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Thyroid issues


Jerry

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So I have been diagnosed by doctor with low thyroid. Levels of TSH have been tracked going up (all out of range) for two years now and the latest increase was quite big, along with T4 being right on the lowest number in range. So she has prescribed me Thyroxine (or whatever the proper name is).

The only "symptom" I can describe is fatigue - but that could be from my lifestyle.


Any experiences on this medication?

One thing that is annoying me is having to take it on an empty stomach then waiting to eat!! My stomach is rarely empty.

Also the refrigeration thing is annoying too.


Hopefully the medication will make me feel less tired? And help when I am trying to lose weight?

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Silverstreak

I've been on thyroxine medication for the last eight years. My experience is:


I started feeling less tired within about a month or so? Had to wait for my levels to get back up to normal.


A tip I was given was to keep a sheet's worth or so of meds in my bag and the rest in the fridge, so that I don't have to keep going back and forth (or forgetting what to take.) So I keep a sheet's worth in the zip up pocket of my handbag and take it first thing as soon as I wake up and go downstairs.


When you're getting used to taking the meds, write in the diary or calendar when you've taken it for the day.


I try to do the waiting to eat as much as possible, but sometimes I can't (eg on work days I get up at five, leave house at six, so I can't wait two hours to eat). Just do your best and talk to your GP if you are worried.


Now that I'm on thyroxine, I get a yearly blood test just to check my levels, so you might want to schedule that as a recurring yearly reminder in your calendar.


Thyroxine has made it easier to lose or maintain my weight, as I am less exhausted. It hasn't fixed everything though, I still struggle with weight gain due to comfort eating and other medication. But my quality of life has definitely improved and I have more energy, plus I am a lot less teary. I was diagnosed five months post partum, apparently it's quite common for pregnancy to throw women's levels out of whack.


Hope this helps and all the best xo

Edited by Silverstreak
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Silverstreak

Forgot to add, it took a while to get the perfect dose for me, so I ended up seeing an endocrinologist for a while. If your meds require tweaking or you don't notice much change, I think it's good to be checked out by an endocrinologist at least once. It got to the point where after a few years they were happy for me to just have a GP look at my yearly blood tests.

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I keep them in the fridge and take when I make breakfast. Calcium especially can inhibit absorption but my levels are fine on the dose I'm on taking them at breakfast, so I don't want to start taking them 'properly' and end up getting too much.


Pregnancy can send levels all over the place, but that's probably not as much of a concern for you these days. I've never had an endo manage my levels, although my ob consulted with one while I was pregnant until she got the changed dose right.


It's honestly all such a non event for me, the most boring, least side effects of my medication!


I once left them behind when traveling for two months and three weeks in was feeling much more tired.

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As per pp, the least concern of my medications. Like [mention]DirtyStreetPie[/mention] , do as I say, and not as I do. My levels are perfect, so I guess there’s a chance that I could manage with a lower dose if I took it on an empty stomach. I don’t take extra calcium so don’t worry otherwise.


I do cut the strips to have some out with the other medications I take every day. Am currently away from home for 3.5 weeks and have been a bit careless with putting it in the fridge.


My neighbour takes many times my dose - her thyroid is basically not functioning at all, and if she misses her am dose she will know by mid afternoon.


The main thing I found was that I slept better (that happened pretty quickly) so of course I felt better during the day.

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@Silverstreak Haha! They used to come in a tiny white plastic bottle. Not refrigerated! And they hardly took up any space. Those were the days...

 

These threads were the first I have heard of empty stomach and refrigeration. Mine still does come in the tiny white bottle containing 200 pills so maybe it's a dose or brand thing?

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ClaudiaCosette

I have been on Thyroxine for about 5 years. I originally went on it when I was trying to get pregnant (I had been borderline during my previous pregnancy). It was a pain having to take it before eating, but I quickly got used to it. I use the time to go out for a walk. It's the first thing I think of every morning, get up, go the kitchen, take my medicine, go for a walk.


