Omg. Sounds like me! I am trying to figure this out. I don't have Hashimotos but I feel like I go hypo to hyper and back again. I am on synthroid 125 and cytomel 5. After pressuring my doctor for relief she wants to drop the cytomel and increase the synthroid to 131 Do you have any aches?
I have the same problem. Low TSH (0.03), low T3 (2.47) and barely mid range T4. All my symptoms are of extreme hypo, but Endo says I need to lower dose because TSH is so low. If I raise T3, I have hyper like symptoms in my brain (I get emotional and anger easily) but no other hyper symptoms. I've gained 20 pounds in the last 6 months. I am 61, and I've been fighting to get well for nearly 25 years. I feel like giving up. I had RAI for Graves 25 years ago and my life has been hell ever since. I sure am sorry that others are going through this, but glad to see I am not just totally whacko and that others have a similar issue.
Gzsimo and deb62gee - I'm glad also to hear I'm not alone! I have some aches but it isn't a major problem.
I have mostly hypo symptoms, but also anxiety and heart palpitations. I have heard that your adrenals can do this (go into overload and secrete too much adrenaline) when your T3 is too low to try and over compensate. This would explain hyper symptoms when hypo. Anyone else heard of this?
I wake up every morning with no energy but in the middle of a panic attack that lasts most the day. Can't continue like this. Doctors get mad at me when I describe my symptoms. It's as if they are upset with me because the meds are not working - like I'm making this up!?! Always feel nervous going to the Endo because I know that I will be fussed at and told that I'm in range. It does make you feel like you are losing your mind.
I feel that my Endo should have run a Ft3 along with the TSH especially since my Ft3 has remained so low. The frustrating thing is there doesn't seem to be any charts on why the TSH would be low along with the low Ft3.
- dragging today with anxiety.... it's a terrible feeling.
Your symptoms all sound hypo to me.
I also don't see a pituitary problem. Meds, especially any meds containing T3, often suppress TSH. It becomes an even more useless test, and you simply have to ignore it (and get your doctor to do the same), and go by FT3 and FT4.
Your FT4 is only at 25% of range, and based on when many of us find symptom relief, it should be around 50% of range. Your FT3 is barely in range, and the guideline for FT3 is upper half to upper third of range. You're under medicated.
I've been on this forum for years, and I've yet to hear of a single person ever cured of Hashi's. Antibodies can be somewhat elevated with other conditions, so perhaps you never really had it to begin with. Do you have the antibody results you were diagnosed on?
Another possibility is that antibodies sometimes go into remission when the thyroid is effectively dead.
How much T3 and T4 do you take?
Does your endo typically test only TSH?
Ditto Goolarra's comments.
It is most likely that the T3 that you are taking has supressed your TSH. And you are as goolarra stated low in BOTH ranges. And the target rule of thumb as stated above in order for most people to feel well are to have BOTH:
1) FT4 to be 50% of the range
2) FT3 to be certainly above 50% and most like it to be in the UPPER 1/3 which is 66.7% of the range.
As Goolarra pointed out, your levels are substaintially below these target levels. Which clearly indicates that you are most likely undermedicated.
What dosages of T4 and T3 are you taking?
For how long have you been on that dosage?
Do you take your T3 in two dosages or in a single dose every day?
Many people when they get their thyroid regulated and optimized no longer need anxiety or depression medication. BOTH of these are common and consistent symptoms of Hypo.
It appears your endo is ONLY looking at the TSH, and with it being so low due to the medication (primarily the T3) the endo is giving you and the endo has fooled himself that you are HYPER. When in fact the TSH is completely useless because it has been suppressed by the T3 and thus should be ignored completely. And base your dosages based upon your symptoms along with monitoring FT4 and FT3. Making small changes with one of the hormones or the other at a time so you know the results and how they affect you and your blood labs. And walk your way up slowly to feling well.
If you are unable to convince your endo of this, then it is sadly time to find a new Dr. This situation is painfully common with MANY of us here. Some people luck out and find a good Dr right off the bat, others have to go through MANY Dr's until finally finding one who will actually treat and listen to YOU. And not just look at a number on a lab report and ignore anything you say or how you feel.
