unsure if new problems are t3 side effects/over... - Thyroid UK

Thyroid UK

139,467 members163,708 posts

unsure if new problems are t3 side effects/overmedication

liaratsoni profile image
25 Replies

Hi everyone,

I started t3 last friday to go alongside my 75mcg levo taking 10mcg split into 5mcg in morning and 5mcg in afternoon. I had no ill effects for the first few days and it seems to be helping - my constipation has gone from every 3/4 days to daily/every other day (though still constipated) and my acid reflux has reduced for the first time and I actually feel hungry. However over the last couple of days I have noticed some strange affects increasing in frequency each day - I am getting this shakey uncomfortable anxiety feeling in my chest almost like my chest and heart are vibrating - its uncomfortable however it isn't entirely new - I have had it at times in the past couple of years before I was diagnosed with hypothyroidism and I at the time attributed it to anxiety which I have problems with. It is much more present at the moment however and is accompanied by feeling very spaced out and an occasional very mild headache like pain. It feels like my heart is acting strange and all over the place but when I actually time it my heartrate during these periods is steady and normal at 75ish bpm - though it used to be barely 60 before I started medication 3.5 months ago. I am also however currently quite badly underweight and not receiving adequate nutrition due to my liquid smoothie diet of 1200 calories that is all I could manage due to my extremely slow digestion from the hypothyrodism. I also had very low b12, ferritin and vitamin d before I got very ill last year and I am waiting to get them tested again but imagine by now they are even worse as my diet is lacking so much nutrition. I am also still extremely tired and cold which doesn't seem like it would fit with overmedication? Is it possible that the 10mcg t3 increase is too much for my body to handle without enough calories/when I am underweight or could this be caused by low b12 etc? I am disappointed because this is the first signs of relief I have had from the reflux and slow digestion and I don't want to go back to the constant reflux I had before. Should I keep taking the 10mcg or is it likely I need to decrease to 5mcg? Thank you!

Written by
liaratsoni profile image
liaratsoni
To view profiles and participate in discussions please or .
Read more about...
25 Replies
cazmania7 profile image
cazmania7

I have been told to start with 5mcg for two weeks. If all ok, increase by another 5mcg for two weeks and so on. Hold at 20mcg for six weeks then re-test. I have just started T3 and not noticed improvement yet but I did have some weird palpitations and my heart felt funny. I stopped all meds for one day then resumed and it’s been fine since. Good luck to you 😀

liaratsoni profile image
liaratsoni in reply to cazmania7

Thank you for the reply! I wonder if the 10mcg in one go is just a little too much stress for my body so I might try 5mcg tomorrow! Thank you and good luck to you to! :)

cazmania7 profile image
cazmania7 in reply to liaratsoni

You are splitting it which I guess is better than in one go, but from what I’ve read on here it’s best to go low and slow. It’s scary the feeling of your heart not behaving normally but somehow instinctively I know T3 is going to help

knitwitty profile image
knitwitty

Hi are you self medicating or are you under an endocrinologist for your T3? If under an Endo, what did they suggest?

I can only tell you what I did when I started self medicating.

I obtained my own T3 from Turkey (25mcg tablets) I quartered these into 6.25mcg doses.

I took one quarter per day for about 3-4 weeks , I then introduced a second dose about 10-12 hours after the first, I stuck to this dose for about 4 weeks and then changed to 12.5 meg once per day and a second dose of 6.25mcg within a few days this felt like too much so I dropped back to 2x6.25mcg which seemed fine. For convenience I tried 1x 12.5 mcg but this felt like too machine one go, I have now settled on the twice daily 6.25mcg which seems to suit me best.

I also take 75mcg of Levo once daily.

I am still trying to get the NHS to prescribe it but that's a whole other story.

