Newly diagnosed hyperthyroid

[sarah_r]

Hello there,

I'm Sarah, I'm 25 and have been sick this year. I was diagnosed in May with anxiety and depression after having several weeks of being unable to get out of bed and feeling awful. My treatment for depression went fairly well but took time. I quit my job in May also because I knew I was too unwell to return.

5 weeks ago I went to the doctor because of ongoing fatigue and losing about 1kg a week. She tested my thyroid and found it was overactive. I saw a specialist a month ago, he put me on Carbimazole & said it should calm things down, he suspected I had Graves. Today I went back and nothing has changed. I'm a bit disheartened & would like my life back.

I have been on the couch alot of the last month feeling awful & dealing with palpitations, anxiety & ofcourse fatigue. I've felt worse in the last month than I have in many months.

The specialist says that he'll reccomend a scan of my thyroid if things don't improve in the next month.

Can anyone share their stories or had something similar?

I really dislike the weightloss and wish I could maintain weight as I've lost so much already. I want to see an end to this!

Would love to hear from you.

[Andros]

Hello there,

I'm Sarah, I'm 25 and have been sick this year. I was diagnosed in May with anxiety and depression after having several weeks of being unable to get out of bed and feeling awful. My treatment for depression went fairly well but took time. I quit my job in May also because I knew I was too unwell to return.

5 weeks ago I went to the doctor because of ongoing fatigue and losing about 1kg a week. She tested my thyroid and found it was overactive. I saw a specialist a month ago, he put me on Carbimazole & said it should calm things down, he suspected I had Graves. Today I went back and nothing has changed. I'm a bit disheartened & would like my life back.

I have been on the couch alot of the last month feeling awful & dealing with palpitations, anxiety & ofcourse fatigue. I've felt worse in the last month than I have in many months.

The specialist says that he'll reccomend a scan of my thyroid if things don't improve in the next month.

Can anyone share their stories or had something similar?

I really dislike the weightloss and wish I could maintain weight as I've lost so much already. I want to see an end to this!

Would love to hear from you.

Hi, Sarah! You sure sound ill!! Sounds to me like you are dealing with the medical system in England or Scotland??

You most definitely need to push for a radioactive uptake scan because you need to be sure you don't have cancer. It would seem that we are often seeing (far too often) that cancer and hyperthyroid are bed mates.

Have you had any labs at all and if so, do you have copies so you can share results and ranges w/ us??

[lavender]

Hi Sarah! Sorry you feel so bad. I can definitely relate. It's so frustrating to have to wait for tests/doctors while you feel so bad!
I was sick for a long time with Graves. I was put on methimazole, a different anti-thyroid med, and still felt sick for months while taking it. My doctor seemed to think things should have gotten better while I was on the meds, but they didn't. He encouraged me to wait and see, but I wanted my life back. I was out of work on disability for 4 months, until they fired me. I pushed my doctor to have my thyroid removed, and have felt much better since. I have my life back, and you can get yours too.
It may help to put into perspective that Graves affects us not only physically, but mentally as well. I had really bad anxiety, rage, and emotional swings with Graves. I could not remember anything and felt like I was living in a fog, completely detached from reality. Knowing what was causing it helped me remember I was not crazy. Since surgery, I feel like a normal emotionally balanced person for the first time in my life!
It's a good idea to have the Radioactive Iodine Uptake Scan to rule out the possibility of cancer.

[sarah_r]

Thank you for your responses. I have had all my tests done and my specialist doesn't appear concerned about cancer at all, he said the scan may show a benign tumour. My red and white blood count is normal. I don't know exactly what my T3 and T4 are. Somewhere around 14 I think? About double the top of the normal range.

I am in Australia...

I am very keen to be well, the Specialist & GP want to give me another month on a higher dose of Carbimazole to see what happens, then they'll do the scan. Who would of thought thyroid disease was so complicated? They did make it sound pretty simple at first. The more I hear from ppl who have experienced it the less simple it sounds!

I do appreciate your advice very much, thank you!

