Ups and downs on levo?: Someone just told me when... - Thyroid UK

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Ups and downs on levo?

Lenaa profile image
37 Replies

Someone just told me when you start/increase dose, there is a boost and then settles lower (hence why you need to keep going till you get to the correct dose).

I started 25ug 3.5 weeks ago and did feel a little better and have gone downhill again last few days. Is that what it is? I'll keep having this until I get to the correct dose?

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Lenaa profile image
Lenaa
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SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

25mcg is only half the standard starter dose, so yes it's extremely common to feel worse once your body gets use to initial dose

Bloods should be retested 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting.

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

All four vitamins need to be optimal

Your ferritin was low, eating iron rich foods plus daily vitamin C can help improve this

Selenium supplements can help improve conversion of FT4 to FT3

Lenaa profile image
Lenaa in reply toSlowDragon

I remember you said one might feel worse to start with but I didn't know one can feel better and then worse again. I didn't feel bad when I started.

Lenaa profile image
Lenaa in reply toSlowDragon

How will I convince the GP to increase the dose to get my results optimal? I already had to fight to get this trial. she’ll say: you’re within range, you don’t need more

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Make sure vitamin levels are optimal

Getting thyroid retested at minimum of 6-8 weeks on current dose....testing as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test

Getting TSH, FT3 and FT4 tested (likely to have to do so privately)

Lenaa profile image
Lenaa in reply toSlowDragon

But how will I convince her to increase my dose?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Wait until you see results

On such small dose of Levothyroxine TSH often goes up, and/or FT4 and/or FT3 goes down

Levothyroxine does not add extra thyroid hormones to your own thyroid hormones....it replaces your thyroid hormones

Lenaa profile image
Lenaa in reply toSlowDragon

Understood

Lenaa profile image
Lenaa in reply toSlowDragon

I’m feeling truly abysmal and I’m only 4 weeks in. GP wants to retest at 8 weeks. I can’t cope this long. I need to retest and increase ASAP. Shall I try to convince her to do it earlier than 8 weeks?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

You really need to wait 6 weeks...or if you test too early it may be that bloods won't show you need dose increase

It's common to feel pretty rough somewhere between 4-6 weeks as levels try to adjust

Remember to get tested as early as possible in morning and fasting and last dose Levothyroxine dose 24 hours before blood test

Lenaa profile image
Lenaa in reply toSlowDragon

Oki doki. I’ll survive another 2 weeks but I won’t make it till 8 or I’ll collapse.

Lenaa profile image
Lenaa in reply toSlowDragon

If Levo replaces, not adds T4, how come healthy people would end up hyper? In theory Levo would just replace their own so they wouldn’t have an excess

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Well if you take more than you need you might....but generally yes...Levothyroxine..you need enough to be able to use as when you need it ....but some people need to very fine tune dose

Some can take approximately enough...often 100mcg or 125mcg per day

Others might find they need extremely fine tuning....perhaps 125mcg 5 days and 100mcg 2 days per week

It's very much trial and error once get nearer total dose required

Lenaa profile image
Lenaa in reply toSlowDragon

GP refused point blank to test FT4 and FT3. She said she’s not allowed (bull....). We had a heated argument and she decided to withdraw levothyroxine from me altogether. She said it was only ever meant to be a trial and in spite of me saying I feel less horrific (still horrific but lesser level of unbearable) she did not care that I will actually feel worse when she stops the meds.

in reply toLenaa

Omg, what a horrible horrible doctor. I'd tell her to put her stupid reasons in writing

Lenaa profile image
Lenaa in reply to

She says it was only ever meant to be a trial and in spite of me feeling less awful, she doesn’t care. She says she’ll tell the endocrinologist that I feel less bad. How will that help me now?! I can’t wair months for a referral without meds and they’ll prob also refuse because I’m within “normal” range. They don’t care it’s very far from optimal

in reply toLenaa

But it happened to me and many. We feel an improvement upon the first doses we're started on, then we can drop again because we are going to need a raise in dosage until we get to feeling well. Blood test are important but so are clinical symptoms. See someone else. Don't waste your mind worrying on her. Good luck love X🙂

Luna1390 profile image
Luna1390 in reply to

So do you get to a point where, on the right dose, this no longer happens? I am experiencing the same thing where I raise, feel better for 6 weeks, then feel fatigued again and have to raise further. I am wondering if I can ever stop raising?

in reply toLuna1390

Of course it's going to stop, you're not going to go on and on. You have to go by your blood tests and elimination of symptoms. You have to be patient and also work on optimisation of all your vitamins and minerals that are essential for Thyroid function and good conversion of thyroid hormones for them to be utilised. This is not like taking an aspirin. It's work. It takes time effort and understanding. Read and educate yourself and find a doctor that will listen. Don't waste time worrying just be calm and proactive as possible. Take care

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

What a b***h

Did you get TSH tested? If not she should definitely have done so

Suggest you get full Thyroid and vitamin testing while still on current dose

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Come back with new post once you get results and ranges

Look at seeing different GP once you get results depending on what results show

Lenaa profile image
Lenaa in reply toSlowDragon

She’s given me TSH test but that won’t be of much help on its own. What am I going to do once my meds run out? I don’t have much left

StitchFairy profile image
StitchFairy in reply toLenaa

The only way to know whether you really need thyroid medication is to test your FT4 and FT3. If your GP won't do it, then get yourself a private test. If that shows you need thyroid hormone, then you at least have something to thrust under your GPs nose.

