Anyone recognise this pattern of insomnia?

[Greypaws]

Hello again everyone,

Another symptom question. Insomnia! Always a tricky one to work out what is underlying cause and what helps.

I am no stranger since being a small child I have hated going to bed and getting up. Difficult to know exactly but on average it probably takes me best part of an hour unless truly exhausted to get off to sleep. Once asleep I have always slept well and loved to snuggle back down and dose in the morning.

But this is something else - I lie down pretty/absolutely exhausted and just lie there - it feels like all night - and just don’t sleep. At best I dip in and out briefly. Even in the morning I can’t sleep (I remember rare sleepless nights in the past when finally at dawn just before the alarm goes off I’d finally drop off). Not now - up early and spend the day with all symptoms of having been up all night (gritty eyes, tired, can’t concentrate, grumpy) till next night. Occasionally I do get a night of sleep - don’t know why might just be sleep deprivation.

For years prior to this I was exhausted and sleeping 12-14hrs a day (only period of my life without initial insomnia).

I have stopped my coffee and reduced my thyroxine and done all obvious sleep hygiene that I can. And checking and correcting other possible deficiencies eg iron, folate, magnesium etc.

My questions are:-

1 Has anyone else with b12 deficiency gone from excess sleep to insomnia - my neurological symptoms have definitely worsened in this time so wondering if this is a typical pattern in progression of b12 deficiency?

2 If so did it improve with injections? Initially I assumed once my b12 levels were back up my sleep would improve but maybe the insomnia reflects damage that takes a while to repair like my peripheral neuropathy and cognitive impairment which are improving but certainly not gone.

3 Anything anyone has done which has worked to improve their insomnia.

Sorry this has turned out so long. Thank you to anyone who has got this far and an even bigger thank you to anyone who might still have the energy to reply.

Greypaws 😊

PS And it’s not anxiety. Though a certain level of frustration is present that just when I see the possibility of getting my life back I am permanently tired due to lack of sleep.

[Showgem]

I have had a problem with getting to sleep and at times insomnia always. I do all the usual things as well but I’m now taking magnesium citrate 200mg just before going to bed and It does seem to help with sleep (I started taking this as I had a vit D deficiency and found it’s best to take magnesium and K2 mk7 with vit D)I find I either need to do my b12 injection in the morning or last thing at night otherwise I feel “wired” at night and can’t get off to sleep.

[Greypaws in reply to Showgem]

Thank you. I had been thinking of trying magnesium but not got round to it. I will try now though. Interesting about the injection. I was doing it in the evening as I read a post by someone on here that he slept better. But then as I still wasn’t sleeping I have been trying earlier in the day but as I have been getting up late it’s actu been more like midday so I will try changing that as well. It might be the injection. Though it was really bad before I started having injections.

[Showgem in reply to Greypaws]

Years ago when I was going through a tough time with PTSD I had insomnia. Even when I got to sleep I would wake feeling anxious, after a while I started keeping a pen and notebook on the bedside table, when I woke I would write down what I was so anxious about, what seemed to be so important in the middle of the night wasn’t anyway near as bad in the morning. I would be able to get back to sleep after I had written it down. It’s not good when you can’t switch your brain off!

[Marz]

Could it be Adrenal issues ? You mention you are on Levo so it is possible there is a connection if your T3 is low in range. The 24 hour Saliva test done privately will show more than the one off blood test by the NHS.

If you have some recent thyroid results with ranges I am happy to make suggestions.

[Greypaws in reply to Marz]

Hello.

Thank you for replying.

My recent thyroid function:-

TSH 0.01mu/l. (0.34-5.60)

T4 18pmol/l. (7.9-20)

T3 5.4pmol/l. (4.00-6.60)

I have reduced my dose in last few days but not really helping.

[Marz in reply to Greypaws]

From your results it would appear you are not over-medicated as your FT3 is in range. So no need to reduce your dose. How much Levo are you taking ?

Adrenals - have they been tested ?

Low VitD can be linked to insomnia - do you supplement ?

