# Normal BW But Still Not Feeling Well



## Jphanton (Dec 27, 2015)

I had a thyroidectomy on the 4th. It wasn't cancer, I wasn't hypo or hyper but I had massive nodules that were pressing on my windpipe and esophagus. So the doctor recommended it all be taken out. He blamed the nodules on diet and genetics. The first 10 days I was home, even though I was recovering and battling a sinus infection, I actually felt energized and I was losing weight and doing well. Sleeping a lot but that could have been the recovery, the pain meds, and battling a sinus infection. But after 10 days I started to feel lethargic, no energy, sweats, muscle aches, joint pain, etc. I could hardly make it up the stairs or down without help. I'm on 150 mg of Levo. The dr sent me to have blood work drawn and it was normal.

T4, free 1.64 range 0.82-1.77
Tsh 1.220 range 0.450-4.500
T3, free 3.3 range 2.0-4.4

He refuses to change the meds, actually said I should go for a sleep study. After talking to his nurse I realized I wasn't taking the meds right like on an empty stomach and by itself. She said that was probably why I felt so bad which didn't make sense because the blood work was normal. But I started taking the meds properly anyway to see if it helped. While I don't have muscle aches anymore or joint pain, I still feel terrible. I have no energy, I'm tired all the time, sweats. And two days ago I noticed I started gaining weight. To the tune of 1 lb a day. Does anyone have an idea as to what could be going on? Maybe how I can find a new doctor? Other tests I can run? Experience with something similar?


----------



## Lovlkn (Dec 20, 2009)

> I'm on 150 mg of Levo. The dr sent me to have blood work drawn and it was normal.
> 
> T4, free 1.64 range 0.82-1.77
> Tsh 1.220 range 0.450-4.500
> ...


Have you had a Vitamin D, B-12 or ferritin test run? Being low in any of those would cause hypo feelings.

When your labs were drawn - when did you last take your replacement medication?

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.


----------



## Jphanton (Dec 27, 2015)

I haven't had those tests, no. I left a message for my dr's nurse and one of the things I had asked was if there were any other tests I could do. I haven't heard back yet. And while I agree those things could cause tiredness and low energy, I don't see the coorelation to weight gain. Prior to my surgery I had read weight gain was a common complaint and that it's usually due to incorrect dosage or something of the like. At first I was losing, now I'm gaining. And quite rapidly.

I had taken my medication about an hour before taking the blood test.

My neighbor is a pharmacy tech and she told me the dosage I'm on is actually quite high and that Levo is one of the best meds out there. So is it just me? Am I crazy?


----------



## joplin1975 (Jul 21, 2011)

150 isn't high, depending on your weight and activity level.

Levo is a great drug for some people (me!), but not for others. There are no hard and fast rules with thyroid meds, if you ask me.


----------



## Jphanton (Dec 27, 2015)

I'm 185, almost 186 as of this morning. So that's 3 lbs I've gained in 3 days. And I'm 5'6" so I'm overweight. Although I haven't gained in several years and actually had lost some since buying my house and having to mow and walk up and down stairs and stuff. But I'm fairly inactive. I mean I'm no couch potato typically like I get up and do stuff around the house and go up and down my 2 flights of stairs all the time (curse of a 3 floor house). But I'm not actually like exercising every day or whatever as in walking or getting on the treadmill. No motivation when you're tired constantly.


----------



## Jphanton (Dec 27, 2015)

So then why the weight gain? And a lb a day? I mean that's crazy right?


----------



## fttfbass (Jan 8, 2014)

It doesn't look like you're converting the T4 meds into Free T3 all that well, judging by your Free T4 being pretty close to the top of the range and Free T3 only a little above the mid point of the range. It probably wouldn't be a bad idea for your doctor to decrease your Levo a little and add in a small dose of T3 meds.


----------



## jenny v (May 6, 2012)

Have you ever had a reverse T3 test run? Sometimes when your levels look normal but you have high rT3, it means the medication isn't being used by the body and hypo symptoms happen.


