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Losing hope... Help?
Hi everyone, I'm new here & looking for advice & information that may help me. If you have any suggestions, I would be very grateful.
I was diagnosed with "mild hypothyroidism" in June 2013 & started on 25mcg of Levothyroxine. I was diagnosed with Hashimoto's in September 2013. I had an ultrasound in January 2014 which confirmed a multinodular goiter with the largest nodule measuring 10mm. I began seeing an endocrinologist in April 2014 & was switched from brand name Synthroid 75mcg & generic Cytomel 10mcg to Armour 60mg in July 2014. Ever since then, I have declined drastically & my lab levels are all out of whack. TSH & FT3 rose, but FT4 fell.
In all this time, I've never been "optimal" & none of my symptoms have been resolved or even greatly improved. In fact, they are now as bad as they ever were to begin with. I'm an emotional wreck, can't get out of bed & stay awake, can't take deep breaths (my worst symptom IMO), among a long list of symptoms. I'm totally confused about all of this & feel like these doctors are never going to help me feel better. What can I do??? I have an appointment this afternoon with my endocrinologist, but here are my last labs from my primary on 11/3/14.
TSH 2.450 (0.450-4.500)
FT4 0.87 (0.82-1.77)
FT3 3.6 (2.0-4.4)
Thyroxine 6.3 (4.5-12.0)
T3 Uptake 23% (24-39%)
Free Thyroxine Index 1.4 (1.2-4.9)
I don't know what to do, but feel like I'm slowly & painfully dying & they just don't care at all.
I was diagnosed with "mild hypothyroidism" in June 2013 & started on 25mcg of Levothyroxine. I was diagnosed with Hashimoto's in September 2013. I had an ultrasound in January 2014 which confirmed a multinodular goiter with the largest nodule measuring 10mm. I began seeing an endocrinologist in April 2014 & was switched from brand name Synthroid 75mcg & generic Cytomel 10mcg to Armour 60mg in July 2014. Ever since then, I have declined drastically & my lab levels are all out of whack. TSH & FT3 rose, but FT4 fell.
In all this time, I've never been "optimal" & none of my symptoms have been resolved or even greatly improved. In fact, they are now as bad as they ever were to begin with. I'm an emotional wreck, can't get out of bed & stay awake, can't take deep breaths (my worst symptom IMO), among a long list of symptoms. I'm totally confused about all of this & feel like these doctors are never going to help me feel better. What can I do??? I have an appointment this afternoon with my endocrinologist, but here are my last labs from my primary on 11/3/14.
TSH 2.450 (0.450-4.500)
FT4 0.87 (0.82-1.77)
FT3 3.6 (2.0-4.4)
Thyroxine 6.3 (4.5-12.0)
T3 Uptake 23% (24-39%)
Free Thyroxine Index 1.4 (1.2-4.9)
I don't know what to do, but feel like I'm slowly & painfully dying & they just don't care at all.
Just sent a PM with doctor info. To access, just click on your name and go to your personal page. Then click on messages.
That's closer than I've driven to some I've seen. I don't care how far I have to travel if it means being treated properly & getting rid of these horrible symptoms.
The best possibility I have for you right now is a doctor in Norman. Is that close enough to work for you?
I've been through many doctors, from Chiropractors to PAs, MDs & DOs, my OBGYN, Internists to Endocrinologists. I do know how hard it is to find a good thyoid doctor. I'm so tired of hearing "everything is within range". I'm in southern OK. If anyone has doctor recommendations, I'd very much appreciate them! Thank you for trying to help with this.
Just because the new doctor is an Endo does not mean he will be a good thyroid doctor. Many of them specialize in diabetes, not thyroid. Also many of them have the "Immaculate TSH Belief" and only want to diagnose and treat based on TSH. That does not work. Also if they go beyond TSH they will typically only test for Free T4 and then use "Reference range Endocrinology" and tell you that a test result that falls anywhere within the so-called "normal' range is adequate. That is also wrong. So the chances are small that your new doctor is a good thyroid doctor, as i described previously.
If you will tell us your location perhaps we can help locate a good thyroid doctor in your area.
If you will tell us your location perhaps we can help locate a good thyroid doctor in your area.
Thank you for your response & further insight. Since my last appointment was cancelled, I called to see if I could get another appointment with my primary & was informed that he is closing his practice & relocating to California. So, I guess I have to wait until my first appointment with the new endo on 2/2 to have more lab work done & hope & pray that she is better than any other doctor I've seen in the past 2 years in managing thyroid treatment.
