TSH low, T4 High Help!!!

[Fulton762]

Hello, I had my TT in 2005, thyroid cancer, recent thyroid blood tests while on 200mcg of Levothyroxine for 5 weeks are as follows
TSH        0.14   (low)            0.40-4.50
Free T4   2.3    (high)           0.8-1.8
Total T4  13.4  (high)           4.5-12.0
T7           5.1    (high)           1.4-3.8
T3 Uptake  38  (high)           22-35%

I recently went off Levothyroxine (bad idea) and my TSH went to 177.30 and I have been back on it for approx 4-5 weeks now. I explained to the doctor how bad I have been feeling while on 200mcg of Levo and felt better at 100mcg or 1/2 pill a day and asked his advice.

They ran the blood test and he says everything is OK, the 200 mcg of Levo is "fine" I don't think these results are "OK" as I have been going through many "hypo" and "hyper" symptoms.

I am trying to find a "ideal" range for me so I may feel better and this doctor is of no help. Apparently 200mcg of Levothyroxine is too much for me and was curious if anyone has some numbers that work for them? I have taken the 200mcg of Levo for the last 6 years and the numbers have never been this far off, last test- TSH @ 0.98 and FreeT4 @ 1.12 No idea why the change.

The doctor was really only concerned with my TSH as he wanted it very low so as not to stimulate any remaining thyroid cells and keep my Thyroglobulin antibodies low. He didn't seem to care how I may be feeling.

I know they want to prevent the cancer from coming back, but if I have to feel this bad all the time, what's the point?? Even when I "had" cancer I didn't have any symptoms, it was only after my TT that everything started to go bad.

I will start taking 1/2 pill of Levo and not the 200mcg as before and hope for the best. I guess the only good thing about the doctor visit was the blood tests. I know how bad I feel at these levels and I will try to bring them into a more "normal" range.

Thanks again to all the very kind people who respond on this website, you guys and gals are great!!

Richard

[gimel]

I meant to mention that Erica is correct about the dose being on the low side.  Dependent on what conversion factor you use, 200 mcg of T4 is the equivalent of about 2  to 2 1/2 grains of NDT.  So if you start feeling  somewhat hypo, don't hesitate to talk to the doctor about increasing.

[gimel]

Thanks for the feedback.  Great to hear that you may be making some real progress at last.  

[Ericamegan]

Sounds like you are on the right track.   That dose may be a little low for you, but since you've never been on T3 meds before, it's better to start slowly.  Good Luck and let us know how the switch goes!

[Fulton762]

Hello, I went to the doctor you found for me in Pasadena today. He was very knowledgable and spent over a hour talking with me and answering my questions. It seems I have more problems than I thought, one issue was my swollen or enlarged tongue. I may be lacking enough B-12 and as I have been feeling quite bad for the last year, my diet isn't the best. For whatever reason I became intolerant to Levothyroxine, he feels I am not converting T4 to T3, he noted the high FT4 (2.3) on my recent blood test. If I was converting it the levels would be lower, his thoughts.

I am now to take Nature Thyroid (RLC Labs) and get some B-12 shots, plus vitamins my system can absorb. The B-12 shot I got today has already helped my tongue feel better. I've had the swollen tongue thing for quite awhile and no one (ER) or last (Endo) knew what may be wrong. This along with horribe headaches caused by Levo were really annoying.

I will start the Nature Thyroid tomorrow and hope to see an improvement. It appears that I may have had far too much T4 in me and therfore was going "hyper" with some symptoms, but still experiecing "hypo" symptoms because low conversion. makes sense to me.

The extreme sensativity to light and sound is a "hyper" symptom and of course the fatigue is hypo. I was told to stop drinking coffee and any soda, they drain the body of B-12 and B-12 is needed for the brain to work properly.

It appears I had a few problems and this doctor was able to make sense of all my complaining. He likes Nature Thyroid better than Amour and I should take 1 pill twice a day. The pills are 1/2 grain with 19mcg of T4 and 4.5mcg of T3 each.

This will be a big drop from the 200mcg of Levo, but I assume the T4/T3 combo is more potent the T4 alone. I will contact the doctor in a week to let him know how I'm doing and if I go hypo I can always take more.

Thanks again for taking the time to find this location and doctor, very nice experience and I hope I am on the road to getting my life back. I will post more after taking Nature Thyroid.

[Fulton762]

I had my appointment today with a Dr. Simon Barker, Pasadena area. I must say I was quite impressed. The one thing he noticed right away was the results of my last blood test. My TSH was low 0.14, but the FT4 was very high 2.3, it has never been this high. He said it was because of my failure to convert T4 to T3. I am not sure of this, but on 200mcg's of Levothyroxine for the past 7 years my FT4 has never been above 1.4 and I have been feeling pretty bad lately. The doctor prescribed Nature Thyroid which has both T4 and T3.

I was having horrible headaches on Levothyroxine the last couple of weeks so I stopped taking it 2 days ago, the headaches are less severe now. I will start Nature Thyroid tomorrow and hope to see a improvement soon. Doctor said because of my diet and medical condition I was lacking in B-12 and I probably am, I don't eat the right things, so I got a B-12 shot too.

This doctor is a natural type doc (ND) and I am not sure if this type of medical advice is OK or will work for me, but having been to other Endocrinologists (MD) and being told you are OK, your blood tests are fine, I will try Natural type thyroids and vitamins.

I knew I was was hyper by my blood tests, but last doctor said everything was OK. My tongue has been swollen and that could be lack of B-12, I do not have my large intestine and can not absorb nutrients like most people. All I really wanted was to change thyroid meds and at least try a natural thyroid.

