In June I started to feel this calm waterbed feeling or that feeling you get when you are just get a little bit tipsy/buzzed. Found out after going through some blood tests that I have hypothyroid. Been on Levo for about 2 months the 25 mg (or whatever the correct units are). I still have that feeling which appears to be my only symptom (besides the stress and anxiety it has given me). Does anyone else dealing with a similar feeling? I did go to a ear, nose and throat doctor and my balance is good and not being causes by that system.
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Greekcastle92
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
25mcgs is a low starter dose. You should be due another blood test to see where your levels are now and then to get a dose increase.
On lower doses like you are now some people can feel worse than they did before treatment and you're not really likely to notice feeling much better until you get closer to your optimal dose.
Blood tests should be every 6-8 weeks, review of results and dose increase until your TSH is at or below 1 where most people feel better.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Thanks Jaydee. I was on the road when I make the profile but have updated it now! 😊. Thanks for the support. I was talking with GP (Primary Care Physician in the US) and she said we need to get my inflammation down before we do anything else. See my story which I updated. Thanks again. I’ll ask about doing those other tests since I’m due for another blood test this coming week.
TSH about a a 9 (can’t find exact number but was a 9)
Testing in Sept after being put on 25 mcg of Levothyroxine for one month showed the following:
TSH 3.69
Free T3 2.9
FT4 1.2
Please add ranges on results
On levothyroxine TSH should always be under 2. Most people when adequately treated will have TSH around or under 1
Get next dose increase in levothyroxine to 50mcg
Retest in 6-8 weeks
High TPO confirms autoimmune thyroid disease aka Hashimoto’s
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
as young male suggest you get testosterone levels tested too
Hi Slowdragon, I always feel like I'm on a boat (dizzy, unbalanced). I did nonfasting tests for B12, magnesium, iron, ferritin, transferin, folate, and they're in the normal range. My vit D (25 hydroxy) was low and doctor gave me high dossage. Then 3 months later I retested but the doctor used the 1,25 dihydroxy test, and it's in normal range. I'm not sure if I'm still deficient cause I stop taking the D3 for awhile now. Today I did a thermography and the functional doctor was bit concerned with my thyroid cause it showed inflammation (hypo). I have no idea about it cause all my recent bloodworks at hospital were normal. I'm still having these unexplainable symptoms and getting tired with having no clue what's going on in my body. 😰
Thanks for your respond. Sure I will do. I'm not taking any levo cause the endocrinologist thought I'm ok (based on the bloodwork result). Let me post my issues so I can share the details.
I had exactly the same and was diagnosed with vestibular migraines. No headache just constant dizziness and feeling off balance. Vestibular issues are more common when hypo.
I’d describe my feeling something similar except I’m not staggering it just feels like that feeling when just got over the edge from drinking. I’m not staggering or anything but I sense it; it not easy to describe.
Long before I knew I was hypo, I started to feel drunk on half a glass of red wine. I'm not a big drinker, never have been. But I used to love to sit of an evening with a glass of red and a good book. One day I stood up after drinking half the glass and the room was all over the place. I could not walk in a straight line. Since then I've become mostly tea-total as I hated that feeling. But I am sure now it was hypo related.
I can now drink a couple of glasses of wine of an evening, with a meal and after it. But I rarely do.
I will be interested to see your B12 test results. The range for those tests is enormous and not helpful at all. We need to be at the top end.
Hi. Without any other details I am tempted to agree with SlowDragon about low B12. Other reasons for your symptoms associated with being hypothyroid are possibly low iron (quite common even if not technically anemic), low vit D. We are not medically trained on here but offer advice based on our own experiences, but with limited details about your condition that's probably the best I could suggest so far.
Levothyroxine doesn’t “top up” your failing thyroid it replaces it, so important to be on high enough dose
Starting on only 25mcg will make you more hypothyroid
Normally we start slowly, usually on 50mcg daily, but dose is increased slowly upwards in 25mcg steps over 6-18months until on full replacement dose…….usually something around 1.6mcg Levo per kilo of your weight per day. So currently you are likely extremely under medicated
As a young male starting dose should have been at least 50mcg or higher
Retest bloods 6-8 weeks after each dose increase
Book blood retest for early morning, only drink water between waking and test and last dose levothyroxine 24 hours before test
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Just a quick note: i have read somewhere that the initial dosing per weight is not for your current weight. It is for the weight you would have for a BMI 23-24. So even if overweight, the initial dosing is roughly the same. So if for example you have a height of 175 cm, the target weight based on a bmi of 23 should be 72 kg. And the dosing should be 1.6x72=116 mcg. Which is much more logical as an initial dose than the very large numbers resulting from this function using our actual weight.
Low vitamin levels are extremely common when hypothyroid, as we develop low stomach acid and this leads to poor nutrient absorption and low vitamin levels as direct result …..particularly B12, folate, ferritin and vitamin D
Listen to SlowDragon she really nows her stuff and the links she has provided, although UK based, still apply in the US. The illness is the same wherever we are.
