My path to combination therapy

[Morphiouso]

I was diagnosed with hypothyroidism about 25 years ago, in my mid-thirties. For almost 20 years, I took only Levothyroxine. I realise now that I was probably depressed for the whole period.

Back in 2016, I decided to quit drinking alcohol. I wasn't an alcoholic, but I was drinking every day, and sometimes it had a very bad effect on me, causing paranoia. So, I quit, and I remained abstinent for eight years. Immediately, I realised that the feelings I had attributed perhaps to a mild hangover were still there. I began to look for other causes and eventually realised it was my thyroid condition that was making me feel bad.

As a test, having realised I was likely feeling unwell because of my hypothyroidism, I took myself off levothyroxine. Quickly, of course, my TSH level went very high, over 25. My doctor asked what happened, and I explained that while I knew my thyroid condition needed treatment, I felt the Levothyroxine wasn't working effectively. I inquired if there were any other options.

After our conversation, where I explained that it seemed strange to me that when taking Levothyroxine at a certain level, my free T4 came within normal range, but my TSH was still high, he understood my point and prescribed me liothyronine, initially at 10mg per day. The result for me was amazing, a miracle, quite incredible. I felt well, energetic, and free of dark thoughts. Eventually, I settled on a dosage of 100mg T4 plus 20mg T3 per day, and I felt great.

Then, a couple of years ago, my GP refused to continue prescribing liothyronine. They said it wasn't the standard treatment for hypothyroidism on the NHS, citing established guidelines. I tried cutting down on the T3, and immediately I felt depressed again, even having thoughts of death. I strongly complained and got a referral to a consultant who, unfortunately, didn't even turn up for the appointment.

I began buying my T3 from Greece, at 3 euros a month. My GP has recorded this in my medical notes.

With a dosage of 100mg T4 and 20mg T3 per day, I feel great. My T4 and T3 levels are within normal range, and my TSH is a little low at 0.5. However, any reduction in T3 brings back the depression, so I manage with the slightly low TSH level

[arTistapple]

Can’t help thinking that your treatment via your GP, our NHS? in the U.K. has acted very badly indeed. In some areas T3 is back on the menu but it very much depends on your post code. We find ourselves battling with GPs and endocrinologists and finally with other specialisms (Co-morbidities - effectively poorly treated hypothyroidism). Endocrinology seems to be a department wholly working to its own ends and holds all the cards with virtually no communication with other departments.

Well done you for sorting yourself out. Maybe now worth pursuing your treatment package again through your GP - if you have the stamina!

[Morphiouso in reply to arTistapple]

Thanks for your reply, I'm lucky that I finally worked this all out for myself, I feel angry that there must be many thousands of people in the UK with the same issues but don't realise there are solutions. The hypothyroid induced depression blighted my life for way too long, and as is the case with many mental disorders, I didn't realise for many years that things could be different.

[arTistapple in reply to Morphiouso]

Yes. About 140,000 of us on this Forum alone. It’s why I am so pleased for you.

[pennyannie in reply to Morphiouso]

Ditto :

[pennyannie]

Hello Morphiouso and welcome to the forum :

Your story is not uncommon and many of us have been forced into self medicating because of mis-interpretation of guidelines and ICB funding restrictions.

If you go into openprescribing.net and then analyse you can see by area and doctor's surgery how supportive an area you live in - and this has become a post code lottery with mostly women suffering the stupidity of this health issue -

Your doctor could write you a private prescription for T3 - Liothyrinine and you could then get this filled through any pharmacy - though doubt at a similar cost to Greek UniPharma T3.

We do now have Roseway Compounding Pharmacy offering a consult service ( much cheaper than seeing a specialist ) rosewaylabs.com -

who are supportive of thyroid patients and will prescribe all the treatment options after, I would imagine, a current blood test result and conversation.

Full details on all Pharmacies and services on the Thyroid UK website - thyroiduk.org - who are that charity who supports this patient to patient forum.

