I NEED SLEEP Please help advise More info added... - Thyroid UK

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I NEED SLEEP Please help advise More info added to post please read 🙏🥵😭

sunsation1 profile image

Is it safe to take 1 nytol pill to help my sleep for one night as haven't slept for more than 3 hours per night in last 2 weeks.Any advice please i just need a good night's sleep so badly 😴 😫 also when I wake up im wired have shaky hands etc and feel like legs are numb etc gp just keeps prescribing anti depressants and says its all in my head

When I wake up I feel like I'm shaking all over have a heart rate of over 100bpm and my temp is higher than normal at 36.9 usually I am around 35.6 to 36 could this be due to elevated T4 or is this anxiety based any views would be helpful.I have the shaky hands feeling all through the day and dead legs also fuzzy head most of day too.Im also experiencing bouts of high temp through day and sweating more than usual.

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i started taking igennus magnesium complex plus magnesium oil. i now sleep like a baby a lot of sleep issues can be linked to magnesium deficiency also sex hormones can interfere with sleep e.g. surges of oestrogen so maybe look into that

i found taking sleeping tablets made my hypo symptoms worse

sunsation1 profile image
sunsation1 in reply to london81

I'm 54 well past sex hormones and think magnesium gives me a bad tummy

lisabax profile image
lisabax in reply to sunsation1

I use a magnesium sleep spray that works really well and it can be sprayed on arms, legs or tummy

There are many different types of magnesium; I think it's SeasideSusie who knows all the different types & their uses

SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

Different types of magnesium explained in these links:

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Could this work

Is this any good
SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

It contains magnesium oxide which is the least absorbable of all forms of magnesium, it's usually used for constipation. If you check out the links I gave you you'll see that.

Also, it contains zinc, and zinc and copper should be balanced. We Hypos tend to have one high and the other low, so we shouldn't really supplement with zinc unless we know we need it.

Ok will look for an alternative thank you for your help

Sorry to hear this. How is your iron/ferratin levels? My sleep worsens when they drop to a certain level. How about your vit D3? Think is a link with better sleep and optimal vit d3 levels. I'm taking magnesium glycinate and 2 capsules of valerian to help me sleep

sunsation1 profile image
sunsation1 in reply to Imaaan

All my levels are normal apart from t4

JAmanda profile image
JAmanda in reply to sunsation1

I couldn’t sleep at all when my t4 was low in range.

sunsation1 profile image
sunsation1 in reply to JAmanda

My t4 is high 32

JAmanda profile image
JAmanda in reply to sunsation1

I can’t stand my t4 at all over range either. I try to help both t4 and T3 high in range. I sleep a fairly uninterrupted 7 hours now. I’d really aim to normalise your thyroid levels - all else is tweaking. I did take magnesium for a long time and that certainly helped sleep but for me it was about getting my T3 and t4 high but not over range.

I’ve not taken Nytol but have taken Sominex in the past, which is similar & checked with my local pharmacist that this was ok with my thyroid meds. I always ask a pharmacist re interactions with anything I take over the counter or have been prescribed, as I find they are very knowledgeable. I’ve found magnesium glycinate useful & take before bed; this type is more gentle on the stomach.

I take Magnesium and Selenium after supper. I also make sure that I have a fatty/sugary snack before bed time (rice pudding is ideal) to ensure that I don't wake up either in the night, or in the morning, feeling hungry. But what has worked best for me is getting up early (no later than 05:00, and keeping on the go as much as I can through the day.

Full bloods

FBC

Hey there again ;

I'm sorry you are not sleeping and would think this is related to your doctor reducing your T4 medication by too much, too soon and your whole bodily system becoming totally confused.

Do you have a T3 result, alongside this T4 of 32 as I'm sorry but I can't seem to see one ?

I hope the Nytol worked and think you need to see the doctor again to discuss these new symptoms since this massive dose reduction.

