# Need magic words! Appt. tommorrow.



## justmethatsall (Oct 1, 2015)

Help! My last posts are under "I think I need more meds."

I have my appt tommorrow afternoon with my endo. Are there any magic words I can use to get him to pay more attention to my ft3 and ft4 than he is my tsh? I am sure I need more meds..........terribly tired, extremely painful joints, gained 12 pounds and my boobs which have been small all my life ( I liked them that way!!)are now at least a size bigger and in my way............dont like them at all! Whats up with them growing so much? Had a TT in Oct 2015. I am on 37.5 synthroid and 10 cytomel. I was on 44 synthroid (and I thought that was too low) when he lowered it because my tsh as at 0.10. Now after last labs 10 days ago it is at 0.25.

Thanking you all in advance.

Also is there a certain way to look up a more natural holistice doc that deals with thyroid meds?


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## Lovlkn (Dec 20, 2009)

Can you please edit your signature with a short history so it follows any topic post you make - which makes it easier for people to understand your situation.

Include diagnosis, last lab's with ranges and current medication and dosage.

Click on your log in name, Profile, edit profile and on the left is signature.


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## justmethatsall (Oct 1, 2015)

OK Lovlkn............done.......now how do I get it on my page. I have it saved............or do they have to preview it and then it automatically comes up??


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## justmethatsall (Oct 1, 2015)

Shoot its in my ...........About me............Do you know how I get it to my signature now???????

Darn I was hoping to have some answers about how to get Doc to pay more attention to my ft3 and ft4 than my tsh. My appt is at 2pm today.....Thursday. Oh Well


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## Lovlkn (Dec 20, 2009)

Click on your log in name, Profile, edit profile and on the left is signature.

Once you scroll down and edit your profile scroll all the way down and "save".


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## Octavia (Aug 1, 2011)

Here's the history and labs you posted in your "About Me" section:

I was very hyperthyroid. I had been on antityhroid meds for at least 10 years. I had two storms and with the last one my goiter grew very quickly. I had my total thyroid removed in Oct of 2015. I have graves and graves thyroid eye disease. My eyes had always been fine till a couple months before the surgery. After the surgery they got really bad along with my tsi level. The range should be below 140. Mine was well over 500. As my tsi level is coming down my eyes are getting better. It is now at 311.

My problem now is extremely painful joints, very tired, lots of migranes, cognitive funtioning is off and gained 12 pounds. My meds are synthroid..........37.5

cytomel.............10

I have not been well since the surgery.

Last labs are as follows......................................tsh.........0.25..........0.40-4.50

tsi..........311..........under 140

ft3..........2.5............2.3-4.2

ft4..........0.8............0.8-1.8

total t3...99..............76-181

My ferritin is at 18........20-288


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## Lovlkn (Dec 20, 2009)

I am going to add some info I have regarding testing both -

The magic words are " I feel horrible ( list your hypo symptoms" My labs are bottom range - " I want you to increase my medication and re-test both FT-4 and FT-3 in 6 weeks to see if it improves".

YOU are going to have to be proactive - keep telling them the truth - YOU feel horrible. Ask for what you want - ask again and if they do not give it to you then find a new doctor.

My experience post op was - if I was in range then all was good with the doctor. Too bad he did not live in MY BODY and feel how fatigued and drained I was feeling. At one point I saw 3 endo's, fired them all then was seeing 2 GP's at the same time - then a friend tole me a GP was treating her Graves so I saw him and he has been my doc since 2009. He understands FT-4 and FT-3 although he is resistant to run FT-3 , he does it because I insist he run it. I run little to no TSH and he doses by FT-4 and FT-3. He also calls Cytomel treatment "unconventional" but he prescribes it for me - because I insisted and spoke about the range within the range. It really comes down to you - the doctor will try to intimidate you but stay strong.


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## Octavia (Aug 1, 2011)

Oh, my. Your Free T3 and Free T4 are atrocious...very, very low. In range? Yes, but barely, and extremely low. No wonder you feel lousy. You have every "right" to demand an increase in your meds. Personally, I feel best with my labs in the upper part of the range.

Please double-check your Synthroid dose...is it actually 137.5, not 37.5?

If your doctor is using ONLY TSH to dose you, this is your opportunity to educate him/her about paying more attention to Free T3 and Free T4...those are the labs that matter more than TSH, as those are the active, available hormones in your body.


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## joplin1975 (Jul 21, 2011)

You are on a CRAZY low dose for having a TT. TSH or not, your doctor should know that what is reasonable after a TT.

Are you able to doctor shop at all?


