# Help please!!!



## bleftwich (Apr 30, 2012)

I have been on the thyroid rollercoaster ride for the past few years but my symptoms are getting worse. I have extreme fatigue, pain in joints, cts symptoms, burning neck pain in back of neck, headaches, no sex drive, dry eyes, cold hands and feet (literally have a portable heater on me at all times during the day and night when at home or work), charley horses in calf at night wakes me up while sleeping due to the pain, weight gain and unable to lose, dry skin, dry hair, difficulty falling asleep even though feel exhausted, brain fog, irritability, chronic cough (unsure if related) and the list probably goes on. I also have Stage 4 endometriosis and adenomyosis which I have read is common in thyroid patients. The main symptoms that are worrisome for my day to day is the fatigue, brain fog, cts symptoms and neck pain. These really affect my ability to play with my kids and function like I should. So I have been diagnosed with hypothyroidism and recently an endo told me I have Hashimotos but I am not certain how he knows that (labs will be below) as I thought there was a certain blood test and I dont show he did that. The endo I went to didnt even touch my thyroid and did not send for an ultrasound. I am now looking to find a new endo but want some guidance from you guys as you seem to really know alot on this board. Also, I had a hysterectomy in Dec 2010 and have been on estrogen since March 2011. I was on progesterone for a while but not any longer.

Started on Levo 12.5 in July 2010 
Increased at sometime to Levo 25

2/25/2011 Ranges
TSH 3.583 - .350-4.5
T4 Free	1.04 -	.80-1.80
T3 Free	2.7 -	2.3-4.2

3/3/2011 
Put on Levo 50

5/5/2011 
TSH 2.195 - .350-4.5
T4 Free	1.16 -	.80-1.8
T3 Free	2.8 - 2.3-4.2

10/27/2011 
TSH	2.915 - .350 - 4.5
T4 Free	0.89 - .80 - 1.80
T3 Free	2.6 -	2.3 - 4.2

3/1/2012 
Increased to Synthyroid 75

3/14/2012 
Increased to Synthyroid 125 the same day these labs were drawn 
TSH 3.28 -	.4-4.5
T4 Free	1.2 - .8-1.8
IGF 185 - 52-328 (I am not sure what this is)
2 score	0.6 -	neg 2 to +2
Cortisol	5.4 -	4.0-22

4/19/2012 
TSH 0.019 -	.35-4.5
T4 Free	1.73 -	.8-7.8
T3 Free	4.4 -	2.3-4.2

Decreased to Synthyroid 88 after these labs

After the 4-19 labs I could not get in to see endo right away so my PCP read the labs and reduced my synthroid from 125 to 88 as she said I was now hypo. She said I should have been bursting with energy with labs like that. I was not but I could definitely tell a diff on the 125 as I was up playing with my kids, really focused at work, etc. The only hypo symptom I noticed was that I had two episodes with my vision being blurred, no heart palps or anything. So what do you guys think of all of this? The only thing the 125 helped was fatigue and headaches but I still had all of the other symptoms. Do you think I need T3? (I know my T3 is out of whack right now on the 125 but with lower dose of Syn and T3 maybe). Any other labs or tests I may need? Now that I am back to the 88 I am fatigued with headaches again along with all other symptoms. I dont understand why they dropped me from 125 to 88 - why not to Syn 100? Please help.


----------



## Andros (Aug 26, 2009)

bleftwich said:


> I have been on the thyroid rollercoaster ride for the past few years but my symptoms are getting worse. I have extreme fatigue, pain in joints, cts symptoms, burning neck pain in back of neck, headaches, no sex drive, dry eyes, cold hands and feet (literally have a portable heater on me at all times during the day and night when at home or work), charley horses in calf at night wakes me up while sleeping due to the pain, weight gain and unable to lose, dry skin, dry hair, difficulty falling asleep even though feel exhausted, brain fog, irritability, chronic cough (unsure if related) and the list probably goes on. I also have Stage 4 endometriosis and adenomyosis which I have read is common in thyroid patients. The main symptoms that are worrisome for my day to day is the fatigue, brain fog, cts symptoms and neck pain. These really affect my ability to play with my kids and function like I should. So I have been diagnosed with hypothyroidism and recently an endo told me I have Hashimotos but I am not certain how he knows that (labs will be below) as I thought there was a certain blood test and I dont show he did that. The endo I went to didnt even touch my thyroid and did not send for an ultrasound. I am now looking to find a new endo but want some guidance from you guys as you seem to really know alot on this board. Also, I had a hysterectomy in Dec 2010 and have been on estrogen since March 2011. I was on progesterone for a while but not any longer.
> 
> Started on Levo 12.5 in July 2010
> Increased at sometime to Levo 25
> ...


I sure don't consider that FT3 high as it does fluctuate and if you took your Synthroid before your labs, that alone could have popped it up.

So, it really is a shame that your dose was cut. That is my humble opinion.

If you have not had an ultra-sound after all this time, I would demand one.

Also, I take it you have not had any antibodies' tests?

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Here is info on Hashi's.

Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/

As far as I am personally concerned, the only true diagnosis would be by biopsy. Anything else is mere speculation based on what the medical establishment normally finds in many Hashi's patients.

I am sorry you are struggling. I hope we can point you in the right direction.


----------



## bleftwich (Apr 30, 2012)

Andros - I will for sure ask for an ultrasound when I find a new endo. Still working on that. No I have not had any antibody test done. What will it tell me? So do you think I would benefit from moving Synthroid back up slightly and adding T3? I am also trying to find someone who will possibly prescribe Armour but havent had any luck in my area yet. So do you think I was truly hyper with my last labs? Thank you.

Also why would he test my IGH? I asked him to test my adrenals and he did that and the cortisol.


----------



## bleftwich (Apr 30, 2012)

Also, my 11 year old son has some symptoms of hypothyroidism and I have read it can be genetic. Would his TSH and T3/4 ranges be the same as an adult? I have some old labs he had done at age 8 and based on those he would have been hypo as TSH was 4.5 but their range went up to 4.5 and no one ever said anything about it. I recently went back to see what his levels were now that I know a little more and that is how I found it. He also has high cholesterol and the article you sent me has a section on kids and it says it is common children have high cholesterol with hypo. If this is the case it sounds like I should have some more labs done on him. I would love to find an endo who understands this though before putting him through the ringer like I have been.


----------



## Andros (Aug 26, 2009)

bleftwich said:


> Andros - I will for sure ask for an ultrasound when I find a new endo. Still working on that. No I have not had any antibody test done. What will it tell me? So do you think I would benefit from moving Synthroid back up slightly and adding T3? I am also trying to find someone who will possibly prescribe Armour but havent had any luck in my area yet. So do you think I was truly hyper with my last labs? Thank you.
> 
> Also why would he test my IGH? I asked him to test my adrenals and he did that and the cortisol.


You are converting very well, I would not tamper with that at all. Synthroid seems to be working perfectly for you albeit as long as you can find a doc to keep you on the right dose and he/she does not panic when the FREE T3 is 0.2 above the top of the range. The range is only a guildline for pity's sakes!!!

I Googled IGH labs and could not turn anything up.

No, I don't think you were hyper w/your last labs. You felt pretty good, yes? You did not have tremors, trouble sleeping, hyperactivity or diarrhea? No? Yes?

Cool as a cucumber; I'll bet.

If you would rather be on Armour, that's fine with me. I think all patients should be happy and by the way, Armour also has minute amounts of T1 and T2 which could make a difference for you.


----------



## bleftwich (Apr 30, 2012)

Sorry it was IGF and when I looked it up it is a growth test which I dont think would apply to me or my adrenals but who knows.

