Hi, I haven't slept properly since May after I was overmedicated on DT for about a year. I developed a sleep disorder where I wake every hour on the hour and my heart speeds up then I sweat. I then went hypo- while switching to levothyroxine- tsh 40 at one point, now back up to about 6 but all this time the waking and sweating and heart has continued, I get no sleep. My endo says my symptoms are all hyper symptoms, as I go up in dose they become less violent but they are still there every hour. I am close to euthyroid, but no change in this horrible horrible syymptom. Any ideas? Please and thanks I am so desperate for sleep.
all my symptoms point to hyper but I am hypo - Thyroid UK
Do you have results of your most recent test?
Are all of your vitamins in the ideal ranges?
I am hypo and I do have some hyper symptoms too like anxiousness, very fast heart beat, palpitations, loss of appetite, sensitivity to heat, struggle to fall asleep, mood swings, etc.
I am deffo hypo though.
Also.. I am deficient in vitamins and a lot of these symptoms *can* be explained by that.
Also.. you say you’re close to euthyroid..
Do you mean 6?
(I’m saying this in the sweetest way possible) no you’re not.
My understanding is that a euthyroid is really around 1 -1.5 and definitely less than 2.
Yes, 6 is closer to one than 40, but that’s still enough to diagnose someone as Subclinical hypo!
Also… the above are only true if you’re unmedicated!!!
While taking Levo I have read in dozens of post your TSH should really be “Low” (as I’d you were Hypo), but usually GPs don’t like that and let you stay around 0.5 or so.
Your FT4 should be 75% through range and FT3 (I believe) 50-60% through range.
So it is very likely that your Levo dose is way too low for you.
The guidance also says that you should use 1.6g of Levo for each 1 Kg of body weight rounded to the nearest dose and adjusted based on your personal feelings.
Do you think you’re close to that?
So for example If you’re 60kg (about 9.5 st) your Levo starting dose should be 96g (or 100g rounded off).
You’re saying your symptoms go down the more Levo you take.. to me that means you need more Levo.
This is the perfect time to ensure Vit D3, B12, Folate and iron are in ideal range.
Seeking to achieve 'euthyroid' levels is a complete red herring - even if your endo knows what 'euthyroid' means.
Euthyroid isn't just anywhere in the so-called 'normal' range, as most of them think. A euthyroid person - i.e. one with no thyroid problems - has a TSH of around 1, never over 2 - over 2 means your thyroid is struggling - and at 3 you are technically hypo. But, that person is euthyroid because they don't have any thyroid problems, not because they have a TSH of 1. Looked at like that, you can never be euthyroid, because you are hypo.
Someone who is, or has been, hypo usually needs their TSH a lot lower than a euthyroid person, because they need their FT4 and FT3 a lot higher than a euthyroid person. This is something that doctors just don't understand. When you're hypo, all the normal 'rules' go out the window. Your body no-longer acts or responds like that of a euthyroid body. For example, going on a diet can make you gain weight, not lose it. And, we have to adapt to that new body.
Another problem with doctors is that they tend to divide symptoms into two rigid lists marked 'hypo' and 'hyper'. I've been told I can't be hypo because I'm heat intolerant and have high blood pressure, and those are 'hyper' symptoms. Well, unfortunately for rigid doctors, they can also be hypo symptoms. Many, many symptoms can be of both hyper and hypo. Which is why it's difficult to dose on symptoms alone. We need labs to back up the way we feel. And, with a TSH over 6, you're still pretty hypo and have quite a way to go before you feel well. And, I'm not going to use the word 'euthyroid' because it just doesn't apply.
Having said all that, it is possible to have 'hypo' and 'hyper' symptoms at the same time, because the hormone that you are taking exogneously, isn't distributed equally amongst all your cells. Some may be getting too much - causing hyper symptoms - whilst others aren't getting any at all! Once you get on a higher dose, things will sort themselves out more evenly. So, I'm afraid you'll just have to sit it out til then.
