Why is no one listening t3

Just been told by gp that they cannot prescribe t3 have to see endo which isn't till August

Have only been ill for 6 plus years worse after ablation of thyroid 2011 and now on 300 mcg of levothyroxine and still bed by 7 can't walk the dog hair falling out TED pretibial myxedema financially screwed and she tells me my last blood results are normal

My life has been hell marriage on the rocks and I don't think I can take this anymore

Need to ring endo tomorrow but I know she won't listen

What's another 4 months when your life isn't worth living anyway

35 Replies

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  • So sorry you feel so bad, I had a total thyroidectomy for graves' and it has been a rollercoaster for the last 7 years, before that for 23 years I was better treated, but I accepted less than optimal treatment because I thought it was as good as it got. Since then it's got much worse! If you are on 300 levo it sounds as if you really should be allowed to try T3.

    There are others on this forum who feel like you, some of us have made a difficult decision to self-medicate because of the lack of support. One thing you can be sure of, though, that people on here really want to support you and encourage you to get through it, and to find a way to get the treatment you need. I do hope that you will take comfort from the fact that we can truthfully say we do understand your despair and would do anything possible to help.

    Marie XXX

  • Marie thank u

    I am taking great comfort from this amazing site especially to be in contact with people who do listen and know where u re coming from xx

    Not so sure Bout all of us being so let down though it so messes with your life and your family doesn't it xxxx

    I'm sorry you to are so poorly and thank u soooooooo much for listening

    Take care

    Julia x

  • Julia,

    It sounds like you have hit a wall- could you change GP or see a specialist (or different one)?

    Talking about will help a bit. I wish I could help more, you sound sooo fed up.x

  • Couldn't agree more. Julia - I have posted to your other question about two weeks of T3. Xx

  • Thank u xxxxxxxxx

  • Hi, I feel your pain, it is crap I know. And yes it is hard on all your family. I agree you should try and see another GP if possible. I have no thyroid, and right now I feel dreadful, and nobody (apart from the people on here) seem to understand. I hope you feel better really soon, keep strong x

  • Thank u

    I too have no thyroid function

    It doesn't make any sense when this happens and no information is given

    " take this pill 50mcg and you will feel better "

    Rubbish 300 mcg and 3 years on lost years and still no where

    Thank you for your reply

    We all must keep strong I want to give people positive coz that's usually me sorry I can't help more

    Take care

    Julia xxxx

  • I am on 100 Levo and they keep telling me I am within range, why is it then we feel like poo???? I had a thyroidectomy followed by RAI, do you have stages where you feel pretty good? Keep in touch x

  • Yes I do and think I could take on anything and then try to resume normal life and hit a wall!!!!!! A great big wide high metal one and I think to myself on these rare occasions I must remember these days a bike ride a dog walk a laugh we had nothing spectacular but are to us xxxxx

    I have learned that ranges are for them not us

    I am still very confused by this

    Some days I cannot speak properly and have become a hermit even to very close dear friends who are amazing I have lost friends coz they don't understand and neither do I x

    This site has given me so much hope and made me realise I'm not crazy coz I was worried there for a moment xxxxx

    I will try to send u link I got from admin on this site regarding RAI

    I'm not a great tech person

    I have had loads of great help

    If you have a question ask it on here there is always some one that can point you in the right direction give u things to read and make you believe things will get better xxxxxxxx

  • Thank you so much for your kind words, nice to know someone else understands xxx

  • Xxxxx

  • Please go on facebook where there are a lot of support groups, "Starting LND" or "Beating thyroid disease"

  • Thank u I will xxx

  • There is also a great one on FB called Thyroid Friends and we really are having some great giggles and forgetting our troubles sometimes. We try not to duplicate what is on here because the people on here give lots of very useful and helpful advice, and it is well mediated and overseen which is important.

    But on Thyroid Friends on Facebook we simply chat, have a moan, have a laugh, and keep in touch even if it's a 'good morning' or a 'goodnight' and nothing more. A lot of the people on FB are also on here. Highly recommended.

    But don't forget Thyroid UK support because the information and advice on here is always backed by evidence, and they are the ones working in high places to make things better for us.

    See you on FB? We've already started our 'good morning' thread for today.

    Marie XX

  • Yes I follow thyroid uk on there

    I will join these others today

    Thank you

    Every one xxxx

  • Low dose Naltrexone is supposed to rebalance your immune system and diminish your antibodies if you have hashimoto or graves. Anyway see their website, very hopeful treatment.

  • Thank u xxxxx

  • Please be kind to yourself and get a new doctor. You deserve it.

  • Hi all

    newly diagnosed.. under active thyroid,just saw something in that post about turning into a hermit and realized that that's what i have done.Is this to do with the thyroid..i just thought i was going crazy.Any information gratefully received

    Regards.

