What tests is your doctor running? If you have the actual results, please post them with reference ranges (these vary lab to lab and have to come from your own lab report). Is he testing free T3 and free T4 every time you have labs and basing dose adjustments on those, rather than just on TSH?
I'm very sensitive to meds, and it took me over a year to get to a proper dose. We're all different. So, some people get there sooner than others.
Do you have Hashi's? Early stages of Hashi's can be characterized by fluctuations in the levels of hormones your dying thyroid is putting out making dosage tricky.
There's no way to hurry the process...it takes 4-6 weeks for each dose change to reach it's potential in your blood. If you try adjusting sooner than that, you are chasing a moving target and usually end up costing yourself more time in the long run.
Also, a meds history would be interesting to see.
He's been testing TSH and free T4. At diagnosis, TSH was 11, after first dosage, TSH went down to .15, then .14, then 6.5. Free T4 has stayed in "normal" range but has fluctuated with a negative correlation to my TSH. My symptoms/side effects have corresponded to these labs so for now, I'm not especially concerned about that.
I was diagnosed with hypothyroid.
This is a rough timeline (I don't have my labwork in front of me)
6/1 - TSH 5.5 at routine physical
7/1 - TSH 11 at follow-up lab to confirm hypothyroid diagnosis
8/15 - TSH 0.15 after ~6 weeks on .75 mg synthroid
9/30 - TSH 0.14 after ~6 weeks on .50 mg synthroid
11/15 - TSH 6.5 after ~6 weeks on .25 mg synthroid
I'm now on 37.5 mg synthroid and have a lab next week. Feeling pretty rough so I'm hoping the lab confirms what I suspect - hypothyroid. At the 11/15 blood test, I had actually made an appt to discuss how awful I was feeling. Since I hadn't had a period in 6 months and had no sex drive, the doctor suspected pituitary problems and tested FSH and a couple other hormones which all came back normal.
When I get my blood test next week, I am probably going to discuss coming off medication completely for this. I simply cannot tolerate all the side effects any longer. I'm a CPA and need to be able to function at a high level for the next couple months during tax season. 1 year ago, I started an antidepressant which was life changing, but it stopped working when I began synthroid. My BMI is healthy and I've asked doctors about thyroid disease for years since my mother has it, but they always felt my neck and said everything was normal. So I'm wondering how serious my hypothyroid is for it to be worth all the side effects and rollercoaster of medications.
My doctor has said my TSH needs to be between 0.3 and 3.0
TSH is a pituitary hormone and is subject to variations due to any number of factors in the thyroid/hypothalamus/pituitary axis. It's a screning test at best, and meds adjustments should be based on FT3 and FT4 levels. TSH is very volatile, even intraday, so it's not what you want to base dosage on.
"Free T4 has stayed in "normal" range but has fluctuated with a negative correlation to my TSH." I assume you mean that when your FT4 goes up, your TSH goes down and vice versa? I'd very much like to see your FT4 results.
Forgive me if I'm telling you what you already know, but your cells cannot use T4. It first has to be converted to T3. T3 is the biologically active hormone, and FT3 levels correlate best with symptoms. FT3 levels do not correlate with TSH levels. Your FT4 levels can be perfect, but if your FT3 levels are too low, you will still feel hypo. I'd request FT3 when you have labs next week.
What are your side effects specifically?
I sympathize with your frustration (I had a year of it), but if you're feeling hypo on 37.5 mcg, how are you going to feel on zero?
Have you had antibody testing for Hashi's? Have you had a thyroid ultrasound?
Have you checked for drug interactions between your antidepressant and your thyroid meds? Do you take them at least four hours away from each other?
Has your doctor given you the two Hashimoto's antibody tests ? And in my opinion and according to many of our members plus Dr. Arem' s book, the FREE T3 test is absolutely necessary. Most people feel best when their TSH is at the low end of normal, their FREE T4 in the middle of the range or slightly higher, and their FREE T3 in the upper third of the range.
When you post you labs, it is hard to interpret them if you don't post the lab ranges, as every lab can be different. .3 - 3.0 is the best current standard for TSH. However most of us feel that the FREE T4 and FREE T3 are the most valuable tests, since they show the amount of circulating hormones actually available for your body to use.
I have actually been struggling to get my medications to the right level for me since 2009. And yes, I get blood tested every 6 weeks, STILL, because my meds are still not quite balanced. I have a current post up about my latest labs if you want to see the easiest way to post your labs for others to interpret and the level of fine tuning that is sometimes necessary.
