I am a type one diabetic and I also have hyperthyroidism. According to the research I have been doing apparently 1/3 of diabetics have thyroid issues so Im surprised it hasn’t come up often in these forums.
I’ve been having issues with my sugar control as my thyroids have been playing up. I’ve been asked by my endo to consider getting it radiated and by doing that will probably mean I’ll end up going from over active to under active and have to take a hormone tablet for life. I’m not sure this is worth it and would like to hear what others who have gone through this have to say.
I’ve read that when you become under active, insulin will stay in your body longer due to lower metabolism so does that mean insulin dosages are lowered?
Currently my thyroid is being controlled with carbimercazole tablets but I keep relapsing and going super overactive.
Has anyone here gone through radioactive iodine therapy that can share their experience? Thanks
I don’t have thyroid issues, but I know a lot of people who do.
How comfortable are you changing who you are?
You will have less energy and tendency to gain weight if its low.
I’d exercise caution. I don’t know if this is something you really need to mess with or not.
Can you provide more info about why your desperate to change it?
The main reason is my diabetes control. When it was playing up, i had unexplained lows throughout the night. I just kept hypo’ing which was scary. That happened for about a week or two and then it stabilised again. I adjusted my basal and bolus during that period to lower it and by the time I got the right dose, the hypo’ing went away and I had to revert back to my initial dose slowly. During the day, my sugars were all over the place but it was easier to managed when you are not half asleep. At one stage I was shaky when i put out my hands in mid air - that the feeling wasn’t too great.
Also I’ve had it for 20 years or so… and it hasn’t gone away, just keeps coming back even after it was under control for a while. While it hasn’t really affected me for majority of those years, I’ve noticed in the past 5 years, the symptoms are stronger and more noticeable. Things like anxious, sweating, tiredness that I have been constantly experiencing over the years, thinking back in hindsight, i suspect it is somewhat linked to the condition but at the time I thought it was just me. I wonder if i’m underactive, will all these symptoms disappear.
I worry about weight gain, I’ve struggled with keeping my weight down even though i exercise everyday. I exercise more than most people around me and while they seem to be losing weight, my weight is just constant. I have found it very hard to shed a kilo or two even though my shirt is drenched in sweat after exercising. When I spoke to my doctor about this, he mentioned it may have to do with insulin. i don’t know. I’m currently overactive with the thyroids which is more susceptible to weight loss but it’s not happening on me despite the efforts I put in, imagine if I was underactive!
Do you think that your insurance would cover a consult with a Mayo clinic endo or Joslin? I’m kinda feeling Joslin on this one.
Its so tough with more than one condition. I feel like this situation might warrant a high roller. Your not in Australia, r u? For some reason I think that.
We don’t have mayo clinic or joslin. I have spoken to an endo and my GP and they both asked me whether I wanted to get it radiated. They mention the therapy to me nonchalantly - so its not a must do i guess. I have discussed my concerns with them but they don’t seem to really have an opinion as to whether I should do it or not. I get the feeling they are leaning towards me getting it done because thats the only way to rid the problems I’ve been facing (and to stop me complaining about them ) and there really is no other solution (besides surgery).
And I am in Australia, you probably think that because in my other posts I’ve mentioned this and you have been contributing to those posts (I’m appreciative of that by the way :D) so its probably stuck in your subconscious mind lol.
Thanks for that, appreciate it. I’m kind of thinking I don’t want another consult from the medical professionals, I think textbook theory is well and good but sometimes reality is a bit different. This is the same with what my endo and GP experience is like for me, they tell me about it like it’s no big deal because they know other people who has done it but reality is, they don’t live and breath it once its done.
I want to hear it from the other angle, from people who has done it before or know someone that has and whether they have any regrets.
I don’t actually get that impression - both seems to say it’s effective in getting rid of the over activity. I get more of a “do it or don’t do it I don’t care” from them so it feels kind of scary. Especially with the potential side effects which they don’t seem to really worry about… but I do.