Doctor only reduced by 25mgs after I spoke to them my t3 is ok

T3

T3 results

Hello sunsation1, your FT4 is over range but the printout doesn't include FT3. T4 is a relatively inactive storage form of thyroid hormone but T3 is the active thyroid hormone in the body. Most patients achieve maximum symstom relief when FT3 is in the upper half or even upper quarter of range. I suspect you may be a poor converter of T4 to T3, but it's impossible to say for sure without both an FT3 test result and an FT4 test result from the same blood sample. Many hypothyroid patients need T3 madication as well as T4, but it's very hard to get T3 on the NHS. We've had to go private to get T3 prescribed.

T3 is 5.8

OK then glad you got that sorted out ;

OK from what I can see your T3 is 5.8 ? - Please confirm as I can't blow up or reduce this page any further :

If so you are not over medicated as your T3 is in range :

The logical solution is to drop a little T4 - Levothyroxine BUT add in a little T3 - Liothyronine so to keep both T3 and T4 in the ranges, and balanced at around of 1/4 ratio T3 to T4 :

T4 is a storage hormone that needs to be converted by your body into T3 the active hormone that the body runs on. T3 is said to be about 4 tmes more powerful than T4 with the average person neding to find and convert around 50 T3 daily just to function.

Your abilty to convert the T4 into T3 can be comprimised by low vitamins and minerals and read ferritin needs to be at least over 70 for thyroid hormone conversion - and I know from experience that I need my ferritin at around 100 to fully utilise my thyroid hormone medication.

Since you haven't a thyroid you have lost all that this gland does and supported you with.

The thyroid is a major gland responsible for full body synchroniation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

The thyroid also supported you with more then T4 - it actually supported you daily with T1. T2 and calcitonin plus a measue of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

Some people can get by on T4 alone, some people find that T4 seems to stop working for them at some point in time, some people simply need both T3 and T4 prescribed from early on in their recovery programme and some people need T3 only, just as some people need to take Natural Desiccated Thyroid to restore their well being.

I failed to acquire any treatment options other than T4 - Levothyroxine so I have now been self medicating for the last 3 + years and am much improved and have my life back thanks in most part to this amzing forum and a couple of books.

My t3 is 5.8

Yes, so your T3 is in the range so you are not over medicated and you didn't need a dose reduction

BUT you do need to improve your conversion of the T4 into T3 : as then this high T4 will reduce and your T3 will increase and the natural balance of these two vital hormones reinstated.

The acceped level of conversion when on T4 only is said to be 1 / 3.50 - 4.50 : T3/T4 :

with most people feeling at their best when they come in at around 4 or under:

So to find your conversion ratio you divide your T3 into your T4 and yours is 5.80 / 32 which works out at a conversion ratio of around 5.50 : showing your conversion compromised :

Optimal vitamins and minerals will help improve this ratio : and optimal vitamins and minerals are needed which ever thyroid hormone replacement you choose to take anyway.

Since you have had a medical intervention and " lost " your own thyroid I just think it makes sense to replace like with like.

Since by not replacing you own lost T3 production, you have, in effect, been down regulated by some 20% of your overall well being and given time, I believe this pulls you down even further.

Where can I get help for t3 or us there something I can buy that will help am desperate As not under endo only gp endo referrals are 18 months and I cannot afford to go private been off work 3 months now

Stourie profile image
Stourie in reply to sunsation1

Dr Barry Peatfield told me to take selenium to help with conversion. That must have been about 10 years ago but I’m on t4 and t3 now. Jo xx

sunsation1 profile image
sunsation1 in reply to Stourie

Will look into it if nothing else works

Picture

I can't see this too well but see ferritin at 54 - I need mine at 100 for optimal thyroid hormone conversion and everywhere I read said ferritin had to over at least 70 for thyroid hormone conversion:

I also maintain my folate at around 20, active B12 at around 70 ++ (serum B12 500 +) and vitamin D at 100 :

Vitamin d is 170 at mo

helvella profile image
helvellaAdministrator in reply to sunsation1

I have just removed the image from your response as it clearly included a doctor's name.

Please ensure there is no doctor's name, nor personally identifying information, and re-post - you can edit your response so it ends up in the same place.

sunsation1 profile image
sunsation1 in reply to helvella

Sorry

What have you been self medicating with

Please pm me with info

Having failed to get any help through the NHS I have tried both alternatives : a T3/T4 synthetic combo and that worked :

I then tried NDT and this is the medication I have settled on as it feels softer on my body.