----------



## joplin1975 (Jul 21, 2011)

I agree with fttfbass, but also think you need to remember you *just* had the surgery. It takes months and months and months for things to stabilize.


----------



## Jphanton (Dec 27, 2015)

He's decreasing my meds to 100 mcg and wants me to retest in 6 weeks. Will that help?


----------



## Jphanton (Dec 27, 2015)

I'm confused. If the doctor decreases my dosage won't that make my hypo symptoms worse? Isn't he essentially decreasing the hormones which would play into being hypo? His nurse said no, that it works the opposite. A decrease should alleviate the symptoms. But that's not what I'm reading online. Online it says the higher the dosage the more risk you run of being hyper. What do I do?


----------



## Jphanton (Dec 27, 2015)

No Jenny I haven't had a reverse test ran. I asked about additional tests and be just responded to reducing my dosage. And joplin, I can appreciate that but I'm not ok gaining a lb of weight a day. I'll switch doctors before that happens. I can handle the tiredness and lack of energy but I draw the line at gaining weight.


----------



## joplin1975 (Jul 21, 2011)

Jphanton said:


> And joplin, I can appreciate that but I'm not ok gaining a lb of weight a day. I'll switch doctors before that happens. I can handle the tiredness and lack of energy but I draw the line at gaining weight.


Truuuuuuuuuuuuust me, I understand. I gained a total of 27 pounds after my TT. It was absolutely not fun. I am an athlete and never experienced that kind of loss of control with regard to weight in my entire life. I get it. I do. (And, by the way, the weight came off once I was properly medicated. All in all, it took 18 months to stabilize.)

To answer your question, I don't think you should decrease your levo without adding cytomel.


----------



## Jphanton (Dec 27, 2015)

Well ok acually feeling better today and I lost a lb overnight. So I'm not sure I want to switch anything at this point. Other than maybe doctors. How do I go about finding a good doctor in my area? This doctor's office has been terrible to deal with.


----------



## SandSpen (Jan 15, 2016)

Your situation sounds just like mine. I had a complete thyroidectomy -- I wasn't diagnosed with anything the nodules were so large and I was losing my voice. It was not cancer. That was two years ago. I just now found a doctor that did complete testing on me and I am not a converter to T3. So they have added T3 to my meds. There is a Thyroid website somewhere that lists doctors that do complete testing and prescribe T3 meds. I went to five doctors before I found this internal medicine doctor that tested all my hormones. I am amazed that so many doctors do not look at T3 levels. You have to be your own advocate and educate yourself.


----------



## Jphanton (Dec 27, 2015)

Ya this doctor's office has been a nightmare to deal with. The doctor has been only a little above average in my opinion with staff that is rude and incompetent. So for that reason alone I'd like to find a different doctor. Unfortunately I don't have the money to pay a different doctor since I'm now paying the hospital and anesthesiologist too for the surgery but if I have to I will.

So do I just stay on the 150 mcg since I feel better today and actually lost a little weight? Do I call and ask for a reverse T3 test and see if I'm having issues converting? Do I get on the 100 mcg and ask that he give me Cytomel?


----------



## Jphanton (Dec 27, 2015)

And thanks SandSpen, glad to know I'm not the only one out there. I was feeling a little odd not having a diagnosis. I need to find a doctor that will look at my hypoglycemia, my chronic miscarriages, my history of menstral issues, my acne and oily skin issues, my weight, absolutely zero libido, hypoplasia, a bout of hydosalpinx, my history of lethargy, and now this and find out if there's any correlation. If there's something else at play here causing all of this. And I'm only listing these out in case someone happens to see something and have info to pass along about it. I have allergies which didn't start until puberty and acid reflux and asthma. I'm a hot mess. And yet I wasn't hypo or hyper, amazing right? Would be nice to know what would cause something like this and if there's a general, overall fix in proper medication.