Thank you for all your comments. Here are the thyroid meds I am on now:
Levothyroxin (T4) 37.5 mcg - taken once daily
Liothyronine (T3) 10 mcg daily - take it twice a day (5mcg at a time)
I have been on this dosage for 5 months.
6 months ago I was on 75 mcg's of T4 (2x what I'm taking now), along with the 10 mcg of T3. My Endo cut my T3 in half 6 months ago because I had the following labs with horrible symptoms of anxiety and heart palpitations.
Labs 6 Months Ago (before cutting my T3 in half)
TSH: 0.111 Range: 0.34 - 4.00
Free T3: 2.6 Range: 2.40 - 4.2 (has remained very low - no matter
the amount of T3 I take)
Free T4: 0.97 Range: 0.70 - 1.37
I'm very confused because even though I was on twice the T4 I am now - my FT3 & FT4 levels have not really changed - they were low then and they are slightly lower now. Only my TSH was really affected by the higher dose of T4. Note: at the higher dose of T4 when my TSH dropped to 0.111 - I felt horrible, panic attacks, nervous, crying - I couldn't function. So if I'm hypo still (based on my low FT3 & FT4) - I obviously cannot take more T4 to remedy it! I feel it's hopeless.
Does anyone think that I have an inability to convert T4 to T3? Thank you for reading and responding!
Sorry! Correction to the above! It was the T4 that was cut in half - My dosage of T3 has not changed in a year.
Labs 6 Months Ago (before cutting my T4 in half)
TSH: 0.111 Range: 0.34 - 4.00
Free T3: 2.6 Range: 2.40 - 4.2 (has remained very low - no matter
the amount of T4 I take)
Free T4: 0.97 Range: 0.70 - 1.37
I'm a little bit confused by your old and new lab results because they are EXACTLY the same which is nearly impossible just from testing varibility.
Your Ft3 amount is the same or nearly the same because your T3 medication has remained the same. It would support the theory that your body does not efficiently convert the T4 into T3. Therefore your FT4 blood lab would be almost moot because so little is converted.
Personally I think your Dr went the wrong way! Anxiety and heart palps are NOT exclusive to hyper and over medication. both of these symptoms are cross over and are common in either hyper or hypo.
I think your Dr is focusing on the below range TSH and combined with symptoms that COULD be hyper resulted in your Dr believing you are Hyper and thus cut your T4 dosage.
The rule of thumb target to feel well is when you have BOTH of the following.
1) FT4 to be 50% of the range or slightly higher
20 FT3 to be in the UPPER 1/3 of the range which is 66.7% of the range.
You are testing at:
1) FT4 to be at 40% of the range
2) Ft3 is at only 11% - DRAMATICALLY low in the range.
So it appears pretty clear to me that your body for whatever reason is NOT converting well at all. Otherwise you'd expect to see the FT3 levels as a percentage of the range to be HIGHER than the percent of range of FT4 and yours is EXACTLY the opposite.
From all of this I suggest that you need MORE T3. But before this I would suggest that you get additional testing. I would be interested in your case to have the reverse T3 to be tested as well as the FT4 and FT3.
I doubt the reverese T3 is high but it is a possibility that the T4 is being converted into RT3 rather than correctly into Free T3.
Please consider this and talk with your Dr about your symptoms and the possibility for a trial to see if you feel better with a small bump up in your T3 medication. If you feel better that is the right track. If you feel worse then you can stop it immediately. The good thing is that T3 is so fast acting that the results either way should be able to be felt and continued or discontinued quickly.
Just one persons opinion!
First, let m say that, with Hashi's, you are losing thyroid function continuously. So your reaction to 75 mcg of T4 six months ago is not indicative of what your reaction might be today. Sometimes, Hashi's progresses very rapidly, and you could have lost a lot in that time period.
Also, bear in mind that TSH is nothing but a messenger from your pituitary to your thyroid to tell it to produce more hormone. TSH causes NO symptoms. As you pointed out, your FT3 and FT4 levels have barely changed.
