Hello everyone! Thought I would be a little selfish and post my progress.
Well after years trying to find out the source of allergy, skin, eye, weight, energy, memory, heart, and migraine issues... I had my mom share that she had Graves and Hashimoto's and a light went off.
So I fought to get my normal/slightly off thyroid tested for antibodies.. and DING! The adventure really started rolling.
Dominant Hashimoto's was determiend first.. with active Graves antibodies.. The MDs ignored Graves and stamped my file Hashimoto's Thyroiditis.. NORMAL.
Well in the last year I fought and found I had Hashimoto's and Graves. My thyroid antibodies were attacking my brain, heart, thyroid.. and my adrenal's kicked it too.
Well I got in with a good thyroid MD, FINALLY, this January. Now my Hashimoto's, Graves, primary adrenal insufficiency are being treated.
The low adrenal and thyroid function caused me to have low Ferritin, B12, and vit D. I also had high triglycerides, high AST/ALT and a few other issues with mineral balance.
SO the supplement flood began.
1) Fish oil 1200 mg with DHA and EPA once a day. (My triglycerides decreased by 35%)
2) A super B complex once daily. (Up to 45% in range now)
3) 400 mg Magnesium once daily for migraines and muscle issues. This and the B12 did help with my migraines.
4) Selenium and potassium iodide multivitamin
5) Ferrous Fumorate - iron supplement with vit C.
A summary of treating my thyroid and adrenal issues:
I started out on 50 mcgs of synthroid in January. This allowed my FT3 and FT4 levels to reach 72% and 30% respectively. At these levels I still felt hypoT.. but I was warm again. So given my T4 levels were still suboptimal, I was bumped to 75 mcgs of T4.
The discrepancy in T4 and T3 balance pointed my MFM and me to my adrenal issue. My MFM was concerned that this was going to make medicating my thyroid very difficult. So a new round of testing commenced after 6 weeks at 75 mcgs. This testing confirmed primary adrenal insufficiency. I was taken off the DHEA Sulfate and put on 20 mg hydrocortisone spread out through out the day. Meanwhile my 75 mcg blood work came back with me HYPERT. I had swung to 270% in T3 and 190% in T4. HyperT's.. I feel for you. So I was dropped back to 37.5 mcgs for 2 weeks and then returned to 50 mcgs of T4 and told to come back in 8 weeks. We were waiting to see if my cortisol supplementation would correct the T4/T3 imbalance and help with my thyroid supplementation issues.
After 8 weeks on 20 mg of cortisol and 50 mcgs of T4, my tests showed no significant improvement in thyroid hormone levels.. BUT I wasn't hyperT anymore. My T4 levels were at 10% and my T3 levels were at 50%. The good thing was my cortisol levels were all low normal in limit and my adrenal hormones all began to improve.
So once again it was another 8 week wait period. Last friday I had my lastest round of blood work. I was hoping for good things and I think things are beginning to turn about. I AM TRUELY HYPOTHYROID! YEAH! My TSH is still 0.4, but my FT4 is at 20% and my Ft3 is at.. DRUM ROLL.. 30% of normal range. *DANCES IN A CIRCLE* YES my FT3 and FT4 are with in 10% of each other.. balanced, but low. My Cortisol is now up from 30% of normal to 77.8% of normal. Near perfection. My ACTH is still high and TSH low.. but my pituitary gland is a dud. My cholesterol is down and Normal. My BP is down. My heart rate is staying down. My triglycerides have halved in value and are NORMAL! Sorry I have never had normal triglycerides! My calcium and all thos minerals are 40-80% of range so.. all is looking good. Now that the supplementation of cortisone has my T4 to T3 conversion in check and my antibodies have demolished another chunk of my thyroid heres to hoping I can successfully supplement my thyroid hormones since I am at the wait and hold on a TT.
So to make a long story short: I still have Hashimoto's and Graves running hard and steady, but Hashimoto's has hammered my thyroid into a very low yield state and is winning out over my Graves. My B12, DHEA, Ferritin are all in the 40-60% range of normal. My thyroid hormone levels are low but balanced, and I just got an go on another T4 increase. My nodule is an 8 mm sphere and holding. My adrenal supplementation is working and my neuropathy and hashimoto's encephalopathy are in check.
