Re: Suddenly feeling very strange

[Guest guest]

HI Tracey

I doubt very much that this feeling has anything to do with your 25 mcgs thyroxine. Especially as you say you have had this feeling before over the past recent months. How long do these episodes last usually. If you want to be 100% sure it is not your thyroxine, then leave it off until this feeling has gone away, and in a couple of days, try the thyroxine again.

I know you have problems with your ears - could this be related? Ask when you have your appointment today. It might be a balance thing.

Luv - Sheila

Hi all,I took my 1st 25 mcg starting dose of levothyroxine at 10pm last night and then went to bed and got on with things as normal. Suddenly about 5 minutes ago I began to feel very drunk and uncoordinated. My head is literally spinning and I feel slightly nauseous. My toes feel like they are going numb and everything seems to be flickering. I have also increasingly felt this way on the odd day in recent months, so it could just be another one of those odd days. This sensation has never come on so suddenly before though. I either wake up like it or it slowly creeps up on me over a couple of hours.Thing is, could this be due to that one small dose of medication or is it simply that I'm going down with something? I have a hearing aid appointment this morning and need to be up to cycling for 2 hours to get there and back.Any suggestions?Tracey

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[Guest guest]

Hi Tracey,

I'm on day 14 and have had loads of problems with the medication. I

felt exactly like you but after day two developed the most

excrutiating headache. I stopped everything else I was taking and the

headaches are better, but I still get them on and off throughout the

day along with my head spinning and feeling sick. I've had a couple

of good days where things haven't been quite so bad, but today I got

up and am feel really weak again. I have no energy whatsoever. I

didn't have much before, but it has gone to a new level now. I hope

someone out there can give us some advice because I was going to stop

taking them, but thought I wojuld carry on to give it a fair trial.

Angie

> I took my 1st 25 mcg starting dose of levothyroxine at 10pm last

> night and then went to bed and got on with things as normal.

> Suddenly about 5 minutes ago I began to feel very drunk and

> uncoordinated. My head is literally spinning and I feel slightly

> nauseous. My toes feel like they are going numb and everything

seems

> to be flickering.

[Guest guest]

Hi Tracey,

In the circumstances I'd tend to postpone your appointment;

sounds like you might have a potassium channel problem.

Just being hypothyroid can affect your hearing.

I got labyrinthitis when I went back to work after some time off.

Had to be driven home again. Blew my nose and just fell over like a

drunk.

best wishes

Bob

>

> Hi all,

>

> I took my 1st 25 mcg starting dose of levothyroxine at 10pm last

> night and then went to bed and got on with things as normal.

> Suddenly about 5 minutes ago I began to feel very drunk and

> uncoordinated. My head is literally spinning and I feel slightly

> nauseous. My toes feel like they are going numb and everything

seems

> to be flickering.

>

> I have also increasingly felt this way on the odd day in recent

> months, so it could just be another one of those odd days. This

> sensation has never come on so suddenly before though. I either

wake

> up like it or it slowly creeps up on me over a couple of hours.

>

> Thing is, could this be due to that one small dose of medication or

> is it simply that I'm going down with something? I have a hearing

> aid appointment this morning and need to be up to cycling for 2

> hours to get there and back.

>

> Any suggestions?

> Tracey

>

[Guest guest]

Thanks Sheila for your reassurance.

It could well be to do with my ears (since the last email, I'm now

getting a loud humming in my head), which is why I'm keen to keep

the appointment. The appointment was to get replacement batteries

and new ear moulds made as my old ones stopped fitting properly when

all that extra weight piled on.

Apart from today, I'm not doing anything demanding this week, so

I'll keep taking the thyroxine and see if my odd feelings get

worse. If it is a typical odd day then it will clear in a few hours

or over a good night's sleep.

I've decided to set off now for my appointment to give myself extra

time to walk if I become too wobbly to cycle. Mind you, the effort

of cycling might click me back into this dimension if I'm lucky ;o)

Did you manage to open that info leaflet page in the end?

Tracey

>

> HI Tracey

>

> I doubt very much that this feeling has anything to do with your

25 mcgs thyroxine. Especially as you say you have had this feeling

before over the past recent months. How long do these episodes last

usually. If you want to be 100% sure it is not your thyroxine, then

leave it off until this feeling has gone away, and in a couple of

days, try the thyroxine again.

>

> I know you have problems with your ears - could this be related?

Ask when you have your appointment today. It might be a balance

thing.

>

> Luv - Sheila

[Guest guest]

> I have a hearing

> aid appointment this morning and need to be up to cycling for 2

> hours to get there and back.

