Why cant i increase my levo without getting sid... - Thyroid UK

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Why cant i increase my levo without getting side effects!?? Aaaarrrrggggg

ThyroidObsessed profile image
17 Replies

So i was ok on 100mcg of levo for 9 years!!

Then all of a sudden something changed!!?? started with panic attacks and severe depression went and had thyroid bloods done to reveal a slightly over range ft4 and high tsh and low to mid ft3....

Since then i have tried all the different brands of uk levo but everytime i get to 100mcg my levels do the same high ft4 high tsh!! And herrendous depression and anxiety!!!... iv tried 4 times now to get to 100mcg so that i can show the endo what happens to my levels iv even gone up in 12.5 bits bery slowly for like months at a time to no avail i just cant put myself through it anymore i just want to be normal again :-(

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17 Replies
shaws profile image
shawsAdministrator

You should aks for a Free T4 and Free T3 blood test (rarely tested) which will show if you are a poor converter of T4 to T3. T3 is the only active thyroid hormone needed in all of our millions of T3 receptor cells. Without sufficient T3, we will not feel well as our metabolism isn't able to function normally.

If doctor or endocrinologist isn't forthcoming to try to improve your T3, you should source your own and add a small amount initially.

You'd have to put up a fresh post asking for a private message to be sent to you of where to source your own T3. The post will then be closed but answers should come from members who have knowledge.

If you've not had B12, Vit D, iron, ferritin and folate and thyroid antibodies tested, ask for these to be taken.

ThyroidObsessed profile image
ThyroidObsessed in reply to shaws

Latest results on 87.5mcg

TSH 10 (0.27 - 4.5)

FT4 19.1 (11 - 23)

Ft3 4.03 (3.1- 6.8)

Im currently waiting to see my 3rd endo as others have just put my dose up and down hoping it will come back normal bit all that happens if my ft4 goes higher and over and tsh goes to around 2.5 i only got tsh to below 1 when i went to 125mcg of levo but ft4 went sky high and it was hell!!!...

My b12 iron folate and ferritin are all great now i doubled my levels by supplements and eating liver once a week they are probably even higher now but not been checked recently..

But tiredness is not a symptom i have so..

Im having to keep myself hypo on 75mcg of levo just because i cannot tolerate the side effects..

I really have tried to see if they would pass but after 2 months on 100mcg they continued its torture i have 2 small boys who need there mummy to feel happy...

I have actually bought some tiromel reccomended on here but i darent take as im scared my body doesnt need it because i do have energy and dont have aches amd pains, i suffer mentally instead...

shaws profile image
shawsAdministrator in reply to ThyroidObsessed

Adjusting doses up/down to try to fit results into a range will end up, as you are, feeling awful.

The fact that your TSH is 10 (undermedicated) indicates you need an increase but as FT3 is not sufficiently high I am assuming you aren't converting T4 into sufficient T3. They should prescribe some T3 to be added to T4. Or source your own T3 and add some and see how you feel on a combination of T3/T4.

I'd source my own T3 for a trial and add some to your T4. If you don't have information put up a fresh post asking for information to be sent to you by Private Message.of where to source T3. The post will then be closed so that only private messages can be sent to you. Members do this by clicking on your name and selecting message.

Some members don't improve on T4 alone. Do you always have your blood tests at the very earliest, fasting (you can drink water- and allow a gap of 24 hours between your last dose and the test)?

I felt an immediate benefit when I added T3 to T4 but now take T3 only. Not everyone is the same and as the NHS isn't prescribing T3 at present we have to source our own.

Clutter profile image
Clutter

ThyroidObsessed,

Why do you keep trying? FT4 is high so you don't need more Levothyroxine. Increasing dose will just push FT4 higher.

ThyroidObsessed profile image
ThyroidObsessed in reply to Clutter

I dont know why i keep trying.. maybe im just trying to fix myself without t3 maybe im just confused that i was always ok on levo for 9 years...

I dont know anymore im just not coping help!..

Clutter profile image
Clutter in reply to ThyroidObsessed

ThyroidObsessed,

You've said you don't have physical symptoms of hypothyroidism but your anxiety rockets when you increase Levothyroxine. I think that indicates you don't need more Levothyroxine despite TSH being high. Can't you carry on with 75mcg until you see your endo and perhaps then get some help with why TSH and FT4 are high.

ThyroidObsessed profile image
ThyroidObsessed in reply to Clutter

I have already reduced to 75 and am feeling very low, breathless tired and brain fog.. i cant win...

Im sat here crying,

Crying because i havent got the guts to take t3

Crying because i want to be normal again

Crying because im so confused :-(

Clutter profile image
Clutter in reply to ThyroidObsessed

ThyroidObsessed,

If you try 6.25mcg of T3 and it doesn't suit it will be out of your blood in 6 hours so any adverse effects won't last long.

