Levothyroxine against NDT: Hi I was finally put... - Thyroid UK

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Levothyroxine against NDT

Longinthetooth profile image
13 Replies

Hi

I was finally put onto 25mcg Eltroxin in December 2017 & started to feel wonderful, all symptons gone. Unfortunately, about 5 weeks ago my hot sweats returned day & night & now headaches, fuller stomach & breasts & some tiredness, so symptons are returning.

Obviously, I need to increase my dosage but I am wondering if I should try NDT but my GP had never heard of it or should I ask for Levo with T3 added. When I mentioned T3 in the first place to my Endo he just looked at me.

I've read so much positive stuff for NDT & would have to buy it online from a reputable company.

Does anyone buy it & if so are you able to let me know the details .

Any advice much appreciated.

Longinthetooth

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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

Longinthetooth

NDT doesn't suit everyone. I tried it 20 years ago under the guidance of two esteemed private doctors here in the UK, on it's own, in combination with T3, but it did nothing for me over a period of 2 years.

However, as you have been on 25mcg since December 2017, why are you still on a tiny starter dose - one that is usually reserved for children, the elderly and those with heart problems? You could have been started on 50mcg and you should have been retested 6 weeks after starting Levo, had an increase of 25mcg, retested after another 6 weeks, another increase, and repeated until your levels were where they needed to be for you to feel well.

What are your levels now? You need the following tested

TSH

FT4

FT3

Thyroid antibodies

If you've got recent test results, please post them on the forum, with their reference ranges, for comment.

It would also help to have vitamins and minerals tested as they play an important role in helping thyroid hormone to work, so ideally we need to see

Vit D

B12

Folate

Ferritin

Longinthetooth profile image
Longinthetooth in reply to SeasideSusie

Thanks for this.

I know it's a low dose, I'm 65 so that's probably why. After starting it I felt fabulous for the first time in 5 years but slowly the symptoms are returning so I've made an appt to see the GP. By what you are saying she should increase my dosage. The Endo said he would see me in about 4 months which should be any time now so I've only got my blood results from before taking Thyroxine.

SeasideSusie profile image
SeasideSusieRemembering in reply to Longinthetooth

Your age probably is the reason for the low starting dose but GP should have tested 6 weeks after starting - that is not age specific. Retesting is way overdue so make sure you ask your GP to do the tests. Get as many as you can of those I listed above.

When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

Longinthetooth profile image
Longinthetooth in reply to SeasideSusie

So is it best to eat after the testing?

shaws profile image
shawsAdministrator in reply to Longinthetooth

Yes. Food reduces the TSH and could mean the difference of being given an increase or not. TSH is highest early a.m. and drops throughout the day so that's why we advise the earliest appointment and fasting (you can drink water).

thyroiduk.org.uk/tuk/testin...

Longinthetooth profile image
Longinthetooth in reply to shaws

ok

SeasideSusie profile image
SeasideSusieRemembering in reply to Longinthetooth

Yes, take your Levo after the blood draw, and don't eat on the morning of the test until you get home. Make sure that your appointment is no later than 9am for the blood draw.

Longinthetooth profile image
Longinthetooth in reply to SeasideSusie

Thanks for this.

bantam12 profile image
bantam12

25mcg is a tiny dose of Levo and you should have had an increase 6 weeks after starting it. Personally I would try to up the dose of Levo before swapping over to other replacements which can be expensive and at times difficult to source.

Longinthetooth profile image
Longinthetooth in reply to bantam12

Thanks. I'll do that.

Longinthetooth profile image
Longinthetooth in reply to bantam12

Sounds like good advice.

silverfox7 profile image
silverfox7

We all get a bit of a surge when we start a new dose as it's higher than before or as you are just starting it's making you feel better but until you are optimal you will probably feel like this at each dose change until you are on the right dose for you. So the i ritual surge makes you feel good but your body is really saying it's good but I can't sustain this improvement much longer so I need some more. We start low as our body needs to get used to the new medication plus we can have a reaction to the fillers in it so have to swap to another brand. So each new dose slowly builds up till we are at its maximum at around 6 weeks so that's why we have to wait that time before we can retest.

You should take the medication on an empty stomach with a full glass of water. Food interferes with it plus the water gets it down to the right place to get absorbed. You can continue to drink water but nothing else or food for an hour so that the medication is fully absorbed. It sounds forever but it passes quickly by the time up have showered dressed etc and prepared your breakfast (or reading these questions as I do!). If you look at the Thyroid Uk site who run this forum there are other things to help that you need to read about but shout out if anything you don't understand. We are all different so medication levels etc can vary a lot so keep up with retesting until you are on the best level for you and keep asking any questions as that is the best way to learn. Not all doctors sadly are experts and I think we learn more from fellow sufferers anyway.

Welcome to the forum, we are here to help.

Longinthetooth profile image
Longinthetooth in reply to silverfox7

Thanks. I do take the tablet while in bed & wait the hour. I was on Wockardt to start which didn't agree with me, aching legs & nauseous feeling. The fillers didn't agree with me. Now on Eltroxin which is OK. You're right about the doctors not knowing enough about this & I feel they don't really like being told which is why we go 'cap in hand'.

Thanks for the advice.

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