>

I haven't got anything to offer but just wanted to say that my hearing

has been diabolical for years and years and I was fitted with aids in

2005 at 46. I do believe that this may be due to the thyroid too???

Hope you feel more coordinated soon.

luv keri

[Guest guest]

Hi Tracey

This could be of interest:

http://www.endocrine-abstracts.org/ea/0012/ea0012p124.htm

My hearing was impaired as a child T & A's removed, made no

difference. The slightest drop in my thyroxine dose now, the first

thing that happens is I can feel my ears start filling up.

Luv

Chris

> >

> > HI Tracey

> >

> > I doubt very much that this feeling has anything to do with your

> 25 mcgs thyroxine. Especially as you say you have had this feeling

> before over the past recent months. How long do these episodes

last

> usually. If you want to be 100% sure it is not your thyroxine,

then

> leave it off until this feeling has gone away, and in a couple of

> days, try the thyroxine again.

> >

> > I know you have problems with your ears - could this be related?

> Ask when you have your appointment today. It might be a balance

> thing.

> >

> > Luv - Sheila

>

[Guest guest]

One thing that could be a problem for some sufferers is that they cannot tolerate the lactose that is in thyroxine. Do you have a reaction to lactose do you know?

Luv - Sheila

Hi Tracey,I'm on day 14 and have had loads of problems with the medication. I felt exactly like you but after day two developed the most excrutiating headache. I stopped everything else I was taking and the headaches are better, but I still get them on and off throughout the day along with my head spinning and feeling sick. I've had a couple of good days where things haven't been quite so bad, but today I got up and am feel really weak again. I have no energy whatsoever. I didn't have much before, but it has gone to a new level now. I hope someone out there can give us some advice because I was going to stop taking them, but thought I wojuld carry on to give it a fair trial.Angie> I took my 1st 25 mcg starting dose of levothyroxine at 10pm last > night and then went to bed and got on with things as normal. > Suddenly about 5 minutes ago I began to feel very drunk and > uncoordinated. My head is literally spinning and I feel slightly > nauseous. My toes feel like they are going numb and everything seems > to be flickering.

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[Guest guest]

Hope you got on OK Tracey. Let us know what happened. And yes, I did manage to open the patient info. leaflet OK. I couldn't quite believe my eyes when I saw that BTF have now get their names printed as THE authority to contact if people want more info about hypothyroidism. I know so many people who do not trust some of their advice.

luv - Sheila

Thanks Sheila for your reassurance. It could well be to do with my ears (since the last email, I'm now getting a loud humming in my head), which is why I'm keen to keep the appointment. The appointment was to get replacement batteries and new ear moulds made as my old ones stopped fitting properly when all that extra weight piled on.Apart from today, I'm not doing anything demanding this week, so I'll keep taking the thyroxine and see if my odd feelings get worse. If it is a typical odd day then it will clear in a few hours or over a good night's sleep. I've decided to set off now for my appointment to give myself extra time to walk if I become too wobbly to cycle. Mind you, the effort of cycling might click me back into this dimension if I'm lucky ;o)Did you manage to open that info leaflet page in the end?Tracey>> HI Tracey> > I doubt very much that this feeling has anything to do with your 25 mcgs thyroxine. Especially as you say you have had this feeling before over the past recent months. How long do these episodes last usually. If you want to be 100% sure it is not your thyroxine, then leave it off until this feeling has gone away, and in a couple of days, try the thyroxine again.> > I know you have problems with your ears - could this be related? Ask when you have your appointment today. It might be a balance thing.> > Luv - Sheila

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[Guest guest]

Hi Tracey, Angie,

Adrenals? Low adrenal can make you intolerant of thyroid

meds- this results in all sorts of uncomfortable stuff.

Subject: Re: Suddenly feeling very strange

Hi Tracey,

I'm on day 14 and have had loads of problems with the medication. I

felt exactly like you but after day two developed the most

excrutiating headache. I stopped everything else I was taking and the

headaches are better, but I still get them on and off throughout the

day along with my head spinning and feeling sick. I've had a couple

of good days where things haven't been quite so bad, but today I got

up and am feel really weak again.

Angie

> I took my 1st 25 mcg starting dose of levothyroxine at 10pm last

> night and then went to bed and got on with things as normal.

> Suddenly about 5 minutes ago I began to feel very drunk and

> uncoordinated. My head is literally spinning and I feel slightly

> nauseous. My toes feel like they are going numb and everything

seems

> to be flickering.

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing medication.

