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Hyper symptoms - help reducing dose

Hi

I was started on T3 a couple of months ago - a dose of 20mcg which caused some surprise on this forum when I mentioned it. My hypo symptoms improved pretty quickly  but a couple of weeks ago I started to feel rough again. Pretty much the same symptoms as before but with an insanely fast heartbeat.

I had my bloods done and the results suggest (I think)  I'm now Hyper:
TSH 0.11 (0.27-4.2)
T4 17.1 (12 - 22)
Free T3 9.1 (3.1 - 6.8)

My Endo has been away and I am waiting for her reply; in the meantime I wonder if anyone here could weigh in with an opinion?

I have reduced my Levothyroxine from 150mcg to 125mcg and reduced the T3 from 20mcg to 10mcg. Does this sound reasonable?

I would be grateful if someone couple confirm that the following symptoms are consistent with being Hypo : anxiety. prickling feeling in hands and feet, occasional light-headedness, thumping and fast heart, fullness and discomfort in chest. I have a feeling they are, I only ask because I am due for my yearly checkup on my Bicuspid Aortic Valve next week and I'm getting a little stressed out wondering if the symptoms are due to this condition deteriorating. A little reassurance goes a long way! My T3 is clearly high - would the reading above be sufficient to make me feel the way I do.

As usual, my profound thanks to the good people who maintain this forum, and to anyone who takes the time to reply.

Also, could anyone give me an indication how long before I start to feel better?
Best Answer
Avatar universal
Please remember that T3 is 4X stronger than T4, so a 50% reduction is a lot. I had a bad reaction when mine was reduced by 50%, a return of symptoms within 5 days....and that was without lowering my T4 at the same time, as you have done.

You have now gone from 230 mcg total thyroid hormones to 165 mcg. total. That is quite a significant reduction. I would have suggested starting by reducing the T3 to 15 mcg for a week or so, and then going to 10mcg. if you didn't feel better. It's best not to jerk your body around by making additions or reductions that significantly affect your total thyroid hormone. Just my opinion, but based on my experience.

Best of luck.
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Avatar universal
My GP seems quite happy to prescribe Cytomel; in the UK we pay about $12 for our prescriptions so it doesn't work out too costly (although I guess if someone has a number of different medications the costs would rack up pretty quickly). About the only good thing that comes out of this condition is if a person needs Levothyroxine all their  other medications come without charge!

I'll bear in mind your comments about the generic drugs so that if the issue does come up, I can (I hope) stand my ground.

It is interesting to read about HRT as my endo specialises in Bio-identical HRT and that was the first thing she wanted to put me on. She told me that it would actually help the thyroid condition and for a while it really did relieve my symptoms. However as I don't really have any unmanageable menopause symptoms I now question its appropriateness given all the negative publicity in recent years.

You've really had a long slog with this haven't you? I sailed through the first 7 or 8 years on Levothyroxine - things have only gone pear-shaped since the menopause. No surprise there I suppose. Oddly enough, I  also get the occasional migraine - no headache, just the aura.

I do take various supplements including thyroid boosting support. It has zinc, iodine, selenium, B6, folic acid etc. I get cholesterol checked but I've never had bone density; thanks for the tip.

Our family knows only too well about autoimmune disorders - my poor brother suddenly contracted Type 1 diabetes at the age of 36 (coinciding with the birth of his first child - a stressful event by anyone's standards I guess). My mother, also has various auto-immune disorders.

Congratulations on getting all your labs normalised - it must be a huge relief. Thank you also for the wealth of information and advice. I will indeed keep you posted!
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Avatar universal
Barb is absolutely correct about the TSH.  when you are on T3 it is highly likely that TSH will be suppressed below the norm. Like Barb, mine is undetectable and I don't feel well if it is higher.

I'm SO jealous that the generic T3 works for Barb ! Cytomel is expensive. Barb, do you think that could be because you don't have to take a lot ? Also, valdab, Handy Tip : If you take generics, it is best to have your GP write your prescriptions for a generic from a specific manufacturer. That is your best shot at drug consistency because each manufacturer is slightly different in their manufacturing process and fillers. In the US, MYLAN is the company that had the original generic contract and are most consistently monitored. I found this information through Google and Wikipedia.. Also, once you reach your optimum dose, if you can order your medication 3 months worth at a time or more, all of the pills will likely come from the  same batch, further increasing the likelihood of consistency.

