I get my thyroid treatment from overseas, but I shouldn’t have to

This post really resonates with me as after being told for years that my TSH thyroid result was fine on levothyroxine alone and that my symptoms were probably due to the monopause, I did my own research. 

Like Katie I sourced private blood tests which showed a normal TSH, T4 at the top of the range and a low T3 result. A couple of times I become overmedicated suffering symptoms associated with an over active thyroid which was extremely unpleasant. Finally a private genetic test  showed that I also have the  genes which cause poor conversion of T4 to T3. When I tried to discuss with a GP I was totally dismissed. 

I was recommended a local endocronologist who I saw privately. She agreed to a trial of T3 and T4 in combo and after 2 days I felt transformed for the better. From barely being able to stagger 3 miles I walked for 16 miles without a problem. I was no longer making mistakes at work, most of the normal symptoms listed on the NHS website disappeared  

My first 3 month prescription was an eye watering £724. I also found cheaper alternatived until I managed to get transferred to the NHS and finally got my prescriptions from my GP and a shared care agreement. 

Without much perserverance and the income to pay privately I would still be living a half life undermedicated on levothyroxine. 

Current NICE guidelines and GP training do not favour people like me with T4 to T3 conversion issues. 

Thank you Katie for writing your story. I was diagnosed in 2016 at the time pharma companies had hiked the price of T3 and it was added to the NHSE Policy "items not routinely prescribed in primary care" because of cost. T4 did not make me well, restore my ability to work fully or allow me to exercise. I eventually found an endocrinologist who worked with me and saw a transformation in my health stats when T3 was added. I tire of the gaslighting thyroid patients experience. T3 is not right for all patients but neither is T4 monotherapy. In the past I have had to lie to doctors about where I live to obtain T3 prescriptions because of the NHS T3 postcode lottery. That meant I did not have day to day access to a GP for care if I needed it. Luckily I didnt. When I moved again into an ICB that prescribed T3 I had my medical records illegally accessed (I dissent on sharing because I have seen blanket T3 deprescribing) and an NHS endocrinologist who had never met me or access to my full medical notes tried to deprescribe me. I fought back and have kept my NHS T3 but it remains a constant stress that T3 will be removed and I will be pushed to private sources. My GP admits he knows nothing about thyroid treatments and allows my private endocrinologist to monitor me. I pay for that and private blood tests. It is not equitable that a drug the NHSE recognises as a legitimate treatment is subject to postcode prescribing and patients are not able to have the confidence they will not be dismissed when they ask for alternative treatments to be considered. T3 now costs NHS about £25 to £50 a month for most T3 patients. It is not expensive compared to many treatments available in the NHS. It is certainly a small price to pay for patients to get back to work and have a quality of life. 

I'm in the same situation.

Somewhat irritatingly the senior endocrinologist here helped discover the gene mutation that results in less FT3 after thyroidectomy (THR92ALA-DIO2) in >16% of the population, but when I didn't recover well after my final thyroid surgery I had multiple appointments with endocrinologists who declined to trial T3 because I should speak to the more senior endocrinologist. After several years of them retesting the same things I did the obvious thing when your TSH is normal, your fT4 is elevated, and your fT3 is borderline low, tried adding some T3, and immediately cured my diarrhea, and raised my testosterone up from borderline. 

But now daring to try the obvious, finding it worked, the NHS doesn't want to know. The endo didn't even tell me to stop, as he must realise I need the medication, but by not prescribing it the NHS washes its hands.

I actually can't tolerate levothyroxine. within 10 days of taking it, it makes me extremely ill. Very severe dizziness, nausea, even worse fatigue, insomnia etc. I tried every brand and liquid available over some months, also microdosing over months, and the result was the same. My symptoms were such that I was bedridden and unable to do anything much. Despite pleading with local endo consultants multiple times for help, they refused a trial of T3, as my local NHS Trust are ignoring NICE guidelines on this and stick to their own internal policy of not giving T3. They also refused to trial me on Tirosint (a form of levothyroxine with no fillers). I was also told I had M.E (with no robust proof or testing for anything else other than an AM cortisol blood test). I was referred to a consultant about M.E by my GP. The M.E consultant did not feel I had M.E (in a surprise to nobody). The endo consultant refused to do anything further as my TSH wasn't over 10, despite my T4 being very low.  As I was left bedridden, I had no choice but to go private for thyroid care. I was prescribed tirosint and t3. Both of which I can tolerate and I am now no longer bedridden and making a recovery. I shudder to think what would have happened to me if I hadn't been fortunate enough to access private healthcare. So far my dry skin has improved, my hair is no longer falling out and is growing back, I've been able to halve my reflux medication, my menstrual cycle has normalised, and fatigue is improving. It is worth knowing that liquid T3 is now available in the BNF for £32 a bottle to the NHS. Thus meaning T3 can be titrated cheaply and very exactly. Hypothyroid are in the NHS is now so bad that patients are having to either go private, or self source. Negligence is also enshrined in local policy in my area

It is shocking that you can be knowingly left undermedicated and have to purchase T3 privately.

This story is very similar to mine. I was put on T4 but remained very ill. Did research and paid for private blood tests and discovered that despite TSH and ft4 being optimal, my ft3 was low.... I was not converting. Referred to an endocrinologist who told me there was no evidence T3 is beneficial to patients. 