There isn't a quick fix, it takes time and in the first instance I suggest you try the appropriate NHS channels, start reading up and take back some control of your health, starting first with building up your core strength vitamins and minerals.

Nothing

T3 - Liothyronine is available but not through your doctor any more .

You need a referral to endocrinology to be considered and sadly it's not a done deal as it is a post code lottery throughout the country, and depending on where you live, if your CCG allows new prescriptions as it is all cost related - which is unfair - but that's where we are.

Thyroidectomy patients are likely seen more sympathetically than RAI thyroid ablation patients.

You have had a medical invention and the thyroid removed, the penny may drop - but doubt the computer is pre programmed for thyroidectomy patients and so you need someone with some basic thyroid knowledge and understanding to think .

If you go into openprescribing and then analyse - you can see by CCG and / or surgery just how active your area is in prescribing Liothyronine.

Thyroid UK hold a list of sympathetic, supportive endos and specialists NHS and private, who are more likely to prescribe T3 - so if you don't succeed and need to ask for a referral, choose someone who is likely to be supportive of your needs and not the dogma that seems to be being spouted as " gospel " by some NHS employees.

What is CGG

The official title is the Clinical Commisioning Group :

Basically a group of people, some of them doctors, who decide where to spend the medical budget for your area.

T3 has risen in price over the last 20 years by about 6000% though still only a few euro's / pounds / dollars in other countries :

Rather than switching suppliers, as would any other proactive procurement office the NHS decided not to buy so much of it and stopped doctors prescribing anything other than T4 - Levothyroxine, so you doctor, even if he knew the answer, may find himself in a strange situation if he wants to keep his job.

I know - say no more :

Fab thank you

Excellent message pennyannie ....great & helpful....thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to sunsation1

I have removed photo

Suggest repost this image without personal details showing

Hi there, I go down the herbal route of Yogi bedtime tea, works a treat and no hazyness in the morning.

Anxiety and the other symptoms you describe could be a result of inadequately managed thyroid problems. Pls provide your latest blood results and we’ll have a go at some analysis! I had anxiety last week after a dose increase so have reduced slightly and all almost back to normal. You could be over or under medicated - thats the pain about thyroid disorders, its all trial and error.

Just seen your update. T4 well up so there you are. Job done lol.

Gp has dropped my dose by 25mgs

Dare I say it - if that is your doctor’s attitude then I think you need to find a new doctor.

I tried Dr Bach’s Rescue Remedy Night capsules recently when I was very stressed about something and I had to be wakened in the morning because I was still out for the count. Don’t think I felt hung over either.

What I do when I can’t sleep (or any time I want to de-stress) and that always works is -I think it’s called ‘box breathing’.

You breathe in to a count of four, hold your breath for a count of four, breathe out for a count of four, hold that for a count of four then breathe in again. After a few of these I get off to sleep.

Cant change gps at mo hard enough trying to see one I have at mo

I have taken Nytol with very good results. I mentioned it to my dr when she asked me how I was sleeping and she muttered something about I shouldn’t think just because it’s herbal it’s ok but she didn’t say I shouldn’t take it. I hope you find some relief quickly.

sunsation1 profile image
sunsation1 in reply to Niteflite

Thank you

In answer to original question nytol won't hurt but doubt it will help, did nothing for me. But we are all different. I begged my GP for just 1 sleeping pill, just 1 I was so desperate. He prescribed 28 and see him again after. Pharmacist said take for 5 nights then 3 nights off then another 5 and so on so did that. Not the best sleep at first but improved... And it was sleep😃. Took them for the month 5 on 3 off and by the end was sleeping without them. GP said I just had to break the cycle of not sleeping. Have you asked GP for sleeping tablets for a short time? I have Zoplicone an if ever get sleepless again take for 3-5 nights and usually sleeping again. Do you take anything with biotin in? If so did you stop for 3-7 days before blood test?

You need b12 higher. Have you had iron status tests done? Your ferritin is a bit low so best to check iron status before supplementing.