Another thing of which to be aware....if you take estrogen in birth control pills or HRT, this will effect your levels and perhaps cause you to need to take a higher dose, as estrogen binds the T3. That seems to be my situation, and is reflected in fluctuations in menstrual bleeding when my T3 dose is changed. Before they put me on any T3/T4 therapy, I was having unusually heavy bleeding, which normalized with hormone replacement  and has now mostly ceased, which is appropriate for my age. I suspect that the dyslexic typing...and you're right, I haven't read much about that here n the Forum but have friends who notice it...comes from hormone imbalance and perhaps from the lack of seratonin under a hypo situation. All I know is that it was one of the most dramatic symptoms that returned immediately when my meds were lowered, and was accompanied by silent migraine with visual auras. After the migraine stopped, the dyslexia continued, and I have it now with too much T3. I have also read scientific studies that state that both Alzheimer's and Parkinsons's symptoms are mimiced by untreated hypothyroidism....especially with myxededmis coma. The first time this happened, along with extreme light sensitivity, was following a car accident with damaging whiplash and a herniated disc in my neck. I suspect that my pituitary or hypothalamus was damaged and precipitated my thyroid condition.There's plenty of science behind my theory, but endos refuse to discuss it. I had two more incidences of whiplash after that, as well as exposure to environmental toxins. And thyroid and other autoimmune disorders run in my family. In your own case, you might examine factors such as these. However the bottom line, no matter what the cause, is the FREE testing to optimize your levels as well as metabolic labs to pinpoint deficiencies in Vit D, ferritin and iron, potassium and calcium and magnesium, selenium. changes in cholesterol and glucose levels...all of these things are effected by thyroid deficiency, as is bone density, and provide a good map of how your thyroid is affecting the way your body is working. Supplementation makes a noticeable difference in how you feel and how the thyroid supplementation is used.

In US, your medical records are yours by law, but it's still hard to squeeze 'em out  here too. If it is also your right in the UK, if you sign a release of records form, they MUST give them to you. I had my docotor write it inot my chart. Learning to read my labs and monitoring them has been essential to my care. My PCP does NOT have time to study them and make the correlations, I do. And I can use my knowledge of the labs to PROVE to herand endos that I need medication for my thyroid, even with a low TSH. ALL my metabolics were way off and my cholesterol was rising for no dietary reason. ALL my labs have now normalized and the ONLY difference is my thyroid meds. How else can they explain that ?

I hope Dr. Arem's book will be helpful, it was very reassuring to me. Your endo probably wanted to reduce your T4 because it metabolizes to T3, adding to your load. But because the T4 is in the middle of the range, I doubt that was a problem. You can have labs at 4 weeks instead of the usual 6 with T3, as far as I know.

Best of luck. Let us know how you progress !

Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
For many/most people taking a T3 medicine, whether it be cytomel or a dessicated med, TSH is usually very low and should NOT be used as an indicator for adjusting doses.  I'm on 5 mcg generic T3 and my TSH has been undetectable, for nearly 4 yrs.  

For many of us, TSH is totally irrelevant.
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Avatar universal
Thank you so much for taking the time to share your story. You've been through a truly crippling time; I'm very pleased to read that you are starting to improve.

Thanks for the link to Dr Arem; I will buy his book.

It sounds like you have a very good GP (PCP); how extraordinary that Endos appear to be woefully ill-equipped to deal with this condition. My GP is now very willing to listen to me and is quite happy to test my bloods every couple of months. It's still not easy squeezing one's results out of the reception staff (that's a UK thing I think), but I now feel a lot more confident about insisting I have a right to see them!


One thing in particular jumped out at me - the dyslexic typing. For several years I have being doing exactly that without making the connection - I've Googled it to no avail, I've tried concentrating harder, I've slowed down; speeded up - nothing helped. At the back of my mind lurked the suspicion that it was the beginnings of Dementia (indeed I've even taken an online test, which fortunately didn't throw up anything untoward). What untold relief to read that it can be connected to my turbulent thyroid!!

For some reason my Endo was very keen to reduce my Levo and told me to reduce it to 125 (from 150) when I started the T3. I felt pretty ghastly after a couple of weeks so I went back up to 150mcg and felt fine for a few months. I have returned to this dose so now I have in effect just reduced my T3 by 25%.

I realise that the TSH takes about 6 weeks to stabilise after a change in medication; am I correct in thinking that the T3 meds show up much more quickly in the blood? How soon should one get tested  for FT3 after reducing Cytomel?
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Avatar universal
When I first develpoed a thyroid problem I was on 75 mcg of Syntroid "to try to shrink the nodules on my thyroid" which did not relieve symptoms and in fact allowed myxedema and other symptoms to worsen. That endo said I was not hypo because my TSH and Free T4 were "within norms"....both of them at the very bottom. I begged my PCP to let me try adding T3 after I read about it, and when my depression and anxiety had caused me to consider ending my life. NO antidepressants had worked, they made me worse because as it turns out, the problem was my thyroid hormones being low and thus preventing seratonin from circulating properly in my brain.

My STARTING dose of Cytomel was 25 mcg in addition to the Synthroid. This was probably due to my PCP prescribing it and not being fully informed, but luckily it was right for me. On the Cytomel manufacturer's website, they suggest starting with 5mcg and raising the dose by 5 mcg at a time, fairly rapidly(like after a week or two as opposed to the 6 weeks for usuall labs) until symptoms abate. My grosser symptoms such as depression, night sweats, sleeplessness, and panic attacks went away within 3 days. The Synthroid was then raised to 100 mcg and changed to generic T4 which worked fine for me and still does. I lost 15 lbs. in 3 weeks, obviously myxedema weight, and then gradually another 5 without change in diet or exercise. My dry skin and peeling fingernails improved and my hair started to grow back. I had a return of energy and positive thinking.

