Especially for those who do not have a thyroid-trained doctor or a competent doctor.
1.I now know that my gut instinct to not stop the carbimazole at 18 months when the doctor suggested it, was correct. Given my high TraB level, staying on carbimazole was the correct course of treatment. After 3.5 years on carbimazole, it came down to just above the high end of the range which is 1.5, my reading 1.8 still high.
2.Had I gone off carbimazole as the doctors suggested, I cannot imagine how bad my relapse would have been given my high TraB level, and to what extent it would have reactivated my TED. This is the damage inexperienced doctors can inflict.
3.Given how the disease is unfolding, it's 4 years since diagnosis, 4 years experiencing hyperthyroid ups and downs without guidance from an experienced thyroid doctor. Judging from the attacks becoming more sinister, it might perhaps be time to have the thyroid destroyed. I feel sad when I remember the periods of wellness and normalcy otherwise.
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ling
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Ling. where are you based? Uk? Which region? I’m in Bristol. Would be interested in chatting some more to share experience. I’m 5 years graves and still plodding in with carbo at present. Alex
Interesting post and information - but I am so sad to hear how you are feeling about things - you must be feeling worse to be thinking about getting your thyroid destroyed. What attacks are getting worse - is it your eyes?
I know how you feel about the periods of wellness though - I still think about that now 14 weeks post op and wishing for those times. Had a brief moment of feeling great when I started with the addition of Cytomel to my Synthroid last week but now feeling worse again - it seems 2 steps forward and 1 step back ...But I always hope tomorrow will be a better day... and also seeing endo today ... maybe dose change in order.
Back to you though - let me know how you are doing and thinking about you. Sending good thoughts and hugs 🤗
From the sound of it, titration for the hypo state is a lot more complex.
This post was around the time I "met" you when I was searching for answers after my latest attack on Jan 30th. You clarified for me regarding thyroid storm and I realised perhaps my Graves had run its course and it was time to have it zapped before I stroked out.
I'm still vacillating at the same point and the issue has taken a back seat with my mom's heart acting up and now due for surgery. Trying hard to keep a lid on the stress otherwise god knows what will happen : )
To be honest, I dread the thought of going hypo. I know it's gonna be worse for me : (
So glad you answered! First, I’m so sorry about your mom - and sending prayers your way for that. 🙏🏻
So my visit to endo - so he looked at my notes on latest meds over the last 2 weeks (he already added Cytomel to Synthroid) 2 weeks ago and what a difference!) but I still need a dose increase of both so we are trying changing each med one at a time in increments. I’m so sensitive to any micro change in dosage (I get hives) that he is proceeding very slowly - so now trying to figure out the right balance of Synthroid to Cytomel.
So I am still hypo but not as bad as before - and starting to see that I will get there eventually. The hardest part is that you feel great for 2-3 days, and then your body figures out you don’t have enough medication! It’s like two steps forward and one step back - the universe is teasing you and it is the pits.
I had a few days of bliss when Cytomel was added - and started to act “normally” and then I ran out of juice after 5 days and now feel exhausted.
The good news - I have a great endo who listens - and he works with me - so I’m going to get there eventually. This adjustment is tough - ugh - after 14 weeks I am so ready to get back to something resembling normal - but what can I do? I’m at my body’s mercy - and nothing I can do about it . I do miss having a thyroid - it’s not the same - but sometimes your body gives you no choice in the matter.
That said, ling - it’s still better than the awful palpitations, the constant anxiety attacks, my body buzzing like a taser is on me 24/7, the neck compression and high blood pressure . Being hypo after surgery is not exactly the same as being hypo with a thyroid - based on what I’ve seen on the posts here. It’s a tabula rasa - you are starting from scratch without any thyroxine once the residual clears your body after surgery after 2 weeks or so - and your Graves quiets down without all that extra hormone in your body.
I had a bad day just before endo visit - I had hit a low point and felt like I just wanted to crawl into a hole - but my husband reminded me that I’m so much better but can’t see it yet - and he’s right about that. In some ways, hyper was easier - I had unlimited energy - so I know what you mean when you say you think it will be worse to be hypo.
It’s such a tough decision for you about what to do - as I’ve said before, I wish I still had my thyroid - but I had no choice and in many ways feel better. It’s just that getting there is so slow!
Only you know how bad you feel - and what other things are going on that you need to manage first. Please take care of yourself and I’m thinking of you. Positive thoughts your way! 🤗
The energy crash was my reason at diagnosis, to avoid becoming hypo at all costs. But as you said, some times your body leaves you with no choice. I can only pray there is sufficient time for me to get my mother into suitable care before anything happens to me.
I don't get the part about the adding of the cytomel and then the body running out of juice. Do u not take the cytomel daily with the synthroid?