It may be that you just need to take it a little more slowly, I know how easy it is to want to get well really quickly but because T3 is so potent I think it may take the body a while to adjust if you have been short of T3 for a while.

liaratsoni profile image
liaratsoni in reply to knitwitty

Hi! My endocrinologist prescribed it as he believes I have conversion issues and he suggested 10mcg for 3 weeks then contact him and tell him how I am feeling then he would likely increase it - he actually said to take the 10mcg in one go each day but I split after reading about taking it slow on here! I also take 75mcg levo daily and sympathise with the fight to get it on the nhs! I think you are right - when I was diagnosed my t3 was lower in ratio to my t4 at only 3 (range 3.1-6-5) and only went up to 4 after 3 months of levo so I think my body has been very short for a long while! I think I will drop down to 5mcg a day for a time so my body can adjust more easily. Thank you for your reply! :)

knitwitty profile image
knitwitty in reply to liaratsoni

That's fantastic that your endocrinologist has prescribed T3, but I do wonder if they fully understand how potent it is or if they do, do they want you to feel worse when you take it just so they can say it obviously isn't the T3 that you need after all, but that might just be me being cynical.

I think you are right to drop back to 5mcg for a while.

I read Paul Robinsons books about the Thyroid and self treating with T3 etc and I came to the conclusion that you can't rush getting well, we have all probably been under treated for some time before we start on T3 and we can't expect ( even though we'd like ) overnight miracles.

When I stared taking T3 I took the dose before bed and I can honestly say I have never slept so well,I took it alongside my Levo which I take at bedtime.

You have been given very good advice regarding taking vitamins and minerals I was rock bottom on vitamin D ( not quite low enough to warrant loading doses but only just above!) I was advised to take 800iu daily but this did very little to improve my levels so I changed to the Better you oral spray Vit D +K2 and I need 3000iu daily to maintain a healthy level, even during the summer.

Good luck with your "getting well" journey, people on here are so very helpful, so do come back and keep asking questions if you need help understanding things, we all struggle to understand things ( a side effect of being hypo I'm sure) but everyone here is very supportive. Take care.:)

liaratsoni profile image
liaratsoni in reply to knitwitty

I do find it funny because he started me on 25mcg levo and I got so much worse and everyone said how low it was for a starting dose and then he started me on 10mcg t3 and that's too high! :L I am really learning to appreciate the low and slow for the t3 - I am content to wait a little longer though as I have seen the first hint of improvement from the t3 so it gives me a bolstering to hold out unlike with the t4 alone which just did nothing for 3 months! I didn't know betteryou did a vitamin d spray I will have to get that! I ordered some sublingual b12 too so I can work on boosting my levels. Yes everyone on here has been so wonderful and helpful! Thank you so much and I wish you health and happiness too! :)

knitwitty profile image
knitwitty in reply to liaratsoni

I was started on 25mcg of Levo to begin with and I had a couple of weeks of feeling a bit better but that may have been psychological!!

I soon went downhill and went up to 75mcg over about 6 months. My T4 shot up to almost the top of the range but my T3 stayed stubbornly at the bottom of the range ( of course I only found that out by paying for private blood tests as the NHS labs won't ( despite being asked by the GP) test T3.

I begged and pleaded at two Endo appointments for a T3 trial but I was refused on the grounds of "Cost" and the fact that T3 was considered a "lifestyle drug", you couldn't make it up!

One doctor even suggested that if I wasn't feeling better on Levo maybe it wasn't my thyroid and perhaps I should just stop taking it!

So I asked if they took Diabetics off insulin to see if they didn't need it, so it wasn't stopped.

last July/August I decided to take matters into my own hands and self medicate, it has taken a while to get to what I feel is probably the right dosage. But I presented the evidence to the Endo at may last appointment in December and he said he would write to my GP to take over the prescribing of T3 as it was obviously what I needed.

I wait with trepidation for the follow up letter to that appointment, not holding my breath for a positive outcome but living in hope.

Next step, regardless of the outcome is to contact my NEW MP and have a good frank discussion about the pitfalls of people trying to navigate the parlous state of Thyroid treatment in this country. :)

liaratsoni profile image
liaratsoni in reply to knitwitty

I wish I could say I can't believe a doctor suggested coming off levo but at this point I am not surprised! I am glad you stood your ground and have found whats right for you and I wish you all the luck with getting it on the NHS and with contacting your MP! The whole system of investigating, recognising and dealing with thyroid issues clearly needs overhauling!

