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    Old 01-30-2012, 12:14 AM   #1
    ABQpam
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    Question Graves "Burn Out" - HypoT - Elevated TSI ...

    Hello! Latest update on my Elevated TSI test ...

    Had appointment with my doctor last Friday to discuss TSI and dose increase. I have been on 37.5mcg for about 4 weeks with no significant improvement in symptoms. She readily increased me to 50mcg Levo without doing more labs. YAY! Will now wait 6 weeks to do labs with the new dose.

    Her thoughts on my TSI level of 105 (Range: > 110).

    Although she understands Hashitoxicosis and agreed that Hypo labs with elevated TSI is indicative for that Dx - I am clinically negative for TPO & TG Ab's. Two Endos that reviewed my ultrasounds did say "it might be Hashi's". My pcp is thinking I've had undetected Graves for years that has caused my thyroid to "burn out". The TSI Ab's interrupt the HPT loop causing falsely lowered TSH therefore keeping my FT3 & FT4 static in the lower normal range. Resulting in the goiter and hypoT.

    She doesn't readily agree with the lab stating 1% difference means you do or don't have Graves disease. She thinks I would be a great " Clinical Case Study ". LOL She was actually serious.

    We also talked about surges of TSI Ab's being responsible for my fleeting "adrenaline episodes". She gave me lab slip to have the TSI Assay done within 12 hours of my next episode - antibodes would still be circulating in my blood. (Wouldn't that be a blessing - to know its the Thyroid Stimulating Ab's - not my heart!). These episodes are unsettling to say the least.

    I've been on increasing doses of a beta blocker for years due to symptoms previous PCP thought were heart related; palpitations, borderline HBP, "anxiety" etc. (now I'm beginning to wonder...) I was even put on HRT +\- 13 years ago due to excessive sweating and feeling flushed. (menopause at 35? Really?). Had a 45 lb. rapid weight loss 10 years ago that I just chalked up to stress. I can look back at my health issues over the last 10-12 years and it really could fit her theory. Hmm....

    OK .... what do you think of my doctor's hypothesis? Has anyone else been told their thyroid "burned out" due to undetected / untreated Graves? Can GD go into remission without ATD treatment? Can Graves Disease wax and wane?

    I'm seriously confused at this point. I would love some feed back on this intriguing new twist to what I thought was simply hypothyroidism.

    Thanks,

    Pam

    Last edited by ABQpam; 01-30-2012 at 12:16 AM.

     
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    Old 01-30-2012, 01:21 PM   #2
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Your doctor has some interesting thoughts...and I'm thrilled she can "think outside the box"!

    I remember that you haven't tested positive for the antibodies most commonly seen in Hashi's. Truly, the only definitive test for Hashi's is biopsy.

    I think you know I started my thyroid disease journey with Graves' and took anti-thyroid drugs. I went into remission and then joined the 20% of Graves' patients that go hypo after remission. So, it's easy for me to follow your doctor's line of thinking.

    Yes, it's possible for Graves' to wax and wane (becoming active and then going into remission).....and, yes, people can go into remission from Graves' without taking anti-thyroid drugs (although, the hyperthyroidism must've been very mild - otherwise, untreated hyperthyroidism can lead to life-threatening thyroid storm).

    Now, people who have Graves' usually start their thyroid disease journey with hyperthyroidism, thanks to those TSI antibodies which stimulate the thyroid to produce hormone and suppress TSH.

    Then, as they move forward, they can also produce another type of Graves' antibodies called TBII. These are blocking antibodies that can actually negate the effects of TSI and make the patient euthyroid (normal thyroid function) but, with suppressed TSH.

    Or, those powerful blocking antibodies can over-ride the effects of TSI and make the patient hypo (with suppressed TSH). This is where I'm at now.

    So, your doctor is correct that your TSI interrupts the HPT feedback loop and lowers TSH (yours is not suppressed) but, it does *not* keep your FT4/FT3 in the lower range - TSI would cause elevated FT4/FT3 (unless something else is coming into play)

    Quite honestly, your TSH is a little on the high side for someone that has measurable TSI (or TBII) without Hashi's. For example, on a "good" day, my TSH is .011

    Please know that I do not have any "adrenaline episodes".

    I think the "adrenaline episodes" would be key to your diagnosis. If you continue to have them, then I would say you have Hashitoxicosis.

    If you no longer have them, then it's entirely possible you're in a hypothyroid phase of Graves'.

    For whatever it's worth, TSI antibodies stay in the bloodstream for 2-3 months so, I'm not sure what checking your level during an "adrenaline episode" would truly accomplish.

