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Miserable symptoms with Hashimotos
In my doc's eyes I am managed with my Hashimotos disease and he doesn't know anything else he can do for me. I am presently on Armour a split dose of 2 grains a day. I have been on Synthroid and cortef in the past.I however feel as I'm just a shell of a person who suffers day in and dayout. I'm truely a miserable person and I know I must be hard to live with. I do not work because I am unable. The fatigue is so severe. I go through periods of either not being able to sleep even though extremly tired or excessive sleepiness where I have to take two or three hour or more naps throughout the day. I havn't felt refreshed from sleep for more than three years. My eyelids always feel heavy. I suffer from eyelid twitches(more than 6 months)extreme muscle spasms occurring anywhere in body on a dailey basis. Frequent headaches, sore achy muscles, extreme brain fog with periods of zoning out. I get depressed because I have a hard time dealing with all of this. My resources feel so low and I know I am not being the mother or wife that I should be.(also o% sex drive, I could care less if I ever have it again)
I'm truely miserable and I just want some relief. I've dealt with varying degrees of syptoms for 10 years now.(I'm almost 35)I feel I am too young to feel this tired and weak. When I do exert myself even a little it usally results in being in bed for days. I feel like I am at my wits end. I have done a lot of research in the past(I mean a lot)but I just can't help myself anymore I just feel too weak. Thanks for letting me vent. My 1600 char. are gone. -D
I'm truely miserable and I just want some relief. I've dealt with varying degrees of syptoms for 10 years now.(I'm almost 35)I feel I am too young to feel this tired and weak. When I do exert myself even a little it usally results in being in bed for days. I feel like I am at my wits end. I have done a lot of research in the past(I mean a lot)but I just can't help myself anymore I just feel too weak. Thanks for letting me vent. My 1600 char. are gone. -D
Hi LowMac. Since you said that you welcome comments from other patients, all I can tell you is that paying attention to the free T3 and NOT the TSH made a huge difference in my treatment with combined T3/T4 treatment. When I was treated by the TSH and thus left in that terrible range, I had MANY lingering symptoms like yours--symptoms of those listed as CFS, hypotension, low tolerance for any activity, body aches!! I then joined a few groups and to my amazement, discovered MANY other folks just like me--being treated by the TSH and still being sick!!
And docs did the same thing to me--telling me that those symptoms might be "this" or "that", ruling out "this" or "that". I went YEARS in misery with no definitive diagnosis other than "it might be CFS", and "it might be an energy metabolism disorder akin to Glycogen Storage Disease" or "it might be the lingering effects of your acute Epstein Barr Virus"! It was only when I found a doc to stop treating me by the TSH that I got better!! All along, it was an undertreated thyroid!!
I don't take away that you might have other issues that have been mentioned here, but I strongly suspect that other issues you have described are because you are being treated by the TSH and not being allowed to raise that free T3!! I found a doc who allowed me to dose by symptoms, and when my symptoms were gone--the exact same symptoms you describe--we did labs--my free T3 was at the top!! And there is PLENTY of literature out there to substantiate this, not withstanding MY experience!!
And by the way, when you do research--and you'll find reference to this many places--you find out that the most accurate labs are done BEFORE you take your thyroid t4/t3 meds, such as in the morning. Why? Because the direct T3 in dessicated thyroid or T4/T3 combined meds rises about 2 hours after you take it, then falls. You want to do labs before that.
And docs did the same thing to me--telling me that those symptoms might be "this" or "that", ruling out "this" or "that". I went YEARS in misery with no definitive diagnosis other than "it might be CFS", and "it might be an energy metabolism disorder akin to Glycogen Storage Disease" or "it might be the lingering effects of your acute Epstein Barr Virus"! It was only when I found a doc to stop treating me by the TSH that I got better!! All along, it was an undertreated thyroid!!
I don't take away that you might have other issues that have been mentioned here, but I strongly suspect that other issues you have described are because you are being treated by the TSH and not being allowed to raise that free T3!! I found a doc who allowed me to dose by symptoms, and when my symptoms were gone--the exact same symptoms you describe--we did labs--my free T3 was at the top!! And there is PLENTY of literature out there to substantiate this, not withstanding MY experience!!
