Finally! My Thyroid Disease is Treated Optimally! :)

[Gilbo72]

I just thought I would post my experience, prompted by my reply to a previous poster, who asked what they could realistically expect from optimal treatment. I think its helpful to see those that are happy on medication and their journey.

I have been taking 75mcg of levo and 20mcg of lio daily for about 2 years now. Previous to that I was on 150 mcg of Levo only, which suppressed my TSH, pushed my T4 over range and my T3 way low, or under range and I still felt unwell.

I do not split my lio (except for blood tests), I take everything when I wake up.

My latest thryoid function tests, taken about 9am. Last Levo was taken 23 hours previously, and 10mcg of lio was taken 10 hours previously, were:

TSH: 0.36 (0.35-4.94)

Free T4: 10.9 (9.0-19.1)

Free T3: 4.2 (2.4-6.0)

I feel good on this, and this is pretty much what it has been for the last 2 years. Sometimes my TSH is just under 0.35, like 0.32, my T4 is always low and my T3 can vary.

NHS guidelines whilst on combo therapy I have read, say; TSH should be in range, T4 is irrelevant because the T3 pushes it down, and T3 should not be worried about too much as it is a snap shot with a short shelf live, so can vary. I can say, this is what I have experienced.

There is a lot of talk on here about TSH being suppressed on T3 and not being a problem, and T4 and T3 should be in the upper 3/4s of range. When my Endo first wanted to reduce my levo, I worried. When my T4 was so low, I worried and when my T3 didn't seem that high, I worried because of what I had heard, that coupled with NHS Endo's and GPs not understanding the condition.

Then I realised I feel good. It works for me. My NHS endo worked hard and is a lovely man and I am very grateful to him. He is ecstatic about these results! And, I am very happy with how I am feeling. I realise how lucky I have been to be under his care. But it was a long, long journey. Point is, we are all different, what works for some, may not for another.

This is what I wrote on another post in response to someone asking what they can realistically expect from optimal treatment – will they ever feel well again?:

yes, but with caveats ...

1) You need to be realistic about ageing whilst ill! So you won't pick up where you left off when you first got ill and probably never will, but you can be as good as your age will allow. I have occasional aches from arthritis, I have just turned 52. My journey started when I was 38!

2) There will be days when you may feel a little over-medicated or under-medicated, depending on how strenuous your day has been.

3) I still have problems with hair-shedding, that I think has to do with other hormone problems - probably a combination of perimenopause and PCOS. (Luckily I am now tackling this the correct way rather than seeing it as another thyroid issue.)

4) Weightloss – your weight gain won't just fall off. (This is probably due to a combination of my first point and my 3rd point). I am the heaviest I have ever been, but I am comfortable with it and can now exercise, I just don't have the inclination any more as I am far too busy with other things!

Things that have resolved: mental clarity, mood, depression, water-retention, dry skin, nails, aches and pains, flu-like symptoms, energy, mojo, memory, sleep, general outlook, immune system response to illness and exercise intolerance.

It took me a long time to fight the system to get where I am. I became ill in 2008 and was not believed and misdiagnosed with ME/CFS for several years. Some of it due to my naivety some of it due to incompetence, some of it due to abominable care. I have been under the care of an endocrinology department since 2014, who finally trialled me on combo therapy after we both jumped through a lot of hoops. I have been stable and happy for the last 2 years and have just officially been handed back to the GP on a shared care agreement – long may it last! I am aware that this could well be a life-long battle with the NHS, but knowing that I can feel well again, I vow that I will fight if I ever feel I am not optimally treated.

Keep the hope alive. Believe you will get better. Understand that thyroid problems are not a quick fix, its a long game. Don't get lost down rabbit holes of research and theories. I started to give everything 3-4 months, if there was no improvement, I would try something else.

Good luck!

[Hidden]

Well Done for achieving your 'sweet spot', long may it last! I haven't found mine yet, although forever tweeking meds and doses. I am also in the menopause which doesn't help, and symptoms can be similar to that of hypothyroidism. Even so, I am eternally hopeful that one day, I will feel wonderful and reach for the mountains 🤞😁. Right now, I'm skimming the hills and trying to keep positive. Where there's hope, there's life, right? 😄

[Gilbo72 in reply to Hidden]

I’m sure my sweet spot will change as I age, but knowing that it does exist, means I will now always look for it! Hope you find yours soon. X

[sparkly]

What a great post to read. So pleased you've found what works for you and may you stay on that path forever

[DippyDame]

I'm glad you have found your sweet spot and wish you many years of good health

One comment if I may, in response to.....T3 should not be worried about too much as it is a snap shot with a short shelf live

T3 is one of the most important hormones in the body....we dismiss it lightly at our peril.

[Gilbo72 in reply to DippyDame]

Yes, I completely agree it’s important, but I agree it should not be too worried about it, (That should apply to both physician and patient), I did not say dismiss it. As it can vary hugely during the day. If I leave 20 hrs from taking it, it is non existent in my bloods. It is as bad, or worse than before being on it. If I were to take it a few hours after, it would be sky high and everyone would panic. They are right to say it is a snap shot, and not to worry too much. Ie, one stand alone test should not be diagnostic, and if anyone queries one of my blood tests on that basis, I will insist it is a snap shot and to do another, if not 2 more!