    You could ask to get a TBII (thyroid binding inhibitory immunoglobulins) test to see if that is the cause of your hypothyroidism but, again, those "adrenaline episodes" wouldn't be happening.

    Truly, when was the last time you had one of those "adrenaline episodes"?
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    Last edited by sammy64; 01-30-2012 at 01:38 PM.

     
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    Old 01-30-2012, 11:17 PM   #3
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Hi Sammy,

    Once again, thanks for taking the time to answer my endless questions. I'm trying to educate myself on all this, but I'm seriously confused.

    I'm going to blame brain fog here ....

    Quote: So, your doctor is correct that your TSI interrupts the HPT feedback loop and lowers TSH (yours is not suppressed) but, it does *not* keep your FT4/FT3 in the lower range - TSI would cause elevated FT4/FT3 (unless something else is coming into play)

    Quite honestly, your TSH is a little on the high side for someone that has measurable TSI (or TBII) without Hashi's.

    I see what you are saying about the FT4/FT3 - classic hyperthyroidism. So, I don't understand the role the TSI is playing in my situation. Even with a Dx of Hashitoxicosis, my TSH should be lower than it is? If that's true, any thoughts to what is going on? Is this where the TBII Ab's come in?

    According to my symptom journal, my last notable "adrenaline episode" was on January 3rd. Getting the assay done after an episode would be to see if the Ab's are any higher during that time.

    I think I would have been better off not ever having this test done. It has just confused the situation. My TSI level is higher than normally seen in Hashitoxicosis, my TSH is higher than it should be given my level of TSI ... See what I mean ?

    If you have further thoughts on this or can help me understand this, it would be much appreciated.

    Pam

     
    Old 01-31-2012, 05:12 AM   #4
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Pam

    I can certainly understand your confusion. It took me a l-o-n-g time to fully grasp the antibody stuff....mostly due to brain fog since my former endos kept me hypo.

    OK...here's the deal. While some people with "regular" Hashi's will have a somewhat lower (but, very much in-range) TSH, most people will have TSH > 2.0 and often very much higher. This all depends on how long it took them to get diagnosed and treated.

    People with Graves' that are either hyper or hypo will have suppressed TSH (below-range). They would be hyper if TSI antibodies predominate or hypo if TBII antibodies predominate.

    In summary, people with "regular" Hashi's will have in-range or over-range TSH.

    People with Graves' (hyper or hypo) will have suppressed TSH (below-range).

    People with Hashitoxicosis will have in-range TSH but, on the lower end. (and be testing positive for TSI antibodies).

    I disagree that your TSI antibody level is higher than normally seen in Hashitoxicosis only because I've seen levels that high with other members suffering from it.

    It's only those TBII antibodies that cause hypothyroidism. And, that's where your doctor's statement is "off".

    Yes, the Graves' antibodies interrupt the HPT feedback loop but, the TSI antibodies cause hyPERthyroidism (and suppress TSH).....and the TBII antibodies can cause hyPOthyroidism (but, also suppress TSH).

    Since your TSH is not suppressed, that tells me you don't have TBII antibodies coming into play and, instead, you have good ol' Hashi's "mixing in" with those TSI antibodies.

    Hashi's + TSI = Hashitoxicosis.

    I can understand your frustration at this point. But, the fact that you have had an adrenaline episode quite recently tells me that those TSI antibodies are problematic for you.

    You see, the TSI antibodies erratically stimulate the thyroid to produce hormone. So, when this happens, you will have an "adrenaline episode".

    If you had larger amounts of TSI in your system, you would go hyper.

    And, since TSI stay in the bloodstream for 2-3 months, measuring your TSI level during an "adrenaline episode" really won't provide useful information.

    You have TSI antibodies and, if you want to try to stop having "adrenaline episodes", you'll need to try to reduce those antibodies.

    I think you know I've mentioned Block and Replace Therapy to you as an effective way to lower TSI. Basically, the patient takes a small dose of anti-thyroid drug (usually 5mg Tapazole/methimazole or 50mcg PTU). The ATD has the capacity to lower TSI. The patient would also take thyroid hormone replacement such as Synthroid/levothyroxine to prevent hypothyroidism.

    Another member on here has Hashitoxicosis and has been doing BRT for about 5 months.....she says she no longer has "hypers" (equivalent to your "adrenaline episodes") and her TSI antibody titers are lower.

    I am aware of Graves' patients taking LDN (low-dosed naltrexone) as an effective way to lower TSI.

    You could also try taking some herbal supplements called "adaptogens" that help modulate the immune system (immunomodulators). Rhodiola and reishi mushroom are two examples.

