thyroid misery

echo beach

Missymoohaa wrote: »

This might sound stupid to people but I've been on Eltroxine for about 8 years. Currently I'm prescribed 150mg daily. Now here's the stupid bit, I forgot to refill my prescription and my last intake of eltroxine was last Thursday morning. I've had nothing since. The last two days are the best I've ever felt in a long time. Woke up feeling fine, instead of the usual sluggishness and literally dragging myself about for about an hour before I come to. Constantly tired and muggy brain are the norm until today and yesterday that is. I honestly feel great and "normal" for the first time in years.

My question is, is the eltroxine causing this sluggy feeling or could my thyroid levels by any slim chance have improved. I'm seriously thinking of waiting a few days (without meds) and see how I go. I don't take any other medications, all else has always tested fine.

Eltroxin has a long duration of action which means that at least some of the dose you took on Thursday is still in your system and most of it was in your bloodstream over the weekend so your change in form may to due to something else, even to a feeling of 'freedom' from daily medication taking.
It would be very foolish to go from 150mcg daily to zero in one go. Being constantly tried and sluggish is not 'normal' and you need to work with your doctor to get to a solution.

inocybe

inocybe wrote: »

I seem to have a pattern of becoming hyperthyroid, taking meds, being ok for a year or so after stopping meds and then levels slowly creeping back up again. I'm subclinical at the moment but going steadily up, and I feel a lot worse than my blood tests say I should

No wonder I felt bad, t4 is 99 :eek:

Corruptedmorals

How long after an Eltroxin dose change can you get bloods done? Reduced to 75 from 100 3 weeks ago, have been very up and down but seems settled lately...I know it's a slow acting drug though. I was thinking 4 weeks would be fine.

Wyldwood

inocybe, wow, you must be feeling rubbish. Is your TSH undetectable? I presume you've been put on some form of block medication?

Corruptedmorals, the recommended time between dose changes and testing is 6 weeks as it takes that long for the thyroxine to have full effect. It could take the 6 weeks before you notice any significant difference.

inocybe

Wyldwood wrote: »

inocybe, wow, you must be feeling rubbish. Is your TSH undetectable? I presume you've been put on some form of block medication.

Yes back on Carbimazole, horrible stuff. I'm just glad there's a reason I felt like I was going mad.

cyning

God 99 is high! I know I've said it here before but being overactive is ten times worse than being undractive so I really really hope you feel better soon.

Wyldwood

cyning wrote: »

God 99 is high! I know I've said it here before but being overactive is ten times worse than being undractive so I really really hope you feel better soon.

totally agree

njs030

Does anyone have hypothroidism and low cortisol?
I was diagnosed with hypothyroidism recently after a random conversation with my gp about putting on weight....thank goodness for on the ball gp's!!

She has given me eltroxin and wants to repeat blood tests in 6 weeks, but she said my cortisol is very low and repeated the test yesterday, also ACTH tests.
I googled them a bit but to be honest I find it all very confusing so if anyone could shed some light I'd be delighted!!

RentDayBlues

notjustsweet wrote: »

Does anyone have hypothroidism and low cortisol?
I was diagnosed with hypothyroidism recently after a random conversation with my gp about putting on weight....thank goodness for on the ball gp's!!

She has given me eltroxin and wants to repeat blood tests in 6 weeks, but she said my cortisol is very low and repeated the test yesterday, also ACTH tests.
I googled them a bit but to be honest I find it all very confusing so if anyone could shed some light I'd be delighted!!

I've always wondered about my cortisol levels but never got tested as it's difficult to get sorted, how did your gp do the test?

Corruptedmorals

My cortisol is high apparently, I'm awaiting an Endo appointment so I'll be asking about that. It has to be done at 8am so GP could give blood form for it if they're not open. Mine was requested by and done in St. James.

njs030

RentDayBlues wrote: »

I've always wondered about my cortisol levels but never got tested as it's difficult to get sorted, how did your gp do the test?

She did a series of exploratory blood tests, one was the thyroid and the other for cortisol which she expected would be normal but wasn't!
When she repeated it she did the acth one as that somehow confirms the cortisol. So it seems getting both those blood tests would show if there was a problem.

Voltex

Hi All,

My mother was recently admitted to hospital after neglecting and isolating herself for a number of months. Anyway long story short she was in a pretty bad way with the main symptom being an extraordinarily low Thyroid level..in fact the doctors couldn't detect any thyroid in her bloods. It is such a strange situation the medics are doing a case study on her for a medical journal.

The good news is that she is getting the medical help she needs...but the hard part is the side effects..she is so depressed - often feeling suicidal, asking for her dad back (who died 35 year ago), she doesn't know who I am sometimes and being very cross and angry with the medical staff..its truly heartbreaking!

Anyway my point is that thyroid plays such an important role in general well being that it should never be under estimated.

Lumps Bumps n Blues

I don't know if this will be of any help to you, Voltex, but my mother suffered from hypothyroidism caused by an autoimmune thyroiditis, which actually destroyed her whole thyroid a bit at a time, and now there's virtually no trace of her thyroid on the ultrasounds. Luckily for her her symptoms weren't as severe as those of your mother's, though, possibly because she had been on Eltroxin for years.

I hope your mother recovers very soon, the thyroid is such a b*tch.

Amazingfun

Really sorry for your mam, awful situation. And you are absolutely right, being untreated with hypothyroidism was absolute hell, I only went four years like that, some go double that and even more, destroying their quality of life.
Hope she gets the treatment she needs and recovers soon.