So had to go it alone with no support or monitoring. I bought online, started on a very very low dose and it changed my life. I had a life again. Have now self sourced T3 for years now. My GP is aware, it's on my medical records but there is no monitoring. My GP has admitted that I know more about the thyroid and my levels than he does. 

I would love to have options (eg T3 or NDT) and proper medical monitoring by a medical professional but I'm stuck buying it myself, just to be well. 

Thank you Katie for your hypothyroidism journey. 

My journey - I'm taking T3 monotherapy, 40 mcg supplied by the NHS and the rest I buy off the internet.  Its been a lifetime's hypothyroidism journey for me starting from age 7.  I spent 26 years on levothyroxine, and just got worse, hair falling out, (still have a patch I cover up), teeth in poor condition, my finger nails I used to bandage them individually as they split, such rough skin on legs, arms, my stomach flopped, body swelled, (still does), and for a time, told "don't come to the surgery so often", "go home and weep for the woman you were", when I just wanted to feel human. 

I developed other diseases along the way, lupus, associated sojgrens, antiphopholipid syndrome, diverticulitis, pituitary apoplexy, Menieres, IBS, osteoarthritis, ME, benign essential tremor, asthma, and others.   

A surgery nurse started to take me under her wing, sent me for all sorts of tests, which started my journey back to a form of wellness, via a haematologist, rheumatologist, endocrinologist, neurologist, dermatologist, support groups, and finally doing my own research which led me to believe that levothyroxine was harmful to me, and liothyronine might be the answer, which it has been.  It took 40 years to find that my pituitary TSH didn't work, that I have polymorphisms in DIO2 and DIO1, I don't process Vit D, nor Thiamine in my brain.  I have 'bottlenecks' in several thyroid pathways.  

We are individuals, need individual treatment, which currently does not exist within NHS.  I'm not sure it exists in the private endocrinology sector either.  The current testing protocol is woefully insufficient, the Endocrinologists and GPs ignorant of the harm caused by treating us as a 'human female herd'. 

MHRA uses out of date information in SmPC for levothyroxine and Liothyronine.  In 1977 Surks & Oppenheimer in The Journal of Clinical Investigation demonstrated that T3 exhibits a tenfold higher affinity for the nuclear receptor than T4, confirming T4 is a prohormone.  While current hypothyroidism treatment (levothyroxine) wallows in pre-1977 clinical practice, ethics 'has walked' and sanity (in the form of all suitable products need to be allowed on prescription) to be reinstated.    Other organisations have tried to help, but are tied up by MHRA and deciding that '  a medicine's biological action would not be reflected in the SmPC', which it should. 

I was diagnosed with hypothyroidism about 25 years ago by my NHS GP at the time. 

To this day, I’ve never been tested for anything other than TSH by the NHS and I don’t know whether I have the usual Hashimotos or something else. 

I took Levothyroxine for many years but I’ve never really felt well since - that’s 20+ years of not feeling on top form. 

Looking at the family tree, on my father’s side, 2 of his siblings have hypothyroidism (a third died before he could be diagnosed)  Now in my generation some of my first cousins have already been diagnosed with hypothyroidism too. When I asked about genetic testing I was more or less laughed at! 

About 10 years ago after reading up on thyroid issues I realised I was never going to get any further with the NHS, even the GPs are blocked from accessing anything other than a TSH blood test. I asked my GP at the time THREE times for a referral to an endocrinologist but was refused as my bloods were in range. So if I’m adequately treated why do I still have all the symptoms of hypothyroidism? No response. 

Then I researched for a private endocrinologist who might be open to looking at other treatments. I found one but he wanted a GP referral so I booked to see another GP in the practice who was happy to provide my privately funded consultation- this was emphasised to me!!! 

I wrote to the consultant to advise him of everything I had tried to date. When I had my consultation, he thanked me for my letter, then said he would recommend my GP to try me on a small dose of Liothyronine together with a reduced dose of Levothyroxine. About this time I moved house and the new GP wrote to request funding from the CCG, which was agreed given it was such a tiny dose. (Initially I had to cut the tablets in half). 

I am now a pensioner and unable to afford a further consultation or private medication. The NHS needs to completely overhaul and review the blood tests and medications available to patients. I, and thousands like me, shouldn’t have to suffer! It’s interesting that there are adverts on TV for painkillers where female patients are not taken seriously for their pain, many have been told it’s all in their head. It seems a similar attitude is at play here given the majority of patients suffering are female!! Come on NHS start basing tests on women too. 

All I want is access to medication which will work for me and other hypothyroid patients. 

 I diagnosed with “sub-clinical hypothyroidism” by an unrelated speciality, put on 25mcg by GP who was frustrated that my blood results hadn’t been shared. They explained it affected “every process in the body”. 

I had no understanding of the long term implications, it was my mother who explained I would be taking levothyroxine for life.
 

I was simply terrified that the nodule in my neck could be suspicious, thankfully it wasn’t. I was in my early twenties at the time. 

I never noticed any symptomatic improvements with energy/weight etc once treatment commenced. The dosage has never been changed, despite now being in my late thirties & approximately 15 years passing.

In this time, I developed ‘full’ hypothyroidism & other health problems. I learnt I have thyroid autoantibodies.  I believe this is indicative of hastimotos thyroiditis. 
 

Getting regular annual blood tests set-up at the GP is challenging, but on occasionally successful. 

A change in medication was denied due the thyroid panel results despite being heavily symptomatic - it was noted in my record at least but no action taken. 

Private care shouldn’t be the norm when we are issued with nhs prescription exception certificates