I'm confused...I thought you were taking 5 mcg Cytomel in the morning and another 5 mcg early afternoon.
Only you know how you feel; I can only look at your labs and say that it doesn't look like you should be lowering either.
What's your resting HR?
I have what I call "TSH guilt". I told you that my TSH stays around 20.0, and I KNOW I have to ignore it, but it still bugs me! LOL
Do you have a link to the articles you found? I'd love to read them.
Hi! So then, palps about 4 hours after last dose of 1.25 mcg... And ONLY after eating (so frustrating), from the Cytomel? Should I lower my dose? Or maybe lower my Synthroid dose?
And also, HR of 130ish while walking (again, brisk, uphill mostly), not safe?
So confused. :(
I found some articles today re: TBII and TSH suppression. I guess I just have to trust that TSH is useless on me huh? Or should I be 'listening' to these symptoms and lowering dose? It's hard to say, since I'm still feeling hypo most of the time.
I don't thin it's just the contrast from your previously very low HR to your current HR that you're feeling. Yes, sometimes people who have had very low HR FEEL like their HR is fast when it gets back to normal, but yours really IS high at 130. It shouldn't be that high, and it is not normal for Cytomel.
There are other issues besides pituitary tumors. I have pituitary resistance to thyroid hormone, which keeps my TSH around 20.0...obviously NOT suppressed! Trauma (blood loss) can exacerbate autoimmune response. Thyroid antibodies can be "somewhat elevated" (a term never defined) if you have another autoimmune disease. So, lupus could explain your "in range", but "somewhat elevated" results.
TBII blocks TSH from binding to receptors, inhibiting thyroid hormone production and causing hypothyroidism.
Palps are tricky because they can be symptoms of both hypo and hyper. So, the question is are the palps due to the Cytomel, per se, or to the drop in FT3 levels that occurs several hours after taking it? Technically, if they happen within the first 3-4 hours after taking it, I'd be more likely to attribute it to the Cytomel, itself. If later, it might have more to do with the drop in FT3 once the T3 is neutralized???
Hi again, goolara! Thank you!
My doctor has seen the antibodies results. At first he said normal, then he said TBII was blocking TSH receptors, then he said Hashi's. I honestly got the impression that he was just grasping at straws, since I am a weird case. However, I DID read TBII can falsely lower TSH reading. Is this possibly what is happening in my case?
Anyhow, doctor called again today and said to lower Synthroid to 75mcg. I outright refused. I said not until we run more tests, as I feel that my TSH is falsely low. I'm waiting for yet another call back now (sigh).
Also, my pharmacist said essentially the same about T3… it's like a "multivitamin", as your body makes/needs it anyway, and you're just supplementing what your body is not producing anymore.
So, my other question is... after about 5-6 hours or so… any palpitations I feel are NOT from Cytomel?
Hi flyingfool, thank you for the advice!
I usually split my Cyto dose in two… 5 mcg at 8-9AM, 5 mcg at 1 or so. My anxiety has been getting the best of me, which is probably from the Cytomel (and all the bad doctoring lol), but I am getting better at managing it and recognizing the Cytomel is helping a lot. The only thing I will say is that my pulse shoots way up when I even go for a light walk (like 130bpm). Normal for Cytomel? Or maybe I was just so used to having a pulse of 35-40 for so long, before treatment!!
I actually had been the one who suggested a possible pituitary problem, but the doctor said it was unlikely. He ended up running the prolactin and some other sex hormones, which were suppressed -- but he said normal, due to me being on birth control pills. Are there other pituitary issues besides a tumor? Could the blood loss of surgery have damaged things? I also have been previously diagnosed with lupus. Could this be attributing? In general, the doctors think I have an auto immune response. I am not sure where my doctor is getting Hashimotos…
But The TBII antibodies did come back high. What are those?
Thanks!!
You had all three of the tests for antibodies, and they were all negative. So, it doesn't look like autoimmune thyroid disease to me (not a doctor, of course). Had your doctor seen these results when he said that?
This happens to a lot of people. TSH is suppressed by meds, and then their doctors want them to reduce dosage, which makes them feel sick again. Your FT3 and FT4 are both on the low side. TSH is NOT (for whatever reason) accurately reflecting your FT3 and FT4 levels. You don't have hyper symptoms. Don't let him reduce your meds! (Easier said than done, I realize.)
