[jamcam66]

#1059069

This is insane to me!!!!

Diagnosed w/ “Mild” Graves Feb. this year. I have been on Methamizole for almost 3 months. (Only ONE 5 mg pill taken twice per week). A VERY conservative dose from what I have read & heard.

I have had a couple of labs since & both labs since starting the meds, my TSH levels have risen considerably!

Dec. 2011 TSH: 0.025 Gen. Dr.
Jan. 2011 TSH: 0.012 Gen. Dr.: (Referred to Endo)
Feb. 2012 TSH: 0.013 Edno (Diagnosis of Graves)
Last Wed. 5/09/12 Endo: TSH: 2.19
This Wed. 5/16/12 Endo: TSG: 3.910 (OMG)!!! Isn’t this is HYPO??!!!

Why in the world would my Endo’s office call me to INCREASE my meds??!! Now he wants me to take one 5 mg pill EVERY DAY ????!!! Why????? If my TSH is now high!!?? I have ZERO energy, ALL my muscles ache, periods are now 2 weeks apart & I’ve gained 8 lbs!!! (OMG)!! I’m only 5 ft tall.

I thought they would tell me to stop the meds since my TSH is soooo high, but I am doing what they said & I’ve started taking meds as suggested. The numbers just don’t add up to what they are recommending in my opinion. I do have a follow-up appointment w/my Endo this coming Wed. & I will express my concerns.

Help!

[adenure]

#1171922

The disclaimer: I’m not a doctor, but…

Crikies! Yes, that does sound odd! I too was on methimazole (5 mg. daily for 7 weeks before my liver started getting damaged- so I had to stop). But, just in 7 weeks, my thyroid righted itself pretty quickly. I think methimazole is pretty powerful stuff.

Yes, do express your concerns! I honestly can’t figure out why they’d have you up your dose.

Did you have a baby recently? Postpartum thyroiditis usually manifests itself as hyper for the first 6 months and then hypo for the next 6 months. Just thought I’d throw that out there.

Good luck at your appointment and do ask what his reasoning is behind the new dosage.

Alexis

[jamcam66]

#1171923

Thanks so much for your input Alexis!

No, I have never had any children. So therefore, it could not be Postpartum Thyroiditis.

I’m still very concerned as to why they told me to increase my meds when the labs indicate High TSH. Anyone else experience this? Is it normal to increase the meds when TSH is now high? Thoughts anyone?

I will be seeing my Endo on Wed. & I will of course have many questions for him.

Thanks Everyone!
Jennifer

[snelsen]

#1171924

A few thoughts. I’m not a doctor, either. I find your experience a bit of a puzzle, too. One comment. Each lab has a different “range” of normal. So numbers mean less when the range is not listed along with the result. For example, the TSH rang for the lab where my blood goes, is (.4-4) I am not sure your TSH is very high at all. It might be the high range of normal range for your lab, or slightly above it. So from now on, if you post any labs, state the range of your lab along with the results. *I suggest you do what is necessary to get copies of all your labs and all the notes from the visits to your doctors.
Here are a few thoughts (and questions) that tumble up in my mind regarding your post. They really are all over the map, too (thoughts.) Chances are, by the end of the day, you will receive a very good post by Bobbi or Kimberly about labs. I think Bobbi wrote a recent one, explaining them. You might try typing T3, T4 in the search engine.
1. Down the road, later on, when you are well again, usually, when taking Synthroid, much later on in your treatment, labs are drawn, a T3 and T4 are drawn with the TSH. These labs tell different stories, all of them vital to have you end up with the right amount of med for you. And at that time, the labs should be drawn 2-3 MONTHS apart, to accurately reflect correct information of how you are metabolizing the hormone. But right now, you began with HYPER, and it is then that labs are drawn pretty frequently, as yours have been. That is what I would expect.

But right now, you have a new diagnosis of Graves’, and your docs tell you that your TSH is low, which fits with this. So goal is to decreased amount of hormone racing around your body. I have no idea what “mild” Graves’ might mean. Not sure what your symptoms were in Feb. Were they the usual cookbook list of hyper symptoms? Tremor, weight loss, anxiety, hunger, fast hear rate, on and on It does seem that he started you on a very low dose of methimazole, to see how you felt, and what you subsequent labs would be. It seems it is a very conservative low dose. Maybe he want to be sure he did not plunge you into a very hyPO state. BUT as you said, you do have some hyPO symptoms right now. Alexis had great suggestions, I’d follow through with a list of questions

I do feel that my post is not that helpful to you,for you seem to have quite a good understanding about the dx, why you are taking the med, what it should be doing, etc. And, I am as perplexed as you are with the increase of the dose (if the endo knew your symptoms!!!) Did he?

I am so glad you have an appointment next Wednesday. Glad it is as soon as it is, but right now, the way you feel, I am sure it feels very far away! In summary, your reasonings and you questions sure make sense to me, and I am sorry you feel terrible and hypo. Being hypo is its’ own little hell, just like hyper, but different. It is depressing to feel so tired and have those other symptoms.

