Aa
thyroid confusion
I am Canadian and have been suffering with thyroid problems for a very long time. Initially I had Hashimotos which then progressed to Graves. I had radioactive iodine treatment 3 times between 12 and 15 years ago. I also had a hysterectomy including ovaries. My tsh keeps getting worse and worse and is now at 17.6 FT4 14.5 and FT3 3.6. I have tried increasing the dosage of synthroid and get awful side effects. Have alot of pressure behind my eyes like when my Graves was bad and now ringing in my ears. I'm sleepless and wake after a few hours with heart racing and feeling anxious and speedy. I've had alot of heart symptoms and awaiting a cardiologist. Tried adding timed release FT3 but felt very agitated, anxious, awful. Have been playing with levels trying to find some comfort. Seems I need more but my body can't handle it or it's not converting it properly. My GP is trying to work with me. I've had such bad luck and bad treatment over the years I'm afraid to try someone new. They don't get that when you feel that bad you can't just blindly take a dosage for a month or more hoping it will stabalize. I have been taking syn 75 plus about 1/8th of 25. Best I've felt was on two days 75 and one 88 and still I was hypo but felt my system going up and down and feeling very hyper after the 88. I suffered for years and was told all was fine and treated like I was a complainer and then when it got really bad and I actually had thyroid storm the endocrinologist said if you'd come to me 10 years ago I could have helped you. Mistrustful, frustrated and scared at this point. What can you suggest?
I know it's difficult to stick with a dose when you don't feel your best, but it is SO important to be consistent, especially if you are sensitive to thyroid meds and/or meds in general. If that means starting at a very low dose and increasing ever so slowly, then that's what it takes. I know it's hard to get intermediate doses. I split and/or combined to make all my doses (and I have all the half-empty bottles to prove it...LOL)
There are several different beta blockers (propanolol, atenolol, etc.), and I'd really encourage you to try another if you've only had experience with one. I know people who didn't like propanolol at all, but found atenolol completely acceptable, and vice versa. I couldn't have gotten to a therapeutic dose without the beta blocker. When I first started the BB, I felt a little "slow", but that feeling either went away, or I got used to it, and the BB is now quite transparent. A BB would level out both your HR and BP.
If you've been hypo for a long time (and since you don't feel you ever got to a therapeutic dose, I assume you have been), it does take time for your body to get used to having the hormones available again. Your body is used to compensating for lack of thyroid hormones (adrenals, perhaps?), and everything has to restabilize once you start meds. This is also true for low FT3.
If you haven't been converting properly, your body is no longer used to having T3 available.
I find the whole idea of taking one med (atenolol) to counter the effects of another (levothyroxine) completely reprehensible. However, I'd been so hypo that I knew there was nothing I could do...I had to balance it out. I do have to say that once my thyroid meds were adjusted properly, I felt better all around (including heart issues) than I've felt in years. I thought the more thyroid meds I took, the more they'd antagonize my heart, but that wasn't true at all.
Patience and balance!
There are several different beta blockers (propanolol, atenolol, etc.), and I'd really encourage you to try another if you've only had experience with one. I know people who didn't like propanolol at all, but found atenolol completely acceptable, and vice versa. I couldn't have gotten to a therapeutic dose without the beta blocker. When I first started the BB, I felt a little "slow", but that feeling either went away, or I got used to it, and the BB is now quite transparent. A BB would level out both your HR and BP.
If you've been hypo for a long time (and since you don't feel you ever got to a therapeutic dose, I assume you have been), it does take time for your body to get used to having the hormones available again. Your body is used to compensating for lack of thyroid hormones (adrenals, perhaps?), and everything has to restabilize once you start meds. This is also true for low FT3.
If you haven't been converting properly, your body is no longer used to having T3 available.
I find the whole idea of taking one med (atenolol) to counter the effects of another (levothyroxine) completely reprehensible. However, I'd been so hypo that I knew there was nothing I could do...I had to balance it out. I do have to say that once my thyroid meds were adjusted properly, I felt better all around (including heart issues) than I've felt in years. I thought the more thyroid meds I took, the more they'd antagonize my heart, but that wasn't true at all.
Patience and balance!
