To: "shari piczak" I am a 48 year old female. When I was 26 years old I was diagnosed with Graves Diseasse. I had RAI done. I was on 150 synthroid and then it 2007 it was uped to 200 synthroid. 3 years ago I went to my OBGYN in November and my thyroid was perfect. In December I had a trama. Within 24 hours my life changed. I was scared to leave the apartment, I was retaining fluid, I was unable to live. I went to the doctor who was unable to see me but the PA was. The PA advised I was not converting t4 to t3. She placed me on armour and wanted me to follow up with an endo. I went back to the endo that did my RAI. He advised me that was crazy and I better get back on the Synthroid. I continue to go down hill. I had a hard time seeing. I could not drive very far. I ended up with a serious rash all over my body. At this point the doctor hopping started. I was told that everything was in my head and then sent to a doctor who put me on lexapro and xanax. I have been off of that for 6 months. They made my condition worse. I went to another doctor 2 weeks ago. They ran blood work at this was my results.
TSH 12...6. 22 range 0.4- 4.5
T4 1.1 range 4.5- 12.0
T4 free 0.4 range 0.8-1.8
T3 free 0.6 range 2.3-4.2
T3 total <25 range 76-181
T3R <5 range 11-32
The doctor said she had never seen anything like this. She had my blood work from April where my tsh was 168. Att that time the doctor diagnosed me with myxedma madness. This doctor said to give her 24 to 48 hours and her nurse called me and just wanted to give me an endos name. I have been in 3 years to 15 doctors 4 of them being endos. So I hand delivered a letter to my OBGYN and he called and said he spoke with the endo they use and he would be able to help me. He got me an appointment for 230pm last Friday. I went and they said you are not on any medication right. I said yes I am on 1200 synthroid. He said well I cant help you, I though you were on no medication. He referred me to UT Southwestern. I came home and called them they will have to review my file first. and then will make appointment. October she said will be the earliest. He diagnosed me as thyroid resistance. I have tried everything. I have put my stuff on the thyroid boards on facebook, looking for any help and any answer. I understand they usually treat this with high levels of t4 and t3 and usually a beta blocker. I really need some help. I dont know if you can steer me in the right direction. I feel awful and to get thru everyday is really hard. I am finding it harder and harder to wake up when I fall asleep. I gasp for air during the night and have woke up biting my tounge. I have no support from my family. My kids and husband think I am making this up. Please help me if you can.
I don't see a resistance syndrome in your labs. Resistance syndromes show up as very high (often above range) levels of FT3 and FT4 with continuing hypo symptoms. Your FT3 and FT4 are extremely low.
Are you taking 200 mcg or 1200 mcg of Synthroid?
I looks to me like you're not absorbing meds properly. Do you have any known gut issues that might be affecting absorption?
Have you tried Tirosint? It's a gelcap and more readily absorbed than tablets. It's also hypoallergenic. Have you tried taking your meds sublingually (under the tongue)? Meds taken sublingually are absorbed directly into the blood vessels under the tongue, thus sidestepping any gut issues.
Assure your kids and husband for me that, with your levels, you feel absolutely horrible...I'm surprised you can get out of bed in the morning. We've all been there, so we know how bad it can get...
Good info for you from goolarra. I would only add something that I learned from a good thyroid doctor. It was advice given for a member in somewhat similar circumstances.
"The dose is irrelevant. Maybe she absorbs oral T4 poorly or she metabolizes it rapidly. It doesn't matter. She needs to be given whatever amount of oral levothyroxine it takes to 1.) eliminate signs and symptoms of hypothyroidism and probably 2.) to restore her FT4 and FT3 levels to around the numbers I've mentioned--or to a similar level within the laboratory's reference range."
Thank you fro the responses. I am taking 1200 synthyroid at this time. No doc will prescrip the new medication t4 medication. I dont think it could hurt. NIH is doing a study I am trying to get into that. No gut problems that I know of. I had the trama and the next day everything was different. Thank you again
Sandy lives in Dallas and shes going to see a really good internal med doctor here to first get all the proper labs done. seems shes never had anything like tpo, tgab, sonograms etc. I also gave her the name of a doctor that will give her tirosint if that is what it calls for. Im amazed at the fact her doctors will not even let her try this drug. amazing.
I'm amazed as well since there's nothing at all "new" about Tirosint, except the delivery system. It's exactly the same meds as any other levo.