I'm so exhausted I sleep way too much & don't even feel rested after 12+ hours of sleep, but have insomnia at night. I'm back to where I can barely function, cold all the time with low body temps, have been having frequent headaches, rapid weight gain despite barely eating, achy chest pain with palpitations & the constant inability to take satisfying deep breaths (which they've all said "can't be a symptom of hypothyroidism"), just to list a few things going on, yet no one I've seen seems concerned. They tell me I'm "just depressed" & "have anxiety" & look at me like I'm a hypochondriac. I guess because a 32 year old woman shouldn't tell them she feels like she's slowly dying & is just trying to get someone to help her feel like a living human again?
I've even been to the ER because I've felt so horrible with a resting pulse of ~130 & I'm scared that the longer these doctors let all of this go on, the more damage it will ultimately do to other organs, like my heart, lungs & brain. It's interfering with every part of my life, even showering is a chore some days & the depression it's caused that they think is the cause of everything (I'm sure a lot of thyroid patients have heard that one) has left me an emotional wreck. I can't remember the last day I didn't cry about something, usually stupid things I used to laugh about. I'm at the point where I'm considering increasing my own dosage.
I'm so exhausted I sleep way too much & don't even feel rested after 12+ hours of sleep, but have insomnia at night. I'm back to where I can barely function, cold all the time with low body temps, have been having frequent headaches, rapid weight gain despite barely eating, achy chest pain with palpitations & the constant inability to take satisfying deep breaths (which they've all said "can't be a symptom of hypothyroidism"), just to list a few things going on, yet no one I've seen seems concerned. They tell me I'm "just depressed" & "have anxiety" & look at me like I'm a hypochondriac. I guess because a 32 year old woman shouldn't tell them she feels like she's slowly dying & is just trying to get someone to help her feel like a living human again?
I've even been to the ER because I've felt so horrible with a resting pulse of ~130 & I'm scared that the longer these doctors let all of this go on, the more damage it will ultimately do to other organs, like my heart, lungs & brain. It's interfering with every part of my life, even showering is a chore some days & the depression it's caused that they think is the cause of everything (I'm sure a lot of thyroid patients have heard that one) has left me an emotional wreck. I can't remember the last day I didn't cry about something, usually stupid things I used to laugh about. I'm at the point where I'm considering increasing my own dosage.
It is always useful to know the level of Reverse T3 taken at the same time as Free T3 and free T4 tests; however, high reverse T3 levels are not a very common occurrence for hypo patients,
"Low cortisol/adrenal disfunction. AD often accompanies hypo and gives low T4 with much higher t3: Free t3 is pooling in the blood unable to reach cells due to low cortisol. A saliva (or urine) four-point cortisol test can confirm this." So if Free T3 is still high, that is something else to ask the doctor about, a four point saliva, or urine, cortisol test." Also, your ferritin level is good, so no reason to suspect that as a contributor.
Unless you have evidence supporting the possibility of adrenal dysfunction, I would be more inclined to think that your Free T3 and Free T4 levels are a result of your med and dosage. You are only taking 39 mcg of T4, along with 10 mcg of T3. Previously you were taking 75 mcg of T4 along with the 10 mcg of T3. As I said it never hurts to know Reverse T3 levels, but I think I wold spend my energy on trying to influence the doctor to return meds to prior level and continue to gradually raise both T4 and T3 meds as necessary to relieve symptoms.
A good thyroid doctor will test and adjust Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Many members say that symptom relief required Free T3 in the upper part of its range (with T3 med dosage deferred until after blood draw for tests), and Free T4 around the middle of its range, at minimum. If your doctor has a problem with clinical treatment you might give him a copy of this link and try to persuade him to consider it. If he is unwilling then you will need to find a good thyroid doctor that will do so.
http://www.hormonerestoration.com/Thyroid.html
"Low cortisol/adrenal disfunction. AD often accompanies hypo and gives low T4 with much higher t3: Free t3 is pooling in the blood unable to reach cells due to low cortisol. A saliva (or urine) four-point cortisol test can confirm this." So if Free T3 is still high, that is something else to ask the doctor about, a four point saliva, or urine, cortisol test." Also, your ferritin level is good, so no reason to suspect that as a contributor.
