Advice please

[Charli58]

Hi I am new, I was diagnosed with hypothyroidism /Hashimoto’s in 2013 and never felt right on any dose of Levothyroxine. I carried on this way until 2015 when my second endo identified me as having a clinical need for T3 since my conversion from T4 to T3 on Levothyroxine was not good. I noticed an immediate difference in symptoms and my endo was happy for me to continue on T3 since it helped.

This endo however now works in London and my GP surgery will not let me travel to see her because they have said for me to make a long journey to London for an appointment that only lasts a few minutes would be pointless for me.

The endo I have been assigned did not increase my Levothyroxine after my T3 was taken away in June 2017 and my symptoms are now so bad they are affecting my day to day life – dry skin, tiredness, depression, muscle stiffness, constipation, heavy periods, memory loss, confusion, feeling cold, weight gain and I never had any of these when I was taking T3. These are having such a profound effect on my life that I have gotten tearful at work over mistakes that I overlooked and that I wouldn’t have overlooked had I have not had my T3 taken away.

I have adjusted the dose of T3 myself during times where I did not feel a hundred per cent and though I felt more mentally clearer my endo and GP told me off for taking too much and to reduce before the T3 was taken away.

I feel like I have to do something about this.

I now take 175mcg Levothyroxine. If anyone could advise I would be grateful.

Serum TSH *5.6 (0.27 – 4.20)

Serum Free T4 13.8 (12 – 22)

Serum Free T3 3.5 (3.1 – 6.8)

[Clutter]

Welcome to the forum, Charli58,

I think you should make a written complaint to the head of endocrinology or PALS at the hospital. Withdrawing T3 without adjusting your Levothyroxine dose was effectively a dose reduction. You are undermedicated on 175mcg and that is why you are symptomatic. Explain the effects this has had and say that as per the BTA FAQs statement issued in Dec 2016 you felt well on the combination Levothyroxine + T3 and would like your Liothyronine prescription restored.

Ask GP or Endo to increase dose. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.27 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[shaws Administrator]

It should be illegal to withdraw T3 when patient has a clinical/medical need for it. They just seem not to care that the patient becomes much more unwell.

Tell them that if they don't reinstate your T3, and you do know it is mainly because of the cost, but that its not your fault that the pharmaceutical company has overcharged for T3.

Many of us don't get well on levothyroxine alone and have to have T3 added. Some need T3 alone.

Some members have had to source their own but no information is allowed on the forum of prescription medications. You can put up a new post asking for information or maybe one might send (or ha sent) you information. We shouldn't, if the UK, be sourcing our own thyroid hormones but of necessity we have to.

[SlowDragon Administrator]

Have you had vitamin D, folate, ferritin and B12 tested since T3 was stopped?

Highly likely these have crashed right down

We can not use thyroid hormones if vitamins are too low

Post the results if you have them. If not insist that GP test these.

You have recognised clinical need as agreed by an NHS endocrinologist. It is directly against medical guidelines to have this stopped

T3 is not blacklisted, you can and should be prescribed

Contact your MP too

lynmynott is collecting evidence about this to present to NICE

Please email your experience to [e-mail]

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

Do you have Hashimoto's (high thyroid antibodies?)

[Charli58 in reply to SlowDragon]

Thanks vitamin and minerals have probably crashed but can't get blood test for these done until after appointment on 20 Dec. I have antibodies of TPO 675 (<34) TG antibodies 566.3 (<115)

[SlowDragon Administrator in reply to Charli58]

Can you afford to do your own vitamin tests?

Or ring receptionist and request blood test form to get NHS to do BEFORE appointment

Or make an on the day urgent appointment to see any GP

You need 25mcg dose increase, plus very likely to need serious vitamin supplements before reinstating T3

Private tests

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email [e-mail]. print it and highlight question 6 to show your doctor.

If you need a new more local T3 friendly endo.

Email Thyroid UK for list of recommended thyroid specialists [e-mail]

Recent Scottish parliament debate on T3

scottishparliament.tv/meeti...

[Charli58 in reply to SlowDragon]

Thanks for reply I called my GP surgery today and the earliest I could speak to a GP was Thursday and that was a phone consultation. I plan to send a letter to my local MP if this is possible.

[SlowDragon Administrator in reply to Charli58]

I would. Others have had more response with face to face meeting. Perhaps start with letter