[Guest guest]

Hi Tracey,

Spinning head - hearing test- tell your audiologist as this may

be due to your ears more immediately ( which can be affected by hypo) than

the T4. But with hypo anything is possible- keep a careful record.

Subject: Suddenly feeling very strange

Hi all,

I took my 1st 25 mcg starting dose of levothyroxine at 10pm last

night and then went to bed and got on with things as normal.

Suddenly about 5 minutes ago I began to feel very drunk and

uncoordinated. My head is literally spinning and I feel slightly

nauseous. My toes feel like they are going numb and everything seems

to be flickering.

I have also increasingly felt this way on the odd day in recent

months, so it could just be another one of those odd days. This

sensation has never come on so suddenly before though. I either wake

up like it or it slowly creeps up on me over a couple of hours.

Thing is, could this be due to that one small dose of medication or

is it simply that I'm going down with something? I have a hearing

aid appointment this morning and need to be up to cycling for 2

hours to get there and back.

Any suggestions?

Tracey

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing medication.

[Guest guest]

Hi all,

I made it there and back in one piece though I had to keep stopping en

route to have lots of wees. I think my fluid retention decided to go

into reverse suddenly ;O) By the time I got to my appointment I was

feeling OK again and went wee wee wee all the way home too!

The weather has gone from sunny and still to extremely gusty with hail

and sleet so its possible my dizziness may have been due to air

pressure changes.

I've had so many adverse reactions to medication and vaccines in the

past that I do worry, often unduly, when I start anything new.

Hopefully, it won't be too long before I can notice a definite

improvement in my condition.

Tracey

[Guest guest]

> sounds like you might have a potassium channel problem.

>

Hi Bob, just spotted your message. What is that? I've not come across

it before.

Looks like quite a few of us have hearing problems here. I know mine

definitely gets worse when I swell up. Hopefully thia will happen less

once my thyroid settles down.

[Guest guest]

HI Tracey

So pleased you managed to make it, even if you did go wee, wee, wee all the way. This happens when you start taking thyroid hormones and seems that you are converting OK to the active T3 as it is the active T3 that makes you go wee, wee, wee all the way. This could be a good sign.

Luv - Sheila

Hi all,I made it there and back in one piece though I had to keep stopping en route to have lots of wees. I think my fluid retention decided to go into reverse suddenly ;O) By the time I got to my appointment I was feeling OK again and went wee wee wee all the way home too! The weather has gone from sunny and still to extremely gusty with hail and sleet so its possible my dizziness may have been due to air pressure changes. I've had so many adverse reactions to medication and vaccines in the past that I do worry, often unduly, when I start anything new. Hopefully, it won't be too long before I can notice a definite improvement in my condition.Tracey

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[Guest guest]

Hi Tracey,

I believe the hearing problem in hypothyroidism is related to the

correct operation (or otherwise) of a potassium channel in the auditory

neurons (hair cells)....

Fluid retention or fluid loss then alters the ratios of potassium to

sodium to magnesium in the blood/serum....

and the neurons take exception to this gross and sudden change.

the vestibular apparatus is the culprit, I think, in balance

mechanisms, whilst the auditory neurons also 'play up' ....caffeine

sets off tinnitus, as might other similar drugs/substances.

Correcting the thyroid hormone imbalances will cause random

disturbances in the way the ear functions.

as also might electrolyte changes.......

this little piggy went to market...etc

best wishes

Bob

>

> > sounds like you might have a potassium channel problem.

> >

>

> Hi Bob, just spotted your message. What is that? I've not come across

> it before.

>

> Looks like quite a few of us have hearing problems here. I know mine

> definitely gets worse when I swell up. Hopefully thia will happen

less

> once my thyroid settles down.

>

[Guest guest]

Bob,

I thought this was a very interesting post.

My mother has hashis which was undiagnosed for years before she

started on thyroxine replacement. She has been on 150mcg eltroxin for

the last 20 years or more.

Around 10 years ago she woke up one morning deaf. She had suffered

major hearing loss, which has got worse over the years, and combined

with a perforated ear-drum she is now almost completely deaf (I think

she is totally deaf in one ear and has around 10% hearing in the

other)

I know it's a long shot, but is there ANYTHING that you can think of

which may be useful to help restoring part of her hearing? The

specialists have been unable to find any reason for the hearing loss

and have been unable to help stem the loss since the first major

attack. However, AFAIK there has never been any link postulated

between her hearing loss and hashis.