Do you have Hashimotos? Wondering if 32 ft4 was a flare. 5.4 ft3 when ft4 32 screams bad conversion but you could do with anti bodies testing same time as the free t4 and free t3 after 6-8 weeks on reduced dose Levo to try and get some idea what is going on.

Thank you my gp wont give sleeping pills at all

Had thyroid removed 31 years ago

Also have no thyroid

I don’t know if this was the reason but I started to sleep really well and stay asleep all night when I changed to taking my Levo late before getting into bed. Before doing that every night was a challenge.

I have been taking thyroxine for 30 years and don't think its to do with taking the medication im suffering with high T4 at moment

I take amitriptyline, just a sedative no ill effects on waking .I suffered with insomnia for years . I now sleep right through the night. I had a long list of awful symptoms no help from doctors or endocrinologists (4) only allowed thyroxine which did help up to a point I still felt so ill After years of suffering I decided to self medicate I chose thyrogold the best thing I could have done most of my symptoms disappeared. Due to the pandemic it became unavailable I had to find an alternative after much searching I now self medicate with thyroid glandular ( forefront health) sold as a supplement so no prescription needed, amazing the difference it has made to my life.

sunsation1 profile image
sunsation1 in reply to Jaybrooke

I have to take levothyroxine as have no thyroid at all and do not want to take antidepressants

Jaybrooke profile image
Jaybrooke in reply to sunsation1

Amitriptyline is not an antidepressant only a sedative, I became hypothyroid in 1995, over the years I had no help from doctors or endocrinologists as I mentioned, I had a long list of symptoms including foggy brain, numbness in legs and feet, lack of concentration, difficulty swallowing, pain in joints and muscles wooziness, inner tremors throughout my body, thudding heart , palpitations, insomnia and dreadful fatigue , I was shouted at told I was a stupid woman , it’s all in your head , there’s nothing wrong with your thyroid you’re just imagining things because my blood tests came back normal . They wouldn’t prescribe thyroxine even as a trial bearing in mind all my symptoms. I eventually paid to see a private doctor who ignored the blood tests and prescribed thyroxine low dose 25 mg s upping it over the months. It certainly helped with some symptoms but I still felt so ill this went on for 19 years , struggling to be a wife a mother a grandma. This is when I decided to self medicate with thyrogold and as I said earlier , amazing , this is the best I have felt in 26 years. I realize you have no thyroid but thyroxine may not work for you or perhaps a higher dose , maybe T3 added or possibly a natural dessicated thyroid . I lost faith in doctors and endocrinologists long ago many know very little about hypothyroidism or hashimotos and the correct treatment . Don’t be like me and waste years it’s your life don’t be intimidated by your doctor , it’s no use to you if the t4 (thyroxine) is just circulating in your blood , it needs to get to all the cells in your body if it’s not changing to T3 the active hormone it’s no benefit at all . Hope this helps

sunsation1 profile image
sunsation1 in reply to Jaybrooke

Thank you

tattybogle profile image
tattybogle in reply to Jaybrooke

Amitriptyline is most definitely an antidepressant , (tricyclic antidepressant) however at LOW doses it does have other uses eg.

It can be effective for nerve pain.

It can also be useful for insomnia because it DOES make most people sleepy if taken a few hours before bed.

I've tried it very occasionally for just a few days at a time to help with insomnia , and also nerve pain.

However i found that while it did give me the first decent nights sleep i'd had for weeks , which was good ... after only taking just one low dose amitriptyline at about 8pm at night , the next afternoon i had a bump in my van at about 4 pm , which cost me 9 yrs 'no claims bonus'... i guess i was just 'not quite on the ball' ... and it wasn't anywhere near as good for the nerve pain as Dihydrocodiene was.. so on balance i'd prefer not to try it again.... or at least if i did, i wouldn't be driving the day after.

I definitely wouldn't fancy taking it for a long period.

could you clarify the dates of your doses changes and results please ?I think your post of 6 days ago said you'd been on 150 mcg for ages , then you felt bad ,then over range fT4 was found, so then dose was reduced by 50mcg 2 weeks before you posted, but this post seems to say dose reduced by 25mcg after speaking to doctor.