With FT4 so low in range, it's difficult to comment on how well you convert. There's really not enough FT4 there to convert. In addition, you are taking T3, so that effects your numbers as well.
You aren't taking much T4, so that would explain your low FT4 level. However, we have to wonder where your T3 med is going if you are taking 10 mcg of T3 and your FT3 level hardly changed since adding T3. Is that correct?
Goolarra, that is true. Adding T3 has not affected my FT3 levels. Also my FT3 & FT4 levels were pretty much the same as when I was on 75 mcg of T4 and when the Endo cut it to half. It's as if my body is not recognizing the meds at all.
Plus, my last Hashimoto's levels were low - that's when the doctor told me I was cured of Hashi.
I always have my labs drawn in the morning and I always take my medication about 2 hours before - so the direct T3 pill should have my FT3 reading higher than it is.
I had Chronic Lyme about 4 years ago - which is when most of this began. I was very sick for a couple of years. I first gained a lot of weight - then lost 48 lbs within 3 months - then I gained it all back about 6 months later. Obviously my thyroid going into hyper before it settled back into hypo.
I am at my wits end - I have no energy or enthusiasm for life. So you think I can still have anxiety and heart palpitations and be hypo? Thank you guys for all your feedback - I meet with my Endo this coming Tuesday and I want to be as well informed as I can. I don't want to feel like this any longer if there is a simple solution!
flyingfool - There is a slight difference in the labs from now and 6 months ago. I reposted the recent ones because I had a typo - so maybe you thought those were my old and new that were exact.
In the last 6 months:
TSH: 0.111 then went to 0.32
FT4: 0.97 then went to 0.84
FT3: 2.6 then went to 2.59
Do you have any known gut issues that could be preventing the meds from being absorbed properly? Do you take your T4 on an empty stomach and then fast for half to one hour afterwards? You're right, taking your T3 a couple of hours before the blood draw should have been at about it's peak (not quite).
The other possibility is that your FT4 is so low that you are actually using up all the T4 and T3 you are taking and, in effect, nothing is left over to contribute to the "pool". I just throw this out there for your consideration...meds taken a couple of hours before the draw should still be in the blood.
Anxiety and heart palps are two of those symptoms that are almost equally common with both hypo and hyper.
Before your doctor lowered your T4 to 37.5, had there been any recent meds changes?
There had not been any other med changes. I also am careful to take the T4 and T3 on an empty stomach. I normally wait at least an hour before having anything to eat.
I don't have any gut issues, although the Lyme seemed to attack my gallbladder and it had to be removed about the time I started having the thyroid trouble - could not having a gallbladder affect the absorption?
I doubt that gall bladder (or lack thereof) would affect absorption. I know people who have no gall bladder who absorb just fine.
I think you do need to increase your T4. I would recommend that you do that slowly. Give your body a chance to get used to each increase before you add more. You're at 37.5 mcg, so you have 44 and 50 mcg tablets available. Slow and steady...
Are you on brand name meds or generics? Another suggestion would be to switch to another brand. Some people react much better to one formula than another. All the active ingredients are the same, but the fillers can make them harder or easier to absorb. Tirosint is a gelcap that's supposed to be more absorbable than tablets. I've heard recently, however, that the price has gone through the roof.
Do you take any other meds or supplements currently?
Hi. I'm very discouraged. I met with my Endo yesterday and my cardiologist (hypertension - blood pressure yesterday was 157/68). Fun Day! But the clincher is that my Endo told me that I needed psychiatric treatment :-( which I am getting and I take Lexapro 30 mg and Xanax.
Endo told me that my TSH is in range (however barely) and 1 week before at my PCP it was below range, so it is definitely fluctuating. I have severe hypo symptoms along with all day anxiety and heart palpitations.
