Aa
A quick hello but not so quick background :)
I am new to this message board and look forward to reading all of the great insight that everyone seems to have. I am a HORRIBLE patient!!! I am not even going to lie. However, my resolution to myself is to start doing the right thing.
Now here is the background. I was always very active. I am 5'9" and averaged 135-140 lbs. I have four children and have always gotten back down to pre-pregnancy weight. I was a strict vegetarian for four years (after child #3 and until end of pregnancy of child #4 because of difficult pregnancy and then went vegetarian again after delivery). I had been going to "lazy" doctors for 9 years minimum. I gained 60 lbs in three months when all of this started in 2001. The dentist (who I worked for) noticed that my neck appeared larger and pinkish in color. I started going to a doctor. They did an ultrasound and found three nodules. Afterwards, they did an uptake and scan. My doctor said that they weren't "hot" so she wanted to put me on 25mcg Synthroid. I was on that regimen for 6 months without any changes. I felt like I was the walking dead...a very fat walking dead, but walking dead, nonetheless. Feeling like she wasn't doing anything to help, I went to several other doctors over the following years and they all seemed like quacks too. I continued with random heart palpitations, depression, hair loss, mood swings (I was seriously angry A LOT), freezing during the summer and winter, always tired, aching joints, extreme memory loss (I could have the same conversation with you five times and not even remember talking to you), and continually gaining weight.One of my girlfriends suggested Iridology. I went to the Holistic doctor and she took pictures of my eyes. After all the explanations, she informed me that she thought it was an adrenal or pituitary issue. WELLLLL...to make a long story short...I ended up in the ER three days later with severe tremors (I couldn't write, button things, or feed myself with utensils) and my blood pressure and heart-rate so high that they decided to test me for methamphetamines because they thought that I was a druggie and was going to have a heart attack! After wasting precious time doing drug testing, they realized that I was not on drugs and then they proceeded to shoot me full of whatever so my heart rate would slow. After another 6 hours, they diagnosed me with Graves Disease and told me to find an endo so that I could discuss RAI or surgery. I went to go see the Endocrinolgist the next day and after looking at the results, she told me I had 24 hours to do some research and make a decision on RAI or surgery. Well, I took two days to do research because who can decide what to do that affects your whole life in one day?!?!?! I went with the RAI. She had me on every measurement of Synthroid and/or Levo over the next 2 years, from 80mcg to 225 mcg. Nothing seemed to work so I just fell off the radar and quit taking everything and quit going to doctors. I GAVE UP!!! Of course my symptoms started going crazy and so did I. After a few years without any treatments, my mother found a doctor for me that "knew what he was doing". So I made an appointment with him and have been seeing him for a year. I started on Tirosint 125mcg. My levels weren't changing (after three months) so he went to 150mcg. Still no change so we decided to try Synthroid. YUCK! I hated it and felt worse so we went back to Tirosint and up'd it 200mcg. LOL...sigh...here we go again! As of today, he just called in Tirosint 150mcg and Cytomel 5mcg (take twice a day for 10 mcg total daily). It has been a bumpy ride and this is the first time that I've reached out and sought support through a community like this. I promise that I am not always this wordy, but I figured that if I am going to do this, I wanted to lay it all out in the open :)
Thanks for allowing me to come and learn (and vent). I hope that I didn't bore you to death!
Now here is the background. I was always very active. I am 5'9" and averaged 135-140 lbs. I have four children and have always gotten back down to pre-pregnancy weight. I was a strict vegetarian for four years (after child #3 and until end of pregnancy of child #4 because of difficult pregnancy and then went vegetarian again after delivery). I had been going to "lazy" doctors for 9 years minimum. I gained 60 lbs in three months when all of this started in 2001. The dentist (who I worked for) noticed that my neck appeared larger and pinkish in color. I started going to a doctor. They did an ultrasound and found three nodules. Afterwards, they did an uptake and scan. My doctor said that they weren't "hot" so she wanted to put me on 25mcg Synthroid. I was on that regimen for 6 months without any changes. I felt like I was the walking dead...a very fat walking dead, but walking dead, nonetheless. Feeling like she wasn't doing anything to help, I went to several other doctors over the following years and they all seemed like quacks too. I continued with random heart palpitations, depression, hair loss, mood swings (I was seriously angry A LOT), freezing during the summer and winter, always tired, aching joints, extreme memory loss (I could have the same conversation with you five times and not even remember talking to you), and continually gaining weight.One of my girlfriends suggested Iridology. I went to the Holistic doctor and she took pictures of my eyes. After all the explanations, she informed me that she thought it was an adrenal or pituitary issue. WELLLLL...to make a long story short...I ended up in the ER three days later with severe tremors (I couldn't write, button things, or feed myself with utensils) and my blood pressure and heart-rate so high that they decided to test me for methamphetamines because they thought that I was a druggie and was going to have a heart attack! After wasting precious time doing drug testing, they realized that I was not on drugs and then they proceeded to shoot me full of whatever so my heart rate would slow. After another 6 hours, they diagnosed me with Graves Disease and told me to find an endo so that I could discuss RAI or surgery. I went to go see the Endocrinolgist the next day and after looking at the results, she told me I had 24 hours to do some research and make a decision on RAI or surgery. Well, I took two days to do research because who can decide what to do that affects your whole life in one day?!?!?! I went with the RAI. She had me on every measurement of Synthroid and/or Levo over the next 2 years, from 80mcg to 225 mcg. Nothing seemed to work so I just fell off the radar and quit taking everything and quit going to doctors. I GAVE UP!!! Of course my symptoms started going crazy and so did I. After a few years without any treatments, my mother found a doctor for me that "knew what he was doing". So I made an appointment with him and have been seeing him for a year. I started on Tirosint 125mcg. My levels weren't changing (after three months) so he went to 150mcg. Still no change so we decided to try Synthroid. YUCK! I hated it and felt worse so we went back to Tirosint and up'd it 200mcg. LOL...sigh...here we go again! As of today, he just called in Tirosint 150mcg and Cytomel 5mcg (take twice a day for 10 mcg total daily). It has been a bumpy ride and this is the first time that I've reached out and sought support through a community like this. I promise that I am not always this wordy, but I figured that if I am going to do this, I wanted to lay it all out in the open :)
Thanks for allowing me to come and learn (and vent). I hope that I didn't bore you to death!
