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Any Suggestions??
Hello... I'm hoping someone might be able to shed some insight on the living hell I've been in for over the last year. I'm a 36 year old female who was diagnosed with Graves' Disease in March of 2010. I had a Thyroid storm early that month and my Endo began the process of trying to regulate me. He wanted to Radiate my Thyroid and I refused, instead opting to research the disease and fight this my way. After three months of PTU, I was regulated, but I'd began to gain weight and my numbers were borderline low. I'd been over-medicated. I went to see the Dr. armed with information and he agreed we could try my way until my numbers came back off. I took all iodine rich food out of my diet, cut all iodine containing supplements and basically went on a high-protein diet. My levels were great, I felt great and for over four (4) years I stayed in remission by doing what I had researched, and I kept my Thyroid. An extreme event triggered my Graves' last August and I began gaining weight, struggling with exhaustion, etc. By December of last year, I'd gained over 10 pounds since August. Things continued to get worse but my numbers weren't showing anything 'wrong,' they were just getting lower for my normals. By March of this year, I could barely function.... exhaustion, fingernail issues, losing hair, night sweats, constipation, light or non-existent menstrual periods, constantly hungry (but not eating above my calorie range) a bad taste in my mouth daily and continued weight gain. By late-May, my numbers finally showed I was slightly low, on the hypo end of the scale. My Dr. put me on 25 mcg of Levoxyl. By mid-June, I was worse. We bumped it up to 50 mcg. At this point I had headaches so bad I couldn't focus my eyes on a daily basis. It was like living with a migraine every day. In early August, he bumped me up to 75 mcg -- switching me to brand name Synthroid at this point. That didn't help so he bumped me up to 88 mcg, which helped with the exhaustion. But even though I felt better, I still had all my symptoms and carried a daily headache. In late August, he added 10 mcg Cytomel to my 88 mcg of Synthroid daily. It was again an improvement but not 100% and I still had a daily headache. I played with the Cytomel on my own and figured out that 15 mcg - 20 mcg of Cytomel daily along with my 88 mcg of Synthroid was helping. Headaches are finally gone... but I continue to gain weight along the 1 - 2 lbs. per week route. I also still have adema, constipation, reduced menstrual flow, bad nails, etc. So frustrating, It's affecting my social life, my professional life, etc. I can't wear any of my clothes and I don't want to see photos of myself as I'm just disgusted. At 5' 2" and 152 lbs, I'm 20 pounds heavier than I've ever been... and I hate it. If I were sitting on my behind eating Snickers daily, I'd understand, but I workout with a personal trainer, spend 5 - 6 days a weeks in the gym, work extremely physicial events and aim for a burn of 500 - 700 calories daily at the gym. I'm also eating 1,300 calories a day... which is the low end of my required with my workout plan. I eat well, low-fat, etc. I've watched the scale continue to climb, my fingernails are still scary looking and I still have some symptoms of being hypo... including headache as they Cytomel wears off before the next does. Does anyone have any suggestions as to what I'm doing wrong... what my meds might need adjusted to... or a suggestion of if Amour might be a better route?? Any all suggestions are welcome... my ears are open. -- Thank you!
Saw new Endo for 2nd appointment yesterday... reviewed lab results. FINALLY.. some answers. My thyroid levels are low... no antibodies at this time. Also confirmed Estrogen dominance issue. My body isn't making any progesterone or testosterone. I'm not anywhere close to menopause but the inbalances (caused by long-term birth control pill usage) are causing the issues. He's switched me to compounded Thyroid and put me on two creams. Follow-up in 6 weeks. Looking forward to seeing if things start turning around slowly in that time-frame!!
Saw a new doctor (Endo) yesterday that seems to have a much more progressive and new-age approach to Thyroid, Pituitary & Female Hormone management. Cautiously optimistic! He ran over 40 tests, completed a thyroid scan. I have my second appointment in 2 weeks. Hoping he'll find some answers and get me back on track. Anything is better than the resistance I've been dealing with at my other Endo's office. Hope to have positive steps to report in a couple of weeks following 1/19/15 appointment!!
