Endo phone call today!

Hi there I had a call today from Endo to advice short synthacen test was normal. Asked for actual number of Cortisol reading which was 536 so this appears correct. Endo asked how I am feeling and I said awful and that now I have loud tinnitus continually in both ears and hearing diminished. I said to her that my Levo has been discontinued By her and it was helping me a lot . I said to her my Tsh was 4.24 (0.3-6) when renal doctor put me on Levo . Asked at what level of TSH would you recommend a Levo to which she replied 10?!? APPALLING!! Hugs xx

19 Replies

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  • Dreamer12,

    I wonder why she would ignore the top of TSH range being 6.0? Apart from being some sort of sadist, of course.

  • Hi Clutter hope you are well..., Exactly I thought she was heartless saying 10!! I know what 4.24 felt like. Two months of Levo has taken away my breathlessness for the first time in almost two years... no inhalors last few months fantastic. A long way to go with loads of other symptoms but gives me hope. New bloods taken today .. will increase Levo to 75mg if required...as feet and hands wonky. Thanks xx

  • That's the 'official' level beyond which they diagnose you w uat. Why were you taken off levo if your renal specialist prescribed it for you?

  • Hi puncturedbicycle

    Taken off Levo as an Endocrinologist is the "expert" her words.... not a Renal Consultant treating my CKD. She "wouldn't tell a Renal Consultant how to treat his patients". Got my own Levo now . His upper limit is 2.5 for TSH .... very different to the "experts" of course I can't admit to GP to having my own Levo. Thanks x

  • Is it possible to contact the renal specialist? I'm surprised to hear a doctor changing what another doctor has arranged without consultation. Surely the renal consultant had their own reasons for treating at that level. The usual way of dealing w this sort of thing is for one of the doctors to write the other so they can understand their reasons and coordinate treatment.

    It isn't really all about expertise in a discrete field. A fertility specialist for example might have their own reasons for treating sub-optimal thyroid function aside from what an endo would deal with and their own expertise (with their own area and where the two subjects intersect) must be respected.

    Has the levo come from an online source? I'd be very careful of using levo bought without a script.

  • Hi puncturedbicycle

    Thanks for reply.. I have been in touch with Renal doc's secretary a few times RE this conflict about the Levothyroxine prescription. Last message was... doctor is not able to get involved now as there are multiple consultants treating me and it can get very confusing. I see him again in Feb/17. When my old GP got an email from Endo saying DO NOT TREAT this patient, the renal doc was kind enough to provide a clinical letter with all results which showed hypo... rise in BP, cholesterol etc and my new surgery prescribed some weeks later. Within 5 days the fluid in my ankles had gone. X

  • Yes, I agree it may get confusing. What is the endo doing in the mix? Do you have further thyroid issues besides subclinical ht or is there a need for the endo? They rarely do anyone any good when it comes to straightforward hypo treatment and really anyone can treat w levo and/or t3. So I was thinking if you're going to cut back on the number of docs involved maybe it should be endo not renal.

  • Puncturedbicycle.. thanks that's a good point .. what happened was.. my old GP in his wisdom emailed his Endo "colleague" as my TSH was "normal" (not ) and Ft4 was 7.9 and they were concerned about my pituatary although I had over 50 symptoms of underactive Thyroid and posted the Tuk checklist with those ticked off...!x

  • I'm sorry your doctor is another who is incapable of treating patients and it is due to the awful guidelines the BTA and RCoP state that we cannot be prescribed until the TSH is 10. In other countries if TSH is around 3 patients get a prescription.

    Tinnitius is a clinical symptom of hypothyroidism and if we stop replacement thyroid hormones we may develop other more serious illnesses. That's why hypothyroid patients have to take life-long hormones.

    thyroiduk.org.uk/tuk/about_...

    Tick off your synotins and go back to the GP. The Endo isn't much good nor knowledgable.

    Ask for a new blood test as you know (and tick off symptoms) you are hypothyroid.

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

    The test should be the very earliest possible and fasting (you can drink water). Also if you do/did take levothyroxine allow 24 hours between the last dose and the test and take afterwards. Ask GP for TSH, T4, T3, Free T4 and Free T3 and antibodies. If he wont or lab wont if the TSH, T4 are in range you can have a private test if you can afford it. You may have to look after your own health.

    Ask GP to do B12, Vit D, iron, ferritin and folate as we can have symptoms if these are deficient.

  • Hi Shaws.. yes I get the message now that I myself need to look after my Thyroid. Diagnose myself buy my own medication and arrange my own blood results. Great system the UK has in the NHS!!!!! At least pituatary and adrenals been checked - as you say!! Today I got a referral to Audiology Dept ... a million tests but nothing for Hypothyroidism. GOOD news is my breathlessness has abated for the first time in nearly 2 years!!! I had taken inhalors for 18 months but they did not work. Thanks very much for your advice. Tcare xx

  • Forgot to ask have you had your b12 tested? That's the only thing that dealt w my tinnitus.

  • H punctured yes!! I've been on jarrows Methyl b12 5000 Methy lozenges for 8 weeks so hopefully they will help. Last bloods in Oct was 300 (200-900) for B12 thank you x

  • Give it a few months and if no joy think about injecting. Really worked for me when I didn't see much change from oral supplements. x

  • Thanks did you inject yourself? As there is no way the surgery will deal with "in range" B12? xx

  • Yes. Oral b12 didn't help me. Could be because when I took it it didn't seem to do anything so I may have been erratic or maybe it wasn't enough b12 and/or it wasn't being absorbed well. Whenever I stop supplementing it drops dramatically. So after a year or so of self-injecting I had to think about it when my partner asked how my tinnitus was. I hadn't thought about it in ages.

  • Hi that's fantastic the b12 helped your tinnitus.. I've been referred to Audiology!! Is it easy to inject? Xx

  • Dead easy if you do subcutaneous. I'm not hard enough to do intramuscular. :-)

  • I'd give up on them and self-medicate as your renal specialist wanted - you can buy levo on the web - not just T3.

  • Hi angelofnorth

    Aww thanks you are right!! I see the renal consultant in Feb again. Hope you are doing well. Merry Christmas Jane xx 😀😀

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