I think I am getting too much Synthroid. I have recently made some lifestyle chages (mainly cutting out fluoride sources--from drinking water and dental products). In the past 7 months, my doctor has reduced my Synthroid dose down from 150 to 137 to 125 to 100(just this week). My most recent TSH test came back at .288 this week--the previous TSH test was .18. I don't know my t3 and t4 numbers--I have an endo appointment next week. I am having debilitating exhaustion, flu-like symptoms, breath-catching, anxiety, jitters, trouble focusing, and just generally feeling awful. My question is, since I plan to continue these lifestyle changes (by getting a shower filter to reduce more fluoride exposure, etc.), I don't feel like I can wait another 8 weeks feeling like this before my next blood panel. What if I asked my Endo to put me on the lowest dosage (or none) and work up from there with the blood work. I don't even know if I can continue to take this dose for the next week.
Hello friend, truth is only blood labs can reveal what is happening with your system. Contact your endo, to evaluate what's best course for treatment, prior to next blood labs.
If you have difficulty, contacting your endo, Etc.... waiting 8 weeks is unbearable for you. You can alway's visit urgent care, whom can perform thyroid labs, consult with your physician/endo. Wishing you well :)
I agree...without FT3 and FT4 results, you are flying blind. Many symptoms can "cross over" and be symptoms of both hypo and hyper. Once on meds, many of us find TSH goes very low, never to rise again, and becomes an unreliable indicator of thyroid status. Your symptoms could very well be hypo (undermedication) symptoms after your dose has been lowered so significantly.
If you can't get your doctor to test FT3, FT4 and TSH in a timely manner, you might consider ordering those tests online (self pay). No doctor's order is required, and the results go directly to you. For approximately $85, you will know much more about your thyroid status. Be sure to order/ask for FREE T3 and FREE T4 as those are different tests from total T3 and total T4. "FREE" must be specified.
Thanks goolarra and AJWS6!
I am hoping to get all of these quesitons answered next week. Unfortuately the nurse only gave me the TSH number, although they did test Free T3 and T4, as well as Vitamin D (since doc put me on a supplement). All the nurse said was that all those tests came back normal... unfortunately I haven't been able to get in touch with the office to get the specific T4/T3 numbrs. After my last test 4 months ago (when I was lowered to 125), my T3 was 2.62 and my T4 was 1.6, which they said was "in range".
I will also have to double check that these were Free T3 and Free T4 measurements! Do you find that you have to ask for these to be done instead of just regular T4 and T3. Is there a reason that endocrinologists don't suggest these? I'm feeling frustrated with medical care these days.
I am headed to the endocrinologist on Thursday (still no word back from them, as I think they probably only work one day a week or something). I have only been to this doctor once; before my levels started fluctuating, my internist was handling all of this.
Anyway, do you have any advice as to what blood tests I should ask for? As I mentioned, my TSH is now .288. I don't have the T3 T4 numbers. Here are those numbers from May:
TSH .163 (range .4-4.0)
(sorry, I don't have the ranges for the T4, T3, they just said they were "in range").
After these tests in May, the doctor lowered my meds from 137 to 125. And now she has lowered me to 100 after my TSH came back at .288.
So I will make sure to get all the specific numbers on Thursday. Any other questions you think I should ask? Thanks :)
It is your right as a patient to have timely access to a paper copy of your labs, and I suggest you start to keep a file of them, with the dose of medication you were on at the time written on the report. To receive a copy of your labs, you must file a written request with your doctor's office, and they must give them to you in a timely manner at no charge. That means getting a copy of your labs at the same time as the doctor does, if you want them. You can FAX the request to your doctor's office or you can mail it or deliver it in person, but you cannot email it. This is HIPPA law. Ask that the request be filed in your chart so that every time you get labs done, you can have them mailed or faxed to you. I believe you can specify that the request be in force for up to a year, then you must renew it. It is infuriating that doctors avoid or delay releasing patient's information to them. It is YOUR blood and you have a right to information concerning it. I want to know what my labs say before I go in to see the doctor, so that I can ask appropriate questions.
You might want to have your vitamin D tested, since you have been put on a supplement. It is not good enough to be "within range". My understanding is that you want to at least be above 60 in the range. B12 is another good test, since many thyroid patients are found to be low. Has your ferritin been tested ? Hashimoto's antibodies ?
