Late Expectations

[Caffeinefreezone]

Long story short...lifelong dieter - slow metabolism. Postmenopausal weight shot up 30kg not helped by post viral fatigue. Always in calorie deficit. Healthy/bordering on fanatical nutrition. Put on 50 mg Levothyroxine a month ago. First two weeks fab. More energy, less constipated and lost half a stone. Then it all stopped and the fatigue, blurry head, leg pain/weakness has returned. Rightly or wrongly I have cut tablets in half because I just want to function. Does this make any sense to anyone? Grateful for any advice.

[SovietSong]

Hi, most people on here advise 6-8 weeks on same dose then retest.Up in 25 increments until symptoms are gone.50 is the starting dose and most people need around 100-150 daily but must be done slowly. I've been guilty in past of increasing too much too soon and undoing all the good work.Do you have your results for tsh,t3 and t4?

[Caffeinefreezone in reply to SovietSong]

Thankyou for that. I'm probably very impatient. I had 2 good weeks out of 5 years and thought "Bingo" this is it!TSH 3.4 miu/l T3 4.8 pmol and T4 15 pool. Probably all very unremarkable??

[Regenallotment in reply to Caffeinefreezone]

you don’t have the ranges on there but I would say those suggest you could be undermedicated. But it will take time, you can only change dose after 6-12 (depends on the person) of taking a consistent dose so no twiddling just keep on going 😊

[Caffeinefreezone in reply to Regenallotment]

Many thanks 😊

[Regenallotment]

yup very familiar, I could be described as orthorexic at times.

I felt awful on 25 and 50mcg, 75 was better, 100 better still, 125 the weight came off gradually, it will take time, be patient and avoid over doing things when you do feel ok.

Work on supplements and vitamins too. I thought I had the most wonderful homegrown nutrient rich diet, well I do but my leaky gut means I don’t absorb so am taking a shed load of supplements and monitoring vitamins by private testing.

Hope that helps 🌱

[Caffeinefreezone in reply to Regenallotment]

Thankyou. I have recently upped my vit D to 6000 - but until I get it checked again I'm wondering if I'm absorbing it. I'm incorporating the additional supplements which are supposed to help T3 conversion eg selenium. Perhaps I'm panicking about going backwards after having an initial positive response.

[Regenallotment in reply to Caffeinefreezone]

I had that, you feel fab and then feel awful, I had a pattern for each dose increase, super for a couple of weeks then dipped and then felt better again, worst was always week 4 for me.

[Caffeinefreezone]

Yes week 4!! OK, I'll keep the faith 👍

[tattybogle]

Hi , Welcome to the forum Caffeinefreezone

when starting levo it is usual to feel a bit of an improvement for a week or so , which then tails off again .

This is addressed when the dose is increased after a blood test ..... usually people will find that the 'feeling better' bit lasts for longer each time the dose is increased , and the feeling worse again' bit is 'less worse' each time.

It's not the levo which is causing it, well not exactly ~ it's more complicated that that , so taking less Levo won't improve your situation.

Lowering dose at this point will just mean it takes you longer to get settled on the right dose .. because we have to be taking a stable dose for 6 week before blood tests are any use... and without accurate blood tests it's hard for GP to know how to adjust dose correctly to find the best dose for you.

When we start takingT4(levo) at a low dose eg 50mcg, the pituitary (which makes TSH) notices that the fT4 level went up a bit .. and as result it lowers the TSH level.

This lower TSH level in turn lowers the amount of T4 and T3 your own thyroid is being asked to make.

and so the dose of Levo then needs to be increased to compensate for the lower amount of thyroid hormone (T4/T3) made by your own thyroid .

Eventually after a few adjustments of dose , you should reach a dose that keeps things in balance and then it doesn't need to be increase anymore .

It's an annoying tedious process of 'two steps forward, one step back' , due to the necessary wait of 6 weeks before testing on each dose . and the body adjusting its own production of thyroid hormone in response every time you add a bit .

You need to restart taking the 50mcg dose and get your blood tested 6 weeks after you started taking them.

How many days have you only taken 25mcg for ?....... if it's only a few days that wil be ok , you can still test 6 weeks from when you first started taking Levo .. but if it's a week or longer you really need to wait 6 week from when you restart taking 50mcg

TSH ~Thyroid Stimulating Hormone~ is a message from the pituitary (brain) , to the thyroid , asking it to make thyroid hormones (T4 and T3). When TSH is high , the thyroid tries to make more T4/T3 .. and when TSH is lower , the thyroid is asked to make less T4/T3

Hope that helps you understand what is going on .

