What is Graves Disease
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative ex...
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HyPOhell - How to Avoid a Trip
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HypOhell.
It sounds scary because it is scary. I know....I've been there....too many times. How did this happen? I had doctors that didn't know how to medicate me properly I want to help prevent this from happening to people. If a person chooses ATD's as their treatment choice, a doc that doesn't medicate properly will prescribe too high a dose that will bring on hyPO symptoms for the patient. If a person chooses RAI or surgery, there is no thyroid left to produce the thyroid hormones the body needs to function. A doc that doesn't medicate properly will not prescribe enough thyroid hormone replacement medication and that will bring on hyPO symptoms for the patient. I found a site that has a pretty comprehensive list of hyPO symptoms.....there are more lists out there with additional symptoms. Things got to a point during my treatment that I took to Googling any new symptom and hyPOthyroidism.....and I always found the symptom on one of "the lists". Now, I've always tried to be positive during my Graves' journey and always worked to move forwards - the docs didn't make it easy for me but I refused to give up. I didn't realize how bad things were for me until yesterday, when I decided to count up how many symptoms I've had. I have had as many as 60 hyPO symptoms at one time - that was during my worst-ever trip to hyPOhell. A "short trip" to hyPOhell could easily bring on 10-15 symptoms. It's called hyPOhell for a reason. Here's a link to the site: http://www.stopthethyroidmadness.c... The title of the site gives an indication of just how bad things are out there for thyroid patients, not just those of us with Graves' disease. The worst part is that it is COMPLETELY PREVENTABLE!!!!! You're probably saying to yourself.....what is the answer? How can I prevent a trip to hyPOhell? The answer is suprisingly simple. You've heard many of the "regulars" on here tell you to dose to achieve at least mid-range FT4 (Free T4) THIS IS CRUICIAL TO YOUR WELL-BEING!!! FT4 is a thyroid hormone level and it is the most reliable indicator of thyroid function. Thyroid hormone levels are like shoe sizes.....each of us has his/her own "best fit". We are not comfortable wearing someone else's shoes. Therefore, we won't be comfortable "wearing" someone else's thyroid level. Most people wear a shoe size somewhere in the middle of the range of the most common sizes.....this same concept applies to thyroid hormone levels. I dunno about you, but if I had to choose, I'd rather wear a slightly-too-large shoe than try to jam my foot into a too-small shoe. Same thing with thyroid hormone levels. We didn't know our "thyroid hormone level shoe size" before we got sick. So, it's best to "try on" the most common thyroid hormone level.....and the most "commonly comfortable" level is at least mid-range FT4. Your starting meds dose should bring you into mid-range FT4.....then, your dose should be adjusted to keep you there. You can then "wear" that mid-range FT4 for a little while to make sure you're comfortable.....if it doesn't feel completely comfortable, your dose can be tweaked just a little bit. Docs seem to dose in such a way that we are crammed into shoe sizes (thyroid hormone levels) that are too small, too low for our body's needs.....and that's when we get those hyPO symptoms How does this happen? The docs are looking at the leather the shoes are made of when they should be helping us find the right size. In thyroid terms, this means our docs are looking at our TSH (an irrelevant factor in Graves' disease) when they should be helping us find our "best place" FT4 level. So, if you want to avoid a trip to hyPOhell, you MUST do everything you can to get your FT4 to mid-range, at least and STAY there. It is possible....I've learned how to do it.....I don't even need a doctor to help me now. I've seen 3 endos since my Dx in June 2007......the first two pushed RAI....the third pushed surgery. All during my very first appointment. It frightens me to think that these same doctors that didn't medicate me properly on ATD's would be the same doctors that wouldn't have medicated me properly after RAI or surgery. I would probably have wound up living in hyPOhell - some peeps on here have visited hyPOhell for as long as a year - absolutely frightening. This doesn't have to happen to anyone......we are giving you the tools to prevent it from happening to you. Use the knowledge you've gleaned on here to advocate for the care you deserve. Get your FT4 to mid-range, at least and keep it there. Posted on 11/08/09, 08:11 am |