As you are young and male, a word of advice from me would be don't wear yourself out with gym or sports work. Pushing through regardless just does way more damage than necessary. Accept that at the moment you are sick and need to rest and get lots of sleep and work on getting well.
I disagree with whoever told you that getting inflammation down was most important. The most important thing right now is to increase your dose of thyroxine as SlowDragon has laid out. The inflammation will hopefully reduce as your body recovers better thyroid levels. And you do have the autoimmune thyroid condition Hashimoto's thyroiditis so inflammation is part of the territory. A gluten free diet might well help that, but first, enough hormone to function on. Until you feel well again you won't want to faff about with diet changes anyway. They are extraordinary difficult to undertake I find.
I have the slightly drunk feeling - permanently. Have had it for several years now along with fatigue, aches and pains, weight gain and lipodema to name but a few symptoms. I have Hashimotos and take 100mg Levothyroxine. I’ve had the Epley manoeuvre several times ( manipulation of the head to try and move fragments floating in the ear) I’ve done various other exercises prescribed by a specialist physio, had CT scans to check for any restriction of blood vessels in my neck and none of it has found anything wrong physiologically or made much difference. It is very tiring, some days worse than others ( tiredness doesn’t help) and I wish it would go away! Btw Dr’s describe it as lightheadedness rather than dizzy because, in my case, it is me that has the feeling of movement rather than the room spinning. I’m sorry you have a similar sensation. I hope you find a solution. If you do, I’d love to know what you found that works !
You sound like not on high enough dose levothyroxine
Suggest you write your own post with recent thyroid and vitamin results
Looking at your previous posts you’re on levo plus T3?
Many members find they need BOTH Ft4 and Ft3 at least 60-70% through range
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hey SlowDragon. I got new blood work results with the extra tests you recommended (see my profile story). I’m curious on your thoughts. I think my TSH is still too high and asking my physician if we can increase my dose.
Do you get migraines or have family history of migraines, before this started did you have an ear infection or some sort of vestibular issue like Labrynthitis or a virus that made you feel dizzy?
Vestibular issues are more common in hypos but they aren't always linked to being on not enough thyroid meds. My imbalance started April 2022 and my thyroid levels have been high, low and middling. Hasn't made a jot of difference to my balance issues.
There's a condition called PPPD that sounds very similar to what you are describing. Try Googling it and seeing it rings any bells. Vestibular migraines also cause dizziness and dysequilibrium but often without any head pain.
I do not have migraines or family history of migranes or any other issues like that. I do agree that the sensation I feel sounds like a symptom of PPPD though I hope it might be hypothyroid. The interesting part is I feel it less outdoors.
It could be a kind of visual vertigo, I've often had the same experience. Probably because there's more space outside. Indoors everything is more crowded and in your face. Supermarkets used to be terrible for me. Vestibular rehab exercises can really help.
I think the other point I wanted to make is that not everything is necessarily related to thyroid. When we have a chronic condition we tend to look to that if a new symptom develops, but that can be dangerous if we dont realise it could be something new and unrelated. Funnily enough two other members have recently been diagnosed with vestibular migraines and they report exactly the same feelings of feeling drunk.
Yes - totally agree. And that is what the medics say too. Problem is unpicking it all to find the right treatment to stop it. I know from the physios it is a quite common persistent problem - not just in people who are hypothyroid.
My Mother had migraines as does my sister. But not me. I have tinnitus and I think probably meniere’s though not officially diagnosed.
As I say v long list of things.
Hope Greek castle finds the right treatment. Lots of things to test and try. One may work for you. Sorry to intrude…. hope some comments helpful.
Thanks, Nightingale. It’s good to here that someone felt the same way. It’s hard to describe to the doctors because they say are you dizzy or feeling of vertigo which I don’t really have but seemed like the only way to describe it until I found the slightly tipsy analogy
I really did feel as though I had a micro-brewery going on inside of me, and is a perfect way of describing the feeling. Hope you soon manage to raise your levels and feel much better.
Oh my god that's a great way of describing it - the tipsy waterbed! I have been experiencing the same thing for so long, it's not quite dizziness, it's not tingling in my skin, it's not vertigo, and people tend to look at me blankly when I try to describe it! The best way I've found is that it's a bit like having gently fizzy water flowing through my veins. It's like a floating feeling, as if I'm about to start bobbing about like a helium balloon, but there's a paradoxical heaviness with it too. Sometimes I feel like I'm walking on the moon, trying to control my body when the gravity feels like it's turned up too high AND down too low at the same time - so a bit like being drunk.
Sorry, guess the waterbed analogy really clicked with me! I am in a similar position to you I think, on a lower dose of levo (50ug for almost a year) that has everyone on here going, OH HELL NO, and trying to work out what's thyroid, what's something else, what's vitamins, and whether anything else is going on 🤪 Though I have had a lot of other symptoms too, this one is something that just gives me this pervasive feeling of Wrongness all through the day that's hard to ignore.
Last week my doctor somewhat grudgingly upped my levo at the weekends to see how it goes, and after getting some borderline/low test results I've started supplementing iron/ferritin, vitamin D, and magnesium to help the D along. Worth a shot looking at getting those tested plus B vitamins as others have said.
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