Thyroid UK
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Sourcing T3

Hi all.

I am a doctor and clinical researcher in UK. My girlfriend, currently based in Sweden, but from Germany, was diagnosed with hypothyroidism in early 2016. She was prescribed 50mcg by her GP in Germany based on TSH, FT4 and FT3 results which she only got to see months later. Suffice it to say that it has done nothing. She has since put on 10kg and has begun losing a lot of her hair, which she loves growing out. So essentially a part of her identity is being swallowed. She sleeps through her alarms and is perpetually cold.

With my background, I understand the physiology a little better than a layman, but by no means better than most of them. However everything I've read recently on the science leads me to believe she will need to start a small dose of T3. With the help of a fellow doctor (endocrinologist), I have slowly made her increase her T4 dosage to 100mcg to see if there are any changes in symptomatology, and we have recently gotten blood tests as well, though we are still awaiting results.

I foresee that we will seriously need to consider T3 treatment, while I and my colleague make sure to helpher with basal temperature monitoring, heart rate, ECG and BP checks, and blood tests with careful titration. I do NOT foresee her GP prescribing it. And the UK is absolutely useless at prescribing it due to the cost of the medication. My friend herself admitted she wouldn't for cost reasons.

I understand that people here cannot disclose where to get T3 from in Europe or elsewhere on the forums. But could anybody help us out via PM?

Thanks.

22 Replies
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First you need to establish if she has Hashimoto's

Most likely as over 90% of primary hypothyroidism is Hashimoto's

50mcg is only a starter dose. It should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Under medicated leaves us with low vitamins too

Essential to test vitamin D, folate, ferritin and B12

Add results and ranges for Thyroid TSH, FT4 and FT3, plus thyroid antibodies

Plus vitamin results and ranges too

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

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Thanks ever so much for the extremely useful information Slowdragon. We have tested for most of those but there area couple there we have not tested.

So thanks again.

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If you add results members can advise

Extremely common to be left very under medicated

Many GP's and endo's seem to have little idea

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

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Thanks Slowdragon.

This is essentially what I am worried about.

I will post the most recent values as soon as I have them.

I don't however, expect the GP or endo to respond to our request for T3 even if results suggest that's what is needed.

Hence why I'd like to know what to do in case they don't prescribe it. Trying to get ahead of the typical back and forth between patient and doctor. 10kg when she runs 40 miles a week is not on.

Thanks again for the link. Will check that out as well. Are you aware of anywhere in the EU we might be able to get T3 should we be shot down? It seems to be the pattern from everything I'm reading. Even my endocrinologist colleague says that we are likely to get shot down. So I'd appreciate the help.

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Yes you can see endo privately and if FT3 is low some endo's will prescribe.

Some of us get on NHS still (myself included, only took 22 years!!!)

But she may be just very under medicated.

50mcg is tiny dose. For someone young and running/athletic 150-200mcg might be more typical

But we can only increase slowly one step at a time. 25mcg steps

High level exercise will lower T3 and probably not helping

First 3 steps are

Get vitamins tested and optimal

Dose Levo increased in 25mcg steps until TSH is around one and FT4 towards top of range

Find out if Hashimoto's, if yes strictly gluten free diet likely to help or be essential

If after all these FT3 remains low in 3-6 months then look at seeing endo for getting private prescription or NHS prescription

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

DIO2 gene test may be helpful in persuading prescribing too

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

Private prescription enables access to cheap French or German T3

£25-£30 per 100 tablets 20mcgs or 25mcgs compared to £950 here for 100 x 20mcgs. This is primary reason NHS want to stop prescribing.

Self sourcing without prescription via Greece, Turkey and Mexico supply can be erratic and you may have to accept change in brands from time to time

T3, just like T4 does not work the same from brand to brand. They are not bio equivalent. Trial and error what works for each patient

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Thanks again Slowdragon.

I will take these steps right away. I did read that excessive exercise can lower T3 levels and given her activity levels this makes a lot of sense.

Will post numbers as soon as I have them. I hope you can advise at that point.

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Yes. Make sure to tag me into the post.

This is such an active forum. Over 72,000 members and growing at well over 1000 a month

There are 2.2million people in UK on Levothyroxine. Probably at least 50% on nowhere near correct doseage or treatment

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Happy to do this. This might sound awful but how do I tag you?

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Your pick the @ sign and add name immediately after (no spaces and possibly case sensitive

Pick the correct one that comes up in drop down menu at bottom of page and then the name appears in Blue

Eg you

JT13

this then sends an alert to the person in Blue

You should get two alerts just now from me mentioning you in this post and also from replying

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Fantastic. Thanks again. I will tag you as soon as I have the results.

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We need your medical expertise to help get thyroid treatment improved. There are literally thousands whose lives are completely blighted by current mismanagement and poor treatment

NICE guidelines are currently under review. Due to publish autumn 2019

The number of patients left on 25mcg or 50mcg is heartbreaking

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 print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

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

Unfortunately most GP's have little idea that we need TSH so low.

Many are perfectly happy to get TSH anywhere in range, or often considerably above range.

And of course are usually very reluctant to consider "research" that patients take in off Dr Google

You can read people's profiles/stories too if they have filled them in.

Many regulars have had enormous battle to get well

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I somehow missed seeing this post SlowDragon. Sorry about that.

I am now acutely aware of the situation. I am looking at now being able to support the cause is whatever way possible. This all seems more than a little ridiculous to me.

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I suggest she would be infinitely bette to simply source Natural Dessicated Thyroid this has t1 t2 t3 t4 and calcitonin

Armour thyroid or ERFA or nature thyroid or Thyroid-s or thiroid or TR

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Hi all.

Thanks for all your help so far.

