Help please!
Janette3x4
Posts: 135
My lovely GP won't call me back. I have called all week and since this is a short week I know he won't call now until Monday if I am lucky.
Google confuses me.
I had RAI for graves in March. Since then my TSH and T4 (free) levels have plummeted.
TSH is .04
T4 free is .40
He will not check my T3.
I feel hypo. Am I? Any insight will help!
Thank you!
????Happy????4th!????
Google confuses me.
I had RAI for graves in March. Since then my TSH and T4 (free) levels have plummeted.
TSH is .04
T4 free is .40
He will not check my T3.
I feel hypo. Am I? Any insight will help!
Thank you!
????Happy????4th!????
0
Replies
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Really? No one? Guess you all have the same problem. Lol.
This problem must be very complex because finding an answer anywhere is impossible!
At least with effort I am losing weight that's a good thing. Just feeling crappy! ????0 -
Get a referral to an endocrinologist. A good one will adjust your meds based on both your levels (T3, T4 & TSH) and your symptoms.0
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Thanks. I have been looking for one. My GP thinks because he consults with one I don't need one, so I will also be looking for a new GP. I just wondered if anyone could decipher #'s.0
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You should definitely seek out an endo. Good luck!0
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I am not a doctor, I just grill mine for all the information I can get. I have hypothyroid, I was told that my tsh needed to be under 2 to feel ok and be able to lose as close to normally as I was gonna get with this condition (long term, mom had it). They got my TSH down below 2, over 9 months, to a wonderful 1.75 and I feel much much better. I know folks that have the opposite issue with thyroid have different goal ranges than those with hypo from my questions I ask.
I dont know too much about the low end of the range because I haven't been there. I have learned so much to help myself by asking my doctors for answers that cut through mullarky. I suggest you ask him/her questions about it and if your phone calls are left unanswered and you are local, go there and request a follow-up appointment or to maybe speak with the physician they consult with.0 -
Thanks! I will be looking for an Endo that my ins.takes this week. My T4 went down after RAI from 5.60 to current .40
I don't know if this is good or not! Thank you everyone for your replies! I sure do FEEL hypo and have a lot of the symptoms. My GP diagnoses by #'s only. ????0 -
Your numbers are a bit confusing to me as your tsh almost seems hyper while the t4 seems hypo but I am no expert by any means. I am now borderline hypo tsh 3.6,was 4.3. I feel fine and have been losing slowly through diligent tracking. I just came off a bout of hyper from thyroiditis. Not fun. Good luck and find a good endo. My gp wouldn't even begin to treat me when I was hyper she said it was out of her area of expertise. My endo has been awesome and I feel like I am in very good and knowledgeable hands. Good luck!0
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That is exactly what is driving me crazy. I was hyper for years. Then I had radioactive iodine treatment. My TSH has fluctuated very little, but my T4 (free) has plummeted. I wouldn't even worry about it except for the symptoms that I have. I know my doctor is just looking at my TSH levels. Hopefully. an Endo will listen to how I feel and not just look at my THS level
Thanks!0 -
Good luck! Keep us posted.0
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It sounds like you need a med adjustment. And do find a good endo....some doctors just don't get it. They should be testing your t3, t4, and tsh levels every time they test.0
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I am not on meds yet annie. I used to be very hyper thyroid. Amazing how we can put on weight being hyper or hypo right?
I will for sure keep you posted!0 -
My lovely GP won't call me back. I have called all week and since this is a short week I know he won't call now until Monday if I am lucky.
Google confuses me.
I had RAI for graves in March. Since then my TSH and T4 (free) levels have plummeted.
TSH is .04
T4 free is .40
He will not check my T3.
I feel hypo. Am I? Any insight will help!
Thank you!
????Happy????4th!????
I know why your T4 has plummeted, that is normal with the radioactive iodine.
I am not sure about the TSH, with Graves your TSH should have been low or even zero to start and than should slowly go up as your body uses up the excess T3 and T4.0 -
This is something that many, many people go through after RAI. It is going to be a battle for you until you find a doctor that knows what they are doing. Your TSH will stay low for years, maybe forever, when you have Graves because of the antibodies. That's not to say it can't rise but antibodies supress TSH levels. The problem with this is that most doctors dose off of the TSH and it's just not accurate in your case.
You need to be monitored by the FT3 and FT4 levels. This is the only real indicator of your thyroid status. I would find it really hard to believe that you don't need to be on meds. You may be able to go for some time on T4 meds (Synthroid, etc) but eventually you will need T3 (Cytomel, etc) also.
There are a couple of good resources to check out and educate yourself. I hate to say it, but if you don't you may end up feeling really miserable. Doctors in general are horrible at dosing. There is a website run by Elaine Moore. Just google her name. She had RAI and really regrets it because it made a huge impact on her life. She has lots of info (and books) on her website and a forum that only she replies to. If you write in with your info, she will post back in a few days what she thinks you need to do. She is excellent at advising on levels and meds.
The other one is llivingwithgravesdisease.com. This one is a community forum (like here) with lots of great info and links about RAI and Graves. Anyone can post so you have to take the advice with a grain of salt, but there are a lot of really knowledgeable people on there.
I hope this helps! I don't have Graves, but I was hyperthyroid for 8 months due to an infection in my thyroid. Now I am hypo and on Synthroid. I have to battle my doctor every time I go and I still don't feel well. It is an uphill batlle!0 -
Gdtaf.org is another good resource. But as the previous poster said take some of the advice with a grain of salt. I had a thyroid biopsy last week and had read many stories about how horrible it was and what pain it caused. It didn't hurt me at all. Everyone's journey is different. The only real advice I can give you is find a good doc
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Thanks so much for the replies, I truly appreciate the time you took to write! I am having a hard time finding an Endo, there are none at all in my area! Bombay and noves- I will definitely try those sites! ✌0
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Hi everyone and happy Thursday!
Update- I was prescribed synthroid today! I had really hit a low point! I never knew that hypothyroidism could be so very awful!!! I had heard stories, but until you live it, you cannot know how it feels. There is a reason there is a label "hypo hell". My heart goes out to all who suffer. It will be a week or so until I actually feel some relief but just knowing I am on my way to replacing important hormones helps me mentally. Thanks to all who replied and helped me out! ✌0
