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Levothyroxine problems? - worried i'm spiralling into depression

(45 Posts)
mom2daisypie Sun 14-May-17 07:49:49

Good Morning all,

I'll try to keep this as brief as possible. 2 years ago I was diagnosed with an underachieve thyroid and prescribed Levothyroxine (50mg). That was increased about 12 months to 75mg as I was still feeling very tired. I couldn't take it in the morning as I found I was nauseous for 2-3 hours afterwards so started taking it before bed which seemed to suit me much better - however, my sleep patterns are now all over the place (I've never been a great sleeper anyway to be honest but it's terrible now).

Some nights I can go to bed at 10pm and at 2.30am still be lying awake, it's really beginning to get me down. Most days I feel like a zombie and I'm irritable, stressed and keep bursting into tears. I'm wondering if the Levothyroxine is causing insomnia??

I have a 5 yo DD and 3 yo DD so need to keep going obviously, but I need to know what the problem is.

Could the lack of good sleep be to blame for my mood/lethargy I wonder or might I need Citalipram (I was diagnosed with low level depression about 16 years ago for which I had 10mg Citalipram but I remember feeling it did nothing)

5 days ago I stopped taking my Levothyroxine completely (probably the wrong thing to do in hindsight but after a particularly bad nights sleep I was desperate) and must say I have slept better ever since.

Has anyone on here experienced insomnia with Levothyroxine?

Blinkyblink Sun 14-May-17 08:00:50

I'm on it.

What you neee to understand is that Levo isn't introducing anything new or foreign to our body.
It is simply replacing the hormone that your body is struggling to naturally produce.

So it is not going to be be causing anything in itself (even the nausea). However if it is not sitting right with you it is because the dosage needs to be changed, rather than any the drug not suiting you.

LittleCandle Sun 14-May-17 08:02:45

If i take my thyroxine at night, I cannot get to sleep. I have to take it in the morning so that I can function. It wears off over the 24 hours between tablets, so I found taking it at night meant that I wasn't fully compos mentos during the day. Stopping it is the worst thing you can do. Why not try taking it in the morning after you have eaten? Or at lunch time. I never wake up feeling completely rested, but it is worse if I am not taking my pills immediately. Experiment to see when suits you best, but please go back onto your pills. It can take some time to get your levels right, and please do not be fobbed off by a GP saying that your bloods are good - mine are 'good' but I don't feel quite right, so am about to go back and have the tablets reviewed again, and hopefully increased. You will learn the symptoms of being on the wrong dose, and stand your ground if the GP protests. Ask for a referral to an endocrinologist - that often shuts them up and if not, then the endo knows a whole lot more about thyroid imbalance than most GPs ever will.

Blinkyblink Sun 14-May-17 08:05:50

Leave an hour before or after eating

Crumbs1 Sun 14-May-17 08:12:13

Thyroxine is cumulative. It cannot possibly be stopping you sleeping and wearing off after 24 hours. It takes a few weeks to build up in body. It can cause insomnia if you are taking too much but that would also cause other symptoms. It is something we have in our bodies normally, we're not introducing something foreign and the nausea is unlikely to be related to the thyroxine.
NICE guidance and local commissioning pathways are for GP management. You won't get (and don't need) a referral to an endocrinologist.
Don't just stop taking the tablets you can end up feeling awful after a couple of weeks.

LittleCandle Sun 14-May-17 09:03:04

I hate to disagree, but it can stop you sleeping and it does wear off, for me, over the 24 hours. I've been taking it for 20 years, so I do know what I'm talking about. Perhaps it isn't the same for everyone, but with a family history of thyroid problems, all my relatives say the same about taking it at night.

As to the NICE guidelines etc - our GP practice is still using ancient guidelines for levels and don't want to hear about symptoms until they are very extreme. I have finally found one that actually listens to me, but sadly they are a locum and probably will not be there the next time I try hopelessly to get an appointment.

HollySykes Sun 14-May-17 09:10:07

I started taking mine (150g) a while ago because I found it easier with the whole not eating before thing. It hasn't had any effect to my sleep or how I feel in the day. It's not medication as such, your replacing or topping up a hormone. I wonder if you've attributed reactions to it that are unlikely a little bit like the placebo effect which can be very powerful.

Somedaymama Sun 14-May-17 10:18:51

Are you lactose intolerant OP? Levo makes me feel ill because I am and the brand I get contains lactose.

They wear off for me after about 20 hours too so I agree, it is possible. I also feel better if I forget to take it! (I take it before bed) Without it I'm worse though.

KurriKurri Sun 14-May-17 13:02:00

Really you should be having regular checks (at least once a year) to check your levels. I was feeling all the things you describe - went for a blood test and my dose needed to be increased.
I've been on levothyroxine for 8 years - my level has never been stable - I need constant adjustments - don't stop taking it because you will end up feeling really ill.

But do get checked - thyroids are odd things - mine started very underactive for a year, then changed to being very over active and I was DX with Graves disease, had my thyroid irradiated and now am underactive again - but like I said constant re adjustments. Ask to see an endocrinologist if you can. Sleeplessness, depression, etc are all signs of dose being wrong in either direction.

Of course it is perfectly possible that you also have depression (I do and am on citalopram but my depression gets noticeably worse when my thyroid is out of balance) so I'd talk to you doc about that as well. Hope you feel better soon.

8misskitty8 Sun 14-May-17 16:17:07

When did you last have a blood test to check Ft4 (free T4) and tsh ? Those are the 2 minimum blood tests they should be doing. No point in them just checking ft4 or tsh as those results alone mean nothing.

Different companies make levothyroine, it might be that a particular brand is making you feel sick or the sick feeling might not be connected to it at all.