Pretty excited... have an appointment with a new Endo that treats 'outside' of the box on 1/5/15. He's going to run the whole gauntlet of labwork and also believes in Adrenal treatment. At least I feel like I'm doing something vs. waiting on a doctor to do nothing. Look for an update the later part of January! Happy Holidays to all!!
Hello,
the advice from gimel is good. Another aspect to look at is your diet.
You are eating 1300 calories /day and exercising 500 - 700 calories and eating low fat diet. You weight 152 lbs. With this weight you should need to eat about 1200 calories / day just for your metabolic needs, and then you should eat more for your exercise requirements.
Part of why you are feeling so bad may be because you are on starvation diet (this is probably why your hair and nails are so bad). Such a starvation diet also puts incredible stress on your adrenals AND can suppress your thyroid.
I would suggest that you radically rethink your diet. Eat low - very low carb, moderate protein and high healthy and minimally / non-processed fat (butter, cream, animal fats, cold pressed nut and olive oils, including coconut, avocado). You can research the approach online. Plenty of non-starchy vegetables. By eating low carb and high fat, you can get enough calories for your body, but should not gain weight.
the advice from gimel is good. Another aspect to look at is your diet.
You are eating 1300 calories /day and exercising 500 - 700 calories and eating low fat diet. You weight 152 lbs. With this weight you should need to eat about 1200 calories / day just for your metabolic needs, and then you should eat more for your exercise requirements.
Part of why you are feeling so bad may be because you are on starvation diet (this is probably why your hair and nails are so bad). Such a starvation diet also puts incredible stress on your adrenals AND can suppress your thyroid.
I would suggest that you radically rethink your diet. Eat low - very low carb, moderate protein and high healthy and minimally / non-processed fat (butter, cream, animal fats, cold pressed nut and olive oils, including coconut, avocado). You can research the approach online. Plenty of non-starchy vegetables. By eating low carb and high fat, you can get enough calories for your body, but should not gain weight.
If you think your doctor will have problems with increasing your dosage, then you should make full use of the info I gave you in the link above. If that doesn't convince your doctor then we may have to help you find a good thyroid doctor.
Your ferritin result is on the ragged edge of recommended level. Dependent o the source, the recommended level is somewhere between 60 and 80, so you could stand to add a small amount, say 25 mg, of a good iron supplement.
In view of your ferritin, your cortisol and the stress you mention I really recommend that you get tested for Reverse T3 along with Free T3 and Free T4, at the first opportunity. And delay taking your morning dose of thyroid med until after blood draw. Reverse T3 is the mirror image of T3, but not biologically active like T3. Reverse T3 is a normal product of conversion of T4, but too much Reverse T3 adversely affects the effect of Free T3 and can cause hypo symptoms also.
Your ferritin result is on the ragged edge of recommended level. Dependent o the source, the recommended level is somewhere between 60 and 80, so you could stand to add a small amount, say 25 mg, of a good iron supplement.
In view of your ferritin, your cortisol and the stress you mention I really recommend that you get tested for Reverse T3 along with Free T3 and Free T4, at the first opportunity. And delay taking your morning dose of thyroid med until after blood draw. Reverse T3 is the mirror image of T3, but not biologically active like T3. Reverse T3 is a normal product of conversion of T4, but too much Reverse T3 adversely affects the effect of Free T3 and can cause hypo symptoms also.
In addition to the comment I just posted above... my Ferritin lab just came over.
It read:
55 ng/ML 15 - 150 ng/ML
Wondering if that's considered low?
It read:
55 ng/ML 15 - 150 ng/ML
Wondering if that's considered low?
Again... thank you VERY much. This is all along the lines of what I've been thinking based on my own research. I'd like to increase my Armour dosage to 2 grains daily... working up to 2 1/2 grains. I think that's the answer too.
My body seems to like what it's getting with Armour... I just don't think it's enough to take care of the whole picture yet.
I do split my dose.. 60 mg (waiting 1 hr. before eating) in the AM, 30 mg in the evening (again, waiting an hour to eat) and it helps to do so as you'd suggested. My doctor was confused as to why this works but he's not challenging it... yet.