Kell-E profile image
Kell-E in reply to ThyroidObsessed

Like Clutter said, T3 is a very short acting substance. It does take a week to build up in your blood though. So give it a fair shot. Your labs definitely look like you are a good candidate for adding T3. You must have thought so too at some point, because you obtained some :)

SlowDragon profile image
SlowDragonAdministrator

Have you got recent test results from on 75mcg

TSH, FT4 and FT3. Do you have high thyroid antibodies?

What about vitamin D, folate, ferritin and B12. Can you add results and ranges

Ask GP to test if not been done recently

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

ThyroidObsessed profile image
ThyroidObsessed in reply to SlowDragon

Yes all my bloods are done in a morning on fasting no levo...

Thyroid results on 75mcg are..

Tsh 20 (0.27- 4.5)

Ft4 17 (11- 23)

Ft3 3.44 (3.1- 6.8)

Vitamins are all great i supplement and eat liver once a week...

SlowDragon profile image
SlowDragonAdministrator in reply to ThyroidObsessed

Looks like you need to add T3

Have you looked at list of recommended thyroid specialists from Thyroid UK

ShinyB profile image
ShinyB

Hi, I'm still on a huge learning curve about hypothyroidism. I won't pretend to understand the ins and outs of your post, nor of all the replies to my post in this link: healthunlocked.com/thyroidu.... But I too had problems with increasing my levothyroxine dose, and thought you might like to take a read of diogenes' reply -scroll down about half way for it.

ThyroidObsessed profile image
ThyroidObsessed in reply to ShinyB

Thank you, very interesting, i think we are probably in the same boat..

Have u started T3 with your levo?

ShinyB profile image
ShinyB in reply to ThyroidObsessed

hi, yes I started taking T3 two months ago. Started with a very small dose - quarter of a tablet, and gradually increased to 25mcg.

I really identify with what you wrote above about crying at everything... it is scary to take that leap to self medicate, and it's so hard when we're so brain fogged that we can't think clearly or understand information we're reading!

It's still too early days for me to have noticed any significant improvements, but I do feel a little more enthusiasm, a little more energy, my poos are more regular, and my finger nails are stronger. I'm just waiting on them all joining up to a lovely big improvement. It's encouraged me enough to believe that I'm at least moving in the right direction.

The brain fog is the most debilitating for me, and that really ramped up when I first increased my levothyroxine. I got up to 100mcg of levo and felt terrible. I have now reduced my levo dose back down to 50, plus 25mcg of T3.

As clutter said, T3 doesn't last long in the body, so it's worth a try.

ThyroidObsessed profile image
ThyroidObsessed

Thanks for your reply, it is so hard to get the courage to take it, i think mainly because im not like everyone on here, i dont suffer with lack of energy or muscle aches and pains, my main symptoms are mental, depression and anxiety, which becomes 10 x worse whenever i try to get to 100mcg of levo, its like ot does something terrible to my brain but its obvious that m body doesnt need anymore t4 as it then goes over range.. but now i am on 75 i feel lethargic and needing afternoon sleeps and breathless and feel like i have ingrained depression...

Im so determined on not to go down the antidepressant route because i know for a fact the symptoms started when my ft4 went slightly over range and tsh was around 8 and ft3 low to mid range, all i get from my gp is it could just be a coincidence and u have probably developed depression, but fro no reason!?? I sometimes sit and question myself and run through life events to try and figure it all out bit it just leads back to the thyroid...

Every morning i sit and cry with the tiny bit of t3 in my hand and try to encourage myself to take it, but im so scare of side effects i know im so sensitive to tablets too...

What do u think of my above results?

Do u think they suggest a conversion issue?

I was ok fro 9 years on 100mcg of levo, i just dont know what happened...

ShinyB profile image
ShinyB in reply to ThyroidObsessed

Hi, I nearly missed your reply. You need to remember to click reply right underneath a reply or it doesn't send the responder a notification lol.

I'm no expert, I'm still getting my head around things, but I guess it could be an accumulative effect of taking Levo. Also, reverse T3 can build up in times of stress or illness. Have you had a lot of stress? Or calorie restriction? Have a read about rT3 in this link: restartmed.com/reverse-t3/

Hypothyroidism can affect people differently, you don't have to have every single symptom on the list (thank god!). There is certainly lots of information on the internet about it causing depression, anxiety, even bipolar. Your free T3 is certainly quite low in range. And definitely low in relation to your free T4, which points to you not being able to convert very well from T4 to T3. The majority of people who can't convert, do need to take T3.

I do understand you feeling scared of it. I was too. But just start with a very small dose and build it up slowly. The other alternative is NDT, which naturally contains both T4 and T3. That's not something I know a lot about although I may look at it a bit further down the line. I felt much worse for increasing my levo. I doubt it's a problem with the levo itself, but if your body can't use it, then I think it's just converted in to RT3 instead.

There are lots of people on here who take T3, so you will be able to ask any questions and get reassurance as you go along.

And, it really doesn't last long in your system at all, so IF you felt worse for taking T3, it would soon clear from your body.

I personally think you've got a lot to gain from trying T3, and not much to lose!

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