So how long have you been taking the lower dose now ? , and is it 125mcg , or 100mcg ?

I can see a test from 31 Aug saying

"TSH 1.3

fT4 32 [10-22]

previous TFT's analysed on 25/8 , 24/8 , 12/7 . Repeat not indicated"

Above that there is a picture of a different test , but its too hard to read the numbers.

looks like :

10/??/21 (edit 08/08/21 )

fT3 5.4 ? [3.1-6.8]

fT4 31.4 [12-22]

TSH 0.29 ? [0.27 -4.2]

if you could give us the information more clearly on date of tests and dose change(s) people will be able to advise you better.

Test result

Test Result

yes , i could read that one , and it seems to be for bloods taken on 31st August... so 2 weeks after reducing from 150 to 125mcg ?

the ?? 's were for the one you put a picture of above that, which was impossible to read.

So how many days have you been back on 125mcg now ?

I have been back on 125mgs for 1 week so I've had 2 weeks on 125mg and one week on 100mgs in last 3 weeks

I have been taking the lower dose of 125 for since the 17th aug I was in hospital then they wanted to drop down to 100mgs which I did for a week but then made gp aware of nice guidelines and said dropping by 50 was to much so was put back up to 125 as hospital were not aware it had already been dropped. Monitor health test was done on 7th Aug then my tsh was lower and so was my t4

More

yes , but unfortunately we can't read it , which is why i asked if you could type them out.

Sorry which one monitor my health or NHS my brain is addled

This one Monitor my health

10/08/21 ( 08/08/21 )

fT3 5.4 ? [3.1-6.8] ... does it say it 5.4 ?

fT4 31.4 [12-22]

TSH 0.29 ? [0.27 -4.2] ... does it say 0.29 ?

Yes thats right

:)

thanks x

Sorry to be a pain

No worries .. lack of sleep and trying to organise numbers and date's do not work well together , so no one blames you . xx

Thank you feeling awful tbh x

So i have 2 thoughts first one is that dropping to 100 for a week will have messed you up a bit , and it will take at least week or two to get settled on 125again .... so hang in there.,....thing's may slowly improve anyway .

Second one is , what sort of fT4 /TSH levels did you 'usually' have on 150mcg .. (before you started feeling wrong ) ?

My suspicion (based on fT4 being so over range), is that you did need a slight reduction of Levo , (for whatever reason the dose of 150mcg had become too much) and the high fT4 was what was causing you to feel bad.

and if they'd left you alone on 125 you might be feeling quite a bit better by now, but another drop so soon has thrown you., so it will now take a bit longer to see if 125 brings an improvement.

Some of us are very sensitive to even very small changes in dose like just 12.5mcg reductions.. so what you've just had, ie, down 25,and down 25,and then up again over 3/4 weeks is a lot to handle .

I have been feeling really rough for nearly 4 months now and have been off work for 9 weeks cant do anything just about get up each day cannot walk more than 200 yards before my legs feel like there going to give way plus lack of sleep and not wanting to eat and all other earlier mentioned issues

😭

If it's any reassurance, i once felt similar when for no apparent reason my fT4 went increasingly over range, even though i was on the same dose i'd been on for years. A reduction from 125mcg to 112.5mcg was difficult for about 5 weeks, and i thought the GP was wrong but then gradually i felt a lot better and was sleeping better than i had for years , and my legs stop conking out half way to the shops and some unexplained back /kidney type pains i'd been having disappeared.. and now i can walk miles again.

( Unfortunately , like you ,i was asked to reduce by another 12.5mxcg to 100mcg in the middle of this , which i did for 8 weeks , but it left me constipated so they put me back up to 112.5mcg... and then very gradually i felt better.)

Sorry this is no real help , but just to let you know that in my experience 'too high Ft4' is capable of making you feel this dreadful, , and sudden ups and downs in dose are also capable of making you feel dreadful ... so hopefully a few more weeks on a stable dose of 125mcg may improve how you are feeling .

I can't 'prove' that just fT4 being too high (without fT3 being too high) can make you fee really ill... because I don't know what my fT3 was when i ended up with very high fT4... my GP 's have a brilliant habit of measuring my fT3 when it's not very useful, and NOT measuring it when it would be interesting.

