Under Active Thyroid

cyning · 01-04-2011 11:28pm

Honestly... I'm not sleeping and have palipitations and a massive appetite: all usual over active thyroid symptoms (i was overactive and had RAI 6 years ago).

BUT I have energy. I had a wedding last week and was out 4 nights in a row: I have NEVER been able to do that. It's just a matter of getting the combination right between the Ti-tre and Eltroxin: the plan is to wean me of the Eltroxin totally becase it wasn't working for me.

I guess it's a mixed bag: the Inderal is a pain in the neck (and I'm only starting that today). I've been on it twice before with the overactive thyroid. But the relief of FINALLY having something that works (even if it was a bit too well!) far outweighs all that! I guess it'll just take a few months to get all the dosages correct: but the difference in 7 weeks was just amazing

edellc · 02-04-2011 8:34pm

Im thrilled for you CYNING hope it keeps going that good
I new to all this just had a baby 7mths ago and went to the doctor as i was wrecked not tired as i tried to explain to ppl but dog tired doctor did some bloods and told me i have an under active thyroid that was nearly two months ago since then she has me on eltoxin only 50 per day and im wrecked still she never told me what my level was like i have been reading here and in older threads
just wanted to know what i should be asking the doctor and what i should be looking for my head is all over the place constantly have a fuzzy feeling and my eyes are heavy all the time too
also a friend said virgin coconut oil can help?? has anyone heard of this and if it does help oh and how do you take it if it does work??
any info greatly appreciated

cyning · 02-04-2011 8:52pm

edellc wrote: »

Im thrilled for you CYNING hope it keeps going that good
I new to all this just had a baby 7mths ago and went to the doctor as i was wrecked not tired as i tried to explain to ppl but dog tired doctor did some bloods and told me i have an under active thyroid that was nearly two months ago since then she has me on eltoxin only 50 per day and im wrecked still she never told me what my level was like i have been reading here and in older threads
just wanted to know what i should be asking the doctor and what i should be looking for my head is all over the place constantly have a fuzzy feeling and my eyes are heavy all the time too
also a friend said virgin coconut oil can help?? has anyone heard of this and if it does help oh and how do you take it if it does work??
any info greatly appreciated

Unless someone has been "sick" they aren't going to understand the tiredness. My fiance found that the most difficult at first: he thought I was totally exaggerating! But as he got to know me he realised that I had no control, and that it was debilitating.

The fuzzy feelingis the brain fog: the way my doc describes it is when I'm underactive my body is on a go slow. Everything just runs a bit slower: including your brain!

The blood test results you want to get from your doctor are your TSH (which should be in between 0.3 - 3.0 (or 0.5-5 some doctors still use) and your T4's (which i think should be between 9 and 18 but someone might correct me on that because I'm genuinely not sure). If your not happy with your GP ask for a referral for an Endocrinologist: my new Endo is just amazing and I cannot stress how important it is to have a good doctor.

For me Cocunut oil just sounds a bit "alternative." I googled it and couldn't find anything concrete on it: keep taking your Eltroxin that's the most important thing.

edellc · 02-04-2011 9:19pm

thanks for that i have more bloods getting done on monday so will ask her then what my levels are
unfortunately i am unemployed and dont think medical card will cover a specialist so will have to make do with my doctor for now

cyning · 02-04-2011 10:11pm

A medical card does cover Endocrinologists: I had one when I was first seeing my first Endo: it's just waiting lists you have to contend with unfortunately :rolleyes:

dollydishmop · 02-04-2011 10:17pm

edellc wrote: »

thanks for that i have more bloods getting done on monday so will ask her then what my levels are
unfortunately i am unemployed and dont think medical card will cover a specialist so will have to make do with my doctor for now

Medical card, or no medical card...if you're referred by your GP you don't pay ...no matter who you are

Cannot get over how many people I come across who don't fully understand how the public system works.

With regards to your bloods, don't forget to ask for copies of your blood results....then learn how to read and understand them.

