anything until April. The NP had me start taking the NP Thyroid again. The rheumatologist wouldn't take me as a patient. His nurse called me and the NP's office this morning. My case is "too mundane, the doctor likes more challenging cases".:aim33: I just am at a loss for words. My NP gave him the what for. She scheduled an appointment with a different endo. Not my favorite but if this doctor will help then good. If not, this is the end of the doctors. I'm sick and tired of them. I guess the real problem is that I remember when doctor's actually cared about their patients and would never have dreamed of treating them in this manner.


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## Andros

Sharon said:


> I won't know anything until April. The NP had me start taking the NP Thyroid again. The rheumatologist wouldn't take me as a patient. His nurse called me and the NP's office this morning. My case is "too mundane, the doctor likes more challenging cases".:aim33: I just am at a loss for words. My NP gave him the what for. She scheduled an appointment with a different endo. Not my favorite but if this doctor will help then good. If not, this is the end of the doctors. I'm sick and tired of them. I guess the real problem is that I remember when doctor's actually cared about their patients and would never have dreamed of treating them in this manner.


What? Mundane? You? Dear Lord, help us now! I have finally heard everything.


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