Levothyroxine problems? - worried i'm spiralling into depression

[mom2daisypie]

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?

No, it is quite plausible that your GP wouldn't prescribe Levothyroxine until your TSH hits 10. Mine said the same thing. They would do regular blood tests to check it was still climbing above the normal range, and then when it gets to 10, they'll prescribe the tablets to bring it back down.
It's an insane, insane policy to make sure you are really ill before they let you get better. Like I said, when I told my Endocrinologist about this, she went ballistic and wrote a very strongly worded letter quoting NICE guidelines.

Have they also tested you for Thyroid antibodies? This is to see if you have an autoimmune condition called Hashimotos where your body starts attacking your thyroid, which is what stops it working properly. It is relatively common, but if you have got it, you will need more regular blood tests and monitoring, as you will need to up your dose as your thyroid gets more damaged

Can I pick everyone's brains as you all sound very knowledgeable? I'm hypo, no matter what dose I'm on my ft4 never really moves off the bottom of the range , even when my tsh is down to 0.3 (on 100mcg) or o.4 (on 75mcg) my ft4 is always say 11 on a range of 10-20. I'm still losing hair,puffy face, tired ! I doubt the doc will increase my dose of levo again from 75anyone heard of any other options??

Have you asked for a referral to an endocrinologist?

TSH takes a lot longer to respond to changes in dose - 5-6 weeks - where as you can change your t4 in 5-6 days, so you might need an endo to do a dose trial and error with regular blood tests plus also maybe a scan of your thyroid to see if everything is ok.

Are you taking idodine supplements?
Have you been tested for hashimotos?

The treatment for thyroid in the U.K. is shit & I wish they'd licence armour as in the US but thyroxine is cheap.

Iron deficiency - which also could be the cause of many of your symptoms - goes hand in hand with an under active thyroid and they ought to test for vitamin & mineral deficiency.

Might help you make sense of your readings

Hi. I'm on thyroxine for hypothyroidism. I did find that my thyroid levels significantly effected my mood and I believe it did make me murky depressed. I was very fearful, lithargic and feeling generally crap!
It takes a while for you to get the right dosage but the dangers of not treating the thyroid outway the problems caused by the medication.

Blimey I must have big fat fingers! I meant mildly not "murky" and tearful not "fearful"

Thank you all.

I had a blood test today and hopefully results will be back on Monday afternoon. Today I've really seen myself falling deeper down a hole into anxiety and depression. I am so on edge and have been snapping/shouting at my 3 year old in a way that I hate myself for. She's so stubborn, every time we get in the car we have to have a particular song on, now she is refusing to go to nursery and cried so much today when I took her that I had to bring her home with me again, all the usual daily battles but today things have came to a head I think for me mentally. My chest actually hurts I feel so anxious/stressed out and I have been finding myself short of breath. I keep hearing my own voice in my head saying "I can't take anymore, I can't take anymore" and I'm actually beginning to worry myself!

I think I'm going mad. I have zero patience and feel I can't cope. When I think of every single day being like this it seems impossible. I work from home which is MAJORLY stressful with a difficult 3 year old around all the time, and 6 months ago we moved into the countryside so I have no support network like I used to have. Parents and in-laws can only make it here once a week.

Sorry that this has turned into a bit of a ramble but I need to speak to someone, and while my Husbands at work I can't trouble him with it, and when he gets home he's so exhausted that I don't feel it fair to bother him. He knows I'm struggling but I don't tell him that I cry every day and feel so helpless.

Since the move I also have no friends close by which clearly isn't helping either. I've never been a massively social person, but just knowing that I'm more isolated now makes me feel...well, isolated!

Can I ask how old you are? A lot of what you are saying relates to perimenopause, I had lots of your symptoms before I finally went to the GP. I am hypo too so for a while I just put it all down to that.

I'm so sorry op that does sound tough. A friend did a study on mothers in rural areas with regards to depression and networks - you are absolutely not alone.

I know from experience that illness impacts mh and vice versa too, and esp thyroid. At the same time it's important to treat the bits that are mood related too - not nec through drugs, perhaps talking therapies or cbt? That can help lots, while you're waiting for the physical stuff to get sorted.