When I first started taking it, I had no real symptoms. I was often tired, but nothing that a good nights' sleep wouldn't fix. However, after I gave birth, my GP declared "your levels are good now, you can stop taking it." HUGE mistake! I started crashing very badly. I had overwhelming exhaustion, no matter how much I slept. It felt like I was walking around with a ton of bricks on my head. I had achy arms and legs; like I had the flu, but without the fever. I had terrible brain fog and basically could hardly function.


And I didn't connect the dots and realise that it was my thyroid. I went to the GP and complained and she said, oh, you're a busy mum, you just need to rest more. At some stage she went on leave and another GP took over. He urgently called me in and said my blood test results showed I needed to go back on the Thyroxine immediately. So I did. That was 2.5 years ago and it's only recently I've been feeling a bit more back to normal. Most days I'm okay but some days I still feel awful.


So moral of the story: don't stop taking it!

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I have been on Thyroxine for 21 years as I had Thyrotoxicosis and had a complete thyroidectomy. I felt like death before hand and feel perfectly normal ( in thyroid terms ) now despite not producing any of my own hormone. My 6 monthly TFT'S have been normal for years.

I have my medication with my breakfast and have done so for the entire time. I know the advice is to have it on an empty stomach but my anecdotal evidence tells that it makes not one scrap of difference.

The box is kept in the fridge but the blister slip is kept in my 'pill tin', the slip you are using does not have to be refrigerated, it can be left out of the fridge for 21 days as long as it is not too hot where it is stored.

There are absolutely no side effects for me other than when I actually forgot to put them into my pill organiser for 2 weeks and wondered why I was starting to feel just slightly sluggish. I am on 200 mcg alternating days with 150mcg.

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tinselfoil hat

I have been on Thyroxine for about 5 years. I originally went on it when I was trying to get pregnant (I had been borderline during my previous pregnancy). It was a pain having to take it before eating, but I quickly got used to it. I use the time to go out for a walk. It's the first thing I think of every morning, get up, go the kitchen, take my medicine, go for a walk.


When I first started taking it, I had no real symptoms. I was often tired, but nothing that a good nights' sleep wouldn't fix. However, after I gave birth, my GP declared "your levels are good now, you can stop taking it." HUGE mistake! I started crashing very badly. I had overwhelming exhaustion, no matter how much I slept. It felt like I was walking around with a ton of bricks on my head. I had achy arms and legs; like I had the flu, but without the fever. I had terrible brain fog and basically could hardly function.


And I didn't connect the dots and realise that it was my thyroid. I went to the GP and complained and she said, oh, you're a busy mum, you just need to rest more. At some stage she went on leave and another GP took over. He urgently called me in and said my blood test results showed I needed to go back on the Thyroxine immediately. So I did. That was 2.5 years ago and it's only recently I've been feeling a bit more back to normal. Most days I'm okay but some days I still feel awful.


So moral of the story: don't stop taking it!

 

DH is one of the unusual men to have Hashimoto’s and needs to take thyroxine as a result. He was taking thyroxine (T4 replacement) and still feeling awful. The GP prescribed a T3 replacement too as some people don’t metabolise the T4 replacement in a typical manner (don’t quote me on that, all I know is it didn’t make him feel better). He feels good on the t3 + T4 combo. Blood tests can’t measure the t3 so it’s all about how it makes him feel. The T4 can look great in a blood test but he can still feel awful.


I try to tell as many people with thyroid problems this as I can, as many GP’s don’t know about it. Maybe it would help you [mention]TinCat[/mention]?

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SillySausage

I'm the same as most here, take one blister pack from the larger refrigerated box and leave it in the bathroom. I actually take mine at night before bed - My endo advised me to do this when first pregnant in case I had morning sickness and could throw up the tablets. Luckily didn't have morning sickness, but 5 years later I still take my tablet when I brush my teeth before bed.

