How long does it take for a new dose to take f... - Thyroid UK

Thyroid UK

127,269 members149,453 posts

How long does it take for a new dose to take full effect

hollyrosi profile image
20 Replies

Hi everyone, ive been taking 100mcg levo for almost 3 weeks now maybe a bit less, but without my doctor knowing , and im improving!! I cant believe I'm writing these words but I feel well ! I dont feel anxious anymore either. I dont know why it didn't work when I tried before? I feel like I had to reduce to go up? And it worked! My mind feels different and I go everyday. My energy is much better, although I still feel a bit sleepy. But its the nice sleepy you get when you increase your dose , not the drained exhausted sleepy. Im so happy that something is finally changing I could cry!! If it wasn't for so many people on here saying the same thing I probably wouldn't have tried to go up again. x

I have no idea how I'm going to play this with my gp. Hes the type to take me off it completely for increasing my dose on my own. He thinks I'm taking 50 mcg and my levo will soon run out. I've got a medi check test here ready to take in a another few weeks (ill have to check when thr cut off is) and hopefully my levels are good, but the gp won't listen to any results ive had from private testing. Has anyone else been in a similar situation? Holly

20 Replies
Lalatoot profile image
Lalatoot

Hollyrosi some folks resort to buying their own levo to top up their dose. This only works if your TSH stays in range otherwise the GP again might reduce your NHS dose.

Brightness14 profile image
Brightness14

I go to my GP every five months for my prescription for Levo plus T3. I even show the Doctor my blood test results which are perfect. I actually take Thyroid s NDT and have been for over seven years. NDT is not allowed in France. He is happy I am happy and feel well with no thyroid. These are free for me without a thyroid.

hollyrosi profile image
hollyrosi in reply to Brightness14

My doctor would never allow me to use private blood test results, he would make me have an nhs test too ,best case scenario ! worst case he will take me off it for messing with my dose ,hes a bit weird like that. Ill probably get an appointment with the nurse first who is way more approachable and arrange a blood test with her. I feel really well im so happy somethings moving in the right direction! I only have to take one pill, plain old levo 😀

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

Suggest you change to a different GP

This GP did nothing for you …..leaving you under medicated on too small a dose levothyroxine and as direct result you became folate deficient, B12 deficient and ferritin far too low at 22

Only by you being pro active and getting low vitamins improving …..now you can tolerate increase in levothyroxine

Which brand of levothyroxine are you currently taking

Have you had vitamin D tested recently?

hollyrosi profile image
hollyrosi in reply to SlowDragon

I'm taking accord which i think is the same as northstart 100mcg which I've been able to order this morning. Not many other brands are avaliable right now except teva and northstar and I didnt fancy trying teva again.

Yes I've really been through it and it upsets me to think I may have lost all those pregnancies because of someone else being rubbish at their job. Those experiences will stay with me and have changed me unfortunately. They told me the miscarriages are not due to my thyroid but couldn't find another reason for them, in either of us.

I did have it tested 11th June and it was 47 (50 - 144).

I take some vit d and some b vitamins that don't contain biotin at the minute.

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

Accord don’t make 25mcg tablets…so if you eventually need more than 100mcg ….you will need to cut 50mcg tablets in half to get 25mcg or in 1/4 to get 12.5mcg

Northstar 50mcg and 100mcg are also Accord

Northstar 25mcg is Teva

Teva brand upsets many, many people

Best avoided

Thorne Basic B recommended Vitamin B complex option that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement eg Jarrow Methyl folate

Vitamin D is too low

Are you currently taking vitamin D supplement?

Aiming for vitamin D at least around 100nmol with Hashimoto’s

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

jgelliss profile image
jgelliss in reply to hollyrosi

Wishing you Strength and Sympathy. Very tragic. We need to be our own advocates.

hollyrosi profile image
hollyrosi in reply to jgelliss

thank you ! 😊 x

DippyDame profile image
DippyDame

Well done you!

I despair at how we have to play cat and mouse with medics in order to be properly medicated. This one sounds as if his confidence/ knowledge is in his boots!50mcg is just a starter dose... we inevitably need more.

I totally agree....if it wasn't for this forum I would have continued to think it was just my bad luck that I felt so unwell. Instead, it was bad medical judgement/ knowledge that did that.

Your GP has no grounds to discredit Medicheck results the tests are accredited...show him this!

Our partner laboratories are fully accredited and are committed to the highest clinical standards by internal quality control (IQC) and external quality assurance through national schemes such as UK NEQAS. They have been inspected by the United Kingdom Accreditation Service (UKAS) and have been accredited to ISO 15189.

medichecks.com/pages/our-la...

About a month ago you posted these labs

TSH: 2.85 (0.3-5.5)

FT3: 4.4 (3.1-6.8)

FT4: 14 (12-22)

You were clearly undermedicated but your GP would most likely only consider TSH which is not an accurate assessment as you will know

thyroidpatients.ca/2021/07/...

If this GP won't budge I agree with Lalatoot.....DIY!!

