Thank you for reading. I am looking for some advice.
My T4 was 5 range 10-22
My T3 was 12 range 2.0-6.0
These results were on 7 April 2021. I was told to take 200mg of PTU a day and do another blood test on 8 May 2021. I continued taking the 200mg of PTU but by the 21st of April I started to have suicidal thoughts. I am sorry this is not easy to read and even harder to write. I stopped the PTU. After 10 days of no drugs I am feeling better. This is the second time this has happened to me. Each time I have stopped the AT drugs. My question is. Is my low T4 making me feel suicidal? Thank you for reading and any help. Kindest regards always NIKEGIRL
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Oh poor you. Thyroid hormones ability to affect our psychiatric and neurological status is well known, and at least you are rational enough to make the connection with PTU. It must be worrying to experience such profound thought changes though.
I don’t have Graves and so no experience of PTU but I have experienced mental changes from alterations in brain chemistry caused by thyroid function issues & meds. Many hormones such as adrenaline, noradrenaline but also T3 are considered both hormones and neurotransmitters. T3 is found in large amounts in the limbic system of the brain regulating our emotions with the action of serotonin, GABA, noradrenaline,, etc. That’s why altered levels can result in anything from low mood/depression to psychosis, etc.
I know you have high levels & extreme thought but antithyroid drugs such as PTU make immense changes in order to inhibit synthesis so whether your thoughts are to do to with forced change in the HPT axis, that widening gap between T4 & T3, some genetic fault dictating the way you metabolise hormones, etc it is important to discuss with your doctor/specialist as alternative antithyroid meds may suit you better.
I find knowing a little about the science behind these occurrences make them easier to bear as they are frightening, and it confirms it isn't the real me but a consequence of something outside of my control. And to level it a little, the usual forum reference to nutrients because the enzymes needed for positive neurotransmitter chemical changes require optimal. Especially folate, B vits and iron. Also good gut health as the enteric nervous system is known as the second brain in the gut.
Hi. Thank you for your kind reply. I originally tried carbimazole but had terrible side effects. Head aches, nausea, loss of taste and I was lucky to get on to PTU. I know I am in trouble when I am thinking of suicide. I have only been in this situation where the thoughts of suicide come when my T4 was 10 in December 2020 range 10-22 and in 2014 when I had a TSH of 4.0 range 0.5-4.0. I am normally a bouncy person and physically fit. I stopped the AT drugs both times when the thoughts came and within 10 days the thoughts have gone. I don’t know what to do. One of the members for whom I talk to daily and have a great respect for said I should Pepsi my look at block and replace to keep my T4 higher in the range. I have to say I am good on my vitamins. B12, folate are all good. Only my iron is 30% through the range. I take 200mg selenium a day and 3000mg a day as well. I take a probiotic as well. You are right. Some knowledge is good as it helps you understand why u are thinking the way you are. I know something is a miss somewhere. Thank u for your kindness and thoughtfulness. Kindest regards always NIKEGIRL
I’m so sorry you are feeling this way Nikegirl and hope that members more knowledgeable than I about medication can advise. Can you talk to someone in person about the way you are feeling? I have seen a psychotherapist for help with dealing with physical & mental symptoms. Please keep posting if you need further support; we are here for one another.
Thank you Buddy195. I am seeing someone about how I feel. This person has no medical knowledge though but is more than qualified to help with the thoughts I have been experiencing. I have also been talking to another member daily who has been supporting me amazingly. I stopped the PTU for 10 days but have started again. I do worry in 2 weeks where my blood will go again.
On the first 4 weeks of PTU I was taking 200mgs a day. My T4 went from 84 to 10 in 4 weeks range 10-22. And my T3 went from 46.8 to 12 range 2.0-6.0. I then did another 4 weeks of 150mgs and my blood went from 10 to 12 range 10-22 and then my T3 went from 12 to 18.5 range 2.0-6.0. For the next 2 Weeks I went back to 200mg and my T4 went from 10 to 5 range 10-22 and my T3 was 18.5 and went to 8.0 range 2.0-6.0. I started to get suicidal thoughts and stopped my drugs. Now 10 days later I feel ok again and am staring again with 200mgs a day again.
I’m so glad you are feeling ok right now. Please PM me if you need additional support; although I work in the daytime, I will reply ASAP. Very best wishes to you.
Thank you so much. I appreciate it greatly. I’m soooo much better mentally for being off the drugs. Suicidal thoughts have all but gone. I don’t know what I do from here though. Reading your replies I can see you have struggled as well. It is such a hard disease. Affecting your entire being. I sincerely hope u r in a better place too and that the help u r receiving is working well. Kindest regards and love always NIKEGIRL
My anxiety fluctuates and is always far worse if my thyroid medication and key vitamins are not optimal. Some days are far worse than others anxiety wise. I try to practice mindfulness, write positive affirmations, keep active (I have a spin bike) & spend time outdoors, which all help. It does help to communicate with others who experience similar feelings; I’m so grateful for the support of other forum members. You are definitely not alone!
I find I have physical anxiety. If I have to go to a medical appt I cry, my heart rate increases and I breathe faster and can tremble. I was exercising but I’ve stopped again due to feeling so low. I have only two people how I have been feeling as it is a burden to carry. You are right about the forum and support from others in the same boat. Without all the good people here including yourself I would be lost. Thank you kindly.
Yes I get high anxiety and obsessive thoughts when my T4 and T3 low it most definitely affects my mental health. Unfortunately my grandson is having some thyroid issues and he worries about germs and washes his hands often. My husband finally realized I couldn’t help the worries when he saw that my grandson couldn’t help it either. When our numbers improve mood is fine, everyone take care!
A agree very much with Radd's thoughts about the potential effect of hormone levels /changes in them , but couldn't manage to explain it so well.
Maybe i 'm being too simple here, (but hey, Winnie the Poo is often right )..... if 200mcg PTU drops your thyroid hormone levels so fast, but then 150mcg lets them start to climb again, but within a couple of weeks back on 200mcg your head chemistry has 'gone wrong'...... why not take 175mcg ?
and ,of course you could look into Block and Replace.... if you are otherwise OK with taking PTU. then maybe that might be the next step to stop all the upping and downing of hormone levels.... which as Radd said , will be doing 'lord knows what' to your psychological chemistry.
Keep on walking through the shit ... "This Too Will Pass"
I spent a few years trapped in a corner with no solution, things have a way of changing , usually when you've given up trying to fix it , and life is different now.
Something is a miss and you r spot on 200mg drops my levels drastically and 150mgs sees them increase. I have thought of 175mg. I have avoided going to the dr. My thoughts are he sees me as a psychologically unstable person. I have had such a bad experience with doctors that all trust is broken. I know this is my problem but it stops me from going to the dr and seeking help. The first time I felt suicidal on the carbimazole I got a change to PTU. I worry that the next offer will be RAI or surgery. Block and replace hasn’t been mentioned. It’s good to know this is an option for me. I have started the PTU again. I will have to see where I end up. Thank you for your kindness and reply. I really appreciate it very much. I’m looking for options so I can stay on the AT drugs without feeling suicidal when my numbers get really low
Regardless of whether you are a psychologically unstable person or not ..........
(lot's of us are, as a result of our genetic make up , our chemistry, and our experiences along the way... and in my experience we're all the more interesting and enlightened humans for it, even if that does make us a bit tricky to handle , and it's hard to live with ourselves sometimes )
...........lot's of boringly stable people in the world have been treated with Block and Replace... presumably because all other routes were tried first and they kept running into problems. Having problems on PTU and finding out about B&R and suggesting you might want to try it doesn't show you're 'unstable'.. and if they think you are, that 's their problem, not yours...
I know my doctor thinks i'm unstable, and the older i get , the more i can see that there has always been some truth in that..... but it doesn't mean i have any less right to be offered a perfectly normal, safe, and logical, medical treatment plan that might improve my thyroid hormone status.
He might see me as unstable , but that's fine by me now i know the score ... i see him as an unimaginitive lemming with a lump of unresponsive play-doh for a brain....and i bet he can't dance.
Oh my Tattybogle you are soooooo funny - thank you for the laugh in all the thick syrup we are trying to wade through. Nikegirl my thoughts are with you and hope you find a solution soon ❤
Try homeopathy when you have bad thoughts, Ignatia has helped me before, there are many remedies, look some up and see what is closest fit. Best of luck! Yes I’ve lost trust in doctors too because of bad experiences
I tried a registered naturopath but it didn’t help me at all. My antibodies are so high. I use 5-htp bit that hasn’t helped either. It’s a hard exhausting road
Yes I’m very sorry you are struggling with it! I’ve just developed TPO antibodies within the last year, my grandson too. I’m hoping you can find something that will help you! The only other suggestion is perhaps some calming herbs that don’t interfere with thyroid, all my best
When you wrote…I take 200mg selenium a day and 3000mg a day as well….was that a different supplement?
What is your current TSH? usually it get stuck down low and isn’t useful to measure but Im wondering where it’s is if it high and the low FT4 might be causing your body to prioritise FT3 conversion? My knowledge is lacking?
Have you discussed adjusting dose or trying block and replace with your doctors. Do they have any explanation of why levels are unusually out of balance or a plan of how to deal with it?
Going back on medication is probably a good idea as your FT3 still very high.
I’m sorry I don’t have have a clear explanation or any useful advice to offer but wanted to say sorry you are having a difficult time. keep checking your levels regularly like you have been & posting on here for support.
