Levothyroxine reinstated!!!!!

Hi everyone ... some good news at last!!!! I recently wrote to my Renal Consultant to outline the improvements that Levo 50 mcgs has made to my hypothyroidism, after his diagnosis in Oct/16. Blood tests were carried out to prove this improvement. I explained to him that the Endo phoned GP to stop my Levo as TSH "normal" . 4.24 (0.3-6) now 0.8 (0.3-6) ... the Renal doc is now recommending my Levo is reinstated ro preserve my kidney function. Part of his letter to me and GP states " unfortunately this issue of subclinucal hypothyroidism is controversial and some people prefer to wait until the person is grossly hypothyroid before giving any replacement" wow imagine him making that statement fantastic... soo pleased!! i also sent a similar letter to Endo with an attachment journal re ckd and the damage to kidneys re untreated hypo. also I quoted NICE guidelines re treatment for patients with EGFR below 60 etc etc. I quoted Thyroid Uk several times andhow I am being advised by them. Thank you to anyone who helped me. Big hugs Jane xxxxxx

26 Replies

  • Fantastic news, so pleased for you. And what a brave chap your renal doc is to criticise the endo who took you off thyroxine. We need more like him!

  • Hi Gingerbread

    Yes at last a doctor who CARES about patients. Shame on these endos denying people treatment. It has to change. Of course i still have a long way to recover but as I said to Renal doc to be able to BREATHE properly for the first time in 2 years has changed my life. Goodnight..hugs Jane xxxx

  • You will be very relieved by your Renal Doctor's input and you will definitely have a Happy Christmas and the only way is forward. It's about time good doctors put the others, who don't know any better than follow the guidelines, in their place as they've let patients suffer with continuing or additional clinical symptoms.

  • Hi Shaws ... I feel soo happy that my medication will be allowed again. i only sent the email to Renal doc a few days ago and he was good enough to reply quickly. I also advised him that 20 years on ppis have prevented me from absorbing vitamins etc. Doubt I would have had the confidence to fight he decision the Endo cruelly made... if it were not for this forum and yourself. Thank you kindly. Merry Christmas xxx

  • As the saying goes 'Education is Power' and we have HAD to educate ourselves in order to recover, despite the awful guidelines.

    Well done. Maybe you will be able to cure your gut after PPIs. This link may be helpful:. Excerpt-

    You'll also develop both tolerance and dependence on them, so you can't stop taking them without suffering repercussions. In fact, you should NEVER stop taking proton pump inhibitors cold turkey. You have to wean yourself off them gradually or else you might experience a severe rebound of your symptoms. Ideally, you'll want to get a lower dose than you're on now, and then gradually decrease your dose.


  • Hi Shaws thank you your interesting article on drinking water receded gut issues. Funnyily enough my Renal doc ends his letter today by saying "Drinking plenty of water is very important". Good news re ppis is that over the course of 6 weeks I have halved my Omeprazole from 40mg to 20mg. Last week I missed one day and this week two days. It can be difficult.. I take apple cider vinegar sometimes which takes the edge off LOW acid and now got HCL with pepsin for the ppi free days. Phew so much to learn. Goodnight Jane xxx

  • I found Betaine/pepsin really helpful and we don't realise when prescribed something which will be used long-term may make the problem worse. You will however have a happy Christmas and New Year.


  • Excellent news Dreamer12 :) Here's to a healthier 2017 for you.

  • Aw thank you SeasideSusie I am very relieved. When I think of the Endo saying "have you seen the mental health team?" And minimising my 50 symptoms. I will discharge myself from her tomorrow. Don't want to listen to her negativity in Feb next year. Shame on her. Thank you for all your advice on iron and B12 other essential vitamins and Liver!! 😀😀😀best wishes Jane 🎅🏻

  • Well done you! :D

    It's so sad why they always think it's in our heads -its their first port of call... - why? It's like we're just naughty children -making it all up?

    I can't help but wonder when did this happen... the 'them' & 'us' - yet we're all the same, wasn't us!

    Possibles - that will stop a lot of 'customers' coming back to annoy us...

    sort the wheat from the chaff...

    delay tactics... maybe they just don't know!

    just shows that we have to keep on & fight for our own health.. yet the poorly ones will not be able to...

    sorry rant over J :D

    not that I'm a tad sceptical or anything! Jane :D xx

  • Hi Spareribs

    Thank you... I think they these arrogant Endos are like robots the way they act., maybe they like the power I dont know!! If it wasn't for this forum I'd still be believing "everything's normal"!!! Never again!! What a big con!! Today I was told "cholesterol is normal" .. 7.1 (3.1-6.5). By surgery. How many people are put at risk with these "normal results". Tcare x

  • Your cholesterol is not any sort of risk. It is high because your TSHis high.