Stay well!

hollyrosi profile image
hollyrosi in reply to DippyDame

Thanks so much! I have really gone through it you know, I cant tell you how hard its been for me physically and mentally, I just couldn't find what I was supposed to be doing. There is so much conflicting advise out there its scary.... and so much of it comes from health professionals like doctors nurses recurrent miscarriage specialists endocrinologists! They all told me different things. My doctor wanted to get my tsh to 2.5 so hes really happy with that latest results despite low ft4, another miscarriage and slowly worsening symptoms. It seems that I can now tolerate a higher dose which I couldn't do before. I am feeling positive and excited about the future again finally.

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

Im glad I did though because it seems that I can now tolerate a higher dose which I couldn't do before.

That’s almost certainly because you’re now improving low vitamin levels

It’s chicken and egg

Low thyroid levels leads to vitamin deficiencies

But In order to tolerate levothyroxine we need good vitamin levels

hollyrosi profile image
hollyrosi in reply to SlowDragon

if I took 100 a year ago I would have been k.o'd

jgelliss profile image
jgelliss in reply to DippyDame

DD So well said . I believe that dosing is more *Art Than Science*.

Regenallotment profile image
Regenallotment

Hi, I did something similar back in April. Upped from 25 to 50mcg Levo without GP felt incredible. Then couldn’t get a repeat prescription. So went for blood test, GP only tested TSH and automated message was ‘normal’ no action, even though I told them this was on the double dose, this normal, double my prescription! Reply was as if I was a naughty child, couldn’t get an appointment (zero appointments available and no booking into future) so dropped to 25mcg again to preserve stocks, felt dreadful, back to zombie mode, waited 2 weeks did a Medichecks test, managed to attach that pdf to an email request to GP surgery and made a polite but firm comment about ’normal’ being inappropriate for autoimmune thyroid disease (my GP surgery don’t recognise the word Hashimoto’s) and politely linked the nice guidelines about 1.6mcg/kg dosing. Plus mentioned receiving advice from Thyroid UK (didn’t mention forum). Lovely new young woman GP rang me same afternoon, prescribed 50mcg after long discussion (she looked up the links while we were on the phone and cross checked with GP online) agreed I should be titrating up to 115mcg. That was 6 weeks ago, I’m just gathering strength to test again and ask for 75mcg but actually tempted to ask for the 115mcg and titrate myself testing 6 weekly but chances of that are slim! Anyway I hope it’s reassuring to hear someone else has done something similar, although I think I got lucky with an open minded GP. I did repeat the line in NICE that says ‘increase until the patient feels well’ a lot of times. She was repeating it back to me by the end of the call. I hope I get her next time. I’ll be interested to hear how it goes. 🙏🦋🙏

hollyrosi profile image
hollyrosi in reply to Regenallotment

Why are they like this? Its like we have to fight to get medicine its crazy!! You must have felt awful dropping back to 25 and 2 weeks its a long time to wait while you're feeling so ill. Im so glad there are places we can order it from, just incase ! I hope you get the nice doctor next time ! My gp has such a bad attitude, I cant get a word in edge ways when I see him. The last time I saw him, he said 'you haven't come in to talk to me about your thyroid again have you?' I felt so poorly and had just had another failed pregnancy and was clearly undermedicated. Its just not how you should speak to patients who have come in to ask for help.

Ill stay on 100 for a another few weeks and then test with a medicheck. Hopefully the numbers look good !! 🙏

Regenallotment profile image
Regenallotment in reply to hollyrosi

Oh my goodness change your GP, sounds awful. Wishing you all the very best, send updates 🙏🦋🙏

DippyDame profile image
DippyDame in reply to hollyrosi

His pompous attitude sounds like a cover up for his lack of knowledge!

he said 'you haven't come in to talk to me about your thyroid again have you?'

What springs to mind is....

No! I've come to talk about the treatment you have provided which has left me feeling very unwell. I would like you to tell me if this is the best you expect for me.

If that is the prognosis then I'm going to discuss this appointment with the practice manager and ask to see another GP who is able to listen to me and to discuss my failing health.

I think "Doctor" as in MD has become a status symbol for some of them rather than the mark of a caring medical practitioner.

hollyrosi profile image
hollyrosi in reply to DippyDame

oh I agree ! He should be retiring soon, hes been there since I was a baby and im 36 now! And he was old then! He owns the practice but its time to let go. I wish I could write which practice it is so you guys can see the reviews 🙊. There are other doctors there I can try and see and hopefully they'll be able to understand why I decided to experiment, its not like I've been irresponsible with it. Im excited ! I feel good 😃😃 Nearly everytime I posted on here someone told me to increase and they were all right.

Batty1 profile image
Batty1

I will never understand why doctors won’t take results from and accredited lab that we paid for out of pocket …. What do they think we are slipping a $20 to the lab tech for bad results … so stupid.

hollyrosi profile image
hollyrosi in reply to Batty1

😂😂

You may also like...