Do you still have high BP now?
I am really envious that you have such a fantastic doctor. That's how a doctor should be, helping the patient get better rather than a lot of the horror stories on this site.
Thanks for your good thoughts! Adding the Cytomel helped, but I am not on enough of either Synthroid or Cytomel. That’s why he is letting me gradually increase each one, but one at a time, so we can tell which drug is giving me what I need . So I increased Synthroid today and will leave Cytomel where it is. I’ll wait about 5 days - unlike many on this site, I feel it kick in then and know if I need to add more Cytomel or not and when during the day. BP is back to normal, thankfully.
Again, good luck with your mom - we took care of my husbands mom when my son was very young until we had to get her care eventually. I know what you are dealing with and it’s not easy. Wishing you well!
So Synthroid and Cytomel work in different ways. Synthroid is (T4) thyroxine that is absorbed in your tissues, and that’s why it takes so long for it to start working. Cytomel (T3) is thyroxine which is absorbed quickly and you feel it quickly.
I take synthroid in the morning, and then I take Cytomel in the afternoon . Synthroid takes you through the day at a steady state and Cytomel provides you with the boost you need if you do not convert your T4 to T3 in your own. In other words, If you have a working thyroid (no disease) your body will produce T4 and it will convert it to the active T3 by itself. That’s where you get your energy.
Most people can survive on synthroid alone because their bodies convert it to T3 without assistance. Many on our forum like me cannot do that - so we need both hormones to imitate the body’s natural function. For me, the Synthroid provides the T4 but doesn’t provide the conversion. The T3 provides me with the missing conversion that makes me functional.
So now the issue for me is to figure out the proportions of each drug I need to bring me to steady state. That’s a real challenge - it will likely take me another 6 months or so to get there - just because you need at least 6 weeks between blood work and you can’t change doses too often - you won’t get reliable results.
Also, I have issues with frequent dosage changes because I get hives when the Synthroid dosage is changed. They go away but it’s not fun. Last time I had a huge hive on my eye and it was shut for a few days. Anyway that should be my biggest problem 😂!
To hear u describe it, it sounds logical and not too difficult to medicate. Why do so many who are hypo, have issues with their hormones intake? Where is the difficulty?
T4 is converted to T3 in many locations - liver, kidney, skeletal muscle, thyroid, brain, many individual cells - and others.
The difficulty is that swallowing a tablet once a day, and that almost certainly being T4 (levothyroxine), is so very different to a working thyroid which secretes T4 and T3 into the bloodstream in a pulsatile fashion which is quite close to continuously.
That the distribution of thyroid hormone around the body, across cell walls and blood-brain barrier, and conversion all have to work together to make us well.
Add onto that the fact that a lot of people suffering thyroid issues have some complicating factors whether autoimmune disease, removal of part or all of the thyroid, iron deficiency, B12 and folate deficiency, and so on.
It can be split. We have seen a few people who do so posting here.
The usual assumption is that because T4 itself is not active, taking that in a single dose per day is fine. We absorb the T4 and convert as needed.
However, I am not convinced it is that simple. Almost whatever we do, we would see a peak in Free T4 around two hours after swallowing our levothyroxine. Split dosing would reduce the height of that peak, but we would have more peaks.
T3 peaks are observed about 48 hours after taking T4. (That is, there is a peak of T3 that appears to correspond to conversion of T4 to T3.)
The whole control mechanism for managing conversion is subject to a very different regime to that humans usually have.
As I have just said in another thread, a micro-dosing device that injected tiny doses of T4 and T3 nearly-continuously might be a very interesting path for research to investigate. Functionally, getting towards an electronic/mechanical replacement for a thyroid.
Imagine a house in which the lights come on fairly quickly and brightly for half an hour then fade away. That would be horrible.
Whereas our own thyroids, when working, would be more like a steady light.
Yes, thyroid hormones affect every cell. In complex ways.
Sometimes thyroid hormones are discussed as signalling mechanisms. They send messages to cells to get them to alter how they are working. Imagine, your thyroid tries to get cells to burn more fuel to keep you warm by releasing more thyroid hormone which is picked up by cells and affects how fast they burn fuel.
In someone who is healthy the whole control process is delicately balanced and adjusts itself according to how much heating you need. Hour by hour, minute by minute, second by second. If your room is warmer, you turn it down. If you go out in the cold, you turn it up.
But in someone on thyroid supplements once a day, you have to hope that the total you swallow is about how much you will need. Too little and you might run out before your next dose. Too much and you might burn too much fuel and overheat.
I have no idea if anyone has ever seriously tried to produce a suitable micro-dosing device.
(Please don't take all the above too literally. I have tried to use some serious concepts to illustrate the issues. Not to say that is exactly what happens.)
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