I do think he'll argue upping my dosage...
I'm to get my Ferritin result back today... I'm interested in seeing this one too.
Will definitely do the Cortisol test... I believe that my cortisol is wreaking havoc on things too. I have an insanely stressful job (that I love) but the past 24 months have been very rough.
Thank you again... I'm going to read the article you suggested tonight!
:-)
My body seems to like what it's getting with Armour... I just don't think it's enough to take care of the whole picture yet.
I do split my dose.. 60 mg (waiting 1 hr. before eating) in the AM, 30 mg in the evening (again, waiting an hour to eat) and it helps to do so as you'd suggested. My doctor was confused as to why this works but he's not challenging it... yet.
I do think he'll argue upping my dosage...
I'm to get my Ferritin result back today... I'm interested in seeing this one too.
Will definitely do the Cortisol test... I believe that my cortisol is wreaking havoc on things too. I have an insanely stressful job (that I love) but the past 24 months have been very rough.
Thank you again... I'm going to read the article you suggested tonight!
:-)
Since you took your med before blood draw for tests, that may account for the inconsistency of your high Free T3 level. I strongly suggest that, in the future, you delay your med dosage until after the blood draw. Also, if not being done now, I suggest splitting your dose and taking half in the morning and half in the early afternoon. Since T3 is so fast acting, splitting the dose helps level out the effect throughout the day.
As for your Armour dose, the prior dose of 88 mcg of T4 and 20 mcg of T4 equates to about 2 1/4 grains of Armour. I say that because each grain (60 mg) contains 39 mcg of T4 and 9 mcg of T3. So, your dose after the change to Armour was lower by a considerable amount. Although you can use the reference ranges and test results as a guidelines for making dose changes, recall that the most effective method is to treat clinically by adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Also, Free T3 correlates best with hypo symptoms. So, yes, based on your symptoms and your Free T4 level I'd say that a gradual increase in your Armour would help. If you do that, then you should try to get tested for both Free T3 and Free T4 in about 4 weeks after any change, in order to monitor the effect.
Somehow I missed that you had a cortisol test and that it was on the high side. The four point saliva cortisol test will be interesting. In case your doctor doesn't mention it, note in the following link that "high cortisol levels decrease the conversion of thyroxine (T4) to triiodothyronine (T3) and increase levels of reverse thyroid hormone (rT3). Together this means lower thyroid function and hypothyroid." So I also suggest that along with the Free T3 and Free T4, you should request a test for Reverse T3. Also, if not tested for ferritin, that should be done. Your Vitamin D test result was adequate.
http://www.metaboliceffect.com/hormones-stress-cortisol/
As for your Armour dose, the prior dose of 88 mcg of T4 and 20 mcg of T4 equates to about 2 1/4 grains of Armour. I say that because each grain (60 mg) contains 39 mcg of T4 and 9 mcg of T3. So, your dose after the change to Armour was lower by a considerable amount. Although you can use the reference ranges and test results as a guidelines for making dose changes, recall that the most effective method is to treat clinically by adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Also, Free T3 correlates best with hypo symptoms. So, yes, based on your symptoms and your Free T4 level I'd say that a gradual increase in your Armour would help. If you do that, then you should try to get tested for both Free T3 and Free T4 in about 4 weeks after any change, in order to monitor the effect.
Somehow I missed that you had a cortisol test and that it was on the high side. The four point saliva cortisol test will be interesting. In case your doctor doesn't mention it, note in the following link that "high cortisol levels decrease the conversion of thyroxine (T4) to triiodothyronine (T3) and increase levels of reverse thyroid hormone (rT3). Together this means lower thyroid function and hypothyroid." So I also suggest that along with the Free T3 and Free T4, you should request a test for Reverse T3. Also, if not tested for ferritin, that should be done. Your Vitamin D test result was adequate.
http://www.metaboliceffect.com/hormones-stress-cortisol/
Can I ask you what the transfer dose of Armour would be to 88 mcg Synthroid/20 Cytomel mcg? I'm trying to learn the conversions and I'm basically on my own as my doctor is willing to let me use Armour but he's not suggesting anything... I have to do it myself. Any suggestions on the dose are appreciated.