Oh and also, the indicator for Graves disease is not showing in my blood, specialist said that this is the case in 1 in 5 women, he got me to go to a different patholoy service and have it checked again today.

[Andros]

Thank you for your responses. I have had all my tests done and my specialist doesn't appear concerned about cancer at all, he said the scan may show a benign tumour. My red and white blood count is normal. I don't know exactly what my T3 and T4 are. Somewhere around 14 I think? About double the top of the normal range.

I am in Australia...

I am very keen to be well, the Specialist & GP want to give me another month on a higher dose of Carbimazole to see what happens, then they'll do the scan. Who would of thought thyroid disease was so complicated? They did make it sound pretty simple at first. The more I hear from ppl who have experienced it the less simple it sounds!

I do appreciate your advice very much, thank you!

Oh and also, the indicator for Graves disease is not showing in my blood, specialist said that this is the case in 1 in 5 women, he got me to go to a different patholoy service and have it checked again today.

What is the indicator for Graves' Disease? Could you please share that with us?

I do think that is fair enough on the RAIU (radioactive uptake scan) and I hope you hold the doctor to that.

How are you feeling on the Carbimazole and what is your dosage amount per day?

Your parents and others who are important in your life may wish to read this...........

http://www.ngdf.org/cms/modules/files/uploads/7699.PDF

[sarah_r]

I was on 25mg per day, i have now been increased to 55mg. I don't know exactly how I feel on it, I don't think so great, it's hard to tell what the difference is between thyroid symptoms and possible side effects of the carbimazole. Sometimes I feel some nausea. I had headaches and felt awful when I first started taking it. But the other factor is that I'd just been diagnosed and hadn't been resting up until then, so I had been exacerbating my condition. I had palpitations for the first 2 weeks of treatment, they have calmed down now thank goodness. Yesterday was my first day on the increased dose of Carb. I am uncertain what the indicator is....it's this tiredness and unclear head, I am just not retaining information as I would usually. I will try to find out & update here if I can. He told me that there is a particular thing in the blood that is present in people with Graves...the indicator has the word thyroid in it. It's not T3, T4 or TSH...

I am back home with my parents for another little while, until I am feeling better. Having them do dinner and my washing helps so much. Spending the wkend at my own home and having to fend for myself took alot out of me. I notice that if I do too much (which is really not alot) I can end up very fatigued but also very emotional and teary. Can anyone share their experience of dealing with the emotional/mental side of things?

Thanks again for responding to me, it means alot to share with others as I have not yet spoken with someone else who is going through this or has gone through it recently.

[Andros]

I was on 25mg per day, i have now been increased to 55mg. I don't know exactly how I feel on it, I don't think so great, it's hard to tell what the difference is between thyroid symptoms and possible side effects of the carbimazole. Sometimes I feel some nausea. I had headaches and felt awful when I first started taking it. But the other factor is that I'd just been diagnosed and hadn't been resting up until then, so I had been exacerbating my condition. I had palpitations for the first 2 weeks of treatment, they have calmed down now thank goodness. Yesterday was my first day on the increased dose of Carb. I am uncertain what the indicator is....it's this tiredness and unclear head, I am just not retaining information as I would usually. I will try to find out & update here if I can. He told me that there is a particular thing in the blood that is present in people with Graves...the indicator has the word thyroid in it. It's not T3, T4 or TSH...

I am back home with my parents for another little while, until I am feeling better. Having them do dinner and my washing helps so much. Spending the wkend at my own home and having to fend for myself took alot out of me. I notice that if I do too much (which is really not alot) I can end up very fatigued but also very emotional and teary. Can anyone share their experience of dealing with the emotional/mental side of things?

Thanks again for responding to me, it means alot to share with others as I have not yet spoken with someone else who is going through this or has gone through it recently.

Sarah; could it be TSI (thryoid stimulating immunoglobulin?) Oh, yes the emotional and mental goes haywire. Actually, left untreated for hyper, the patient can become psychotic.

