Aa
Aa
A
A
A
Close
Avatar universal

Desperately Need Help and Advice for Graves

Dear Dr Lupo,
I am hoping you can can shed some light on my Thyroid situation as I feel so terrible emotionally and pshychologically and at times am just holding on. I was diagnosed with Graves Disease in 1999 ( I think I had had it for years). I had a small goiter at the time and a "hot" thyroid. No nodules I dont think. Had all classic symptoms; hair loss, fast pulse (160bpm resting), extremely hot, tremors, bulging eyes, headaches, illness, hyper but then fatigued. To cut a long story short was treated with Carbinazole for 5 years on and off in varying dosages. They did not treat with RAI as I was planning to have children. It did stabilise twice in that time where I actually felt well, but there were other times when the Endos told me I was euthyroid and I felt absolutely awful. In 2005 felt very bad again and my labs were  T4 13.8 (10.5 to 24.5), T3 wasnt taken and TSH 0.8 (0.3 to 4.0). Was mortified when Endo said they were normal and that all my symptoms were anxiety and depression. Admittedly there were some underlying issues I was dealing with. So I went to see a Dr Skinner who felt clinically I was showing Hypothyroid symptoms and prescribed 25mcg of THyroxine. After three weeks I felt amazing, happy and back to my normal self. Didnt even go back for checkups as I felt so well. This continued for over two years. Although did develop bulging left eye and was very, very hot all the time but felt relaxed, calm and normal. Then last April my GP saw my eye and stopped the Thyroxine . Labs then were T4 35.2 and TSH 0.02. Crashed dreadfully and after few months fell into severe depression and anxiety state even had OCD. Dr Skinner started me back on Thyroxine but it has not helped. In Sept went on Anti depressants, beta blockers and Diazepam. Its now April, one year later and I feel suicidal. Im not on any meds at all now current Labs are T4 16.3, T3 1.80, TSH 0.02, Autoantibodies 364 ( 0 to 49). What happening to me
Lauren in London

4 Responses
Sort by: Helpful Oldest Newest
97953 tn?1440865392
MEDICAL PROFESSIONAL
"Its now April, one year later and I feel suicidal. Im not on any meds at all now current Labs are T4 16.3, T3 1.80, TSH 0.02, Autoantibodies 364 ( 0 to 49). "

These show hyperthyroidism -- Graves will have TPO antibodies as well.  Looks like a Graves recurrence -- would not call this hashimoto's as hashi is a chronic thyroiditis (w/ TPO antibodies) that causes a consistent HYPOthyroidism (ie high TSH).

Helpful - 0
Avatar universal
Thanks for your prompt response. Do you really think its a recurrence of Graves??? Is that because of the lab tests I have tol you about. So, why oh why then did I feel so well 2 and a half years ago when my t4 was very very high and my tsh low. It was only when they took me off the Thyroxine that I started feeling awful again. I dont understand. Im not on any meds now and feel dreadful. As I said Im seeing the Endo on Wed. Am hanging in there. Feel so bad with anxiety can hardly work. Just gone back on Celexa and having terribel side effects. I dont smoke and my eyes at the moment are fine. But will obviously discuss this with the Endo. Im just so shocked my the severity of the emotional and mental effects on how Im feeling. Is this normal with my lab results? Plus coudl you explain the relevance of the autoantibodies...... How would I know if its indeed Graves or Hashis? Also so you think I may have Hashitoxocosis? Please help!!!! Thanks soooooo much for you time. I realise you must be very busy.
Lauren in London
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
You now have a recurrence of Graves.  Would not restart levothyroxine at this point - would resume carbimazole and/or consider other options of RAI or surgery.  You also have thyroid eye disease.  If you smoke, stop now as this worsens it.  Have an eye doctor exam you to make sure there is not damage to the optic nerve.  With the eye involvement, would be reluctant to treat with I-131 (RAI) until that is very stable.
Helpful - 0
Avatar universal
My name is Linda in Colorado, U.S.A.  I have had Graves Disease, which is a hyperthyroid (overactive) thyroid, and while I'm not a doctor, it seems apparent to me you are being treated for hypo - thyroidism (an underactive thyroid) because they are treating you with Thyroxine, which is to treat a hypothyroid.  ARe they treating you currently for hypothyroidism instead of hyperthyroid?  With a TSH of 0.02 (which I had at one time) this shows your thyroid is hyperactive, overproducing the T-3 and T-4 hormones, which has an inverse relationship to TSH  (Thyroid Stimulating Hormone).  The normal ranges for TSH are 0.4 to 5.0.  Standard medicine treatment to bring your levels into the normal range are Tapazol or PTU (Propylthiosracil).. I hadn't heard of Carbazinol, but maybe that is used in London.  

Your current lab result definite look hyperthyroid to me, as do your symptoms, so check back with an Endo doctor again.  If your symptoms have returned after medicinal treatment, my doctor recommends Radioactive Iodine treatment.

Helpful - 0

You are reading content posted in the Thyroid Cancer / Nodules & Hyperthyroidism Forum

Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.