I did take my medication before my bloodwork... I know that can cause issues but I'm having so much issue with level changes that I try to take it at the same time each day. I figured this would cause issues with my readings. I'd also fasted 13 hours before having the labs done, as I was asked to do. (12 hr fast.)
He (doctor) completely ignored my suggestion that I might have adrenal disfunction in my appointment last week. To the point of suggesting it was 'malarky.' Yet, when my labs showed up, the nurse called, told me she's sending me a saliva cortisol test in the mail. It arrived Saturday.
I truly believe I've got either a) a cortisol issue/adrenal issue b) a t3/t4 conversion issue or c) that I'm not on enough Armour to help correct the problem.
Do you think upping my dose of Armour might alleviate some of these issues?
Thanks again -- much appreciated!!
I did take my medication before my bloodwork... I know that can cause issues but I'm having so much issue with level changes that I try to take it at the same time each day. I figured this would cause issues with my readings. I'd also fasted 13 hours before having the labs done, as I was asked to do. (12 hr fast.)
He (doctor) completely ignored my suggestion that I might have adrenal disfunction in my appointment last week. To the point of suggesting it was 'malarky.' Yet, when my labs showed up, the nurse called, told me she's sending me a saliva cortisol test in the mail. It arrived Saturday.
I truly believe I've got either a) a cortisol issue/adrenal issue b) a t3/t4 conversion issue or c) that I'm not on enough Armour to help correct the problem.
Do you think upping my dose of Armour might alleviate some of these issues?
Thanks again -- much appreciated!!
Now that I know the measurement units and reference range for your Free T3, I have to ask if you took your med before the blood draw for tests. Also, you seemed to be improving previously but your doctor changed your med. You went from 88 mcgof T4 and 10-20 mcg of T3 down to 90 mg of Armour, which is 58 mcg of T4 and 13.5 mcg of T3. Why was it changed?
If you did not take your Armour med before blood draw, I would wonder about the possibility of your T3 pooling in the blood due to low adrenal. Note the following info.
"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."
So, have you been tested for the possibility of low cortisol? The best way to check is the saliva cortisol test done 4 times over a 24 hour period.
Whatever the reason(s) we need to try and figure out why you have those hypo symptoms.
If you did not take your Armour med before blood draw, I would wonder about the possibility of your T3 pooling in the blood due to low adrenal. Note the following info.
"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."
So, have you been tested for the possibility of low cortisol? The best way to check is the saliva cortisol test done 4 times over a 24 hour period.
Whatever the reason(s) we need to try and figure out why you have those hypo symptoms.
TSH 0.203 uIU/mL 0.450-4.500
T3, Free 5.8 pg/ML 2.0 - 4.4
T4, Free .96 ng/dL 0.82 - 1.77
Cortisol 18.3 ug/dL 2.3 - 19.4
Does this help?
My VLDL Cholesterol & Triglycerides are all high as well. Have doubled in the past year despite 10+ hrs. a weeks in the gym including heavy cardio and a low fat, high protein 1200-1100 calorie a day diet.
I have also tried to talk to both my Endo and Gyno about being on an estrogen-based Birth Control pill... neither believe it it's affecting anything.
T3, Free 5.8 pg/ML 2.0 - 4.4
T4, Free .96 ng/dL 0.82 - 1.77
Cortisol 18.3 ug/dL 2.3 - 19.4
Does this help?
My VLDL Cholesterol & Triglycerides are all high as well. Have doubled in the past year despite 10+ hrs. a weeks in the gym including heavy cardio and a low fat, high protein 1200-1100 calorie a day diet.
I have also tried to talk to both my Endo and Gyno about being on an estrogen-based Birth Control pill... neither believe it it's affecting anything.
Please post the reference ranges shown on the lab report for your Free T3 and Free T4 tests.
Thank you for the detailed information. I feel like I have a better understanding of Free T3 and T4 levels that my paid specialist does. I brought all these factors up to him this week and he basically told me I didn't know what I was talking about.
I'm going to read the article links you provided... I'll be back on the board over the weekend.