----------



## SandSpen (Jan 15, 2016)

In my case it looks like I had estrogen dominance which I think suppresses T3. If your estrogen and progesterone are not balanced the meds don't work right. I had luck with a female internal medicine doctor that looked at the complete picture versus and endocrinologist or a GP. She also told me to eat two brazil nuts every day because they have selenium which helps with the T3. I almost cried when I talked to this doctor because I have been miserable for two years. I had not been right since they removed my thyroid and it was so frustrating.


----------



## Jphanton (Dec 27, 2015)

I had blood work done by my GYN around August of 2014 because I wanted to know why I had 3 miscarriages. Everything was normal. Progesterone, testosterone, estrogen. He found nothing wrong. Which I was surprised given all the issues I have. But I do think an Internist may be the way to go.


----------



## Jphanton (Dec 27, 2015)

I have an appt with a female internist who specializes in Endocrinology and Diabetes & Metabolism. She is also an assistant professor at one of the universities here. 16 years experience and has 4.5 out of 5 rating. Which doesn't mean a whole lot as my ENT doctor had a good rating too. My appt is next Thursday. So yeah!!


----------



## Jphanton (Dec 27, 2015)

Update: I went to my new doctor this morning and she said my thyroid is good. The dosage is perfect, she wouldn't change anything. The Tsh is good, the T3 is in the middle of the rage so it's working. BUT she did diagnose me as insulin resistant (also on the verge of being pre-diabetic), vitamin D deficient, and with PCOD (polycystic ovarian disease). So she put me on Metformin and 4,000 IU of Vitamin D3. She said just to give it more time, that my symptoms are normal as I adjust to the thyroid meds. I get my blood drawn again in 2 weeks and we will go from there.


----------



## Jphanton (Dec 27, 2015)

I'm still feeling terrible. I tried to go to a family function Saturday and had to leave early because I hurt so much. I still can't go up and down my stairs without struggling. I get winded easily. I have no strength. I can't lift things like I could before. I have no energy. I'm tired even after sleeping 10 hours. My joints still hurt; my hips and my knees. I feel like crap.

A couple of red flags about the new doctor is that she ONLY focused on the Tsh, said the other numbers don't matter since I no longer have a thyroid. She very clearly didn't want to run any further thyroid tests and I didn't push her. I did ask about getting an answer because I'm still off work and she was incredulous about why I wasn't working. Guess she didn't hear what I said about feeling bad. I can't even make it through the grocery store without feeling weak and hurting. And she told me my joint pain wasn't a symptom of thyroid issues.

So I went back to the first doctor, left a message for his nurse and asked if he would please call in a lab order for a full thyroid panel. I didn't even make it through the message before I started crying. I'm just so frustrated. I still haven't heard back which is also frustrating and reminiscent of why I switched doctors to begin with. I'm sick of feeling this way. I want to feel normal again. And I have no idea how to find a doctor who will investigate this further. I want to try this Cytomel to see if that helps. I'd like to have my full panel tested. I've been on Metformin and Vitamin D3 supplements for 5 days now and while the Metformin has helped curb my appetite and stabilize blood sugar that's the only hanged I've noticed. So I know this has to be my thyroid. I don't know what to do.


----------



## Jphanton (Dec 27, 2015)

Doctor who did my surgery finally agreed to run a full thyroid panel. Then hopefully I will get some answers.


----------



## joplin1975 (Jul 21, 2011)

I'm hoping you get answers too! When are the results expected to be back?


----------



## Jphanton (Dec 27, 2015)

I go tomorrow to get the tests done and then 24-hrs after that we should have the results. She said some can take a week to get back. I asked about prescribing T3 but his nurse said he wanted to get the blood work back first and then I'd have to make an appt to see him and talk to him about it. By she did say he's prescribed Amour before so he may not have any issues doing it for me. At this point that's the only thing left to try right?


----------



## Jphanton (Dec 27, 2015)

I've had surgeries before and never have I felt like this. In fact the first 10-days after my surgery I felt great despite having a full blown sinus infection and just having had surgery. Then 10-days in bam! And I've felt like this ever since. Some days are better than others.