So, how much levo are you taking? And why did you change from DT? I ask a lot of questions, I know, but details are so important to understanding a situation.
And, when you say you were over-medicated on DT, what exactly does that mean? A suppressed TSH? An over-range FT3? What doctors think is over-medication often isn't.
Have you had your adrenals tested? Because waking up like that in the night could be due to adrenal problems, rather than levo or hypothyroidism. So, if you haven't had a 24 hour saliva cortisol test, it might be worth doing so.
I was on DT then suddenly became intolerant of it- just couldn't take any- as i dropped the dose the episodes came on in sleep- waking with sweat, shaking, heart racing, stomach very upset head dizzy. Started in May it is now Sept, I had to start very low on levo 12.5 and work my way up very slowly, each increase about 6 days apart helped nighttime stuff be less violent. Holding at 100 mcg now i get violent ones at 6 AM still, and insomnia becasue it's just work to wake every hour.
I had to start very low on levo 12.5 and work my way up very slowly, each increase about 6 days
You increased your levo every six days? That's much too fast. Should be every six weeks to give your body time to get used to it.
the night events became unbearably violent and I only increased by 6 mcg at a time
How did you manage to measure 6 mcg of levo? Was that a quarter or a 25 mcg tablet. Even so, that would mean that you were increasing by 25 mcg every 24 days, and that is too fast. It should be 25 mcg every six weeks. The fact that your symptoms were becoming unbearable doesn't change that because if you increase too fast, you're likely to make things worse, not better.
done all the tests
the event started with a bout of BppV and then I got tested and found out TSH was suppressed for about a year. I felt hyper and when I tried to lower my dose of NT I eventually got the nasty events every night. I changed to Levo on my own cuz could not tolerate DT anymore it made me dizzy and very ill for 4 hours at any dose, also terrible anxiety at any dose. This all happened after Astra zenica shots too.
Sorry, but what is BppV?
A suppressed TSH does not automatically mean you are over-medicated. As you were taking DT, your TSH was bound to be suppressed because of the T3. That's what it does. But, it's the FT3 the most important number.
The AZ vaccine has had some bad effects on people. Have you read the threads about vaccines on here?
BPPV = Benign paroxysmal positional vertigo
helvella - Abbreviations and Acronyms
Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear on the Thyroid UK forum ( healthunlocked.com/thyroiduk/ ) regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being waylaid by the many irrelevant possibilities that web searches tend to return.
Currently it contains over 700 entries. I continue to update the document quite frequently!
I'm already on 106 mcg, soon for a month, and symptoms are not subsiding- i wak every hour and have really violent events in the AM when I wake sometimes, symptoms only when I sleep.
Well, 106 mcg isn't a very high dose. Most hypos need more than that. And, a month is not very long in hormone terms. When you've been on it for six weeks, get full thyroid testing, and you'll probably find that you're under-medicated.
116 is my starting dose- is that right? they calculate according to weight- I'm 160 lbs, so I guess we will titrate up after 116? I was lighter when I was 30 and i remember taking 120-25 but I'm older now and seem very sensitive to the meds.
I am not wholly convinced of dosing by weight. Having said that, you might find something of interest:
helvella - Estimation of Levothyroxine Requirement in Adults
A discussion about the use of formulas to estimate levothyroxine dosing.
A spreadsheet with several active formulas which work out possible levothyroxine requirements including NICE NG145 guidelines. These formulas are referred to in the document above.
This is an Excel spreadsheet but is likely to work in other spreadsheet software.
Yes, I know endos in the US dose by weight, and I think it's completely potty! You need what you need and the whole idea used to be to start low and increase slowly until your symptoms were gone and you felt well. And, when you got to that point - your sweet-spot - that was your dose no matter what you weighed. The whole point of dosing by weight seems to me calculated to keep the patient ill and suffering. I wouldn't stand for it, myself.