I can tell you that depression is an extremely common symptom with hypothyroidism, and with your TSH there is no doubt that you are hypo. I was on and off antidepressants for years while they told me nothing was wrong with my thyroid. None of them worked and in fact most made me feel terrible. When I started a combination of T4 and T3, the depression lifted in 3 days and only returns when I am under-medicated. Thryoid hormones conduct the passage of seratonin through the brain, so it really affects mood. You can't feel good without seratonin !
With HRT, estrogen has a slight binding effect on T4, often requiring you to take a slightly higher dose. The FREE T4 DIRECT test has a wider normative range and is supposed to accommodate the binding factor. That's the version of the test my doc prescribes for me. It's really common to have a wonky thyroid and/or changes in your medication really effect your cycle.
Unfortunately there's nothing that can speed up the cycle of testing every 5 - 6 weeks....that's how long it takes the T4 to build up or decrease in your body. And it's very strange that a doctor would think that feeling your neck is the proper way to diagnose thyroid disorder.
One more thing : I've found it very helpful to write the dose of medication I'm on on every lab report, as well as the date I started taking that dose. It can get complicated when you're having a lot of testing.
Symptoms when TSH was very low were weight loss (about 15 lbs in a month), hair fell out, anxiety/depression, and very extreme exhaustion (I used to run 8-15 miles a day, but was worn out after a 10 minute walk after work).
Symptoms when TSH has been high have been weight gain, nails breaking off, uncontrollable binge eating, sleeping long hours but still feeling tired and staring off into space, bizarre mood swings (suicidal thoughts on a weekly basis and fantasizing about murdering family and friends from sadness and intense anger), no sex drive.
I haven't had antibody testing, and I have learned about the T3 relationship from reading. I've only seen my dr once since being diagnosed, and that was in November which just resulted in another lab test. I have high deductible health insurance because my husband and I are 25 yrs old and healthy (prior to this thyroid situation at least..). My lab tests are done at the dr I see and are fairly inexpensive, but the pituitary testing was sent away and was a couple hundred dollars. I suspect since he's not testing for antibodies or T3, those are labs that would need to be sent away so while I would like to have the correct testing, I'm not sure I can afford a couple hundred dollars every 6 weeks. Regardless, this is still a discussion I need to have next week w/ my dr.
Here are my free T4 readings (range is .58 to 1.7)
6/1 - not tested for T4
7/1 - 0.66
8/15 - 1.14
9/30 - 0.93
11/15 - 0.66 back to where I started but feeling worse than ever =(
I really really appreciate the time you all have taken (on this post and a couple others) to just listen and explain to me. While my doctor takes the time to listen to my concerns, he doesn't really explain much to me. After my wellness exam in June I received a phone call saying my thyroid was "high" and I needed a followup test. The phone call after that was that I'm hypothyroid and need to start a prescription that was to be called in. Despite my mom's problems, I've never really known much about thyroid disease. I've had to figure all this out by requesting my lab reports and then using the internet.
You all have been so nice and made me feel much less alone.
No, I haven't had an ultrasound and I take my birth control and antidepressant within an hour of synthroid - but I have been doing that since I first started taking it. I will try switching to evening and see if my mood starts to lighten but wait until my next lab so I don't mess anything up.
Also, that is a great tip to write the dosage on the lab report. Thanks.
Your FT4 on 8/15 was just exactly at midpoint of range. As artefemme pointed out, many of us have to be midrange on FT4 and upper half of range on FT3 before we feel well. All your other FT4 readings are way too low. When exactly were you hyper? How did you feel at your 9/30 labs?
I have very high deductible health insurance as well. FT3 is not an expensive test. After my insurance "discount", I pay about $50 altogether for TSH, FT3 and FT4. FT3 is not going to add a lot to the bill. If it does, you can order all three tests online for about $85. TPOab and TGab are not overly costly, either. You only have to have them run once. Once you have Hashi's, you have it for life...retesting adds no further information.
The lab range for TSH is 0.3-3.0 (according to AACE). However, that does not mean that you will feel well as long as your TSH is between 0.3 and 3.0. That's a range that 95% of the "normal" population falls into, but we each have a personal range as well. Perhaps your personal range is 0.5-1.0 (for example), and you will feel very hypo at 2.0. Once again, FT4 is much more important.