COMMUNITY LEADER
Any doctor who is willing to give you a lab order can run necessary tests. Many times they get "lazy" and insist that symptoms are not related to the diseases they treat......
While you're at it, you might want to get vitamin B12 tested to see if you have pernicious anemia, which is another autoimmune disease, in which the stomach lacks a substance called intrinsic factor, which causes inability to absorb B12.
I don't know that you need to be tested annually for celiac, but if it's been 5 yrs, you might want to test again.
Most doctors don't do the 24 hr saliva test. You can ask your doctor about it and s/he doesn't do it, there are online sites from which you can purchase the kit. You do the test according to instructions, then send it back for analysis. Within a few days, you will have results that you can take to your doctor. Be aware that most doctors do only a one time cortisol test, which really does no good, because cortisol levels change throughout the day.
While you're at it, you might want to get vitamin B12 tested to see if you have pernicious anemia, which is another autoimmune disease, in which the stomach lacks a substance called intrinsic factor, which causes inability to absorb B12.
I don't know that you need to be tested annually for celiac, but if it's been 5 yrs, you might want to test again.
Most doctors don't do the 24 hr saliva test. You can ask your doctor about it and s/he doesn't do it, there are online sites from which you can purchase the kit. You do the test according to instructions, then send it back for analysis. Within a few days, you will have results that you can take to your doctor. Be aware that most doctors do only a one time cortisol test, which really does no good, because cortisol levels change throughout the day.
How do I do a 24hr saliva test for Cortisol? Is there a kit at the health food store or is it a doctor test? Thank you for your input!
goolarra- In the beginning, they did a bone density scan and a test for Celiac. Both came back "fine", however that was 5+ years ago. Should I ask to be re-tested every "x" amounts of months or years after negative results? Perhaps tested yearly for Celiac disease? Whois more knowledgeable or best equipped to test for Celiac? Endo? Gastro? Internal Med? I hate to sound so ignorant, but it seems that every doctor seems to point to another doctor and the left hand never knows what the right hand is doing. I try to keep everyone informed and give them each others tests results, but sometimes I feel like I am running into walls.
This has been such a long time. Adrenal fatigue may also be an issue. May want to do a 24 hr saliva test for Cortisol.
I'm glad to hear that he upped your meds after those labs and have to agree that if your levels aren't changing, no matter how much you take, then absorption looks to be the culprit.
In addition to Crohns, you might ask to be tested for celiac disease. That can cause absorption issues as well. Graves' and celiac are both autoimmune, and once you have one, you are more likely to have another.
What about food? Do you have a hard time absorbing nutrients, or is it just meds?
Have you ever tried taking your thyroid meds sublingually? When you do that, the meds are absorbed directly into the blood vessels under the tongue, thus avoiding any issues in the gut. You might ask your doctor about trying that.
In addition to Crohns, you might ask to be tested for celiac disease. That can cause absorption issues as well. Graves' and celiac are both autoimmune, and once you have one, you are more likely to have another.
What about food? Do you have a hard time absorbing nutrients, or is it just meds?
Have you ever tried taking your thyroid meds sublingually? When you do that, the meds are absorbed directly into the blood vessels under the tongue, thus avoiding any issues in the gut. You might ask your doctor about trying that.
He may have tested those other levels, but he sends me the "basics" via email. I will have to call the office tomorrow and see if my nurse has more information. He did up the meds after the Nov test from 150mcg to 200mcg. He thinks that I have a mal-absorption issue....Makes since because no drugs of any kind seem to affect me (Narcotics, Thyroid, etc). He did say that he wants me to see an gastroenterologist and get checked for Crohns (sp?) as well. At this point, I am going to do whatever they say because I feel pretty hopeless and defeated after all these years and feeling like I'm eternally stuck in square one.