    Another way to lower antibody levels is to try to eliminate environmental triggers such as stress, allergans (both seasonal and food), cigarette smoke, low selenium levels, excess dietary iodine, estrogens and aspartame.

    Increasing your consumption of anti-oxidants might help as well.

    Please continue to ask any questions that come to mind and don't worry about asking me to explain something in a different way.

    We're all in this together.
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    Last edited by sammy64; 01-31-2012 at 06:04 AM.

     
    Old 01-31-2012, 10:05 PM   #5
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Thank You Sammy! This is making more sense to me now.

    Hashi's + TSI = Hashitoxicosis.

    It seems my course of action should be to determine what road to take for reducing the TSI titers.

    If I was to choose BRT, how will that affect my current Levo dose titration process? ... Is BRT going to lower my Free levels further? (heaven forbid)

    I just increased to 50mcg Levo, aiming for +/- 70% of range to eliminate hypo symptoms. I'd hate to throw a kink in this process since it takes so long, but I think I'd trade the delay for relief from the "hypers".

    We all know how hard it is to control environmental triggers - stress and allergens specifically. The others not so hard to avoid. I will look into the adaptogens as another option as well. I don't think I would be a candidate for LDN as I take opioids for chronic neck pain due to disc problems and resultant nerve root compressions.

    Thank heavens we are all in this together - I think more of us progress faster to proper dx and treatment because of the "real life experience" sharing that takes place on this forum.

    Thanks again for your patience and thoughtful reply.

    Pam

     
    Old 02-01-2012, 04:38 AM   #6
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Hi Pam

    I'm glad I was able to make sense.

    Yes, it seems that the key to feeling better with Hashitoxicosis is to reduce those TSI antibody titers (this will also help prevent the development of Graves' hyperthyroidism)....and, of course, be properly medicated for hypothyroidism.

    Yes, the anti-thyroid drug component of BRT can reduce the FreeT4/T3 levels....that is why the usual regimen is 5mg Tapazole/methimazole or 50mg PTU (these are equivalent doses) with an addition 50mcg of Synthroid/levothyroxine to whatever your usual dose might be.

    Of course, there could be the need for further dose tweaking but, just as you mentioned and the other member has mentioned, relief from the "hypers" seems worth it.

    If it were me, I'd want to get that BRT aspect over and done with as soon as possible.

    In regards to the stress and allergan components of environmental triggers....of course, we can't always avoid stress but, we can improve our response to it. Yoga/meditation go a long way with this. And, we can certainly avoid foods that cause an allergic reaction....and possibly stay indoors when outside allergans are more prevalent.

    I understand your thoughts about LDN.....I had entertained thoughts of trying it but, taking reishi mushroom supplements and doing yoga once/week seems to have helped reduce my TSI and TBII. (yes, I am still testing positive for both and the TBII are "winning" since I'm hypo).

    I also starting having smoothies for lunch since last fall. Included in my smoothie are mixed berries (lots of antioxidants) and chia seeds (great source of omega 3's which reduce inflammation). It's hard to describe but, I feel SO much better "inside" since smoothies have become part of my life.

    I haven't had antibody testing since I've been having smoothies and plan to do so in the next few months. I'm curious.

    I completely agree with you about the benefits of forum participation. I highly doubt I would be feeling as good as I do if forum members didn't share their experiences and point me in the right direction for research - one needs to know the "buzz words" to research successfully.

    It's a pleasure to work with you and it will be an even bigger pleasure to know that you will finally start feeling better.

    Please continue to keep in touch.

    Sammy
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    Old 02-01-2012, 05:14 AM   #7
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    I can only second everything Sammy said.

    it's likely that BRT would lower your levels but that can happen just like that too. (besides although I understand you don't want to throw a kink in the process, BUT when those TSI's flare up, they can do that too.)
    one thing I'd like to add, it's important to be properly supplemented since hypo can increase the antibodyproduction.

    hang in there!

    Last edited by lisa789; 02-01-2012 at 05:31 AM.

     
    Old 02-02-2012, 06:08 PM   #8
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Hi Pam, I was just wondering what your labs were prior to going on thyroid meds? I have a similar TSI to you but "normal" labs and hyper symptoms. Just trying to figure out if I am dealing with euthyroid Graves, hashitoxicosis, hypothyroid Graves? It is so confusing!

     
    Old 02-02-2012, 08:39 PM   #9
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Hello Ktay14 -

    Confusing indeed !!

    My labs (listed blow) were "in normal range" too, but I had HypoT symptoms galore. Mixed in all this time (and prior to) I had fleeting episodes of "hyper". Took me a lot of time, research and many doctors before I finally found one willing to listen and start a trial of Levothyroxine. Dx'd Hypothyroid, MNG.

