[Anonymous]

#1075898

A couple of points about your issues:

1) It is extremely important when we have eye symptoms associated with the thyroid disease, that we see an opthamologist. If you do not like the one you were sent to initially, can you get a referral to another? If not, please try to put up with the one you’ve got, whether she is nice or not. The eye disease has serious adverse potential, and not just of the cosmetic kind. We patients worry most about the cosmetic changes, but there are other problems that are not cosmetic, and an opthamologist is going to pick up on them. Because we tend to be concerned about cosmetic issues that the doctors do NOT worry about, it can produce friction between us and our doctors. But, truly, you need the ophthamologist to watch your eyes for the serious, medically significant problems that sometimes occur.

2) There are complex issues which can interfere with the amount of medication we need at any given time. Thyroid cells might be wearing out, wearing down, and become less efficient at producing hormone. Antibody numbers (the antibodies cause the problem in the first place) change for no well-understood reason, and can either make things worse, or temporarily make things better. So, it can be necessary from time to time to change the dose of PTU (the shorthand way of referring to your propylthiouricil — however it is spelled). Once our doses are changed, it is important to wait a bit of time (and different doctors can vary on how much time to wait) at the dose so that the next blood test result can show how the dose change worked. This waiting time can be frustrating, especially if we think our symptoms are worsening, rather than improving. But without the wait time, we can yo-yo around with hormone levels and that isn’t good for us, either.

Bobbi — Online Facilitator

[Anonymous]

#1020064

I thought I would share with you my story.

It starts over 8 years ago when I went through a very traumatic time. I am not saying this was the trigger for all I know it could have been my bulimia too. Anyway I suffered a traumatic time and I started to get anxiety attacks. I fought with my family and knew I was being unreasonable. During this time I started blacking out. It got quite bad as I could do quite a bit of damage. One time I hit my head of the bath other times of the wall. I went to the doctor to find out what was wrong with me and he sent me for many tests. MRI, eeg, ecg, heart monitor, I was in the hospital for two weeks while they prodded and poked me. To diagnose stress….

So I took up yoga and learned to read the signs of a possible collapse and I would lie down no matter where I was. This meant I at least couldn’t do any more damage. I was also experiencing what I thought may be a very (at 22)early menopause. My periods were all over the place and some days my chest would go all red and hot. We used to melt ice on it because it was so hot. I used to take walks at night in the winter to cool down.

As it continued I got more and more upset. I was also going through some realisation regarding my sexuality and my mother brought me to the doctor and he prescribed anti-depressants. I was on them for over a year and then because of my sexuality I was kicked out of my house and that day I stopped my anti-depressants. I always believed I didn’t need them anyway. Which it became apparant I didn’t.

I then was sent on a second set of tests to discover what was causing my collapse… eeg, ecg, mri, the whole bloody lot. Of course again nothing was discovered. my heart and brain were fine.

Then I fell in love. I met someone who is my soulmate. we moved in together. I was so happy
Together we realised something was really wrong. I couldn’t carry the pot of water to the cooker without spilling it I was having really bad mood swings. It almost felt like I was being posessed by an evil spirit and I myself was screaming no don’t say what you are going to say… Then it happened. I have always been over weight but I started a new job and started to feel like I really couldn’t cope. I was drinking a lot of caffiene and I started to lose weight.

My partner and myself put it down to the new job but it kept going. If people said I looked great for losing weight I would snap at them becsause I knew that it didn’t make sense. After losing three stone in three months I realised that the had to be something wrong.

So I went to my doctor who actually didn’t recognise me I was so thin. He did a blood test for thyroid function and the results that usually come back in two weeks were back the next morning. He told me I had an overactive thyroid and that my blood was toxic. I was totally shocked. He started me on carbamazole and sent a letter of referal to get me an appointment with an endo. The appointment was six months away so I had a nice length of time to get used to the tablets. I also had a scan on my thyrod that revealed two goitres one on each side. These sometimes made me feel like my throat was congested.

My hair started to fall out, my legs were covered with welts and rashes. When I went to see the Endo my doctor had told me to drop down my tablets so she could see how bad I was without the tablets. My partner came with me and I explained my history the collapse the tremors the whole lot. She said that the collapse could have well been from the thyroid. My eyes were really sore and sometimes I was getting double vision. She asked me how I was getting on with the carbamazole and I told her. She decided to prescribe propylthiouracil instead.
My eyes were very bad so she sent me to tsee the optomologist. She wasn’t very nice so I don’t want to go back to her again.
Since then my Endo has gone on maternity leave and I have gained all 3 stone I had lost back.

I have tried to read all the books in Dublin on thyroid disease but I still feel very lonely as I have no one to talk to who actually understands what it is like. When I went back and discovered my Endo gone I was upset (its weird how you think people will be there) but the replacement dropped my dosage. I feel like it was the wrong thing to do because my symptoms are slowly coming back. I am restless, my legs are still all sore and rashy, the skin on my back and arms is very very dry and my hair is starting to thin again.

[Author]

Posts