Goolarra, it's interesting that when her FT4 was in the mid-range, her TSH was 1.5, which she said made her feel hyper. V. strange.
I too felt those suicidal and paranoiac thoughts, to the point where I was hospitalized and my family thought I was crazy. And I was having non-stop panic attacks. It was terrifying. But no, it was my thyroid. Do you know that untreated hypothyroidism actually mimics dementia and psychosis ? Any good psychiatrist knows this. I did not have a good one. Anyway, as I said, it went away once I was on proper medication...not even the proper dose, but close... and yours will too. You're not alone in these feelings. Just know that it's a hormonal imbalance that can be repaired.
Are you taking bioidentical birth control ? Because Provera etc.can give you mood swings also and are not good for your body. They are synthesized from horse urine, which has extra molecules that are foreign to your body. Gave me radical mood swings which stopped when I went on bioidenticals synthesized from yams.
Oh, and it's important NOT to take your thyroid meds before your blood draw....it's more important with T3, but why take a chance of a false report ? And it's best if you haven't eaten and the labs are drawn at the same point in your menstrual cycle and preferably at the same time of day before you eat. If, because of the 5 - 6 week spacing you can't get them done at the same time of the month, then write on the lab report what point in your cycle you are in to see if there is a pattern. This is because of the estrogen binding effect. It may not disturb your meds at all, but it's good to have the record. The consistency of the labs is what will give you accurate comparisons, and most of us become more conversant with the meaning of the labs than our doctors.
Hang in there. You'll get better. All the best.
artfemme - My TSH was .15 - not 1.5 when I was feeling that way
I take Loestrin - not sure if that's bio-identical, but since I started it around the same time as being diagnosed with thyroid problems, I'm wondering if at least some thyroid symptoms are birth control side effects. Like I said, my doctor won't adjust any of my other medications until my thyroid is stable. That seemed very rational and methodical to me until I realized it could take a very long time to reach "stable"!
I also had no racing heart or shortness of breath that I've heard many report when they were over-replaced. Because I was so lethargic and weak, I actually thought I was still hypo during that time.
At 8/15 was was feeling depressed, anxious, and was underweight according to BMI. However, throughout this whole time it's the best I've felt. I wonder if the weight loss alone was creating a bit of the mood and tiredness problems. I was intentionally losing weight after having gained a few pounds earlier in the summer, however, it was an abnormal amount to for me to lose. When my synthroid dose was lowered, I gained the weight back much to my dismay.
So, here's my take on all this...I'm not a doctor, not a medical professional, just a fellow patient.
On 8/15, you felt the best you've felt. So, you have to ask why your doctor lowered your dose. Why? Because he looks at TSH and nothing else. Your TSH was low, so he lowered your dose, making you hypo once again. I see this as a classic case of a doctor who believes in the "Immaculate TSH" as one of our members is fond of calling it. Your FT4 on 8/15 was just getting to midpoint. We often find that once FT4 is midrange or above, it takes time for the body to heal and for symptoms to be relieved completely.
Your FT4 continued to fall on 9/30 (your TSH was almost identical...so much for that correlating), yet your doctor lowered your dose yet again. Now, your FT4 is on the floor of the range.
I suspect your doctor isn't a terribly good thyroid doctor (most aren't). He's not ordered the proper tests (may be partially due to your health insurance status). A lot can be compromised, but FT3 is not negotiable. He lowered your dose on 9/30 when your FT4 was still in the bottom third of the range. He reacts to TSH. Once on meds, TSH often becomes unreliable.
Don't give up on being treated properly. You just need a more enlightened doctor. One of our members, gimel, keeps a list of good thyroid doctors recommended by forum members. Perhaps he has someone in your area.
Your FT4 history is exactly what I'd expect given your meds dose changes. I don't think you have any kind of esoteric problem, just an inept doctor. We all have to find the FT4 level we,individually, feel best at. Then we have to find a doctor who won't whip the rug out from under us every time TSH goes out of range.
Don't just throw the pill bottle away and go for broke. If you don't feel well on 37.5 mcg, you're going to feel really bad on nothing.
Health in 2012!
