Still feeling no engery

I have been on my medication for one month, Levothyroxine .15 mg.  I haven't lost any weight, initally I lost 10 pounds and then wham with diet and exercise back up those 10 pounds.  I have little energy most days and I cannot get enough sugar, which is not typical of me to eat.  I have been trying really hard to stick with weight watchers, but it is so hard and tempting to eat a fudge bar or two.  I asked for my levels my Free t4 was .60 and my tsh was 5.74, it didn't look like my doctor did a t3.  Any suggestions of how i can advocate for myself.  I did call my doctor and he said just keep taking it.

[laura1967]

When were those last labs done? Before meds or after starting?? You should ALWAYS have follow-up bloodwork done within 6-8 weeks after starting meds or an increase in meds.

[squirt41]

These are the labs after being on the meds for one month.  I have a follow up at the end of this month for lab work, just feeling like there isn't anything I can do to lose this weight and find a happy medium with my energy levels.  I have the beginning stages of Hashimoto's last June they told me, however this July my levels were low enough the doctor started me on medications.  I am confused and frustrated.

[Barb135]

It looks like you might benefit from an increase in your med.  I don't know the lab's reference range for your FT4, but if that were my lab, it would be below range......Also, your TSH is over range.  Your lab is using an outdated range - you should be between 0.3-3.0.  

Try to get your doctor to run an FT3 as well.  The weight issue is very discouraging, I know because I've been fighting it for over 2 years (18 months since diagnosis) and am just now getting my thyroid levels in line well enough that I can lose some weight.  I had to get to the point where I could almost forget about the weight and concentrate on getting well, then the weight started taking care of itself - well, yes, *I* have to eat right and exercise, but at least I no longer feel like I'm fighting a losing battle.  

Hang in there and work on getting well.  You need regular follow ups until your symptoms are gone and your levels are steady......I'd call the doctor back and ask for more help or start looking around for another doctor is this won't help you.  You might benefit from seeing a specialist.

[squirt41]

thank you for you advice.  Perhaps I should see a specialist.  I didn't realize the labs were using an older version of testing.  I am frustrated with my doctor as he doesn't seem to understand.  I saw an encronologist at the Mayo and in des Moines last year.  They both said there was nothing that could be done with developing Hashi.  

[CarolG52]

True, if your anti-peroxidase, ThyrogobulinAB came back higher than 35 & 20 respectively (again ranges vary by lab) than you probably do have Hashi, it won't go away, but the meds can help in eleviating the symptoms!  
Like Barb indicated take charge and make sure you demand all three tests be done every time you get your labs!  Than get copies of them, a lot of providers on now on EMR's and can print your results immediately while you are there!  It is your right to have access to your medical information.
I have heard many, many people here in this forum from all over the world state they show improvement when they start on T3 meds.
Research the internet and get knowledgable about your condition, once you are enpowered with more insight to this disease the better advocate you can be for yourself!
Go slow with the meds, be diligent with your labs and adjust accordingly.
We are all here, in this together!
Good luck!

[squirt41]

thank you for your advice Carol. Barb is right, I just have never been this heavy and with no energy and have three children and no time to sit on my bottom.

[squirt41]

today is a rough day.  Sad, no energy, my throat hurts and have wasted such a beautiful day., I forgot to include that my doctor put me on Cymbalta, have been on this for a year.  I have lipitor for high cholesterol and HCTZ for water retention.  I just want to lose this weight and want to give up.  My doctor is not good at listening, perhaps I need a new doctor.  Lord I sound like one of my clients on this as I write as I work in the area of mental health.

[gimel]

In my opinion treating thyroid patients should be all about symptoms, not just test results.  To me, the very best way to treat a thyroid patient is to listen to symptoms and test and adjust FT3 and FT4 with meds as required to alleviate symptoms.

Please have a look at the post under my name, that I wrote to Sunshine_67.  It might give you some support for your discussion with the doctor.