Yes I felt pretty good with the Syn 125 as far as fatigue and headaches. I was still have lots of joint pain in hands and fingers, burning neck pain and pretty much all of my other symptoms. No heart palps but did have a couple of blurred vision incidents. I didnt mention those to her but just noticed that when I looked up hyper symptoms after she told me I was hyper. Honestly I dont even think she looked at the T3 but was going by the TSH levels. I hate this condition! Seriously you just feel like a guinea pig. They tell you to try this for another 6 weeks. Well 6 weeks of feeling like this feels like an eternity.

Also, the reason I asked about T3 is because I have seen many of you talk about the joint pain went away when you took T3. My body just aches and neck/shoulder area burns daily.


----------



## Andros (Aug 26, 2009)

bleftwich said:


> Sorry it was IGF and when I looked it up it is a growth test which I dont think would apply to me or my adrenals but who knows.
> 
> Yes I felt pretty good with the Syn 125 as far as fatigue and headaches. I was still have lots of joint pain in hands and fingers, burning neck pain and pretty much all of my other symptoms. No heart palps but did have a couple of blurred vision incidents. I didnt mention those to her but just noticed that when I looked up hyper symptoms after she told me I was hyper. Honestly I dont even think she looked at the T3 but was going by the TSH levels. I hate this condition! Seriously you just feel like a guinea pig. They tell you to try this for another 6 weeks. Well 6 weeks of feeling like this feels like an eternity.


You may have to find a doctor who is more into this stuff. A TSH worshipper is a bad bad doctor.

Also, check your ferritin for pain and other annoying symptoms.

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)

And consider giving up all glutens, artificial sweetners and all sodiums such as MSG. Sodium Chloride is salt and sea salt is good. There are about 30 or more different chemical sodiums in our food processing today.

You get the above out of your system and I will be willing to bet you will be pain free.

Do your research.


----------



## Gwen1 (Sep 3, 2011)

The problem with jumping you up to the 125 from the 75, is overshooting your needs. If the doc would just continue titrating up with the 88 to the 100 to the 112 and test you every 6-8 weeks on each dose, you will get to the right dose. Your symptoms did sound hyper to me as I was just over medicated. And hyper does sneak up on you. You did not want to continue on that dose. It usually takes me 5 weeks for the over medication to hit me if the dose is too high. Hope this helps.


----------



## CA-Lynn (Apr 29, 2010)

If there's one thing I've learned in my 20+ years of this disease it's that doses must be changed slooooooooooooowly. At little change can pack a big wallop.


----------



## bleftwich (Apr 30, 2012)

Had labs done again on 5-3 as dr wanted to see where I was before switching to Armour or sending to endo. I do not have the report in front of me but here is what she told me over phone. Also, posted what labs were in April.

5/3/2012
Ranges
TSH .02 - .35-4.5
T4 Free - she did not tell me
T3 Free 4.2 - 2.3-4.2

4/19/2012	
TSH 0.019 -	.35-4.5
T4 Free	1.73 -	.8-7.8
T3 Free	4.4 -	2.3-4.2

So she said I am severely hyper and is concerned. She agreed to switch me to Armour since I cannot seem to get rid of symptoms on Synthroid. I was on Syn 88 at this lab and she switched me to Armour 1/2 grain which is actually equivalent to syn 50. When I was on Syn 50 was when my TSH was at 3.25. So I have been on Acella (generic for Armour) since Friday. I woke up jittery on Sat and have stayed that way since. I am splitting my dose every day. So is this from the T3? Should I be concerned? Will this go away or is there a transition period? Should I call the dr?


----------



## Andros (Aug 26, 2009)

bleftwich said:


> Had labs done again on 5-3 as dr wanted to see where I was before switching to Armour or sending to endo. I do not have the report in front of me but here is what she told me over phone. Also, posted what labs were in April.
> 
> 5/3/2012
> Ranges
> ...


How do you know you have not flipped over to hyperthyroid, meds aside?

Sounds like it to me. Have you had that ultra-sound?