[Greypaws in reply to Marz]

I take 100mcg thyroxine but are currently taking 100/75 alt days.

I do take vit D supplements. Levels were checked recently and okay but not as high as I was expecting after a long hot out of doors summer.

My adrenals haven’t been tested.

[Marz in reply to Greypaws]

Your levels of D are good around 100+ Until recently I had been living in Greece for 15 years and still tested low for VitD so supplement with 4000iu's daily - sometimes more in winter to keep levels up. How much are you taking ? I expect you know that low D can be linked with sleep issues ... lots on the net. When Hypo absorption of nutrients can be impaired .

Magnesium and VitK2-MK7 are important co-factors when taking VitD.

List of private testing companies are on the main website of Thyroid UK. Genova do Adrenal testing.

thyroiduk.org

[Greypaws in reply to Marz]

My level of vit D was 55 in September. I had hoped it to be higher going into winter. I will check out Genova. Thank you.

[Marz in reply to Greypaws]

Lots of research connecting Low VitD to more severe Covid symptoms. How much VitD are you taking ? Sorry for all the questions - just trying to help 🌻

[Greypaws in reply to Marz]

I take Better You vit D and K2 x3 sprays. I think it’s 1000units/spray. It says 3000units per dose which I assume is 3 sprays. I have lost the box.

[Greypaws in reply to Greypaws]

Just had an extra spay for luck. Brings it up to 4000iu 😊

[Marz in reply to Greypaws]

Also good to add Magnesium and VitK2-MK7. Magnesium works with VitD in the body. When taking VitD the uptake of calcium from foods is improved and VitK2 helps to ensure calcium does not lurk in the arteries or soft tissues but goes to the bones and teeth.

4000 iu's is good - based on your results.

grassrootshealth.net

[Greypaws in reply to Marz]

Thank you! Will do.

[MoKayD]

Before B12 shots I slept all of the time but never felt rested. After I started getting my loading doses I had so much energy but for a couple of nights after I got a shot I had trouble sleeping. 2 years in with receiving B12, the shots are no longer affecting my sleep.

I do have what I call "old person insomnia" which means I go to sleep but wake up at 3:00 in the morning and have a lot of trouble getting back to sleep. I've been experimenting with solutions for about a year now and these are some of the things that seem to help; magnesium supplements (I particularly like magnesium aspartate), calcium supplements, getting enough potassium (through food and drink only), I recently discovered tart cherry concentrate (2 tablespoons before going to bed). Also, for some reason, dried mango and golden berries also make me incredibly sleepy. If all else fails, an old fashioned antihistamine will usually do the trick. I hope you find your sleep solution. Lack of sleep is so debilitating.

[Greypaws in reply to MoKayD]

Sorry not to reply. I was sure I had but my reply seems to have disappeared. But I do have a lot of brain fog. I liked the suggestion of the mango.. I have a big bag and love it so will get it out. Also trying the Magnesium.

[Leils]

I have injections every other day at home and I take magnesium glycinate

I sleep really well now after years of suffering

Hope you can improve. Poor sleep is the pits

[Greypaws]

Thanks. It definitely is. It makes me miserable as it seems so pointless. After years of exhaustion the b12 injections are definitely making me better - if only I could sleep 😱😊

[marktwain]

Check ferritin ( indicator of iron stores), consider screening for sleep disorders such sleep apnea. Yes, sleep cycles vary/change with age. Good luck.

[Greypaws in reply to marktwain]

Thanks. I have been taking iron as my ferritin was low normal and blood film suggested I could have non-anaemia iron deficiency. I will get it rechecked in a few months.

[amandaabrams]

No one seems to have mentioned potassium--or maybe I missed it. My son has low b12 and is supplementing, and needs a lot of potassium b/c of the red blood cells that are being created as he's healing. I know when he's low on potassium b/c his tummy starts hurting with meals, and he can't sleep for hours after we turn out the light. I've had it happen once in a while myself; not sure why, but a banana made all the difference. Give it a try--I've heard people say several times that potassium in food or supplements helps them sleep a lot better.

[Greypaws]

I will give it a go. Thank you!