I guess the only other thought I would have that needs to be considered, is if there is anything else going on that is not Graves’. But it is hard to think of that as a viable option right now given the information that you have.
Know that in a period of time, you will be yourself again. But, like all of us, you want it to happen yesterday!
Shirley
Shirley

[Kimberly]

#1171925

Hello – We’re not docs here, but I would suggest contacting your doctor’s office ASAP about this recommendation, rather than waiting until Wednesday. There is actually some controversy over whether the upper end of the normal range for TSH should be around 2.5-3 or closer to 4-4.5. However, as TSH is increasing, the more common course of action is to *decrease* the dose of anti-thyroid drugs, not *increase* them. (This is the opposite of how things work with patients on thyroid hormone replacement after RAI or surgery — for these patients, increasing TSH generally indicates a need for increased dose of Synthroid, levoxyl, etc.)

Also, hopefully, your doc is also looking at Free T4 and T3 in order to make dosing decisions and not just TSH, as the latest guidance from the American Association of Clinical Endocrinologists and American Thyroid Association notes that TSH is not a good benchmark for making dosing decisions early in the process. You can view this guidance document by accessing the “Treatment Options” thread in the announcements section of this page.

Take care!

[snelsen]

#1171926

Hi Jennifer, as the day passed, I began to think you should try to call on Monday, to express your concern about this. Knowing how crazy endo’s office can be, and the number of people to go through to get an answer, I am not sure if it will make a lot of difference, but it is worth a try. As Kimberly said, trying to call is a good idea. I agree with your concern over this matter.
I am unaware of the controversy about the upper limit of the TSH range. Kimberly, are you referring to something different than the fact that different labs use different calibrations on their instruments, and the ranges may differ for that reason?
Jennifer, it is definitely the right thing to do to have the the complete thyroid panel of TSH, T3 and T4.
Shirley

[Bobbi]

#1171927

I would point out that you wrote “TSG 3.910”. We all took that to mean TSH, not TSG — including you, jamcam66, I think. I tried to do a bit of research to see if there was any medical test that could be so labeled and couldn’t come up with anything appropriate, so it is likely that that was just a typo and the report was for TSH (and the TSG was your typo). However, keep the possibility in mind, when you talk with your endo, that the test result really was for something labeled TSG. And if that is the case, would you please write back and let us all know what it is?

[beach45]

#1171928

It sounds like that an increase to 5 mg a day may be too much yet you will have to discuss with your doctor. I learned when I went very drug induced hypothyroid on Methimazole (MMI) over a year ago, that I speak up to my doctors when symptoms are worse. I had the exact same symptoms that you had when hypo. Yet Free T3 and Free T4 have to be used as indicators also because TSH can lag behind them and I know this for a fact seeing it for myself. I was very drug induced hypothyroid a year ago on MMI as per my Free T4 not my TSH; the TSH was 1.1. About 2 weeks later my TSH was taken because of a minor surgical procedure and my TSH was 13. It took a while to drop with a dosage decrease. I also had a TSH once of 3.3 and I had the symptoms you describe except not as bad as when my TSH as 13. I ask my endocrinologist now that I had RAI where he intends to keep my TSH and he said between 2-3. For Graves patients, I cannot say yet TSH 3.9 is high for some and some of the doctors are using older lab values of approximately 0.5-5. Which anything from TSH 3-5 can be considered subclinical hypothyroid yet there is controversy still over this and it depends on who you talk to. I also have another doctor (not an endocrinologist though) tell me anything over TSH 3 is hypothyroid. There are a lot of opinions out there yet hopefully your doctor will go by your symptoms too and not just lab values; mine does not though. Yet being that he is a professor too at a Medical University by me he knows what the latest TSH lab values should be as per the AACE. Like Kimberly said there is document posted. What I do, is I bring good, solid medical journals and information from such places as AACE and the ATA to back myself up when I discuss my health care with my doctors in case we get into a “discussion.” We have to be our own health care advocates and it is imporant that a patient has a good rapport with their endocrinologist or whatever doctor treating their Graves disease because that patient will be with this doctor for a long while. Plus I agree with Bobbi, make sure they did mean TSH and not TSG. Best of luck!

[jamcam66]

#1171929

Thanks for all your responses!

I did make a “Typo” error: It should be TSH, NOT TSG. Thanks for pointing that out to me & for your concern & advise! Also, my TSH number of 3.910 is marked High by the lab. FYI: The “Normal” reference range on the lab report says that Normal is: 0.358-3.740. So it looks like I am now Hypo in my opinion & therefore I still wonder why he increased my meds.

I am going to call my Endo’s office tomorrow & NOT wait until my appointment on Wednesday & I will ask that the Dr. call me personally to explain why my dosage was increased when on my labs clearly indicate my increase towards being hypo.

I also want to ask everyone out there (& I will also ask the Dr.’s opinion) on stopping the meds completely & taking a “Watch & Wait” approach. I read online that some Dr.’s are now taking this approach with non-severe cases. I only wish I would have read this before & asked the Endo before I started taking the Methamizole. The Endo had veven told me that I have “Mild” Graves Disease (whaterver that means).