Cytomel goes to work as soon as it gets into your bloodstream, depending on your metabolism, probably in less than half an hour. It peaks at about 3 hours and is mostly gone a few hours after that. It all depends on your metabolism, but it doesn't hang around long.
T3 is more potent than T4, and it's faster acting, but it's not really a "drug" at all. It's an exact chemical replica of the hormone your body would be converting if it were able to. It's a little trickier to use than T4 because of its fast nature...
FT4 should have stabilized at 4-6 weeks. Sometimes, though, FT3 will continue to rise for a while afterwards as conversion ramps back up.
Oh also -- if I have been on Synthroid for about 12 weeks or so now, at 100mcg, will my FT4 continue to rise? Or has it "stabilized" now?
Hi! Thank you for your very informative, and stress-reducing, answer! lol
My doctor said he looked at pituitary, and thinks it is NOT that. Though we have never done any imaging or anything. He basically ran a prolactin and did some other tests that he said "rule it out". Though I did have surgery before I started getting sick, and I lost blood during surgery. I wonder if that didn't damage something.
But anyway, he thinks it is auto-immune in nature. From what I have read, TSH can also be falsely reflected by antibodies?
However, he wants to lower my dosage in 6 weeks if TSH doesn't come up. I'm not sure how I will feel about that. :( I feel sick when I lower dosage. I tried coming off Cytomel and did not feel well at all.
I do split my Cytomel dose. I have been taking 5mcg at 8AM, and then 2.5 or another 5 (depending on how I feel) around 1PM. Do you know how quickly Cytomel works, btw? I have heard conflicting answers and I am trying to get my head on straight about it.
If I take 5 mcg of Cytomel at say, 8AM… by what time is it actually working in my body, and by what time is it completely depleted?
Also, is it a dangerous drug??
Thanks a bunch!
NO! The very suppressed TSH is not a problem. TSH is nothing but a messenger from your pituitary to your thyroid to tell it to produce more thyroid hormone. TSH, per se, causes NO symptoms.
Your FT4 is still on the low side, at 33% of range. 50% is the guideline for FT4, based on where many of us found symptom relief. FT3 is right on the floor of the range, very low of the 50+% guideline for FT3. According to those guidelines, you could use an increase in meds.
Do you split your T3 into more than one partial dose?
I would guess that you might have a pituitary issue going on (perhaps secondary hypothyroidism). Looking at your April labs, your TSH is very "normal", while your FT3 and FT4 are both below range. Your TSH should have been much higher. This is another reason that TSH should not be a concern for you.
Secondary hypo is actually a pituitary problem. Your pituitary doesn't produce enough TSH to stimulate your thyroid to produce enough hormone.
Anyone who is on T3 medication it is COMMON for TSH to be suppressed. It is almost the rule rather than the exception. The facat that your Dr doesn't seem to be aware of this concerns me.
I do not understand how your Dr can "rule out" pituitary issue when you have some pretty classic signs of it not responding correctly. Also your Dr seems to be attributing this to autoimmune condition yet the labs show the exact opposite. as you appear to show negative for Hashimoto's. So I'm not sure where your Dr. can reach these conclusions.
It is clear by your Dr's discussion to LOWER your medication while you clearly classically have Hypo (low) thyroid symptoms ONLY based on the TSH by the Dr's discussion about the need to raise your TSH. TSH is completelyinadequate to base dosage recommendations on. It is a screening tool at best and even at that not a particularly good one.
You are a perfect case as to how unimportant and inaccurate TSH is. As pointed out prior your first TSH if going solely by that alone would have been just about a "perfect" result. Yet both of the ACTUAL thyroid hormone in your blood was BELOW range. CEARLY your pituitary is not up to the task. I do not see how you could draw much of any other conclusion.
The fact that your Dr appears to not be aware that being on a T3 drug will almost certainly suppress TSH, especially with a person who was so clearly Hypo with an already moderate if not perfect TSH and would none the less have to understand that the TSH was going to decrease below the first test of 1.15 with adding thyroid hormone replacement especially one including 3 (cytomel) indicates to me that your best bet is to find another Dr. as this Dr. seems inexperienced or knowledgable about Thyroid. Which unfortunately is all too common if not the normal situation we all find ourselves in.
This may not be what you want to hear. But any Dr who bases dosages on TSH is almost 100% assured to keep you feeling VERY ill or on a roller coaster ride of hell.