Voltex

Thank you for the kind and encouraging words guys. Between the way she hid the problem and the manner in which we found her, it was pretty distressing.

She is getting the best care possible right now....so hopefully she'll get better quickly. The strange thing with my mothers situation (as explained by the doctors) is that the current thinking is that people with such low thyroid as my mothers would have lapsed into a coma long ago..but given my mothers case this thinking will need to be revisited...so it looks like her case will feed into new knowledge on hypothyroidism.

Corruptedmorals

Still awaiting that Endo referral, I'd bypass it and get my GP to do one but the hospital have so much testing and info that I'll wait.

Got bloods done after lowering Eltroxin to see would the T4 go into mid-range (hovered for years at 22-24) and lower my heart rate. Heart rate unchanged, T4 DID drop nicely to 14 but TSH jumped from 2-3 which it has been for a long time to 9.38 so clearly that was not the solution. At least it explains the awful fatigue. Going to go back to the dose I was on before in the meantime. I'd be interested to see would an Endo consider trying something other than Eltoxin. Unfortunately the lab did not test t3 despite it being on the request form..

njs030

I found out my tsh was 12.9, doc started me on 25mg per day of eltroxin. She explained having to start at a small doses and slowly move up after each 6 weekly blood test but I'm wondering how long it's going to take to get to a level where I feel human and start losing some weight!

RentDayBlues

notjustsweet wrote: »

I found out my tsh was 12.9, doc started me on 25mg per day of eltroxin. She explained having to start at a small doses and slowly move up after each 6 weekly blood test but I'm wondering how long it's going to take to get to a level where I feel human and start losing some weight!

It depends on each individual and even when you feel ok, it can suddenly change again. Always ask for your results, that way I can evaluate how I feel versus the figures. Good luck

inocybe

Are muscle cramps a sign of hypothyroidism?

New Home

They can be, but they can also be a sign of low potassium, and a myriad of other things.

Corruptedmorals

Has anyone ever seen Dr. Healy in St. James? She is the next step in trying to figure out my fast heart rate. I'm curious to know how amenable she is to trying out alternatives to Eltroxin. Hopefully it'll be good, first time to see an Endo as have always just been dealing with my GP.

inocybe

New Home wrote: »

They can be, but they can also be a sign of low potassium, and a myriad of other things.

I think I've been over-medicated on Carbimazole - should call this the thyroid roller coaster, I'd really like to get off now. I've never been hypo before, I'm floored

newwifey

Many thanks to everyone who has contributed to this thread. I was diagnosed in sept last year as hypo. Started on 50ug and currently on 75ug. Got my bloods back yesterday and they are all 'perfect'. However I feel dreadful, worse than before I started the meds. I've read so much here about GP's not listening to patients when they say they are not well. I am planning to see a endo, probably private as I can''t imagine waiting months to see one public. Can anyone recommend an endo in the north west Galway/Sligo area?
Many thanks

Lumps Bumps n Blues

Dr Catherine McHugh in Sligo was brilliant, I saw her a few times as an outpatient and I didn't have to wait all that long to be seen even though I didn't go privately. Hope it helps.

newwifey

Thanks a million Lumps n bumps, thats very reassuring. I may go public so! Thought it would be a wait of months

Lumps Bumps n Blues

Well, that was a good few years ago, I wouldn't know what the waiting times are now. If I remember correctly I got referred by my GP.
A friend also recommended an endocrinologist in Galway Hospital - I understand he normally works in Dublin but he also sees patients in Galway, but I don't remember his name. I'll post it here if I remember it.

RoadhouseBlues

I have posted here before. I'm underactive. Just wondering. Have any of you had trouble with your fingers and toes. I know it sounds daft......but for the last bout 4 months, I have really bad pain in my fingertips and the tips of my toes. Never had this before, but my sister was saying that she is double jointed, and she has problems, and maybe it runs in the family. Very painful though.

RentDayBlues

RoadhouseBlues wrote: »

I have posted here before. I'm underactive. Just wondering. Have any of you had trouble with your fingers and toes. I know it sounds daft......but for the last bout 4 months, I have really bad pain in my fingertips and the tips of my toes. Never had this before, but my sister was saying that she is double jointed, and she has problems, and maybe it runs in the family. Very painful though.

Perhaps a visit to the doctor? If your condition is autoimmune then it tends to be that you might have other autoimmune conditions. I have 2, both of my sisters have 2 as well, but not the same 2!

RoadhouseBlues

RentDayBlues wrote: »

Perhaps a visit to the doctor? If your condition is autoimmune then it tends to be that you might have other autoimmune conditions. I have 2, both of my sisters have 2 as well, but not the same 2!

You are right about a visit to the doctor. Its just that I have suffered with UTI's for the last 3-4 years, so I'm going to the doc every 2 months or thereabouts. And I just know they are sick and tired of looking at me. I'm waiting to get a Cystoscopy (which I am absolutely terrified about). But its at the stage where I will have to go and talk to the doc about the fingers and toes. I'm beginning to think I should just move in to the place. Arghhhh:(

Wyldwood

I understand your reluctance to go to the doc again, I think all of us hypos spend far more time at the surgery than we like but when you're unwell needs must.
The sad thing is that being hypo leaves us open to many other issues. Go to the doc and and don't feel guilty, after all you're the one paying!