SlowDragon profile image
SlowDragonAdministrator

Usually recommended here that vitamins are tested and improved before starting on T3 as this can make T3 easier to tolerate

Suggest you get vitamins tested asap

Have you been supplementing any vitamins at all?

liaratsoni profile image
liaratsoni in reply to SlowDragon

Wow I didn't know they helped you tolerate it better thank you so much for all your help with this slowdragon! I was on b12 injections but my last one was over 4 months ago and doctors appear to have rescinded them! I was supplementing vitamin d but stopped when I couldn't tolerate it with my digestion. I will definitely try and get my vit levels tested asap

SlowDragon profile image
SlowDragonAdministrator in reply to liaratsoni

So you need to chase up getting B12 injections regularly....many need to have these more frequently than ever 3 months

JAmanda profile image
JAmanda

I was in a very similar situation. Over the past months I’ve tried all the ways of taking t3 - one dose - tiny doses across the day - circadian rhythm - everything and I just can’t tolerate it. It gives me head pressure heart flutter hunger anxiety... so I’ve decided for now to just take t4 and try to get all my vitamins up to help absorption. My stomach is useless so I’m low in one thing after another. I’ve decided that it’s the low vits that give me the symptoms in any event - pains - so working on them for a while not a bad idea. You could keep going on t3 - prob start small and build as advised above but even that never worked for me. Good luck.

liaratsoni profile image
liaratsoni in reply to JAmanda

I wish you luck! I too am going to try and raise my vitamins and see what happens. I am definitely seeing upsides along with the negatives with the t3 so I'm def going to try and stick with it for now. Thank you for the reply!

SusanAR profile image
SusanAR

When I started t3 or whenever I upped my dose I got those weird feelings and pains in my chest. I thought I was having a heart attack. It lasted 2-3 weeks then disappeared.

liaratsoni profile image
liaratsoni in reply to SusanAR

Thank you for the reply! i think it is understandable as our bodies have been likely so short for so long its probably a lot to handle! This has reassured me so thank you :)

SusanAR profile image
SusanAR in reply to liaratsoni

My resting heart rate before I started T3 was always around 40. On T3 it’s gone up to around 48. I thought the pain might be due to the fact that my heart is doing something at last! I could be completely wrong though.

Batty1 profile image
Batty1

If your underweight maybe 10mcg cytomel is too much.

Do you take anything for your heartburn and how long have you had issues?

What do you put into your smoothies and were you drinking this smoothie "prior" to developing heartburn?

liaratsoni profile image
liaratsoni in reply to Batty1

Thats what I was wondering. I don't take anything for it as its silent reflux - it primarily affects my throat in the form of burping and 'rising' sensations and I was told ppis etc (which I'm not keen on anyway) wouldn't affect it. The issues started back in may last year alongside my hypo symptoms being the worst theyve been and alongside fullness from small portions, regurgitation bloating and worsening constipation. It gradually got worse over last year as I went undiagnosed and I could eat less and less until in november my digestion couldn't seem to manage solid food at all and could only manage small quantities of liquid spaced hours apart which is what I take now. The smoothies are mainly bananas/sweet potatoes, rice milk, rice based protein powder and a little coconut yoghurt and honey. For me I think it's clearly caused by my hypothyroidism and in the week since I started the t3 the reflux has reduced significantly compared to what it was before.

Batty1 profile image
Batty1 in reply to liaratsoni

This silent heartburn "gerd" I'm not a believer you either have heartburn "gerd" or not and from what you just wrote you have classic heartburn symptoms and needs to be treated with PPIs even if it's just for a few weeks to relax your stomach troubles and then slowly wean off them and absolutely YES hypothyroidism will cause slow digestion and constipation issues (I suffer with these 2) and with slow digestion brings on heartburn symptoms ....and I'm here to tell you no matter how well your hypothyroidism is controlled is no guarantee the heartburn will subside especially if it's been left untreated for a long time it just opens up other issues like esophageal issues from the acid constantly washing up your throat.

I'm not a doctor but I'm a thyroidless person with a history of gerd and IBS-C and for me my diet was not the primary reason for gerd I believe it stems from my life long battle with IBS-C, very slow digestion and ignored thyroid issues.

Heart burn is like everything else you can be ok for days,weeks even months and suddenly your back to having heartburn again.