  • Bless u

    It's really the fatigue that causes that for me

    It can last a while and I just don't have the energy to do most daily chores let alone meeting for a coffee with friends - even speaking to friends on the phone is hard when that tired atleast most of my close friends do understand and good job for texting

    The problem with this is when I have an appointment at the hospital or gp and in this state I can't string a sentence together so go round in circles and can't explain stuff

    I fell asleep in a packed waiting room waiting for blood tests last week hope I didn't snore or dribble!!!!!!!!!

    I have to force myself out and also when you have been like it for 3 years it gets very lonely

  • Hi

    I'm afraid that your doctor is not telling you the truth. Your doctor CAN prescribe T3. it is in the British National Formulary which is list of approved drugs. it maybe that he just doesn't want to.

    if he tells you that the Clinical Commissioning Group has a policy not to prescribe T3 then that is unlawful. The courts have said that each case has to be decided on it own merits

    if this happened to me I would tell the doctor that he has duty to work in partnership with me and that I want to trial T3. I would give him all the evidence (some may be available on another site) and tell him that he has a duty to use the best available evidence. He also has a duty to give you the information you need for you to make decisions about your health care in a format you need - in other words, he has to tell why he doesn't want to give you T3. if your evidence is better than his you should get your T3.

  • Fab thank you

    Was told to ring the endo today as they can only give the go ahead

    They are sooo busy I don't think I will get to speak to her

    I can't go on till August like this

    Thank you everyone

    Xxxxxxxxxxxxxxxxx

  • So I have ring to speak to my endos secretary who is normally amazing but she is on holiday and the lady on the phone asks why and who is it

    I'm her patient and need to discuss my blood tests and medication as I can't wait 4 months to see her

    She might be in I don't know came the reply shes not officially meant to be here but will be popping in I don't know if she will call u back so call back next week

    Well I thought this would be the answer lets hope I feel well enough to carry this goose chase on on Monday

    Any way it's the weekend yey but our thyroids don't know that do they xxxxxxxx

  • Natural desiccated thyroid would probably be best for you. Some endos will prescribe.

  • Thank you xxx

    I have emailed her today now

    Fingures crossed she didn't read my last letter though

    Keep smiling xxxxxxxx

  • It's interesting that the medicos refuse one scrips (mine refused me t3 too), when every week more and more of this kind of medicine is available - without a scrip - from Amazon. I've been trying Bitiron which I bought from there. Also tabs for Adrenal exhaustion, various (not sure I've found anything that really helps in that area yet). Before that I tried NDT. Also get my B12 tabs from there - much cheaper than the pharmacy. Indeed, although I'm on a low income it is possible for me to buy these medicines on my teeny weeny budget. None of this stuff is expensive.

  • Hi I've posted recently about my GP refusing T3. I've come across a website chemistdirect.co.uk who are advertising T3 for sale. (with a prescription) Anyone else have any info about this? I will be asking my GP for a prescription I am willing to pay if I can buy them from this website. Wishing everyone a good week-end :-)) Jeannie x

  • Thank you

    I have never heard this before

    Take care

    Julia xxxxx

  • Me either -the price is ridiculously low (I have always been suspicious about the 'no, it's not because they are too expensive' -GP on why I'm not prescribing) but with the price this website are charging then that can't possibly make sense. I'm really at a loss as to why there is such an issue around giving T3 to those who clearly benefit from being on it - thyroid paranoia going into overdrive!!!!! please keep posting any developments Hope you feel better Xxx

  • Hi Julia Well quick update I've just gone on the website again and now there is no sign of T3!! I have 2 e-mails from them giving me order numbers neither of which are being recognised when I try to trace the order!! Oh dear 'if it sounds too good to be true etc etc......... Very odd they took the order and now don't have a record of it as per their e-mails. Back to the drawing board Jeannie x

  • I just had a look and it seems to be there. The price is £2.50 per tablet, which is very high, but if you have an NHS prescription and a medical exemption card it looks like it could be free.

  • Hi Zabby that's exactly what I 'ordered' on Wednesday. I wonder if you order - as I did - with my exemption if you get sent a confirmation e-mail and order number. When I've logged on today the order now doesn't exist Thanks for checking at least - I didn't imagine it! Jeannie

  • I've been through a lot, as I was diagnosed with ME/CFS ad suffered a persistent annual decline, to the point of being in horrible pain and virtually bedridden. I've had appointments that have been a waste of time, sent to inappropriate clinics, given poor advice, you name it... I have to say, exchanging GP and changing specialist was the best thing I did. I'm currently the best I've been in 7 years. That said, I'm not a well person and I still wonder how well I'll ever get.

    Seriously hang in there. I no longer take anything on face value, and so go to many lengths, including pay to see a private doctor in a different city. But with appropriate medical advice and tablets, improvements are possible.

  • Sorry to hear you feel like that, it's bloody horrible this hypo, not been as bad myself but have felt like I had no life left in me at times.

    I wish you all the best xx

  • Thread edited by Admin due to advertising

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