I personally availed myself of counseling to get me through the most horrid horrid time of my life. It was worth every penny. And I also quit fooling around with the antithyroid med and just had my thyroid zapped. Then and only then was I on a healing pathway.

Many here will share their stories, I am sure. Thank God you have your parents to be supportive of you.

[lavender]

I was crazy emotional while hyperthyroid and on anti-thyroid drugs. Lots of anxiety and sleeplessness at first/then episodes of rage. I was already seeing a therapist and could not figure out what was going on with me until hyperthyroid finally got diagnosed. Even after my diagnosis, psychotherapy and relaxation exercises were essential just to help me cope.
I had to take disability leave from work because I could not remember anything. I was really not myself. Felt like I was having an out of body experience, and like I was high all the time. That was from all the adrenalin my body was making in response to the high thyroid levels. I could not concentrate on anything. Could not read a book or even watch TV at my worst. Had no energy to do anything.
Basic self care was a challenge. Tried to get prepared meals from a local organic restaurant so I would at least eat one decent meal a day. I had friends check in on me several times a week, daily when possible. I was unable to drive and they got me out of the house and they were really just wonderful.
Things changed as I went eurothyroid on meds, but I was still not functional. Therapist told me my body was basically detoxing from the super high thyroid levels that had been in my blood for months. I had emotional highs and lows. I could easily have been diagnosed bipolar with paranoid tendencies. I probably was psychotic.
Thankfully, both I and my doc knew it was my thyroid, and I did not end up with a whole battery of psychiatriac drugs on top of everything else. I do not respond well to pharmaceuticals and knew that even the thyroid drugs were taking their toll physically end emotionally on my body.
This was all pretty terrifying. I had a scholarship to start graduate work this month, and I had no idea if I would ever get my mind back. My doc assured me that I would feel better once my thyroid was "terminated." I think this was the best advice possible.
I had my thyroid removed, and felt better pretty immediately. Started graduate school 4 weeks later. At 6 weeks, I feel more emotionally stable that I can remember for years. I am still tired a lot, but I am hopeful that this will get better in time as my thyroid replacement is adjusted. Concentrating on school work has been a bit challenging. I am not sure how much of this is thyroid related and how much is haven't-been-in-school-for-10-years-itis. I am trying to be patient with myself, taking a light course load, and not looking for part time work until I feel really stable.

[sarah_r]

Lavender, thanks for your response. I imagine going back to study would be hard after 10 years. I found going to Uni really challenging even straight out of high school. I am interested to hear about having your thyroid removed. I don't think I'd hesitate too much to do it if it is going to help me return to normal life :-) How was the surgery? Is it a simple procedure or not so? Does it mean you will be on medication for life now? As I am 25 I am very much aware that I need to ensure my fertility is safe, so does the procedure affect this?

I am glad you are being patient with yourself, it is a lesson we must learn from this thyroid experience. I don't know about you but I was on a bit of a self destructive path before this happened, I was not putting my own needs first and wasn't listening to my heart about what I wanted to be doing career wise. What are you studying now? This time on the couch and in bed has helped me to have many realisations. did this happen for you or were you to unwell to think clearly?

One of my realisations came in the form of a blog, you may be interested- being sick inspired me to write. http://theansweriswriting.blogspot.com

Thanks again for sharing, it is much appreciated.

[sarah_r]

Yes I have been in counselling since April when I had to leave my job because I was so unwell and I knew it was going to be some time before I'd be back to my usual self. I was diagnosed with anxiety and depression. I also felt like a bit of a zombie, not really connected to the earth- awful. As much as this has been a challenging time, nearly the worst of it was trying to work and function 'normally' to maintain my job. It really pushed me over the edge. The counselling has been fantastic and I have also been having regular acupuncture & bowen therapy aswell as some reiki. I also have studied reiki so I reiki myself every day.

I think you are right, TSI is the one I was talking about.

When you say zapped, is that the radioactive treatment? I know of someone who had that and says she would not do that again if she could go back in time, I think because she then experienced hypothyroidism. Have you been in good health since?

