change from tablet to levothyroxine liquid dosing and anxiety/sweating and insomnia advice please

[DandyButch]

I have been prescribed liquid levo by my nhs endo. As I was on 25mcg tablet, he said to take 2.5ml (50mcg in 5 ml). I am on day 3 and my anxiety/sweating and waking early has got really bad suddenly.Should I try a slightly smaller dose and gradually titrate upwards. Any help /advice please.

[Star13]

Going on my experience of changing over, if you have not been absorbing the tablet Levo very well, your body may well perceive that you are now taking a higher dose of the oral solution if you are absorbing that better. I had problems to start with and had to cut down the dose and titrate it up slowly. Could you try splitting it and take half - 1.25 in the morning and 1.25 later, possibly in the evening instead and then see how that goes. If it’s better you can either stay on that or gradually increase one dose whilst decreasing the other until you are back on one dose a day.

[Poppy_Ann in reply to Star13]

Hi there, I was told not to take it any later than mid morning due to the not sleeping problem I am on 75mg tablets which to me have not made any difference to my level of energy I use to be quite active and lived on my sail boat in the Caribbean even though I was disabled I still use to have plenty of energy but not long after returning to UK my level of energy must be down to around 90 to 95% lower than it use to be taking 50mg did not make any difference to the way I felt so after blood tests they increased my dose to 75mg but I still have no energy just walking to my car which I park on the grass around 2 meters from the door and I am worn out by the time I am sat down with the seatbelt on, if I parked on the road like I am ment to do I would not be able to get out even the once a month that I do at the moment, Good look finding the correct level of meds for you. regards PoppyAnn

[SlowDragon Administrator in reply to Poppy_Ann]

75mcg is only one step up from starter dose

Likely to need further increase in levothyroxine after next test

Which brand of levothyroxine are you currently taking

Many people find it better to take levothyroxine at bedtime

[DandyButch in reply to Star13]

Hello Star13Thankyou for your reply.

I wondered if you remember how long it took for the side effects to wane. Was it within 24 hours of lower dose, or longer? I have only taken 1.5ml this morning. Should I see an improvement Today? Sorry to keep on, but I feel very anxious.

[Star13 in reply to DandyButch]

Try not to feel anxious as that will only make your symptoms worse. Just think this is only a passing phase and will improve. You must take all of your prescribed dose at sometime during the day so if you have only taken 1.5ml this morning make sure you take the other 1ml before you go to bed. I dont know if this will help but I wash out the syringe with water and then sqwert it into my mouth afterwards. It doesn't weaken the dose but it does help to take away the taste and the burning in the throat I always get. Hopefully by splitting the dose you will see an improvement in your symptoms. You are on a very low dose so it is not going to hurt you.Have you tested your Vit D, B12, Ferritin and Folate recently?

[DandyButch in reply to Star13]

I had vit d and b12 tested. Both were within range for doctor. But low. I have been supplementing.

[SlowDragon Administrator]

As Star13 said …..try splitting the liquid levothyroxine into 2 smaller doses. Waking and mid afternoon…or bedtime

[samaja]

IF your vitamins are low you might have problems with levo in general, irrespective of the dose. Have they also tested your cortisol, iron and folate? How long have you been on the 25 mcg?

[DandyButch in reply to samaja]

Thankyou for replying. Yes I had cortisol tested. It was elevated, but ruled out by endo as cushings disease. He said it was stress!!!!! I have been on 25mcg since first diagnosis in February 2021, then increased to 50 mcg June 2021. Then increased to 75mcg December 2021, then reduced to 50mcg I think it was March 2022.. But, all that time I never felt 'well', increasingly the opposite. In May 2022, the gp said to increase to 75mcg again, but by that time I was really, really rough, and I refused the increase and came off it. After a few days, my bloating and stomach issues had improved immensely. I had also tried various different brands, but made no difference.

However, I had to go back on it, because my doctor encouraged me to do so. In the meantime, I was waiting for endocrinology appointment. I had my first appointment early last month, and literally four days ago was given liquid levo. Both tablet and liquid are 25mcg.

[samaja in reply to DandyButch]

You sound a lot like me when I started on levo, and suffice it to say that in 8 years I never went above 25 mcg without feeling worse and actually I was off or on 12.5 quite a few times and only tolerated one brand. I now know that I have a DIO2 gene defect and my conversion has never been good so I switched to T3 only but all these years of being undermedicated took their toll. I also did loads of work on optimising my digestion and nutrients, vitamins etc in the beginning. Do you know what your FT3 is usually like and what it was like before you strated levo?

Have you read Paul Robinson's The Thyroid Patient's Manual? It really tells you what to look for and especially why your cortisol might be high (and then it usually drops low) which is related to stress but not the only way doctors think about it.

[DandyButch in reply to samaja]

I have no idea what my T3 is. No-one in the NHS will do the blood test (ie doctor and endo) They only look at TSH.

[DandyButch in reply to samaja]

I think, in hindsight, that wonderful thing, that I could've been hypo for many years before. So many subtle symptoms creeping in gradually, and needing meds. As a younger woman, my thyroid was always on the upper limits of normal. I had a fast metabolism and loads of energy. But as I got older, I assumed it was age related. What a mistake!

[samaja in reply to DandyButch]

Yes, in hindsight lots of things are quite obvious, lol. I was the same, with lot of energy at first and everything under the sun being investigated prior to thyroid but then it hit me hard and changed my life completely. Have they at least tested you for Hashimoto's? I would definitely start looking for a new GP and endo as your bunch clearly is useless. A lot of surgeries are now testing FT3 but it is still a post code lottery. I think you would definitely benefit from reading Paul's book because knowledge is power when you are dealing with thyroid and you will have to advocate for yourself with the medical profession if you want to get anywhere.

And obviously don't wait for them to test the full thyroid panel (and everything else that matters) but get your bloods tested privately if you can because you are missing some crucial information at the moment.

[DandyButch in reply to samaja]

Yes, I have hashimoto's. I haven't got the money for private testing. Lost my job because of this. Universal credit doesn't cover food these days!!!!