Thyroid Medication

[Jennymill1282]

Hi I’m hoping someone can point me in the right direction. I’ve been on Levothyroxine for 20 years and it has stopped working making me feel very ill... my doctors will refuse to give me T3 or even test my T3 as they are not allowed- so they say.

Even though suffering from swollen face, tiredness, mood swings, hair loss,weight gain etc all

The symptoms I had at 16 when I was diagnosed,

I have started buying T3 abroad and this has helped.

My own doctors refuse to help or even do a t4 absorption test while I’m onT3 (obviously the T3 helps the absorption) there advice is stop T3 for a few months then we will run tests

I am not able to do that without becoming extremely ill.

I am wanting to go onto Armour or Natural Throid.

I am happy to pay just struggling on where and how to get it...

Looking for any advice thanks in advance 😀

[Judithdalston]

Ideally you should get TSH, FT4, FT3, total thyroxin, two autoimmune antibodies plus folate , ferritin, b12 and vit D tested. You may need to do this at a private lab, as GPs rarely do all. Adding T3 is not an easy option, and if you have no idea where your FT3 stands in the range, rather pointless. Yes your symptoms could be just hypo, but they could also be due to low vit/ min levels...these need to be optimal, in upper part of range ( not just dr.’s ‘normal’) to improve conversion, and then to start adding T3 if necessary. Did you raise your levo. dose to see if your FT4 went just above range, what your FT3 was? Your levo.might not have stopped working, just needed reassessment etc.

[Jennymill1282 in reply to Judithdalston]

This answer is great Thankyou you really know your stuff... I’m going to look

At getting the testing done. Most certainly start taking vitamins.

[Miffie in reply to Jennymill1282]

Jennymill1282 it is advisable to have vitamins tested before supplementing. When these are optimal the levo does its job much better. Following treatment for low VitD I have seen some real improvement in how I feel. Good luck.

[Jennymill1282 in reply to Miffie]

Brilliant Thankyou for your advice i am going to do just that... just wish the doctors were able to provide such good information =)

[Jennymill1282 in reply to Judithdalston]

Further to your answer I started to feel extremely tired and all the usual symptoms with the doctors advising me I was taking too much Levothyroxine. My dose was reduced and I went even worse..

[Judithdalston in reply to Jennymill1282]

So few dr.s even consider that we may be vit/ min short, yet sometimes on this forum you see patients with all theirs actually deficient, yet still dr. does nothing, or not enough. Have learnt from own experience get these as good as poss. before juggling T3. Good luck.

[Hidden in reply to Judithdalston]

I asked for a vitamin D test but was ignored, so eventually got one privately. At least they took it seriously and prescribed a vit D supplement. But it also had calcium in it, which was near the top of the range when last tested, and the amount of vitamin D in it was so little it wasn't worth taking - around 5 x less than what I'd bought privately. And even with the higher bought dose (with K2 and Magnesium) my D3 had only risen a small amount!

[Judithdalston in reply to Hidden]

Well done DIY, often the way to progress...heaven’s knows where this vitD/ calcium nhs pill dates from as doesn’t seem to be right mix for anyone now!

[Hidden in reply to Judithdalston]

The prescribed dose was only 800iu, I found 2,200 too little and have recently increased to 4,000!

[MaisieGray]

Assuming you are in the UK, prescribing of T3 is not allowed to be initiated in primary care, ie by GPs; only by secondary care specialists such as Endos or Psychiatrists. The guidelines for this is the RMOC document of Nov 2018 'Guidance - Prescribing of Liothyronine'. In addition, the document states that "The prescribing of unlicensed liothyronine and thyroid extract products is not supported", and whilst some patients are prescribed an NDT, it is uncommon, not least because they are unlicensed in the UK. However, using this site, you can identify whether your GP practice and/or CCG do prescribe/allow to be precribed either Liothyronine or Armour. openprescribing.net/