Thanks again for sharing with me, it is so helpful :-)

[lavender]

I knew in my gut that I wanted my thyroid removed. To me, it was trying to kill me, and I wanted it out. My body tends to overreact to pharmaceuticals, so I knew I would never feel well on meds, and had a sense that I would not respond well to RAI.
Surgery was, well surgery. It involves slicing your neck open. It's really important to find a good, experienced surgeon because thyroid removal is like really fine micro-surgery and it can permanently damage your vocal cords or parathyroids which are really important for regulating calcium levels in your blood. (I am dealing with parathyroid issues now, and in hindsight probably would have spent more time looking for a surgeon who did more thyroid removals)
I was in surgery for about 3 hours (which as longer than expected, was never told why) I woke up with a really bad sore throat and a raspy voice. There was about a 2 inch incision in my neck. I was in quite a bit of pain, needed narcotics for a few days, drank a lot of hot tea with honey, and ice water. Kept an ice pack on my neck for about a week until my stitches came out.
I was pretty out of it for about a week, which had a lot to do with calcium issues. Once that got under control, I was amazed at how much better I felt. Had more energy than I had in years. have felt really emotionally stable since. I think my thyroid was ill for years and really affecting my overall well-being.
I will be on thyroid replacement hormones for the rest of my life. Your body can not function without a certain amount, but then too much will harm it as well. It is a delicate balance which I think is easier to balance by artificial means than with an out of control thyroid. I am also taking calcium supplements waiting to see if my parathyroid kick back in or not. The way I see it, the pills I take now are both replacing things my body would have anyway, which is much gentler than a med trying to shut down your immune system with anti-thyroid drugs. Doesn't seem to cause the same negative reaction as most pharmaceuticals do to me.
Yes, I can still have kids, and want to really bad. Anti-thyroid drugs do pose some risks to a developing fetus. It was important for me to deal with my thyroid before I was ready to get pregnant. When I do get pregnant, I will have to make sure that my thyroid levels are stable, which is what I am already learning to do now.
Thanks for the encouragement about school. My early 20s involved quite a bit of self-destruction as well, which is why I took so much time off before grad school. I had a lot of emotional healing to do. Then my body shut down. I have been on a 6+ year journey to health and wellness. I am really hopeful that this was the last big hurdle for a while.
I am attending a counseling program at a seminary. I have wanted to be a therapist my whole life, and have found spirituality to be essential to my own healing. I want to be able to incorporate it into my own counseling practice, which is why I am at a seminary. I have been working in mental health/addictions since I completed my undergraduate, and the positions I can get without a masters degree are really physically demanding. I loved what I did, the clients I worked with, but it really took a toll on my body, and this will allow me to do something I think I can manage long term.
I really couldn't think clearly while I was sick. The one thing that it gave me was a whole lot of empathy for former clients who have mental illness that do not go away! It sounds like you are in a much better position than I was!
By the way, Reiki is pretty awesome!

[Andros]

Yes I have been in counselling since April when I had to leave my job because I was so unwell and I knew it was going to be some time before I'd be back to my usual self. I was diagnosed with anxiety and depression. I also felt like a bit of a zombie, not really connected to the earth- awful. As much as this has been a challenging time, nearly the worst of it was trying to work and function 'normally' to maintain my job. It really pushed me over the edge. The counselling has been fantastic and I have also been having regular acupuncture & bowen therapy aswell as some reiki. I also have studied reiki so I reiki myself every day.

I think you are right, TSI is the one I was talking about.

When you say zapped, is that the radioactive treatment? I know of someone who had that and says she would not do that again if she could go back in time, I think because she then experienced hypothyroidism. Have you been in good health since?

Thanks again for sharing with me, it is so helpful :-)

I am not hypothyroid as I am taking medicine for that. I am sorry I had RAI because I will never know whether I had cancer or not. I had to have RAI 3 times as the bad bad thyroid would not die! LOL!!

You are a smart lady; very smart. I am a big proponent of counseling; in professional hands, of course.