Next in line.. I go to see a thyroid/pituitary specialist at Vanderbilt August 7th. I go back for my thyroid eye disease check up next friday.. and I have to wait another 6 weeks at 75 mcgs to see if I am going to spike hyperT again.
So any bets? Your guess is as good as mine. My body just loves to go against the grain and give me issues.
All in all I am moving forward and think I am slowly making progress forward. You can not give up on yourself. You have to keep moving forward and sometimes the only way to go forward is to go backward. Fixing a thyroid problem is not easy. It takes persistance and a good thyroid team.. YOU and your MD.
Well I am wishing you all the best and am greatful that you all are here to share with and listen.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Well I am sharing my latest Labs and such.. :D
mg-
did they just ignore your grave's antibodies? This is what I am struggling so with now. I went back and looked at blood work from 2004 and I had the same sort of thing happen, with positive tpo's and tsi. Scratched their head then, but should have done something. Right now I too have postive AST and a high normal BUN. Probably thyroid related.
I have had a real hard time on meds, possibly adrenal issues, but also the postive TSI interfering with doseage. I don't know what else to do right now except take the meds and brace myself for the storm until the seas calm.
Mattie
Re: Well I am sharing my latest Labs and such.. :D
OTC - Rexall - Premium Fish Oil - 1200 mg - MADE IN THE U.S.A
720 mg Omega-3
EPA (Elcosapentaenoic Acid) - 432 mg
DHA (Docosahexaenoic Acid) - 288 mg
24 mg other Omegas
The bottle recommends two of these soft gels.. but it is too much. One is all my MD and I recommend. Two results in fish oil regurgitation.
Thank-you for asking how I am feeling! Since you did I will be honest. I am feeling positive and well considering my levels. I am far from perfect. I run down and get tired. I have the general complaints of hypoT, but these complaints are getting better. My mind is waking up. My energy is building. I wish it would build and peak quicker.. but optimization of medication takes time as any other thyroid veteran who has achieved it will tell you. I have my low days.. I have days I would love to sleep in and stay in bed or on the couch.. but my five year old will not let things rest.
I am glad that I can educate others with my trials and resources. I learn just as much from those that ask questions as you all learn from me. There is no dumb questions only bad attitudes. I wouldn't be a good teacher, if I refused to listen to others.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Well I am sharing my latest Labs and such.. :D
Quote:
Originally Posted by mattie75
mg-
did they just ignore your grave's antibodies? This is what I am struggling so with now. I went back and looked at blood work from 2004 and I had the same sort of thing happen, with positive tpo's and tsi. Scratched their head then, but should have done something. Right now I too have postive AST and a high normal BUN. Probably thyroid related.
I have had a real hard time on meds, possibly adrenal issues, but also the postive TSI interfering with doseage. I don't know what else to do right now except take the meds and brace myself for the storm until the seas calm.
Mattie
Yeah,
My Endo and other MDs ignored the Graves. I had the bright idea to go back when I was digging into Graves remission standards.. when you can get pulled off of Beta blockers and the like... Going by those standards I was positive for Graves and but not over whelmingly so...
My MDs saw Hashimoto's and antibody levels in the 1700's and blew off the 110 TSI. Well.. that is the way my old Endo bounced... out the door. So now I test my levels every 6-8 weeks and adjust my meds a bit in between according to symptoms. I am getting the hang of it. It isn't the best of life's.. but I am living AND I refuse to let my little gland kick my tail!
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Well I am sharing my latest Labs and such.. :D
Mkgbrook~
Thank you so much for telling us about your progress, it is very encouraging to see others finally find answers. You have helped me out a lot with your insights into the world of "thyroid dysfunction". I think that I am at my optimal levels on .112 Levothyroxine. My Free T4 & Free T3 were at 69% and 65% according to my last bloodwork. Anyway, I noticed that you said that your thyroid antibodies were attacking your heart, etc.. I have never heard of that before, how did you know that was happening? I have had vitiligo for about 15 years, not bad but it really flared up last summer when I also was having other bad hypoT symptoms. Could the thyroid antibodies be attacking my skin pigment? I have always wondered if there was an underlying problem, because it doesn't run in my family at all. I was just curious. Thanks again!
