Asked Endo do clinical symptoms not matter???

Hi there... the Endo had my copy of THYROID UK checklist forwarded in from previous GP... when I saw her today. She said it was good to have this... but then proceeded to go into a big spiel and by showing me my normal results on her computer. I asked do you not have patients who have all the symptoms of hypo, but under 6 on TSH test... she did not answer. Showed her my missing third of eyebrow, no hair on legs , breathless, whole body sore etc.. 50 symptoms but she just looked blankly. I also said to her that one of her colleagues emailed my old GP and said NOT to prescribe me medication and as a result my prescription from my Renal doctor was delayed for weeks. I asked how an Endo who has never met me ... say I do not need treatment. No answer. Said I feel it's appalling I am not being helped. Xx

23 Replies

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  • i was started on medication with a tsh of 5.96 and i was really symptomatic - i didnt know that falling asleep at 7.30 wasn't classed as normal until i start meds and i realized i can stay up till 10-11

  • Hi leahcollett3 .. glad you got treatment that is helping .. yes the drowsiness is so severe with hypothyroidism. Did it take long for your Levo to kick in?? Hugs xx

  • Erm it took a couple of weeks but the first improvement was the tiredness that went away quite quickly. i still have really thin hair and i still struggle losing weight.. but if i try real hard it comes off slowly.. trouble is im finding it so hard at the minute to say no

  • Exhausted1234,

    Bottom line is some (too many) doctors rely completely on abnormal bloods before they will make a diagnosis and don't take symptoms into account at all. Diagnosing by numbers! It is underwhelming to suppose that having a TSH of 5.99 which is within range means symptoms are non-thyroidal but TSH 6.01 being over range means those same symptoms are due to low thyroid.

    Your renal specialist considered low thyroid was exacerbating your kidney complaint and that Levothyroxine might help. There should have been no need for him to have the approval of another specialist before prescribing you Levothyroxine.

    If your symptoms and kidney function have improved since starting Levothyroxine it doesn't take a genius to see that you did, and do, need Levothyroxine replacement.

  • Hi Clutter. The renal doctor has

    Now said it up to the Endo as there are multiple consultants involved .., too many cooks!! Such a pity after fighting to get tablets thanks good nite xx

  • Hi Clutter thank you ...! Yes exactly you would think a renal expert would be able to make this decision...but when I asked Endo if I will remain on Levo/ renal clinic protecting my kidneys and I have high cholesterol also/BP.. chronic kidney disease.. she simply relied " it would be unethical of her to NOT write and advise my new GP I do not need my new Levothyroxine medication!!! She also said she would not expect to deal with renal issues and meant that she is the thyroid "expert" would have the last say. Told her the renal physision/nephrologist stands by his diagnose and has sent me a copy of my clinical letter. Feel like crying!! Tonight I have a lung scan. Kind rgds Jane xx

  • Exhausted124,

    Endocrinologists are renowned for being rigidly uncompromising about Levothyroxine and/or T3 being prescribed for non-thyroidal illness. I'm afraid your nephrologist will have to take it up with your GP if he wants Levothyroxine prescribed as part of your kidney treatment.

  • Personally, I wonder if the lectures on medical ethics are the ones all medical students skip.

  • HB,

    Along with the 10-minute lecture about thyroid which they skip?

    It may be ethical for busybody endocrinologist to say Levothyroxine isn't required for Exhausted 124's thyroid but it isn't ethical for her to say that it shouldn't be prescribed by another specialist as part of her kidney treatment.

  • Oh, agreed!

  • Zulewski's clinical score classifies you as hypo if you have at least five (age <55 yr) or at least six (age >55 yr) of the twelve without an asterisk in this chart: drive.google.com/open?id=0B...

  • Hi eljii .. thank you for zulewski's chart .. yes I certainly do have almost all of those symptoms and I am 50.. but I cannot demand treatment if Endo states TSH must be over 6!! I'm on 50 mcg Levo and Endo will not write to my GP to say do not prescribe. X

  • Forgot to say: the 12 symptoms were selected because they show CELLULAR LEVEL effect of hormones. (And were specific enough)

  • Hi sorry for butting in but can U get GP to test your antibodies . My initial tosh was just above range and doc was loathe to treat . Said I was depressed . So had to wait for second lot of bloods weeks later that were worse . Still they were loathe but started treatment . Anyway reason I am saying is a while later a lab technician suggested antibody testing . And this proved I was Hashimoto thyroiditis and doc therefore was proved without doubt wrong to suggest it was just depression . I gained her apology .

  • Hi popppy.. yes that's good thinking... the Endo did do bloods for tpo antibodies amongst other things. It's the waiting, as you say that's frustrating. When Endo said no you're within range at 4.24 TSH and 12.1 ft4 ... I said but you haven't done bloods how do you know it's still at that. They are cold and ignorant the way they treat vulnerable Thyroid patients. Hopefully I will be able to prove the hypothyroidism. Will go to a private Endo if necessary. Going to take out health insurance soon. NHS is ridiculously slow for outpatient appts. I waited 6 months for the respiratory consultant and collapsed the next day in surgery with wheezing. Had to be nebulised.. lucky I was in the surgery. Now I need an ultrasound of kidneys and there is a 3 months waiting list. I would not rely on NHS in the future as it's so penny pinching. Even when you mAke an appt with a nurse now.. they actually phone you to ask you what it is for which bloods etc. But anyway it's lucky people are informed in this very good forum. Hugs to all Tcare xxxx

  • Hi Eljii sorry can I be thick and ask U to expand on this chart . What does movements mean for instance . Parasthesia I know . Why isn't low basal temp on there. And does sweating mean U do not sweat . Is the dry skin everywhere . Is the puffiness just your face . And what are criteria for reflexes . Sorry no need reply if U have no time coz not important just interested . Thank you xxxx

  • press.endocrine.org/doi/10.... is the original.

    drive.google.com/open?id=0B... has explaining text with no importance variations shown

    "Slowness" I think means slowness of motion when buttoning and unbuttoning

  • Hi Eljii ,thanx I have checked out the articles and gathered the just of it I think . But brilliant info thank you .

    I have 5 definitely but I am concerned that my main symptom that made me present to the doctor in the first place. Is brain freeze or brain fog . even when a lot of my symptoms are manageable thankfully . Brain fogs are my concern still . I have episodes of it . Its not all the time .

    I am now worrying is this not to do with my hashi's . Should I be worried it has another cause .

    Thank you Carole

  • An endo-professor repeatedly here tells brain fog often remains if T3 is not added

  • Thank you but I am on t3 only though now . For few years . My free t3 is always too high . 8.0 to 9.0 . Top of range for my lab is 6. something . As most symptoms better consultant let me stay on dose producing this result . But now as exhausted day after I work and lots of days . And brain fogs affecting work . Then I am trialling a drop in daily dose from 40 to 30 a.its my third day .

    Do U think overmedicating can cause brain fog . Also how many days till feel effect of changed dose do U think ?

  • T3 is fast-acting in the BLOOD but how about inside your cells. Only the 24h urine test tells. The endo-professor says low cortisol keeps T3 from acting

  • How much does 24 hour urine test cost . An I had short synacten test about 5 years ago . Would that count as a cortisol test .

  • Oops will now write

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