Thyroid UK
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Help and info please I'm suffering with hypothyroidism wanting to try T3

Hello I am new to this I've only posted once before so please bear with me! I will try to explain in as few words as I can! And may not be able to respond very quickly to comments.

I was diagnosed with an underactive thyroid back in 2014. I found a goitre 6 months after I had my first child. I was started on levothyroxine and have been on it since then. I'm currently taking 100mcg. I haven't really felt well, well not since I was a teenager! I am 32. Before I'd had children I had my TSH tested it was borderline but never treated.

I have had a second child and since then I've been suffering and can't seem to get myself better or level. My second child is now 20 months. A year ago I was really suffering with debilitating fatigue, joint pain, brain fog among other things. I felt horrendous like a zombie! So have been on a mission to try to get better for myself and my family. Doing a little research and from my only post on here I have discovered I have hashimoto's so I am now gluten free this has helped a bit but I am still struggling. Having two young children doesn't help but it's definitely more than just being a mum. My GPs I've seen have been very unsupportive just saying having a young family is hard work! and its depression which I definitely don't have depression. I only feel low in mood sometimes because of how I'm feeling, which is pretty wretched. I can only describe it like someone has turned off my engine. I feel like I'm treading water or like I'm getting flu. Sometimes I feel slightly "normal" for it to only last a very short while. I have a little bit of energy in the morning but it's spent after a few hours and hits me like a brick wall.

I have seen several endo's who wouldn't have a proper conversation with me, they just don't want to know because I wanted to try a combination of T3 and T4 to see if this could help me. Until I was referred to Southampton hospital to a very good endo who wrote to my gp to prescribe me T3. My GP said he can't as he isn't allowed to prescribe it and the endo can't because her ccg would have to fund it and they won't so I am back to square one!

I am now looking at self medication buying it online I am hoping someone can give me a little information on how to safely do this I am nervous of buying fake drugs. I have been told to start on 10mcg liothyronine and 75mcg of levothyroxine a day then poss increase to 20mcg of liothyronine and 50mcg levothyroxine. All I can seem to find to buy online is 12.5mcg or 25mcg tablets? I am finding it a little confusing. I've been told only buy unipharma is that correct?

I'll put my latest bloods if anyone needs them... something else to add I've just been prescribed vitamin D by gp because my level is low I've only been taking that for 2 weeks a high dose twice a week. My feritin was low but I haven't taken any iron for that. I can update my bloods later as this is all I can find for now unfortunately they didn't test FT4 this time! And I can't remember my last reading off the top of my head now. My antibodies are still high too

TSH 0.39mu/L (0.55 - 4.78)

FT3 4.4pmol/L (3.5-6.5) This has never really changed it fluctuates between 4.1 - 4.4

B12 253ng/L (211-911)

folate 5.55ug/L (3.38-23.9)

Serum total 25-OH vit D level 26nmol/L (50-374)

Thank you for any help and comments I know unfortunately there are many people out there also in my shoes.

5 Replies
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Could your Southampton endo give you a private prescription? This would enable you to get access to French or German T3.

German Liothyronine is Thybon Henning 20mcg and comes as 100 tablets for £30 approx

You could ask you endocrinologist to write private prescription for 100x 20mcg Liothyronine

It is only available with a prescription

French is 25mcg. Someone may give you more info. Here's some old posts about this

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...€20-for-30-tablets-25mcg-from-boots.-feeling-miles-better

Private prescription £1 a tablet

healthunlocked.com/thyroidu...

It's totally unacceptable that you are finally diagnosed as needing T3 and nether endo or GP will prescribe

Did you see Southampton endo on NHS, if so you should be able to get your CCG to fund. Contact your local PALS for advice on how to proceed

Why not even contact BTA - these guidelines clearly show you should get NHS trial

british-thyroid-association...

But before you start T3 you really need to get all your vitamins at better levels first

Vitamin D should be supplemented until level is around 100nmol

Ferritin about half way in range

B12 and folate are both low, but not low enough probably for GP to treat

You could start supplementing a good B complex that contains folate. You might also need a sublingual B12

All these are low because you are obviously needing higher dose/T3

Here's a typical post on Low vitamins due to under medication and detailed supplements advice on how to improve including magnesium and vitamin K2 when on high dose vitamin D

healthunlocked.com/thyroidu...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

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Thank you so much I will have a look through all your helpful info tomorrow really appreciate your response thank you again. I didn't know any of that, I have lots to learn!

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Just to add, Unipharma T3 is now very difficult to obtain. Even Greek residents are having to show their prescription and generally can only have one packet at a time. Be very wary of anyone supposedly supplying Unipharma, one supplier used by many members has been taking orders and payment and not supplying for many months, then started sending a substitute to some people and not everyone gets on with that.

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hi you can try Dr Z <redacted> who works at Nuffield Health, Gatwick and at quite cheaply, or NHS at East Surrey (although you may not get him if you go NHS because he's part of a team. Direct from

<redacted link>

[ Edited by admin:

26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.

24. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire. ]

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There is a private GP in Winchester who prescribes T3 you could try him just google the name OK?

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