Recently, I've been experiencing hyperthyroid symptoms that are a bit extreme. I had RAI in January 2019, was diagnosed with Graves. Had a terrible conversion issue on levothyroxine, high reverse T3, high antibodies, and generally terrible time until February 2020.
I've been seeing a functional medicine doctor since Feb 2020 and have been on T3 only. I went gluten free and changed my diet to anti inflammatory. Reverse T3 came down, antibodies lowered. It was great until a couple weeks ago. Now, my body goes so hyper after taking the T3 and tonight it was pretty bad for a time. I was mistaking these symptoms for hypothyroid symptoms at first. I'm at the point where I only feel ok if I skip the T3.
I get high blood pressure, eyes about bulge out of my head, mind races like mad, feel overheated. Then I crash from feeling exhausted. This was how I felt pre-RAI when I was hyperthyroid.
Does anyone know of an explanation for this? I had blood labs 6 weeks ago, was taking 15 mcg of T3 per day in 3 separate doses and my free T3 was perfect, t4 was low, as expected, and TSH normal. I felt good at this time, also.
Went downhill since. Increasing hyper symptoms to the point I wonder if my thyroid is working. Today, I was off the wall after taking only 2 of my doses (8 am and 2pm, 5 mcg each time). It's not making sense to me.
I haven't yet spoken to my endo or functional med doctor. Plan to call tomorrow. But all the great people here always have the best advice. I'm at a loss.
My mind is racing right now so I apologize if I haven't explained myself well. If anyone has advice, I'd sure appreciate it.
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ReneeC76
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Have you seen Elaine Moore's site? She also had RAI and is very knowledgeable about Graves'. She helped diagnose me over 10 years ago when my GP thought I was going through the menopause.
So sorry to read of your continued issues adjusting to life with Graves Disease after RAI.
Primary hypothyroidism caused by RAI can be more difficult to treat, as the RAI treatment doesn't really have a time line on it.
The RAI is a slow burn and I don't think, other than to have a scan to assess the level of destruction, that you can put a definitive time line on the progression of the disablement.
I know my thyroid totally failed some eight years after ingesting the RAI as my symptoms became a lot worse with my TSH jumping up into the high teens, but I've learnt of my situation back to front, just a few years ago though my RAI was in 2005.
RAI is known to trash your vitamins and minerals and you do need your ferritin, folate, B12 and vitamin D at good, optimal levels, if only for your core strength and would suggest you look at building these up and maybe consider switching to Natural Desiccated Thyroid, which is pig thyroid and includes, T1. T2. T3. T4 and calcitonin all the same known hormones of that of the human thyroid gland.
NDT was the successful treatment for hypothyroidism for over 100 years, prior to the introduction of the blood tests and guidelines to be used alongside the new thyroid treatment of the 1960s , Big Pharma, and Levothyroxine.
With NDT you dose to the relief of symptoms, slowly increasing your dose by 1/4 grains/tablets until you feel well, and not to where your TSH, T3 or T4 are on a score card.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 : and I read that T3 is about four times more powerful than T4 with the average person using about 50 T3 daily just to function :
Having tried T3 with a slightly reduced T4 I found myself ultimately " turbo charged " - as when I tried to increase to over 6.25 T3 daily, I became very unwell for over a week and felt very " odd " and yes, I too was feeling those symptoms of being " off the wall " ???
Whilst on NDT I seem so much better, calmer and content with ' my lot ' !!!
You are currently on a total of 15 T3 a day : and I don't think this can be enough thyroid hormone replacement either now, or long term :
I also think your TSH needs to be much lower in the range and that you need more thyroid hormone replacement than you are currently taking.
I am on 57 T4 + 13.50 T3 - I am converting the T4 into T3 and presume all in all, I'm near enough up at around 100 T4 + 10 T3 if I accept that T3, for me, is about four times more powerful than T4.
I did also have high reverse T3, and I think this inevitable with Graves patients, as it's the body's way of trying to adjust and offset dangerously high levels of T4 - I don't know where my reverse T3 is now, but since I've vastly reduced down my levels of T4 I think it naturally will disperse and my body loose it.
If I saw a doctor they would not like my TSH at 0.01 and depending on the time of my last dose and the blood draw, my T4 will be low in the range and my T3 possibly running a little over range.
I have no hyper symptoms, and in reality, I'm probably running slightly hypo, but then the guidelines are not for NDT but for doctors to obsess over, even when the patient is well.
P,S. It might be worth contacting the Elaine Moore forum to ask for a recommendation of a doctor is your zip code and you could also pose your question to Elaine as she appears to take an active role in fielding questions from people going through the same situation as she once went through, and has collated many peoples experiences with Graves Disease.
Thank you, pennyannie. Yes these symptoms came suddenly and are unsettling. Things felt great for several months, then this kind of baffled me and also made me very scared and a bit depressed over it. I will look into NDT, certainly. My endo doesn't like it. It seems most here in the States prefer either T3, T4, or a T3/T4 combo that includes levo and liothyronine. They seem to frown on NDT, which does not surprise me, considering doctors never seem to know what is best for the thyroid/autoimmune patient.
I too suspected the amount of T3 I was taking was not enough, long term. But my functional medicine doctor continued to tell me to dose base on how I feel, not on what might be typical. Now with this strange recurrence of hyper symptoms I'm definitely wondering if something is off and needs addressed.
I will have a look again at Elaine Moore's site. I did read much of her advice and the questions others posted there several months ago. However, I didn't directly ask her any questions and I haven't looked back to her site since I was feeling so good at the time.
You said you probably run a bit hypo... I did notice this seemed to by my case too when I was feeling so good. Slightly hyper is certainly not where I want to be.