Sandy, be sure to ask about taking your meds sublingually.
Do you have any indication that you are not absorbing other things, like nutrients, through your gut? Weight loss? Vitamin deficiencies despite a proper diet?
Yes, I agree that TPOab, TGab and a sonogram are all in order. In addition, I'd think about having antibody testing for celiac. I think the key is finding out what's going on in your gut because you seem to be absorbing almost none of your thyroid meds.
Thank you all for your comments. The last 2 days have been really hard for me. The trama was an attack. The only meds I take are synthroid. I have lost weight since April. In April my tsh was 166 the t4 and t3 were the same. I dont know why I keep getting passed around to doctors. I am trying to make it thru tonight to go to the doctor tomorrow afternoon. Tonight each bone in my body aches. My friend just called me back and said earlier I was really not making sense. I dont remember talking to her. I really have to focus on stuff. Thanks for any suggestions. I appreciate it.
I'm so sorry to hear that. Was your gut in any way hurt in the attack? Weight loss, especially since you are obviously very hypo, is a red flag that you have a gut issue. Be sure to be tested for celiac. Antibody testing is not always accurate when ir comes to celiac (although a positive is definitely a positive, a negative is inconclusive). If you test negative, an endoscopy and biopsy fo the small intestine is required to rule it out.
Also, don't forget to ask about taking meds sublingually (get a list together of what you want to ask).
Hang in there...best of luck with your doctor tomorrow...let us know how it goes.
It does sound like the stress caused by your trauma may have triggered an autoimmune problem like celiac. I'm sorry you are feeling so awful! I can remember how I felt when I crashed and was so hypo, but I'm sure it doesn't even compare to how you're feeling. I hope you got to see a dr today and they are willing to try Tirosint or something new. Good luck Sandy.....
We're all rooting for you!
Thanks to everyone. I was so sick on Friday, I could not take it anymore. I ended up in the ER room. When they tested my thyroid I was Hyper. My heart rate was way up. I was so out of it. I am in the hospitaly now and would appreciate anyone that has been thru this. I went from a ths of 126.22 to 0.04 in 2 weeks. My t4/t3s were low and now are on the high end. I have no clue of what is going on. Today all I had was an ultrasound of the thyrod to rule out cancer. That was ruled out.
Make sure they test your FREE T3 and FREE T4 as well as your TSH. Very, very important. Be sure to request FREE T3 and FREE T4, otherwise they will test total T3 and total T4, not nearly as useful. If you have FT3 and FT4 results, please post along with reference ranges from your own lab report.
How long have you been taking 1200 mcg of Synthroid? Are you absolutely sure that's what you've been taking? How many pills was that? Did your doctor advise you to take that much?
yes they are testing free t4 and free t3. I will post those when the nurse comes in and looks tnat up. I have been taking that dosage since the beginning of may. Yes I am sure that is the amount. No diet had changed. They are doing more testing on me this morning. Since yesterday very low bp and hr. Can only stay awake for a little white and then I have to go back to sleep.
I am back home still with no answers. The doctor said I was the talk of the hospital and no one can figure this out. I did talk him into the new medication for me to try. I will pick it up today the pharmacy had to order it in. A nurse gave me a name of an endo. She said he is wonderful, and he has great ratings on the net. My doctor is getting all my records from the hospital. He is going to fax everything to this doctor and see if he can help. Also still waiting to hear back from utsouthwestern. Thank you for your responses
Finding a good endocronologist is the first step to getting the proper treatment for hypothroidism and free T3 and free T4. 1200 micrograms of synthroid is outrageous. I have been taking 200 micrograms for the last 10 years or so. Most doctors, even endocronologist consider this to be a high amount. I was told by my last endo that most people would take no more than 150 micrograms of synthroid.
I've been hypothyroid for 26 years and have been having problems with minor fluctuations causing me to go hypo and then hyper. Anyone else having these issues??
I have appointment with an endo that the nurse gave me in the hospital. This is what happened to me I have been severe hypo and a week ago an endo said thyroid resistance when she looked at all my blood work from the year. In one week I ended up in the hospital severe hyper. They have no clue what is going on. I hope this guy has some answers for me tomorrow. I will update. I have been to so many docs, it is so hard to get excited anymore. Thank you for your help, I appreciate it
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