# Fighting with my doctor



## Redbuster (May 19, 2010)

I'm so frustrated. I have had Hash's 35 years. I've only taken levothyroxin or sythroid. Im to the point that I have to pry myself out of bed. I have no energy and cannot keep my eyes open. My whole body aches and I can hardly function.

My doctor has suggested cytomel several times but will not let me try it. I live in fairbanks, alaska, there are no endos in town. I think the closest is in anchorage which is 350 miles away. It takes months to get in for an appointment. My main concern is that i've heard that the doctors in anchorage are old school. Meaning they won't prescribe T3.

I dont know how to go about finding an endo that is practicing newer medicine.

Does anyone have any suggestions on finding a good doctor?

Any thoughts and suggestions would be great.
Thank you.


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## desrtbloom (May 23, 2010)

You might try an internal medicine doctor versus an endo. Many people treat with intermal medicine does rather than endos and have success. No harm in checking out the ones in your area and seeing if there is one that treats patient's with Hashi's.

I'm so sorry you are going through this. I know how frustrating it can be to to find a doctor, especially when you are feeling so poorly.

Best Regards,
Patti


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## Redbuster (May 19, 2010)

Thanks Patti. I will check into an internist. In the meantime what can I do about the aches? Ive heard some people take 3T according to how they feel.


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## HeidiBR (Apr 4, 2010)

I would not take T3 according to how one feels. It is a strong drug and can be dangerous if too much is taken. It works wonders for me, but I remain a bit frightened of it due to its power. Please do not self dose.


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## Andros (Aug 26, 2009)

Redbuster said:


> I'm so frustrated. I have had Hash's 35 years. I've only taken levothyroxin or sythroid. Im to the point that I have to pry myself out of bed. I have no energy and cannot keep my eyes open. My whole body aches and I can hardly function.
> 
> My doctor has suggested cytomel several times but will not let me try it. I live in fairbanks, alaska, there are no endos in town. I think the closest is in anchorage which is 350 miles away. It takes months to get in for an appointment. My main concern is that i've heard that the doctors in anchorage are old school. Meaning they won't prescribe T3.
> 
> ...


Hi and welcome to the board!










How much thyroxine are you taking on a daily basis? What brand are you on now?

Can you post your most recent lab results with the ranges. We need the ranges as different labs use different ranges?

Why won't your doc let you try a tiny bit (5mcgs.) of Cytomel?

The truth is you probably don't need an endo; any doctor should be able to help you, all they have to do is want to.

Do you have any other health concerns besides thyroid?

Are you male or female? It matters when I am trying to sort through "stuff."


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## Redbuster (May 19, 2010)

A little bit of history. I will try to make some sort of sense here. It's hard to keep it all straight sometimes.

I started having chronic urticaria about 6yrs ago (without hives). I have Hashi's and have been on levothyroxin since I was 7yrs. With the results listed bedlow my doctor changed my dose to 175 mcg daily for the past 1 year and a half. His thinking was that I have and autoimmune desease where my body is attacking my Thyroid causing me to have severe itching.

Dec 09 TSH was 14.19 (0.47-4.68)
Dec 09 T4-.54 Now 1.58
T3-365 (230-420 was normal range)

Dec 09 Thyroglobulin Antibodies 25 (reported High)
Dec 09 Thyroid Peroxidase Ab 491 (reported High)
Dec 09 ANA-Screen was Positive-Results:
Pattern:speckled
Titer: 1:160

Pattern: Homogeneous
Titer: 1:40

Reference range:
<1:40 Negative
1:40-1:80 Low Antibody Level
>1:80 Elevated anitbody level

These are my latest Labs June 2011:

TSH .02 (0.47-4.68)
T4 Free 1.85 (0.78-2.19)
T-4 Total 14.4 (4.5-12.0)
Free T4 Index 4.6 (1.4-3.8)
T-3 Uptake 32 (22-35)
Total T3 155 (76-181)
T3 Free 3.8 (2.3-4.2)

Vit D 71 (30-100)

My doctor since has lowered my dose to 150 mcg Levothyroxin daily and added Cytomel 25 mcg daily.

To answer your question from above: I am a 43 yr old female

Other health issues are depression and anxiety, just diagnosed with Intersitial Cystitis (painful bladder syndrome). My main complaint right now is that I ache all over. My joints are swelling and I'm extremely exhausted.

Questions: My vitamin D levels, my dr says that it's high. I've been taking 10,000 ui daily and she wants me to drop down to 2,000 ui daily. I'm feeling great. Not sure why she would want me to back down so much.

Could it be possible that I am having fibromialga symptoms due to my thyroid hormone changes?

I know this is a lot of information. I am going to my doctor tomorrow and am having a heart to heart about if she feels she wants to really help me sort all of this out or should I be finding another dr who has time or wants to help. As always you all are such a great support for me.

Still determined.


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## Andros (Aug 26, 2009)

Redbuster said:


> A little bit of history. I will try to make some sort of sense here. It's hard to keep it all straight sometimes.
> 
> I started having chronic urticaria about 6yrs ago (without hives). I have Hashi's and have been on levothyroxin since I was 7yrs. With the results listed bedlow my doctor changed my dose to 175 mcg daily for the past 1 year and a half. His thinking was that I have and autoimmune desease where my body is attacking my Thyroid causing me to have severe itching.
> 
> ...