Splendour · 03-04-2011 12:11am

cyning wrote: »

The blood test results you want to get from your doctor are your TSH (which should be in between 0.3 - 3.0 (or 0.5-5 some doctors still use) and your T4's (which i think should be between 9 and 18 but someone might correct me on that because I'm genuinely not sure).

TSH not really that important, it's the T3 and T4 that matter. T4 should be in top 1/3 of reference range to optimal health and most people feel best if T3 is at the top of range.

cyning · 03-04-2011 12:21am

Splendour wrote: »

TSH not really that important, it's the T3 and T4 that matter. T4 should be in top 13 of reference range to optimal health and most people feel best if T3 is at the top of range.

I wouldn't agree: my T4 levels have been in the low range of normal with a TSH of 37. So if you were going by T4 results I would have been normal: despite the fact I wasn't.

T3 isn't "normally" tested either that I'm aware of?

Splendour · 03-04-2011 12:36am

cyning wrote: »

I wouldn't agree: my T4 levels have been in the low range of normal with a TSH of 37. So if you were going by T4 results I would have been normal: despite the fact I wasn't.

T3 isn't "normally" tested either that I'm aware of?

Sorry cyning, I made a complete bags of that last post. I should have said T4 should be in top 1/3 of range not top 13!!
I had my T3 tested here but doesn't give a reference range which makes no sense! I've also sent bloods off the Genova Diagnostics to have T3 tested-and they give a reference range.

ChewChew · 03-04-2011 9:19am

I'm underactive 6 years now, and genuinely feel like I am getting nowhere. I've constantly had my meds adjusted, I've been to an endocrinologist for a few years and last year my bloods came back within range, so he discharged me., Fair enough, if my bloods are in range but taking eltroxin is not actually helping any of my symptoms!! aarrggghh!! Looks like another trip back to the doc for me soon!!

Splendour · 03-04-2011 10:05am

It's so disheartening ChewChew

Like you, I've been battling this for 6 years, and am at the point now where I can barely function. My thyroid is within range so GP happy but that's no use to me if I can't function!
I know my adrenals are shot and I'm not giving up my quest to find a GP/Endo/Witch Doctor/ANYONE who is willing to properly address them.

cltt97 · 03-04-2011 12:49pm

In my opinion T3 is the most important test. TSH only tells you how much the pituitary tells they thyroid gland to produce thyroid hormones. T4 tells how you much storage hormone you have in your blood but T3 is the active form, so that's the one that tells you the most. And it is also the free forms of the hormones you want, not the total. So make sure your lab referral says FT4 and FT3. James hospital only tests total T3, so I have to go up to Tallaght for Free T3. Also if your T4 gets too high and your body gets swamped with it, then it starts producing a lot of reverse T3 (inactive T3), which blocks the T3 receptors and prevents T3 from getting into the cells. So all in all, one can have "normal" readings, but that doesn't mean everything is working well...
There are many reasons why thyroid meds might not work properly, and it's a long hard battle and there are many things one can try:
Make sure your ferritin and B12 are in normal range (upper end)
Consider selenium supplements (there is lots of scientific research that shows that it can lower the antibody count), you also need it for conversion from T4 to T3.
Try natural desiccated thyroid (such as armour or erfa) - not many doctors prescribe it though. This contains T4, T3, T2 and T1 so gives you more of what your own gland is supposed to produce.
Get serum cortisol tested (in the morning) and see where it is at and consider getting an adrenal saliva test to check if your adrenals need support.

I've read lots of books and if there is one that I would recommend because I feel it addresses most of the important points in the best way is the book by Dr Peatfield

tringle · 12-07-2011 4:45pm

Hi all great information here. Im waiting to get second blood test for low thyroid and I want to ask a question

...and please don't shoot me this is the easiest way to ask it

Do fat people get low thyroid problems
OR
Do people with low thyroid problems get fat

The doc seems to think I have "anxiety" but tested for a number of things and thyroid was low, so am going back for second test.
I am overweight and have been trying hard to lose it, during the week I eat sensibly, am careful about any fats and have few white carbs and no alcohol...and lose about a kilo. I give exercise a rest at weekend, eat some potatoes or rice, have 4 glasses of wine in total and about 4 squares of chocolate and put back on all I have lost.

