At the end of my tether - should I get treatment in Europe?

[telbel6]

Hi everyone - I've found this forum and it is fabulous. Well done and thank you - and sorry for the long post.

I've been dealing with so-called subclinical hypothyroidism for more than three years. It runs in my family  - mum, sister and maternal grandmother all diagnosed and on full meds for years. They live in the US so obviously they're not having a problem getting treatment.

I've had the full range of symptoms:  severe fatigue and energy 'crashes', thundering palpitations, massive weight gain, scary hair loss, freezing hands and feet. In the past few months I've developed a huge swollen tongue - it's horrible. I have trouble swallowing and seem to have continual lump in my throat. The problem now is that the swollen tongue and constricted throat have contributed to a severe case of sleep apnoea - my ENT says I gasp for breath 42 times an hour so can never get a proper nights rest.

Absolutely desperate and sleep deprived I went back to my GP.  I showed her two studies I'd printed out which point to a clear causal relationship between low thyroid function and apnoea.  She agreed to order another round of tests but pointed out that as my last results in November 2015 showed a TSH of 3.99 and T4 of 11, it was unlikely I'd be treated. Despite the horrific symptoms.

My TSH has ranged from 4.67 to 3.67 over the past three years - in most other countries in Europe I would have been given medication straightaway and I'm sure this sorry tale would not have ended with a sleep doctor trying to force me into a CPAP mask (that's a story for another forum).

Does anyone think I should just give up on the NHS and travel to Germany or Sweden or Belgium where the range for a diagnosis is more sane? Would I then have to get prescriptions from there and forfeit my right to UK prescriptions forever? Would it anger the UK doctors so that I'd lose my chance to be treated here in future?

I'd go private in the UK but it doesn't seem like there are any doctors left here who are willing to prescribe inside the ridiculous 'normal' range enforced by the General Medical Council. If anyone has a name or two please send me a message.

Another thought - has anyone tried to use the EU rule on cross-border treatment to see a doctor in Europe and have it paid for by the NHS? It usually only applies where there's a long waiting list in the UK, but I'm wondering whether a test case could be made that our human rights are being denied when there is such a huge difference between countries in what's considered a 'normal' range.

[Clutter]

Welcome to the forum, Telbel6.

What is the FT4 range (the figures in brackets after the result)?

It's highly unlikely NHS will recompense you for cross border consultations and prescriptions obtained to get a diagnosis from a country with more favourable guidelines than the UK's BTA guidelines.  Your own GP can trial you on Levothyroxine if it's felt that low thyroid is causing your symptoms despite levels being within range, but not many GPs are prepared to make a diagnosis outside of guidelines.

thyroiduk.org.uk/tuk/diagno...

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

Email [e-mail] for a list of member recommended endocrinologists.  Some private endos do make a diagnosis when TSH is >3.  Diagnosis from a private endo doesn't entitle you to NHS prescriptions however.

[Clutter in reply to Clutter]

ps, Ask your GP to test ferritin, vitamin D, B12 and folate.  Low/deficient levels are common when patients are/becoming hypothyroid. Swollen scalloped tongue is a common B12 deficiency symptom.

b12d.org/b12-signs-symptoms...

[telbel6 in reply to Clutter]

Hi Clutter, thanks for the welcome. So nice to know I'm not alone. Unfortunately I didn't write down the FT4 range, but I can ring the clinic and get the full result. That test was done at a specialist menopause clinic and while my consultant there is very sympathetic to all my other unpleasant symptoms, on the thyroid question she was adamant that I'm 'very normal'. The earlier tests were done through my former GP, who wouldn't test for anything other than TSH as she said it was 'all that is needed'. Very reluctantly they agreed to test me one time for TPO as my mother has Hashimoto's - that was done three years ago and came back as 33. My current GP is very good so I'm seeing her soon to raise the issue again.

[shaws]

Welcome to our forum telbel16

It is not uncommon, nowadays, to be dismissed because your TSH hasn't reached the magic number of 10 - as they are instructed by the British Thyroid Association. I doubt any of them have had a problem with their thyroid gland and we might fare better if there was a few with the disease on the panel. 

The UK is the only country in the world, that I know of, whose only priority is the point where the TSH lands. All clinical symptoms are ignored and also the majority of doctors are unaware of a few of them anyway (around 300+). This is from Thryoiduk.org.uk website:-

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

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

If you've got such severe problems it's time someone knowledgeable can prescribe so you can get some relief.

[Amandajl]

Hello telbel16 

There are some good Endos in the uk, sadly you have to shop around. I've seen 10 in the last 4 years, my currant Endo is lovely and very understanding. His is prepared to listen and not phobb you off and more portably give you the meds you need.  It's then down to your own GP surgery if you get prescribed them.

I asked to be prescribed T3 by my local endoknob and they refused point blank, and told me I could get it on the Internet and self medicate!!!! 

I wrote to my local MP and asked if I self medicate will I be struck off my GP surgery or if I get a private a pit will I be struck of my GP surgery..... Am still waiting for a reply.

What am trying to say is, there are Endo 's that will help its just finding them without going outside the Uk 

[Howard39 in reply to Amandajl]

A friend is and Endo as a v kind person but even she recommends T3 is bought privately on the internet. She will give a private prescription but at a cost of £192 wholesale per month for 30 x 20mg tablets (at the chemist- just jumped from £20 per month as there is only one supplier) is aware no one in their right mind would pay that.

Also the reason some GP's will not give it- cost. I have asked around at my local pharmacies and some one slipped my a piece of paper of a GP who does prescribe it. It is rather like getting into a secret club!

