Endo taking me off Levothyroxine!

Hi all.... I thought this may happen, but not so quick!! Been on Levo 50 mcg for 5 weeks and bloods were ugh better. But now the Endo has written to GP and just phoned and was very robotic. I don't want a second opinion as the GP was extremely fixed in his viewpoint. Tried to advocate for myself saying I had CKD and the renal consultant had prescribed Levo 50 mcg. he spoke to me as if I was a 5 year old about how he was sure he was very good at diagnosing renal problems bla bla bla....., I said to him I will need to buy my own medication then as I have over 50 symptoms of hypothyroidism to which he replied sternly " No you are going to listen to the endocrinologist and if you do not your TSH will be suppressed and cause damage to your heart and brain". This is a nightmare dealing with thyroid issues without medical assistance. Thanks for listening big hugs. Best wishes Jane xx

10 Replies

  • If hypo and they refuse to prescribe, they will cause you to have other serious problems.

    The are fixated on the TSH and that's why some scientists and doctors trained before the 60's have written about The Tyranny of the TSH. In the meantime there are countless people who are now very unwell and suffering unnecessarily so, and also developing other problems.

    Few doctors have had the wealth of experience in ill-health, neglect, and wrong medications that the members of this forum have.

    Lives ruined and so much struggling and no-one believes their crippling symptoms, particularly if mental problems occur.

    Have you had your B12, Vit D, iron, ferritin and folate checked. If not request a blood test and tell GP you want to exclude deficiencies that may be causing you problems.

    If you've had a recent blood test for your thyroid hormones, get a print-out and post for comments. I don't know if you can afford a private blood test from a laboratory and I'll give a link.


    I know two doctors who prescribed upon clinical symptoms alone and one in particular tried to 'educate' the Endocrinologists but they turned deaf ears and ignored him. He was assisting the 'left-overs' from the TSH system whom he treated according to symptoms.

    Unfortunately he is no longer with us.


    If we want to recover our health we have to do it ourselves, it would seem. At leat you have a bit more knowledge than before the Endo diagnosed you and then to change his mind.

  • Hi Elliot thank you for symptom chart very interesting.. yes I have those symptoms. I wonder about ankle reflux .. if they mean always turning over on ankle lfalling then that'd mex

  • Dreamer12,

    You don't have to take so much Levothyroxine that it suppresses TSH and there is no evidence that suppressing TSH causes heart or bone problems. Brain damage is a new one! My endo wants my TSH suppressed <0.1 and doesn't appear to be at all concerned about my heart, bones or brain.

    If you decide to self medicate and your doctors won't monitor your thyroid levels you can order Blue Horizon Thyroid Plus 6 to check TSH, FT4 and FT3. thyroiduk.org.uk/tuk/testin...

  • Dreamer12,

    NHS doesn't usually diagnose hypothyroidism until TSH is over range even if thyroid antibodies are positive.

  • Oh really thanks what a system !!

  • Your endo is a bullying fool, but you need to pursue your iron problem first.

  • Yes Aspmama... thanks you are right! The Endo secretary just phoned and they want me to go to hospital soon for a few hours for a "short sycranin test "(anything but thyroid lol).as I was on steroid inhalors for 2 years and it wasn't even asthma. Think it's related to Adrenal gland. I am now taking ferrous fumetate 210 mg twice day. (last 5 weeks)... theymake me feel ill but I can tolerate it. No wonder I have felt so ill and tired for two years!! I take B12 (5000) now also.Thanks for your reply. Don't think I willbithsr with gps much more. Thank you Jane xx

  • Just fyi, if you take the 'gentle iron' varieties (Terranova, Solgar and Jarrow all do them) it is a much nicer experience.

    As you're taking v high doses maybe it is an urgent matter for now, but if you want to take a break from the side effects or down the road when you just want to top up good levels I highly recommend it.

    I take two of the Terranova caps every night w 1000 vit c and I haven't had any issues at all (normally find iron very queasy-making). If my iron was worse than it is at the mo I'd prob do this twice a day.

    I've even started adding a b complex, which is my nausea achilles heel, and still no probs.

    Er, if your renal consultant (a fellow medical professional) is happy to prescribe why is everyone getting bent out of shape? I do wish they'd all be a bit more open to the expertise of others instead of guarding everything with so much bile. I *hate* hearing that someone was spoken to this way by a health professional. It is so crass, they must have no fear for how base they look.

  • Hi puncturedbike .. thanks for your reply. it was THE SURGERY who arranged the doctor to phone me for a 👍10 minute telephone appt as the GP was concerned (doubt it) that my cholesterol was high. So I was very surprised when he phoned and asked ME why I was calling. He didn't even mention cholesterol just went into TSH Normal mode no need for Levo.endo actually said to me at my appt.. she would not tell a renal specialist how to deal with renal issues when I said will you "supersede" his decision to prescribed thyroid meds.she said it would be UNETHICAL of her not to tell GP to stop meds. TSH was 4.24 (0.3-6) at that time and FT4 12.1 (9-24). Ferritin 10.1. Waiting on a CT OF LUNG RESULT AND TPO antibodies. Thanks and Tcare 😀😀

  • Ps thx for info on iron tablets will try one of them 😀

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