..... but i think it does make sense to get settled with your fT4 lower and then see how you feel .

Agree luckily in hospital 2 weeks ago or this issue wouldn't have been picked up. I had to speak to endocrine nurse yesterday for adrenal scan result and questioned her.She rang me back to say looking at my thyroid results going back to 2017 that they have been all over the place.My T4 has been elevated for some time and she will speak to endo on Monday to get him to have a look even though I haven't been referred for that issue so fingers crossed.Think possible that my T3 may not be converting my T4 properly.Hopefully it will get sorted soon as been off work 9 weeks not sure i will keep my job if it gos on much longer x

May 2020Tsh was 13

T4 was 19

Oct 2020

Tsh was 0.4

T3 was 5.4

T4 was 26

Jan 2021

Tsh was 0.77

So fT4 seems to have been rising slowly over the last year until it was over range in Oct, which is maybe what you'd expect if the dose of 150mcg had become just a bit too much ?

And then after a few moths more it's got so much it starts to make you feel really unwell.

And in an ideal world the GP would have just noticed it over rage in Oct , watched and waited , and then lowered it slightly in January if fT4 was still over range, and maybe you'd never have felt crap.

(well that's my nice simple theory anyway....)

........unfortunately that's not what happened, and instead ,you came across Tom and Jerry who went for 'juggling your doses like plates in the circus', and 'not testing your fT4 in January when it might have been useful.'

Was your TSH really 13 in May 2020 ? or is that meant to say 1.3 ?

If it was 13 , any idea what happened to cause that.ie.. did you have a period of time of not taking Levo for some reason ?

No not a mistake was really 13 may 2020

Oh ..

well that is indeed a bit odd..

i'm all out of 'nice simple theories' for that one.

About 8 years after my RAI ablation my TSH went up to 15 before it nosedived all by itself back down to 0,01 where it generally lives :

This was when my thyroid totally packed up, and I became more unwell, as per my profile page.

The TSH was originally introduced as a diagnostic tool and was never intended to be used once the patient was on any form of thyroid hormone replacement.

Since you haven't a thyroid the TSH is a totally useless measure of anything as your internal feedback loop in not complete and can't be relied upon for any readings.

Your Hypothalamus - Pituitary - Thyroid - the HPT axis - which doctors rely on, does not work any longer - you haven't a thyroid and - the T in your thyroid has fallen off the radar and this feedback loop broken and you need monitoring and dosing on your T3 and T4 blood test levels and if on T4 only you need to balance T3 and T4 at around a 1/4 ratio - T3/T4 :

Will ask endo nurse when she calls me Monday or I will be reporting gps

2020

Did GP say anything about it ? (wouldn't surprise me if they didn't .. i once stopped Levo for a week and a half then took it for just i day before blood test , just to see if they could actually tell anything useful from a blood test .. my Gp never said anything to me at the time , but when i got my notes years later TSH had been 7.9 with lab !!! 's all over it )

Is it just the one weird TSH , or have they been all over the place too ?

Up and down but not to that extent again

well i guess it's good that the endocrine nurse was interested enough to have a look..

I really hope you start to feel a bit better soon.. fingers crossed (fingers also crossed that she finds an Endo with a brain to ask)

x

Luckily one of them is best in south

helvella profile image
helvellaAdministrator in reply to sunsation1

I have removed the image as it included a doctor's name.

Please make sure the image has no doctor's name, nor personally identifying information and post it back in the same response.

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helvellaAdministrator in reply to sunsation1

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Please ensure such information is removed - then edit your response to put it back.

sunsation1 profile image
sunsation1 in reply to helvella

Sorry

They were deemed normal for my age and had menopause when I was 40

I know am thinking there may be conversion issues

Hoping for a referral

I know but I need to be able to sleep as cannot function at all

Thatd been dropped to 125 instead of 150 but its more than that I feel as levels been off with T4 for years and gp not addressed at all

Thats what I used last night I slept 6 hrs which is better than 3 I just want to be well enough to be able to go to work being off 8 weeks is putting my job at risk and I live on my own so its hard