[telbel6 in reply to Howard39]

thanks Howard, that gives me an idea. My local chemist is absolutely lovely and has always given great advice on supplements and HRT. I'll ask him for a chat on thyroid meds and see if he knows who is willing to prescribe.

[telbel6 in reply to Amandajl]

If I self-medicate should I jump straight in with T3? A close friend lives in Athens - I could spend a few days there, pick up some T3 supplies and a bit of sun at the same time! Mind you, I've never had a T3 test so have no idea what medication I should have. Mum takes Levothyroxine and is happy with it - what makes me hesitate before self-medicating on T3 is knowing that may be all I need.

[Patty5110]

Wow, your story could be mine. I'm further along in getting treatment, but it's been a long road. I'm in California. I have hashimotos with nodules. Lots of assumptions including sleep apnea. 

I sleep with a mouth appliance because I couldn't tolerate the CPAP, but I got treatment after I totaled my car after falling asleep at the wheel. 

Long story short, I am meeting with a surgeon in a couple weeks to discuss treatment. 

Your labs are too high, especially if you have nodules which is a possibility. Believe me, it's taken three years and two different insurance plans to finally find the right doctors and get help. You've got to see an endocrinologist. They will understand your labs and your symptoms. 

Good luck! 

Patty

[telbel6 in reply to Patty5110]

Thanks Patty, I'm going to ask my GP about the lump in my throat. It's driving me crazy and I when I lay down in bed I can feel my fat tongue pressing down on it. Surely the stubborn UK doctors can't deny treatment of a lump on my thyroid, even if my test results don't meet their ridiculous criteria. Fingers crossed.

[Clutter in reply to telbel6]

Telbel6,

Ask your GP to palpate your throat and neck.  If a palpable lump is felt she should order an ultrasound scan to examine your thyroid gland.

Thyroid nodules are very common but if a large nodule is compressing your trachea it may need removing and large nodules should be checked to make sure they aren't malignant.

If you intend to self medicate it may be better to start on Levothyroxine which is also available OTC in Greece.

________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Treepie in reply to Patty5110]

I had similar symptoms ,mega snoring and sleep apnoea ,struggling to stay awake at the wheel,had mouth appliance which pulled lower jaw forward.It worked ,but stopped using once on levothyroxine as those symptoms went straight away unlike other symptoms.

[telbel6 in reply to Treepie]

Hi Treepie, my sleep doctor has recommended a mouth appliance as I can't use CPAP (honestly I don't know how anyone can use that medieval instrument of torture - it belongs in Guantanamo Bay). As the NHS mouth device is 'rubbish' - to use the exact words of the ENT consultant - he's advised me to go private at a cost of £1,500. Since I'm already facing a hefty bill for private endo treatment if my GP refuses to give me levothyroxine, I'm wondering whether it would be worth paying for something I would end up throwing away once the thyroid meds kick in. How long did it take for your sleep apnoea to subside once you started on levothyroxine? I'm also on an aggressive weight loss plan but I've got so many pounds to shed that  I will need something to let me sleep before the fat miraculously drops off LOL :o)

[Treepie in reply to telbel6]

Check out S4S dental.com based in Sheffield.I tried their diy mould without success something to do with having an odd jaw!

So i went to local dentist on their list who made the mould although i still finished up visiting the lab to get it right.A good service and two years ago was around £300.The £1500 chrome one they said was for rich southerners !The disadvantage with it is if something changes with your teeth you cannot change the appliance .

The lab gives a good service.

As i kept wearing the appliance for a while after starting levo( i had no idea that being hypo was a cause) I am not sure how long it was before i stopped .Probably a few weeks.I cannot say it is comfortable in the mouth but it was quite effective- my ban to a spare bedroom was rescinded!

Of course there are other causes of loud snoring and sleep apnoea.

[Patty5110]

That should be symptoms, not assumptions in the previous post. 

[Helenireland]

Hi there is a great doctor in dublin Ireland . It's Drummartin clinic . I was to the point of struggling to walk and stay awake 5 hours . I'm flying it now still not 100 percent but I don't think it will happen since it took me 18 years to get treatment !! 

[SlowDragon Administrator]

Suggest you get a full set of thyroid blood tests privately 

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

Blue Horizon. - their "Thyroid plus ten" test  is good place to start 

Plus important to check Vit D3 level too - can get done via City Assay

[Bluemaxx]

Hi - my TSH level was 6.32 and the doctor didn't want to take any further action until I said that I was trying to conceive and was considering IVF (I'm post menopausal and 53!). According to the NICE guidelines your TSH level should be between 1 & 2 so she changed her tune and referred me to an endo. So worth a try!!!

[telbel6]

I've just had a set done at Chelsea & Westminster Hospital menopause clinic, although I don't know whether they included T3. I'll find out more when I get the results, probably later this week.

[telbel6]

An update. I've just had results back from blood tests done last week at the menopause clinic at Chelsea and Westminster. I don't know what to think - am I going mad? My TSH was 1.94 and Free T4 was 15.2, range of 9-24 pmol/L. The tests were done in the early afternoon - I know that's when your TSH levels are supposed to be at their lowest, but this seems crazy. I saw my GP in the morning, before the test results were back. She agreed to refer me to an NHS endocrinologist, but I know he or she will take one look at these results and say I'm imaging things.

I'm thinking now my only option is to go private and get all the tests, including T3 - and pay myself for prescriptions. Does anyone have any thoughts on Dr Bernard Willis? If so PM me.

I can't get my head around this result - not only because I'm in a permanent fog of sleep deprivation. My last result was TSH of 4. Has anyone else had a result so different?

[telbel6]

Hi Sandy,

Yes please! All offers of help and information gratefully received. Many thanks, Terri