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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If anyone has other Autoimmune (AI) diseases as I do, be aware that hypO-hell can cause problems to those diseases as well.
Take as an example of myself. Once I had dipped hypO-hell several years ago, it affected the Rheumatoid Arthritis that I had had for over 10+ years at the time. I immediately went from walking so-so to not walking hardly...overnight and right into using the wheelchair and a scooter. My kids will tell anybody who asked what happened to me, that this really did happen to me over night. It took me many, many months to climb out of hypO-hell. Even when I did climb out of it, my walking was still quite impaired. I am so bent out of shape, I have to sleep in a LazyBoy type of chair. I have not slept in a bed for over five years. To straighten out, I will need to get my joints replaced, something I don't have the courage yet to do so because I don't know if it'll work successfully for me or not, after reading many horror stories from joint replacements sufferers. So I continue to suffer. Most definitely get the Free T4 and the Free T3 at mid ranges or wherever one feels their best there at. {{{hugs}}} 
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(((mmz)))
Thanks CD, sooo true. These damn doctors and endo's!! I lived in hypo hell for over a year! I was hemorrhaging so badly for 3 months that my gp told me she thinks I may have cancer! After blood tests, 2 pelvic ultra sounds, and a trip to the Gynecologist - I learned it was because I was hypo as hell! I was fine! I did not have cancer! You know who told me this? The Gynecologist. After his examination and listening to my graves/rai journey, he was disgusted at my GP and Endo. I was told that I didn't need labs done to know that I was hypo. He took one look at me and said I was 'text book' and that he could take a picture of me and put it in a medical jounal to show the "face" of hypothyroidism. I've just come out of it in the last few months. I had to trick the doc at the 'walk-in' clinic into medicating properly for crying out loud - long story...sad but true. Right now I don't have and endo or regular doctor. My Endo dumped me because her ego was too huge to listen to anything I had to say and my gp is freaking useless, so I had to go into a 'walk-in' clinic and thankfully the doc their gave me what I needed (137mg of synthroid) without labs. He gave me a rec and said to have my labs done the next time I see him. I have a months worth of meds for now. I know my free t's are at the high end of the range and I'm sure my tsh is low or suppressed. I feel alright and am now out of hypo-hell, still having some hypo symptoms, but out of 'the hell'. I do have to get my labs done though and get on with this...I'm just terrified that when he see's my tsh low he is going to want to dose me accordingly and I'm going to have to fight like hell again - and I'll probably get dumped again...surely he'll want to lower my dose and the hell will begin all over again. This terrifies me to no end. I have to face this. I have a month to find a doc that will listen and dose me on my Free T3 and Free T4 - Not my TSH! I had RAI so I'm on my knees and at the mercy of these endo's and doc's. Wish me luck!
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I was kept hypo for over a year as well. It got to the point where I said what I had to to appease the docs but did what I had to do for me. This is why education is soooo important. If you dont do your research and learn about this disease and blood tests...you almost become a victim of the medical profession. Dont get me wrong...we need the docs...they do play a role...but it rests on our shoulders to become well again.
I spent hours and hours over the coarse of a year before I was able to take my health into my own hands. The help I received here and Elaine Moore has been my main sources of info and motivation to take the leap and trust that remission is indeed possible. I cant stress enough how important self education is. It makes the difference between feeling well and not. Thats not to say that down the road... ablation... is the right choice for you. Its all about making a educated decision. Big Hugs...Kathy
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wow, i had a lot more symptoms that i thought, i wondered why i had pimples on my chest an arms, i guess that was why! along with the ear ringing, carpal tunnel symptoms...the list goes on. i really need to make a list of all these things, not sure if i would matter to my endo, but just the fact that i'm not experiencing these things for no reason makes things easier, i guess i'm still hypo, not as much as i used to be, i have some hyper symptoms, but more hypo. i've probably been kept hypo since i had my surgery, wow this is frustrating!!!
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I just remembered something my endo told me. I havnt done any research into this so I cant really argue it or have an educated opinion about this. Perhaps someone else will know.
On my last visit to my 2nd endo we were talking about my blood results. I explained to him that from what I had learned...I was still hypo. He explained that...when you have graves you have an injured thyroid due to the immune system attacking it.. I am still within range but on the lower end with the TSH high. Its important to to keep you like this so the thyroid is rendered inactive. An inactive thyroid heals better than an active one. In order for your thyroid to heal itself...we need to do this for up to 18 months. When the 18 months is up we stop the meds and see what happens. This is when I just couldnt do it anymore, I was making TSH and my hypo symptoms were getting in the way of life. Thats when I decided to slowly reduce my meds. By this time I had lost faith in my Enos mainly due to the comment he made about the changes in the TSH ranges. They had been lowered for about 3 years. My GP was going by the new ranges but my Endo...who just finished Endo school...refused to acknowledge them. Has anyone done research into this...keeping you hypo so your thyroid can heal? Just curious. Big Hugs...Kathy
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Dairytech It's a load of BS I've heard it myself you see they find it more manageable to keep you hypo than hyper that word seems to scare them.
