Aa
no dose thyroid type or dose seems right
This has gone on for 22 years since RAI. Has this happened to any of you? I get hyper attacks and hypo attacks. I am euthyroid for about 3 days per month (or parts of these days) no matter what dose. I do not have Hashimotos; I had Graves, then RAI, then the search for a dose and type of thyroid that worked. Every day since 1992 I've written down the dose so I can correlate results and this helped me fine tune the dose sometimes, but it never stays right.
In these 22 years I have been on Synthroid, Eltroxin, Cytomel, compounded T3, Armour, and Erfa, and some combos of these. I live in Canada so other brands are not available.
I have tried various changes in diet and exercise and vitamins - everything - to no avail. At one point (1997-2006) I was on Xanax for the tremor and anxiety which I now believe was always thyroid, not mental or psychological, because it always came out of the blue no matter what the stress level. I gradually reduced it to nothing and took none for 6 years. Then this year my anxiety has come back and I have started taking Valium in a low dose, as needed.
After a severe and unexplained hyper attack on my long term 100-Eltroxin + 10-Cytomel in 2012, I went on Erfa for 2 1/2 years, patiently starting at 15 and increasing gradually to as high as 150, but I began to have very poor results with every dose, and the endo let me add some T4 (T3 always sky high, T4 very low; I thought that was the problem). I had blood tests every 3 months. Every time he changed the dose or type it still did not help. I even went to T4 alone for a while as I suspected the T3 in the Erfa was too high. Did not help. I still get hyper attacks on T4 alone, and reading my old notes, I did from the very beginning (late 1990s).
My usual pattern is: 2 hours after taking any dose I have a hyper attack (sometimes just heavy tremor, sometimes just increased heart rate, sometimes both). These last 3 to 7 hours on average. I live with it, but it often hampers my ability to function. It is huge amounts of adrenaline. But sometimes I am euthyroid all day, and have an attack at night, causing insomnia.
My cortisol test a few months ago was normal. My ferritin was normal. My endo gave me testosterone and Estrace to try, as he felt something else is causing the upheavals, but I don't feel any better with the Estrace and will not use the testosterone which has warnings on it that it's not for women at all. I get my blood test this week and see him after. My last test results in Aug. are as follows:
F T4 - 10.4 (10.5-20.0)
F T3 - 5.9 (3.5-6.5)
TSH - 0.64 (0.27-4.2)
On the day of that test (and I did not take the thyroid before the test),I had been taking 120 (2 grains) Erfa for 3 months, sometimes taking 60 when I was too hyper. His last recommendation was to take 60-Erfa plus 50-Synthroid. I did this since August, with a mixed bag of results - plenty of hyper and hypo attacks, leading to my not even knowing what I should take. Today I just took 1 1/2 grains (90) Erfa; no T4, and had the hyper tremor start about 3 hours later.
I am writing in this forum which I have read a lot for tips, in case someone might have a suggestion I have not heard of yet. I am grateful for any reply.
In these 22 years I have been on Synthroid, Eltroxin, Cytomel, compounded T3, Armour, and Erfa, and some combos of these. I live in Canada so other brands are not available.
I have tried various changes in diet and exercise and vitamins - everything - to no avail. At one point (1997-2006) I was on Xanax for the tremor and anxiety which I now believe was always thyroid, not mental or psychological, because it always came out of the blue no matter what the stress level. I gradually reduced it to nothing and took none for 6 years. Then this year my anxiety has come back and I have started taking Valium in a low dose, as needed.
After a severe and unexplained hyper attack on my long term 100-Eltroxin + 10-Cytomel in 2012, I went on Erfa for 2 1/2 years, patiently starting at 15 and increasing gradually to as high as 150, but I began to have very poor results with every dose, and the endo let me add some T4 (T3 always sky high, T4 very low; I thought that was the problem). I had blood tests every 3 months. Every time he changed the dose or type it still did not help. I even went to T4 alone for a while as I suspected the T3 in the Erfa was too high. Did not help. I still get hyper attacks on T4 alone, and reading my old notes, I did from the very beginning (late 1990s).
