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Levothyroxine dosage

(45 Posts)
Thingsthatgo Tue 21-May-19 18:42:01

Do you medication needs change? I was diagnosed with hypothyroidism 6 months after the birth of my second child in 2015, almost exactly 4 years ago. I started on 25mcg a day, and blood tests showed that my tsh was still too high (in fact it hadn’t changed at all 6 weeks later). I was then put on 50mcg a day which was much too much and made me very poorly. AFter many changes of dosage I eventually landed on 25mcg a day and 50 mcg one day a week. It seemed ok and most of my symptoms went away. I’ve recently been for my annual blood test and apparently my tsh is too low and I’m over medicated. I need to drop down to 25 mcg a day again. I’m so confused... how can that be enough now when it wasn’t all those years ago?
Thanks for your help!

LividLaughLove Tue 21-May-19 18:44:44

Yep, needs can change and should be reviewed regularly. Only lower your dose if you don’t FEEL well. Many people feel good with labs done doctors worry will send you hyper - don’t be afraid to advocate for yourself.

Thingsthatgo Wed 22-May-19 07:34:09

Ok thank you, that’s really useful. I feel ok... but now I’m wondering if I could feel even better!

Lara53 Sun 26-May-19 08:08:20

Levo is T4 only and does not work for everyone - a healthy thyroid needs T1,2,3,4 and 5. If you’d like information about what I do please message me.

With thyroid issues it’s also vital to investigate B12 and Vit D. I use a company called Medichecks for private blood tests as GP’s won’t test all I need. You need to do the full panel thyroid plus vitamins and also add Reverse T3 test. It is well worth the cost to give you accurate baseline and they also give docs report. TSH is not an accurate measure of thyroid health as it is a pituitary hormone.

Lara53 Sun 26-May-19 08:09:46

Oh and also skip your Levo on day of testing (take after) as it gives false high results and docs will want to decrease your meds

CherryPavlova Sun 26-May-19 08:15:42

Once stable an annual test is the norm and shorter intervals if that shows much variation.

Boohootoyootoo Sun 26-May-19 08:18:52

It's totally about how you feel.

I am really well in just thyroxine but lots of people in forums need the desiccated form of thyroxine to feel better.

Take what you feel you need - don't go on numbers.

Boohootoyootoo Sun 26-May-19 08:20:30

Lara - sorry, that's really not good advice at all. Taking your meds on the day of testing shows your medicated levels which is what you need for a test. Otherwise your results are inaccurate. No doctor would suggest this.

As well as that - you'll feel shitty!

mama4321 Sun 26-May-19 17:13:09

Actually BooHoo it's the instruction I've been given at the last 2 surgeries I've attended.

Feffylith Sun 26-May-19 17:19:47

Regarding the dessicated form @Boohootoyootoo please can you advise where to obtain it please? (Pm if you'd prefer). I've been on Levo for over 30 years and would be very interested to know if it would be better for me. Thank you

Boohootoyootoo Wed 29-May-19 16:20:39

Sorry I don't take it so don't know but a quick google will help.

You need a private doctor to prescribe it so that's probably your best port of call.

Good luck.

NeurotrashWarrior Wed 29-May-19 20:23:57

It's possible that your thyroid is recovering as you are/ were on a reasonably low dose.

I'd definitely get tests done at the same time each day preferably in the morning and before taking thyroxine; as pp poster said take the 50 dose a day after the test.

What were your results?

Thingsthatgo Thu 30-May-19 19:48:19

Thanks for all of your replies. Sorry I haven’t been back to read them sooner. I feel good at the moment... I can tell I’m a little over medicated, but it’s not making me feel bad, just hungrier!

thefirstmrsdewinter Thu 30-May-19 20:00:28

Op being overmedicated can have consequences for your heart and bones. I feel well when my tsh is under 1 but within range. Best to get a copy of your results. For some reason there are doctors who think your tsh is too low even when well within range.
For pp who don't feel well on levo alone TUK may be helpful: healthunlocked.com/thyroiduk

NeurotrashWarrior Thu 30-May-19 21:10:48

I used to feel ok when over medicated; now I can feel quite ill and definitely prefer nearer the 1 (no idea why) as said it can have long lasting effects.

If you have some thyroid function that's great as it will be making some t3 of your own. It's possible to recover full function but keep being monitored in case it goes back down or actually you
Go too hyper.

MindfulBear Thu 30-May-19 23:54:45

I take levo. Started on 125. I'm now on 200. I now also take liothyronine. As I don't convert t4 to t3 efficiently so need the t3 as well as the t4.
Dr tried to lower my levo to 150 a day. I felt horrific. I had to argue my case to go back up to 200. He wants to lower it again haha. I'm refusing.

I also take low dose naltroxene. I get a private scrip for this.

These 3 plus vitamin d and magnesium have changed my life.

However I had to go abroad to find this out

When I'm not optimal my memory is poor - as in I barely function. And my weight goes up and up. (1kg a month after my dd was born). In fact I am so unwell my DH thought I had early onset Alzheimer's. Couldn't believe the change in me when my meds were altered. Within 6 weeks I was like a new woman!!!!

I also use Medichecks for all my blood tests. My GP and nhs endo cannot get the right tests done so I've taken it into my own hands.

Lots of good resources out there to support you with this. Stop the thyroid madness website is a good starting point. Also hypothyroidmom blog. And plenty others. DM me if interested in more details.

MindfulBear Thu 30-May-19 23:56:20

Oh and yes. When you go for a blood test - always go for it at the same time of day preferably morning and never take your meds that morning. Always take meds after the blood test.

Otherwise the readings can be a bit odd.

I was told to do this by my endo and by my gp.

MindfulBear Thu 30-May-19 23:56:57

@Lara53 what do you do Btw?

Lara53 Fri 31-May-19 14:59:36

Well that’s your opinion to which you are entitled. Years of vast patient experience noted in groups all over the world shows that medical professionals will then judge that you are over medicated and then put your meds down thus making you feel worse. I have been massively let down and kept sick for over a decade by the NHS and am now educating myself and treating according to information gathered from a wide variety of sources.

MindfulBear Mon 03-Jun-19 00:05:14

The other change I made, on the advice of the endocrinologist who I saw overseas, was to go gluten and soy free.

All the changes taken together = amazing improvement in well being. Changed my life.

Try going GF for 3 months and see how you feel.

2919HereWeGo Mon 03-Jun-19 07:38:05

@MindfulBear how do the medicheck bloods tests work - who takes the blood sample?
Our GP will only test TSH!

Huggybear16 Mon 03-Jun-19 07:44:53

Oh my, please don't listen to @Lara53
That's not good advice, nor has she given correct information.

2919HereWeGo Mon 03-Jun-19 08:20:55

She is right about not taking meds immediately prior or even close to a test as it produces distorted results.
Advice I was given was test in the morning and takes thyroxine afterwards.

Huggybear16 Mon 03-Jun-19 09:26:56

Well yes, if your appointment is in the morning you take your dose after the appointment.

If your appointment is in the afternoon, you take your dose in the morning as usual.

Natsku Mon 03-Jun-19 11:21:34

I'm told here not to take my thyroid meds before control tests, the nurse always asks when she takes my blood if I took it or not. Best to ask though whether you should take it or not in case they assume you are taking it and take that into account, or assume you aren't and take that into account.

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