Thanks so much to both of you. It's so nice just to be heard. Goolarra you have voiced exactly what I've been going through for so long, years actually. The closest I could come to be comfortable and close to the normal range was alternating two days of 75 each and then one of 88 but still I was somewhat hypo and didn't feel that great. It was all I could tolerate. I am not a patient person and when I'm feeling awful it's very difficult for my to stick out a dosage for a week let alone a month. I had beta blockers once and they didn't agree with me and I'm reluctant to add anything new to the mix but I have had some success when using very small dosages of clonazpam when I feel too racy. I'm talking about half of .25 mg. I am very careful as I don't like taking that type of drug but it does take the edge off and help my palpitations and spikes in blood pressure. The main problem here is the leaps between dosages of synthroid and other thyroid meds. They don't have small enough increments. I have found a very good compounding pharmacy that will reduce T3 dosages right down to 1 mcg. I don't seem to even be able to tolerate 2 mcg. I get alot of pressure and pain behind my eyes and I feel dizzy and nauseous and very anxious. Your suggestion to break the meds up through the day is one I have dabbled with but haven't stuck too but was just considering that again. Your message today is invaluable to me because you haven't just said you have to stick it out you have given me some concrete tools to help with that. To gimel, I will definitely check out that site and will say that the info on this site seems tailored to me and has helped me alot. I can't tell you both how much I appreciate your feedback. The few times I've turned to the forum sites on the internet to get info I've found some extremist type nuts randomly throwing out info that wasn't accurate so it's refreshing to get your feedback.
Well, that's what I get for going off and having breakfast...have to scrap most of my comments and just say "I agree with gimel"! LOL
Another avenue to explore/do some research on might be RT3 dominance (also sometimes called Wilson's Syndrome or Wilson's Temperature Syndrome). Our bodies convert T4 to both T3 and RT3. RT3 is biologically inert, but it's a mirror image of T3 and can dock upside down at receptors in cells and block T3 from getting in. This is a controversial issue...many doctors don't "believe in" RT3 dominance.
I was very sensitive to meds increases, too. I dreaded every one of them. I was started on 88 mcg T4 (way too high), and I had to back down and back down until I was only taking 25 mcg, and still the tachycardia was intolerable. My cardio put me on a beta blocker, which helped immediately. I was then able to increase slowly and had to increase the beta blocker as well, but only once.
One thing I have always been very careful about is taking the SAME (exactly!) dose every single day. So, rather than alternate 75/88, I'd break each in half and take half of each, making sure to take the other halves of those same pills the next day.
"They don't get that when you feel that bad you can't just blindly take a dosage for a month or more hoping it will stabilize." The dose WILL stabilize after a month to six weeks, and it's absolutely essential that you be consistent. If you react to how you feel an a day-to-day basis, you are chasing a moving target, never letting the meds stabilize. That is not the way thyroid meds work...the way you feel today is really a combination of everything you've taken for the past 4-6 weeks. It requires patience, but trying to hurry the process usually just lengthens it (especially if you are sensitive to begin with).
The key is baby steps...increase very slowly, be consistent with your dose, and keep moving in the same direction (increasing). If you start swinging back and forth, it's almost impossible to figure out where you have to go from here..
Another avenue to explore/do some research on might be RT3 dominance (also sometimes called Wilson's Syndrome or Wilson's Temperature Syndrome). Our bodies convert T4 to both T3 and RT3. RT3 is biologically inert, but it's a mirror image of T3 and can dock upside down at receptors in cells and block T3 from getting in. This is a controversial issue...many doctors don't "believe in" RT3 dominance.
I was very sensitive to meds increases, too. I dreaded every one of them. I was started on 88 mcg T4 (way too high), and I had to back down and back down until I was only taking 25 mcg, and still the tachycardia was intolerable. My cardio put me on a beta blocker, which helped immediately. I was then able to increase slowly and had to increase the beta blocker as well, but only once.
One thing I have always been very careful about is taking the SAME (exactly!) dose every single day. So, rather than alternate 75/88, I'd break each in half and take half of each, making sure to take the other halves of those same pills the next day.
"They don't get that when you feel that bad you can't just blindly take a dosage for a month or more hoping it will stabilize." The dose WILL stabilize after a month to six weeks, and it's absolutely essential that you be consistent. If you react to how you feel an a day-to-day basis, you are chasing a moving target, never letting the meds stabilize. That is not the way thyroid meds work...the way you feel today is really a combination of everything you've taken for the past 4-6 weeks. It requires patience, but trying to hurry the process usually just lengthens it (especially if you are sensitive to begin with).
The key is baby steps...increase very slowly, be consistent with your dose, and keep moving in the same direction (increasing). If you start swinging back and forth, it's almost impossible to figure out where you have to go from here..
If you have the time and interest to do a lot of reading, I am sending you a link to the best site I have yet to find on thyroid issues. the thing I like best is that all the great info is supported by numerous references to scientific studies.
That is really good info some I knew and some I didn't. I have been suspicious about adrenal problems as well and had some testing but only by blood. They won't or can't do the saliva test. Considering I awake at night a lot with racing heart and hot I think cortisol is a problem. My estrogen seems to be fine so I don't think it's that and it's not consistent either. The doctor at the women's health clinic did test my cortisol levels by blood. AM count was 263 with a range of 140-690 and PM was 223 with range of 50=300. She felt this was too low. I have been tested for vitamin deficiencies but have just been reading about selenium and have started taking it. I was very hopeful as was my doctor about taking T3 but even in a small dosage I felt awful and couldn't handle it after 2 days. I first tried 5mcb and then 2 mcb. They said they probably could half it again so I might try that. I was told after having being so sick with Graves your system is often ultra sensitive to the hormone. I guess it's worth a try. Thanks you so much for your feedback. Most info I've gotten in ages.