[Barb135]

I certainly feel for you because I was where you are, not too long ago.  My pcp was not a good listener either and he got extremely rude and arrogant when he found out I was researching my condition on my own and knew a bit about it.  It was actually my ENT who sent me to get tested for Hashi and gave me the referral to my endo.  Then my pcp got even worse, when he found out that my endo had changed my med from what HE had put me on......that was not a pleasant visit by any stretch of the imagination.  

Following that appointment, I decided I was tired of his "bedside abuse" and I have since made an appointment with another doctor to become my pcp.  I will have that appointment on the 23rd of this month.  If all goes well, I may just drop the endo but that's a decision for down the road.  

If you have the option of getting another doctor, that might be the way to go.  We have enough problems dealing with this rotten disease, we should not have to go through all the arguing, begging and pleading with our doctors in order to be treated properly.  

Do take the time to read gimel's posting to Sunshine_67.  It's very informative and will give you "ammunition" for your next doctor visit.  

[squirt41]

Thank you Barb135 and Gimel, not sure how to double post.  Some days I just feel like in a fog and it is so hard to get out of bed.  I want to take diet pills but am scared because I don't want to mess up my thyroid even worse.  I am forgetting stuff andmy concentration stinks and am constipated a lot.  I am a social worker and doing paper work has become challenging for me as I really cannot focus most days.  I hate this feeling.  This summer it appeared I had way more energy and my energy to have sex was higher, wondering if I wasn't hyper through this.  I can't remember the exact from the Endo but my antibodies were really high last June.  thank you all for listening to me whine.  Tomorrow is a new day and will search somewhere for motivation.  And at my next appointment ask for a referral back to my endo.

[squirt41]

tomorrow I have my labs drawn, hopefully I can get an adjustment to ease the symptoms, have a lot of energy the past two days, thinking I am switching to hyper, hastimoto symtoms (symptoms) stink!

[laura1967]

Let me know when you get your lab results.  You may feel temporarily hyper with Hashi's, but your last lab results show you quite hypo still. With hashi's your levels need to be VERY controlled in order to subside symptoms and for your body to heal.
Your Free T4 level should be mid normal range, and your TSH should be supressed to .50-1.0, when on T4 med only. Your dr is keeping you hypo and sick......let's see what happens with this next round of testing. IF this Dr truly knew thyroid, he would order Free T3 testing as well. The Frees are the actual active thyroid hormone in the body. TSH shows pituitary function.
You may need to find a Thyroid specialist so you don't remain sick.
Do yourself a favor and don't focus on losing weight right now. It will take quite a while for your body to heal and for you to start to lose weight.
With Hashimoto's, you have antibodies attacking and destroying your thyroid gland......over time you will continue to lose more and more function of your thyroid. It is imperative to stay on top of the labs every 6-8 weeks and keep up with med increases to stay healthy.

[Barb135]

I agree with Laura - that you should concentrate on getting well before you worry about losing weight.  I know none of us likes that, but I've been where you are.  After about 18 months, I'm finally at a point where I can lose some weight...............

I also would not think about asking for T3 med at this point.  T3 med is usually taken if there is a problem converting T4 to T3 and with your T4 still so low, you really don't know if that's the case or not.  AND when taking T3 med, your Free T3 needs to tested every single time you have blood work.  T3 meds are very potent and can make you hyper very quickly, especially if you don't really need it.  

Sounds like you need an increase in your T4 med so you can start getting well.  

[squirt41]

I am trying to understand so please be patient with me :)  I am thinking is levothyroxine a t-3 med?  I should have the results tomorrow as they don't have thyroid testing in house they send them to Ames, another town.  I am going to ask for a referral.  Thank you both of you for telling me about weight loss and focus on my health, my husband keeps telling me the same thing.  I know I can't focus just on my weight but I don't know what else to do, I am so sad today.  I needed new jeans, typically I wear a 12-14 pending on the jeans, well I sat and cried as a 16 was almost too tight, I have dealing with this now for to long 15 months now.  I just want help, here I sit crying just emailing you two wonderful woman.  I will let you know when the tests come back tomorrow.