Do you have the blood test results that led to your diagnosis and levo prescription ?.. if so post them on here and we can help you understand what they mean .

[Caffeinefreezone in reply to tattybogle]

Oh wow. That is so useful thankyou. I only halved the tablets on Friday so I can get back on track in the morning! My GP has told me for 5 years that my thyroid function is "within the normal range" but it was a private endo who has prescribed the levo initially, informing my GP that my levels are at the low end. TSH 3.4 miu/l T3 4.8 pmol and T4 15.0 pmol. I am taking B12 and have upped my vit D to 6000 from 4000 as I don't seem to be absorbing it well. I am so grateful for your advice. Just seemed to have been stumbling around for years without any answers/hope.

[tattybogle in reply to Caffeinefreezone]

you're welcome

presumably they the results from before you started taking levo ?..

as you've discovered , NHS GP's can really prescribe if TSH and fT4 are both in range so you're luck to have found anyone willing to try thyroid hormone with those results .

fT4 and fT3 don't seem too bad at all, (hard to say for sure without knowing the lab ranges for them though... we always need to see the lab ranges)

TSH at 3.4 is a bit higher than is usual , even though it's 'in range' . (it is most common for healthy people to have TSH closer to 1 ish.. so anything over 3 is always 'a bit suspicious' that the Thyroid is being asked to try to make more T4/T3 .. which suggests the T4/T3 levels are not as high as you individually need them to be )

have you had thyroid antibodies tested ? TPOab (thyroid peroxidase antibodies) / TG ab (thyroglobulin antibodies) to see if there is an explanation for low thyroid hormone levels ?

[Caffeinefreezone in reply to tattybogle]

Hello again. Sorry dozed off after all the excitement!I have now got my results to hand...TG ab : 13.4 (0-115)

TPOab: <9.0 (0-34)

TSH: 3.39 (0.27-4.2)

T4: 15.0 (12-22)

T3: 4.8 (3.1-6.8)

Does that tell you anything?

I also have recently been diagnosed with stage 2 lipoedema. It just seems as if my body is clinging on to everything, which has exacerbated since I haven't been able to exercise. I think I kept a lot of this under some control by eating very little and exercising a lot! I am the only person I know not to lose weight on a keto diet. I am really hoping things are starting to add up...🤞

[tattybogle in reply to Caffeinefreezone]

So ,, both thyroid antibodies are very low , so there is nothing to suggests any autoimmune explanation for hypothyroidism. (but you can't 100% rule it out , as there are some examples in research of people who had clear autoimmune damage found in their thyroid tissue who never had a record of any raised antibodies)

the fT4 and ft3 are in the lower half of the range:

fT4 is 30% through range

fT3 is 46% through range ... but plenty of healthy people have those sort of levels.. so nothing particularly remarkable there either.

So the only clue to hypothyroidism is the TSH is a bit higher than 'most' people , but not high enough to get you any sort of formal diagnosis or treatment.

if you've found someone willing to treat based on symptoms with these results , then go with it and see if it helps , but you'll need to stick with it consistently , it will probably need a few dose increases over several months and waiting for appropriate blood tests , to find out if it really helps .

Replacing thyroid hormones to get better levels of fT4/fT3 is not a quick process.... as you add more T4 from a tablet, your TSH should go down a bit , and as a result your own thyroid may make a bit less T4 in response to the lower TSH (fT4 should rise once you are at the point of taking a high enough dose to balance this loss out).

And ..... the level of fT3 you had (before levo) will probably go down too, because the 'high' TSH gives your thyroid a nudge to 'a bit make more T3 than it does usually' ..... so once settled on a decent dose of levo with a TSH that is lower , you are likely to have a higher % of T4 than T3 , (the opposite of what you have now) .

realistically there will be lot of ups and down before you find out whether replacing thyroid hormone is going to make you feel any better.

But you're on the bus now .. so best stay on and see where it takes you .

[Caffeinefreezone in reply to tattybogle]

It's a puzzle for sure when your bloodwork looks good and you can't function. And I have tried everything else. Thanks for all your input and wisdom. I will stick with it - better on the bus than watching it keep passing by!