First NHS Endo visit

Well how did it go, ok he didn't discharge me outright so that's good! He did ask some pertinent questions such as family medical history and as far as I know no-one in my immediate family has had any known thyroid issues but my mum has rheumatoid arthritis as did my Dad so the likelihood is that I've been passed something down?

He did ask how I felt - so I read him out the entire list of my symptoms from the Thyroid UK checklist and there's a lot and he kept the copy for the records (I think his eyes were glazing over at one point but hey it was my moment and I was taking it!)

Then he noticed that on my blood test result notes that I had quoted bits from Stop The Thyroid Madness and he was like ok - so let me tell you that I don't subscribe to any of that and that basically he believes that the TSH score is the gospel and that's it and if the TSH level is in the normal range, mine is 3.4 (0.3 to 5 range) then despite being very symptomatic, he's not going to give me Levo - I said OK but I am pretty much symptomatic and there are missing pieces of the jigsaw puzzle here because how do you know just by looking at me that I don't have some T4/T3 conversion problem or that I don't have secondary hypothyroidism and he's like no not with that TSH/T4 score T4 is 15 (9 to 25 range) but he did say that yes it would be worth running the entire Thyroid panel again with both antibody blood tests so here we have KK12 1, Endo 0!

And of course the lab have to be in the right mood to do ALL of the tests.

So then we went on to discuss the sex hormone stuff and cortisol and he wants to do the blood cortisol test - as he wants to rule out Cushings! He's running the FSH and LH tests as he doesn't want to say I am definitely in menopause on just 1 reading of FSH so ok that's fine.

I did tell him that I have the saliva cortisol test to do soon - he seemed interested but then he also doesn't believe in stuff like adrenal stress!

Then he's on with testing me to see if I am Coeliac, have never had the tests done to rule that out (he seemed quite surprised) but ok go ahead, then full blood count and then he will look at my Ferritin levels again as they were low at 26 (10 - 420 range) and I have been supplementing and I said to him that I am supplementing that and folate, Vit B12 and Vit D and although have felt some difference, it's not been significant.

I told him that as far as I am concerned I have had a very weird science around the whole weight gain/weight loss scenario right from the get go, I was never a slim kid but if you look at me aged 17, I looked practically anorexic!

The times when I have been at my slimmest, I have been eating crap food and drinking a lot more alcohol and the times when I am at my heaviest, I am near enough tee total, eating as clean as possible, nearly gluten free, hardly any carbs, cut down on sugar and I weigh a ton so what's THAT all about!

I said to him that I went on holiday 2 weeks ago and was a lot more active than usual as in walking around but I drank more than usual and ate slightly more and went shooting up to 15 stone 13lbs from 15 stone 6lbs - my husband put on weight too to be fair but half what I did - as for me, I was swelling up big time so I could see the fluid build up in my ankles - just over 2 weeks back and today I am back down to 15 stone 7 lbs - I've done nothing different and in fact, I came back from holiday ill with a sore throat and a bit of a cold so maybe he could explain that and maybe he could explain why when i felt that I was burning up with some kind of fever and when I took my temperature several times, it always came back at 35 something C??!!

Of course he could offer no explanation so I told him that my theory is that my adrenals took a battering last year (legal case, professionally negligent solicitors, still on going,having to sell my house, ex getting half the proceeds, elderly mother, stress of being self employed etc) and that's when I began to feel ill (never gone to the Dr's so much in my life as much as I have this year) and that's when I started reading more into Thyroid issues and I really do believe that I have a problem and even if it may not one of the common issues that's not to say that I don't have something uncommon!

So there you go - back to more blood tests!

16 Replies

  • KK12, you explained yourself very well and he appeared to take you seriously but the elephant in the room is the lab ref range and the fact is he isn't going to treat you until TSH is >5.0 even if antibodies are positive.

    I've no doubt your symptoms have preceded abnormal bloods, I just don't understand why doctors don't get it too and let the suffering continue until bloods are abnormal.

  • Thank you Clutter - I don't get it either because I always thought Dr's want to get you well - however I think the hand of pharma is at play here and the thyroid is not a trendy illness to have - therefore we have a bad press! I will get there by hook or by crook because I want to be well again!

