Levothyroxine dosage

[Cjjjj]

Hello...

Only recently been diagnosed (autoimmune hypothyroidism) in June 2017 and I'm currently in 100mcg.

I usually get migraine like headaches as I go up but they go within a few days though recently I've had some random ones too? Any ideas?

Also... I've seen big improvements when I compare myself to how I felt before even starting but at each dosage it seems to plateau after the initial increase of energy. I also find that I have very bad days every now and again too - if I go to bed "late" (11pm) or wake up slightly too early for my body (7am) - not really early at all right? ! Anyway when I'm having one of these bad days I end up sleeping 11-12hours again the next night and am absolutely exhausted. This is also caused by slightly too much physical activity such as just walking the dog for an hour... or riding my horse... I tend to do one or the other a day to cope!

I'm finding it really frustrating as I've been limiting my activities and things that I do in order to cope for the last 2 years (before diagnosis I tried to manage it before realising there was a big issue) but I'm just wondering if this is still a phase ? Will I ever feel like a normal fully functioning human being or will I always have to be careful not to do too much?

I'm also concerned as from what I gathered from my doctor my tests are Starting to look within the normal range but I'm not convinced that I'm back on track just yet... since I'm a 19 year old that should be able to run and jump and join in with sports but at the moment I can just about get through a day of lectures and minimal physical activity!

I also had very high bilirubin levels too which the doctor was initially concerned about but has now just diagnosed as Gilbert's syndrome... does this have any affect on everything I've mentioned above ? Apparently not.. bug is this for sure? My bilirubin levels started at 38 and then came down to 28 but still way over the upper range...

Argh. This is very frustrating... I just want to feel like a Duracell rabbit... will this ever happen?

[jgelliss]

Cjjjj

My sympathy for you . Would you have your latest lab results you can post so someone can help you with your FT3 FT4 and TSH with the reference rang included . Headaches could be from the fillers in the Levo your dosing with . You might want to ask the Dr to switch you to another brand and see if that one is better for you . I dose with the 50mcg dose multiple times because they are free of dyes and I'm allergic to the dyes . It would be great if all strengths would be dye free . Nutrients are very important like Vitamin "D" B-12/folate , selenium helps with T4 to T3 conversion . Iron (must run labs first with full iron panel and ferritin) to see if your low in iron . Nutrients help us with our thyroid meds to work well for us .

Wishing you fast resolutions .

[Cjjjj in reply to jgelliss]

Thanks for replying I'm so glad there are people out there to listen and give advice! I shall ask my doctor if I could maybe change brand and see how that helps, if at all. Definitely worth a shot!

Next time I go I'll get all my results from the start as I'd like to know now .. I did get the first results (though I can't remember anymore) and was just so confused by the numbers and contrasting ideas with regards to the "normal ranges". But I'll get them and see if someone can help out with that too!

Thank you again can't tell you how useful this is for me!

[Howard39 in reply to jgelliss]

Hi

Yes it does take a long time to feel half normal.

It is essential that your free t3 is tested too along with t4 not just a tsh.

Until you are much better I'd be careful with the excercise you mentioned. T3 levels need to be in the top quarter/ third to take on strenuous excercise. I'd be surprised if you've had it tested.

It's worth considering a private pin prick test through blue horizon) always offers on) costs approx 100 ish and they will do all the thyroid function test plus folate d3 b12 and ferretin.

You need to drink water only do it's say 8am and don't have any meds( I suggest leaving off your thyroxine for 24 hrs before the test.

The results are private take 3/4 days and you can post them on here. We will be able to tell if you convert the t4 into t3 or if you need to be considering taking some.

Also if you are deficient in any of the vitamins etc. this will be high lighted and easily addressed.

And yes 11 is too late- you only produce melatonin from 10pm to 12pm and this messes up your sleep and whole body really( Sarah Myhill web page- as I recall under sleep/ melatonin.

Will you ever be back to where you were? I'd hope you could have a good go but more info time and meds needed.

Best wishes

[greygoose]

'at each dosage it seems to plateau after the initial increase of energy'

This is perfectly normal, and just means that you aren't on your optimal dosage, yet. 100 mcg is only a small dose. And, as you only started in June, you've probably still got quite a way to go before you're optimised.

The most important thing is to always get a copy of your blood test results. If you live in the UK, it is your legal right to have a copy. You need to know exactly what your doctor is testing, and exactly what the results were. If your doctor is making grumbling noises about your results getting into the normal range, he probably doesn't know very much about thyroid. Not many doctors do. I'm afraid you're going to have to learn about your disease, and take charge, or your doctor will keep you under-medicated.

Just being in the 'normal' range isn't good enough. It's not the same as optimal, because the ranges are too wide. Your results need to be in a place that make you feel well. And there's always the possibility that your doctor isn't doing the right tests - or not enough of them.

I don't know enough about bilirubin to advise you, but I believe it's one of those tests that should be looked at in context to other tests. And, if the other tests are ok, that would be why your doctor isn't worried about it.

[Cjjjj in reply to greygoose]

Ah okay!!! Glad the plateau affect is normal... so will I eventually have more of a normal lifestyle? Will I eventually reach similar energy levels as my friends and be able to do everything with them that I've been missing out on or is it a slight game of give and take?

I know I'll always have to go back to have regular tests!

Also glad you've said if I've plateaued then my levels aged there yet as I thought maybe the headaches where because id reached a dosage that was too high for me! And I was really worried as this would be hugely contradictory to how I feel!!!

Should I just push to go up until there comes a point when I see a complete turn Around ? Ie Being anxious, not being able to sleep etc (I haven't experienced any of these things yet but this is what people say can often indicate it's too high) is that how you know the dosage is too high?

Sorry so many questions!!! But so grateful!

[greygoose in reply to Cjjjj]

It's impossible to answer many questions without seeing your lab results. There is no way of knowing just how good it's going to get for you. You just have to take it one step at a time. All I can say for sure is that it's early days, and 100 mcg levo is only a small dose.

So many symptoms can cross over from hypo to hyper, so they always have to be considered in conjunction with lab test results. Anxiety and sleeplessness can also be hypo symptoms. But, if you go slowly, increases not more than 25 mcg, you will feel when you get there. Just don't try to go too fast.

[poppppy in reply to Cjjjj]

Hi I agree with everyone else .t3 check definitely to see if you are converting your thyroxine to t3 .I wasn't so went back to tired after initial episodes of wellbeing after dose increases .

But as u are still sorting out your correct dose of thyroxine .then hopefully it's just a higher dose that u need .

Regarding your migraines have you looked at dietary interventions .as they worked for my headaches .I have been following Isabella wentz ideas in her books on auto immune hypothyroidism .

And giving up sugar and all milk products( from any animal )stopped my awful crushing headaches . I can't be sure if it was the milk Or the sugar .as I stopped both at the same time .but u could try just one .just a suggestion .

I really hope you are one of the many people who just thyroxine works for .

If not this site is your godsend .I promise u

Good luck

[DavyB]

As others have stated: it is still early days, and 100mcgs/day is not a huge dose.

When I was first diagnosed it took 6 months of blood tests/increased doses to get the dose up to optimum (50, 100, then 150mcgs) and a further 6 months at optimum to fell 100% again. Give it time, and hopefully you will feel good again soon

[Hidden]

Hi I know that when I had high levels of Bilirubin my gallbladder was infected. It was taken out and since my levels are fine. It could be something to do with the liver too.

[Cjjjj in reply to Hidden]

Oohh okay. Well mine have remained high so he is happier that they are stable at least?

He was considering having it scanned in case of liver disease etc but because they didn't fluctuate he said he was happy with that just being my normal level...