[Bobbi]

#1064572

Hi, Laurie:

It takes a doctor/scientist to interpret labs. You need to see if yours can take the time to discuss things with you — and it might help to take another family member, or friend, along with you. Sometimes we patients don’t remember everything that’s said, and another set of ears can be very helpful.

Some people have the antibodies for both Hashimoto’s Thyroiditis (hypothyroidism) and Graves (hyperthyroidism). While we cannot be both hyper and hypo at the same time, the mix of antibodies can put those people into hormone roller coaster Hell. There might be other medical conditions in which there is fluctuation too, if that is what is going on.

And, another point. My endo made a point of warning me, long ago, against getting blood tests too frequently. Her point was that if a blood test was done too close to a dose change of our meds, the results could produce the wrong interpretation of what was going on. Then, if you change the medication dose again, you could "overdo" things. This endo allows her patients to come in when they feel they need it, to have blood tests done. And the one time I didn’t take her advice, it looked like I was still hypothyryoid (I was on replacement hormone), and the replacement dose was raised. It became apparent very quickly that that higher dose was way, way too high. I mention this to you to tuck away in your thoughts. If you seem to be on a hormonal roller coaster, up and down, up and down, look at how frequently you are having labs done. It might be too quickly.

[snelsen]

#1064573

Hi Lauri, just to second Bobbi’s comments. It is the hardest thing I have ever done, since I want ACTION, ANSWERS, and to feel better NOW, but Graves’s just isn’t like that. I think you might consider Bobbi’s comments strongly, and I concur with lab frequency. My endo says that he does not have valid information enough to make decisions unless the labs are, at a minimum, six weeks apart, and he prefers ten weeks or longer. The same goes for how I am feeling and what is going on with me. Two, three weeks is just too soon, for the reasons Bobbi said. Worth thinking about.
Shirley

[Kimberly]

#1064574

Hi Lauri – As Bobbi said, we can’t interpret labs here…a discussion with your doctor is definitely in order. However, here is some additional "food for thought".

Remember that Free T4 and Free T3 represent the actual levels of thyroid hormone in the body. TSH is a substance that tells the body whether it should be making MORE or LESS thyroid hormone. During the initial stages of Graves’, FT3 and FT4 are better benchmarks for determining dosing than TSH, as TSH can remain supressed for some time.

In some patients on ATDs, the FT3 and FT4 can fall pretty quickly. I went from hypER to the bottom end of the normal range in just a matter of weeks. When this happens, it’s important to pull the dosage back to keep our FT3 and FT4 from free falling into hypO territory. So while you and your doc are trying to find your "sweet spot" with your dosage of ATDs, the more frequent testing should be OK. If you ever find yourself on replacement hormone, spacing the tests out farther apart is definitely recommended. And I would absolutely request new labs if you start to feel hypO symptoms coming on, such as fatigue, joint pain, constipation, cold intolerance, heavier periods, slow pulse, or weight gain.

I can’t recall if you have mentioned this, but are you able to get labs done in advance of your appointment with the doctor? This will help facilitate a better discussion. I have questioned my doc on dosing before, for example: "my FT4 is x, and yet you are changing my dose to z. Why?" Sometimes I get an explanation, and other times she has actually changed her mind. ” title=”Very Happy” />

[Lauri]

#1018408

Just when you think you understand it….

New bloodwork from Friday… :” title=”Question” />

Normal Ranges: FT4 (0.65,1.4) TSH (0.4,4.0) T3 (5.2,170)

04/24/2008: FT4 – 1.37 (TOP); TSH – 3.59 (TOP); T3 – 109 (Mid-Upr)
12/22/2008: FT4 – 1.53 (H) ; TSH – 2.4

05/03/2010: FT4 – 1.91 (H) ; TSH – 0.001 (L) ? Hyper ?
05/28/2010: FT4 – 1.42 (TOP); TSH – 0.012 (L); T3 – 157 {started Atenolol 25mg}
06/11/2010: FT4 – 1.22; TSH – 0.014 (L); T3 – 128 {Started MMI 20mg}
07/06/2010: FT4 – 0.84 (BTM); TSH – 0.452 (BTM); T3 – 89.5 {reduced MMI to 10mg}
07/16/2010: FT4 – 0.80; TSH – 4.07(H); T3 – 90 {reduced MMI to 5mg}
07/30/2010: FT4 – 0.83; TSH – 6.51 {no change}

Can anyone understand or explain…I’m having brain block today…it just makes no sense ot me at all. ” title=”Sad” />

why is the TSH going off the chart? If ft4 and t3 are pretty much normal? From everything I have read most Graves’ patients TSH levels stay on the low range…Is it possible I am really HypO with episodes of HypER? Even back in 2008,
things looked strange, why didn’t they do anything then? all they seemed concerned about was the size of the nodules, and whether or not they were hot/cold?

[Lauri]

#1064575

Kim…I don’t actually have a dr apt until September…all the lab work is due to feeling crappy, and talking with them on the phone when the TSH went way up the first time…then they reduced the MMI to 5mg…they have reduced every 4 weeks or so, since the TSH levels started coming back up, and as you guys have said before, it looked like I was rebonding into hypO. I feel pretty good, other than some insomnia and waking up early on some days…see the Rheumatologist for the joint aches and pains Thurs. I guess if I feel pretty good, I shouldn’t worry…too much anyway. Thanks everyone. I hope I don’t have to get pricked again until September now.

[Ewenme]

#1064576

I was scheduled to see my endo in Sept, but had called their office because I have been putting on weight–more than I thought I should, and was given an earlier appt. My endo acted a little surprised to see me again that soon. I had the usual blood draw, and will get the results in two weeks. I asked if next time I could have the blood drawn BEFORE my appt.(scheduled for Nov), so we could discuss it with him, and he agreed and gave me the appropriate paper work. I don’t understand why they don’t routinely do it that way–makes more sense to me. Normally they tell you they will call you only if there’s a change in dosage based on your lab results (I always have them mailed to me, as well). So if they feel a change in dosage (I’m on Methimazole) is not needed, you will not hear from them until your next appointment. Seems a bit illogical to me, but I’m just the patient ” title=”Wink” /> Ideally, they would call you either way and let you know how you’re doing, wouldn’t you think?

[Kimberly]

#1064577

@ Lauri – Definitely keep an eye out for the hypO symptoms that I mentioned above and don’t be afraid to request new labs if needed before your appointment. Time will tell whether the 5 mg/day is your "sweet spot" — or if further reductions will be needed to keep you out of hypO land.

@ ewenme – You raise a good point about communication with the doctor. I have found from personal experience that no news is NOT necessarily good news. Doctors’ offices are super busy, and occasionally follow-up items can slip through the cracks. If you haven’t heard from your doc’s office within a reasonable period after testing, it’s best to give them a call to double check.

[Lauri]

#1064578

Kim…..received an email from the Dr today to STOP the MMI…I went into depression crisis on Thursday, and hubby wanted to commit me. I aactually stopped the MMI that night. this has been one horrible ride since diagnosis. i am so terribly confused, everything is happening so fast! Have you heard of this happening before?

I am wondering…the Dr said it was Graves from bloodwork….I remember reading somewhere, you can have both Graves and Hashi? i am not understanding any of this…I am reading info on Graves’ and Hashi’s now……

[Kimberly]

#1064579

Hi Lauri – Sorry to hear you are having so many complications. ” title=”Sad” /> Depression is often associated with hypO, so it’s possible that’s what was going on, especially since your doctor told you to stop the MMI. Are you getting hard copies of your lab results? If not, I would definitely request copies, as it helps to keep tabs on how you *feel* and compare that to your lab results. The "normal" range for thyroid hormone is fairly wide, so this can help you to determine what level is *optimal* for YOU.

Yes, it’s possible to have both Graves’ and Hashi’s. Diagnosis is a little tricky, though, as the antibodies that are used to test for Hashi’s are found in about half of Graves’ patients, most of whom do *not* have Hashi’s. Treatment is also more complicated, as patients may go through swings of hypO vs. hypER.

It’s also possible to *just* have Hashi’s, but to go through a temporary period of hypERthyroidism. This happens because the destruction of the thyroid gland ends up dumping stored thyroid hormone into the body.

Finally, Graves’ patients who are on too high of a dose of Anti-Thyroid drugs can end up hypO. Finding the "sweet spot" with your dosing is a trial-and-error process, so some patients may start on a dose that will quickly send them hypO. Also, it is VERY important that dosing decisions are made based on Free T4 and Free T3, and *not* on TSH. In Graves’ patients, TSH can literally remain supressed for months. So sometimes doctors will just look at our TSH…see that it’s too low…assume that we are hypER…and prescribe *more* Anti-Thyroid Drugs. This is definitely not a cycle that you want to get into!

I would definitely try to get in to see your doc in person to get his/her thoughts on what is going on in your case…and what your next steps are for treatment.

Best of luck — I hope you can get some relief soon!

[Lauri]

#1064580

Finally I have an answer to the TSI question…I emailed the doc and he replied the TSI was >600%. FINALLY!!! I don’t have a copy of the labs yet, and will assume he is mailing them to me. ” title=”Razz” />

On a side note…I started Lexapro for the depression, and will see the GP again in 3 weeks, and the Endo again in 4 weeks. going to ask for bloodwork to be done prior so as I have numbers to work with when I see him…

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