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Hello – Hopefully, you will get some other responses, but when you mention "normal thyroid levels", are you having Free T4 and T3 tested as well? Normally, TSH testing is fine for patients who are stable and who are not experiencing problematic symptoms. However, since you aren’t feeling well, it’s certainly worth adding the T3/T4 testing, just to see if you can identify any red flags.
Also, keep in mind that the "normal" range for these levels is fairly wide — some patients find that they feel better in a certain spot in the range.
Finally, if you can completely rule out thyroid issues as a cause, hopefully, you have a doctor who will keep working with you to fit the puzzle pieces together until you *do* get to the root cause of your symptoms. You *deserve* to feel well again!
Hi
I am writing from England and it is very late here so I will be brief and I will write again tomorrow but yes I identify! I also have hashimotos disease, hashitoxicosis, serious inflammation in the gland itself as well as wonky thyroid hormone levels. This meant I was turning up normal results and feeling INSANE. Incompetent doctors were also telling me that it was all in my mind.
Please do not lose heart. It sounds like a proper screen of your antibodies, and scans etc are needed if they have not been done already. I’ve also just had all my sex hormones checked and they are connected, mine are low, which creates havoc with my monthy cycle (I am not quite 40 so not yet at peri-menopause).
I have a (very long!!) thread called ‘what to ask surgeon re thyroidectomy’ but the earlier posts, when I first sought a second opinion might help you. Please feel free to ask any questions – on the board or by PM.
You are not crazy. I’d spent years in therapy being told I had panic and anxiety disorder. All rubbish, there’s nothing wrong with me apart from thyroid illness!!! Also my surgeon told me that there is a massive link with autoimmune gut problems and GD / Hashis – they’ve mapped the genome and the weak spots are the same for both. You therefore may well have a proper autoimmune gut issue like coeliacs or Crohns, or a food intolerance or absorption issue (your doctor should also be checking your calcium, vit D, B vits, ferritin as well as gut antibodies).
I hope that helps. If you have an inflamed and toxic thryoid, as I did, then it wont’ really matter what your blood results say, 70% of your symptoms will be from the gland itself. I’d been ill for so long that my thyroid was destroyed beyond repair.
More tomorrow,
Best wishes
Rebecca
I was treated for Graves disease in September 2001. Currently I am taking two anxiety medicines (Lexapro and Wellbutrin) and treatment for IBS. The side effects of no sex drive, forgetfulness, and extreme fatigue are taking its toll. I am paramenopausal at 43 years old but these above symptoms are not associated with this. I ran into a former student (13years younger) who also had Graves with radiation treatment. As she shared her story, she spoke of suffering from extreme anxiety and IBS. We both had the very same symptoms with normal thyroid levels. Neither of our doctors have real answers for us. Has anyone else experienced these symptoms and found something or someone to treat this without all these meds that don’t really work anyway. I’m really at my wits end.
Thank you so much for your input. I will do my best to get my Dr. to listen. With America’s system of fee for services, I hope I can get him to listen long enough to come up with a solution that fixes the problem and not just the symptoms. I will let you know what happens.
I do not have IBS but I have gastroparesis and GERD. My gastroenterologist said that while the thyroid is out of whack (particularly when hypO), the GI system bears the brunt.
The only relief I found for the gp is domperidone (a Canadian drug) 30 minutes before meals, and 40mg twice a day of omeprazole (similar to generic Prilosec) for the GERD. I am still on beta blockers for the racing heart, and Synthroid. I HATE having to take four prescriptions a day (plus my birth control, a multivitamin and selenium supplements for my TED), but my gastroenterologist thinks that once I get settled on the ideal Synthroid dosage, my GI system will settle down shortly thereafter. I never had GI problems until I went hypo after RAI. Even though I was only hypo for probably 2-3 weeks (in August 2011), I am still struggling with GI issues and still feeling hypER.
Do you mind me asking which treatment you chose?
Dear gatorgirly,
To treat my graves I chose the radiactive iodine. Understanding nuclear reactions (physics degree), I feel this was the best treatment for me. Now 10 years later, I do believe that all my symptoms are the result of my under active thyroid. I take 125 mg levoxyl (name brand) for my thyroid, 20 mg Lexapro and 150 mg BuPROion for anxiety, and 8 mg Amitiza for IBS. I still feel miserable. I now see my primary physician ever since my endocrinologist released me. My testosterone levels all my life have been just at the lowest end of normal. Doctors were concerned when I was in my twenties but now that I’m in my forties and it is normal for women my age to not have a sex drive, I’m supposed to grin and bare it. I now jump every time my husband touches me and it is not that I don’t love my husband or not find him attractive. Anxiety makes it difficult to get tasks done, remember things, make decisions, and do my job. I am a high school teacher and it takes so much energy to stay enthusiastic for my students that I am so exhausted when I get home and so over stimulated. This is why I think I am so jumpy when I get home. I need to make an appointment with my doctor but I am dreading the conversation that this is all in my head and regarding the sex drive, nothing can be done. I’m hoping now that I found this organization, I will be able to go in with some real facts to offset the status quo.As you know, we are fellow patients here. The title of your post reflects some of my thoughts. REmembering that I am not a doc. My questions.
Have you considered discontinuing the anxiety meds and the GI med? I think you can achieve the same thing for GI by trying Mirilax (over the counter.) And for your GI situation, the best doc to see is a gastroenterologist who is familiar with IBS. There is so much misinformation out there re IBS. I have it, and all is controlled nicely with Miralax, plus remembering to drink water. I have a friend who just spent $10K going to some special IBS clinic, accomplished nothing, felt worse. Then went to an academic center with a GI doc familiar witH IBS, and he prescribed the same thing I do.If you feel you are hypothyroid, a good set of labs, would be another clue alongh with how you feel. TSH, T3 and T4. Do you consistently take your thyroid hormone on an empty stomach at pretty much the same time every day, with no supplements for 4 hours/ that is important.
Re sex drive, I can assure that there are tons of women who feel the same way. Maybe an appt. with a gyn person might be helpful. There are estrogen patches and creams, you could talk about that. I know my neighbors say the same thing, without thyroid issues.
But the first thing is for you to do is get labs if you haven’t (sounds like you have, though, and it is frustrating to you that you feel like you do with normal labs. The second thing to do is to discuss the other meds you are taking, ask yourself if they are helping, it doesn’t sound like they are, and i have no idea, maybe you do, of how they interact with each other,
and consider (working with your doctor) discontinuing all of them. Just a
i am sorry, you will have to slug through this, for the darn cursor will NOT move to the end of the line, sorry again shirley thought. might -
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