Hi. Thank you firstly for reading this post. It is a bit long.
I have Graves. I have tried carbimazole but had terrible side effects so changed to PTU in January 2021.
25 January I did a blood test. No drugs being taken. Baseline level test
T4 84 range 10-24
T3 48 range 2.0-6.0
For a month I took 200mg of PTU a day. Two tablets 12 hours apart. The result of this dose was 22 February blood test
22 February
T4 10 range 10-24
T3 12.9 range 2.0-6.0
For two weeks it was agreed to take 150mg of PTU a day. 1.5 tablets 12 hours apart. The result of this dose was 08 March blood test
08 March blood test
T4 15 range 10-24
T3 17.5 range 2.0-6.0
For a month it was agreed to take 200mg of PTU a day. 1.5 tablets 12 hours apart. The result of this dose was 07 April blood test
07 April blood test
T4 11 range 10-24
T3 12.3 range 2.0-6.0
Reluctantly I agreed to 200mg of PTU. 2 tablets 12 hours apart. After 2 weeks on this dose I started to have suicidal thoughts and was utterly depressed. Worth noting is from 07 April in those two weeks i felt fine I was cycling 25 miles a day 5 days a week, 90 minutes a day. I came off the PTU on 21 April for a week. In that week where I stopped taking the PTU my whole spine ached. After a week I felt somewhat better. For the next two weeks from 28 April to 12 May I took 100mg of PTU a day and then stopped altogether.
19 May blood test
T4 26 range 10-24
T3 21.3 range 2.0-6.0
I am scared now because of the suicidal thoughts. I don’t have those suicidal thoughts anymore but not taking the drugs is an option either. I feel stuck. Right now my whole spine is aching again and I have nausea. I have put this down to my numbers being high.
I don’t understand what happened to me psychologically in April and I don’t understand why my T3 is so high compared to my T4. When I take the PTU T4 can get into range but in order to get T3 into range T4 will fall under the range.
My vitamin b12, folate and selenium are nice and high and my iron is 30% in the range so I am supplementing with iron. Previously ferritin was elevated over range due to inflammation so this is the reason for no iron supplementation previously.
I have positive TSI, TPO, TRAB antibodies so it’s definitely a Graves diagnosis. No scans of my thyroid have been ordered or done. Endo felt my thyroid and said she could feel no nodules. I do not feel this is acceptable. There is no way she can be 100% sure. One side of my thyroid is slightly bigger and fuller than the other side but on my medical records they have been noted as smooth and symmetrical.
Thank you for reading. I am scared to start the drugs again. It is not like me to have suicidal thoughts. Not taking the drugs is not an answer but I just can’t get the balance right. Trust is an issue for me but it is even more so now I have been through this episode.
Any advice would be greatly received. Thank you 🙏
Kindest regards always NIKEGIRL
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NIKEGIRL
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Hello, I'm quite sure it's not you, but it's the Graves at work. And it will pass ...think your brain being flooded with T3, the active hormone fueling your entire body into overdrive.
I've been through pretty much the same, Carbi made me explode in a full body rash after 3 weeks of starting it and therefore I have been introduced to PTU, that eventually worked fine in blocking the thyroid production and even reducing the antibodies levels.
Yes, there is no point in deniying, you are in a serious situation and you need to divert your attention and resources towards achieving euthyroidism and fight whatever this disease will keep throwing at you .
From personal experience I know this is life-changing but can also confirm that there is light after darkness.
If you can cycle in excess of 100 miles/week it's a safe bet to say you have the will power to go through this. Still, I wonder how you actually can exercise that much, when I was in your situation I could barely get to the 3rd floor of the clinic without using the elevator.
Easing up a bit on the effort put in exercising might be a good idea, but surely I wouldn't write it off completely.
You really need to have an thyroid scan, but probably won't introduce much new info into the ecuation.
Personally I don't see alternatives to PTU, you need to reduce the huge amount of thyroid hormone your thyroid is being stimulated to produce.
Please believe me, it will get better, I've been through similar situation as well. And it will leave you changed, but not necesarely for the worst.
Hi. Thanks for your reply. I’m not biking again. Heart rate is too high again. When I biked my T4 was 11 and T3 12.3 now they are higher all exercise is off. Big sigh but that’s ok. It’s not forever. I’m not without hope but it’s that T3 vs T4 ratio. Carbimazole gave me nausea, smashing headaches and loss of taste. PTU has been very good. It’s good to know there is hope out there.
If I get on my road bike my heart rate is 160-170bpm. Not safe. I have thyrotoxicosis symptoms. Strangely I have bad nausea and my whole spine has been aching for days. These are newer symptoms. Headache as well. I don’t normally get them. I just don’t know what dose of drug to take? I’m scared. I don’t want to feel suicidal again. It’s scary.
I'll start with the disclaimer and get to the point afterwards.
