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Does It Really Get Better?
So many people suffer with this dreadful diagnosis and it feels like you're slowly dying. Does everyone that's diagnosed with this crap eventually feel better or do most of us have to look forward to spending the rest of our lives feeling so horrible?
As I thought about your reply, I decided that we should not let you go to the doctor appointment without being fully prepared for the arguments/excuses you will likely hear. So I have tried to anticipate the things you will need to be aware of.
The "immaculate TSH Belief", by which the doctors think that TSH reveals everything that is needed, since it accurately reflects levels of thyroid hormones in the body. The answer is that extensive searching of the literature found no statistically valid data that supports this claim. Instead there is an abundance of info that shows that TSH correlates poorly with both FT4 and FT3, and even worse with symptoms. The widespread use of TSH seems to be more related to doctors wanting to rely on lab tests rather than symptoms for diagnosis, plus holding down testing costs for insurance purposes. This link gives some insight into why we went from symptoms based diagnosis years ago to TSH testing now.
http://www.thyroid-info.com/articles/david-derry.htm
The next thing you might hear is that "we don't need to test for FT3. If we test for FT4, then FT3 can be adequately estimated". This is false because it assumes that the patient's body consistently converts T4 to T3. The conversion can be very inconsistent, plus when taking significant doses of T4 meds, the conversion is frequently less than adequate, resulting in abnormal ratios of T4/T3. In view of the importance of FT3, why not just test and be sure. By the way, I say that FT3 is so important because studies have shown that it correlated best with hypo symptoms, while FT4 and TSH correlated very poorly. This is only logical when you consider that FT3 is the thyroid hormone that actually goes into receptor cells and causes the biological activity. Here is a link to the study of the correlation of the main thyroid tests to hypo symptoms.
http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002
As far as T4 meds being the only option, that is also false. If your body converts the T4 to T3 adequately, then T4 is a good option. If not, then just taking more and more T4 does not work. I did that for 25 years, working my way up to a max. of 225 mcg of Synthroid, and still had lingering hypo symptoms. After learning about the importance of FT3 on the Forum, I got mine tested and confirmed it to be low and then got my meds changed to a combo T4/T3 med and after tweaking to get to the right amount, I now feel best ever. You may find this link to be interesting on this subject.
http://thyroid.about.com/b/2010/05/17/t3-superior-t4-levothyroxine-hypothyroidism-thyroid.htm
In understanding why so many doctors promote T4 meds, just be aware that the T4 meds are made by the large pharmaceutical companies who support the Professional Associations of doctors and also University research projects, etc. T4 meds are more expensive than the natural, desiccated types. So in understanding why T4 meds are promoted so heavily, just follow the money.
Don't want to overload you here, just give you enough info to fight off the typical arguments you probably will run into. The bottom line is that you should not give in. Be your own best advocate and get the testing and medication really needed to make you feel better. If you want to chat with a fellow Aussie that has been through a lot of this, you might try sending a PM to redheadaussie.
The "immaculate TSH Belief", by which the doctors think that TSH reveals everything that is needed, since it accurately reflects levels of thyroid hormones in the body. The answer is that extensive searching of the literature found no statistically valid data that supports this claim. Instead there is an abundance of info that shows that TSH correlates poorly with both FT4 and FT3, and even worse with symptoms. The widespread use of TSH seems to be more related to doctors wanting to rely on lab tests rather than symptoms for diagnosis, plus holding down testing costs for insurance purposes. This link gives some insight into why we went from symptoms based diagnosis years ago to TSH testing now.
http://www.thyroid-info.com/articles/david-derry.htm
The next thing you might hear is that "we don't need to test for FT3. If we test for FT4, then FT3 can be adequately estimated". This is false because it assumes that the patient's body consistently converts T4 to T3. The conversion can be very inconsistent, plus when taking significant doses of T4 meds, the conversion is frequently less than adequate, resulting in abnormal ratios of T4/T3. In view of the importance of FT3, why not just test and be sure. By the way, I say that FT3 is so important because studies have shown that it correlated best with hypo symptoms, while FT4 and TSH correlated very poorly. This is only logical when you consider that FT3 is the thyroid hormone that actually goes into receptor cells and causes the biological activity. Here is a link to the study of the correlation of the main thyroid tests to hypo symptoms.
http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002
As far as T4 meds being the only option, that is also false. If your body converts the T4 to T3 adequately, then T4 is a good option. If not, then just taking more and more T4 does not work. I did that for 25 years, working my way up to a max. of 225 mcg of Synthroid, and still had lingering hypo symptoms. After learning about the importance of FT3 on the Forum, I got mine tested and confirmed it to be low and then got my meds changed to a combo T4/T3 med and after tweaking to get to the right amount, I now feel best ever. You may find this link to be interesting on this subject.
http://thyroid.about.com/b/2010/05/17/t3-superior-t4-levothyroxine-hypothyroidism-thyroid.htm
In understanding why so many doctors promote T4 meds, just be aware that the T4 meds are made by the large pharmaceutical companies who support the Professional Associations of doctors and also University research projects, etc. T4 meds are more expensive than the natural, desiccated types. So in understanding why T4 meds are promoted so heavily, just follow the money.
