Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I was wondering if anyone had excessive mucus when going hypo? I am currently almost off my ptu and last labs show me quite hypo. I have had problems thinking and understanding lately, I am also having insomnia? I cannot often remember what it is I am going to say when I am talking.
Thank you
Thank you
{{{hugs}}}
My labs on 9/27/11 were
THYROID STIMULATING HORMONE 1.34 0.35 - 3.30
THYROXINE, FREE (FREE T4) 0.43 0.56 - 1.64
The doctor wanted me checked 2 weeks later to see where I was at. He cut my meds in half from 200 mg to 100 mg a day of ptu based on the above labs. I am getting my blood drawn this afternoon. I am just not used to thinking so slowly! I cannot find words and I am so slow to understand what people are saying to me, blah!
I figured if I was hypothyroid I would be sleeping more instead I am having trouble sleeping. I am still not able to drink caffeine, I tried to for my lagging energy levels and got pretty sick.
I'm the one that used PTU, so I can help.
Trouble with so many symptoms on those long lists of either hypo or hyper, is they list only what happens at extreme levels. Not how we feel when we are off, but not hospitalized. LOL Most hyper and hypo symptoms over lap and language stars to fail.
Take sleep for example. Hyper most tend to just not sleep..had to get to sleep and once awake too soon, you might just as well get up becasue all that laying in bed thinking about it makes things worse. ;(
It is well known that hypo interrupts sleep. Sleep, awake, sleep, awake.
Both would be described as sleeplessness.
So your on 100 mg of PTU. Your getting closer to a maintenance dose.
PTU must be taken in three even doses each day.. every eight hours. So your going to need a pill cutter from the pharmacy or skill with your chefs knife. ;) When cutting PTU press just enough the pill pops into the piece you want. I eventually learned to pop my shards between my finger and thumb nail. Grinding down with a knife or pill cutter losses a bunch to powder..and less accurate doses. Some is going to happen, and that's okay too. I just tried to keep the powder to a minimum.
I found taking out my dose for the day, cutting them and making three little piles was the best way to keep track. Do not cut the pills ahead of time becasue the shards will not be perfectly even. But taking the dose per day..split up, results in the perfect amount per day. They sell cute little pill boxes too, and a tiny piece of cotton in there to prevent everything turning into crumbs was my technique.
Do you have Graves' or another reason for being hyperthyroid ?
How long have you been taking PTU ?
I have had Graves Disease since early 2008. I was taking 600 mg of PTU until about 6 mos ago. Each time my doctor tried to back off my dose my levels of TSH would become very low (.001) I think that stress played a role in my disease. ( At the same time I was diagnosed with GD my severely autistic son hit puberty with a bang. His behaviour was completely unmanageable with severe aggression and I really think that is why I couldn't achieve remission.)
So I am excited now to be down to 100 mg! I am hoping that my results from today's test will get me off this medicine!
I am not used to feeling hypothyroid. It is a very wierd feeling. I am tired but mostly absentminded and forgetful! I thought I would sleep better with hypothyroid ........not so much I have a very hard time falling asleep every night. I hope that when my levels are normal that will change. I hope that I will one day feel normal! It is hard for me to have a bad day, I am very busy with my son!!!!
It's very wrong to dose on TSH when a person has Graves' because our TSI antibodies work in place of TSH. A low TSH is completely normal when we still have TSI antibodies. My TSH was various forms of zero for the first three years I was on PTU, becasue of my antibodies. But.. I was even then ever so slightly over dosed and did not feel my best. Fortunately my doctors both reassured me the low TSH was normal and not to worry.
With Graves' we have only two ways of having TSH show up on our lab reports.
1. Overdosed enough the body reacts in crisis mode, and produces TSH in an effort to correct the too low levels of thyroid hormones ( FT4 and FT3).
2. When our antibodies lower and we hit remission. Then the TSH can take over for the TSI antibodies that were telling the thyroid to make hormone.
Here is my favorite site.
http://www.elaine-moore.com/Home/tabid/36/Default.aspx
Bookmark and learn the menu bar. There are drop down boxes with various subjects. Elaine writes in a way we non-medical people can understand, and she includes references we can further research.
Her book is the only one on Graves' and it is a standard reference for many of us as the years go on. Even though I am almost ten years in remission now, I still pull it out to double check sometimes when helping out here or on other Graves' groups.
The other good book is Thyroid for Dummies. It's still up o date and professional. It covers all types of thyroid problems, but he is one of the few doctors that does correctly understand Graves' and our antibodies.
Here is a link to the free Google books portions of the dummies book.
http://books.google.com/books/about/Thyroid_for_Dummies.html?id=Shq6Y7Px9b8C
Yes, stress does affect our antibody levels. Everyone has stress, we just need to find better ways to deal with it. That was probably the most difficult part for me. I'm still not close to perfect, but I am soooo much better at it.
So with the 600 mg a day and a TSH, it appears you have been living a less than ideal situation. That's a real shame.
As far as hypo symptoms.. they also vary by how hypo we are. Many shades of grey there. Another problem with thyroid levels not optimized.. the stress becomes a chicken or the egg deal.
So yeah you ! You've made it this far. now maybe we can add safety bumblers as you glide gently to remission. And if remission isn't right now, that's fine too. Once you get a better understanding you should be the one in charge of the dose and you can feel your very best.
The dose you want is to have will result in your FT4 at your own personal , optimal level. ..not just within the reference range.
Wow....this has been a real eye opener for me! According to this information I have been hypothyroid for a very long time! My levels haven't been anywhere near 1 for a long time!
Here are my levels since November of last year for T4
0.60 0.75 0.69 0.59 L 0.84 0.74 0.70 0.55 L 0.52 L 0.43 L
The standard range is 0.56 - 1.64
I guess now I know why I haven't felt normal for a long time! I will read on the website you sent and educate myself. I will also look into the books you recommended :) I really appreciate all your advice and help. I should've gone on here a long time ago! I am really kicking myself right now!
((Hugs))
T3 Uptake 26(24-39%)
T4 Free, Direct 1.31 (0.82-1.77 ng/dL)
TSH 0.931 (0.450-4.500 ulU/mL)
I have always been an anxious person and was just told it was stress and anxiety. It took 6 months for them to figure out it was my thyroid. I have an apt with and Endo Thrusday. Any advice would greatly be appreciated. Thanks!