I'm not a trained specialist, not a healthcare practitioner, I've been in a similar but not identical situation, your context must be surely different than mine and I've known yours from two reply's above.
Therefore, take whatever I say with more than one grain of salt.
However, i know and remember that sometimes our beliefs need challenging.
In respect to the high BPMs...they should be high, it's more than likely under such conditions. They usually use beta blockers for the purpose of controlling it.
However, depending on your age and pre-disease physical shape, 160-170 might not be such a big issue. I was in my mid 30's when I was in your situation and I remember I've seen in excess of 190 bpm on the treadmill counter, and didn't stop completely. But I have taken an effort EKG previously, to check if there are also abnormalities besides the high BPM - there were none.
The other, more important perspective is that you need to protect not only your physical well being but your psychological resilience as well.
For a person cycling 125 miles per week, surely there is some great motivation behind doing it.
Stoping it completely will not help your overall wellbeing...you should still feed bananas to the monkey. Carefully, I agree, but you need to keep the flag up.
Look for medical support if necessary, postpone higher effort, replace demanding exercise with a less harsh one, but I would not stop completely if exercising is a part of my wellbeing.
You will need your willpower intact to go through all this. If sports fuels it, then you need sports.
Now, in respect of PTU, please mind for the serious side effect signs, the most dreaded being agranulocytosis
Persistent sore throat, fever, signs of infections demand imediate medical attention and test screening. Headache and joint/bone pain is unpleasant to say the least, but probably not dangerous.
Fear of the medication and suicidal thoughts might be a common side effect of being miserably ill but it is also another known issue of the excess thyroid hormone in your system - it's anxiety and it's a known side effect of thyrotoxicosis and/or hyperthyroidism.
Fear of such medication is normal (I remember talking to myself after reading the side effect list) and so is the fear of taking them due to the side effects that are actually happening.
I remember I used to feel also betrayed by my body. How could that be happening to me?!
Statistics were overwhelming....5:1 women to male patient ratio and I was a male!
Top percentile in the Ab levels, therefore poor statistics against a possible remission.
Graves complication happens to only 20% of suffering patients - I had it and had to take the thyroid out.
85% of people on thyroid replacement do just fine on levothyroxine alone. I didn't... And if I add up those odds...my head hurts!
I too contemplated the need to give up. Part of it was realistic and I consider it rational, even now, almost 10 years after it happened, because I was really, really miserable.
But eventually I have realized that was not me. I am not suicidal, I am not a depressive person, that was not my fear, it was the disease and the context overwhelming me. And I stood my ground, gathered whatever's resources I had left and fought believing I can do better than that, which indeed happened. Life is good even after Graves and this statement it's not a compromise, even though I'm not currently out of all the troubles.
So, my advice is take it forward, easy but firmly. It will be better. Don't forget about yourself, who you are, what you stand for and take care of all your needs, be kind and merciful towards yourself, the road you're walking has been walked before. Have faith in yourself and put yourself behind getting better, don't regret anything and things will improve.
Read this blog post as well, I've found it quite good:
Wow that is such an inspiring post. I had all the agranulocytosis symptoms on carbimazole so another reason to come off it. PTU has been good. I am a sporty woman of 48 years hence the name NIKEGIRL. I have always worn sports clothes even as a child. I never possessed a dress always sports clothing. Sporty all my life. Dancer, swimmer and bodybuilder. I gave up my cycling recently because the 20 mile cycle was taking me longer and I had no energy to finish the ride. Previously I had been cycling 32 miles a day, 5 days a week. I need to workout for my own sanity. Exercise makes u feel alive. I am with a psychologist right now and I am working through issues that need tissues. I’m trying to be funny there. I am a strong person and have incredible willpower but I am tired right now. The 6 years prior has worn me down. Every month is a disappointment when my blood doesn’t get into range and it’s an emotional roller coaster ups and downs and more downs than ups. My TRAB last year was greater than >100 range greater than >0.8 is positive. I’m positively positive then. I’m trying to be funny although it’s nothing to laugh at. I don’t mind the PTU it’s the dose and how it makes u feel. 4 weeks ago I was considering an overdose. I feel like an unstable person. This is so hard. I do want to ask you if I may. How have u got on with no thyroid? Thank you for honesty and kindness.
Hi there, A couple of thoughts to chuck into the pot , but something you really need to check out thoroughly yourself. Because i really know NOTHING about it..
But i keep reading things about Acetly-L-Carnitine, and L-Carnitine in relation to it's effect for hyperthyroidism management, and i wonder if it's anything you've heard of.
I'm just wondering out loud if it might possibly 'get in the way' of some of the extra T3 you seem to be making.. but like i say this is only intended as a suggestion for the beginning of a conversation about it with people who might know if it's safe or worthwhile to consider, because i certainly do not know if it is.