Thank you SO much once again. My doctor has never even asked me if I've had symptoms or side effects when changing the dose. He is a primary care physician in his early 30s so while I feel extremely frustrated, I really can't blame him for doing what he thinks is correct. Gimel (or someone else) actually did give me the name of a doctor in my area, and also a doctor in the city I am moving to later in the year. I guess I keep waiting to be on a "stable" dose and then go to another doctor if I'm still having symptoms. You have also given me quite a lot of insight on my free T4 levels. I didn't know they were low since they are in the normal range.
Also, if my free T4 is actually on the low end, why would my pituitary gland basically stop telling my body to make thyroid hormone? Should I suspect a pituitary problem, or is that normal when taking thyroid hormone?
The FT4 range is way too broad. The original population that made up the "normal" group had symptomatic, but undiagnosed, hypos and asymptomatic Hashi's in it. Because of that, the whole lower half of the range is questionable. Seveal years ago, AACE adjusted the recommended TSH range from 0.5-5.0 to 0.3-3.0 to compensate. FT3 and FT4 ranges were never adjusted.
To tell you the truth, I and some other members have been struggling to come up with a theory as to why meds sometimes suppress TSH...without much luck. However, although I wouldn't call this "normal", it does happen frequently enough that we are very aware of it. One member's TSH hit just about zero almost immediately after starting meds. She's had to struggle ever since to stop her doctors from lowering her meds and making her hypo all over again. Many of our members have had nearly undetectable TSH for years...some while still experiencing severe hypo symptoms.
TSH is nothing but a messenger from your pituitary to your thyroid telling it to produce hormone. High or low levels of TSH cause no symptoms. It's only when TSH accurately reflects FT3 and FT4 levels that we have to be concerned with it.
No, I wouldn't fault your doctor for doing what he thinks is best...they're only human. They're just regurgitating what they learned in med school, and it sounds like yours doesn't have a lot of experience. You can try educating him...he's very young, so he may be amenable to your bringing material for him to read.
You've been given lots of good info from goolarra and artfemme. I just thought that you might get some further good info from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
I'm sorry that I mis-read your TSH. Goolarra has given you good advice and I agree with what she's said. I too don't understand why your doc would lower your dose...ESPECIALLY since your TSH and FREE T4 were "in range" and you were feeling better. If Gimel has a recommended doctor in your area, I would switch at this point. We've all wasted a lot of time dealing with doctors who only go by the TSH and it's just not worth it. You'll spend a LOT more time and feel WAY more frustrated dealing with a doctor like that than you ever will waiting the 5 -6 week intervals between blood tests until you get your levels right ! It IS possible to "train" your PCP...it's what I've had to do after failing to find a good endo...but it's time-consuming, takes a LOT of research and dedication on your part and a doctor who is willing to read the scientific papers from medical journals that you will have to give him to support you position. Very few doctors will just take your word for it or agree to do what you request, you have to have hard evidence to convince them. Sadly, research doctors state that medical doctors are practicing about 17 years behind the current research. It's appalling but that's what they are taught in medical school by professors who got their own education in the dark ages, and then very few doctors find the time to read medical journals any more, which is what they used to do to keep their practice current. If Gimel had a recommendation for me, I would take it. Sadly he does not :- (
I did a little googling around about Loestrin. It's good in that it uses estradiol as the estrogen part, that's the best one, and that it is a "low dose", but it is the highest androgenic birth control pill listed of ALL of them. I read a lot of complaints about hair loss, lack of libido and orgasmic ability, and suicidal depression. You might do a little googling on your own. I'm no doctor and past the need for birth control, but if I were you, I would consider another form of birth control, at least until you get your thyroid balanced. Have you thought of using an IUD, for instance, so that you would only be dealing with one type of hormones...the thyroid ? I don't mean to be presumptuous, I don't know if there's another reason you are taking the pill other than contraception. But I DO know from my own experience with HRT that estrogen has a binding effect on T4 and just throws another component into the mix.
I wouldn't worry too much about TSH. Because yours was elevated before you were medicated, your hypothyroidism seems pretty straight forward. And as Goolarra says, so many of us feel best when our TSH is lower than the norm that we don't worry about it. I suppose the research will catch up sooner or later :- ) My TSH was .89 for years before I had any thyroid symptoms. I watched it go up to 1.24 as I gained 40 pounds, hair fell out, major depression, brain fog, rising cholesterol...all the classic symptoms. But because it was at the low end of "normal", I couldn't get any endo to take my symptoms seriously until finally they discovered I had benign nodules. I was only put on meds to "slow the growth", and then only Synthroid, which in my case did nothing to alleviate symptoms. I had to force them to put me on T3 too. Imagine their shock when all my "unrelated" symptoms went away ! My TSH is now below .01 and I don't even test it any more. And my doctor finally agrees I'm on the right track because she's seen all my OTHER labs and blood pressure go back to the extremely good levels they had before I had thyroid symptoms. So don't make yourself agitated worrying about your TSH. Just get the FREE T4 and FREE T3 labs done and start getting on the right medication. It's a slog, but you'll get there. And it will probably be less expensive to get the proper testing than to pay repeated co-pays to a doctor who doesn't know what he's doing.