Yes thats true, underactive thyroid is way more common. Thats why when i was diagnosed, the endo at the time asked the labs to run it again and said that the overactive thyroid wasn’t commonly associated with diabetes so thought the labs got it wrong.
@MM1 are there any frustrations you have with under active thyroids?
Taking generic Synthroid for years after Graves diagnosis… Doses vary, sometimes stable sometimes I need an increase or decrease. I wouldnt want to be too hyperactive T as it is way more scary than a tad low. But sometimes you just have to change things up or down. It really makes you feel weird. It affects more than people realize.
What happens when its super low? People have been telling me its easier to treat an underactive thyroid than an over active one, I never understood why.
I’ve experienced a super overactive thyroid where the TSH was undetectable. It was scary at the time, felt like everything was out of control. Constantly anxious and shaky and to have to worry about sugar control on top of that was a bit too much.
@Laura_S you mentioned you had graves disease so that is overactive thyroid and now taking synthroid which i think is hormones for underactive thyroid? I’m reading this as that you have had your thyroids radiated. Do you regret getting it done and have you experienced any side effects from being under active?
Only when my previous endo refused to increase my synthoid based on symptoms and blood work. So my primary upped it and I got a new endo.
My initial start on thyroid meds was in 1980s. First I learned it was common for T1Ds. Endo put me on meds then. No problems since then but gradual dosage increase.
Friend of mine had tumor on thyroid, and I think made it OVER active. Had surgery to remove tumor along with most of thyroid.
I’m also Hypothyroid. I take a different medicine than the others have mentioned, though I use Armour Thyroid, which rather than being a synthetic version of T3, is actual dessicated thyroid hormones. Normally people convert T3 to T4, but I don’t do that well, so benefit from having it in the medication.
I personally wouldn’t wish hypothyroidism on anyone, it’s not very well understood and hard to get properly treated, since it’s not just about having one result out of range, but having the right balance of all of them. Most doctors just throw Synthroid at it, and up your dose until you feel better or your labs look better, regardless of how you feel.
I only got the right treatment for myself because I’ve got the medical background to decipher the results, and requested the correct medicine. How many other people can advocate that well for themselves, though.
And like you’ve mentioned, it does mess with your insulin absorption. The slow absorption hasn’t really been a problem until you try to work automated insulin dosing into it, though. I don’t fit Tandem’s Control-IQ model. I still have insulin active when their algorithm says I shouldn’t.
All that said, though… You’re pretty much in a similar boat now. Which sounds like the lesser of two evils? How good are you at adapting to changes? Is it better to learn to handle a new medical condition, or continue battling the devil you already know? Personally, I like being able to anticipate my challenges. The sporadic thyroid activity sounds worse to my than getting the irradiation treatment.
I am hypothyroid and most of the time, I am just fine. It did take quite a bit of time to get it right though and I had to gain knowledge of my situation myself. I took Armour Thyroid and Naturethroid for years, but now for several reasons, they are not made as well as they used to be. I went back to the old standbys Liothyronne and Levothyroxine which are working beautifully, because I pay no attention whatsoever to my TSH levels, only my FT3 and FT4 levels.
Last I heard the author of Stop The Thyroid Madness had to stop taking or recommending the use of Naturethroid or Armour Thyroid.
Can’t you extend the active duration for your insulin on board in your bolus setting to correct this?
You are right, but the thing is which of the two evil is better and there is no way of knowing. Once treatment is done, there is no undo button.
If I’m reading it right, it sounds like both conditions can be sporadic? So is there really any win win here?
When you say feel better, what were you feeling when it wasn’t right? LacK of energy, tired? Has weight gain been a problem for you?
When symptoms of overactive thyroid appear like palpitations, there is really nothing I can do until the medication stabilises it which can take days or weeks before I see any improvements. I suspect the same for under active but dealing with other symptoms.
