Hi. I have posted before. I am now 11 weeks after having thyroid removed and am still trying to find the levels. Went to the Dr who was very nice, he said the reason I am not sleeping is because my body is trying to find the right levels. Had no sleep for 2 nights now. So annoying.
Finding the right levels: Hi. I have posted... - Thyroid UK
Finding the right levels
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2Poppins
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I have Graves’ and I have difficulty sleeping and I am lucky if I get 6 hours a night.
I still have my thyroid can you tell me why you had yours removed?
I had thyroid cancer in the left side. All enclosed but had to have the right side removed as a precaution. Was all okay. Dr gave me some Beta Blockers for anxiety but the anxiety is caused by literally no sleep for 2 nights. This has happens since I raised my dose from 2 days of 75 and one day of 50 to 4 days of 75 and I day of 50. Probably too bigger jump.
apologies I just read your previous post.
Do you have any blood results to share with us?
I had a blood test a week ago. The tsh was high at 21 .
When I raised the levels last week, I actually felt really but after a few days the sleep went.
just to add the TSH always lags behind
I think not having a thyroid at all, there are no levels to go by. I am very new to all of this and didn't realise there are so many things to know.
How long do you think I should give when changing it?
We are advised to leave 6 weeks before increasing. I took NDT which contains T3 so I went by how I felt because when you take T3 the affect is almost instant. I have taken levothyroxine years ago but I only took it for about 6 months because I still have my thyroid.
I dont have my thyroid at all. Yes. You are right about 6 weeks but I just don't want to go without any sleep as it tends to catch up with you. The pharmacist recommended Kalms. I did explain to him I was on medication
I tried kalms and I had a reaction to it. It’s worth trying if it helps you. I now listen to waves on my iPhone it helps me to fall asleep but I still wake up very early in the morning
What sort of reaction did you get?
I felt spaced out some herbal stuff doesn’t agree with me so I avoid them now
Okay. Just so hard to know why I have no sleep. I am literally wide awake. In fact I nearly fell asleep at the quiz night.
You would be surprised how many people don’t sleep. I was actually on a site in 3am in the morning and they thought I was American I had to convince them I was not. I even used the name Sleepless in Staffordshire to confirm this 😀
I think the Dr thought I wasn't sleeping because of anxiety but for some reason I just can't which is the cause of being anxious.
I am constantly anxious and the doctor offered me counselling which I declined because I know it’s caused by my thyroid levels
Another Dr offered me the same and antidepressants and I said the same to her. Another Dr agreed with me.
Are you sure it was TSH 21 not Ft4 21
Always get printed copies of test results and ranges
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Easiest option is NHS app, you may need "enhanced access" to see blood results.
If you can’t currently see test results online, simply ask receptionist at GP surgery to give you access. You will need to have photo ID with you.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
On the top of the print out it has TSH (across all investigations) and under value it has 21.42 on 17th March. A month ago it was 23.78 on 19th Feb
Went to the Dr who was very nice, he said the reason I am not sleeping is because my body is trying to find the right levels. Had no sleep for 2 nights now
Well, that sounds like a load of baloney. The right levels of what? If he means thyroid hormone, how can your body do that when you're so grossly under-medicated. Hypos usually sleep more, not less. I don't really think he knows what he's talking about.
You're only on a tiny dose, so you are highly unlikely to find your 'sweet-spot' yet. And if your TSH is over 20, you have a long, long way to go. I think your doctor is probably being too conservative in his increases. Most people tolerate and increase of 25 mcg every day very well. Why is he going so slowly? Before your thyroidectomy, you would have had much higher levels in your blood. Why didn't they follow the normal protocol and give you a starting dose according to your weight? It would have been far less of a shock to your body.
The consultant wanted me on 75 but it was to much at the time so the Dr lowered it. Then too low. Went to 75 for 2 days then 50 for one still too low. Then I raised it and for 4 days I felt really good then no sleep for last 2 days. The Consultant wants me eventually on 75 every day so I am trying to slowly build up to it. Unfortunately when you leave hospital there seems very little help afterwards.
I can imagine. I've never had my thyroid removed but in other situations after-care just doesn't seem to exist! However, what do you mean by '75 was too much at the time'? In what way was it too much? Did they even test your thyroid hormone levels before the op?
No don't think do. They did them after. I went back on 75 but got palpitations again so the dose was reduced. So trying to get back up there.
Apparently 75 is the starting dose for my weight. To be honest I didn't realise there it was so involved. People were just saying things to me which made it all sound too easy
A starting dose is 50mg no wonder you are not sleeping
Is 50 not that high?