You definitely have to ask for FREE T3 and FREE T4. If you are taking birth control or estrogen of any type, you might want to ask for the "FREE T4 serum direct" which accounts for estrogen binding factor as far as I have been able to determine. And be sure your doctor writes the prescription for the labs the same way every time. With the bogus new AACE guidelines, we all may find our doctors kicking up a fuss about the FREE T3 test. I hope not. Also, just a reminder : you should not eat or take your medication before you have your blood drawn, and it's best to try to get the draw done at the same time of day every time you have it done, for the most accurate comparisons. If that means going to the lab to have the draw done instead of at your doctor's office, so be it.
You do have to specify FREE T3 (or FT3) and FREE T4 (or FT4). There are also tests for total T3 and total T4, and if the "FREE" isn't specified, the total is run. Totals are pretty much a waste of time, money and good blood! So, definitely ask for FT3 and FT4.
Without ranges, it's pretty hard to interpret your May FT3 and FT4. Given what are fairly typical ranges for each, your FT4 looks a little on the high side, and your FT3 low. If that's the case, you might be a slow converter and actually need to deduce your T4 meds and add in a little T3.
In addition to those, you might want to ask for antibody testing to see if you have Hashi's. TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies) are the two markers for Hashi's.
I have written all of this down and will bring it to the endo on Thursday. The nurse actually called today to confirm my appointment, so I had her look up my latest results. From now on, I will file the paperwork to have all of my labs sent to me (thanks for the tip!)
These are just regular T4 and T3, not Free T4, T3.
I was tested for Hashi's in April and had an ultrasound, and they said this all came back normal, but I don't have any other details on that. I'm not sure if they tested my Ferritin or B12, so I will ask about that too, as well as the specific vitamin D levels.
I'm just getting up to speed on how to handle all of this and what questions I need to ask. Thanks so much for your help!
I think those are FREE T3 and FREE T4. Those are free, not total, ranges. As you can see, your FT4 is quite high in the range (78%). The rule of thumb is 50% (this doesn't work for everyone, but it's a place to start). FT3 is right on the floor of the range.
FT3 should be higher in it's range than FT4 is in its, and yours is very much the opposite. I think it's clear that you convert slowly and need to add some T3 to your meds. It's often advisable to lower T4 meds when adding in T3, especially in your case where your FT4 is already quite high. The rule of thumb on that is to lower T4 meds 20-25 mcg for every 5 mcg T3 added. This reflects the fact that T3 is more potent than T4.
T3 is brand name Cytomel (and generics). Cytomel is T3 only and is almost always combined with T4 (levothyroxine). In addition, you can opt for desiccated porcine thyroid (Armour, NatureThroid, ERFA, etc.), which contains both T3 and T4. These are meds made from the thyroid of a pig. Both the synthetic approach and the desiccated approach have their advantages and disadvantages.
One of the advantages of the synthetics is that T3 and T4 can be manipulated separately for a "custom" fit. Many doctors, especially endos, refuse to use desiccated (not condoning that, it's just a fact).
T3 is very fast acting and is quickly neutralized by your body if not used promptly (in a few hours). For that reason, most people split the dose into two half doses and take half in the morning with their levo and half sometime in the late morning or early afternoon to avoid a dip in FT3 levels. Desiccated is often split the same way. Be sure to ask your doctor how he recommends taking either.
It's always best when starting a new thyroid med to start out low and work up slowly. This can be especially true of T3 because of its fast-acting and more potent (than T4) nature. Often 5-10 mcg of T3 can make a huge difference in how you feel.
Best of luck with your endo appointment tomorrow. Let us know how it goes.
Thank you!! I will keep you posted. I am looking forward to getting some questions answered at the endo! My son just tested "highly positive" for Celiac disease, so I am a little frazzled and would LOVE to start feeling better so I can focus!
Hi Again! So I just got back from the endo. I also got copies of my labs, etc. She wants to keep my on 100mg Synthroid for 6 more weeks (I started this dose last week, down from 125). I told her all of my symptoms, most of which revolve around not being able to function or think clearly, anxious, fatigue, breath catching.
My labs from 9/10/12 were:
TSH: 0.288 (0.400-4.500)
Free T4: 1.580 (0.800-1.700)
Free T3 2.40 (2.40-4.20)
Vitamin D: 45.2 (30.0-100.0)
It looks like I did test positive for Hashi's back in May:
Here are those results
Thyroid Peroxidase Antibody 551.8 (0.0-9.0)
Thyroglobulin 14.7 (1.3-31.8)
Anyway, she said to continue the 100mg for 6 weeks and then she gave me a script for the following tests:
Comprehensive Metabolic Panel
CBC with auto diff
I asked her about prescribing T3 and she said will probably add that. I don't know, she seems to be waiting on any changes until after my next blood test. Six weeks seems so far away, but maybe I will start feeling better with this lower dose.
You've gotten lots of good info from goolarra already. Just wanted to mention that it looks like your doctor is reducing your meds based on the suppressed TSH level. That doesn't work. When hypo patients take thyroid meds, often they cannot achieve the necessary levels of Free T3 and Free T4 until after their TSH becomes suppressed and the patient is dependent on only the meds. Until that time as the meds are increased, the TSH is diminished and production of natural thyroid hormone is reduced, resulting in little change in the overall level of thyroid hormone in your blood.
Unfortunately doctors with the "Immaculate TSH Belief" think that a suppressed TSH means you are hyper. In actuality you are hyper only if having hyper symptoms due to mainly having excessive levels of Free T3 and Free T4. From the above it looks like you still have hypo symptoms, not hyper.
A good thyroid doctor will treat a thyroid patient clinically by testing and adjusting Free T3 and free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results, and especially not just TSH.
I had similar labs to yours with a very low FT3. I saw much improvement when I reduced my synthroid and added 5mcg cytomel (split twice a day). Over time I've made the switch to armour and am feeling even better. I would start searching for a new dr. You also could talk again to your current dr about the fact that you may benefit from adding a very low lose of cytomel, since your FreeT3 is at the very bottom of the range.
I definitely think I need to get a different endo! I really don't understand why she didn't just prescribe me the T3 now to take with a l lowered dose of Synthroid. When I asked her about T3, she said, "Yes, adding T3 seems to help a lot of women. I am going to add that". But then she said wait six weeks for the blood work. ugh.
Also, when the nurse called back in May with those blood work results, she only told me the doctor wanted to reduce synthroid and add vitamin D supplement. She said the ultrasound, etc. were normal, so I had no idea until yesterday that I tested positive for Hashi's! And then the doctor didn't even explain to me what this meant--she was just surprised I didn't know.
Sorry to vent, it's just so frustrating. But I guess it all starts with a good doctor -- who knew a good doctor would be so hard to find! That's what I'll be focusing on now.
I read the endo my list of symptoms yesterday. Here they are: Debilitating exhaustion, trouble catching breath, tightness in throat, achy/flu-like sypmptoms, frequent urination, irritability, anxiety, shaky hands, nervousness, trouble concentrating, memory issues, neck and shoulder pain, stiff joints, hard time functioning, decreased appetitite, leg cramps. This plus my high blood pressure count at the appointment. I feel like these should have inspired a little more proactive treatment plan from the doctor!
Thanks for listening and for all of your great advice.
Well, she got it half right...she lowered your T4 meds a little. Too bad she didn't just add some T3. The vast majority of the T4 decrease will have stabilized in your blood in four weeks. You might get your labs drawn four weeks after the decrease. At least she has said she would add T3.
Thanks so much. I think I will definitely do the tests after 4 weeks. In the meantime I am in search of a new endocrinologist because I really feel I need more clarity on the Hashi's diagnosis, etc, and overall someone who is more pro-active and a listens to my concerns.
So I have been on this reduced dose of 100 Levothyroxine for 10 days now, down from 125. Sorry, I thought it was Syntroid, but it's Levo. I have still been having the anxiety, fatigue, tightness in throat, nervousness, shaky hands, etc. I also have a splitting headache and achy joints.
Yesterday and today my heart rate has been fluctuating up and down within a matter of seconds. I usually have a resting heartrate of around 60, so the levels are not super high (fluctuating between 60 and 88 last night and 60-112 today). I called my primary physician's office last night, told them all symptoms, and they said come in today. They had the nurse practitioner see me, not the doctor. They hooked me up to the EKG machine and said everything looked ok, except they want me to get an eco-cardiogram because they did notice a variation, but said it was not an emergency and probably not related. I gave them all my bloodwork results, etc. and my list of symptoms, etc., and they prescribed Xanax for anxiety to take while my "dose adjusts". Nurse practitioner left the room to ask the doctor a few questions, but he never came in to see me.