Unless you have evidence supporting the possibility of adrenal dysfunction, I would be more inclined to think that your Free T3 and Free T4 levels are a result of your med and dosage. You are only taking 39 mcg of T4, along with 10 mcg of T3. Previously you were taking 75 mcg of T4 along with the 10 mcg of T3. As I said it never hurts to know Reverse T3 levels, but I think I wold spend my energy on trying to influence the doctor to return meds to prior level and continue to gradually raise both T4 and T3 meds as necessary to relieve symptoms.
A good thyroid doctor will test and adjust Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Many members say that symptom relief required Free T3 in the upper part of its range (with T3 med dosage deferred until after blood draw for tests), and Free T4 around the middle of its range, at minimum. If your doctor has a problem with clinical treatment you might give him a copy of this link and try to persuade him to consider it. If he is unwilling then you will need to find a good thyroid doctor that will do so.
http://www.hormonerestoration.com/Thyroid.html
Thank you for your response. My endo appointment that was scheduled for this afternoon has been cancelled without reason & an option to reschedule mid-May. I have an appointment with a new endo on 2/2, so today would have been my last appointment with this one anyway. I did receive my iron panel results from lab work I had done on 1/7/15 by my primary.
Iron 50 (35-155)
% Sat 14 (15-55)
TIBC 356 (250-450)
Ferritin 91 (15-150)
My last vitamin D was done on 5/21/14 when I was feeling the best I have.
55.0 (30.0-100.0) This is up considerably taking mega doses for a few weeks to begin with & continuing with 10,000IU/day. My lowest was 11.1.
I haven't had B12, Folate & Magnesium run since September 2013, despite asking for the tests, but do know they were within range with room for improvement.
The endo I've been seeing refused to check Reverse T3, his exact words were "that's junk, it's not important" & refused to do an FNA on even my largest nodule. He quickly did an ultrasound in his office, which he never gave me the results of, only said "this is Hashimoto's thyroid, I wouldn't worry about this, recheck 1 year". This is all unacceptable to me. He may not be worried about something growing in my neck, but I am. Reverse T3 has been a concern of mine because despite rising FT3 levels lately, my symptoms have worsened, which makes me wonder if it's just pooling in my blood unable to be used because RT3 is blocking receptor cells. And as you pointed out, he cut my T4 dosage almost in half. So, it's no wonder I regressed so quickly since starting Armour last summer.
Thank you again for sharing your knowledge. Any & all information, opinions, suggestions, etc are very much appreciated!
Iron 50 (35-155)
% Sat 14 (15-55)
TIBC 356 (250-450)
Ferritin 91 (15-150)
My last vitamin D was done on 5/21/14 when I was feeling the best I have.
55.0 (30.0-100.0) This is up considerably taking mega doses for a few weeks to begin with & continuing with 10,000IU/day. My lowest was 11.1.
I haven't had B12, Folate & Magnesium run since September 2013, despite asking for the tests, but do know they were within range with room for improvement.
The endo I've been seeing refused to check Reverse T3, his exact words were "that's junk, it's not important" & refused to do an FNA on even my largest nodule. He quickly did an ultrasound in his office, which he never gave me the results of, only said "this is Hashimoto's thyroid, I wouldn't worry about this, recheck 1 year". This is all unacceptable to me. He may not be worried about something growing in my neck, but I am. Reverse T3 has been a concern of mine because despite rising FT3 levels lately, my symptoms have worsened, which makes me wonder if it's just pooling in my blood unable to be used because RT3 is blocking receptor cells. And as you pointed out, he cut my T4 dosage almost in half. So, it's no wonder I regressed so quickly since starting Armour last summer.
Thank you again for sharing your knowledge. Any & all information, opinions, suggestions, etc are very much appreciated!
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Second, T3 is very fast acting and if taken before the blood draw for the tests, can cause a false high reading for the Free T3. I suspect that your Free T3 result is not representative. Best to delay taking T3 until after the blood draw.
Also keep in mind that, in the words of a good thyroid doctor, ""The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms."
So, with your symptoms and your lab test results, there is good evidence that you are hypothyroid still. A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results. So you need to find out from the doctor if he is going to be willing to treat clinically as described. Be aware that many Endos will not do so, preferring instead to treat based on TSH level. That doesn't work.
Hypo patients are also frequently too low in the range for Vitamin D, B12 and ferritin. Deficiency in any of those can also cause symptoms, some of which mimic hypothyroidism. So it would be good to test for all 3.
I hop this give you some useful info in prep for your appointment. Please let us know how it went and we'll be glad to help any way we can.