It’s a starter dose and you need to increase slowly. Slow and steady is how you treat hypothyroid. It isn’t a quick fix I am afraid
5O mcg levo is not very high, no. But it's a starter dose for people who have been hypo for a long time and need to reintroduce thyroid hormone slowly. That is not your case. Please ignore people telling you you should be starting on 50, I think they're a little confused about your particular problem. 
Oh yes, the do that. But they have no idea what they're talking about.
If 75 is the starting dose for your weight then you must be very small. But, the whole point is, you don't want a starting dose. You want the levels you had before the op - did they ever test them? It's not like someone that has had low thyroid hormone levels for years. I would imagine your levels were good before the op but now they've made you hypo by giving you too low a dose.
Not before the op. Probably a few months before and I was fine before the op. I am quite small. They put me on 50 after the 75 wasn't right and that was a disaster. Couldn't function so It was upped to the 75. I was originally just meant to have 2 parathyroid glands out as they were producing too much calcium but on the scan they found the cancer.
Oh dear, that's terrible. But, pretty sure they're still under-treating you and your palps were due to low thyroid hormone levels, not high levels. Doctors just don't understand the symptoms.
I have had both when I have been under and over. The symptoms do seem to overlap in some people which confuses what is really going on. I have had an episode of palpitations at the weekend after drinking too much coffee which I love. I have to limit myself to 2 a day.
It is a good thing the forum is here because there is really no one to ask. I also have a colostomy so have to make sure everything functions. We have nurses we can ring if we need so there really should be something for thyroid especially when like me, you are new to it all.
There should be. But I'm afraid there isn't.
Your sleeplessness could be something to do with your dose being too low, yes. But so many things can cause it, it's difficult to know. Have you tried taking magnesium before bed to help you sleep?
Which beta blocker are you taking?
Your anxiety is probably due to under-medication. It is often a hypo symptom.
SlowDragonAdministrator
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 too
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
are you in the U.K.
Please add country, gender and age on your profile
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I am not taking any vitamins and live in the UK .
So next step get vitamin levels tested by GP
If they are reluctant to do so privately
Examples of private test results
Medichecks
healthunlocked.com/search/p...
Blue Horizon
healthunlocked.com/search/p...
Monitor My Health
healthunlocked.com/search/p...
Thank you. Will do
I also have a colostomy so have to make sure everything functions properly.
My friend also has one because of Crohn’s disease she takes a lot of vitamins because of absorption issues and is feeling fine at the moment
Glad your friend is okay. Crohns can be so debilitating.
So especially important to regularly test and maintain good B12
colostomyuk.org/wp-content/...
Thank you
I have edited my posts because for reasons unknown I thought you still had half your thyroid. Sorry x
I was severely hypo pre-diagnosis and had a terrible time with sleep. I used to get out of bed and go downstairs to read until about 4am. I could then manage about 3 or 4 hours of sleep when I went back to bed.During the day I was the typical hypo TATT but still had issues falling asleep. It only improved after several increases of Levo.
Just posting this as I know the general thing with hypothyroidism is sleeping more but you'll always get people who don't conform to the typical pattern.
Feel for you but things should slowly get better now.
TSH of 21 means you are likely short of thyroid hormone before you start. Removal of thyroid is likely making it worse/lower and then all the trauma of the operation and cancer treatment etc.Unfortunately it takes a few months to get back to normal as levo is very slow and your body has to use it then to recover/sort of rebuild.
Being low on thyroid various parts of the body behave/suffer differently and people's symptoms vary. I was emotionally all over the place, stay off the antidepressants they are pushing.if you can. my Mum uses sleeping tablets from Doctor at times, she is underactive. I went the other way and had Modafinil to help get me through, people on shift work can have it. It helped with brain fog.I would try to get an appointment and see what they can do to help you get through this period.
Tablets (levo/T4) are slow to get into your system, weeks a weeks for T4 to get to full level. You will go a bit more underactive till it stabilises. It is slow.
I found forum scary at first, as I did not realise it was dominated by 10 to 15% who struggle with thyroid treatment. Most are fine on simpler treatments(T4c/levo only )no reason you are not one of them. You are likely not autoimmune type, which means you miss out on a lot of potential complications.
The whole thing is a lot to take in, especially while you are ill.
a) if you can, keep a note of symptoms and issues. Some also measure waking temperature. Some monitor Blood pressure and pulse.track your weight.
b)Write a list of what do next with Doctor.
a) blood test booking. Get vit b12 D ferritin and folate tested at same time.
c) We tend to do private blood tests to check full thyroid levels. Home finger prick tests are about £30. They give freeT3 and freeT4 results. If symptoms not going these really help work out what is going on.
d) you will need to take it very easy and not over do it. Cut back on all strenuous stuff be sedentary while you heel.
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