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thyroid removal

After a year  from having my thyroid removed due to hasomotos disease and 3 drs my hair is still falling out to the point of my needing a wig.  I have sweats, headaches, not able to sleep all night, ache in joints.,  They keep switching my meds started on 100 then to 125 then back to 100 then to 112 and now back to 125, like a roller coaster and no help.  All are doctoring the test and no one wants to hear me and how I feel.   Can't switch to other endos as you have to have a referral and you don't know what you are going to get until you switch and seems they only care about what your test say and the range is way broad. Went to a dermatologist and on 5000 mg Biotin for 3 months now but not helping.  Taking Levothyroxin and even tho I tell the dr they have a side effect of hair loss they just shake their head and say it takes time its not the drug.  What do you do?
Best Answer
Avatar universal
You might do some reading on thyroid hormone resistance (THR), which is a condition in which very high levels of FT3 and FT4 are necessary for thyroid hormone to be able to get into cells.  

Another possibility is RT3 dominance.  There are only two ways for the body to rid itself of excess T4...either convert it to FT3 or to RT3 (reverse T3).  RT3 is inert, and this is the body's way of controlling FT3 levels.

A pituitary issue is also possible.

Of course, it should be easier to pin down once we see FT3.

They love to blame everything on depression, don't they?

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Avatar universal
  I very much want to thank you for your help and kindness on this site it means a lot to people that you can get help and talk to caring people when you have questions and no answers  
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Avatar universal
For all of you who have hypothyroid or syptoms like that, i want to say that there is a new expert forum with the name "Hypothyroid-Hashimoto" where an expert doctor can answer your queries. I posted there twice and got answered promptly.Check it out
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Avatar universal
Well, I think it may be time to give up on this doctor.  She's obviously hung up on TSH and didn't even bother to test FT3.  Fingers crossed for July...
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Avatar universal
Just back from seeing the nut endo she said that my TSH is the important test not the t3 or t4  said when the tsh is right the other will fall in line.  She also said my TSH at .55 was normal and she preferred the last at 1.12 but didn't change my meds said to watch for a couple months to see what it is doing.   Also said the new TSH AND Free T4 results were better because I didn't take my meds before the test.  NEWSFLASH  I took my meds before the test so it had nothing to do with the meds at all.  
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Avatar universal
Got my labs from the old dr and all she did was a tsh and t4 free

tsh was 55
free t4 1.45

can't wait to see what she says this afternoon when I see her.  I got into the new dr I was trying to see but not till july so have to make do until then

SCARY
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Avatar universal
Yes and they did so keep your fingers crossed it works.  I just got back from getting the new blood work the old endo wanted due to my TT3 being so low.  She did a TSH and Free T4   don't know why those two but I guess I am not a dr and don't understand most of what this dr does anyhow
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Avatar universal
Did you ask them if they'd put you on a cancellation list?  Sometimes that can really move your appointment up a lot.

I'm glad you're on your way...
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Avatar universal
Yes but his comment to me is he has other patients that want referral too that want to find a dr that will tell them what they want to hear.  I think I have got enough info though to get into the one I want to see.   They took my test results, pathology report from my surgery, ultrasound report and set me up with an appointment.  I am still suppose to see this other endo until they get me in as it is July before they have an opening just hope it comes quick as I think like you I need T3 and who knows what this endo thinks that I am seeing now.
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Avatar universal
Doesn't like to refer?  Isn't that the job of a PCP once a condition gets beyond his expertise?
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Avatar universal
I am trying to get into a dr in Columbus ohio  but have a problem getting a referral as my medical dr doesn't like to refer
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Avatar universal
TT3 isn't as telling a test as FT3, but you can see that you are below range on TT3.  This is a good indication that you are not converting well at all because your FT4 is well up into the range, which means there's plenty of T4 there to convert, but it's not happening.

It looks to me like your doctor needs to lower your T4 meds a little and add in some T3.  T4 is the "storage" form of the thyroid hormones, and your cells can't use it until it is converted to T3.  So, even with fairly high FT4, you are still hypo because little is being converted to T3.  This could have everything to do with your hair loss.

Do you mean you're looking for a new doctor?
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Avatar universal
Well got results but she did not do a free t3  did a total t3 and it was 72  84-172  L  not sure what this means but looking for a doctor I feel is helping me
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Avatar universal
No it isn't back yet so don't know what it is.  I have tried to find a reason for norm TSH and high FT4 and some of the things I have found relate to the pituitary and I have a small tumor on the pituitary but they say they don't think it is anything and are just watching it.  Don't know where to turn as I feel I have to dr myself and I am not a doctor.  So tired of having to fight the dr to get something done or to take me seriously and not as she said I was depressed.  She is enough to depress any patient.  Sorry
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Avatar universal
You're absolutely right.  If you always take your meds before the blood draw, then this result is valid when comparing it to previous levels.  If you suddenly switch that now, you'll lose that comparison.  If this were accounting, instead of medical tests, it would cause a scandal (think Enron...LOL).  Okay, sure, if we don't like the outcome, let's just change the way we count it.

Your FT4 is quite high, but TSH looks good.  Still no FT3?