    Glad to hear you got your levo back. :)

  • Hi Greygoose.. thanks for your replymy TSH Is 0.8 (0.3-6) and this new cholesterol result is not good along with my high BP and CKD. My Renal doc has said he would like to "lower my elevated cholesterol by treating my sub-clinical hypithyroidism" and not by using statins because of the side effects of statins. Good night Jane xx

  • Well, it's good to know that he doesn't want to use statons. But high cholesterol just isn't the problem they make it out to be. It won't cause a stroke or a heart attack. It doesn't matter.

  • Ah yes I see what you mean.. I've been reading about that recently. Yes he seems very forward thinking. Thank you very much 😊

  • You're welcome. Merry Christmas. :)

  • Dreamer that's good news. I found out in my 30s I had CKD of low 50s GFR which has fluctuated to as low as 42. Since being on Levo and getting fit following my hemithyroidectomy last year last result was GFR 60 so it does make a huge difference!

    Would you mind me asking what your GFR has been to get referral to Renal Consultant as I've never had any follow up other than kidney scan? My GP is my least favourite human so I'm not holding high hopes.

    Awesome news for you. Keep drinking that water lol. Merry Christmas x

  • Nickinoo1

    That's brilliant you turned round your kidney function to EGFR 60 very interesting!! Great you got fit and it's helped so much. Would you consider changing GP as some appear better than others although when it comes to the thyroid they all seem quite closed about this topic but if you research kidneys / with thyroid issues you will find lots of interesting evidence that untreated hypothyroidism can affect the function of the kidneys.. I read recently that people with CKD have an 18 % higher risk of getting hypothyroidism than ushers. My kidneys recovered to EGFR 52 after stopping Meloxicam. Now I am coming off Omeprazole very slowly. Merry Christmas xx

  • That's great! I don't understand why any doc woul stop this if it helped you. It's one of the cheapest drugs on the market here.

  • Wonderful news, so pleased for you! Made me think about the late great Dr Skinner. He was in trouble for treating patients when he wasn't an Endocrinologist! Just shows that often more care and thought is given by those who don't carry the title! That says a lot!!!

  • It would make me laugh if it wasn't so stupid but the powers that be complain that T3 testing is so expensive yet they throw money away by doing the wrong things which turn out to be so expensive!

  • Well done!! Kudos, sweet Jane!! Hurrah!!! No... HURRAH!!!! (Yes, I'm shouting to the mountaintops for you!!) Kiss your Renal Doc... right now, he's "hope" personified!

  • Hi CSMithLadd

    Thank you so much for all advice given to me... I have been able to gain much confidence from Thyroid Uk and people like yourself. Yes the Renal doc only received my email a few days ago and he has already replied. Not surprisingly the Endo did not acknowledge her letter from me. not that I would go to her again ever!!!! It restores your faith in human beings when someone believes you. Hypothyroidism that is untreated is unbearable!!!! I still have lots of symptoms but being able to breathe properly is like a different world. This forum is helping so many people. I'm so grateful. Jane xxxx 🎁🎁😀

  • Hello Dreamer12,,,congrats to you and getting yourself heard,,,,and getting such a great response form a doctor,,,,,have a good safe time,,,,,ttfn from Karen.

  • I have been on 150mg of levothyroxine for over a year now I got a diagnosis of having profound and dangerous levels since then I have had no feed back from my GP no blood tests no help or advice just left on my medication i also have problems from when I had guillion barre syndrome so I am in constant pain, I know this medication is what's keeping me "active" but I can't help but wonder so reading all your stories is of great help....thank you.

  • Hi Daniel_gale

    Hope you are well.. thank you.. I have been reading lots of articles kindly put on by members. If you ask your doctor for new blood tests and put them on the Forum you will get lots of excellent help and advice from people here. I requested B12 and Ferritin from gp and both were very low and I was advised "everythings normal"...if get your vitamins tested and post on here you will get good advice and you will then be able to get your thyroid reviewed. It's not fair that people get left but as I learned we can be proactive in getting better ourselves. Keep posting and take care Jane xxx hugs xx

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