I will be seeing another Endocrinologist next month, the natural doctor doesn't take my insurance. But hopefully the B-12 shots, vitamins and nature thyroid will make a difference.

It was so nice to finally find someone who would work with me to find out what does help me and not just read the lab results. I know how I feel and I don't feel normal at all. If anyone is having problems with their meds and symptoms, just don't give up and find a doctor who will listen and at least make a change, maybe all you need is a different brand of medication or natural thyroid.

[Ericamegan]

That dr sounds very promising!  Good luck and let us know how it goes!

[Fulton762]

Hi, I receive information from a very kind person here about a doctor in my area who does test FT3, FT4, TSH, etc. They prescribe natural thyroid and Cytomel if needed. They will work with me to reduce my symptoms with what ever meds I may need. From all the info I can find Free T3 seems to be the most important, but some many doctors just refuse to accept this.

I think I am getting close to figuring out why I feel so bad, the symptoms do change when I change my dose, so it's not just in my head. It may be I don't convert T4 to T3 as I should and just a small amount of Cytomel will help.

I have a appointment next week with the new doctor and will post some comments on how it went, thanks again for the reply!!

[AJWS6]

Hello friend, I agree with others.  Find yourself a different physician.  I am not satisfied with my current endo's treatment, I did extensive research and found one out of town, 3 hr drive round trip.  Most physicians/endo such as we have are old fashion, set in thier way's.  

I to have low TSH, high FT4 = hyper !  I am on 200mcg levo too.  But no cancer.  

Wishing you well on your journey :)  

[Ericamegan]

Please keep trying to find a new dr.  I just got back from an appt with my dr, who had a Resident following her. She was explaining my thyroid issues and said many times you just have to ignore the TSH.(mine is .01)  The most important test is the Free T3.  Free T4 and RT3 are also important. She said many drs not not believe this, but the research shows FT3 correlate most with symptoms. There are good drs out there and thankfully some new drs are learning this too.  Seems like you definitely need to reduce your T4 meds and add some T3.

[gimel]

So sorry to hear that the doctor is not all that you hoped for.  I have tracked down another prospect in Pasadena.  Sending info by PM.

[Fulton762]

Hi
This doctor is 75 years old and has been in practice for 50 years, so I don't think he is really up on the latest science. I had mentioned the online research I had done, those who have told me about their experiences with thyroid meds and what I thought, he said other patients with blood levels like mine are fine and I should be too.

I thinks doctors in general brush off patients complaints because they don't have any answers and when I said others have had FT3 tests done and the results are online he said there is no test method he knows of that really works.

I gave it my best shot and will look for another doctor, I will pickup the 150mcg of Levo today and try it. I can go up or down with the meds and just see what works best.

When I did mention my symptoms to him which involve headache, fatigue, blurred vision, ringing in my ears, feeling zombie like, he said I should see a ENT.

I find it amazing that before I was on T4 meds I was fine and they can not bring themselves to admit it may be the T4 meds and dose.

Thanks for the reply and I will post any new info I have.

[goolarra]

When did he go to med school, and has he picked up a medical journal since???  FT3 didn't USED TO be able to be measured accurately...that was a "few" years back.  T3 is the ONLY form of the thyroid hormones your cells can use...and that should be of "no concern".  OMG

II agree with you that it will probably take more than a week to notice the difference.  The last time I was overmedicated, my endo advised me to stop meds for three days, then resume at a lower dose.  Maybe you could see what your doctor thinks of that approach.  In those three days, most of my worst hyper symptoms went away, but it was close to two weeks before I felt completely back to normal.

Have you considered a new doctor?  If that's his attitude toward T3, he's not going to help you.

[Fulton762]

Hi Barb135
I just spoke to the doctor and he insists Free T3 can not be measured accurately and the amount in your system is 3/10 of 1% so it's really of no concern. He states those who say Free T3 should be checked have a ax to grind and don't know what they're talking about. (His words)

So we went round and round about how bad I feel and what the heck he can do. He did say since it's been 7 years since my TT and I don't show any signs of a recurrance of cancer we can reduce the dose of Levothyroxine and bring my TSH up a bit. He wants me to try 150mcg of Levo and says I should feel a difference within a week.

I tried reducing my dose months ago to 1/2 pill or 100mcg of Levo and it took 5-6 weeks to notice a change, I did feel better and told him so. Apparently he forgot that.

He states the main issues with my blood tests is to look for markers of a recurrance of cancer and then try to lessen any symptoms, but it took me sending angry e-mails to get that response.

Anyway, I will try the 150mcg dose and I really doubt I will notice any difference in a week. He wants a blood tests in 6 weeks and we will talk about other thyroid meds to reduce my symptoms.

The only way I got a response from this doctor was when I got angry and told him exactly how I felt. He really likes to talk and I had to speak over him to say what I wanted.

I appreciate the reply and hopefully my new dose of meds will help, thanks again!!

[Barb135]

TSH is typically suppressed following thyroid cancer to prevent recurrence; however, your FT4  is too high.  You should be getting tested for Free T3, rather than the T7 and T3 uptake; those are considered obsolete, and FT3 correlates much better with symptoms that either TSH or FT 4.

Many people, myself included, find they do best when FT4 is approximately, mid range and FT3 is in the upper 1/3 of its range. Some people on T4 only med will have higher FT4 in order to get FT3 up where it should be. I find that I feel best with FT3 around 3.7 or a bit higher (range 2.3-4.2)

What symptoms do you have? You really need to get tested for FT3.