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## Octavia (Aug 1, 2011)

By the way, your Ferritin is also atrociously low. Are you on an iron supplement (along with Vitamin C for absorption of the iron)? You reeeeaaaaalllllllyyyyyyy need to get that Ferritin level up. My guess is you won't feel your best until you do so.


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## justmethatsall (Oct 1, 2015)

Thank you everyone. Yes Octavia...........it is 37.5........down from 44. Isnt that incredible??? He says the cytomel is 3 times the strength of synthroid so he wants the synthroid lower.

He said to have my gp address the ferritin. My gp (god bless him........I really do like him) said he is afraid to give me iron suppliments because my iron levels are normal. I talked him into taking them 3 times a week and he will retest in 6 weeks. He is afraid that since my iron levels are ok I will get iron overload by taking suppliments.

Endo says he wants to keep my tsh up because I had that little tiny spot of cancer that was completely gone with the TT. No treament needed for that. Does any of this craziness make sense????

Yes Joplin I would like to find another doctor but I tried once so far and he was worse than the one I have now. At least I have this one trained now to order the frees and to follow the tsi for my eyes. I would however at some point like to find a more natural type doctor who works more with the patient.............just dont know how to look for one.


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## joplin1975 (Jul 21, 2011)

Wait, he wants to keep your TSH up? As in high?

It should be suppressed (or low).


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## justmethatsall (Oct 1, 2015)

He wants to bring my tsh number up because it was at 0.10 so as not to get hyper. Now since he lowered my dose again it has gone up to 0.25. Still not in range for him. So I am afraid he will want to keep my low dosage the same even with all my symptoms.


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## joplin1975 (Jul 21, 2011)

TSH should be kept as low as possible as long as you don't have symptoms. Beyond that, TSH really doesn't matter. You shouldn't have to live like this.


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## creepingdeath (Apr 6, 2014)

What part of the planet do you hail from?

A lot of people from a lot of places on this forum.

Maybe someone could point you in the right direction to a doctor who knows thyroid in your area.

It can't hurt to ask ................


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## Octavia (Aug 1, 2011)

justmethatsall said:


> Thank you everyone. Yes Octavia...........it is 37.5........down from 44. Isnt that incredible??? He says the cytomel is 3 times the strength of synthroid so he wants the synthroid lower.


Even your Cytomel dose is pretty low. I just don't get it. Most people who have a total thyroidectomy are taking at least 125 mcg of Synthroid. You're on a fraction of that. Crazy...


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## justmethatsall (Oct 1, 2015)

Appt over with. I got the endo to raise me from 37.5 to alternating 44 and 50 although he only wanted me to go back to 44. I told him my joints were still hurting at 44. He said thats not usually a symptom of being where my numbers are...........whaaaaaaaaaat?

Joplin.........

He says the tsh is very important because I could get an arithmia of the heart and also osteoporosis. Geeeeeeeeeeesh Ive had osteo for many years because I was hyperthyroid for at least ten years while I was trying to find out what was wrong with me and then on anti thyroid drugs for at least another 10 years. Am 61 now.

He was surprised when I told him I wanted to loose 10 lbs because I am at 115 now but used to being at 105 all my adult life. I am very small boned. Those extra 10 lbs make me feel horrible. I know there are a lot of people a lot heavier and I feel for them but its all relative and at what weight you feel the most comfortable.

Octavia........

He says my cytomel dose is not a low dose. <_<

Creeping Death.........I am in the south jersey area near Sewell. Would love to know if someone knows of a good doc for me!


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## Lovlkn (Dec 20, 2009)

justmethatsall said:


> Appt over with. I got the endo to raise me from 37.5 to alternating 44 and 50 although he only wanted me to go back to 44. I told him my joints were still hurting at 44. He said thats not usually a symptom of being where my numbers are...........whaaaaaaaaaat? *RUN FROM THIS DOCTOR. Your pre TT usual weight 105 = 47.6272kg x 1.7mcg ( manufacturer recommended dose per kilogram = 81mcg replacement daily.*
> 
> Joplin.........
> 
> ...


You need to find a new doctor.

At your current weight you should be at minimum a dose of 88mcg. You can go a tad higher at 100. Be sure to test 6 weeks after changing doses.

How in the world does your current doctor expect you to survive on 44mcg????????

This is why I hang around, WOW - such an incompetence or thyroid hormone replacement management.


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## justmethatsall (Oct 1, 2015)

Lovlkn

He says that the cytomel of 10 mcg along with the synthroid of 37.5 comes out to be around 88mcg altogether. He says that the cytomel is 3 times stronger than the synthroid...........To me it sounds like it comes out to be 67.5. So now I will be on 44 one day and 50 the next of synthroid along with the 10 mcg of cytomel a day.