Gps are useless they don't even tedt T4 normally one said didnt need it as have no thyroid

8 weeks off sick

I never see the same gp my thyroid was removed 31years ago due to thyroidtoxicodis

Not really as small firm only 4 staff

The one thing that has helped me the most with both sleep and anxiety is 5HTP. I don't take it everyday because habitual use makes me too sleepy. I keep the bottle by the bed and if it seems it will take a long time to get to sleep I take one. If I wake up in the middle of the night or just too early, I'll take one more. If I have an appointment or something that will definitely cause anxiety tomorrow I take two before bedtime. It's inexpensive. Good luck

sunsation1 profile image
sunsation1 in reply to Phil865

Thanks

Surgery as I went into thyroid crisis

Thank you - yes, quite likely but not the amount that was actioned.

Your comment to me about the T4 being too high :

I've tried that no good for me

I have Hashimoto's been going through bad depression and was not sleeping doctor recommended that I start taking 200 mg L-theanie … I’d it was wonderful I can’t believe how it work so fast for me. Please go on line and read about it wonderful.

sunsation1 profile image
sunsation1 in reply to Tweedydo2

Thank you but I want proper medication as my health is compromised and feel your comment is not relevant😱😱😱

RedApple profile image
RedAppleAdministrator in reply to sunsation1

sunsation1,

I believe Tweedydo2 is genuinely trying to offer help based on her own experience.

Here's an article about l-theanine that may be more helpful. medicalnewstoday.com/articl...

Of course, everyone is different and this supplement may not be beneficial to you :)

sunsation1 profile image
sunsation1 in reply to RedApple

Ok

sunsation1 profile image
sunsation1 in reply to RedApple

Just when I clicked on link nothing there

RedApple profile image
RedAppleAdministrator in reply to sunsation1

The link works for me. Can you try again, it may have been a temporary glitch.

sunsation1 profile image
sunsation1 in reply to RedApple

I tried and it went through but I don't want to try anything that may not be right till I have endocrine nurse advice on Mon x

RedApple profile image
RedAppleAdministrator in reply to sunsation1

That's fine, hope the endocrine nurse is helpful for you :)

When I was very sick with Lyme disease and v poor conversion of Levothyroxine to T3 I had nights when I didn’t sheep for even an hour. Looking back I don’t know how I got through it. I was at my worst. The one thing that did help a bit was sub lingual melatonin drops. They are not easy to get hold of but quick silver do them. Other brands may also make this type of melatonin too. Initially it just wired me but after a few days they started working. I still take one drop at night along with magnesium glycinate and I manage to get 6-7 hrs regularly.

Nytil is ok / it’s just a strong anti histamine but it can make you drowsy & groggy the next morning.

As I realise now sleep is so important as it’s when our bodies heal and detox. So I hope you can get some sleep.

Take care x

sunsation1 profile image
sunsation1 in reply to Polly91

Thank you

I'm sorry to hear what you're going through. I've had similar problems with overmedication on t4 and then with not enough sleep, but for me it was related to cortisol levels. I supplemented with adrenal cortex because I had low cortisol (confirmed by a 24-hour saliva cortisol test) and it wasn't until I increased the adrenal cortex and split it 3 ways, 4 hours apart, that my sleep normalised. It was a game-changer.

sunsation1 profile image
sunsation1 in reply to Canu

Test

Test
Canu profile image
Canu in reply to sunsation1

I'm not sure the blood cortisol test is reliable. I think you should do a 24-hour saliva test, which includes DHEA as well as cortisol. You take saliva samples at different times of the day and get a complete picture of what is happening with your cortisol. I'm not in the UK, but I've seen people recommend Regenerus for saliva testing.

This website explains the optimal values for various thyroid-related tests: stopthethyroidmadness.com/l...

There's a lot of information on thyroid and cortisol on this website: rt3-adrenals.org/

Tried the night version didnt work slept 3 hours thats all

Yes blue box is what I took

Hi Sunstation1,

You've had load of great advice about your thyroid situation. I would just add one quick point that I find almost anything can happen after a dose change. It can at times be really awful. But usually after 5 or 6 weeks things will have settled down a bit and you can tell whether the dose change will give an improvement.