    Are your hyper symptoms "fleeting" or all the time? Do you mind sharing your lab results (including ranges since they vary lab to lab) and your TSI level ? I have to wonder if your "normal" labs are YOUR normal/optimal levels.

    Have you reviewed the HypoT symptoms list? Many symptoms we think are HYPER (palpitations, anxiety, air hunger...) can be HYPO symptoms.

    It is very confusing to sort out the symptoms when in our situation - normal or low Frees & TSH with elevated TSI Ab's.

    **** February 2010 ****
    TSH = 1.86 ............. (.40-4.5)
    FT4 = 1.2 ................ (0.8-1.6)
    FT3 = 2.7 ................ (1.6-5.6)
    Anti TPO Ab = <10 .... (0-34)

    (Doctor said I was "normal". No thyroid problem)

    **** May 2011 ****
    TSH = 1.68 ............. (.358-3.74)
    FT4 = 1.1 ................ (0.8-1.5)
    FT3 = 3.2 ................ (2.2-4.0)

    (Doctor said I was still "normal". Found new doctor. #5 )

    09/28/11 Started LevoT 25mcg

    **** October 2011 ****
    TSH = .989 ............. (.358-3.74)
    FT4 = 1.0 ................ (0.8-1.5)
    FT3 = 3.0 ................ (2.2-4.0)

    **** December 2011 ****
    TSH = 1.13 ...... (.358-3.74)
    FT4 = 1.0 ......... (0.8-1.5)
    FT3 = 2.7 ........ (2.2-4.0)
    Anti TPO Ab = < 10 .... (< 40)
    Anti TG Ab = < 20 .... (< 35)
    ......TSI Ab = 105 ....... (<=110)

    Levo dose increased to 37.5mcg after Dec. labs. A month later increased to 50mcg based on continued hypo symptoms.

    My doctor and I are just starting to investigate the elevated TSI. I have a tentative Dx of Hashitoxicosis. We have not discussed the Block & Replace treatment yet.

    I would love to compare labs, doctor's thoughts etc. with you. If our labs are similar, maybe it would lead to some clarity for both of us.

    Pam

    EDIT: I could go back through your previous posts to get your story. Duh! LOL

    Last edited by ABQpam; 02-02-2012 at 08:58 PM.

     
    Old 02-02-2012, 08:53 PM   #10
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Quote:
    Originally Posted by lisa789 View Post
    I can only second everything Sammy said.

    it's likely that BRT would lower your levels but that can happen just like that too. (besides although I understand you don't want to throw a kink in the process, BUT when those TSI's flare up, they can do that too.)
    one thing I'd like to add, it's important to be properly supplemented since hypo can increase the antibodyproduction.

    hang in there!
    Thanks for chiming in Lisa789. WOW - I was not aware being Hypo could increase Ab production. What a complicated mess to have - huh!?

    Do I remember correctly you had Hyper labs at some point, but then went Hypo? Have the ATD brought your TSI titers down? How is the T4 supplementing going?

    I'm just starting on my journey toward good Free levels - boy I hate to interrupt that with B&R therapy. But I hear you that it is worth it to be rid of the "hypers"!

    How are you feeling these days?

    Hugs,
    Pam

     
    Old 02-02-2012, 11:36 PM   #11
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    it sure is one complicated mess.

    Before I was put on thyroid meds you mean? No when this journey started I was hypo with hypolabs. Yet the thing was, I kept having those hyperswings. I needed the meds, but they made me much worse instead of better. My symptoms did not fit the labs most of the time.
    Yes BRT has brought my TSI's down. They are still elevated together with the rest, but decreasing so that's already good.
    supplementation is going good, still searching for the proper dosage, but other then that no more hyperswings.


     
    Old 02-03-2012, 12:31 AM   #12
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Hello Lisa789.

    Thanks for setting me straight. LOL. I read so much, guess I was confused with your history. I'll make the time to go back and read earlier posts to understand your story. Might help me understand mine.

    I'm so glad you got relief from the hyper swings. They are truly awful. Terrifying at times for me. I'm relaxing about them some knowing (hoping) they are truly "hyper swings" instead of heart problem.

    I don't know what time it is where you are, but it's late here - 1:00am. I should really be asleep. My insomnia is awful. I always feel more energetic & normal in the evening and late into the night. It's like "I feel pretty good - why would I want to go to bed!" I know I'll have to pry myself out of bed and be HypoT fatigued all day tomorrow. Same cycle every day.

    Glad to hear your titers are down and you are on your way to getting better! Hope you get back to feeling like your old self again soon.