  
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Avatar universal
Got new results on labs and TSH was1.12  but free T4 2.06

Ask dr about low side for iron 35.4 and she said that it was up to my medical dr to treat that although she was the one who ordered the test but didn't tell me it wasn't great and I found out on this web site.  I had to let her know that I was aware that although it was considered in the norm it was a low norm and could be the reason for my hair loss.  Now she has called and ask if I had taken my thyroid meds before my test which I told her I had taken it at 4;00am and I had always taken my meds the day of my blood test and no one had ever told me not to.  She said that the meds could be the reason my free t4 was elevated and I was to come get another with out taking my pill that day.  If this is right then wouldn't all my test be wrong if the pills are affecting the outcome of the test?  And if I go back to taking the pill the next day doesn't that mean the free t4 goes right back to being elevated?   Am I crazy or is this endo ?
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Avatar universal
Back for blood test today and questioned the endo who said yes the ferritin was low normal but that was my reg dr to deal with although she was the one who did the test.  Refused to redo the test although it was almost 4 month since the last on and I explained that I wanted to know what the level was because I was going to start taking iron pills.  She said she would give my a prescription for iron pills but didn't need to have a new test as I hadn't bleed any.  Go figure. not happy but no endo close but her and all need a referral to get in so what do you do.  
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Avatar universal
That's too low on the ferritin for the proper metabolism of thyroid hormones.  You want it closer to 90.  Also, low iron levels can cause hair loss.

I'd try switching to a different brand levo and see if that helps, too.
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Avatar universal
check and they did a ferrin test it was 35.4 range 11.0-360.8
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Avatar universal
I had a half of one lobe removed about 15 years ago and was on 24mcg before my surgery to totally remove my thyroid.  I had been diagnosed with hasimoto disease.  I started losing my hair at the start with 100 and then 125 but it has gotten worse now after they went back to 112 and now 125  I have blood work done next week and it will be interesting to get the results.  they ordered free t4 and tsh and I requested free t3 to also be done. I had no problem with my hair till after the surgery
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Avatar universal
The heart palps were most likely the meds.  Palps can be a symptom of either hypo or hyper.  I don't know why doctors don't get this.

They didn't test ferritin as part of your iron panel?

Which levo are you on?  All the different brand names and the generics contain different fillers (inactive ingredients).  Some people are sensitive to these fillers and a simple change of brand or from generic to brand or vice versa helps symptoms.  

So, you were only on 25 mcg prior to surgery.  You couldn't have been very hypo???  Was your hair falling out then?  Do you notice it getting better or worse when you increase or decrease?    
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Avatar universal
Iron Binding   calculated TIBC 303   250-450
IBC   Serum   68   35-145

unsaturated IBC   235  155-300

Calculated iron sat   22  20-50
I was on 25mcg before my surgery and after was put on 100 and within a week changed to 125  in less than 10 days my TSH dropped from 11.290 to 1.31 and it has been a roller coaster ever since.   I told the dr that I was having heart palpatations after they put me on 125 and she said it wasn't the meds.  I ended up in the ER with symptoms of Graves disease and they had to lower my meds to 112   I ask if they put me on to high a dose to begin with instead of gradually upping the dosage and the endo said NO
After being on 112 for a couple months they went back to 125 and not having the palpatations but not feeling well and biggest thing is my hair is falling out BAD   Thinking of getting a wig can't seem to make them understand the problem   Wondering if it is partially the levothyroxine

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Avatar universal
Your thyroid labs really look pretty good.  On 2/24, your FT4 was at 74% of range, which is a little high of the 50% recommendation.  Over 10 years ago, AACE recommended that TSH range be changed to 0.3-3.0.  As you can see, most labs and doctors, including yours, have been very slow to make the change.  So, given that much more reasonable range, I'm kind of surprised your TSH would be that high with FT4 at 74% of range.  However, we don't have FT3, so that could provide the answer to your high TSH.

Going back to December, FT4 was 84% of range, higher yet.  FT3 was at 67% of range, which is right where the guideline says it should be (although that doesn't mean it's right for you, personally).  TSH was even higher than in 2/14, so you can see that your TSH is not correlating with FT4.  When FT4 goes down, TSH should go up and vice versa.

So, it doesn't look to me like you are under medicated, as I suspected you might be, and your FT3 is nicely up in the range, so it looks like you convert just fine, too.  BTW, you should insist on FT3 every time blood is drawn.

I notice they tested TSI.  Had you previously had Graves'?

So, we know that your serum FT3 and FT4 levels look more than adequate.  

Do you think you could actually be over medicated, i.e. do you have any hyper symptoms, especially when your FT4 is up to 84% as it was in December?

Would you post the results and reference ranges for your iron panel?
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Avatar universal
on 2/24/14   TSh 3.24  0.34-5.60   Free T4  1.36   0.58 -1.64

12/12/13   SH 4.37   0.34-5.60   Thyroxin Free  1.42   0.50 - 1.60

Free T3  3.6  2.0 - 4.4

Thyroid Stimulating Imm  60.00  0-139

Only other test were CBC Iron binding   antithroglovulin antimodies   10  0-34
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