Happy New Year everybody ! Here's to good health in the New Year. Many blessings.
Oh, and P.S.
I also lost 15 lbs. in 3 weeks when first put on the right combination of meds. And I then gained it right back in 3 weeks when the stupid new endo lowered my meds because of my TSH. A lot of that weight is fluid that accumulates when your thyroid isn't functioning properly.
I lost about 25 lbs a couple of months after starting on thyroid meds...without trying. I agree that a lot of that was water...I think about 5 lbs of that drained out of each ankle...they were so swollen when I was hypo.
I agree, artfemme, it's less expensive to find a good doctor and get adequate testing than to mess with one who has you swinging back and forth between hypo and hyper. Thyroid labs are pretty cheap compared to other diagnostics. Now that my endo knows I know what I'm doing, I only see him once a year. I have labs after six months, and if either of us has the urge, we call each other.
Keep at it, rach...it's all attainable...
artfemme- I am SO sorry for what you had to go through! I feel bad for having such a high level of frustration over this when I read online about some other people's experiences. I believe you are right about just finding a doctor who will treat correctly from the beginning. My current doctor's nurse practicitioner is the one who a year ago told me I had nothing to worry about when my hand was swollen up from repeated Raynaud's attacks. I worried it may be a sign of thyroid disease since my mother had Raynaud's issues prior to thyroid diagnosis. I am trying to let go of the frustration and just move forward now, but I just wish I could adequately express to these doctors the effect this has all had on me. It makes me so sad to read about other people who have been lectured, embarrassed, ignored, dismissed by doctors. When a doctor says you're healthy, but you feel awful, it really makes you feel like a crazy person.
I am only taking birth control for contraception. I had switched from Ortho-Tri-Cyclen Lo which was fine except that my periods were TWO weeks long even after being on that pill for 12 months. I have talked with my husband about coming off birth control pills totally for a while and see if that helps with my mood. It's so difficult to tell where symptoms/side effects are coming from, so for now, I do agree with my doctor that only one thing should be changed at a time - thyroid first. However, I have thought about IUD or changing pills. I have to stay on some sort of contraception because I am simply unfit/uninterested to mother a child in my current state =P
I noticed the dr. seemed a bit hesitant/confused when he called me with my latest lab report showing my TSH went up over 6 points in a month just by lowering from 50 mcg to 25 mcg. It has to be obvious even to him at this point, that my TSH is just not going to be easily controlled with or without Synthroid. Looking at a chart I put together with my labs, doses, and symptoms, it's just clear as day that my medication has been too low this entire time.
My fear is he will not be convinced that my T4 is still too low since the lab report says it's normal. During my appt. and phone calls, he only ever discusses TSH, and I think only runs the T4 test because it's automatically done at his lab - he doesn't seem to use it at all.
I will be infuriated if he recommends counseling (AGAIN) or more psychiatric medication to deal with my symptoms. I don't mean to threaten anyone, but I am quite emotionally/mentally unstable and have no idea how I will react when upset!! LOL I haven't been forthcoming about the severity of the mood swings and confusion I've had with him because I'm terrified he will just conclude I'm bipolar and leave it at that. He is always asking me if I have a history of abuse or if my marriage is on the rocks. I appreciate his genuine concern, but it's hard not to feel slightly offended since he's essentially suggesting all my complaints are some sort of mental/ emotional defect.
My husband has been extremely supportive even though I know it's been a big stress on him as well. He is going to come to the next appointment with me and hopefully the dr. will take him more seriously.
Thank you thank you thank you all SO much. I have been reading over the past few months on the internet getting info about all of this, but I was clueless that I was being under-replaced except for on my most recent lab report. It all makes so much sense now, and for the first time, I know I can have a goal-oriented discussion with my doctor and know when it's time to just cut my losses go elsewhere for help.