Another thing to consider is some people's bodies don't convert enough of the T4 hormone to T3 which is what you also need.
You need to go back to your gp and in the meantime don't stop taking your tablets as you will get ill.

ivykaty44 Sun 14-May-17 16:19:55

I'm confused as to how a cumulative hormone that is stored in the body for two months can wear off after 24 hours?

Crumbs1 Sun 14-May-17 18:18:04

Indeed ivykaty, indeed.

LittleCandle Sun 14-May-17 19:11:34

Well, perhaps my body doesn't store it effectively, but I am utterly useless in the morning without my thyroxine and missing one day can knock me off the stott for weeks. Sorry if that doesn't suit the facts, but that is the way I am. My levels are usually pretty stable, or were until the GP interfered a few years ago and I have been fighting a rearguard action ever since, never quite getting the levels right. My bloods are fine, but the symptoms are awful.

8misskitty8 Sun 14-May-17 19:50:19

When you take levothyroxine a portion of it will convert into T3 in your blood which Doesn't stay in your system as long as T4. Most blood tests only check for the T4 level, not the t3.
It is the T4 that accumulates in your body, not t3.
This is why some people experience a 'wearing off' feeling. It's actually the part of the levothyroxine that has coverted to t3 in their blood which has worn off.

My body doesn't convert enough T4 to t3. I could take loads and still feel rubbish but my blood work would show that my levels are fine or I'm on too much as gp's don't check the t3 level.

I'm under an endocrinologist so I now also take liothyronine which is the t3 hormone as well as levothyroxine. When I take it I feel great but by tea time it starts to wear off.

ivykaty44 Mon 15-May-17 07:32:45

Little candle could your symptoms be something else? If your blood tests are correct could your thyroid be masking another problem?

AnnaThursday Mon 15-May-17 08:38:09

Taking Levo at night has shown to be better absorbed so it maybe
that it's just tipping you over the edge of your ideal dose.
You can take it anytime of the day to suit you as long as you stick to
a regular time and routine i.e. what time you take food either side of
taking the Levo.
For best practise also have your blood tests the same time of day so an
established routine is kept - then any anomalies with blood test results
can be tracked more accurately.
Like others have said, it could be the fillers in the Levo tablets don't
suit you and another brand would be better. If your GP can't/won't
let you trial another brand ask to be referred to an endo.

Ekphrasis Mon 15-May-17 11:04:48

You mustn't really change meds without a test. I'd go to the gp and discuss. You need a test to see what's going on. It is possible you don't need to be on it or a lower dose but it's worth getting checked.

Your symptoms could also be attributed to something else too.

Previouslurker Mon 15-May-17 11:39:36

I'm on Levothyroxine and find I can't take them at night as I then can't sleep. I also find that if the dose is either too high or too low my first symptom that it is out is insomnia. I find if I take it on an empty stomach (and yes I know you are supposed to do this) I get terrible nausea from it. Just a glass of milk or a banana helps with this so I do take it with my breakfast which seems to work for me. Hth and I hope you are feeling better soon.

Ekphrasis Mon 15-May-17 11:45:47

Previous as long as your method for taking is consistent over a week you should be ok like that.

mom2daisypie Mon 15-May-17 16:24:05

Hi everyone,
thank you so much for the replies.

I visited my new GP today (we've recently moved) and looking at my history she says she's not sure I should have ever been put onto Levothyroxine! :/ Apparently to be diagnosed, the level of TSH in the blood should be at least 10 (which is classed as high enough to be prescribed Levo) but the highest mine has ever been is 6.6.

She advised me to start taking the Levothyroxine again as prescribed, so that I can have an accurate blood test done later this week (to see how the medication is affecting my thyroid now (my last blood test was 11 months ago). Once she has those results she will know whether it is the Levo causing my symptoms, or whether we need to go down the 'possible depression' route.

Since my visit to the GP I have been doing some research online into side effects of too much Levothyroxine and to my horror I've found that reading the list of side effects, is like reading something I've written myself!

Chest pain
Palpitations
Dizziness
Anxiety
Nausea
Nervousness
Headaches
Insomnia
Neck pain

and so on.

I now feel SURE that either my dosage is too high at 75mg, or I simply never needed the Levo in the first place, and my fatigue was down to lifestyle/diet at the time I was diagnosed. Unfortunately as a result of being diagnosed with an under active thyroid I've never felt more exhausted!

Has anyone else been wrongly diagnosed in the past?

Auchan Mon 15-May-17 16:31:54

10 is a crazy high number. 6.6 is underactive though. Under 2 is optimum for fertility and under 4 for general health is what I've always been told.

sparechange Mon 15-May-17 16:35:28

OP, ignore your GP

I've been told the same before, and when I mentioned it to an endochrinologist, she hit the roof and wrote a very stern letter to my GP

If your TSH is over 4.5, you need to be on Levothyroxine. And once you are on it, you should be dosed to keep your TSH to between 1-2

What are your TSH and T4 results from your most recent tests?

sparechange Mon 15-May-17 16:36:16

Also, most of that list applies to a too-low dose of Thyroxine, so I really wouldn't read too much into it

Blinkyblink Mon 15-May-17 16:39:01

10!!!!

No OP, this is plain wrong.

In the US it's 2.5.
In the UK is 5

mom2daisypie Mon 15-May-17 17:03:17

eek Maybe Im getting Ts4 and TSH mixed up?

She explained that to be diagnosed with an underachieve thyroid one hormone has to be higher than expected and one lower. Could it be that she meant my Ts4 was only ever at 6.6?

Sorry to sound so clueless...but I really am! I never thought I'd have tools into all of this as trusted my GP's original diagnosis

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