Yes my bad. 200mg selenium and 3000mg vitamin d as summer has now gone. I got a good tan this year for the first time in years. TSH is <0.001. No changes in a year. When I got suicidal I just took myself off the PTU and avoided the dr. 10 days off the drugs and I feel ok again. It wasn’t just the thoughts it was I had no energy as well and didn’t get out of bed due to being so exhausted. Going to the dr is very hard for me. I have a whole physical reaction. This is the second time on the AT drugs I have felt like this and both times the levels have been close to bottom or under on T4. T3 has never got into range. From what everyone has been kindly saying, I need to go to the dr and ask for block and replace. I have started the PTU again. Thank you for replying. I do appreciate you and everyone here
I have always thought it strange that my T3 is so high in relation to my T4.
My T4 has been 84 and T3 45.8 and I was on no anti thyroid drugs then and then my T4 was 10 and T3 was 18.5. The conversion is so high. I’ve always thought that strange. No one has said a word
They probably haven’t said anything because they don’t know why. The doctors focus would be to get levels down & see TSH rise. When it’s out of balance it difficult to know what to do. Low conversion can be explained by nutritional issues (sometimes gene mutations) but high conversion is unusual and difficult to know where to start to on how to address.
Hello, I was diagnosed with graves disease in july 2018.I am being treated by an endocrinologist by the NHS in England.Firstly I was put on carbimazole 40mg and like you my T4 levels dropped.Due to my appointments being too far apart, like you my levels dropped too low( though never lower than 9 when my range is 10 to 22) He said the aim was for my T4 to be towards the top of the range.I was on this titration method for until December 2019 when I started block and replace.When on titration my levels were all over the place, hair falling out in clumps, bad body aches and anxiety to name a few symptoms.Thankfully not suicidal and my thoughts are with you regarding that.I also have TED and my eyes were really bad every time my levels went too low.My opthamologist said block and replace was better for TED as once levels are stable it is better for the eyes.In December 2019 I started on block and replace eventually ending up on 40mg carbimazole and 100mcg levothyroxine per day by april 2020.I felt quite good on this however was asked to stop all meds at end of september 2020 to see if I was in remission.However within a couple of weeks I felt all my old symptoms returning so had a blood test on 15 October and my T4 had gone back up to 69.6.So here I am back on block and replace for the second time.Hopefully I can stay on this for longer than before.No time scale has been mentioned.I know I cannot have RAI due to my TED so my final option would be surgery.I hope to try every avenue before that.Maybe even titration with more monitoring and slower increases and decreases of carbimazole.This site has been an imense help to me and I have learned so much.My graves does make me quite anxious and that for me is a vicious circle.I can't seem to handle any stress and unfortunately there are always stresses in life which in turn makes my graves worse.Hopefully my story has helped in some way.Maybe shown you what options may be available to you.Obviously low levels have serious side effects for you so block and replace may solve this for you.Knowing you are not alone will hopefully be of comfort to you.Best wishes to you .
Thank you for your wonderful reply. I think block and replace is where I am headed. I’m sorry you have had such a hard time but your story has shown similarities in my own. I don’t think a T4 of 5 is ok for my body even though my T3 was 12 and over range. I am not open to RAI or surgery. I want to keep my thyroid like you. Thank you again. I was nice you reached out and told me your story. There is hope for both of us. I am back on my AT drugs so the next two weeks will be telling. Kindest regards always to u NIKEGIRL
I think ideally I would want to do block and replace for 18 months and would push to have antibody testing before coming off the AT drugs. That seems a long way away though.
I did mention to my endo about testing my antibodies to see if they were still high but he said it wasn't needed as I would still have antibodies.I know now that it can be beneficial to see how high they are and will try again before coming of my medication in the future.
Yes I’ve heard the same. Get antibodies checked before coming off. All u can do is advocate for yourself. You sound like u r in a better place and that’s good to hear.
Hello again, we spoke today about another question but I can't find it. I've had a look on the internet( not a good idea I know) and you mentioned you'd had a head injury due to a car accident.I found something called hypopitiutarism which can be caused by damage to the pituitary gland due to numerous things including head trauma. It is the failure of the anterior pituitary to secrete TSH. Have you had any checks on your pituitary gland to check it's functioning Ok. I'm just guessing here because I've read your profile and feel so sorry for all the things that have happened to you and your family. I've not experienced myself ft4 lowering but not ft3.Could this glitch be due to a problem with the pituitary I don't know.Have you started levothyroxine yet as part of block and replace. This may increase your ft4 and make you feel better mentally, you may need to be in the upper part of the range to feel your best. Obviously you don't want to go too high on your ft3 either but I don't know if levothyroxine puts that up.Hopefull this has been of some use.I just felt I wanted to try and help.Best wishes to you.
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