Yes, slightly hypo is definitely preferable to even slightly hyper :
Well, Hilary Clinton takes NDT and I'm sure it's not just her :
I believe there has been a lot of pressure to discourage NDT production and prescriptions by Big Pharma.
NDT is an old, well established " grandfather " medical treatment and been successfully used for over 100 years. It therefore doesn't need to conform to current drug restrictions, but more importantly it means Big Pharma can't license it, and earn big money out of it, by creating a monopoly.
I think you need a balance of T3 and T4 as you haven't a thyroid :
Now I know I'm ok on 57 T4 and 13.50 T3 from the NDT - I believe if need be I could try the synthetic versions again but go with around 50 T4 / 12.50 T3 :
I initially dropped to 100 T4 / 6.25 T3 and was fine and then after a month upped the T3 to 12.50 and became very strange, odd, and off the wall : and totally frightened myself :
It's all trial and error I'm afraid -
However some of your symptoms are both hyper and hypo so it's like a double whammy : I think the hair loss happens when also hypo ?
Sarah Vine who is hypothyroid and married to Michael Gove is on NDT. I did ask my local MP about it and asked why I had to buy my NDT from Thailand when she was able to get it prescribed? She said she would write to Matt Hancock and she did and the reply I got is on my profile page. I am not hypothyroid but I have had times when my levels were low so Elaine Moore suggested I take it see if I would go in remission and I did twice. I am now feeling very well but I know this won't last forever.
I've just read your reply, it's a lot of words, that say nothing, I'm so sorry, you obviously put so much in and get nothing out, it is so disheartening.
I did see once that Clinton is on NDT. And I do know of others. You are correct, big pharma will reject anything they cannot license and control. Is NDT available online with no prescription, the way some T3 is? You're right, it seems everything with this disease is trial. And error. The errors really suck lol.
Yes the hyper is the worst. When you say you frightened yourself, that's how I felt also.
Agreed, I had some hair loss while hypo also. This time it's different, more rapid and brittle. Reminds me of my hyper days.
Just another thought - the adrenals and thyroid work closely together with the adrenals picking up the slack when the thyroid can't or doesn't function well, and through too low a dose of thyroid hormone replacement.
RAI is also taken up by these little glands. I take Adrenal gland support - to repair them - I had a very achey achey lower back and couldn't stand for any length of time, even just to boil an egg - so I started some supplements of adrenal glands and after a month my back had eased.
So, I still take these supplements as well as my NDT and maintain my vitamins and minerals at optimal levels.
No I don't take anything else. I did cut my T3 dosage in half yesterday and have felt great. I think I was over doing it. I'm gluten free, on and anti inflammatory diet, and took liver support herbs for 2 months. But no other meds
It sounds like you need blood tests done. Medichecks will do that for you. I take T3 only but not 45 mcg a day which is quite a lot. If you can’t do bloods
I suggest reducing each dose by 2.5 for a week and see how you feel. I agree
Hyper and hypo symptoms are often hard to separate. Look at your pulse
and blood pressure. When hypo my pulse was 45! And blood pressure 95/65. When I take too much T3 pulse is always about 80. Good luck I know T3 is not an easy ride but like you could never take T4.
I'm afraid of introducing T4 again. Would certainly like to remain on T3 only, if possible. Things were awful when I was on T4 with T3, such bad issues with converting. I will certainly get some blood work done. Got to get this under control, for sure.
I would say you're right about that even though I have no experience with NDT. Just seems like from what little I've read about it, the ingredients are different and the body handles it much differently, and in a good way. I mentioned NDT to my functional dr and he set up an appt to talk more about it this Friday. I'm interested in trying it.
Your Thyroid and How To keep It Healthy written by a doctor with hypothyroidism Barry Durrant - Peatfiekd - this book along with Elaine Moore's - helped me get a better understanding of everything ;
I found her website was easier to navigate to learn from - but started with her book which I found rather difficult to read especially after having had the RAI - ( but was with severely reduced cognitive function and dyslexic to boot ) !!!
Do your eyes feel fine other than immediately after taking the T3? Have you noticed any other changes to your vision (eg blurred/double vision or a feeling of grittiness) ? Just wondering about thyroid eye disease, which can recur/emerge post RAI.
Hi, thankfully no I haven't noticed any issues with my eyes other than when I'm over medicated on the T3. I take the same brand of T3 each day so I'm not sure I'm having reactions to fillers or anything. I cut my doses in half yesterday and also took the doses farther apart. Felt great all day, all symptoms were gone. Slept great last night, feel great this morning. I was told so many times that on less than10 mcg a day I was certainly under medicated so I increased myself slowly to the 15 and it just ended up being a disaster. I have to stop worrying about what is so-called normal for most and just do what feels best for me. I had labs done yesterday and will have them done again tomorrow. But even if they aren't perfect, if i feel great, thats whats going to drive my decision on my dosage. Going hyper was a nightmare. Thank you for the article on Graves recurrence, I do want to be as educated as possible and be prepared for anything that can happen with the disease.
The thing is, a range is just that, what’s right for other people may not be right for you (although some results will obviously be too high or low). Most of us won’t have had our thyroid levels tested before we became ill, so we don’t know what our personal optimum was beforehand. It’s also quite possible that your thyroid is still partly working .
As you’re changing things around, it might be an idea to see if you can get some more tests done in a few weeks time.
I fully agree with you. The lab work doesn't always tell us if things are normal for us or not. And you're right, who knows what was normal for us before we started being tested for thyroid disease. I did notice that my symptoms came along between 2 and 3 hours after taking a dose of T3. So no doubt they were a result of how much i took. I didnt have the symptoms say, in the middle of the night after not taken T3 for 8 hours. Its unsettling and sometimes easy to wonder if you're ever going to have normalcy again.
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