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Kathy
I don't mean to disappoint you but, Elaine Moore has confirmed to me and countless others that, if we start making TSH early on, it is due to the fact that we are overmedicated. Think about it, if our meds drive our FT4 levels too low for our body's needs, our pituitary gland senses this and makes TSH to stimulate the thyroid to make more thyroid hormone. Now, if you did not have any hyPO symptoms at whatever FT4 level that corresponded to the return of TSH, then that's different IMHO. Elaine confirmed to me that, once FT4 levels are at the right place for the individual (no symptoms) and TSH is higher than .4, remission is likely. Elaine has also mentioned that TSI less than 50 can indicate remission. Now, the "antibody expert" from Mediboard says this just might not be the case since the absence of antibodies is a better indicator of remission. The expert states that TSI must not only be less than 50 but we should also be testing negative for TRab, the blocking antibodies. I also know from Elaine's writings that being hyPO can cause an increase in antibodies.....an increase in TSI could keep TSH suppressed. Elaine also told me that, sometimes, blocking antibodies (TRab) are produced and they keep both the TSI and TSH suppressed while making the patient hyPO. I am very curious at to my own course with this disease since I went hyPO (symptoms and bottom-range FT4) on 1.25mg MMI but my TSH is still suppressed. I've been off meds completely since 10/08.....my FT4 rose to 1.27 (range .82-1.77) last week.....I still had about 30 hyPO symptoms last week. My latest-greatest Graves' doc is a "with-it" internist....she understands ALL things Graves' and told me she doesn't look at TSH (YAY!!!) I asked her to check my antibodies but, turns out, she only checked TPOab. I want to see what happens with my TSH moving forward before I ask her to test TSI and TRab.......all in due time. Also, Elaine told me that being hyPO can aggravate TED.....that has definitely been the case for my mild case. When hyPO, I have had extreme pressure, shooting pain, increase in lid lag and proptosis. Once again, guess the "everyone's different" adage applies here. I feel better and better each day....never counted up my symptoms before and I don't plan on doing that again :) I like to focus on the positive.....I am free from endos and it feels great!!! All the best, Carol 
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CD I like this thread and post. GOod thinking!!
I can make TSH easily, All I have to do is stop taking my thyroid meds. I had a doctor talk me into it 3 years ago. I was stupid and let the title of best endo in the nothwest get in my way. I had a fst trip down to the bottom pits of hypO hell and it took a VERY long time to crawl out of it. I was feeling really good after I had my last baby, He is 3 now. When he was 4 months old I whent and seen this doctor who is a friend of a nurse at the place that I worked at. SHe helped her with all the things I needed help with through this nurse. SO I thought I would see her as this nurse said she could pull some strings to get me in. I whent and I wanted to switch to Armour and she said it was to unstable to use. Something about the pigs diet couses inconsistancies with thyroid hormones. I said ok for some reason and she said that my TSH should be up higher than what it was so we had to reduce my meds. I did it with out really questioning her about it. SHe dis say that if I was not feeling well the next time I seen her we would add cytomel to my synthroid. I said ok. 3 weeks later I was so bad off I had not eaten in 4 days. My stomach was all hard and nothing wanted to come out. i would go in and out of reality and when I did take car of some of my children I did stupid things such as put shoes in the fridge and milk in the bathroom closet. I whent back to my old doctor and started taking my regular dose, but I was never able to feel as good as I had once did. Infact even with the old dose I had been taking I was still going in and out of reality and I had HUGE heart problems. When I dragged myself to a good doctor a year later he promised me to help me get back to feeling better and he did a great job, until I moved away. He kept his promis and so far he is the only doctor that has ever done that. I have to say thought hat every one on the medibaord that helped me to get to that point saved my life. I honestly believe that I would have died if it was not for there guidence and learning to get what was needed so I could take care of myself and my family. I won them my life. Angel
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