[Barb135]

Oh - don't worry -- we have lots of patience with questions, etc.  Most of us have been where you are now.  I can certainly identify with your feelings about the weight issue, I was exactly the same...

I found a book called "If you Eat at the Refrigerator, Pull Up a Chair" -- it's about learning to like yourself no matter what your body looks like.  I've read it 3 times.......and every time I get more out of it.........I can't remember the author right off hand, but will give it to you if you like.  It sure made me think things over a more.............

Hang in there -- we're all here for you..........

[squirt41]

God bless each of you and Barb I would love the author of that book.  I don't have an eating disorder but have always grown up being told I was fat by my dad even when I wasn't and he still tells me to this day in front of my kids.  This is the heaviest I have ever been in my life at 193, I am solid and have always had an athletic build but that didn't satisfy me in fact I never liked my body, abused diet drugs and wonder, did I do this to myself with my thyroid?

Anyway onto another note talked to my doctors nurse tody and she said that he feels my labs are good, he thinks he is giving me to much but we will try this for a year to see how things go.  I don't have my labs yet, asked her to fax them to me but I asked for a referral to an endocrinologist.  She then asked if I wasn't feeling better, told her no I wasn't, told her I have lack of concentration, my nails are brittle and my skin is dry, my hair is falling out, not in clumps but more then usual and my throat hurts most of the time plus the weight increase.  I told the nurse he either needs to do that or increase my cymbalta as I am not dealing well :)  But if I told him my symptoms he would tell me to diet and exercise, or he would refer me to a dermontogist for my skin and hair, thinking um you don't get it. I have been doing that and very faithful, I am lucky to get in 1000-1200 per day.  Any way that is my soap opera for today.  Off to go play softball.

[squirt41]

Okay so today I got my lab results from fax, I failed to bring them home to report, however the nurse made a referral to University of Iowa, she then stated she feels strongly it isn't my thyroid but something else is going on, I said oh really and she said yes that she had a patient in with higher levels of mine and she was symptom free.  And then asked for the referral and then she did and faxed me the sheet, is this all in my head?  I don't know what to think any longer.

[laura1967]

Need to see those lab numbers! Can you get them?

[squirt41]

here are the labs, my doctor only ran two tests.  Free T4 it was 1.89 and my TSH was .01 it looks like, could that be right.  It states an H on my Free T4 and L on my TSH, which I think means high and low.  He stated I was normal, however can this be when the ranges they have for Free T4 is 0.89 -1.76 ng/dl and .35-5.50 UIU/ml.  I have an appointment at the University of Iowa, not sure when as they have to call me to arrange it.  Any help would be great, thanks friends.

[laura1967]

Those labs show you to be into the hyper range....TSH range is .30-3.0....your lab is using old ranges.
The BIG problem is that you could have a conversion issue as well going on and not know it without the Free T3, but most likely your T4 med is too high for you right now.

[squirt41]

thank you that is what I thought also as I have been having some insomnia and energy once again, the engery usually kicks in about 10:00 p.m. lordy, but have lost some weight with working out and eating right.  I am tracking all of my food I eat.  Hopefully something will happen that is good.  Tomorrow calling a specialist at the U of I.  we will see what happens.

[squirt41]

good news I have an appointment scheduled with an endocrinologist on the 13th.  I have been waking up lately drenched in sweat any one know why?

[dpleiman]

The waking up in sweat along with your last labs sounds like the hyper side of hashimotos.. I wouldn't be surprised to see you needing an increase in dosage at some point again.. for now you are in hyper mode from what i can see, if you have hashimotos it'll change back and forth from hypo to hyper.. You should request the FreeT3  and antibodies testing...

[laura1967]

Has anyone ordered an ultrasound of your thyroid yet??  When you go to see this new endo, let him know your neck hurts and you haven't had an ultrasound done ( if you haven't). You need to know if you have nodules, etc or goiter.
Hang in there! This is a rough road for some of us, but it does calm down after a while.
:)