Hypothyroid, new lab results I need help......

[Kelly422]

I've been a hypothyroid victim since 2009, I have suffered over the last few years with all the common symptoms. I found this forum about 8 months ago. I talked to my doctor and asked her about T3 meds but she didn't have the knowledge to prescribe, she recommended an endocrinologist. It took 6 months to get into her office. While I was with my family doc. we tried a higher does of synthroid and I felt better not totally but I felt like getting out of bed and rested. However my TSH test was to low so I had to go back on 75mcg the does I felt better on was 88. I seen the endo. she gave me 50mcg synthroid and 5mcg cytomel T3. I didn't do that though I did my normal 75mcg synthroid and the 5mcg T3. Took my new test about 8 wks later  and my results were:


Thyroglobulin antibodies <20 (<20 IU/mL)
Thyroid peroxidase antibodies <10 (<35 IU/mL)
T3 total 118 (76-181 ng/dL)
T4 free 1.3 (0.8-1.8 ng/dL)
TSH 3rd generation 0.08 (mIU/L) L

If anyone has a thought on these numbers I would sure love to hear your thoughts. I watched a video the other day from some doc in Michigan that says TSH test is inadequate is this true?

I haven't read a whole lot but just discovered that T3 total is of no use and my next labs I will most definitely ask for free T3, thinking total would have this result included it does not.
Anyway so I know my TSH is way low but you know I feel better I get up in the morning and want to address the day the brain fog is gone, hallelujah. I haven't lost a whole lot of weight but I feel better.

So now and, I am not going by the advise of my doctor... I have reduced to 50mcg of synthroid and decided I would try 10mcg of cytomel or T3. Because I want to know what my results will be. I may loose my doc over this but you know what, I'm the one who has to live in this body. Someone out there needs to help me feel better. I can't go back to the way I was feeling I refuse too!

Barb135 if you read this your knowledge would be greatly appreciated!
Thank you everyone!

[Barb135]

I totally understand where you're coming from.  As I said, my TSH lives at < 0.01 and I'm at the point where my endo will not give me increases in med, either, because of it, even though my FT levels are plenty low.

I'm happy to hear that most of your symptoms are gone; that's always a good thing.  But I still can't recommend self medicating.

"I know I need to find a doc to listen to me, I've been reading how doctors us to do a clinical diagnosis back in the day to determine if you had thyroid issues, they need to go back to it plus your T4 and T3 results and cut out this TSH test because it is not right."  Yes you need to find a doctor that will listen to you; unfortunately, that's easier said than done, in a lot of cases.  Doctors did used to make clinical diagnosis and patients actually got well; it was actually following the advent of the use of the TSH test and T4 only med, that fibromyalgia and chronic fatigue were "born".  Ironically, symptoms from both can be eased with the use of thyroid medication, but if levels are "normal", most doctors won't medicate.

"I read just recently it is from the pituitary gland, from only 200 people, this is ridiculous."  I don't understand this comment.  Yes, TSH is a pituitary hormone.  If everything is working properly, TSH stimulates the thyroid to produce thyroid hormones.  What about 200 people?

There are other things that can prevent you from losing the weight...... those could include insulin resistance, peri-menopause, etc.

I'm curious as to where you're getting the extra T3 med, if your doctor won't prescribe it.  Your prescription is only for so many pills, what happens if you run out?

[Kelly422]

Dear Barb,

Thank you for your response, Sorry, I haven't got back with you until now, I work every other week-end Fri-Sat 12 hour shift time to work and sleep, I rarely get on-line on my work days.

Before I had my appt. with the endo I was tested for TSH from my family doctor it was at .5  taking 75mcg of synthroid.
I had tried 88mcg  with my family doc and it was lower than .5 not sure of the result just know it was too low. However, I felt better but she wouldn't keep me at the 88. I started doing some research and read about T3 and asked her about it but she couldn't prescribe because she said she didn't know how to prescribe a proper dose. So, she referred me to an endo. The endo doctor put me on the 50 synthroid and 5 cytomel, the test results listed above are from my current lab results to see how I was doing with the cytomel added. However, I stayed on the 75 T4 and the 5 T3.

All my symptoms went away I feel almost normal again. However my doctor because of the TSH test said it was way to low and would like to see me at 1 and I know when I am there I'm hypo. At the 75mcg of synthroid the TSH test was at .5.

I know that my doctor will not try different variations this is the only way I will ever know and have the opportunity to try a different  dose and I don't think I have over dosed myself, my heart feels fine, heart rate is normal.

My hot flashes have all but stopped one every now and then maybe 1 a week. As, when I was on the 75mcg of synthroid everyday several times a day any slight change in temp and I was flashing, my body could not regulate my temp what so ever. The house had to be at 72 or lower that is very cold here in Florida any higher than that and I was continuously hot flashing and couldn't sleep. Now the house is at 78 and I feel fine no flashing. My hands are warm my feet are normal not hot or cold. I sleep great all through the night. I wake up rested ready to face the day. Before I didn't even want to get out of bed didn't want to do anything; making myself do things. I'm sewing again this is awesome for me. I still don't have the complete desire I use to have but where I am at, is a far cry from where I was.

Brain fog is pretty close to being gone, huge,.. I can think straight again and not be in a dead stare trying to think of what I want to say or what I need to do. I'm not 100% but it is extremely better than I was since I've been taking the T3. As mentioned before I tried 88mcg and all most all my symptoms went away but because of my TSH test it was a no go so pretty much I have figured out I just need that little more to get me closer to normal.

I haven't lost the weight, 20 so #s.  I put it on when I didn't have any medicine for a month, 2.5 years ago and haven't been able to lose it, age doesn't help either.

I know I need to find a doc to listen to me, I've been reading how doctors us to do a clinical diagnosis back in the day to determine if you had thyroid issues, they need to go back to it plus your T4 and T3 results and cut out this TSH test because it is not right. I read just recently it is from the pituitary gland, from only 200 people, this is ridiculous. I thought doctors were so intelligent why can't they see this test is not accurate? I'm not trying to knock doctors I just can't figure this out.

Again, thank you for your response, it is well taken, and thank you for your concern, very much appreciated!  

Kelly

[Barb135]

TSH is totally inadequate to use as a tool for dosing thyroid meds.  Any doctor that uses only TSH will keep you ill.

It's quite common for TSH to be very low (suppressed) when on a thyroid replacement med, particularly one containing T3.  Mine has been < 0.01 for the past 4 years.

How long have you been on your current dosage?  You have to be very careful with T3 med, because it can send you to hyper he!! very quickly.  If I had to make a choice to be either slightly hypo or flip to hyper, I'd darn sure stay hypo.  

First off, I don't recommend self medicating, particularly since you aren't experienced with the use of T3.  We see people get into trouble that way.  Additionally, adding another 5 mcg of T3, without testing to make sure you need it, is a very poor idea.

Even though T3 med is faster acting, it can still take a while for it to really "kick in".  I was on the same dose for several months, before most of my symptoms were alleviated.

I'm actually disappointed that your doctor even gave you T3 med, without testing FT3.

All of that said, I suspect that your doctor wanted you to lower your synthroid from 75 to 50, because of the low TSH, which as stated above is not adequate for dosing medication.

Your FT, posted above, is perfect - right at the 50% mark that we normally recommend.  So whatever synthroid dose you were on at that time, is probably about right.  Now you need to tweak the FT3, but you have to give it time and you MUST retest prior to any dosage increases to make it's warranted.

We all want to get well "right now", but it rarely happens that way.  What symptoms are you still having?