Lenaa profile image
Lenaa in reply toStitchFairy

Yeah but it will probably show within range as usual. I have very low T4 and T3 but it’s still within nhs guidelines so they will refuse. They’re not interested in what is optimal for a person esp a person with M.E.

StitchFairy profile image
StitchFairy in reply toLenaa

Oh :( Would you consider self medicating? Lots of people have to resort to doing so.

Lenaa profile image
Lenaa in reply toStitchFairy

YES I would. Thing is, I’m removing my breast implants next month due to their toxicity and there is the potential my thyroid may recover. I could wait until then but I’m so scared of feeling worse

StitchFairy profile image
StitchFairy in reply toLenaa

It would be amazing if removing the implants solves your thyroid problem. Did you have the ME symptoms / diagnosis before or after getting the implants?

Lenaa profile image
Lenaa in reply toStitchFairy

I’ve had implants for 9 years and M.E. for two. Can take many years for symptoms to appear and amongst the many, thyroid problems are extremely common. So it’s possible explant will return my thyroid to normal. Implant toxins are endocrine disruptors

Lenaa profile image
Lenaa in reply toStitchFairy

I posted an update yesterday in a new thread

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

So have you had TSH test yet?

Got the result?

Remind me.....have you had both TPO and TG thyroid antibodies tested?

High antibodies confirm cause of hypothyroidism as due to autoimmune thyroid disease also called Hashimoto's

There seems to be possible connection between Hashimoto's and breast implants

thyroidpharmacist.com/artic...

redriverhealthandwellness.c...

Lenaa profile image
Lenaa in reply toSlowDragon

What would happen if I just stopped Levo? Because I’m in a pickle. There’s a chance removing my breast implants (next month) will allow my thyroid to recover because the toxins are endocrine disrupters and thyroid problems are extremely common in breast implant illness. So I could stop Levo, explant and see how I feel and retest. But I’m scared I’ll feel worse until or even after explant. I cannot afford to feel worse. But if I don’t try stopping, I won’t know if explant is improving my thyroid. Also, if I’m going to self medicate, I might as well go for ndt because it’s a better medication. But then I’d have to go through adaptation all over again. Don’t know what to do.

Im sorry if I missed any replies, the thread is muddled up 😬

Lenaa profile image
Lenaa in reply toSlowDragon

Yes indeed, implants cause a huge amount of illness including thyroid problems.

I haven’t tested anything yet as the argument with GP over not giving me T4 and T3 and antibodies test only happened yesterday. She’s only given me TSH which I was furious about. She essentially said this was only ever meant to be a trial and she can’t give me Levo when all my TSH results have always been normal. Complete ignorance over my T4 and t3.

I was going to do that TSH this morning just because I might as well. I haven’t taken Levo last night but I had breakfast. I eat early because I get severe fatigue after eating so it gives me recovery time before I have to leave the house. I might have to leave the test and try on a day I can leave eating till later.

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

NHS rarely tests FT3 or FT4 if TSH is within normal range

Completely inadequate as we all know

So majority have to test privately

Ideally, if possible, do test before eating and early morning

Lenaa profile image
Lenaa in reply toSlowDragon

So what would happen if I just stopped given I’m only on 25ug?

SlowDragon profile image
SlowDragonAdministrator in reply toLenaa

Many people seem to manage fine.

Others (including myself) become extremely unwell.

If you are having operation to remove breast implants TSH must be in "normal" range or anaesthetist may refuse to operate.

Lenaa profile image
Lenaa in reply toSlowDragon

Someone just offered me a month’s worth of Levo so that will keep me going at least until after the op at which time I can reassess the situation. I’ll do my TSH tomorrow first thing since I have the request anyway. I’ve booked with another GP for next week to argue my case all over again

Lenaa profile image
Lenaa in reply toSlowDragon

I posted a long overdue update yesterday

dfran profile image
dfran

If you felt better before than you do now, don't take it. It seems you may not have a deficiency. It is not a good thing to take. It affects your life in all sorts of ways Ask your doctor to test for vitamin deficiency.

Lenaa profile image
Lenaa in reply todfran

No, no I feel less awful than before I took it but worse than the first three weeks or so on it

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