My usual pattern is: 2 hours after taking any dose I have a hyper attack (sometimes just heavy tremor, sometimes just increased heart rate, sometimes both). These last 3 to 7 hours on average. I live with it, but it often hampers my ability to function. It is huge amounts of adrenaline. But sometimes I am euthyroid all day, and have an attack at night, causing insomnia.
My cortisol test a few months ago was normal. My ferritin was normal. My endo gave me testosterone and Estrace to try, as he felt something else is causing the upheavals, but I don't feel any better with the Estrace and will not use the testosterone which has warnings on it that it's not for women at all. I get my blood test this week and see him after. My last test results in Aug. are as follows:
F T4 - 10.4 (10.5-20.0)
F T3 - 5.9 (3.5-6.5)
TSH - 0.64 (0.27-4.2)
On the day of that test (and I did not take the thyroid before the test),I had been taking 120 (2 grains) Erfa for 3 months, sometimes taking 60 when I was too hyper. His last recommendation was to take 60-Erfa plus 50-Synthroid. I did this since August, with a mixed bag of results - plenty of hyper and hypo attacks, leading to my not even knowing what I should take. Today I just took 1 1/2 grains (90) Erfa; no T4, and had the hyper tremor start about 3 hours later.
I am writing in this forum which I have read a lot for tips, in case someone might have a suggestion I have not heard of yet. I am grateful for any reply.
Since my original post I reduced the dose to 60 mg Erfa for a week and I had no hyper attacks. I did better in general. Though slightly sleepy sometimes, I found this preferable to hyper attacks where I can't function. However, I need energy and I felt I should increase it, so today I increased it to 90, which threw me into a hyper attack. I decided to do some research. I did a lot of reading of forums, both old and new posts and I saw that my problems are very, very common. Half the posts even going back ten years, I could have written. What really stood out was the sudden worsening of symptoms when a person got a new batch and the strength was different. When I did a search on Erfa, I was shocked to see a lot of posts on other thyroid sites from people who found their Erfa had changed in 2014 and was making them sick. It didn't even look the same although the manufacturer claimed nothing had been changed. Still, apparently there are lots of people who started having horrible symptoms with their latest batch. Some of them quoted the same expiry date which mine has: 10/16. I looked at mine and sure enough they had the same new shiny look while the older batch from 2013 which I had still in my pill cutter are matte.
I've been trying to be a detective all along and work with the doctors and improve my health in any possible way. I gave up tap water and started with supplements and all antioxidant foods. I went back to my exercise since I got over the 8 weeks of bronchitis. Today I reflected on when I last really felt OK and it was in late 2013. Just like the others who had their Erfa refilled sometime in early or mid-2014. Now if it's the pills, I am really angry. I intend to go back to the synthetic T4-T3 combo I was on before, and see if there is improvement. I do not trust Erfa anymore. They lie in their email responses to angry customers. Synthroid and Cytomel may not be perfect either but I just have a feeling they might be more stable batch to batch than this desiccated thyroid, now made in Spain. I will post updates after I've been off it for a while.
I've been trying to be a detective all along and work with the doctors and improve my health in any possible way. I gave up tap water and started with supplements and all antioxidant foods. I went back to my exercise since I got over the 8 weeks of bronchitis. Today I reflected on when I last really felt OK and it was in late 2013. Just like the others who had their Erfa refilled sometime in early or mid-2014. Now if it's the pills, I am really angry. I intend to go back to the synthetic T4-T3 combo I was on before, and see if there is improvement. I do not trust Erfa anymore. They lie in their email responses to angry customers. Synthroid and Cytomel may not be perfect either but I just have a feeling they might be more stable batch to batch than this desiccated thyroid, now made in Spain. I will post updates after I've been off it for a while.
COMMUNITY LEADER
Typical dosing when one is on a med with T3 is half in the morning and half around noon. If you add extra T4, that would be taken with the morning dose.
It's generally recommended that T3 not be taken after 3:00 PM because it will interfere with sleep, but of course, that depends on the individual schedule.
It's generally recommended that T3 not be taken after 3:00 PM because it will interfere with sleep, but of course, that depends on the individual schedule.
Please post your "normal' cortisol and ferritin test results and their reference ranges shown on the lab report.