Many thanks

Barbara

On 04/03/2008, bob.m9uk <Bob.m9uk@...> wrote:

>

> Hi Tracey,

>

> I believe the hearing problem in hypothyroidism is related to the

> correct operation (or otherwise) of a potassium channel in the auditory

> neurons (hair cells)....

[Guest guest]

Hi Angie,

What dose did you start on and have you had a tendency to have

headaches in the past? My GP gave me a starting dose of 50 mcg but I

have decided to start off on 25 mcg at least for the 1st week - not

that I'm going to dare admit that to him.

After all the weeing I did yesterday, I made sure to drink more

water than I would normally do, to avoid getting a dehydration

headache. I rarely get headaches so if I do develop something like

yours in the next few weeks it will be a result of the medication.

I had a quick Google for other experiences of starting levothyroxine

and don't know what to think. A lot of what people were reporting as

side-effects were the same as my actual untreated symptoms and I

couldn't see how the medication could be blamed for something which

was already there. Maybe those problems went away when the correct

dosage had been reached, though I got the impression that too many

people were giving up well before they reached that stage and so

never reported back.

I suppose the question for you, me and others in early stages of

medication is what is a realistic timescale to start feeling a

genuine improvement? Also, how can we tell if something is a

residual symptom from insufficient medication rather than a side-

effort from too much?

Hope you are feeling OK today.

Tracey

>

> Hi Tracey,

>

> I'm on day 14 and have had loads of problems with the medication.

I

> felt exactly like you but after day two developed the most

> excrutiating headache. I stopped everything else I was taking and

the

> headaches are better, but I still get them on and off throughout

the

> day along with my head spinning and feeling sick. I've had a

couple

> of good days where things haven't been quite so bad, but today I

got

> up and am feel really weak again. I have no energy whatsoever. I

> didn't have much before, but it has gone to a new level now. I

hope

> someone out there can give us some advice because I was going to

stop

> taking them, but thought I wojuld carry on to give it a fair trial.

>

> Angie

[Guest guest]

Hi Tracey,

I didn't have those sort of headaches before. The headaches I got

were the worst I've ever had, but I was taking antibiotics at the

same time as the 25 mcg of levothyroxine and when I stopped them, the

headaches weren't as bad. I've been taking this stuff for 14 days

now, in the first few days I would say all my symptoms got worse

instead of better which was a bit odd. However, I'm tolerating it

better now than I was. The only thing that concerns me is that on and

off throughout the day I get a very dizzy feeling. My head feels

constantly thick and muggy...which it did anyway, but it seems to be

slightly worse than it was.

This is all a bit of a bummer for me as my doc is only giving me a

trial as I;m not officially hypo with my blood test results. I was so

happy when he agreed to give me a trial and thought that I would be

instantly better.....unfortunately it hasn't happened that way and if

anything I think I feel slightly worse. I've also been feeling quite

weak which I don't understand.

I too have been googling to try and find anyone else with these

problems, but no-one else seems to have them. I'm just hoping it's a

time thing and that maybe over the next two weeks things will get

better. I think if it get's to the six week point when I'm due to see

my doctor, and I still feel like this I'm not sure what I should do?

As he's only giving me a trial, I've probably only got limited

options with what he will be prepared to do for me.

I hope you don't get the dizzy feeling today and that it was a one

off for you. I think we're all so desperate to feel better that it

comes as a huge blow when things don't quite go according to plan.

Take care

Angie

>

> Hi Angie,

>

> What dose did you start on and have you had a tendency to have

> headaches in the past? My GP gave me a starting dose of 50 mcg but

I

> have decided to start off on 25 mcg at least for the 1st week - not

> that I'm going to dare admit that to him.

>

> After all the weeing I did yesterday, I made sure to drink more

> water than I would normally do, to avoid getting a dehydration

> headache. I rarely get headaches so if I do develop something like

> yours in the next few weeks it will be a result of the medication.

>

> I had a quick Google for other experiences of starting

levothyroxine

> and don't know what to think. A lot of what people were reporting

as

> side-effects were the same as my actual untreated symptoms and I

> couldn't see how the medication could be blamed for something which

> was already there. Maybe those problems went away when the correct

> dosage had been reached, though I got the impression that too many

> people were giving up well before they reached that stage and so

> never reported back.

>

> I suppose the question for you, me and others in early stages of

> medication is what is a realistic timescale to start feeling a

> genuine improvement? Also, how can we tell if something is a

> residual symptom from insufficient medication rather than a side-

> effort from too much?

>

> Hope you are feeling OK today.

>

> Tracey

>

[Guest guest]

Hi Barbra,

If you look up Pubmed / NCIH and find the OMIM site, that will give

you some data ..