But there hasn't been much mention of the two things that helped me with insomnia. I also have no thyroid and have been on very much the wrong medication as times, so had awful insomnia. I tried everything I'd heard of that might help. For me the two biggest helps were:

Taking melatonin. This was originally suggested to me by my GP, but they've now restricted its sale in the UK. You can find it to buy on Ebay. I like NOW brand. Start with the smallest dose you can find, 3mg or lower. For me taking this was a revelation, because within an hour it made me feel sleepy, and I realised I hadn't felt that sleepy feeling for years. Take an hour or so before you hope to sleep.

The second thing that helped a lot was mindfulness medication. I had started it for other health reasons, but my sleep improved, too. I prefer to do it in the daytime, but it still helps with sleep. I strongly recommend one book, I will look it up for you and post below. There are also apps for a smartphone if you use that. The Head space app has a good free trial that is great for getting started.

Or straight away. you can just start off with breathing exercises like Fruitandnut suggested. I like 5-6-7 breathing. Breath in for a count of 5, hold for a count of 6, then out for 7. I also love alternate nostril breathing, look up the details, but basically you hold your fingers over your nose and block each nostril in turn to breath in and out through just one of them.

Lie down on the floor, set yourself a timer for 5 minutes to start with and just do a breathing exercise for that time. If you like it, work up to a longer session, 10, 15 or 20 minutes are a great length to do, you can also continue as long as you like. Ideally once per day but a few times a week is great, too. I like breathing exercises because they are really effective at relaxing the body. Even when you are completely wired a breathing exercise will eventually chip away at it a little, and when you're feeling better you can get into a deeply relaxed state and feel like you're floating on a cloud. I also do these while watching tv, sometimes for hours.

Sorry, I am going on loads about this! But mindfulness and breathing exercises were great for me, particularly while I was at my most sick.

This is the book I strongly recommend:

Mindfulness: A practical guide to finding peace in a frantic world by Mark Williams and Danny Penman.

goodreads.com/book/show/112...

smile.amazon.co.uk/gp/aw/d/...

It is structured as an 8 week course, but you only really need the first few weeks to get great training. It includes guided meditation audio, which are all really brilliant.

Thank you

SlowDragon profile image
SlowDragonAdministrator

When you had TSH of 13 …..in May 2020

how much levothyroxine were you taking

Do you always get same brand levothyroxine at each prescription

Do you always take levothyroxine everyday, always on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

Some supplements like magnesium, vitamin D and iron must be minimum 4 hours away

Exactly what vitamin supplements are you currently taking

Any other medications?

Recent tests

When you had high Ft4…..was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

TSH isn’t very low ……if you took levothyroxine just before blood test high Ft4 is false high result

Legs giving way sounds like you need addition of small doses of T3 prescribed alongside levothyroxine (typically either 2 x 5mcg at approx 12 hours intervals or 3 x 5mcg doses spread at roughly equal 8 hour intervals )

McPammy had similar issues with her legs and is transformed with addition of T3

Was on 150 May 2020 always fast b4 blood test and always had same tablet make mo vitamins taken at all

SlowDragon profile image
SlowDragonAdministrator in reply to sunsation1

So do your thyroid levels go up and down, even if your dose levothyroxine doesn’t change?

With no thyroid, that’s odd….but could be poor conversion of Ft4 to Ft3

Request ultrasound scan of thyroid to check thyroid not growing back (rare but can)

Other explanations on variable levels

Gut issues

Eg SIBO, H pylori

Or gluten intolerant and/or dairy intolerant - both very common after Graves’ disease

Or if levels don’t normally change….

Stress of pandemic could have upset levels

Or Did you have Covid ?

They appear too I had mri scan and to ct scans one with dye 2 weeks ago had a tube into stomach in May all ok and not had covid

SlowDragon profile image
SlowDragonAdministrator in reply to sunsation1

They appear to?

You mean levels go up and down?

First step is to get all four vitamins optimal

Get coeliac blood test done before considering Trial on strictly gluten free diet

Will ask gp yes levels go up and down

Magnesium glycine helps

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