How to convince doctor to let me try T3 - Thyroid UK

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How to convince doctor to let me try T3

Galapagos profile image
6 Replies

Hi I had an increase in my Levothyroxine 75mcg daily from 50. I experienced headaches, nausea, palpitations, anxiety, sleeplessness - felt terrible. Reduced my dose back to 50mcg. Went to see Dr as alarmed at the neurological and physical effects I experienced realising that even on 50mcg of synthetic thyroxine, I also have effects. Worst among them is this feeling of just being 'dead' emotionally. I don't have feelings of low or elation, just 'dead'- everything a plod and I just keep going cause that's what I do. Think this is related to synthetic Levothyroxine and that if I had natural thryoxine, I may get my joie-de-vivre back..... Have been told I need to see one of the 'partners' as it's a controversial decision to prescribe T3..... Any thoughts about what I can say to bolster my chances??? C

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Galapagos profile image
Galapagos
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greygoose profile image
greygoose

Well, T3 is synthetic, too. And there's no such thing as natural T4 only. You'd have to take NDT. And you'd be very lucky to get that prescribed on the NHS. But even NDT isn't all that naturel, despite it's name. It is made from pigs thyroid, yes, but it has just as many fillers in the pill as synthetic T4 or T3. And it really, really does not suit everyone.

If I were you, I would be looking to see if I had nutritional deficiencies that stopped me increasing my dose. Because you need to be optimally nourished for any form of thyroid hormone replacement to work well. Ask for your vit D, vit B12, folate and ferritin to be tested. But, don't expect any help from your doctor with the results. They know nothing about nutrition and don't know what the word 'optimal' means. Post your results on here - with the ranges - and members will help you with them. And, while you're at it, get your thyroid results, as well, and post them, too. :)

Galapagos profile image
Galapagos in reply to greygoose

Thanks for this. I will get back to you. C

Rapunzel profile image
Rapunzel

What greygoose said. Here's a link to thyroid UK re testing - on the left hand side there's a page to clock on re private testing, if your GP won;t do all the things necessary. thyroiduk.org.uk/tuk/testin...

I recognise that 'dead' feeling my joie de vivre est morte :( bummer x

puncturedbicycle profile image
puncturedbicycle

Any idea if you're on *enough* levo to feel well? Your symptoms sound a lot like unrelieved hypothyroidism. I had all of them incl the emotional deadness. The last time I was hypo one of the first things I noticed was sleeplessness. These symptoms were all improved or relieved on enough medicine.

I am on 10mcg t3 as well as levo, and you may well improve further adding t3, but essentially no medicine will help you if you're not on the right dose. You may want to ensure you've given levo the chance to help you. If your gp is skimping or not paying attention you may find too little is almost as bad as none at all. You could succeed in getting some t3 but if you're on 50mcg levo and 5 t3 it will not help you if you need to be on 100 levo and 10 t3 if you see what I mean.

SlowDragon profile image
SlowDragonAdministrator

Most people on levo need low TSH around (or even slightly below) 1 to be adequately treated. Do you have your latest blood test results.

If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones, including T3) to work in our cells

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

(NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these. £99

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHSu) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

But as Greygoose says, don't expect medics to recognise nutritional issues or gluten as possible problems 😒

abi3 profile image
abi3

Hi. T3 changed my life. Being only on levothyroxine left me sluggish and in a constant fog. During that time my tsh and t4 were at normal range. (This was after iodine treatment for Graves)

My specialist explained that some people despite the normal results do not translate T4 to T3 effectively. I started on T3 liothyronine 20mcg and 75mg thyroxine. It took a week for me to feel as good as I did before getting Graves. I dont know where I would be without it.

It might not be true for everyone but it saved me.

That being said, 5 months ago i started feeling aches and sluggish again, but after many test the Dr discovered I was B12 deficient . The symptoms are the same as being hypo. I am now getting B12 loading injections and will be getting one every 3 months. Hopefully this will get me back to normal.

Hope this information helps.

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