Re: Well I am sharing my latest Labs and such.. :D
MG-You do have a fighting spirit and it looks like you are getting a handle on what is going on. And, you really have been persistent and thorough--You really are an example of the Proactive Patient--KUDOS TO YOU!!!!! Knowledge is power---even if we do not like the situation at least to know and then to start working with it , helps alot.Your supplements sound alot like mine.
Keep us informed of how it goes.
My neck mass/mess is still a pretty unclear picture to me and I am waiting to see the surgeon at the univ. The endo and pcp are on line with the TT and say this surgeon will do----not like the endo who wanted to start with the lymph glands and one side, send to path and then see what they said while I was on the table. And, only take other side if malignancy found. But, I really won't know what is going on till I see this guy-so it is very up in the air. But--this waiting time is giving me time to gather more info.
My endo has said to me that it's not a 100% thing when they have you are on the table and send the lobe to path. That cancer can be missed. That was an eye opener---what do you think??
I connected with the local ThyCA support group -thyroid cancer survivors and wow that is a wealth of info. They connected me with several people who have used the docs I was thinking of using and also we compared notes on endos. One of the women told me that she too had heard that path done while you are on the table cannot be 100%-but she thought that it was not useful for certain variants of thy. ca. but she couldn't remember--like maybe not anaplastic or medullary the more serious ones, she said she thought those took several days. Well, do you know anything about this??
Re: Well I am sharing my latest Labs and such.. :D
Osteo,
I've read a lot too especially when my daughter was told she might have thyroid cancer in Jan. Apparently it is sometimes very difficult to tell the difference between follicular & papillary even under the microscope. There are other red flags that are factored in such as the look of the gland etc.
I can see why sometimes cancer can be missed on a hurry up operating room slide. Even experienced techs/pathologist can mess up.
My Ent did rule out the fast growing cancer you just mentioned because it grows so fast that I would already have begun to have symptoms etc by the time I saw him a month after the appointment was make.
Hope you get your answers soon. I keep checking my thyroid & lymph nodes everyday expecting to find something after having a ultrasound. But my aspirin has been keeping mine thyroid quiet for a few months. Fam
Re: Well I am sharing my latest Labs and such.. :D
Mg,
Thanks for your update & history. It is quite a lot to digest at once. Good thing you are able to toot your own horn & research. Think of the many patients unable to do any of those things because of illness or age etc. Glad you are on the up swing!!! Fam
Re: Well I am sharing my latest Labs and such.. :D
Not much time, but MKG, you are always so good to post for others, I wanted to post on yours! SO inspired by your wealth of knowledge and "I'm NOT giving up!" attitude. Grats that you seem to be on your way to a healthier you. I agree not to let some little butterfly gland take control of your life, lol!
Re: Well I am sharing my latest Labs and such.. :D
Wow MG that was some post you are a lovely person and i am pleased things are looking up for you, you have been up and down hill with your thyroid havent you,have you had times that you have wanted to give up when you feel you cant make docs understand whats going on or have you just kept pushing through all the way i feel im on a loosing streak at the min but i have to bounce back up to fight my gp for the last 4 months i have been haveing bouts of muscle pain and weakness in different parts of my body and cant walk they keep telling me ive pulled muscles but this is my 4 episode in 4 months it comes on like a light switch and goes off like one as well have you ever gone through that hunny, its so nice to hear your on the better side of this thyroid mess i wish you all the luck and love in the world you well deserve it love kassi xxx
Re: Well I am sharing my latest Labs and such.. :D
Hey, mg, glad to hear you're getting a handle on things. Who you seeing at vandy? Just curious cause I saw a dud there. Wouldn't wanna wish him on you. It was a long trip and a big waste of time to be told I'd been suffering from meno for the last 25 years just because my kidneys were acting the fool and had brought my hormones into normal range for the labs he ran.
On the fish oil, I take it three times a day to avoid the regurg. The max dose, 3,600mg day, and I too have seen an improvement in the lipid profile. My cholesterol actually went up. LDL's up to 171 but it brought my HDL up to almost 60. Whereas the endo wanted to put me on statins, the gp's happy with it. Says it's the HDL level that's important in women (not so much in men) and as long as I can keep it that high, I'll be fine without the risk of cholesterol horror and I've now got a lipid profile better than a lot of people with a lot lower cholesterol levels. Of course I crunched numbers and discovered he was correct but I've discovered that fish oil is a wonderful tool, as opposed to statins, etc., for bringing lipids in line. I think more docs should use it as a first line for fighting high cholesterol and see if it works before going immediately to some of the more powerful drugs.