Have looked up symtoms for low thyroid and one or two are opposite of me...I am always too hot, never cold. And have heart palpitations which is a side effect I could get on low thyroid meds.

Anyway, will see what doc says when tested again, Its nice to know its not just me and symptoms are not in my head

jimmydec · 12-07-2011 9:14pm

best info site totally accurate and reliable and sensible!!!--www.patient.co.uk

NHS site from uk- .hypothroid incredibly common, and is generally in vast majority of people not complicated, though initially very slow to come right-- hyperthyroid is another issue altogether, can be very tricky to get right-- also the" typical" textbook symptoms are rarely seen except in the very hypo or hyper states

dollydishmop · 15-07-2011 10:08am

tringle wrote: »

Have looked up symtoms for low thyroid and one or two are opposite of me...I am always too hot, never cold. And have heart palpitations which is a side effect I could get on low thyroid meds.

Anyway, will see what doc says when tested again, Its nice to know its not just me and symptoms are not in my head

If I learnt anything in my thyroid journey, its that the symptoms don't always sit nicely in the two seperate lists...and many can cross over.

I was Graves/hyper, and yet my GP, Endo & Dietician all scratched their heads over why I couldn't get the weight off for my thyroidectomy operation...I'm sure they all thought I was cheating on my diet/exercise plan, although none of them said as much.
One particular week in my pre-op diet sticks in my mind.....despite being on Xenical, eating like a half-starved angel (you *can't*cheat on Xenical! It makes life VERY unpleasant if you do), exercising a minimum of 40 mins a day, 7 days a week (cycling, swimming, jogging, walking, aerobics etc) I *gained* 14lbs in ONE WEEK - How is that even possible???!!!
Then my Endo finally conceded that I was what he called a "4%-er"....that is to say, that in approx 4% of hyper patients, instead of weight-loss as a symptom, they experience weight-gain instead. When he accepted that, and explained it all to me, that actually helped my own head immensely, because I was slowly losing the will to live, it seemed the harder I worked to lose the weight for my surgery, the more it piled on.

Funnily enough, now I have no thyroid gland at all, and am technically Graves/hypo, the weight is coming off a lot easier....

However, all this is academic for you, until you get your second lot of blood results back...I just wanted to demonstrate that the symptoms aren't always black & white...hopefully you'll get some answers soon x

tringle · 21-07-2011 3:03pm

Wow, thats really tough. But thanks for the answer, its totally confusing isnt it!!!

naasface · 29-07-2011 6:22pm

Hey guys, I hope it's okay that I post here!

I am on roaccutane (just started my third month) and I get bloods done for it every month.
This month I got my bloods back with my TSH at 4.89. The dermatologist said this is nothing to do with the acne meds but its a sign of hypothyroidism. So I am going to my doctor on Tuesday. My weight is 5 ft 7 54kg. Very irregular periods i.e sometimes 4 mths without one. Most recent 2 mths late. Bad appetite, Always tired but thought it was just from my lifestyle.

My question is: Is hypothyroidism a gradual thing (could I have had this for a long time) or did you guys find out like I did from a blood test. I don't know it seems very random!

cltt97 · 30-07-2011 1:32pm

Hi Naasface,

It is a gradual thing really and symptoms usually get worse as time goes on. I went to the doctor because I thought I was anaemic or something, just so tired and lifeless and no energy - he suggested thyroid, and voila, that's what it was. the spectrum of symptoms is very wide and varies from person to person, irregular periods being amongst them (my endo always asks me about that). The thing is it more or less creeps up on you and it's only when you start feeling really rotten that you start thinking there is something wrong with me. Is there any history of any type of auto-immune disease in your family (i.e. coeliac, hypo/hyper thyroidism, diabetes type I, rheumatoid arthritis, MS, etc)?