And by the way, when you do research--and you'll find reference to this many places--you find out that the most accurate labs are done BEFORE you take your thyroid t4/t3 meds, such as in the morning. Why? Because the direct T3 in dessicated thyroid or T4/T3 combined meds rises about 2 hours after you take it, then falls. You want to do labs before that.
On the breast cysts, I know a number of women who have had breast cysts from being hypo. Hypothyroidism can cause a number of skin changes, and cysts and boils are a symptom. During the time I was undiagnosed, I had two breast cysts removed as well as facial cysts and one shoulder cyst.
Also, my very first symptom of hypo (after childbirth) was breasts leaking. Evidently that's when my TSH rose at age 24. Since I did not get diagnosed then, my pituitary probably was affected eventually, and then my TSH could not rise appropriately. I was exhibiting the final stages of hypothyroidism before I got diagnosed at age 48. This is probably a reason why the TSH misses about a 1/3 of those who are hypo.
For those wanting relief from hypo symptoms, my own experience is that Armour is the best medication for relief of all symptoms. And with Armour, avoid dosing by the TSH. The normal feedback loop is broken with the introduction of oral thyroid hormone and the best therapeutic goal is to get ones Free T4 over the midpoint of the range and the Free T3 at the higher end of the range or slightly over. One should of course monitor temperature and pulse.
I think it is so important to have enough thyroid hormone to get rid of hypo symptoms. If you don't, you risk further health problems. I have been cured of so many things that I had over the 15 years before diagnosis - chronic fatigue, IBS, asthma, anxiety, neck and shoulder pain, carpel tunnel, skin disorder, menstrual disorder. All of it has been cured now...and I only take one medication - Armour.
Cindi
Also, my very first symptom of hypo (after childbirth) was breasts leaking. Evidently that's when my TSH rose at age 24. Since I did not get diagnosed then, my pituitary probably was affected eventually, and then my TSH could not rise appropriately. I was exhibiting the final stages of hypothyroidism before I got diagnosed at age 48. This is probably a reason why the TSH misses about a 1/3 of those who are hypo.
For those wanting relief from hypo symptoms, my own experience is that Armour is the best medication for relief of all symptoms. And with Armour, avoid dosing by the TSH. The normal feedback loop is broken with the introduction of oral thyroid hormone and the best therapeutic goal is to get ones Free T4 over the midpoint of the range and the Free T3 at the higher end of the range or slightly over. One should of course monitor temperature and pulse.
I think it is so important to have enough thyroid hormone to get rid of hypo symptoms. If you don't, you risk further health problems. I have been cured of so many things that I had over the 15 years before diagnosis - chronic fatigue, IBS, asthma, anxiety, neck and shoulder pain, carpel tunnel, skin disorder, menstrual disorder. All of it has been cured now...and I only take one medication - Armour.
Cindi
I had RAI for "Graves" diagnosis 3 years ago and was on .125 Synthroid for 2-1/2 years, and felt horrible. So I asked my PCP to try Armour. I was at 1.5 grains of Armour and felt terrible, too. So I started researching, and changed to a Naturopath/D.O. I read that low ferritin can cause many of the same symptoms, so I asked the ND to test that, and he did. (I see that Doodlebug mentioned ferritin, too....) He also tested Free T3 and Free T4, and for the first time, antibodies! . My ferritin was fine, I was just very hypo on 1.5 grains. But, when I tried to increase the Armour, I had heart palps, nervousness, etc. So the ND tested adrenal function using the Adrenal Saliva Index test. None of the other docs I had seen even knew about testing adrenals. I had adrenal fatigue, so he put me on adrenal support, and then I was able to raise Armour slowly to my current dose of 3 grains. At each raise, I felt a little bit better, but I know there's still room for improvement. But my TSH now is below the accepted range. My doc says that TSH doesn't mean much when you have antibodies, or when you are taking thryoid replacement, so don't allow docs to dose by it. They should dose you by HOW YOU FEEL!
