I Am Disappointed

I don't mean to be mean or rude to anyone here but I had joined this group for some support and looking for advice from others. I had posted a story and was very disappointed in the responses. It makes me sad that there is a group and not very much support. I was in a somewhat bad place when I was diagnosed because I was so confused and felt like no one understood what I was going through. I was looking for some kind of direction since I had no idea what to expect. The only response that I had gotten to my story until just recently was from someone who didn't even have Hashimoto's and although I am sure that she meant well, left me feeling worse that I had before. It is very hard to just "take a nap when you are tired" when you are working full time and taking care of two kids, and when you have time to lay down and sleep you are having such anxiety that you can't. I know two others have recently joined and wish them the best of luck on their journey to wellness. I have joined yahoo groups and they have been absolutely wonderful on support and information. I was so worried about possibly not being able to ever have more children due to starting on meds but have learned that is not true. It actually should be easier. Also was given advice on what foods to watch. I am going to see a specialist on March 10th and will hopefully get some answers. Obviously my thyroid is like myself and is a fighter. My mom told me that she had brought me to see the doctor when I was 12 because my thyroid was enlarged. Of course my levels then were normal so it was left as that. I am now 26 and my levels still are fluctuating very much. Hopefully they will kill off my thyroid so I can start treatment. I have such a hard time understanding why the response on here is so low when I have seen numerous comments on such meaningless stories as "I see life as a dream". I know that a lot of people have the view that "its just a thyroid" who cares, a lot of people have thyroid problems. Well a lot of people have cancer and no one would sweep them under the rug like that. I am in a much better place now and have a great outlook on my new life that I hopefully will be starting due to me going elsewhere for support.

amremmick amremmick
3 Responses Feb 11, 2009

I am sorry that you have not found support. I have just joined and came across your message and thought I would respond. I remember being so sick last year that I would ask my husband to research for me because I could not even sit at the computer for any length of time to figure out what was wrong with me. At that point I had already been to numerous specialists and the Mayo clinic. One rhematologist said I had fibromyalgia and another said that I had rx arthritis, or possible RA something that affected my immune system which was an infection and ran test which indicated I was positive for chlymadia pneuomia which I had never been treated for but I couldn't take the antibiotics because my stomach was so affected. Finally I insisted on going to an endocrinologist and that's when I found out my antibiodies were high but he did not want to tx. Went to the best ENT here and at least he said I didn't have throat cancer because my throat has been hurting and red for a long time. However he ran more tests to confirm that I had Hashimoto's but did not want to tx because my TSH was normal but then what is normal for someone may not be normal for another because you can run very low. So after reading the book called The Thyroid Solution (you can mostly likely check it out at the library) I went to see Dr. Arem in Houston I recommend that everyone who has a thyroid issue read his book because he runs the TRH test which checks the thyroid at the pituitary level and it is the old way of testing the thyroid before TSH but because of being time consuming and costly not many endocrinologist order this or even know how to read it. It is performed by injection with a hormone IV and then your blood has to be drawn every 15 min for one hour this is done in his office. He sends it out to lab and you receive the results the next day when you return to see him. I was clearly Hypothryoid with the TRH test and I had all the symptoms, muscle weakness, tirdness, aches and pains, hair falling out, inflammation, rash bumps on legs and arms, loss of concentration, sleep disturbances, GERD, I had burning and pain in back but I think that was due to the infection however I read in his book another woman who had the same symptoms and he calls it Euthryoid fibromyalgia. He also put me on a T3 (compounded)and T4 (Levoxyl) He determines on your symptoms and has now increased me after having some more blood work done eight weeks following the start of medication. I am on two antibiotics for six months which I can now take since my stomach is better and I think I am going to have a complete recovery, I feel so much better now then what I was. And I know I am still going to recover more. Also I have learned about other supplements that has helped my immune system which is totally amazing. My daughter is going through the same thing and I am now able to help her. I do think it was an infection that sets off the immune system ( Hashimoto's) I would llike to hear from others if they think the same. My daughter 23 yrs old has had several bouts of pneuomia and my massage therapist who has hashimoto's had previously had pneuomia. She had issues about getting her doctor to prescribe thyroid medication because her TSH was considered normal but she too did finally find one who did prescribe it for her. The other thought on infections being the causal effect I do know that when your immune system is weakened by the Hashimoto then you are more open to infections as well. So it is like which came first the chicken or the egg?? My very best to you in your recovery :) It truly will get better but pursue getting on thyroid medication before you destroy your thyroid. I was started on very low dose like a half of .025 mg of Levoxyl and 4 mcg of T4. Now increased up to 0.25 mg. Also I found a endocrinologist that listened to my daughter and put her on Armour for her thyroid even though her TSH was within the normal range but the endo stated that with her symptoms and that her TSH was 2.2 she would treat. Her mode of operatus is to treat thyroid when the TSH is above 2.0 with symptoms. So there are endocrinologists that will listen to you and your symptom and will treat. My daughter still has all the infections going on with her such as cough and congestion. I am looking at taking her to an infectious disease because it is hard to find a physician that will treat you long term for an infection. She has been treated several times for short periods but then it comes back. She was positive for mycoplasma pneumonia which she researched and stated it was tampered with and used in WWII as biological warfare to disable people which has infilitrate into the population. It causes aches and pains and burning in back which she had... Very interesting... Again my best to you

Don't worry the whole reason i joined this entire site was because i was looking for people to talk to about this... hashimoto controls my life.... i miss at least 3 days out of the school week due to the worst upset stomach from medications. I'm just looking for people to share my experiences and feelings with that feel the same way as me.

I'm sorry you feel so frustrated with your experience here. I am new to EP and just found your post. I was diagnosed with Hashimoto's disease more than 10 years ago. I honestly felt like I was slowly dying as I had absolutely no energy whatsoever, was depressed and was just plain miserable. One day, I just had to go home from work, I felt so bad. I got an appointment with my Dr. the same day, went to see him, described what I was feeling, he said "I think I know what's wrong with you," took some blood and by that afternoon was properly diagnosed with HD and started taking synthroid. After about 2 weeks, I started to feel better. It took a few dosages to make it therapeudic but it worked!<br />
So, I know you didn't want to hear my story when you have your own unresolved story but I think you should see another physician (and another, if you need to) until they get you the right treatment. If it means killing off your thyroid and then taking synthroid, so be it but I don't see why they haven't been started on some low level synthroid until they can decide what to do and make the dosage therapeudic! I'm no doctor, mind you. See if you can get an appointment sooner than March 10th. <br />
I sympathize with you. I remember how bad I felt and no nap in the world would make me feel better. I hope you're taking a multi vitamin and I hope you get the help you need and feel better soon. Don't stop going to physicians until you find one that makes you feel better! Oh. and if I forget for one day to take my synthroid, I can feel it! All the best. Please let me know how it goes for you.