Just had to comment and throw in my two cents. Glad you're feeling better.
Re: Well I am sharing my latest Labs and such.. :D
MG just had to come on and say its nice to know you are feeling better now than you did back then, I know that with this thyroid disease it affects us in so many ways.
I pray that you have many better days than bad...Mad Maz
Re: Well I am sharing my latest Labs and such.. :D
Access,
I wanted Blevins.. but he moved I got his replacement that trained under him.. Vipul Lakhani. General Endocrinology, Thyroid Cancer, Thyroid Nodules, Thyroid Ultrasound, Parathyroid/Calcium Disorders. So he isn't just diabetes. I figured it was worth a shot. Who did you see?
Kassi,
I haven't ever let an MD's opinion get me low enough to quit. MAD enough to chew and spit nails.. YES! I tend to deal aggressively to incompetence so if I have an MD with their head where the sun don't shine.. trying to smell daisies.. WELL I let them keep sniffing and move on. How is that for imagery? Don't let them get you down. When you know something is wrong keep after them til you find the jewel amongst the pebbles.
MAD,
Thanks for the well wishes. I hope that you and yours are doing well. How did all that antibody testing round out? I have been looking for your post on that.. but I may have missed it. We GET SO MANY posts a day. It is hard to take a week off.
GCC,
I have not taken sublingual B12. I am going for the super B complex that has ALL the B vits. I have looked at the sublingual technique and see it as valid. However my levels are holding with my regime.. so I do not want to alter it at this time. Thanks for the advice. I think it is great for anyone not being able to get their levels regulated by normal oral supplements.
I am not done with this thyroid adventure to say the least. I am SO tired these days, I would love to bump up too 100 mcgs.. but I do not think that is wise. Instead I will hang at the 75 mcgs and look at my levels in another 4-6 weeks. Now I have a goal. Gather, compile, and prepare for my Endo appointment. I hope he is not a dud. I prefer EnDOs to EnDON'ts.
As to today, I woke with a kink in my neck from Hades this morning. It has gotten worse as the day went on... five year olds using Mom as a jungle gym are not good for kink recovery. I still wake and have many other hypoT symptoms to deal with.. but my hyperT symptoms are GONE! YEAH! I finally had my first balanced FT3 and FT4 levels after a year of imbalance. I am hoping now I am just fighting on one front. Fighting both hypoT and hyperT sucks. If I get out of whack again.. I can deal with it, but I hope that is done now.
You all help me get through it every day. It is comforting to know we all share many problems and that we are not alone. Having to fight alone with this mess is the worst thing. The internet and boards like this are essential for those that need support and an outlet, but can not or will not burden their friends and family. So KUDOS to you all from me. Love you all like family!
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Well I am sharing my latest Labs and such.. :D
MG...I am so glad to hear that you are getting to the bottom of things and seeing some good results.
It gives me some hope that I may get myself straightened out some day too. I found out two months ago that I am hypoadrenal, but I've not had luck yet in finding a doctor to prescribe me HC. I have an appointment in a couple of months with a doctor who will, but at this rate I feel like I'll be dead by then. I know I won't, but there are days when it just really feels that way.
Anyway, just wanted to tell you that I'm happy for you. I've followed many of your posts and know that you have a lot of health struggles with you and your family (I've also seen some of your posts on the sleep disorder board as I'm trying to figure out why my daughter doesn't sleep) and yet you seem so upbeat and happy and handle things so well. I wish I could say that about myself. I swear I have a mental breakdown at least once a day over all this stuff.
I think you are great for helping all of us amidst your own struggles! Thanks!
