Where to start!

[ClaRit]

I'm a 20 year old female university student that's failing to get anywhere with the university clinic for my thyroid issues and need some advice of what to do please. I'm in Surrey.

I'm hypothyroid as I have Hashimotos. Prior to moving back to the UK, I lived overseas with my parents where my thyroid problem was first picked up two years ago. I was under an endocrinologist who put me on 100 mg Levothyroxine and 25 mgs Cytomel (T3 was none existent). I was feeling fine up to three months ago when I just crashed.. extreme exhaustion, highly stressed, depression, severe bloating, feeling of "heaviness" and weight gain (despite low carb, gluten free diet) and often out of breath or find it hard or painful to inhale. After being fobbed off three times by the nurse in the uni clinic, I finally got in to see the GP who agreed to test my blood and my results were as follows:

TSH <0.01 mIU/L (reference I was told was 0.3-3.0)

Serum free triiodothyronine 6.7 pmol/L

Serum free T4 14.2 pmol/L

(March 2014)

The doctor rushed me through the results, muttering about TSH being low but nothing else. My Cytomel is about to run out shortly and she laughed when I asked if I could get Cytomel in the UK. Can I?? I walked out more confused than when I walked in. I'm so scared of failing my forthcoming exams because I just don't feel right. I have no idea how I go about asking to see a more understanding GP. How do I ask the uni clinic to refer me on to someone? I'd love to try NDT but do I need to go to a particular doctor for this?

(Oh I also have PCOS (progestorone almost zero) and I have gluten antibodies so can't eat gluten.

I eat healthily, no refined carbs or gluten substitutes, limited sugar and occasional dairy. Hardly eat processed foods.

I just want to feel well again. Life in your 20s is supposed to be fun and its anything but at the moment so any advice will be much appreciated.

Thank you.

[ROMM53]

Hi.

You can get T3 or Liothyronine as it's called in the UK, prescribed on the NHS but it's not straightforward in many cases. A lot of hypo pts have had to go down the GP referral route to a private endocrinologist (+preferably one that also works in an NHS hospital + that you have researched on this forum, is prepared to prescribe T3).

Then, (with a bit of luck ) your private endocrinologist will write to GP and recommend they prescribe T3, otherwise you are stuck with a lifetime of getting it on private prescription.

T3 is really expensive, as others have said, £130 per month, so understandable reluctance by GPs to prescribe as first line treatment. £130 comes out of the GP practice budget. Levothyroxine is extremely cheap approx £1 for a month's supply.

As you have had had T3 before,in Cytomel format, albeit prescribed abroad, maybe you will stand a greater chance of being prescribed it without all the above palaver?

Maybe you need to be a little creative with your medical history, for example when you were first diagnosed, were you initially just on thyroxine...felt dreadful, abroad GP added in T3, much improved......do you see where I'm going with this? Is there any need to tell your current GP that you were on the T3/T4 combo from the off?

You will have to stick to your guns, be prepared to move to another GP, be extremely persistent and ask for a hospital endocrine referral if necessary. Easier said than done when you feel awful. Good luck

[helvella Administrator Thyroid UK in reply to ROMM53]

Liothyronine is a very widely used term around the world, not only the UK - sometimes spelled slightly differently or in a different script! It became the name for T3 as a medicine - whereas T3 as a substance in the blood, is usually triiodothyronine.

For example, in Greek it is λειοθυρονίνη

[TupennyRush]

So sorry that you're feeling so rough. You can change GPs and it's what I had to do to get diagnosed. I asked everyone I knew in the local area who their GP was, what they thought of him/her and whether they'd recommend them. I have, let's say, an acquaintance who has a rather challenging personality and numerous health issues; she strongly recommended her GP and I thought that if the poor bloke could make her happy then he'd do for me.

Swapping's not quick. Despite the fact that we live in the age of computers doctors appear to only be able to send over paper records using a postal service that can only move around 10 foot per day. My records took nearly 8 weeks to travel less than 1/2 a mile. At one point I offered to go in, get them and walk the 10 mins between the surgeries.

Alternatively you can to to an endo privately; it's not cheap (two appointments, 2 lots of blood tests etc has cost me around £800) but providing you get the right endo you should get somewhere with them. I can recommend an endo in London if you DM me. BTW I have seen an NHS endo and she wasn't sympathetic at all but this was after I'd seen the private one and she was so in awe of his reputation that she just agreed with him (after telling me initially that I'm not hypo....)