You have or had GO well Hypos sure can make the condition worse give me hyper over hypo anyday though I would choose to have neither, Being hypo can cause a multitude of problems, diabetes, arthritis, joint pains dry skin, hair loss, weight gain, cardiac problems and they say it is better for you. Anyone who tells you that just keep on walking and don't ever look back.
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I think everyone knows I have done a TON of research since I started my Graves' journey in June 2007.
Endo #3 shared a similar concept....she told me my body was forgetting how to make TSH - DEAD WRONG!!! I even ran endo #3's comment by Elaine - her response "...is complete nonsense". LOL So is the statement that Kathy's doc made to her. Picture this....you get a cut....it's pretty bad....you apply antibiotic ointment.....you get some dirt in it....it gets infected....you apply antibiotic ointment and you eventually heal. Good chance, no scar. This is Graves' disease - only a little different. For some unknown reasons (theories are out there), our bodies start producing antibodies that attack the thyroid (we got that cut). The thyroid starts making extra thyroid hormone....too much hormone. Our pituitary gland, that works in conjunction with the thyroid, says "Hey", the thyroid is getting stimulated to make extra hormone....I don't need to make any more Thyroid Stimultating Hormone (TSH). Our body is putting on the antiobiotic ointment....the thyroid doesn't allow itself to be damaged by excess thyroid hormone....it releases it to the body and causes hyPERthyroid symptoms. Hmm...now the body is "infected" by hyPERthyroid symptoms. We take ATD"s to bring down those too-high levels of thyroid hormone (the is the 2nd "application of ointment") Our bodies are relieved from the hyPERthyroid symptoms and we now can heal. Case closed. I provided a link in my "Ammo for TSH Fight" thread. It explains how our body does just fine with suppressed TSH. Our pituitary is doing it's job when it doesn't make TSH when our thyroid hormone levels are right for us.....the pituiary is still working....it's still smart enough to realize if and when our thyroid needs stimulation. The link is in-medical-ese.....I just provided the "English" version Here's the link http://jcem.endojournals.org/cgi/c... Knowledge is power! All the best, Carol PS Please know that some people might have other extenuating circumstances such as goiter, nodules, etc. For the most part, we and our thyroids can heal from Graves' disease, having a suppressed TSH for YEARS. Not surprisingly, I have a link to a medical journal that confirms this. :)
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Just for the record....when your TSH is "showing" and your FT4 level is low, you are most likely hyPO..
Your thyroid isn't inactive.....actually, your pituitary gland is SCREAMING (by making TSH) to your thyroid to produce more thyroid hormone (as accurately measured by your FT4 level) If you really want to let your thyroid become inactive, you would do a meds regimen called "Block and Replace Therapy" aka BRT.....this is sometimes done with patients that aren't in remission but have gone hyPO on low doses of ATD's. The patient would take a small dose of ATD coupled with a low dose of thyroid hormone replacement....this would, in essence, take care of the body's needs for thyroid hormone while giving the thyroid a rest. Ya know....the worst part with these docs is how they continue to dispute the SOLID medical evidence we present to them....or how they fabricate stories to explain things.....maybe some of the gar-bage we hear is "old thyroid news" but some of "the news" has been around a long while.......maybe they're not even aware of this stuff 'cuz they haven't kept up and use arrogance to hide this? Bottom line, we gotta do what we NEED to do so we can heal from this disease in spite of the docs.
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sheesh, I sure wish this site had an edit button for posts.
Truly, if anyone is "showing" TSH within a year of starting treatment with ATD's, they are hyPO - hands down....the patient has been overmedicated with ATD's There is now way that the Graves' antibodies are gone that soon. The TSI antibodies are stimulating the thyroid to produce thyroid hormone and the pituitary correctly stops producing TSH. I have a medical journal article that shows the timeline for antibody reduction....it's easily 2-4 years after ATD treatment and can be as long as 10 years after RAI (surgery is in the middle) So, if you're "showing" TSH early in the game, you are most likely overmedicated.
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I started making TSH in my 3rd or 4th month of being on meds. I say 3rd or 4th because my lab wouldnt test my TSH on a few of those months. This was at the beginning of my Graves and TED. I was still looking towards the medical community for a cure while I was researching and gathering info. Being hypo did not make my TED worse but it did prevent healing. Being hypo did cause edema around my eyes. Even though Im in remission now...my FT4 fluctuates between mid and low ranges... edema is still a problem for me. But not as bad as it was.
Lolly....I would take hyper over hypo any day too. My case was a bit different. I had a thyroid storm with my FT4 just 7 points over my range and with my FT3 just 3 points over my range. I dont have a lot of room for error. I have heard of many people with there levels 2 times greater than mine and not feel any symptoms. Cd...I am under the impression that once you start making TSH on your own...remission is likely or at least euthyroid on small amounts of ATD's The docs for some reason insist on going the whole route...18 to 24 months...regardless of your levels and symptoms....Im sure this is also for legal reasons. This is one of the reasons I waited so long to do my own reductions. Lack of education was another reason. This is so great...I love having these conversations about what we have learned vs what we were told by our docs. The wealth of info that comes from this is priceless...thanks for everyones participation. Big Hugs...Kathy
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