I continued to do well for about a year, until 4 months after the pharmacist changed the Cytomel to a generic, when I developed all the hyper symptoms you describe, and like you, panicked and cut my T3 in half with my doctor's knowledge. The hyper symptoms went away almost immediately but then I rapidly developed crushing severe depression, brain fog, dyslexic typing, massive hair loss, rash, severe dry skin etc. It has taken me a year and a half to even approach the good results I had before. My PCP panicked and started sending me to a series of endos, who because of my low TSH insisted that I wasn't hypo and lowered the meds even more while giving me obsolete lab tests and refusing to consider my symptoms.

Seeing what this did to me physically.....I gained 15 lbs. back in 3 weeks after the initial lowering of T3 in half...my PCP agreed to work with me based on my research ( I take scientific studies to her, which she generously takes the time to read) and Dr. Ridha Arem's book, which I also took to her. She tests my FREEs every 6 weeks as we try to find my optimum dose. The myxedema now refuses to go away, which sometimes happens if your metabolism is jolted back and forth too much.

The FDA allows a plus-or-minus variation in the strength of generic drugs, as well as the use of cheaper less absorbable fillers, which can include calcium that binds thyroid hormones anyway. This isn't so much of a problem with T4 as it builds up in the body, but I think it is wrong for a rapid-acting hormone like T3. Others, however find it is ok for them ! I know now that I have an rT3 resistance problem, which is why I can handle a large-ish dose of T3. I have gone back on Cytomel and am slowing getting better. The difference between the brand and the generic was very noticeable to me. My Cytomel was recently raised from 37 and 1/2 mcg to 50mcg due to problems splitting pills. I can feel that it is slightly too high, and am being tested next week. I will post my labs at that time.

I think it is absolutely essential to be under a physician's care, especially while stabilizing on your meds. This does NOT have to be an endo. Even my new gynecologist was more informed about the most advanced thyroid research than any endo I've ever seen. Your levels will be entirely individual, as will the reasons for your condition. The only way to reach the level at which you feel well is with the guidance of the Free T3 and Free T4 tests and the monitoring of your symptoms. I assume you have been tested for thyroid antibodies.

Looking at your post, your  TSH is slightly depressed and I suspect that lowering your T3 will put it back in the normal range. My TSH is almost undetectable, but my FREEs are now in a good part of the normal range....about 1/2 or slightly higher for T4 and about 2/3 - 3/4 for T3 while monitoring for symptoms. I can't stress enough that this is HIGHLY individual. The level that you post for your FREE T4 is 17, exactly in the middle. Based on this, I would not have lowered the T4 had it been me. I would have started by lowering the T3  5 mcg at a time, watching the FREE T3 and TSH levels and also the effect, if any, on FREE T4. Many members have stated that they feel their best witth their TSH at around 1.

Good luck on this journey....seems like you're getting close ! All the best.
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Avatar universal
I agree with the above...you're moving in the right direction, but very small changes in meds (especially T3) can cause big changes in symptoms and status.  Baby steps...  

I would guess that 20+ mcg of T3 is a fairly unusually high dose.  From what I read, most people seem to settle in at 5-10 mcg.  There is the occasional person who takes more.

I think all the "regulars" I know on this forum consult with a doctor, not necessarily an endo, but a doctor with whom they work well.  Of course, we all have our own opinions, so we're not easy on our doctors.  I'm really happy to have found an endo that I like and who agrees with me for the most part (at least on the issues that are important to me).  I always strongly encourage people to make the effort and find a doctor who they can work with.  Who said "the physician who treats himself has a fool for a doctor " (or something like that)?  Well, that goes for patients as well!

Good luck...hope the reduction has helped your tachy and palps.  
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Avatar universal
Thank you so much for your advice - it does make good sense. I have just  taken another 5mcg. I'll remain on 15mcg til the end of next week then  I'll look to reducing it again based on how I feel.

I must admit I hadn't done the calculation and you're right - such an extreme drop is unwise. I think I was so desperate to slow my heart down and try to slough off the crushing depression I didn't think it through. I have also had it in my mind that my starting dose is pretty high. Is it common for people to take 20mcg (or more) I wonder?

This forum is a Godsend but I'm curious about one thing - do the knowledgeable people here self-monitor their condition or do they still refer to an Endocrinologist?
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649848 tn?1534633700
COMMUNITY LEADER
I agree with gimel that your dosage should be decreased.  

Yes, the symptoms you mentioned are consistent with being hyper, but don't forget that some symptoms can apply to either hyper or hypo.

I remember your high starting dose of T3 med.  I would have been one that was surprised at such a high starting dose.  I'm not surprised that it caused you to go hyper.  

I do hope that by cutting back on the T3 med, you are starting to feel better.  
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Avatar universal
Yes, your Free T3 level is too high.  Your change in dosage is directionally correct.  With the T3 dosage change,  you should start noticing some improvement in hyper symptoms fairly quickly.  The change in the T4 med will take longer to show up in blood tests.  In 4-6 weeks it would be a good idea to get tested again for Free T3 and Free T4, along with the TSH.
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Avatar universal
I would be grateful if someone couple confirm that the following symptoms are consistent with being Hypo *sorry - that should be * Hyper*
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