Goolarra - you asked about other meds I was on - they are:
Levothyroxin (T4) 37.5 mcg daily (Thyroid)
Liothyronine 10 mcg a day – ½ in am & ½ in pm (Thyroid)
Lisinopril 5mg daily (Blood Pressure)
Lexapro 30 mg daily (Depression)
Trazo-done 50 mg: 2 pills in pm (Depression)
Estrogen Patch (Vivelle-Dot .50): apply a new patch every 3 days
My labs 2 1/2 years ago before I was on any thyroid medicine were:
TSH: 0.65 Range: 0.35 - 3.60
Free T3: 1.96 Range: 2.40 - 4.2
Free T4: 0.45 Range: 0.70 - 1.37
Labs 2 weeks ago:
TSH: 0.32 Range: 0.35 - 3.60 (1 week later this rose to 0.36
so Endo says I'm in range. She did not do FT3 or FT4)
Free T3: 2.59 Range: 2.40 - 4.2
Free T4: 0.84 Range: 0.70 - 1.37
I feel horrible - feel like I can't breathe and now I feel horrible about myself after talking to my Endo yesterday. After years of feeling this way - maybe I am crazy!
I feel like I need to go off all thyroid meds to figure out what my baseline is and figure this out. How can I feel so hypo and hyper at the same time? I know that I can't continue like this.
Should I go off my thyroid meds and see where they actually are according to my body - or is this not a good idea? Thank you.
Sorry to be so long getting back; I've been away for a few days.
My first comment id that the estrogen patch you are on could be throwing off your FT4 readings. When on estrogen, you have to have FT4 by direct dialysis, not by radioimmunoassay. RIA will return a false reading.
I think your labs of 2.5 years ago, prior to meds, kind of tell the story. Your FT3 and FT4 were both well below range, but your TSH was very low. It should have been skyrocketing. It looks a lot like secondary hypo. Currently, both FT3 and FT4 are just barely in range, yet your TSH is still low.
A change in TSH from 0.32 to 0.36 does get you back "in range", but that is a totally insignificant change. If that's what makes your doctor happy, then you really have to lose this doctor. It's inexcusable to not test FT3 and FT4 every time labs are drawn. Your doctor needs psychiatric help if he thinks a change in TSH of 0.06 makes a difference.
I really think your labs of 2.5 years ago are a baseline. You are going to feel even worse if you go off of meds. If you do have secondary, and your TSH doesn't go up off meds, your doctor is just going to tell you that you don't need the meds. I think stopping meds would be going from the frying pan into the fire. You need to find a doctor who isn't hung up on TSH and will help you.
Thank you Goolarra!
It's been frustrating - I made an appt with the Holtorf Medical Group since I have been through 4 Endo's with all of them only worrying about my TSH.
I will drive 4 hours to go to Holtorf - but, I feel like I really need to. Crossing my fingers :-) !!!
I am suffering the same symptoms that you are. It feels like my thyroid is oscillating between hyper and hypo. I get what I call "surges" and they can happen at any time. I will be inundated suddenly with headache, lightheadedness, intestinal upset to the point of needing a bathroom immediately, racing heart, and so on. It goes into full blown panic attacks and Xanax brings my vitals all back under control. It is the stuff of frightening. I hate it. I have been dealing with this since Feb 2013. It has worsened since December.
The one thing you and I have in common are we are using the Vivelle dot estradiol patch. My endo has done thyroid panels on me. Since beginning HRT, my reverse T3 has gone from 20 to 25.3 which is above the "normal" range. Prior to beginning Vivelle Dot my reverse T3 was 20. It would appear that the estradiol patch is too much for me (am now down to .0375 and still having surges) causing my thyroid to malfunction and experiencing estrogen dominant symptoms.
Please have your reverse T3 checked. The symptoms we are suffering from are in line with high reverse T3 which can be caused by too much estrogen. My endo has me tracking daily symptoms, and is finding a pattern in which it looks like my body is soaking up the estrogen right away, spitting it out and then the next half of the dosage period I don't have enough estrogen so my thyroid swings the other way.
I don't have the answers but I have an awesome endo and I know between the two of us, we will find out what my body is doing and get me back to Debbie again. Right now, I am afraid to leave my house in case I get another one of these attacks, and they are miserable when they hit. I empathize with you immensely.