By the way, Miserable Mom, I forgot to mention--I've known a few folks who also had a high free T3 and yet still had the symptoms you are having. With them, they either had low cortisol, or low Ferritin---so the T3 was not getting distributed from their blood to their cells. It wasn't because they were on too much Armour.....I read about them on Yahoo groups natural thyroid hormones group..
That's wonderful news! I hope it all works out for you
and you are able to get some relief. Please keep me posted
on your progress.
Take Care!
-D
and you are able to get some relief. Please keep me posted
on your progress.
Take Care!
-D
Miserable Mom, I have noticed that LOTS of us hypo folks have low Ferritin, which is storage iron, and it can cause the exact same symptoms as low thyroid--including depression, achiness, fatigue. I discovered I had extremely low Ferritin, and also had all of the above symptoms, so I highly recommend you get that tested. And don't just get your "iron" tested--you can so-called normal iron, and yet have undetected low Ferritin, I've learned.
I also discovered that I was unable to raise my Armour, which I needed to do, when my Ferritin was so low. My doc put me on high amounts of iron, and once I finally got my Ferritin up to 70, I felt SO much better. I also discovered that I could raise my Armour, which was giving me problems when my Ferritin was so low. Today, I am at 3 1/2 grains. My doc has also learned that dosing by the TSH leaves her patients still hypo!!! So, she pays more attention to the free T3 and free T4, and even more, she pays attention to SYMPTOMS.
I also have found that going by temps DOES make a difference, unlike what was said here. Before I got on Armour, and before I found the great dose I'm on now, I consistently had LOW temps. Now that I am on my optimal dose of Armour, I have a before-rising temp of 97.8 - 98.2 and a mid-afternoon temp of 98.6--and those are exactly what is recommended. You have to use a mercury thermometer.
Also..you mentioned being on Cortef, but I don't see you mention why you were on it. Another thing I've learned is that LOTS of hypo folks seem to have sluggish adrenals. Do you? I never did, but many hypo folks on a natural thyroid hormone group I belong to, do! Sluggish adrenals mean you don't produce enough cortisol, and cortisol is needed to distribute thyroid hormones from your blood to your cells. You might want to get that checked. Most docs do a one time blood test, but you really need to do something like a 24 hour adrenal saliva test. It tests you 4 times during a 24 hour period. You could have a NORMAL reading one time, but not the other three---thus the need to do a 24 hour test. ZRT labs has one you can do.
Hang in there. I HAVE been where you are, and my life changed 360 degrees thanks to finding a doc who allows me to dose by SYMPTOMS, not just labs, and corrected my Ferritin.
I also discovered that I was unable to raise my Armour, which I needed to do, when my Ferritin was so low. My doc put me on high amounts of iron, and once I finally got my Ferritin up to 70, I felt SO much better. I also discovered that I could raise my Armour, which was giving me problems when my Ferritin was so low. Today, I am at 3 1/2 grains. My doc has also learned that dosing by the TSH leaves her patients still hypo!!! So, she pays more attention to the free T3 and free T4, and even more, she pays attention to SYMPTOMS.
I also have found that going by temps DOES make a difference, unlike what was said here. Before I got on Armour, and before I found the great dose I'm on now, I consistently had LOW temps. Now that I am on my optimal dose of Armour, I have a before-rising temp of 97.8 - 98.2 and a mid-afternoon temp of 98.6--and those are exactly what is recommended. You have to use a mercury thermometer.
Also..you mentioned being on Cortef, but I don't see you mention why you were on it. Another thing I've learned is that LOTS of hypo folks seem to have sluggish adrenals. Do you? I never did, but many hypo folks on a natural thyroid hormone group I belong to, do! Sluggish adrenals mean you don't produce enough cortisol, and cortisol is needed to distribute thyroid hormones from your blood to your cells. You might want to get that checked. Most docs do a one time blood test, but you really need to do something like a 24 hour adrenal saliva test. It tests you 4 times during a 24 hour period. You could have a NORMAL reading one time, but not the other three---thus the need to do a 24 hour test. ZRT labs has one you can do.
Hang in there. I HAVE been where you are, and my life changed 360 degrees thanks to finding a doc who allows me to dose by SYMPTOMS, not just labs, and corrected my Ferritin.
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