I'm involved with the PANDAS charity for ante and post natal mh. (Only through face book). They're amazing and have a help line and in some areas mums meet, my local one has a fb also which is really helpful to post on. It was set up by my friend; anyone can volunteer and set one up in an area.,Could this help at all?

Wha part of the country are you? If you pm me I am linked to a big network through fb locally who rely on mere tips etc to get over the issue of rural network stuff. If you happen to be near it could help to get linked in? Or I could point you in the direction of groups who might be good to join?

I agree it could be hormones too. I think I was a bit peri when bf and when periods returned. They're finally settled but it took a good coupe of years.

Top tip.
Always make sure you have your TFT/ thyroid bloods taken early morning as soon as the phlebotomy department opens.
TSH has a natural 24 hour circadian rthym. TSH is highest in the early hours of the morning and drops down significantly in the afternoon, before starting to rise again late evening.

Some people just don't get on with Thyroxine; ideal TFT results don't always equate to how a patient feels. It can't always be explained scientifically.

I was started on thyroxine in 2013. Hypothyroidism was an incidental finding -I went to the GP with something else. I spent 6 months on T4 at varying doses. My blood tests showed optimal TFTs but I was extremely ill & couldn't function. I was managing to work, run the house, look after DC before Thyroxine, but afterwards I was almost a zombie.
I had to get my GP to do a Private referral to a Consultant Endocrinologist, who arranged other tests but advised me to stop taking T4 for 6 weeks.

During this 6 weeks my TSH went up to 25 but I felt so much better than at any point on Thyroxine.

After 6 weeks on nothing and after having various other tests, the Consultant prescribed T3 Liothyronine. I can happily report that this was the beginning of starting to feel like myself again & getting my health back.

Lots of tweaks since, a few ups and downs ; but my GP prescribes T3 now. I would never have got better without the Private Consultant Endo referral and definitely would never have been prescribed T3 without a specialist input.
All the best OP

Thank you for your reply - I'm 34, if genetics is anything to go by (and I know it's not always) but the women in my family don't tend to hit menopause until the late 50's so I'd be surprised if it's that...

Greenshieldstamp - thank you for sharing your experiences. I think when I do go to see the GP will ask to be referred - question - could my GP refuse? If, for example her opinion is that all is fine? I know the NHS think of budgets all the time and I always think that they try not to refer where possible - is this incorrect?

Ekphrasis - Thank you, I'm in Worcestershire. Can you have Post-Natal when your kids are a bit older? (my youngest is 3, eldest 5)
I certainly didn't feel this way before I became a Mum so maybe that's part of it, although obviously I adore my children and wouldn't be without them for the world.

mom - I think the thing is that finding life tough with kids to the point that you're struggling and feel depressed is a type of postnatal depression - the diagnosis doesn't really matter; it's the form of support you get. And someone who is sensitive to or understands the pressures of having children.

All those involved in pandas are or have had some level of emotional difficulty (depression or anxiety) directly relating to their children. I think I have done quite recently in retrospect, as I found juggling work and a 3 year old quite hard on top of health issues. I didn't have postnatal depression as such, I had antenatal anxiety, but could relate to many of the things people were talking about in the group. My life has changed so much more than my husbands, adjusting to that has been very hard. I had a long successful career which no longer exists in the way it did.

It is a bit chicken and egg and certainly health stuff causes depression and / or anxiety. Ime, dealing with health issues and children is extremely difficult as you are so very very stretched thin.

My GP did refer me to an NHS endocrinologist too but I also asked for a Private referral because I wanted to be seen ASAP-felt like I was dying.

In my case, I'd gone along to GP with an unrelated issue (a mosquito bite that just wouldn't heal) & eventually bloods including TFTs showed a TSH of 10. So I didn't present initially with typical hypothyroid symptoms. Then starting on the Thyroxine made me so drastically ill, there was some concern about an underlying adrenal disorder. Hence the endocrine referral.

From memory it cost around £150 for a Private endocrine consult. It was money well spent.

Why is it a top tip to have thyroid tested in the morning? Sorry but is this if you are hypothyroid or hyperthyroid? Surely it can't be both?