Re: Well I am sharing my latest Labs and such.. :D
talbet,
I am not an MD. Nor am I making this recommendation as one... however if you have proof that you are hypoadrenal and your MDs are unwilling to write the script for HC then you can ask them if they would okay the OTC parent of HC for you. Ask what level of pregnenolone they would recommend to see you through until you get to the new MD. I know from reseach 10 mg of pregnenolone a day broken in half is what mos recommend if you can not tolerate HC. However I haven't had to take this route. If you call your MD and tell them you are going to take pregnenolone.. how much do they recommend? You should be able to get a good gauge on how well treating your adrenals will work out.. and work around hte unwillingness to prescribe HC. You body will convert the pregnenolone into HC and aldosterone as needed.
I wish you the best of luck with the hypoadrenalism. It took me 3 months for the HC to finally stablize my T4 to T3 conversion.. I am hoping that I am stable now. But only continued testing will tell.
I am sorry about your daughters sleep issues.
What medications is she on?
How old is she?
Is she just not sleeping or is she waking continually?
Does she snore or mouth breathe in her sleep?
Does she have her tonsils and adenoids still?
Does she sleep walk?
Wet the bed?
Wake rested?
Does she have more than 3-4 sinus/ear infections a year?
Allergies?
How is her concentration and ability to sit still and learn?
Behavior in general? Can she sit still with out getting drowsy?
There are many things that effect sleep. Medication side effects, sleep apnea and some 80 other sleep disorders, and endocrine issues.
Given your endocrine issues you have to get her tested to rule those out. My sleep specialist and pediatrician believe that my son (5 yr old) Should be tested for Hashimoto's and thyroid function at least once a year at this time. If your child doesn't develop thyroid issues shortly after birth, then puberty is the next main point that a person with AI forms of thyroid issues will activate. Now AITs can be triggered by certian illnesses.. but extended duration natural hormonal shifts and stresses are the main periods in which autoimmune thyroid issues activate. Puberty, pregnancy, and menopause. Hence females get more chances to suffer. However, I am assuming the sleep issues your DD is suffering from are long term and continuous. If her sleep hygiene is good and thyroid/adrenal levels are good.. then a sleep specialist is a must.
Sleep specialist see a lot of endocrine induced sleep disorders. Many are well versed in thyroid issues. My sleep specialist makes thyroid testing mandatory IF you haven't been tested already. He thinks I am genetic mess.. but has done well by me and my son. Now my husband has moved to him as well and he has the whole kit and kaboodle.
I have my periods of down. I try to limit them to crying in the shower. I do not want my issues to bring down my family if I can help it, so I focus on the good and just try and do one task at a time. My mom showed me you can suffer in silence, she and her sisters were experts. Now I do not let them. I however do not wait and suffer with out action. My hubby and son may be kept out of the loop, but my MDs will get a broad side if I need to let loose. If something is wrong, I am going to see it is found and treated. Thinking positive and writing down the bad in a journal has been quite helpful in maintaining my stress as well. I am wishing you and yours the best. If you answer those questions above on your DD I might be able to help you with where to go next.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Last edited by mkgbrook; 07-21-2008 at 05:57 AM.
Reason: typo!
Re: Well I am sharing my latest Labs and such.. :D
So glad to hear the update. I few posted back you posted something that had me wondering about repelling drs...but alas my head is not thinking enough to remember and to tired to look back through them. Since I am getting no where and not working or doing much else I thought it was a great time to go on a trip with DH. So I will be gone all next week. and will pick up where i left off when I get back. I have some good news too. THE PMS craziness seems to be gone but noticed I well up at nothing still...it just doesn't go full blown.
The best news in there for me IS you know where your at and you have shared so much I hope to someday share some great news with you.
SO inspired by your wealth of knowledge and "I'm NOT giving up!" attitude. Grats that you seem to be on your way to a healthier you. I agree not to let some little butterfly gland take control of your life, lol!
but it brought my HDL up to almost 60. Whereas the endo wanted to put me on statins, the gp's happy with it. Says it's the HDL level that's important in women (not so much in men) and as long as I can keep it that high, I'll be fine without the risk of cholesterol horror and I've now got a lipid profile better than a lot of people with a lot lower cholesterol levels. Of course I crunched numbers and discovered he was correct but I've discovered that fish oil is a wonderful tool, as opposed to statins, etc., for bringing lipids in line. I think more docs should use it as a first line for fighting high cholesterol and see if it works before going immediately to some of the more powerful drugs.