I've been self medicating some 6 years now as I was refused both T3 and NDT through my doctor and hospital and am with Graves and post RAI thyroid ablation 2005.

Well done for cutting out the alcohol and finding your own way out the hole we tend to fall down when the NHS fails to support better thyroid health for everyone.

P.S. If you want to continue sourcing your own T3 - just start a new post asking for Private Messages as to a reliable T3 source as we are not allowed to openly discuss this subject -

a PM reply sees your Chat ( paper plane ) Icon light up ( alongside the Alert Icon ) that will light up with any replies - like this one - and just press that if lit - and this takes you to a one to one private conversation :

[pennyannie in reply to pennyannie]

Just added a PS that you've probably missed as we crossed messages over Heathrow !!!

Morphiouso

[Morphiouso in reply to pennyannie]

Somebody replied and shared a site I had forgotten I'd used in the past, sourced from Greece. Hopefully my friend in Greece will be able to get me some soon also, his pharmacist says there is a shortage, but perhaps that is just locally, I might just jump on a an EasyJet and pick up a load, the over the counter costs there are so much lower than we can source online for the same product by a factor of 10, 30 25mg tabs are only about 3 euros over the counter in Greece, even one years supply would justify the flight cost and perhaps a little break into the bargain

[RedApple in reply to Morphiouso]

'might just jump on a and EasyJet and pick up a load, ' Members here have reported difficulties in doing this in recent times. Apparently pharmacists frequently don't supply without prescription now.

[Morphiouso in reply to RedApple]

I have not heard this, my friend spoke with his pharmacist yesterday and there was no mention of needing a prescription, I suspect that perhaps because many of us are sourcing online that a large black market has developed, it maybe the case that pharmacists are resisting purchases from people whom they suspect are selling it on.

[RedApple in reply to Morphiouso]

Might also partly depend on where in Greece you go. But I think you're right about the black market aspect. Members have reported being able to buy only a couple of boxes per pharmacy these days.

[pennyannie in reply to Morphiouso]

Yes I understand and you are fortunate that you are well enough and able to ' just jump a flight ' and many have done this before - but found currently that they are having to travel much further, picking up less stock than previously - so just be aware,

Having a ' friend with a local connection ' obviously helps and just be aware that you may now be contacted by others, not able to make the flight.

Scammers are also on websites and why private messages are available and please check out any contacts you may get with Admin - before parting with any money if you go this route.

You owe it to yourself to try and get NHS acknowledgement and a prescription for T3 and once you know you have your back up in your own medicine cupboard please try through the official route for longer term issues.

When taking any form of thyroid hormone replacement that contains T3 the TSH will likely ' go ' slightly lower than the range - and that is ok - and in all honesty once on any form of thyroid hormone replacement we should all be dosed and monitored on the Free T3 and Free T4 and not a TSH anyway -

though mainstream medical seem to think the TSH the gold standard and all that is needed :

[Morphiouso in reply to pennyannie]

While I am sympathetic to other people's predicaments, I am not going to source drugs for others, I have a strict don't break the law policy for myself, reselling prescription drugs in the UK is illegal.

[pennyannie in reply to Morphiouso]

I'm not suggesting that - we seem to have misunderstood each other - please just be aware !!

[Morphiouso in reply to pennyannie]

I agree about free T3 and T4, I've found it almost impossible to get the NHS to even test T3, I use Randox now.

[pennyannie in reply to Morphiouso]

Yes - I know - if you press my icon alongside my name you can read my thyroid journey and all I've replied to on this amazing forum.

[Morphiouso in reply to pennyannie]

Thanks for your reply I will check the resources that you have shared

[SlowDragon Administrator]

increasingly possible to get T3 prescribed on NHS …..but initially has to be via NHS endocrinologist

over 66,000 prescriptions in U.K. in last year and number rising steadily

openprescribing.net/analyse...

Some areas more amenable than others

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

BEFORE booking any consultation get FULL thyroid and vitamin testing

What vitamin supplements are you taking

Is your hypothyroidism autoimmune

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee