Thyroid UK
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Nearly 4 years post TT and still feeling rubbish

Hi everyone this is my first ever post on any forum ever so please be gentle 😬 feeling emotionally exhausted with everything now and wondered if any one else has the same experience . Being treated in the south east and NO MATTER how high or how low my dose of Levo is I never feel better .. have not felt ‘normal’ in almost 5 years due to cancer and subsequent TT .. but the docs just don’t listen it’s all about blood levels and nothing else why does no one listen to symptoms! I’m a train driver and am probably about to lose my career cos I am just not sharp enough to be in charge of one and I’ve tried everything . My one problem that I cannot solve is taking meds an hr before food as I cannot swallow tablets with water I have to hide them in the tiniest amount of food . Do you think this is my problem and I would possibly feel significantly better ? I have told endo this and asked for T3 instead as this is ok with food but with no luck ( costs too much ) . If I carry on like this my husband will leave me ( I feel so bad for him because I’m constantly feeling tired , with aching muscles and bones and I can’t enjoy a good walk with the dog .. I just don’t know how to sort this .. I’d be exasperated with it all but even that’s too much energy .. trying to keep my sense of humour but it’s leaving me quickly now ... any thoughts guys ... apologies for long post .

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Hi there. It sounds so hard. I am sure much more knowledgeable people will come and give you much better advice than I can....but I think that you can get prescription Levothyroxine in liquid form....might help in a small way.

Good luck

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Thanks Exetergirl 👍🏻

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Welcome to our forum and please don't worry about posting how you 'feel'. The majority on this forum are here because they were failed by the professionals.

Just as you have.

I have my thyroid gland but for people without I really believe that a combination of T4/T3 (levothyroxine/liothyronine) is best.

They never test our Free T4 and Free T3 which would dictate whether or not we need increases. The TSH doesn't always do so and, even worse, the professionals make a huge mistake in believing that if the TSH is somewhere in the range, we're on sufficient. Not so!

Regarding your not being able to swallow tablets, I believe there is a liquid thyroxine which might be more beneficial for you.

Taking tablets with food will not give your body the hormones you need. Thyroid hormones are the life-giving hormones required in our million of Receptor Cells. You can split the pills into quarters which would make it easier to swallow with water.

No thyroid hormones must be taken with food - even T3. An hour must be left between the dose and food. T3 is the only Active Thyroid Hormone. T4 is inactive and has to convert to T3 so we must be on an optimum dose to convert to T3 and enable us to feel better and relieve ALL symptoms.

You can source your own T3 and many members buy their own and it is not an offence to buy medication which is for our own use.

What you need is a Full Thyroid Function Test and tell your GP you've taken advice from the NHS Choices for information/advice on dysfunctions of the thyroid gland, Thyroiduk.org.uk.

All blood tests for thyroid hormones has to be the very earliest, fasting (you can drink water) and allow a gap of 24 hours between the last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as that's all the professionals seem to take notice of. THS is from the pituitary gland not the thyroid gland.

Request: TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. He or lab may not do all of them, the ones not tested and we have two private labs which will do the ones GP wont, or do all of them. They are home pin-prick tests so make sure you are well hydrated a couple of days before the blood draw.

Your GP should definitely test B12, Vit D, iron, ferritin and folate. All blood tests have to be at the earliest appointment.

Always get a print-out of your results of your tests and make sure the ranges are stated - these figures are in brackets after the results.

Post when you get them for members to respond.

All vits/minerals have to be optimum in order that thyroid hormones can work properly.

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Thanks shaws I have had all those tests in the past and been on combination of T4 &T3 but never felt any better I have told my endo the problem I have swallowing tablets ( even cut into smaller pieces) and not once have the mentioned a liquid version. For years I have tried to avoid googling things as I think this can make you paranoid and over think but I think you’re right maybe my entire problem is absorption because I’m not taking meds completely free of food . Have an endo appt tomorrow so will def ask aboit liquid Levo .. thanks for advice .

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Sorry for typos only just put my glasses on 🙈

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Also just to add to that , I have NEVER been told to have fasting blood test first thing .i really feel let down by my endo over the years I have asked questions but always just taken their word and not gone off and googled stuff I’m not one to make a big deal of stuff . Maybe I should have done more of my own research. They are not concerned how I feel if my levels appear ok .. they check my TSH levels tell me they’re ok and send me on my way with a fob off if I question anything .. too late for tomorrow’s appt but in future I will fast before my blood test. 👍🏻

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Welcome to the forum!

Am so sorry to hear you are having such a tough time.

Am afraid whether its Levothyroxine or T3 the meds need to be taken on an empty tummy. Not with food. Thats really important. Have you tried crushing them? Have you told your doctor about your issue with tablets? You used to be able to get it in a liquid form. However I believe its not as stable in liquid or am I talking rubbish? .....someone else will know!!

Do you know your blood test results? If not can you ask for a copy. It is your right. Then post them on here with the reference (numbers in brackets next to result).

There are lots of clever knowledgable people on here whocan offer really good advice. Hang in there....

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Thanks so much waveylines I will try and get a copy of bloods tomorrow and post 👍🏻

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Suggest you crush tablet and drink it

Both Levo and T3 must be taken on empty stomach and nothing apart from water for at least an hour after

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Hi slowdragon ive had so much conflicting advice on this I don’t know whose right or wrong a pharmacist told me not to, but if I’m feeling pants constantly what have I got to lose by trying 👍🏻 Thanks

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You need to swallow it, not let it dissolve in mouth.

But it's got to be better than taking with food

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take on waking, but it may be more convenient and possibly more effective taken at bedtime. Lots of us find it better. Some try it and don't get on with it

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Essential to test vitamin D, folate, ferritin and B12 too. Ask endo to do so

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Thanks slowDragon . Will get test for above .. swallowing is the problem .. without food I just retch and bring them back up . Which is ridiculous I know and all in my head .. I’ve tried hypnotherapy to cure it .

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Kazcompo.

Can you crush the tablet and mix it with water and swallow that?

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I’m going to try that and see if that helps . 👍🏻

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Kazcompo,

It should improve absorption which may be as good as having a dose increase if you are undermedicated but equally could make you overmedicated if you are optimally dosed.

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

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I was on different combinations of T4 and T3. I did not feel any better until the T4 part was dropped to 75mcg or less and T3 was raised to over 25mcg. I had previously been on 150 mcg levo. 10mcg added to my 100mcg levo just did not cut it for me.

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Hi Kell E my blood levels are all in the correct parameters so the endo won’t change dosage I’m trying to work out what might be causing all my symptoms if I’m so called correctly balanced . I’ve had my bloods tested for any vitamin deficiency so maybe that might show something .. and I’m going to start magnesium.. thanks for your advice

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