Unfortunately, that’s another shortcoming of Control-IQ. They made a DRASTIC change to the insulin decay model, which is wayyyy more accurate, but completely foreign to people. They chose to lock the duration of insulin action in at 5 hours for everyone, rather than teach us about the change. It works great for nearly everyone who was using a DIA of anywhere near 3 hours before, but it’s a little problematic for someone like me who was already using 5 hours before. It’s not a deal breaker for me, but if I have a large spike for whatever reason, I have to proactively switch the pump to it’s highest target range (exercise mode), otherwise it will over-correct for insulin it doesn’t know I still have on board. It’s a little counter-intuitive and a lot annoying.
No, I don’t think there’s a win. You’re going to have to decide which one you’re more comfortable struggling with. I don’t really consider my hypothyroidism to be sporadic, though. It was difficult to get treatment at all at first, and then difficult to get the right treatment, but once it was all figured out, it’s been fairly consistent. My biggest problem is that the pills are MINISCULE. If I preset my prescriptions in a pill organizer, which helps me remember to actually take them, the thyroid pills are so tiny that they can actually feel through the cracks of the dividers. I’m supposed to take three a day, but there’s a good chance of really getting 2 or 4. I know when I got four because my heart will race and I feel anxious. If I only got 2, then I’ll feel sluggish, irritable, and achey. I’ve definitely gained some weight over the years, but I’m going to chalk that up more to reducing my A1c in half and taking more insulin… And lots of good food. .
I don’t deal well with the unexpected. I get mad when things don’t go as I planned. I think the hypothyroidism is a little more consistent and predictable than what you explained your currently experiencing, so I think if I had to choose between the two, I would choose Hypo over Hyper. But, that’s just me. Maybe racing heart and random hypos (which Basal-IQ will do a lot to prevent once you’re up and running on the G6) is more appealing to you than potential weight gain and learning to adjust to a new diagnosis.
Oh thats a pain. That will also mean it will affect everyone’s insulin dosage and they need to adjust for it when they get that update.
Oh is it that sensitive? I recently had to stop taking the meds for my thyroid hyperactivity for 5 days before a thyroid scan, and didn’t really notice much of a change. My heart was palpitating but then again it was also palpitating when I was on the tablets too so I didn’t think much of it.
Ok thanks, that really helps put things into perspective. I think hyper is also in the same boat in a way, I only find it sporadic when the treatment is not right and the thyroid levels are out of wack - over time, my dosage is either too strong or too weak and you can’t really tell without a blood test and it’s been variable over the years. The other times it just sits in the background and I don’t think much of it even when they surface - i just think it is what it is. The symptoms I get are so general, I often fail to associate it with an overactive thyroid although in hindsight they probably are somewhat related.
This is a tough one. But thanks for the info you have provided.
I had a scan done to check for Graves several years ago, and then took the RAI to wipe out my thyroid. I chose that option I think because they said the alternate treatment could cause low white cells? I think??? My eyes were just short of bulging, and the tech people said I caught the thing in the nick of time. So anyway, eventually had to use Synthroid. Ive been on doses from about 125 mcg to 75 to 100. Currently using 100 with a relatively stable blood test now for a few years. there are off days. I had a blood test last week and was just about hyperT again, but my CDE said it’s ok to decide if I want to keep this dose or try to go down again (which requires a blood test at about 6 to 8 weeks.) Btw, some people like to take Armour Thyroid, which is a Synthroid alternative. My doctors would never let me try it. And to even further complicate things, one doctor told me taking six pills a week, not 7, would get me at a perfect level. He was correct. That trick often resulted ina comfortable number. As far as being hypoT, I cant say it was really bad, but I did gain weight. I only weigh 107 and when it was way too slow, I went to my highest weight ever. Boy when I look at those photos of how I looked…not good. My suggestion for the best advice is Mary Shomon. Look up her books and online articles. She gives the very best info.
) and there really is no other solution (besides surgery).
so it feels kind of scary. Especially with the potential side effects which they don’t seem to really worry about… but I do.
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