I guess the point is for us, to work out when it appears comfortably in range, and then make sure you are consistent in following the same protocol every time you get your bloods done. I refuse to get my bloods done at the surgery and insist that I go to the hospital, so that I can get there first thing and have them done roughly at the same time, each time.

my T3 and T4 are not in the upper ranges for me to feel optimal, and that’s the point. I have had enough full Thyroid function tests to know that all of them have varied to some degree even from day to day taken under the same conditions.

I was hoping that my post would help show we are all different. I was convinced to feel optimal my T4 and T3 would need to be higher, and my dosage would need to be higher than they all are when I started on combo, they don’t.

[HealthStarDust]

Johnfishman22

[Girtonian]

Well done, fantastic news. I’m interested in the idea of taking T3 in one dose, also that you take 20 mcg. I currently take 10 mcg in 2 doses but only get the mental clarity etc for a couple of hours after each dose and then fatigue etc hits again. I’m on 75 mcg Levothyroxine. Consultant (private) has suggested possibly reducing Levothyroxine to 50 mcg and increasing T3 to 15 mcg x 3 daily. I’m seeing him again in a few weeks. Any thoughts/insights welcome!

[Gilbo72 in reply to Girtonian]

When starting out on lio, I did start with smaller doses and built up to 20. I can’t remember how I did this. I can’t remember if it was throughout the day or just at one time per day - sorry, but somehow I settled on 20 a day first thing.

I did try splitting the dose for a while at the endos request, after mentioning I was sometimes dog tired in the evenings and then reverted back to once a day. Reasons being on balance;

1) I was more likely to forget the second dose, even with an alarm,

2) I couldn’t always take it exactly at the required time, so my second dose wasn’t consistent.

3) I found it a flaff. It annoyed me having to carry a pill box around and find some water when I needed it!

4) I sometimes found I couldn’t fall asleep at night with the second dose

5) I suddenly had lots of boxes of liothyronine of 5mcg each time I picked up my prescription instead of a small pot of 20mcg! (which also are more expensive)

6) I also didn’t want the more expensive cost of smaller pills being a problem in the future to any GP Sugery.

I decided, on balance, the inconvenience outweighed any negligible benefit. I figured I have to take this for the rest of my life, I don’t want it to be an annoyance. Some evenings I did get tired, but I quite like that, it’s like being a kid wanting to go to bed! (As per previous post, if I had have a strenuous day)

I think both ways take a while for your body to get used to it, perhaps if I had persisted with the two doses my body would have got used to it, but I didn’t want to.

I take mine, as soon as I wake up, then have a peppermint tea in bed, while it starts to kick in.

I do however, split my dose the day before I have a blood test, and take the second one about 3pm and make sure my blood test is before 9am the next day.

On occasion, I do forget to take my medicine in the morning, and it’s only when I notice I am really tired, I realise I have missed my dose. On these occasions, depending on the time of day, I will take my Levo as soon as I remember, and half or quarter a lio and take that, or miss it altogether.

It seems to work for me. Hope that helps.

[TL19]

Thank you so much for your post. I have always read that my levels should be in the higher range and that the dose of T3 needs to be higher etc.

I have because of this, faffed around with my dosage and never found that sweet spot.

I do feel quite well (not optimal), atm on 30mg lio and 25mg T4

I am 61 and have just started HRT to see if that helps.

Your post has given me much hope that I will get better x

[Star13]

Interesting you take your second T3 dose 18 hours before your test. The advice on here has been to take 8-12 hours before. I take my T4 24 hours before and my T3 on average around 7pm which is 14 hours before the test at 9. I tried taking it later but it always was too close to having had food. I too always used to take my dose of 40mcgs in one go but bowed to pressure to split it which like you I find a real nuisance and can often miss it or forget even after my alarm reminds me!

I’m not at my sweet spot. Better but not there. I get a lot of facial and head sweating on exertion which I can’t tell if it’s due to over medication - certainly my blood results don’t indicate that however perhaps although I’m within range I might do better lower in the range like you! My TSH is deficient but has been for many years.

As you say we are all so different so glad you have found your happy spot.

[Gilbo72 in reply to Star13]

Yes, I think there was a part of me that wanted to do what works for me. Considering I need to take this for the rest of my life, so I want it to be easy for me. If I did what is recommended then my T3 would be showing a lot higher, and maybe over, yet first thing, it would be non-existent . I think if you can work out when to take your blood test to show the numbers in range and then be consistent every time you have your bloods done, it won’t really matter where your T3 level is, if that makes sense.

[Simplyred57 in reply to Gilbo72]

Hi just reading an old post about bursitis, did yours just go away or did the T3 help?

I’m suffering with both shoulders and right hip and I’m sure it’s thyroid related but both levels are good 🤷🏼‍♀️

[Gilbo72 in reply to Simplyred57]

Hi Simplyred57 , I had actually forgotten about that, so yes it has gone away. I do get occasional pains after overuse but, not like before and feels more age related.

[Simplyred57 in reply to Gilbo72]

Thank you both my ranges are fairly high in and perhaps they don’t need to be?

FT4 81% through range

FT3 78% through range

I've already reduced my thyroxine and am thinking maybe the T3 is too high too , so might experiment an see if helps , so glad you’ve found your sweet spot and definitely proves we’re all different on this journey.