Corruptedmorals · 01-08-2011 6:50pm

I was under the impression that once your results are normal on whatever dosage you're on, they would stay that way? Have been on 50mg eltroxin for over 2 years and 25's before that for a year. My result (I don't know is this is TSH or free t4? But doc says normal is 0-1 and my first ever result was 10) went from 10 to 7 to 4 to 'normal'- not specified number. Now though, it is 10 again and I had very bad symptoms with wekaness, tiredness and energy levels. (Weight not an issue, I am actually underweight). So can thyroid function actually decrease lower and then need more meds? I thought it would be a static thing. Dose now increased to 75 every day for last 4 weeks, will need to go to 100 I'd say. I had accepted that it was stable and now I feel anything could happen with it.

Wyldwood · 02-08-2011 10:21am

Definitely not a static thing & never to be treated lightly.
I had a subtotal thyroidectomy many years ago and went hypo a few years later. Was on Eltroxin 100 & apparently stable for many years at TSH 2 - 2.6 until, for no reason, I went very hyper TSH 0.11 (lab range 0.4-3.8). I am having serious difficulty getting back up to "normal" where I feel well & continually having meds reduced. 6 months later & on Eltroxin 75/50 on alternate days I'm still not right TSH 0.24 now.
Moral of story is make sure you have regular bloods done, at least annually, if you have a thyroid condition.

cltt97 · 02-08-2011 8:39pm

Corruptedmorals - if you have autoimmune thyroiditis, i.e. antibodies destroying your gland, your demand will keep increasing as your gland slowly dies and can't contribute to the body's demands any longer, so it's quite normal. Hence the need for regular check-ups. And Wyldwood, if I was you I'd reduce it right down, or even temporarily stop, it's easier to build up again then to come down. I had to come off Eltroxin altogether for a good while and slowly build it up again.

Corruptedmorals · 02-08-2011 10:14pm

cltt97 wrote: »

Corruptedmorals - if you have autoimmune thyroiditis, i.e. antibodies destroying your gland, your demand will keep increasing as your gland slowly dies and can't contribute to the body's demands any longer, so it's quite normal. Hence the need for regular check-ups. And Wyldwood, if I was you I'd reduce it right down, or even temporarily stop, it's easier to build up again then to come down. I had to come off Eltroxin altogether for a good while and slowly build it up again.

Thanks for that, once I know I don't mind going every 3 months or so for a check, will be going in a few weeks. Was hard to take it fully seriously at the start when I was on such a low dose and quite underweight but will definitely monitor it more closely now.

cltt97 · 03-08-2011 6:13pm

When you're adjusting your dose, it usually goes in 6 weeks intervals, it takes that long for a dose to level off to a steady state, but once you've reached the level that feels good for you then usually it's every 6 months to a year that you should keep checking it.

El.duderino · 24-08-2011 11:48am

Wyldwood wrote: »

Definitely not a static thing & never to be treated lightly.
I had a subtotal thyroidectomy many years ago and went hypo a few years later. Was on Eltroxin 100 & apparently stable for many years at TSH 2 - 2.6 until, for no reason, I went very hyper TSH 0.11 (lab range 0.4-3.8). I am having serious difficulty getting back up to "normal" where I feel well & continually having meds reduced. 6 months later & on Eltroxin 75/50 on alternate days I'm still not right TSH 0.24 now.
Moral of story is make sure you have regular bloods done, at least annually, if you have a thyroid condition.

Similar situation. Partial thyroid removed after nodule found. 10 years later found be hypo. Doses from 50 to 175. Stable for years at 150. Suddenly went hyper. With bad chest pain and palpitations. Reduce to 125.

I found this thread this morning as it happening again. I,m quite active and on 125 m-f and 150 s-s. Losing weight, The chest pain is back. New to the party Stomach is upset. I am going to reduce dose to 125. I hope in a week or 2 these side effects go away.

IMO(I may be wrong)I think there is relationship between your daily activity and dose. Change in lifestyle can effect how thyroxine works. First time I went hyper. It was after a period of inactivity with knee injury. I have just recovered from neck injury. And now I feel ill again. Coincidence? Or I need stop the extreme sports?:D

Wyldwood · 24-08-2011 5:17pm

El.duderino, I'm sorry to hear you're not feeling well. I can completely understand how you're feeling. I had bad palpitations, internal tremors & lost weight also. Nearly blacked out a couple of times when it was at it's worst. I'm now on Eltroxin 75/50 alternate days & beginning to feel reasonably well again. I'm due more blood tests next week.
I'm not altogether sure that going hyper is totally related to exercise though. I'm fairly active, walk about an hour most days, & I went hyper regardless.
I presume you're getting bloods done to measure TSH & Free T4? I wouldn't self medicate a condition like hyperthroid.