The other thought is the more obvious idea of taking enough PTU to reduce T3 to a lower level, accepting that this would lower T4 far too much , and then at the same time adding Levo to put the t4 back up t a decent level... ie Block and Replace.. if it is the low T4 relative to high T3 that is causing the scary psychological effects you are having , this might keep them at bay while you stay on the PTU for long enough for the Graves antibodies to hopefully bugger off and leave you alone.
I really feel for you , being stuck between a rock and a hard place at the moment.. but you seem like a really strong person, in lots of ways, so i'm really hoping that one day this horrible time will be an part of your past history... like a piece in a patchwork quilt that makes us who we are .
Sending Love and a little understanding , (currently waiting for the next time my daughters monthly hormones turn her from successful and confident to verging on suicidal and i know how scary it is to fearing it will come back, and hoping it doesn't. But hers will definitely go away after a few days so it's not the same as what you are dealing with.)
Thank you for the articles on l-carnitine. I took 2 grams a day for about 6 months but stopped it 5 weeks ago. I can’t say that it helped like the stories I read but that’s ok because I appreciate the effort you went to to supply the information. Cheers
Hi. I welcome your thoughts into the proverbial pot so to speak. I was taking 2grams of l-carnitine a day but I have stopped this as of 5 weeks ago. Last time I took 200mg of PTU my T4 was 11 so I am confident it fell under range. Where the T3 landed I don’t know. All I know is that I felt suicidal. I stopped the PTU for a week and lay in my bed. My spine ached for a week solid and what I did forget to say was the skin on the bottom of my feet peeled off. The whole under side of the foot. Having been off the PTU my feet are now waxy and shiny. Heels are still cracked but cracks are closing over. I agree with trying the block and replace. Dr is not suggesting it. I got a phone call today from the dr. Ironically I was at his office 7 minutes before a Physio appt. he talked to me for 7 minutes. I had no appt. At no time did he suggest block and replace. It has been talked about as an option in the past. I was asked to take either 2 or 3 tablets a day, whatever I could manage and retest in 4 weeks. I understand to some degree about having an adult child talk about suicide. It’s never easy to hear and leaves u on edge. You’re a good mum and no doubt you have a good relationship and she will tell u when she is in trouble. Thank you for your thoughts. They were valuable. I hope this finds u well also. Kindest regards always NIKEGIRL
Oh well .. i admit , i was clutching at straws with the carnitine idea. Thank you for your kind words on mummying.
My other (equally unknowledgeable) two 'penneth is ... suddenly changing hormone levels by stopping PTU abruptly is not something to do to yourself if you can help it.... so until a better idea better comes along, can you at least find a stable level of it you can live with .. even of that is a lower dose that leaves your T3 too high.
I don't suppose two weeks on150mcg was long enough to know how you'd feel on that dose, and i know that T3 so high is not a good idea either....but i do wonder if 150 consistently (or maybe 175) might be 'safer' than going on and off 200 is.
Just being pragmatic ....
( how do you balance the 'safety' of too high T3 , against playing russian roulette with dark thoughts taking over your head. Swings in hormone levels have such a powerful effect on us psychologically i think (or some of us anyway).... much harder to deal with than normal depression i think.
I suspect your like of exercise is possibly as much to do with the balancing effect on the brain chemistry from endorphin ? / dopamine type stuff produced from exercise.
* Daughter's got her driving test on the 6th... hope to God she's not feeling messed up then.... she's had to wait for over 2 year's for test due to covid and other stuff happening, which means i still have to go to work with her everyday like a cabbage in the passenger seat.. she can drive perfectly well.. but for a few day's of the month she's in danger of wanting to run cyclists wearing Lycra over... so i dread to think what she'll do to the Test examiner if he 'fails' her on the 'wrong day'.... I'm trying to train her 'to be nice to cyclists'..... she's nice to horses.. honest xxx
25 miles a day.... ah i remember when i used to have muscles .. i miss them.
Even if your heads F**cked up, i bet your thigh muscles are good.
My head's fine now .... but my muscles are long gone.... why can't life just give us a break.
Well u made me laugh. No muscles are all gone too. That’s sad enough. It is about balance and that’s where I am struggling. The balance of a drug dose vs the affects on mental health. I just don’t seem to find that sweet spot. It’s either the drug dose isn’t high enough or it’s too high and suicidal intentions come along.
I do remember u saying about your daughter and the driving test. My 20 year old daughter just passed her full driving test. No buses out here in the country. She took a few years to get around to doing her full licence. She is a very quiet girl. We had sent her recently to a psychologist and he diagnosed her with autism. Hence the quiet girl. She is socially shy. Great girl though. Passed her test first time so I am crossing everything humanly possible she will pass her test.
I don’t know what I am going to do about my own drugs and that high T3.
Thank you again. I appreciate your thoughts and the answer is in there somewhere.
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