T4 at 14.5 with ref range of 10.5 to 20.
T3 at 3.6 with ref range at 3.5 to 6.5
This sounds like I am within the normal range so I don't understand why my TSH is so high.
Nice to get some feedback. In fairness to my doc, she has sent me to an endo and he was very good for a long time but he's quite old now and should be retiring. I have been to others in the past but they didn't even want to take free T3 and T4 tests. It is very difficult to get a doctor here at all least of all one that has a clue about thyroid problems. I did see one a few years ago that has a woman's clinic but she was $300/hr and I couldn't afford her for long. She did help me regulate my other hormones with estrogen but they thyroid problem is more complex and it would have taken several more visits I couldn't afford. My doctor is quite knowledgeable and willing to work with me. The problem is that when I increase the dosage I have alot of symptoms including heart palpitations. I am waiting to see a cardiologist now to be sure there isn't damage. I just went through some months of trying to take T3 and have been unable to tolerate it even at low dosages. I am reluctant to take anything to jazz up my system as I am already so speedy feeling. Speedy but exhausted if that makes any sense. My diet is excellent. I rarely eat red meat and have lots of fruit and berries and nuts. Also I take Vit D, calcium/magnesium, vit E and alot of omega oils. I eat cold water fish at least 3 times a week. Thanks for the feedback.
T3 at 3.6 with ref range at 3.5 to 6.5
This sounds like I am within the normal range so I don't understand why my TSH is so high.
Nice to get some feedback. In fairness to my doc, she has sent me to an endo and he was very good for a long time but he's quite old now and should be retiring. I have been to others in the past but they didn't even want to take free T3 and T4 tests. It is very difficult to get a doctor here at all least of all one that has a clue about thyroid problems. I did see one a few years ago that has a woman's clinic but she was $300/hr and I couldn't afford her for long. She did help me regulate my other hormones with estrogen but they thyroid problem is more complex and it would have taken several more visits I couldn't afford. My doctor is quite knowledgeable and willing to work with me. The problem is that when I increase the dosage I have alot of symptoms including heart palpitations. I am waiting to see a cardiologist now to be sure there isn't damage. I just went through some months of trying to take T3 and have been unable to tolerate it even at low dosages. I am reluctant to take anything to jazz up my system as I am already so speedy feeling. Speedy but exhausted if that makes any sense. My diet is excellent. I rarely eat red meat and have lots of fruit and berries and nuts. Also I take Vit D, calcium/magnesium, vit E and alot of omega oils. I eat cold water fish at least 3 times a week. Thanks for the feedback.
I feel so sorry for you...With numbers like that you are doing great to have the energy to log onto medhelp. You need to take control now. AS hard as it is to find another Doctor, you must. I have been there with the Doctors. In fact, I am still there. It is a constant battle. I have even let a few go. Remember , The Doctor provides a service, and is getting paid to PERFORM. You should not be walking around with a TSH of 17.6 if the one you have was performing . It sounds like to me you are not converting properly. Find a Endo...One that is not just a Diabetic Endo... One who actually treats complex Thyroid .. This can be difficult and even then, you will most likely have to work out the right amount of meds on your own.
I can relate to the Mistrustful, Frustrated and the Scared all to well. The first thing you do is TAKE CONTROL. This first step, is the greatest in the complete healing process. Keep us posted on how you are doing. I wish you the best. I would also try diet as a means of speeding up your system. Eating foods like Rassberries, bluieberries and try L-Carnitine for energy. Good Luck.
I can relate to the Mistrustful, Frustrated and the Scared all to well. The first thing you do is TAKE CONTROL. This first step, is the greatest in the complete healing process. Keep us posted on how you are doing. I wish you the best. I would also try diet as a means of speeding up your system. Eating foods like Rassberries, bluieberries and try L-Carnitine for energy. Good Luck.
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You say that increased meds often result in immediate hyper symptoms. I would not expect that from a small increase of T4 med, which is a much slower acting med than T3. So, several comments about that. I am not well versed in adrenal issues, but it might be a good idea to make sure about that by getting a 24 hour saliva cortisol test. In addition, some of our members have had similar reactions to increased meds and their doctors prescribed low doses of beta blocker meds to deal with the palps, until they became used to the medication levels. You might get some good info about that from goolarra.
On the possibility that some of your symptoms are due to deficiencies in areas that frequently occur with hypothyroidism, you should also get tested for Vitamin A, D, B12, iron/ferritin, zinc, selenium, and RBC magnesium. Also, be aware that test results that are just in the low end of the ranges for these tests are frequently inadequate, so may have to be adjusted above midrange.