LegacyUser · 03-12-2011 2:36pm

I was diagnosed with an under active thyroid in April 11, I started on 50 mg of eltroxin which helped for the first few months, however in the last couple months i have been upped to 100mg and I am only 21! I suffer from most of the symptoms of having it including hair loss but I have to get over it and get on with my life. I have to get bloods done every 2-3 months, in order to see if my dosage is correct. It maybe a long term illness, but by taking the right dosage prescribed by your doctor your life shouldn't be affected!

27-01-2012 11:20pm

I found out today that I have an under active thyroid
Not sure how I feel about being on meds for life and kind of glad there's a reason for my fatigue The doctor said to think about it and come back next month for another round of tests before I go on meds

conspiracyinc · 31-01-2012 12:27am

Hi All,

Just wondering if anyone has a similar situation to me... I've an underactive thyroid and take eltroxin, at my last blood test my TSH was 2.2. Basically I wonder if my menstrual cycle has any effect on my thyoid. I seem to go through a cycle with thyroid symptoms every month - I feel a bit tired, am constipated, and a bit down for two weeks, then I feel great for a week, normal movements etc, then a little hyper for a week or so with night sweats and loose bowel movements, then back to feeling a bit hypo and so on. I've been tracking this for a few months and this seems to be the pattern. I can cope ok with the symptoms - its so much better than when I was badly hypo, but I'm curious if anyone else experiences similar?

cltt97 · 31-01-2012 11:28am

Hiya, well I never experienced the hyper bit, but I definitely feel worse before and during my period, more tired, less energy, very similar to you, so definitely an association.

goodgodholmes · 28-02-2012 12:12am

Hey guys, quick question -

I suffer from congenital hypothyroidism (the kind you're born with, no thyroid function at all). At 22 years of age, my current dose is 125 mg/day. When I was a kid I used to have my bloods tested every 3-6 months, whereas now it's every 2 years.

I've only ever taken Eltroxin, however I have pretty much been unable to control my weight my whole life. I have a relatively normal diet and am moderately active - however, no matter what, my BMI consistently remains around the 29 mark. I have been very active in the past and been very conscious of my diet and calorie intake, but my weight always remains around the same. The only time I ever lost a significant amount of weight was when, sick of being overweight, I went on a relatively extreme diet - walking miles a day and trying to eat under 1000 calories a day for about a year. Even still, despite the fact I was barely eating and exercising a lot over a pretty long period of time, the lowest my BMI ever hit was 24.5. As I'm sure you can imagine, the weight crept back on relatively quickly.

Throughout my whole life, no doctor has ever mentioned T3 or any other hypothyroidism treatments. I only have my bi-annual blood tests and am consistently recommended my 125mcg Eltroxin dose.

In my memory, I have never been to an endocrinologist (probably when I was a baby, and I often visited Temple Street as an outpatient as a child so it may have been an endocrinologist then), but it's been my GP since I was about 14 and never anything other than Eltroxin.

Do you think it's worth going to see the endocrinologist? I'm worried the doctors are going to fob me off as I've never really complained about Eltroxin before, as it's all I've ever known. I never knew there were alternatives as Eltroxin has just been a part of my life since the day I was born, and I never questioned it.

From the perspective of you guys who developed hypothyroidism later in life (and thus, probably had the good sense to read up on your options as opposed to just accept what the doctors told you as the only option for 22 years!), do you think I might need a combination of T3 and T4?

Did any of you find it difficult to get referred to an endocrinologist on the basis that hypothyroidism isn't that "serious"? Did you ever find you got fobbed off because Eltroxin is what everyone is prescribed?

I'm only really starting to find out about other options now so any thoughts would be greatly appreciated

Under Active Thyroid

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