I called my endo last night too (before I called my primary) and she was no help, said it would take more time for the dose to level out, but she didn't have my chart, etc, said to call Monday. I asked her about the T3 again and she said she wanted to wait until she does all of the bloowork in 6 weeks (well, 4 for me).
Any thoughts on whether I should still be feeling these symptoms after being on 100 for ten days?
I think your symptoms are coming more from your very low FT3 than they are from your somewhat high FT4. FT3 is the test that correlates best with symptoms. T4 is the "storage" form of the thyroid hormones. It's only when it's converted to T3 that your body can use it, and with your FT3 level, it's obvious you're converting very little.
It takes 4-6 weeks for the new dose to stabilize in your blood, but it doesn't happen evenly over that time period. The biggest drop in FT4 levels occurs within the first two week, less the second two weeks, and only a little the last two.
There are only two ways for your body to get rid of excess T4. One is to convert it to T3, the other is to convert it to RT3 (reverse T3), which is inert. Converting T4 to RT3 is the body's natural way of protecting against too much FT3. So, if your FT4 level has been too high, it's quite possible that this is what's happened. Your doctor may be waiting to see if your FT3 level actually rises with the decrease in levo. I also may be giving her more credit than she deserves.
My guess is that you are not going to feel better until your FT3 goes up. Yes, your FT4 needed to be lowered a little, but I doubt that will cause a major change in symptoms. However, changes in thyroid meds take time, and trying to hurry the process usually just lengthens it. I'd give it until the four weeks is up to see the trend in your FT3.
Thank you so much. This is very helpful! I think I am just frustrated because I don't understand why my primary or endo cannot take the time to explain any of this to me; instead they just prescribe xanax and roll their eyes. I am now able to access some of my labs from the primary care office. They were only testing TSH and T4. I also now don't understand why nothing was flagged back in October of 2011.
In October of 2011, my lab work was:
TSH 3rd Generation: 0.23 mIU/L (0.40-4.50)
Free T4: 1.5 (0.8-1.8)
They did a comprehensive metabolic panel at that time as well and all was "normal". Also a VITAMIN D, 25-HYDROXY, LC/MS/MS which was all normal.
After that test, my Levo was left at 150.
April 6, 2012:
TSH .18 (0.40-4.50)
Free T4 1.5 (0.8-1.8)
Med was lowered to 137
May 29th results, after seeing endo:
TSH: .163 (.4-4.5)
Free T4: 1.640 (.8-1.7)
Free T3: 2.62 (2.4-4.20)
Thyroid Peroxidase Antibody: 551.8 (0.0-9.0)
Thyroglobulin 14.7 (1.3-31.8)
Vitamin D "Low"-Don't have those labs.
Said ultrasound was "normal: - Don't have paperwork on that.
Med lowered to 125. Told to wait 4 months to retest.
Well, it seems pretty clear to me from the two labs that have FT3 in them that you are not converting well. Your FT4 didn't change much on the dosage changes, Your FT3 remained very low in both cases.
I find it interesting that after your 10/11 labs, your dose wasn't changed, but after your 4/12 labs, it was lowered on the EXACT same FT4. That's a dead giveaway that your doctor was reacting to TSH and nothing else.
Did your current doctor see this history? If so, she really should have realized there wasn't much need to wait another 6 weeks before adding T3. Your vitamin D is still low...many find that with thyroid issues D has to be further up in the range.
The only thing I can say about this doctor is that she has said she'd add in some T3 next time. At least she's doing the right tests and is amenable to using T3 (many of them aren't). If she hasn't seen this lab comparison, I'd certainly present it to her at your next appointment and ask her to explain why FT3 isn't changing and remains so low.
Thank you! The endo did seem to "wake up" a little after seeing these test results. Right now, she wants me to stop taking the meds completely and get a radioactive iodine uptake ultrasound to rule out anything else going on. To me (thanks to your explanations), it seems pretty clear what's going on, but I did schedule the test in two weeks. I don't know if I'll feel any better, but I'm hopoing my heart will stop racing for now.
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