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I've been on thyroxine for about 10 years now and get my levels checked every couple of years by the GP. I take mine as soon as I get up and wait half an hour to eat. Some days it is less and some more but it seems to work fine for me. I think that as long as you are consistent in what you do they can match your medication level to what you need. I have one friend who takes hers before bed and she doesn't eat for the two hours before hand but I find it easier if it is the first thing that I do in the morning.

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Not So Retro

Mine was super overactive after I had my first boy. The scale measuring hormone levels stopped at 128, mine couldn't be accurately measured, fun times. I had the radioactive iodine treatment and have been on Thyroxine ever since. I take 150 mg on Monday, Wednesday and Friday and 100mg every other day. I take it when I get up, probably 10 minutes before I eat and do keep it in the fridge.

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I've been taking thyroxine for 25 years. Over time there been a lot of warning stickers added to the box - refrigerate, don't freeze, take on an empty stomach, don't take with dairy products, antacids, iron or calcium. If you take a supplement like Ostelin, it's best to move that to evenings.


Like DIrtyStreetPie, I leave a strip out of the fridge and then refrigerate the rest of the box.


I take it first thing in the morning before exercising. You could put a strip by your bedside table and a bottle of water and take it as soon as you wake up? Perhaps shower, dress and so on and the 30 minutes will pass quickly?


Hang in there. It takes a while for the thyroxine to work, but it does work a treat. I do hope you feel better soon as I remember the tiredness vividly and have never experienced anything like it since.


As your thyroid is low functioning, I hope you have also received dietary advice as there are foods to avoid lowering the function further.

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Thanks all.

A relief that I don't need to stress too much about refrigeration if I go away for a weekend etc. Makes taking it on empty stomach a bit easier too, though I won't stress if I take it then eat a little bit afterwards.


Will be interesting to see if doctor does more investigation to see why my thyroid is out of whack (though it could be middle aged woman syndrome). Two of my friends at work have had partial thyroidectomies due to lumps on thyroid (one was cancerous). My thyroid has no obvious lump etc.


It may be my imagination but I already feel a bit less tired. :) (after only four days)

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I’m in this boat too - waiting to see the endocrinologist.

My thyroglobulin AB levels came in so bloody high, and the GP has told me to prepare for graves, hashimotos or cancer 😱


Can anyone calm me?

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I’m in this boat too - waiting to see the endocrinologist.

My thyroglobulin AB levels came in so bloody high, and the GP has told me to prepare for graves, hashimotos or cancer 😱


Can anyone calm me?

No cancer is good to have, but thyroid cancer is one of the more treatable and less likely to spread from my reading. I know two colleagues who have had it. One required some radioactive treatment to thyroid, but the other just had thyroid removal and all fine. :)


Hope all goes well, no matter what the issue is.

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I’m in this boat too - waiting to see the endocrinologist.

My thyroglobulin AB levels came in so bloody high, and the GP has told me to prepare for graves, hashimotos or cancer 😱


Can anyone calm me?

 

I had Graves disease and after my thyroidectomy the tissue showed some Hashimoto's disease too. I was also prepared for the cancer possibility.

It was not cancer and if it helps I know at least 6 people in my family and friends over the years who have been diagnosed with Thyroid cancer who are all still fighting fit, albeit without their gland.

Good luck.

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I leave a blister sheet next to my bed and take it when I wak up. Sometimes that is 6am, sometimes 7am, I usually jus chew my tablet. I have a cup of tea around 7.15 so not long after my tablet.


Have been taking thyroxine for aroun 13 years now. The first couple of years were a PIA as we were playing around with the doses.


I do have a lump that is growing but as my levels are ok the Doctor doesnt see the need to do anything. About five years ago it was 11mm and was tested (u/sound guided needle) and not cancerous. I recent ultrasound has it at 15mm. The side on my nec is a little sore and swollen but GP and second opinion DR said it was nothing to go on as my levels are ok.