Has anyone out there ever gone to a “Watch & Wait” phase. There are only two board certified Endo’s within a 150 mile radius in my area & I don’t want to offend my Endo by questioning him too much. I wonder if my Dr. will get mad @ me & think I’m a nutcase.

Peace, Love, Health & Happiness to ALL!
Jennifer

[Bobbi]

#1171930

Hi, Jennifer: I don’t know about the watch and wait issue. The information that I have read, from doctors writing articles in the old ATF newsletter, for example, was that they were finding that even “subclinical” levels of hyper had been shown to have adverse long-term health implications. For example, while we are hyper we lose bone. For some reason, the bone-munching cells in bone work harder and faster while we are hyper than the bone-building cells in bone. So, we are at risk for early osteoporosis, the longer we are hyper. Muscle wastage is also an issue.

I think it may be more difficult to modulate the meds if the level of hyper is minimal, but letting it go on may not be wise, either.

[Kimberly]

#1171931

snelsen wrote:

I am unaware of the controversy about the upper limit of the TSH range. Kimberly, are you referring to something different than the fact that different labs use different calibrations on their instruments, and the ranges may differ for that reason?

Hi Shirley – Here’s an article that talks a bit about the TSH controversy. The concern is that there are so many patients out there with undiagnosed thyroid issues that it could potentially be skewing the “normal” range.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.familypracticenews.com/news/more-top-news/single-view/narrower-normal-urged-for-treated-hypothyroid-patients/3ef2ced71fb36fa66ca2f7b51accf935.html

The American Association of Clinical Endocrinologists has recommended that the upper end of the “normal” range be reduced (recognizing that all labs use a slightly different range). However, not all labs have adopted this change.

[Kimberly]

#1171932

jamcam66 wrote:

I also want to ask everyone out there (& I will also ask the Dr.’s opinion) on stopping the meds completely & taking a “Watch & Wait” approach. I read online that some Dr.’s are now taking this approach with non-severe cases.

Hi Jennifer – I have never heard of this for a patient who has been definitively been diagnosed with Graves’ and has T4/T3 levels outside the “normal” range.

I have heard of this approach for “subclinical hyperthyroidism” — where TSH is suppressed and T3/T4 are normal — if the patient is *not* experiencing symptoms and is *not* considered at high risk for heart complications.

“Watch and wait” is more commonly used (with the possible addition of a beta blocker) for patients who have hyperthyroidism due to thyroiditis, which tends to resolve on its own (or even turn into hypo) over time.

[jamcam66]

#1171933

Kimberly:

Thanks so much for your thoughts. Your last reply post is EXACTLY why I am questioning EVERYTHING! (Including my Graves Diagnosis)! Perhaps I don’t have Graves @ all & I was/am “subclinical”. My symptons for seeing my General Dr. in Dec. 2011 was pain in the thyroid area, anxiety & slighly elevated heart rate (80-95 BPM). The pain in my thyorid area left fairly quickly (before any meds), so I’m not sure now it is/was even related. I wonder now looking back if the severe stress I was going thru @ the time was the main factor for my anxiety & slightly elevated heart rate.

My original labs (before my Graves diagnosis) from Dec., Jan., & Feb. all show my TSH being low. However, in those beginning labs my T3 & T4 were all in normal ranges. I asked about this & my Endo still insisted that I am “Mild” Graves Disease. He told me about all three treatments & I chose the Meds.

Now I can’t explain as to why he has not done the T3 & T4 testing on these recent last two labs, but I am feeling very nervous about my numbers now edging towards Hypo & the strange & sudden increase of meds when the TSH clearly has come WAY up.

I called my Endo’s office this morning & asked that the Dr. please call me to discuss my concerns about the labs & meds increase. The receptionist told me that she did not want to argue my lab numbers as she is not the Dr. Then she said that the Dr. probably won’t call me since I have an appointment on Wednesday. (Seriously……What??!!)

I’m sure that I will have an interesting visit with the Endo on Wednesday. I just am afraid now he & his office thinks I am a nutcase in asking all of the questions.

Frustated to say the least!
Jennifer

[adenure]

#1171934

Jennifer,

Let them think you’re a nutcase (You’re not, obviously!)- this is your health and your daily living, and it matters! Fortunately, Wednesday isn’t too far away. I hope you get some answers. Don’t leave that office without them!

Alexis

[jamcam66]

#1171935

Yes…It was a MISTAKE!!!

The labs told the story & I should have listened to my body & myself!

The “Office Girl” told me to increase the meds. My Endo said to STOP the meds!

Saw my Endo today & that is what he told me. It was a MISTAKE!!

I should have stopped the meds NOT increased them!

I am sooooo angry! Well the Good News is that he told me to stop meds & I am probable in remission! Yeah!!!!

See him in 3 months for another lab.

If I come back with “Needing mor meds”: I will get a second opinion this time!

Check back with you all in 3 months!! I’m outta here!
Jennifer

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