Have you had this test?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

If you are hyper, changing to another thyroxine replacement is not going to help, it will make you worse; especially w/ the T3 that is in the Armour.

I don't understand what this doctor is thinking.


----------



## bleftwich (Apr 30, 2012)

Andros - yes my doctor now says that I am hyper and that is why she cut the dose back. But during that cut back she switched me to Armour and I am having the symptoms now after starting Armour/Acella. I did not have jitters until the morning after starting it. No I have not had the ultrasound yet. She wants me to stay on Armour for 6 weeks and if not any better then she will send me to an endo for the ultrasound and the labs you recommended. I was going to try to wait it out the next 6 weeks because she was willing to let me try Armour and I am not sure if the endo will so I wanted to see if it worked before moving on. I took 1/2 of my 30 mg pill this morning and had the jitters all day until around 5. I did not take the 2nd half this afternoon and do not have jitters now. But 15 mg is only equivalent to 25 mg of Synthroid (I think) and I was hypo on 50 mg of Synthroid. I dont know if I should continue with 1/2 of the Acella pill or call my doctor. If it is something that goes away with time I dont want to complain as I dont want her to yank if it may help me.


----------



## Andros (Aug 26, 2009)

[quote name='bleftwich']Andros - yes my doctor now says that I am hyper and that is why she cut the dose back. But during that cut back she switched me to Armour and I am having the symptoms now after starting Armour/Acella. I did not have jitters until the morning after starting it. No I have not had the ultrasound yet. She wants me to stay on Armour for 6 weeks and if not any better then she will send me to an endo for the ultrasound and the labs you recommended. I was going to try to wait it out the next 6 weeks because she was willing to let me try Armour and I am not sure if the endo will so I wanted to see if it worked before moving on. I took 1/2 of my 30 mg pill this morning and had the jitters all day until around 5. I did not take the 2nd half this afternoon and do not have jitters now. But 15 mg is only equivalent to 25 mg of Synthroid (I think) and I was hypo on 50 mg of Synthroid. I dont know if I should continue with 1/2 of the Acella pill or call my doctor. If it is something that goes away with time I dont want to complain as I dont want her to yank if it may help me.[/QUOTE

Well................do let us know how you make out w/this. I am not at all sure you should be on Armour at this time. Mrs. Worry Wart here.


----------



## bleftwich (Apr 30, 2012)

Talked to my doctor today. Stopped Armour (generic) and went back to Synthroid. Will stay on it for 6 weeks to see how I do and see if I can get out of hyper and towards optimal level. My fear is I will go hypo again because I am not sure if dose is high enough but have decided I want to take these med changes a little slower and am going to stick to my guns about it now that I know more and have been thru this crazy rollercoaster with them increasing and decreasing them so drastically. At the next 6 week labs I am going to ask to go to the endo for further investigation if not better.


----------



## Andros (Aug 26, 2009)

bleftwich said:


> Talked to my doctor today. Stopped Armour (generic) and went back to Synthroid. Will stay on it for 6 weeks to see how I do and see if I can get out of hyper and towards optimal level. My fear is I will go hypo again because I am not sure if dose is high enough but have decided I want to take these med changes a little slower and am going to stick to my guns about it now that I know more and have been thru this crazy rollercoaster with them increasing and decreasing them so drastically. At the next 6 week labs I am going to ask to go to the endo for further investigation if not better.


How much Synthroid are you on now? I take it your doc won't run the tests I suggested such as the TSI and the ultra-sound?


----------



## bleftwich (Apr 30, 2012)

One more question. Is my Cortisol posted in first post considered low? Does it just need to be in range or is it best to be at a certain point in the range?


----------



## bleftwich (Apr 30, 2012)

I am on Synthroid 88 right now. After 6 weeks of this then depending on where I am my dr. is going to refer me to an endo she recommends and I will ask about those tests you recommended. My PCP said she knows the endo runs those tests but the PCP admitted she does not know enough about them so she will defer to the endo on them.


----------