I would prefer to not go back to the same doctor who recommended a lower dose but considering he's the only doctor I've found willing to order a full thyroid panel and then some for blood work, I'll take it. He's also prescribed Armour before so that means he has experience with patients who've had T3 problems. My problem is his staff. They're rude and incompetent. I do have an appt with a family doctor who has prescribed Cytomel on Friday so she's my backup plan. You can look online and find what doctors prescribe specific medications. That's how I found her. I will also ask her about ordering tests for vitamin deficiencies.

I know absolutely no one who has thyroid issues or believe me I'd be asking them who they see. I've scoured the Internet for thyroid specialists in my area and the few I found weren't covered by my insurance. So here I am. I looked into ordering my own labs online but I don't have the money for that. And it's not necessary since my doctor finally conceded to ordering them for me. I use the same lab and their test ranges do not change fortunately.

The problem is getting my doctor to treat the symptoms and not the numbers. And to stop telling me to give it time. I don't have time when I can't function from day to day. I'm out of work and need to be getting back to a normal life.

And unfortunately no the Vitamin D hasn't helped me. Perhaps 4,000 IU's aren't enough. Should be somewhere around 6,300 IU's from my calculations. But that's made absolutely no difference to how I feel. I wish.

And thank you Lovlkn. I rely on this board because I don't really have anyone else to go to about this. It's very frustrating.


----------



## Jphanton (Dec 27, 2015)

So I just went to pick up my lab order and no where on there does it show Reverse T3 which I specifically asked my doctor's nurse about when we talked yesterday. I went back and she tried to tell me that the RT3 is part of the TPO test and we got into an argument about it. She rewrote the order to add the T3RU test and tried to tell me that it's the same as the RT3. I swear they've never heard of Reverse T3. So I just left her a message which I won't hear back on until Friday night about why they don't do Reverse T3 testing and if they can tell me who does. I will still go have this blood work drawn but it isn't what I asked for. And the doctor I was supposed to see Friday, well her nurse called and said she isn't comfortable prescribing Cytomel or dealing with thyroid issues. So I'm back to square one.


----------



## Lovlkn (Dec 20, 2009)

> I do have an appt with a family doctor who has prescribed Cytomel on Friday so she's my backup plan.


Why not have this doc treat you?

My doc is a DO and I showed up with wheat I am currently taking - after dealing with several MD's who were constantly trying to decrease my dose based on TSH.

If you want a new doctor - you have what you need now - Cytomel, I found that showing up to a new doctor already taking what I wanted to be prescribed the best option. Um... fill all available prescription refills until you get to your set dose. I also found having a supply on hand helped if I got in a pinch and could not get a doc to prescribe.


----------



## Jphanton (Dec 27, 2015)

The doctor I was supposed to see Friday, her nurse called and said she isn't comfortable prescribing Cytomel or dealing with thyroid issues. Whatever website told me she had prescribed Cytomel before was incorrect, she said she's never prescribed it. So no I do not have a new doctor or an alternate doctor or a prescription for Cytomel. The only medication I am on currently is 150 mcg of Levothyroxine.


----------



## Jphanton (Dec 27, 2015)

Update:

So I finally got my original doctor to run a full thyroid panel complete with a reverse T3 test. Here are my labs:

Free T4 - 2.78 (range 0.82-1.77)
TSH - 0.025 (range 0.450-4.500)
Free T3 - 4.9 (range 2.0-4.4)
RT3 - 25.3 (range 9.2-24.1)
Cortisol - 26.1 (not sure what the range is; it shows normal on the lab report and for range to see comments but there aren't any comments. In my appt with him he said it was high)

The other tests were normal but there's too many to list them all here. He also ordered a CBC panel which was all normal.