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DaLittleEd

I have Hashimoto's. My father had thyroid cancer. They were so confident that they got all of the cancer when they removed my dad's thyroid that he didn't even need to have any radiation treatment after, just close monitoring and 6-12 monthly blood tests.

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  • 2 weeks later...


DH is one of the unusual men to have Hashimoto’s and needs to take thyroxine as a result. He was taking thyroxine (T4 replacement) and still feeling awful. The GP prescribed a T3 replacement too as some people don’t metabolise the T4 replacement in a typical manner (don’t quote me on that, all I know is it didn’t make him feel better). He feels good on the t3 + T4 combo. Blood tests can’t measure the t3 so it’s all about how it makes him feel. The T4 can look great in a blood test but he can still feel awful.


I try to tell as many people with thyroid problems this as I can, as many GP’s don’t know about it. Maybe it would help you @TinCat?

 

Free T3 and/or total T3 can be measured by large pathology laboratories but it’s rarely required except in cases like your DH, so to prevent over ordering, it’s not included when ‘thyroid function tests’ is requested and not Medicare rebatable unless requested by an endocrine specialist (ie. if it’s a GP request, the patient is out of pocket for the whole cost of the test).

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Chillipeppers


DH is one of the unusual men to have Hashimoto’s and needs to take thyroxine as a result. He was taking thyroxine (T4 replacement) and still feeling awful. The GP prescribed a T3 replacement too as some people don’t metabolise the T4 replacement in a typical manner (don’t quote me on that, all I know is it didn’t make him feel better). He feels good on the t3 + T4 combo. Blood tests can’t measure the t3 so it’s all about how it makes him feel. The T4 can look great in a blood test but he can still feel awful.


I try to tell as many people with thyroid problems this as I can, as many GP’s don’t know about it. Maybe it would help you @TinCat?

 

Free T3 and/or total T3 can be measured by large pathology laboratories but it’s rarely required except in cases like your DH, so to prevent over ordering, it’s not included when ‘thyroid function tests’ is requested and not Medicare rebatable unless requested by an endocrine specialist (ie. if it’s a GP request, the patient is out of pocket for the whole cost of the test).

This hasn’t been the case for me. The gp frequently checks free t3 and I’m never out of pocket?

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DH is one of the unusual men to have Hashimoto’s and needs to take thyroxine as a result. He was taking thyroxine (T4 replacement) and still feeling awful. The GP prescribed a T3 replacement too as some people don’t metabolise the T4 replacement in a typical manner (don’t quote me on that, all I know is it didn’t make him feel better). He feels good on the t3 + T4 combo. Blood tests can’t measure the t3 so it’s all about how it makes him feel. The T4 can look great in a blood test but he can still feel awful.


I try to tell as many people with thyroid problems this as I can, as many GP’s don’t know about it. Maybe it would help you @TinCat?

 

Free T3 and/or total T3 can be measured by large pathology laboratories but it’s rarely required except in cases like your DH, so to prevent over ordering, it’s not included when ‘thyroid function tests’ is requested and not Medicare rebatable unless requested by an endocrine specialist (ie. if it’s a GP request, the patient is out of pocket for the whole cost of the test).

This hasn’t been the case for me. The gp frequently checks free t3 and I’m never out of pocket?


Sorry, that must just apply to the investigative phase.

In the monitoring phase of a diagnosed condition, GP requests must be rebatable otherwise would need to see specialists too often,

Apologies for the half thought earlier post which was primarily to inform that fT3 & tT3 are available.


ETA: I looked up Medicare - Any doctor can order T3 but it’s only rebatable if the patient has specific symptoms or a raised TSH already. I don’t know if this has changed from several years ago or if I’ve confused T3 with another test which is only rebatable if requested by a specialists (there are many tests with rules restricting ordering and there are changes all the time).


PS: Not a GP so no one has missed out due to my not knowing T3 is rebatable if requested by a GP.

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