Lots of dose change tends to mess up vitamin levels
Low vitamin D often linked to poor sleep
Low vitamin levels tend to result in poor conversion of Ft4 to Ft3
Low Ft3 can often result in very poor sleep
How much levothyroxine are you currently taking
Do you have Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Only test after minimum of 6-8 weeks on constant unchanging dose and brand levothyroxine
Please add most recent results
Hi Kath, may I ask your age? Could any of the symptoms be contributed by peri menopause or menopause?
I agree with everything that greygoose says.
This must be so tiring and frustrating for you! Have you tried regular Epsom Salt baths? Magnesium would help you with sleep and a lot of the other symptoms too, and Epsom Salt baths are a great way to get magnesium in the body! It’s really cheap (I get 25kg for around £25 on Amazon).
Put 500g in a bath full of water, don’t put anything else just water, Epsom salt and a couple of drops of pure lavender essential oil. Stay in the water for no longer than 20-25 minutes, afterwards you start reabsorbing the toxins of your body from the bathwater. Taking 1.5-3mg of melatonin 20-30 minutes before bedtime will also help. I really hope you get great sleep soon! Best wishes ✨💖
Your adrenal glands will help make up the lack if you don't have enough thyroid hormone. Something has to. This means they will send out cortisol and adrenaline and can make you feel hyper.If you take a cortisol saliva test you can find out if it is too high when it should be very low usually by bedtime. Some adaptogens can support adrenal glands. Ashwagandha is popular. I like L-theanine to help with sleep.
Re symptoms, you can get any of the symptoms of hyper and hypo for either type just you are more likely to to get them with one type. Eg both myself and my mother were hypo I’m overweight but my mother was skinny.
my latest test in August TSH 6.8
When over medicated in June:
I test properly, vitamins are good- how long after I'm clinically euthyroid will it take till I feel better? I will have been on 100 mcg Eltroxin for one month on Sept 27th, testing that day again.
Can you give us the ranges for these results, please? Ranges vary from lab to lab, so we need the ranges that came with your results.
And, it's best if you give the results and ranges for nutrients, because often when we think they're good, they actually aren't. When were they last tested?
There's a strong possibility that even when you're 'clinically euthyroid' you still won't feel better, because that's not the same thing as optimal. I explained about being 'euthyroid' above. It doesn't mean much.
Four weeks is too early to test, you should wait for six to eight weeks before testing.
June results unlikely to be significantly over range
August results obviously significantly hypothyroid
Adrenals working overtime to try to compensate for lack of thyroid hormones ….often results in poor sleep
Takes several months for adrenals to switch back off from going into overdrive, once you get thyroid levels optimal
what do you suggest for TSH value to feel best? thnaks and T4 and T3 levels?
Where you feel well and least symptoms
On just levothyroxine that’s likely high Ft4, near top or just over top of range. Ft3 at least 60% through range. TSH around or under 1.
On NDT or Levothyroxine plus T3, or T3 only, almost inevitable TSH will be very low or suppressed
On NDT, Ft4 is often low, and Ft3 near top of range
On Levothyroxine plus T3, many people experiment with where they like Ft4, and Ft3, but TSH still likely very low or suppressed.
Thanks to everyone on this thread for your help. I slept last night and I have a new regime for sleep. I still have symptoms of course, my dosing schedule was very personal and perhaps wrong but it's what I did, I just followed my symptoms as I had no guidance, just people telling me they wanted me on 75 mcg now, and me saying, that will take me 20 days to get to- I cut pills up, I did what I had to do and I survived somehow.
Thanks for your help!
After such a struggle for so long cortisol is more likely the problem. It would be important to have a saliva only cortisol test. Testing it at 4xs a day. You can buy the kit online. Unless you see a functional medicine dr. They will only test blood or urine cortisol. Only the saliva test will show highs and lows available to your body for sleep or awake times.
What's your magnesium level as low can affect sleep?Karen
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