Why on earth would the doctor start you out on 25 mcgs. of Cytomel??? The normal starting does is 5 mcg. and even at that, some have to back down to 2.5 mcg. and work their way upward w/labs and constant titration.

Have you started the Cytomel? If so, how many days have you been taking it and how do you feel?

I will be the first to agree that you needed a bit of T3 as your FT3 is just slightly above the mid-range of the range given by your lab. Most of us feel best with FT3 @ about 75% or the range given by your lab.

Noticing that in the past you did have ...............

III.Speckled Pattern ANA
A.Most common, least specific
B.Disorders
1.Systemic Lupus Erythematosus 
2.Mixed Connective Tissue Disease
3.Scleroderma 
4.Sjogren's Syndrome 
C.Further evaluation
1.Smith Antibody (Anti-Smith)
2.Ribonucleoprotein Antibody (Anti-RNP)
3.Scl-70 kD kinetochore (Anti-Topoisomerase I)
4.Anti-La (Anti-SSB)

http://www.fpnotebook.com/rheum/lab/anstngptrn.htm

And if your joints are swelling, Rheumatoid Arthritis would be a consideration also.

Many of us here have more than one thing going on besides thyroid disease.


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## lainey (Aug 26, 2010)

That 25 mcg of cytomel is the equivalent of 100mcg of levothyroxine. I agree, 5 mcg is more likely to start than the 25mcg. That is a lot.

Your labs show the TSH to be suppressed, FT4 in the upper third and FT3 in the upper half--these can't really be improved much to make you feel better, IMHO, more medication will make you hyper.

Vitamin D is stored by the body. With your levels being what they are, if you continue to supplement at such a high dose you will end up with too much in your body, which is toxic.

Your doc can do some testing to see if rheumatoid arthritis is the problem. Have you been tested for celiac or other allergies re: the uticaria? That said, those are not an uncommon problem in people with autoimmune disorders.

Fibromyalgia is usually a diagnosis of exclusion. It's hard to say at this point if this is part of the problem or not.


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## Redbuster (May 19, 2010)

Thanks so much for your reply.

I started 25mcg of Cytomel two weeks ago. I am feeling great at this point. I feel it is helping me with my depression. My heart rate is alittle increased but I am not having any palpatations. My concern is that I am taking too much! I did have an appointment with my doctor today. She said as long as I was not having any palpatations that she was not worried and didn't see the need to do any labs. So basically unless I start having problems I'm good to go and don't need to check with her for 3 months.

Vitamin D: Thanks for your comment on that. I will go down to 2000ui and we are going to do labs in 3 months to check levels.

Celiac: Negative in Nov, 2010

IMHO: I'm not familiar with this accronym.

When tested in dec of 2009 I was told that i tested negative for rheumatoid arthritis and for fibro.

With the items below: should I get tested for these? Should I give the list to my doctor?

III.Speckled Pattern ANA
A.Most common, least specific
B.Disorders
1.Systemic Lupus Erythematosus 
2.Mixed Connective Tissue Disease
3.Scleroderma 
4.Sjogren's Syndrome 
C.Further evaluation
1.Smith Antibody (Anti-Smith)
2.Ribonucleoprotein Antibody (Anti-RNP)
3.Scl-70 kD kinetochore (Anti-Topoisomerase I)
4.Anti-La (Anti-SSB)

Would seeing a rhumatoidologist be of any help? I live in Fairbanks, Alaska. It's really hard to find healthcare providers with our limited access.

I think that gluten plays a roll in how much my itchy skin flares up.

Falling apart, but putting the pieces back together.


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## lainey (Aug 26, 2010)

IMHO = In My Humble Opinion

The beauty of the cytomel is that it has a very short half life--only a couple of days--so if you do experience problems from it, you can back off the dose and it will leave your system pretty quickly. You also should be aware that when the doc does run labs, your TSH may go lower and also your Free T4. This is a natural response to the excess T3 that you are taking. You will need to focus on where the Free T3 is when you are taking medication containing T3--it alters the other labs.

Just because you tested negative 2 years ago for something doesn't mean you shouldn't be tested now--things change--RA especially, as it is autoimmune.

A lot of people with hypo trial a gluten free diet and experience good symptom relief--seems you can be gluten sensitive vs. intolerant (which is what the celiac test is for). If you feel so inclined, it doesn't hurt to try the diet.

I can't comment on the rest of the antibodies testing that Andros recommended--but I'm sure she'll be along to help with that.


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## Redbuster (May 19, 2010)

Thanks for the typing lingo. I'm not too hip when it comes to all those special abbreviations.

I have done gluten free and it does seem to help with the itching. I need to get more focused again on diet. And to throw in the mix...with IC, I am not supposed to eat any foods that have acid. I'm going crazy figuring out what I CAN eat.


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## Andros (Aug 26, 2009)

Redbuster said:


> Thanks for the typing lingo. I'm not too hip when it comes to all those special abbreviations.
> 
> I have done gluten free and it does seem to help with the itching. I need to get more focused again on diet. And to throw in the mix...with IC, I am not supposed to eat any foods that have acid. I'm going crazy figuring out what I CAN eat.


Goodness; I would not recommend all those tests but something is afoot and the Speckled Pattern ANA should be discussed with your doctor.

In my 68 years I have found that it is easier to eat to live than live to eat. Once you psyche yourself into it you find that you are eating well and the bonus is that you feel better.

I never miss food that makes me feel badly. LOL!!!


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