Toto88 profile image
Toto88 in reply to liaratsoni

Before I was diagnosed with hypothyroidism some twenty plus years ago I had chronic constipation to the point where I was impacted & had to have regular enemas ! I had piles which surgically had to be removed & another bowel op. When I was finally diagnosed & put on the right amount of thyroid meds everything started wrkg gradually again. One of the things I have done every day since that awful time is eat bran flakes every morning & then wait at least 4 hrs before taking your meds because it won’t be absorbed properly ! I also had constant reflux from a hiatus hernia & did for a v long time take antacids - little did I know years later that these also must be taken hrs apart from your thyroid med. I don’t take antacids anymore & everything on that side of things is fine. The quicker you get back to eating properly I believe will alleviate a lot of your symptoms aswell - even if there small but regular meals ! Digestion works continually by bulking the bowel, drinking plenty of water & walking or exercising. It needs a continuous flow like the car of an engine. As I say, I’ve had years experience of bowel & reflux problems & it all stopped once I took control - hope this helps you & I hope the T3 treatment also improves your health also x

liaratsoni profile image
liaratsoni in reply to Toto88

Thank you so much for this! I can't remember when my constipation started but it gradually got worse over the last couple of years as did my digestion. I went to the doctor about it (and also because I had lost my periods after previous extreme heavy periods) and was just told by the doctor it was probably just a side effect of my pcos for life! I was taken aback and disbelieving and questioned it but was shut down and so I just trusted them because they were a doctor. Now my endo thinks I probably don't even have pcos and that my periods will return when I'm medicated! The T3 really does seem to be helping and I'm hoping to retry solid food soon and try and up my calories and get some fibre too! Thank you and I wish you all the best! :) x

Toto88 profile image
Toto88 in reply to liaratsoni

You’re v welcome - I’m trying to get T3 myself because I have other problems that started last July ! So waiting on seeing a private endocrinologist! Be interesting to see how everything goes with you slowly introducing it ! I will keep in contact if you don’t mind plz - I wish all the v best x

saritadelmar profile image
saritadelmar

Just thought I would add my experience with recently adding T3. I take 75 Levo at 7 am and started with one half of a split pill of 5 mcg to it. That is 2.5 mcg T3 with the 75 Levo. Then two hours later I would take the second 2.5 half. I could feel results immediately. The heart palpitations I was continuously having on Levo only, calmed down considerably, even on such a low dose of 5 mcg T3. I also experienced the lessening of other symptoms.

Within a few weeks, I tried taking the two split doses of T3 closer and closer in time so that I could take the 5 mcg all at once, but when I did, I felt extremely nervous and intense. I called my Endo who said to only take 2.5 the entire day. In two days of doing that, I fell back into bad symptoms and decided to take the 5 mcg again, only taking the split-dose farther apart during the day. That worked better. Then as more weeks passed, I began taking the second dose again a few hours closer and my body had adjusted so that I was fine and not feeling the intensity I felt before. I think we just need time to get used to the potent effects of T3.

Some of us are highly sensitive to anything going into our mouths and bodies, so I am suggesting that even 5 mcg may be too much to take at once. The two doses of 2.5 worked for me, even though it may seem like nothing to someone else.

SlowDragon responded to a query I posted yesterday and helped with how I might proceed with an increase of T3 after two months on 5 mcg. I'm indebted to all who are so knowledgeable on this forum. Good luck on your journey forward.

liaratsoni profile image
liaratsoni in reply to saritadelmar

Thank you for your response this is all very helpful! That is very interesting that you're body took adjusting even just to 5mcg! I like you have experienced noticeable small improvements almost immediately after absolutely nothing/getting worse on levo alone after 3 months so I think my body clearly needs it its just going to take some adjusting! I am definitely going down to only 5mcg and if I still have troubles it's good to know someone else was able to deal with splitting it further! Thank you again and I wish you luck on your journey too!

Not what you're looking for?

You may also like...

Starting T3 Side Effects

Endocrinology. My new 5mcg pills arrived today, and the plan is I take 5mcg 3 times a day, total...

Levo or T3 side effects?

again. Tightness in chest and breathing still very noticeable and uncomfortable. I was diagnosed...

Side effects of Liothyronine T3.

So I wrote on here last time as I’d had a reaction to taking T3. This reaction was within seconds of

T3 medication side effects

see endo until March. he started me on 10mcg of T3 once a day and reduced my T4 by half. 100mcg...

New Morningside T3 - comments on efficacy and side-effects please?

Morningside T3 a few days ago instead of the usual Mercury Pharma T3. I'm very sensitive to tiny...