Thank you for your reply. I really appreciate your input. I have tried splitting my doses and I kept a record. This is how I did it the first few months I was on Erfa, as it was recommended. The problem was that the second dose would often keep me up or do nothing. This is why I went back to single dosing, so any effect would be gone by bedtime and I could sleep. Now, I tend to get so hyper that I can't even use coffee every day. The half life of caffeine is 5 or 6 hours and I have to take it ten to twelve hours before bedtime and no more, so it will wear off. Previously I could have 2 or 3 coffees or teas a day without any hyper effects so this is new. Signs point to being hyper on any dose I've been on the past year, yet I was hypo the first year on doses of 45 and 90, and that is not ok either. What I wanted was a happy medium.
In the past I tried 3 equal doses, say 30, 30 and 30 spread throughout the day; and I tried taking say 60 in the morning and 30 in the afternoon; 60, 15 and 15, and so on. Two doses, and three doses. But I didn't feel any better doing it that way, plus with my schedule I forgot the second dose a lot and ended up being and staying hypo.
I have questioned whether the binders and fillers have hurt me, as they have cornstarch, sugar, acacia and that kind of thing (each type of pill is slightly different) and I am sensitive to those in food. But the tiny amounts in the pills are supposed to be harmless and I was hoping they were not the culprit. The only way around it is to get T4 and T3 compounded with no fillers, and I was going to ask the endo when I see him next if I could do that.
Anyway, my dr.'s last order of 50 T4 + 60 Erfa didn't work for me. He based that on my previous 3 months doses and the blood tests. Therefore we have to determine what to try next.
In the past I tried 3 equal doses, say 30, 30 and 30 spread throughout the day; and I tried taking say 60 in the morning and 30 in the afternoon; 60, 15 and 15, and so on. Two doses, and three doses. But I didn't feel any better doing it that way, plus with my schedule I forgot the second dose a lot and ended up being and staying hypo.
I have questioned whether the binders and fillers have hurt me, as they have cornstarch, sugar, acacia and that kind of thing (each type of pill is slightly different) and I am sensitive to those in food. But the tiny amounts in the pills are supposed to be harmless and I was hoping they were not the culprit. The only way around it is to get T4 and T3 compounded with no fillers, and I was going to ask the endo when I see him next if I could do that.
Anyway, my dr.'s last order of 50 T4 + 60 Erfa didn't work for me. He based that on my previous 3 months doses and the blood tests. Therefore we have to determine what to try next.
COMMUNITY LEADER
Rule of thumb for FT4 is mid range - your is actually below range, so I agree that you could benefit from addition of some T4. Rule of thumb for FT3 is upper half to upper third of its range and your FT3 is at 80%, so it's plenty high. You might be able to decrease your dosage a little bit.
My biggest question would be whether you take all of your ERFA in a single dose every day or if you split it into multiple doses. Since T3 is fast acting and peaks within a very few hours after taking it, most of us find that splitting it into more than one dose (typically, 2) throughout the day prevents that spike that causes those hyper symptoms soon after taking it.
A reaction within a couple hours after taking a T4 only med would most likely be from fillers/binders/dyes since it takes T4 med several weeks to reach potential in your blood, so what's there now, isn't what you took this morning; it's what you took at least a couple weeks ago.
Every manufacturer uses different fillers/binders/dyes, so many patients find that simply changing brands/manufacturers eliminates these reactions. When taking Synthroid, the 50 mcg tablets are white and have no dye, so many people find that they can take those, when they can't take others.
My biggest question would be whether you take all of your ERFA in a single dose every day or if you split it into multiple doses. Since T3 is fast acting and peaks within a very few hours after taking it, most of us find that splitting it into more than one dose (typically, 2) throughout the day prevents that spike that causes those hyper symptoms soon after taking it.
A reaction within a couple hours after taking a T4 only med would most likely be from fillers/binders/dyes since it takes T4 med several weeks to reach potential in your blood, so what's there now, isn't what you took this morning; it's what you took at least a couple weeks ago.
Every manufacturer uses different fillers/binders/dyes, so many patients find that simply changing brands/manufacturers eliminates these reactions. When taking Synthroid, the 50 mcg tablets are white and have no dye, so many people find that they can take those, when they can't take others.
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