Don't want to overload you here, just give you enough info to fight off the typical arguments you probably will run into. The bottom line is that you should not give in. Be your own best advocate and get the testing and medication really needed to make you feel better. If you want to chat with a fellow Aussie that has been through a lot of this, you might try sending a PM to redheadaussie.
Thanks for your response gimel and the interesting letter. I regret how grim I may have sounded. Mood was the first victim of this demoralising condition.
My doctors are focused on pushing down my TSH levels. There is little discussion about T4 or T3 levels (latter haven't been checked). So it is true that the treatment approach seems pretty monochrome.
When I was first diagnosed, I did some reading and saw all the comments on dessicated pig thyroid and T3 levels. I did ask the specialist about these matters and he praised the efficacy of modern synthetic hormones (very simple molecule, indistinguishable from natural stuff, precise dosing, etc). He was very anti-dessicated material and talked about 'the bad old days' when it was the only treatment available. He also dismissed the need for T3 supplementation - I regret I can't recall the full details of his explanation, but I think it was something about 80% of T3 being produced by other parts of the body (I thought the liver made the conversion) and short life-span in body.
It was made to sound so simple, but I can tell my body's systems are in absolute chaos. At this stage, I am planning to hang on for another 2 weeks, get my bloods checked again and go back to hassle the doctors.
I am willing to ask the specialist to comment on your letter and discuss its contents with my GP. I certainly can't put up with these symptoms and I need to get my body under control to try and have the second child I planned. *sigh*
Rachel.
My doctors are focused on pushing down my TSH levels. There is little discussion about T4 or T3 levels (latter haven't been checked). So it is true that the treatment approach seems pretty monochrome.
When I was first diagnosed, I did some reading and saw all the comments on dessicated pig thyroid and T3 levels. I did ask the specialist about these matters and he praised the efficacy of modern synthetic hormones (very simple molecule, indistinguishable from natural stuff, precise dosing, etc). He was very anti-dessicated material and talked about 'the bad old days' when it was the only treatment available. He also dismissed the need for T3 supplementation - I regret I can't recall the full details of his explanation, but I think it was something about 80% of T3 being produced by other parts of the body (I thought the liver made the conversion) and short life-span in body.
It was made to sound so simple, but I can tell my body's systems are in absolute chaos. At this stage, I am planning to hang on for another 2 weeks, get my bloods checked again and go back to hassle the doctors.
I am willing to ask the specialist to comment on your letter and discuss its contents with my GP. I certainly can't put up with these symptoms and I need to get my body under control to try and have the second child I planned. *sigh*
Rachel.
Please read through this link to a letter written by a good thyroid doctor. It is sent to the Primary Care Doctors of patients that the author has consulted with about their thyroid problem. Note the clinical approach, which is the best way to treat a hypo patient like yourself. After reading it and comparing it to your own testing and treatment I'm sure you will have some further comments about your doctor.
http://hormonerestoration.com/files/ThyroidPMD.pdf
http://hormonerestoration.com/files/ThyroidPMD.pdf
I have the same concern, Coco. This is my first post here. I developed Hashimotos after the birth of my first child 7 months ago. I've gone from a healthy, fit person with a great life into a nightmare land of savage coldness, hair loss, violent palpitations, depression and exhaustion. I used to run every day, now I don't even want to go outside. My antibodies were around 1300, my TSH at 27. They doubled my dose of oroxine from 50 to 100 mcg when my heart slowed to 50 two weeks ago and now I am sitting here waiting another bunch of weeks for more blood tests. It's a miserable joke. Meanwhile what should be the best time in my life is passing by and I'm too weak to even hold my baby for long periods of time. I get a few minutes with a doctor now and then and it all just seems to be a cross-your-fingers-and-hope kinda treatment scenario.
Awful stuff :(
Awful stuff :(
For me it did get better after treatment. I had my thyroid removed 16yrs ago. I don't think I ever felt like I was dying though, in fact, I think I was to busy with my job, new born, to realize how sick I truly was.
Everyone is different on how their body reacts to things. I do take daily medication & at the moment no thyroid issues, but I guess you can't have any if you don't have one.
Everyone is different on how their body reacts to things. I do take daily medication & at the moment no thyroid issues, but I guess you can't have any if you don't have one.
In my case I have beens symptomatic for three years, since I was diagnosed with Hashi's, It has been like a slow roller coaster, I will go for two weeks feeling like crap, then maybe a week of feeling OK, then the two weeks of crap again and so on. But everyone is different, there are people out there that do better, I hope I just have not hit the right med/dosage yet. Regards FTB4
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