So if thats true that the cytomel is 3 times stronger now I should be on 74 one day and 80 the next. Does that sound right to you? Probably still not enough but I hope its a good start.

Does it make any sense what he said about getting arithmia and osteoporosis if my tsh drops too much?????


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## justmethatsall (Oct 1, 2015)

Lovlkn,

I just realized that you had written some things in my message. Didnt see that before.

When you say you run at 0 because of stimulating antibodies could that be why my tsh is low???? because my tsi antibodies are high?? They have been over 500 for so long now after the surgery (at least 9 months) but are finally starting to come down. they are at 311 now. Should be under 140. They have been up and down so I am just hoping that they dont go back up again because my eyes are doing better since those tsi levels are coming down.


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## Lovlkn (Dec 20, 2009)

> When you say you run at 0 because of stimulating antibodies could that be why my tsh is low???? because my tsi antibodies are high?? They have been over 500 for so long now after the surgery (at least 9 months) but are finally starting to come down. they are at 311 now. Should be under 140.


I've only had TBII antibodies run which were positive. During my entire time on ATD's I only had TSI run 1x toward the end and prior to my surgery because I insisted they be run. I think they were around 325%

If you have any TSI in my opinion the only way to tract replacement dosing is by FT-4 and FT-3. You will never change your doctors mind, time to find a new doctor. I honestly I think my sales background gave me the courage to educate, question and disagree with my doctors until they either treated me properly or until I found a doctor what was willing to.


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## Lovlkn (Dec 20, 2009)

> He says that the cytomel of 10 mcg along with the synthroid of 37.5 comes out to be around 88mcg altogether.


You take Cytomel as well? I missed that. I feel it matters most to get FT-4 and FT-3 somewhere 1/2-3/4 of range. You are an oddity being treated this way, heavy on cytomel and light on levothyroxine. My belief is since the body is designed to convert T4 hormone to FT-3 hormone take levothyroxine and convert to ability and supplement with T3 hormone.

You are simply under treated.


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## justmethatsall (Oct 1, 2015)

lovlkn

even with my new dosage? 44.......4 days a week.........50............. 3 days a week......of synthroid........ and 10 of cytomel every day.


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## Lovlkn (Dec 20, 2009)

So your only increase in medication is from 44mcg T4 hormone 7 days a week to 4 and 50mcg 3 days a week plus the 10mcg Cytomel daily which I believe is the same as it was??

I doubt an increase of Synthroid of 6mcg 3 days a week will make much of a difference.

Being somewhere between 1/2-3/4 of range is still your goal for both FT-4 and FT-3


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## justmethatsall (Oct 1, 2015)

He had me drop from 44 synthroid every day along with cytomel 10 every day to 37 1/2 synthroid and 10 cytomel for 6 weeks because my tsh was 0.10.........(0.40-4.50) My ft3 at that time was 3.1........(2.3-4.2) My ft4 was 1.0........(0.8-1.8)

My last labs were tsh...........0.25

ft3............2.5

ft4............0.8

I begged him to raise my synthroid. He said because my tsh is low I could have an arythmia and get osteoporosis. I have had osteo for about 20 years now because my thyroid was so overactive for so long before I was finally diagnosed. I told him how tired I am and that Im not loosing any of the 12 lbs I gained and how painful my joints are and asked him if I could just please try a higher dose to see if it helps with my joints. He finally agreed to try me at 44 synthroid 4 days a week and 50 3 days a week along with the cytomel 10.

I asked him if my tsh is that important now because I have had a tt and if it is as important as the ft3 and ft4 and he said........"Of course it is."

He used to only like to test my tsh and my t4 and sometimes my total t3 until I got him to do the others.

My goal has been to get my free t's in that 1/2 to upper range but when he sees my tsh get low he always wants to drop my dosage because of the arythmia thing and the osteo.


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## Lovlkn (Dec 20, 2009)

> He said because my tsh is low I could have an arythmia and get osteoporosis. I have had osteo for about 20 years now because my thyroid was so overactive for so long before I was finally diagnosed.


I have the same issue with osteopenia - my TSH is always at bottom of the actual range. My doctor tells me that my bones are not as bad as some others he has seen and that bone loss is very common with alot of his female patients - not to worry. My dad had osteoperosis so is it heredity or Graves?? My doctor feels if the FT-4 and FT-3 are within range then the low TSH does not matter. I have had TBII labs run to prove I have those antibodies which affect the continued suppression of TSH. My suggestion is to start doctor shopping. You will not feel well until your FT-4 and FT-3 are in the mid to 3/4 of range.

Trying to change your doctors mind obviously is not going to happen.


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