How long does it take to get stabilized after diagnosis?

[rach7612]

I was diagnosed in July and have had blood tests and medication adjustments every six weeks. After 6 months, I would have expected to arrive at the correct dosage by now - especially with all these "highly sensitive" lab tests. I've gone from very under-active, to over-active, and now back to under-active. I suspect my next lab will require yet another adjustment since I've been abnormally depressed and sleepy the last few weeks.

How long did it take you after diagnosis to reach the correct dosage? (Not necessarily with all your symptoms resolved, but where you no longer had to keep getting blood work every 4-6 weeks) I understand it will always need to be adjusted somewhat every year or two, but I read "The Thyroid Solution" and the Dr. who wrote it referred to patients who were euthyroid 1-2 months into treatment! Is this normal??

My doctor won't adjust any of my other medications - antidepressant and birth control until my thyroid is stable because he says what I perceive as "side effects" may be thyroid related. 6 weeks may not seem very long to a healthy person, but it's an excruciatingly LONG time to be constantly exhausted, depressed and struggling to hold down my job and marriage!

[rach7612]

THANK YOU!! I have a feeling he will be interested if I have a study to show him.

[gimel]

Here's an argument that you can give your doctor that might make an impact.  If you have hypo symptoms (which you do), then you need adequate Free T3 to relieve those symptoms.  I say this because this scientific study (and others) concluded that FT3 correlated best with hypo symptoms, while FT4 and TSH did not correlate at all.  

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

In addition, you can also give him a copy of this link.

http://www.thyroidscience.com/hypotheses/warmingham.2010/warmingham.7.18.10.pdf

This link is just one of many that reveal the futility of trying to use TSH to medicate a patient.  Note in the link, the following conclusion.

" Hypothyroid patients whose thyroid hormone
replacement dose is being regulated against the
TSH reading alone are being maintained in an
under-treated state and are correct to assert
that they feel better on a higher dose.
Therefore, hypothyroid patients should not have
their thyroid hormone dosages set by reference
to their TSH readings."


And don't forget to give the doctor a copy of the letter written by a good thyroid doctor, which I referenced in my prior post.  If all this information doesn't sway your doctor, nothing will.

[rach7612]

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.

[goolarra]

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]

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.

[artfemme]

Dear rach,
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.