UK Doctors find T3 unconventional ?

[Addi]

Hello there,

I am having more and more trouble getting a doctor to look at my symptoms of hashi's rather than the lab results. I ditched my old GP when she told me to just live with the problems as there is nothing else she can do other than giving me the usual dose of medication.

I have since gone on holiday back to Germany and in august got a prescription of T3 and and T4 from a thyroid specialist but I am running low now...I signed up to a different UK doctor and they tell me that T3 is too expensive for just one patient to be viable unless I really really really I-am-dying-without-it kind if need they will not give it to me even though I feel a lot better.

They wont test me for everything but TSH and T4 and I am running out of options as they will also not refer me to an Endocrinologist. Does anyone have any idea what I have to do in the UK to get a referral and/or the medication to make me feel better?

[Hennerton]

Go privately, I am afraid. It is the only way if all other routes have failed. It is amazing how much more pleasant the conversation is when one is paying to have it. Still not brilliant mind - but better and at least I got my first T3 prescription. I paid for this one and then amazingly my GP took over on a repeat prescription. I think they will refer you to an Endo if you are paying and not all need a referral anyway. It is probably better, however, to involve your GP, so they may pick up the prescription like mine have, if the endo agrees that you need it. Louise Warvill has a list of good Endos. I am sorry if this goes against the general attitude that the NHS should be totally responsible for our care. I agree it should but if it is not happening and you feel unwell, this is the way to go.

[Addi in reply to Hennerton]

thank you - It is weird but since I signed up with my new GP they still havent got my records and therefore refuse to prescribe me anything ( it has been 3 weeks) I am running low on medication and lucky (for lack of a better word) i have a month of just T4 at home but I would rather not mess around without a professional opinion - although it doesnt make much difference now it seems....

I am with Bupa but unsure of the costs of a T3 prescription - I find it sad that I am being judged by a lab test that shows what an average normal person feels like without looking at other factors.

Maybe it is worth looking private i guess I am just worried about the costs...

thank you very much for the reply

[pennyrose in reply to Addi]

Hey Addi

I'm lucky and was prescribed T3 and have a repeat prescription on the NHS. When I fist ordered it with Boots Pharmacy they said the cost was £103!! So I believe it will be about that much.

You definitely need to push for a full panel because maybe fT3 isn't an issue (it maybe is!) but get all your key vitamins tested also x

[Addi in reply to pennyrose]

yeah getting the whole test is difficult as my doctors dont deem it relevant. They test T4 and TSH and thats it....sometimes if im lucky antibodys but nothing more - it works so different in the UK. :S

[Hennerton in reply to Addi]

Are you sure your new GP practice is worth your "custom", if they cannot be bothered to help you and/ or chase up your records? Are there any others you could try - seems to me they will be unhelpful about everything.

[Addi in reply to Hennerton]

well there arent many in the area and i looked them up by review - the reception is friendly and they have a few doctors...maybe i need to try them ....its tedious...none of the practices on the sheet are anywhere near me....and i would love a referral to an endo but they say he wouldnt see me due to my TSH being 2.8 so for them all is normal....

in germany i felt best in the range of 1-2 but here i never got that low again. It sticks between 3.8 and 2.8 its frustrating....

[Hennerton in reply to Addi]

No wonder you feel ill. You TSH is too high and you definitely need more of either T4 or T3. Until you have a T3 test you will not know. What doses are you on of each?

If you see an Endo privately, your TSH will not matter so much and if you can show your T3 is below range,( like I did), you will have a better chance of it being prescribed.

I do wonder if you just need more T4 at the moment to bring down your TSH and that may well increase your T3. When my T3 was below range, my T4 was above range and TSH was low, meaning that I was not converting properly, whereas that does not seem to be the case with you.

[Addi in reply to Hennerton]

Well I was wondering about that - but all the doctors so far said that I am within range --- Before I went back home to my old doctor I was on 125 Levo only for like 3 years - but i kept feeling better and worse...when it hit a low and i said that i am really sleepy and my digestion and skin are bad she only said that i had to live with it and on the bright side i could be dead....which is when i changed docs because I felt she didnt bother.

She said with a range of 2.8 an endo would not see me....im worried that here I will not get the help i did like back home.

Sometimes I got T3 with T4 and sometimes just t4 back home depending on my levels. I had tests every 3-4 months and an ultrasound every year as my thyroid just shrinks and shrinks...

So far my doctors ( 6- years in the UK) have only given me one ultrasound to determine that indeed i have hashis...thats it...and all she did was give me 125 dose of T4 no changes...

can i request an endo or can i request a certain test done? I feel that im talking to a brick wall with the GPs here...

[Hidden in reply to Addi]

Just read this post my levels were perfectly normal and I camped out in my doctors every week for two months until they refered me. My suggestion was that I still felt ill and I would pay for the appointment I just needed a letter, or in some cases a phone number for the endo's secretary. You could ring Bupa and find out how much it would cost. Go above you doctor if they are not helpful or take a witness into the appointment who can insist with you that all is not well.

[Hidden in reply to Addi]

I too am with Bupa through my work and my endo was more than willing to prescribe t3 based on theraputic standpoint (not looking at blood tests) He wanted me to buy it through him at £50.00 per month. However I asked him to write the letter with his recommendation to my GP and then we would take it from there. MY gp is now giving me t3 and t4 and i feel a little better, going for blood testing this am. Anyway worth the hassle the get the prescription. It is keeping hold of it now that matters. Bupa now though once diagnoised and receiving treatment will not cover me for further follow up appointments. Just so you are aware they do have clauses about hypothyroidism it is worth finding out how much treatment you are covered for so that you can make the most of it. As mine is a work policy it only covers the basics.

[waveylines]

Do you have any correspondence from the thyroid specialsit you saw? If not could you contact them and ask for a letter. You could then submit to your GP as evidence of diagnosis and needs. I would write a brief letter to accompany it to the surgery practice manager with your diagnosis, medical needs and asking for them to set up a prescription for you. Explain that leveothyroxine for you on its own was insufficient and left you ill. Stress your health needs -they won't want to feel they are responsible for compromising your health and putting things in writing can help sometimes help to move matters on.

[Addi in reply to waveylines]

the Specialist I saw in germany doesnt speak english - which is the problem - im sure he would give me a letter regarding this matter but what good will it do if the letter cannot be translated?

The thing is that I could go back to germany and get treated but that would cost the NHS more since I have the EHIC card and for me to fly over there is also then a costly thing....I wish there was a network of docs around that have experience in this so i knew where to go to...

Does it cost the NHS too much to do bloodtests out of the "normal" boundaries or why ar GPs so reluctant to try? It is all so different here.

[belwom]

Abbi -Could you translate a letter from your specialist in Germany into English yourself and have the translation certified at the German Embassy in London or consulate if you're based elsewhere in the UK? Embassies charge a fee for this but it is cheaper than having it translated by an agency or translator (I'm actually speaking against my own profession but am trying to help).