Unless it is particular to your CCG, there is no rule preventing GPs requesting testing of FT3, but laboratories do often countermand such GP requests, which amounts to the same thing; and instead follow the protocol whereby unless the TSH is abnormal, the FT4 won't be tested, but if it is, unless it in turn is abnormal, the FT3 won't be tested. Regarding the T4 absorption test, I don't believe there is any evidence that endogenous T3 improves absorption of T4; but to measure the impact of T4 on TSH, FT4 and FT3 levels it clearly needs to be administered in the absence of T3. I'm not aware it is a test commonly carried out, and a few reports I've read have been to prove patient non-compliance rather than l-thyroxine malabsorption. Without sight of the results of your TFTs from when you were taking mono-T4, and now you are mono-T3 dosing, it's impossible to do other than guess what might be going on - do you have results that you can post? I would doubt though, that Levothyroxine 'has stopped working', rather that things have changed with you. In my case I was well for 30 years on Levo but everything went south with the advent of the menopause, so presumably a shift in sex hormones was likely involved. It might though, be any one or several of things that have shifted the goalposts in your case - poor nutrition through dieting, or through gut malabsorption - do you have Hashimoto's leading to leaky gut - or through allergies or intolerances, for instance. There might be stress factors, or the addition of other meds that are antithyroid, whiplash from an accident affecting your pituitary .... the list goes on. You might therefore consider having a comprehensive set of tests carried out privately, like many of us do, to include TSH, FT3, FT4, TPO & TG antibodies, ferritin, folate, vit D, vit B12; and then post them here for folks to comment. This link takes you to a list of commonly used labs thyroiduk.org.uk/tuk/testin...

[Jennymill1282 in reply to MaisieGray]

Hi Maisie. Firstly Thankyou for your response. It is so refreshing to hear from you having so much knowledge. A breath of fresh air for me. I have just ordered my blood testing and am off to purchase vitamins today. I will keep you updated on my results. Thanks again.

[MaisieGray in reply to Jennymill1282]

You're every welcome. I suggest holding back on buying the vitamin supplements until you've tested and identified what deficiencies, if any, you have. And avoid multi vits in any case.

[Jennymill1282 in reply to MaisieGray]

I will most certainly do that! Thankyou

[SlowDragon Administrator in reply to Jennymill1282]

Don't buy or start any vitamins until you have done testing

The exception is you could start a good quality daily vitamin C

Internet has wider selection on offer than high street often at a better price

[Jennymill1282 in reply to SlowDragon]

Thankyou 👍 much appreciated

[Suziemary in reply to MaisieGray]

Thank you for sharing the open prescribing site having just checked my surgery and found they do prescribe Armour and T3 . So I will be asking for a referral to a private endo! 😊

[MaisieGray in reply to Suziemary]

Suziemary You're welcome, it's a useful site. A couple of points - whilst a particular private Endo might want a GP referral before seeing a new patient, not all do, and you can simply speak to their PA for an appointment. So worth checking first before you go to the trouble of getting one. And secondly, even if a private Endo agrees you need/would benefit from an alternative to Levothyroxine, there is no obligation on the NHS GP to accept their recommendation and prescribe it to you, and you might be left funding a private prescription yourself.

[SlowDragon Administrator in reply to Suziemary]

The new guidelines on T3 specifically say, if diagnosed as needing T3 via private consultation this does NOT enable access to NHS T3

To qualify for NHS prescription diagnosis must be by NHS endocrinologist

One option is to see a recommended NHS endocrinologist privately, then transfer to their NHS clinic, assuming initial trial via private prescription goes well

Guidelines

sps.nhs.uk/wp-content/uploa...

Recent article in lancet

thelancet.com/pdfs/journals...

Damning article published last week by The Patients Association on the abandonment of patients who need T3

healthunlocked.com/thyroidu...

[janveron1]

Armour contains T3 so OK,, just go for it!,,

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