I haven't done it yet, but feel confident that you will obtain a

first clue on that one.

search OMIM on " hashimotos hearing "

best wishes

Bob

> >

> > Hi Tracey,

> >

> > I believe the hearing problem in hypothyroidism is related to the

> > correct operation (or otherwise) of a potassium channel in the

auditory

> > neurons (hair cells)....

>

[Guest guest]

Angie, I'm in exactly the same boat you describe. Not officially

hypoT, on a trial (only after a vicious argument) and completely at

a loss what may happen if things worsen or don't change in the trial

period. I reckon my GP, if he is still my GP, might quietly take me

outside and shoot me!

However, it is still early days for both of us :0)

Tracey

>

I too have been googling to try and find anyone else with these

problems, but no-one else seems to have them. I'm just hoping it's a

time thing and that maybe over the next two weeks things will get

better. I think if it get's to the six week point when I'm due to see

my doctor, and I still feel like this I'm not sure what I should do?

As he's only giving me a trial, I've probably only got limited

options with what he will be prepared to do for me.

[Guest guest]

|You need to have a trial of at least 3 months Tracey, with increments of 25 mcgs ever 6 weeks to see if thyroxine is starting to make a difference. In your case, you see a drop in your TSH.

luv - Sheila

Angie, I'm in exactly the same boat you describe. Not officially hypoT, on a trial (only after a vicious argument) and completely at a loss what may happen if things worsen or don't change in the trial period. I reckon my GP, if he is still my GP, might quietly take me outside and shoot me!However, it is still early days for both of us :0)Tracey>I too have been googling to try and find anyone else with theseproblems, but no-one else seems to have them. I'm just hoping it's atime thing and that maybe over the next two weeks things will getbetter. I think if it get's to the six week point when I'm due to seemy doctor, and I still feel like this I'm not sure what I should do?As he's only giving me a trial, I've probably only got limitedoptions with what he will be prepared to do for me.

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[Guest guest]

Angie and - My Gp wouldnt listen but the endo said we should give me a try on thyroxine. I started on 25 mcg and did start to feel better after a few weeks and didnt have any ill effects. But when I started to feel better I asked the endo if I could up the dose to 50 and he agreed, but i felt really awful, dizzy headachey - even a migrainey feeling, so I dropped back and upped it again 6 or so weeks later and I was fine! Maybe you need to start even more slowly - say 25mcg (is that the dose you are both on?) every other day for a while and then up it again to one a day, then when you increase the dose do it slowly like that. This is what Ive done at every increase and it works for me.

Gill

[Guest guest]

Hi Gill,

Thanks for that. That's exactly how I'm feeling. I've had the most

awful headache all day today and been really dizzy. Can you remember

how long you'd been taking them before you noticed a difference? I feel

worse at the moment. I'm going to drop down to 12.5 and give that a go

for a while and see if it makes a difference.

Angie

>

> Angie and - My Gp wouldnt listen but the endo said we should

give me a try on thyroxine. I started on 25 mcg and did start to feel

better after a few weeks and didnt have any ill effects. But when I

started to feel better I asked the endo if I could up the dose to 50

and he agreed, but i felt really awful, dizzy headachey - even a

migrainey feeling, so I dropped back and upped it again 6 or so weeks

later and I was fine! Maybe you need to start even more slowly - say

25mcg (is that the dose you are both on?) every other day for a while

and then up it again to one a day, then when you increase the dose do

it slowly like that. This is what Ive done at every increase and it

works for me.

> Gill

>

[Guest guest]

Hi Angie - I was ok on the 25 mcg but when I upped it to 50 I felt like this almost straight away, dropped back down and then upped to 50 a few weeks later, but started it every other day. I would try alternate days or splitting the dose in two for a few weeks. If this is a trial I would be inclined to say "yes I do feel better, but think the trial needs to be for longer" or somethink similar that gives you some time - they are unrealistic sometimes as we dont all respond in the same way. Id guess that you are just sensitive to the change and would give it a bit more time - based on my experience. It was amazing that after leaving it longer I was fine when I upped the dose the second time! Im wondering if you get migraines? I do, though not very often these days, and Im wondering if this makes us more susceptible to the thryoid hormones or something??

Gill

Thanks for that. That's exactly how I'm feeling. I've had the most awful headache all day today and been really dizzy. Can you remember how long you'd been taking them before you noticed a difference? I feel worse at the moment. I'm going to drop down to 12.5 and give that a go for a while and see if it makes a difference.Angie>>

..

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