Info on how to influence decision on T3

Good Afternoon everyone, I am just after some advice please.

I was diagnosed underactive thyroid with high antibodies Aug 2015 after feeling unwell for a long time. I was recently upped to 75m levothyroxine as am still feeling rubbish, I did see an improvement in symptoms after the initial dose of 25mg, but as soon as I moved to 50mg I got really bad aches and pains, the headaches have returned and some days brain fog very bad. Blood tests showed my ovaries were packing up and that i was in premature menopause ( I was 47 then) and started me on hrt. Also my doctor prescribed Prozac for the pains which I didn't take, then gababenton which made no difference. After twoing and frowing, changing brands of levo from mercury pharma which I was fine on 25mg, then actavis 50mg which gave me an upset tummy, I then moved to wockhardt which seemed to be a lot gentler. Still no better my GP referred me to an endo through private healthcare at my work. Anyway the first meeting I could tell he wasn't particularly interested,but i insisted on giving him a printout of bloods, symptoms etc, he was dismissive about the different brands of levo having side effects, said they are all exactly the same, didn't think the fact that my gums had gone from being healthy to really unhealthy over a short period of time and i needed 4 crowns replacing was possibly related etc, previous bouts of vertigo, swollen lymph nodes etc. This one dimensional way of thinking immediately got my back up, as i know he was probably thinking I was a hypochondriac. He suggested upping the levo to 100 and having a synacthen short test for the adrenals which i had done , and see him in two weeks. I did this and the results came back "normal". At the follow up appointment Imentioned to him that when reading about synacthen test on the hospital blood test form, it actually said that HRT medication can have a bearing on the results, so he suggested coming off hrt and having the test repeated in 6 weeks. At this point they will test my TSH levels as well. I had to ask him to ensure the T3 test is included also so he scribbled this on the sheet, he said they don't use that to measure TSH levels. I had made my mind up to possibly stay with him to get these tests completed and then go to someone else for a second opinion. However, he did say that if I am still feeling as I do at the next visit, he will consider a trial of t3, but there is a lot of controversy in the NHS etc and the GP may not agree to fund it. I explained that I have no quality of life, I have to go to bed after the supermarket run and often have to work from home as I feel so rough. My reason for posting today is to ask for pointers in how to encourage him to allow this trial, and also how do I ask/get my GP to pay for it. If I have to I will pay for the trial dose, but I know its expensive and I wouldn't be able to do this on an ongoing basis. I have been contemplating going down the self medicating route but don't have the confidence or knowledge to do this . For info my t4 was at 4.65 prior to starting on levo, down to 2.2 at my last test in March, vit d result 77 range 50-150. vitamin B12 within range sorry don't have the results to hand, i believe it was at about 969.

Thank you for all the help and knowledge I've gleaned from this forum

Regards

moira

19 Replies

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  • I don't know why it is such an uphill struggle and we plead sometimes to no avail and all we are asking for are replacement thyroid hormones, not for a full plate of gold sovereigns.

    Stick with him and he might trial T3 but it is Mercury Pharma's exorbitant price for it (something like £29 per month to £999) which may not make patients happy but it will the BTA as it is an excuse not to prescribe for unwell patients. Considering that Cytomel (I believe) can be prescribed on a named-patient basis more cheaply but T3 by Mercury Pharma is the only one licenced.

    It's well seen the majority of doctors are male as I am sure they will be on T3 at the drop of a hormone if necessary. :)

    We are not all hormonal dragons but feel that way by the disregard of our clinical symptoms (of which they know nil). When we get the right dose and the right hormones for us we do feel much better but shouldn't be forced to source our own which many have had to do.

    Oh for the 'good old days' when doctors knew clinical symptoms, prescribed without blood tests on a trial basis, natural dessicated thyroid hormones.

    If you want to source your own hormones put up a new post and ask for a Private Message to be sent to you as nothing is to be posted on the open forum.

    hormonerestoration.com/Docs...

  • Thank you Shaws for taking the time to reply, I'm seeing my own GP on Friday as I need a prescription for Levo since the dose was upped, I don't know whether I should bring him up to date on the possibility of the t3 trial and see if he will agree it, he is the senior one at the practice , or maybe best to wait and see what happens at the Endo apt in 6 weeks time. That link is very informative, I will print of and bring with me, along with the pulse article 6 and my stop the thyroid madness book !

  • Oh dear :) another patient educating the Professionals.

    I think just wait and see what Endo says, you can never tell - miracles sometimes happen and GP has to take instruction from Endo.

  • Thank you that makes it clearer for me , I wasn't sure if the Endo would be instructing the GP or just suggesting it to him. I will bide my time , regards

    moira

  • Suggest you ask GP to also check levels of folate and ferratin. These, plus Vit D and B12 all need to at good (not just average) levels for thyroid hormones to work in our cells.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

    When you get results suggest you make a new post on here and members can offer advise on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

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

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later. Usual advice on this test, is to do early in morning, no food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after).

    As you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

  • Thank you Slowdragon for your advice :)

  • you won't have any luck getting the NHS to pay for T3, they have stopped the endos. from prescribing it. I am one of many looking at self funding.

  • Thanks Pamboz, I'm willing to pay for the trial myself if I have to, the Endo is private so am hoping he can help initially, and then if NHS are not willing to help me I will somehow fund the trial myself. I am a working mom and will find this difficult,all I know is that I can't continue the way that I am, feeling rubbish most of the time. If the trial is successful then I would just source it myself like many others on the board seem to have done, just want to do so under medical supervision.

  • mcooper,

    28 x 20mcg Mercury Pharma Liothyronine will cost £250+ privately. You can buy 100 x 25mcg T3 online without prescription for less than £20.

  • Is that safe? I mean, is the medication OK?

  • BirgitteG,

    It's as safe as the Mercury Pharma Liothyronine.

  • Thanks Clutter, I will see if I can managed to get it prescribed and if he gives me a private prescription or if my doctor refuses to fulfil it on nhs, I may get it online and save myself a fortune. thank you for your help

  • Thank you for answering. That gave me hope 😊

  • If he blows you off again, it's time for self-treatment. Reply if you want my suggestions on how to dose yourself.

  • The best way to encourage the doctor to allow a trial, is to treat yourself and then go back to him and tell him how well you feel. It is very, very hard to be aggressive with these idiot docs when you are hypothyroid. Hypothyroidism reduces your ability to think quickly and be assertive.

  • Don't I know it Eddie83. Really struggling - get my results in a week.

  • Thanks Eddie for your advice, the synacthen test is being repeated this wed, then I go back to see him two weeks later for the result. Am hoping he will allow the trial then. It is hard to be aggressive, especially when finding hard to think clearly. Thanks again, regards moira

  • Hi can I please ask what the synacthen test is?

  • Hi Greenfairy, its to test the adrenal glands .

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