Well, your labs are abyssmal...11/10/11 FT4 is below range, which indicates you need a major increase in your meds. Perhaps you also need Cytomel, but since he didn't test FT3, we really don't know. With FT4 that low, it's impossible to say whether you convert poorly and need Cytomel (T3) or not.
After the 11/10/11 labs, did your doctor suggest an increase? If he didn't, it sounds like you desperately need a new doctor. This guy isn't testing suficiently (no FT3), and TSH is way above range, and FT4 is way below.
Your doctor may have gotten it right giving you Cytomel in addition to Tirosint, but he was just guessing without testing FT3.
Perhaps you should contact gimel, one of our members who maintains a list of thyroid doctors recommended by members. He might be able to recommend someone in your area.
After the 11/10/11 labs, did your doctor suggest an increase? If he didn't, it sounds like you desperately need a new doctor. This guy isn't testing suficiently (no FT3), and TSH is way above range, and FT4 is way below.
Your doctor may have gotten it right giving you Cytomel in addition to Tirosint, but he was just guessing without testing FT3.
Perhaps you should contact gimel, one of our members who maintains a list of thyroid doctors recommended by members. He might be able to recommend someone in your area.
Btw..my doctor said that I seem to be wired backwards and that my case has been to the Endocrinology board several times. Not sure if that is a good thing or not...
These results are as of 07/10/11:
TSH 10.550 0.450 - 4.500 uIU/mL
T4,FREE(DIRECT) 0.89 0.82 - 1.77 ng/dL
These results were as of 11/10/11:
TSH 14.020 0.450 - 4.500 uIU/mL
T4,FREE(DIRECT) 0.67 0.82 - 1.77 ng/dL
Those are all the results that I have.I asked my doctor about Cytomel because my aunt visited me this week and she and I, apparently, are a lot alike. She went through all the same things that I did and we never really talked about it...until this weekend. However, my aunt did TT (a year ago) and I did RAI (7 years ago). My old doctor said that it took me two years for the RAI to kill off my thyroid and give her the results that she was looking for. UGH!!! Who knows what she wanted but I have been miserable ever since. I think that I moved way to fast without any knowledge because the doctors scared me to death and made it sound like I had a foot in the grave. So I hurried and made a mediocre uninformed decision and did RAI because the surgery scared me.
The symptoms have not changed. Not one bit. I eat Excedrin like candy because that is all that seems to help my headaches and eyes. Weight? Still large. Tremors? Mildly. Here and there. Mood swings? Jekyl and Hyde have nothing on me. Hair loss? Yep. I clog the shower drain after each shower. My husband asks if I wash our Husky (the breed...not the size) dog in our tub. Tired? I'm writing this while in my pajamas....in my bed :(
Anyways, back to the story. My aunt's doctor (in North Carolina) now has her on Synthroid 125mcg and Cytomel 25mcg. Nothing else worked for her until now. Sooooo, I called my doctor and told him what was happening with my aunt and asked if that could possibly help me. He figured that we could give it a shot. So we are trying. I go back to see him in two months so he wants me to try this regimen and get labs in mid February and we will go from there :)
TSH 10.550 0.450 - 4.500 uIU/mL
T4,FREE(DIRECT) 0.89 0.82 - 1.77 ng/dL
These results were as of 11/10/11:
TSH 14.020 0.450 - 4.500 uIU/mL
T4,FREE(DIRECT) 0.67 0.82 - 1.77 ng/dL
Those are all the results that I have.I asked my doctor about Cytomel because my aunt visited me this week and she and I, apparently, are a lot alike. She went through all the same things that I did and we never really talked about it...until this weekend. However, my aunt did TT (a year ago) and I did RAI (7 years ago). My old doctor said that it took me two years for the RAI to kill off my thyroid and give her the results that she was looking for. UGH!!! Who knows what she wanted but I have been miserable ever since. I think that I moved way to fast without any knowledge because the doctors scared me to death and made it sound like I had a foot in the grave. So I hurried and made a mediocre uninformed decision and did RAI because the surgery scared me.
The symptoms have not changed. Not one bit. I eat Excedrin like candy because that is all that seems to help my headaches and eyes. Weight? Still large. Tremors? Mildly. Here and there. Mood swings? Jekyl and Hyde have nothing on me. Hair loss? Yep. I clog the shower drain after each shower. My husband asks if I wash our Husky (the breed...not the size) dog in our tub. Tired? I'm writing this while in my pajamas....in my bed :(
Anyways, back to the story. My aunt's doctor (in North Carolina) now has her on Synthroid 125mcg and Cytomel 25mcg. Nothing else worked for her until now. Sooooo, I called my doctor and told him what was happening with my aunt and asked if that could possibly help me. He figured that we could give it a shot. So we are trying. I go back to see him in two months so he wants me to try this regimen and get labs in mid February and we will go from there :)
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Am I understanding correctly that your levels didn't change after 3 months on 125 mcg Tirosint? Do you take your meds properly...on an empty stomach, nothing else to eat or drink for half to one hor later, all other meds and supplements at least 4 hours away from thyroid meds? Which levels do you mean? TSH? FT3? FT4? What about symptoms? Did those change?