Thank you again!! -- Much appreciated!!
I'm going to read the article links you provided... I'll be back on the board over the weekend.
Thank you again!! -- Much appreciated!!
I expect that your symptoms are because your Free T3 and Free T4 are still too low in the range. To verify that, please post the reference ranges shown on the lab report.
Your doctor is saying you are hyperthyroid only because of your suppressed TSH level. Most doctors don't understand that TSH is frequently suppressed when taking adequate doses of thyroid meds. That does not mean you are hyper, unless you have hyper symptoms due to excessive levels of Free T3 and Free T4. If you think your doctor might be willing to consider scientific evidence that TSH is basically a useless test when a hypo patient is already taking thyroid med, then you can make a copy of my post in the following link, and also the links that I referenced.
http://www.medhelp.org/posts/Thyroid-Disorders/TSHsymptoms-not-numbers/show/2379736#post_11578547
I think that before even considering going to Mayo you and your doctor need to learn about clinical treatment, as in testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. You can get some good insight into clinical treatment from this link written by a good thyroid doctor. In the link note the statement, "TSH-suppression is a frequent result of adequate thyroid optimization and does not equal hyperthyroidism. Thyroid
dosing must be adjusted by symptoms and signs first, and by free hormone levels second."
http://www.hormonerestoration.com/Thyroid.html
By the way, my TSH has been about ,05 or less for well over 25 years without ever having hyper symptoms. And there are other members with similar experience.
Your doctor is saying you are hyperthyroid only because of your suppressed TSH level. Most doctors don't understand that TSH is frequently suppressed when taking adequate doses of thyroid meds. That does not mean you are hyper, unless you have hyper symptoms due to excessive levels of Free T3 and Free T4. If you think your doctor might be willing to consider scientific evidence that TSH is basically a useless test when a hypo patient is already taking thyroid med, then you can make a copy of my post in the following link, and also the links that I referenced.
http://www.medhelp.org/posts/Thyroid-Disorders/TSHsymptoms-not-numbers/show/2379736#post_11578547
I think that before even considering going to Mayo you and your doctor need to learn about clinical treatment, as in testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. You can get some good insight into clinical treatment from this link written by a good thyroid doctor. In the link note the statement, "TSH-suppression is a frequent result of adequate thyroid optimization and does not equal hyperthyroidism. Thyroid
dosing must be adjusted by symptoms and signs first, and by free hormone levels second."
http://www.hormonerestoration.com/Thyroid.html
By the way, my TSH has been about ,05 or less for well over 25 years without ever having hyper symptoms. And there are other members with similar experience.
Gimel... my apologies for the delayed reply. I finally got my doctor to put me on Armour Thyroid for the past 3 months. 90 mg a day. While I feel better than I have in two years, I'm still experiencing Hypo symptoms.... constipation, weight gain, ankle/leg swelling, etc. Labs done this week were as follow:
TSH... .203
T4, Free.. .96
T3, Free... 5.8
Vitamin D.... 57.8
B12 wasn't tested.
Ferritin lab is still pending.
My doctor is now telling my I'm hyperthyroid even though I feel better than I have in years. He wants to take me off of Armour Thyroid.
I'm also on Kariva 28 birth control pills. When I tried to come off of them last year, over 40% of my hair fell out.
Doctor is at a total loss... he's an Endo and basically told me he has NO idea why I'm gaining weight, still having symptoms.
The next step is to send me to Mayo... which he's supposed to do in the near future.
Anyone ever seen this before?
TSH... .203
T4, Free.. .96
T3, Free... 5.8
Vitamin D.... 57.8
B12 wasn't tested.
Ferritin lab is still pending.
My doctor is now telling my I'm hyperthyroid even though I feel better than I have in years. He wants to take me off of Armour Thyroid.
I'm also on Kariva 28 birth control pills. When I tried to come off of them last year, over 40% of my hair fell out.
Doctor is at a total loss... he's an Endo and basically told me he has NO idea why I'm gaining weight, still having symptoms.
The next step is to send me to Mayo... which he's supposed to do in the near future.
Anyone ever seen this before?
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