    Hugs,

    Pam

     
    Old 02-03-2012, 12:44 AM   #13
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    hi there,

    Over here it's morning and I so know what you mean with that cycle every day again. In the evening/night I feel better and now I'm hypofoggy until it's evening again. crazy thyroid.

    hope you get some sleep!
    feel free to ask if you have any questions


    Last edited by lisa789; 02-03-2012 at 12:47 AM.

     
    Old 02-03-2012, 04:43 AM   #14
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Quote:
    Originally Posted by ABQpam View Post
    Hello Ktay14 -

    Confusing indeed !!

    My labs (listed blow) were "in normal range" too, but I had HypoT symptoms galore. Mixed in all this time (and prior to) I had fleeting episodes of "hyper". Took me a lot of time, research and many doctors before I finally found one willing to listen and start a trial of Levothyroxine. Dx'd Hypothyroid, MNG.

    Are your hyper symptoms "fleeting" or all the time? Do you mind sharing your lab results (including ranges since they vary lab to lab) and your TSI level ? I have to wonder if your "normal" labs are YOUR normal/optimal levels.

    Have you reviewed the HypoT symptoms list? Many symptoms we think are HYPER (palpitations, anxiety, air hunger...) can be HYPO symptoms.

    It is very confusing to sort out the symptoms when in our situation - normal or low Frees & TSH with elevated TSI Ab's.

    **** February 2010 ****
    TSH = 1.86 ............. (.40-4.5)
    FT4 = 1.2 ................ (0.8-1.6)
    FT3 = 2.7 ................ (1.6-5.6)
    Anti TPO Ab = <10 .... (0-34)

    (Doctor said I was "normal". No thyroid problem)

    **** May 2011 ****
    TSH = 1.68 ............. (.358-3.74)
    FT4 = 1.1 ................ (0.8-1.5)
    FT3 = 3.2 ................ (2.2-4.0)

    (Doctor said I was still "normal". Found new doctor. #5 )

    09/28/11 Started LevoT 25mcg

    **** October 2011 ****
    TSH = .989 ............. (.358-3.74)
    FT4 = 1.0 ................ (0.8-1.5)
    FT3 = 3.0 ................ (2.2-4.0)

    **** December 2011 ****
    TSH = 1.13 ...... (.358-3.74)
    FT4 = 1.0 ......... (0.8-1.5)
    FT3 = 2.7 ........ (2.2-4.0)
    Anti TPO Ab = < 10 .... (< 40)
    Anti TG Ab = < 20 .... (< 35)
    ......TSI Ab = 105 ....... (<=110)

    Levo dose increased to 37.5mcg after Dec. labs. A month later increased to 50mcg based on continued hypo symptoms.

    My doctor and I are just starting to investigate the elevated TSI. I have a tentative Dx of Hashitoxicosis. We have not discussed the Block & Replace treatment yet.

    I would love to compare labs, doctor's thoughts etc. with you. If our labs are similar, maybe it would lead to some clarity for both of us.

    Pam

    EDIT: I could go back through your previous posts to get your story. Duh! LOL
    Pam, wow...our labs are almost identical! When I have more time later on I will post but truly they are almost the same. For a while I thought I was hypo....had tons of hypo symptoms then all of sudden the hyper symptoms came raging on. I had one FT4 that was much higher then it had ever been.... 1.45 and a girl on another forum suggested getting the TSI and it came back 100. I have a big family history of thyroid dysfunction but right now I cannot get a doctor to help b/c my labs are "normal". It is so frustrating!

     
    Old 02-04-2012, 10:39 PM   #15
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    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
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    Re: Graves "Burn Out" - HypoT - Elevated TSI ...

    Hi Ktay -

    I completely understand your frustration - been there. So sorry you are having to deal with idiot doctors that only speak "normal". I endured 4 of them. My FT4 / FT3 averaged just below 50% before I started Levo. Since I started on such a low dose (for cautionary reasons) my levels have tanked to around 28%. It's all part of the process...

    (I did look through your older posts) Geez...you have been dealing with this for a long time. I'm so sorry. You got Rx for Armour in 03/11 - did you decide not to start it because of the TSI level and whatever it may represent? I can relate to why you are hesitant. My doc offered Armour, but I'm afraid of the T3 increasing the hyper symptoms. (Just my thyroid paranoia. LOL)

    I encourage you to keep searching for a doctor that will treat you. I went through some dark days and just gave up for awhile. You more likely will find help in the form of a DO, Internal Medicine or FP, rather than an Endo.

    Hope you find a savvy doctor soon. You deserve to know what's going on with your thyroid and get the appropriate treatment.

    Hugs,

    Pam

     
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