I'm was on 150 mcg of Levothyroxine from my surgery on 1/4 until the test on 2/17. My last labs on 1/19 showed normal ranges but I started feeling bad around 1/15 or so. At any rate he said I am hyperthyroid as in my dosage was too high but my adrenals were producing enough cortisol to make me feel hypothyroid. (96.1 body temp, weight gain, joint pain, muscle aches, etc) but I've been having heart palpitations when I go up stairs to the point I feel like I'm going to faint. My hearts racing and I get extremely light headed, my legs turn to jello. So he said I'm definitely hyper. He told me to stop taking all of my thyroid meds until Saturday and then resume at 100 mcg of Synthroid instead. Give it time but if I still continue to feel bad then he will start looking at what else is going on. He said he can't rule out a bigger issue but needs to get my numbers normal before he can look any further. What he doesn't know is that my 2nd doctor got her blood work before he did and had already switched me a lower dose of 137 mcg of Levothyroxine. I've been on that since 2/19. So hopefully I'll be gettig some relief sooner than he thinks.

Question, does anyone know anything about Thyro-Gold?


----------



## Jphanton (Dec 27, 2015)

And all of this is ironic because he wanted to put me on 100 mcg of Synthroid 4 weeks ago and I said no because I thought it would make me more hypo, I thought I was hypo and reducing my dose would make it worse. That and the doctor I went to for a second opinion said the dose I was on was fine and not to decrease it. I could be 4 weeks ahead of this thing if I had just trusted my original doctor more.


----------



## GandKsmommy (Feb 15, 2016)

Your story kind of sounds like mine. I had my TT in June of 2011 due to Graves and large nodules. I did great afterwards. I had two successful pregnancies back to back. I hike 4 miles up hills the day I had my son and was cycling within 2-3 weeks after each of my births. I started on 88 Mcg, but 4 months post partum with my son, I was out on 100mcg. 3 months post partum with my daughter, I thought I was hypo, but my endo said I was in the normal range TSH 2.6. I felt tired a lot and asked about having a more detailed thyroid panel, but he dismissed my requests. 9 months post partum, I could not sleep, but was tired, had brain fog, panic attacks, bad pjs, etc. I had my TSH tested and it was 22. This dr raised my levo to 125 Mcg. I am 104 lbs. Angry, I went to a functional medicine dr 4 weeks later. My TSH was .79, free t4 1.6, free t3 2.7, reverse t3 25. She gave me 15 Mcg t3 on top of my 125 Mcg levo. I did well at first, but my body could not handle the t3, so I weaned myself down. I decided to try a different endo, because I felt like I was hypo. Brain fog, very fatigued, mood swings, cold, etc. He would only test TSH and free t4. My results were TSH .05, free t4 1.8 (.9-1.7). He said I'm subclinically hyperthyroid and to take a half a pill on Sunday's. He does not think that is what is causing my symptoms though. I read that TSH aids in t4-t3 conversion. So, if a persons TSH is low, they will not convert as well. I really hope he is wrong and backing off my dose a bit will help these symptoms. It's depressing. Keep me posted on how you are doing and I will do the same


----------



## GandKsmommy (Feb 15, 2016)

My most recent blood was taken 12 hrs after my last dose too. levo usually has a peak 4 hours after a person takes it. Previously, I would get my blood test 4 hrs after my last dose, but this time around my schedule would not allow it.


----------



## Jphanton (Dec 27, 2015)

Thank you GandKsmommy! I will keep posting updates. I started back on my meds today, but it's 100 mcg of Synthroid. I'm not noticing any changes yet but the doc did say it could take a week or two. And yes, please keep my posted. Finding the right doc is hard. I found one but they don't take insurance and I'm not shelling out $700 just to walk in the door. So since my first doctor is willing to work with me I will stick with him for now. I've considered switching to Thyro-Gold but for now I'm going to give this Synthroid a chance. If Thyro-Gold didn't work I need to know what dose of medication to go back to.


----------



## GandKsmommy (Feb 15, 2016)

You are welcome, thank you! I have spent a lot of money out of pocket and do not feel like I am any better. I am torn because this dr will test whatever I want, but it will cost me 250, plus all blood tests. She also wants to do a stool and saliva cortisol test, which is another 300. She thinks I do not absorb as well. Who knows anymore. I read a book called tired thyroid that is really good. I highly recommend it. On average, She believes that a person needs about 100 Mcg t4 and 9 mcg t3, if they don't have a thyroid. She also has a blog


----------