SlowDragon and anyone else who would like to help out: I have just been provided my girlfriend's Thyroid Function results as of 02/01/2018. I know a lot of time has passed since that date but the results are from her GP's practice in Germany, and she is now in Sweden.

02/02/2018

TSH basal - 5.05 (0.35 - 4.50)

Free T3 - 3.5 (2.0 - 4.2)

Free T4 - 1.0 (0.8 - 1.7)

Her TSH level is very worrisome to me.

Currently she is taking 100mcg of levothyroxine. But at the time of testing (02/01/2018) she was on 75mcg, coming up from 50. I personally suggested the increase purely based on symptomatology (weight gain continuing, not waking up, feeling more and more tired), as it was impossible to get her over to Germany for testing. Since then she doesn't think she feels any better however. I suppose one good thing is that the weight since Christmas has been stable. But she still feels like no amount of exercise will get the weight off, and she does a lot of it.

Just so you know how badly this has been managed, I actually had no idea she was taking levothyroxine for nearly half a year, because nobody impressed upon her the significance of being diagnosed with it, and she didn't feel she needed to tell me (as is her right).

Her last blood tests (a large panel which also included thyroid function) before these were on 17/06/2016. TFTs here:

17/06/2016

TSH basal - 4.43 (0.35 - 4.50)

Free T3 - 2.7 (2.0 - 4.2)

Free T4 - 1.2 (0.8 - 1.7)

Before that she took a similar full panel on 11.04/2016

11/04/2016

TSH Basal - 2.3 (0.35 - 4.50)

Free T3 - 2.6 (2.0 - 4.2)

Free T4 - 1.4 (0.8 - 1.7)

Based on these results, it would appear she doesn't have a conversion problem. Would that be a correct assessment? Would I be right in assuming that she should take 100mcg now for a month or so until we get another panel of thyroid tests? Is T3 necessary as it would be more reflective of the euthyroid state?

Also, because Slowdragon mentioned this, I have some results for Vitamins from her 17/06/2016 panel:

Vitamin D3: 44.8 (>20ng/ml)

Vitamin B12: 438 (for some reason the range is not on the lab report, but I will try and find out by calling them).

I plan on asking her to fly over to either Germany or the UK (whichever is cheaper) for a full panel including everything you mentioned I should ask her to test, Slowdragon.

Thanks all. Do let me know what you think. I apologise for the late provision of results, as I just got them. It has been a stressful time personally, and a busy time professionally.

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Hi.

You will need to add the ranges for those results to make any sense. Lab ranges vary from lab to lab.

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Sure, thanks for the input!

Ranges below

TSH Basal: 0.35 - 4.50

Free T3: 2 - 4.2

Free T4: 0.8 - 1.7

Vitamin D3: >20ng/ml

Vitamin B12: for some reason this not on the lab report, but I will try and find out by calling them.

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It would be really helpful if you could edit your post with the lab results to add the ranges. Most people will be looking at this on their phones and it will make it much easier to see what's going on. If you click on the little arrow sign to the right of the 'Like' button, it will give you the option to edit.

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Done!

And thanks again!

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To be clear

Had she started taking Levothyroxine at 50mcg for tests on

11/04/2016

17/06/2016 ?

Her test results from 02/01/2018

How long had she been on 75mcg before this test?

The general rule is minimum of 6-8 weeks, between increase in dose and testing

TSH is too high, but FT3 looks OK and FT4 is quite high

We can't rush putting the dose up. The body needs time to adjust

You may find increasing to 100mcg might push FT4 over range. Provided she doesn't feel hyper, stick on it and retest after 6-8 weeks

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits, best to make sure to only get that one at each prescription. Especially watch out for change of brand if changing dose.

Vitamins

Vitamin D in UK measured in nmol

Conversion website

endmemo.com/medical/unitcon...

40ng/ml is roughly 100nmol. Which is what's recommended here so it's fine

Good idea to supplement in winter - 1000iu daily, may need more

B12 possibly a bit low, obviously need range

No folate or ferritin results

Most importantly no TPO or TG antibodies

For full evaluation she ideally needs TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Private tests are available

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.

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

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Her lab results are not terrible. The TSH is obviously high, but we often see TSHs of 30 or more here, so not as bad as some. The normal ranges are just that, ranges of normality, in that unless we know what her normal TSH etc was prior to her thyroid playing up, we don't know how much is has changed. What is normal for one person may not be normal for the next. Mine only got up to 5.6 and I felt very run down & used to fall asleep inconveniently.

Generally, a freeT3 in the upper third of the range would be good aim, and a freeT4 at least half way (although others / admins may have more specific suggestions)

The goal TSH for someone on Levo is under 1, so your GF was definitely undermedicated at the time of the last test. It takes between 4 and 6 weeks for the effect of any raise to fully kick in due to the long half life of thyroxine, so it would be sensible to retest again once that time has elapsed since her last raise, and add another 25mcg then if required (then retest in another 5 or 6 weeks and so on)

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Thanks so much.

Would you recommend doing just this for now? I can get some repeat bloods while she is here in the UK the middle of next month (will be 5-6 months by then).

Should we simply stick with levothyroxine now and not bother with T3 just yet? Would it help to improve her TSH levels to start on a small dose of T3 (5mcg) along with her current dose of levo?

Thanks again.

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If it were me, I would try and get better levels using Levo only to start with. Once you start using T3 there are a whole new load of things to juggle. When I added 5mcg T3 my levels actually got worse as my own conversion lessened, and didn't get to a decent level until I was taking 20mcg per day in split doses. This is known as the negative feedback loop.

Have a look at the Medichecks website. They do offers on some thyroid tests each Thursday and are reasonably priced. You get a short Drs report with results and if you have any queries you can ask for one of their Drs to give you a call back. They are very helpful, so if you have any queries about choosing a test pack you can give them a call.

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