  • kk12, if BigPharma had a say we'd surely have Levothyroxine at TSH 1.0. No, I'm afraid it's the dead hand of the BTA and Society of Endos etc. who decree the levels at which a diagnosis and treatment can commence.

  • I saw somewhere that the lab ranges would be changing Clutter? For me the jury is out re:Levo or NDT but seen so many people report that they are so much better on NDT that it's quite overwhelming but Levo must help some people surely!

    It's a travesty that dr's like to pop out the anti depressants for thyroid issues - I've had this happen firsthand and refused to take them!

    Mind you according to the Endo I saw there are private dr's in my area who DO believe in T3 so there is hope!

  • kk12, Most people do well on Levothyroxine but there is a significant minority which it doesn't suit. See this thread

  • No, Clutter, that's not right, because there's not much profit for BP in Levo! There's far more in statins and antidepressants and all the other muck doctors prescribe to 'treat' our symptoms. If we were prescribed Levo earlier rather than later, we wouldn't need all that Junk. That's where the interest lies.

  • ....and when you think that the body making up NICE are mostly on the payroll of Big Pharma - over 80% I believe. So keeping us under the cosh of the TSH results leads to even more illness - and subsequently more pills and potions making more and more dosh for BP....

  • Absolutely!

  • One of my friends worked for one of the Big Pharmas and she was that disgusted by what she saw etc that the first op she had to get out and take redundancy, she did! She retrained, did a degree and is now an acupuncturist!

  • Clutter perhaps you have something there! Not very ethical perhaps but a means to an end. If we could make BigPharma aware that they are missing out on $$$ perhaps they might bother researching and persuading?

    Ah just seen GG's post about low profit :(

  • I read your post with interest as that was me 8 months ago. I knew there was an issue, was so symptomatic and all my issues were happening in my neck.

    I paid for private consultant who told me all in my head, GP convinced I was depressed, had CFS or fibro, just had cold which was why I had lost my voice...

    Keep fighting. At least your endo listened. He might not agree but you got your points across very eloquently and he gave some consideration to your comments by the sound of things.

    End of January I had an urgent hemithyroidectomy and despite my blood levels being out of ranges I am really glad I had the op.

    Good luck to you

  • That sounds awful - I really hope you're feeling better now!

    When you know deep down something isn't right then you have to keep battling! I'm happy enough with today's outcome - it will hopefully be another step to getting well again!

  • Well done kk12, for fighting your corner. You did well to get him to listen and request other blood tests for you. Hopefully he will start treating the things that need to be treated. You sound quite assertive so it might be worth 'suggesting' a trial of T4 even though you are 'within range' ( I utterly hate that term because the 'range' is so enormous that most of the population must fit in it somewhere, doesn't mean they all feel well! ) to see if that makes a difference. If you can get your ferritin, floated, B12 and vitamin D well up in their ranges that will help you too.

  • Thank you - he was very adamant that he would not consider giving me any Levo at the range I was at in May but I will have a new TSH test done - will ensure it's an early morning one in any case and see if I have gone up or down. I am confident my Vit D dosing is good but not so sure about the others - I think I need more iron for my ferritin levels to go up which is why I requested another test to see where I am going - obviously a 4 week period is not going to help matters but I did up my iron intake for that.

    I just tick so many hypo boxes that I can't help but think it is a thyroid issue somewhere!

  • So annoying when you come across someone so intransigent, especially when they could be key to your well being!

    Long before I was diagnosed I knew I had some sort of autoimmune disease, I never felt really well. I searched through Lupus and Al. That sort of thing and knew it wasn't any of those things then lo and behold turned out to be Graves - I hadn't thought of that. I'd been tested to see if I had an under active thyroid and my GP was most surprised to find I was borderline hyper. That was probably about 20 years ago and not knowing what I know now I let it go.

    I suspect I've been lurching from under to over fir a long time - I have a little black dress that I bought back then - a tiny little black dress! I wore it again fairly recently when my Graves was at its height and once again I lost masses of weight. so I think that was probably what was the cause of my weight loss when I bought the dress originally although I wasn't as ill as I was this time.

    Back then I had several ECGs because I used to get palpitations and an irregular heart beat, nothing was ever found and I didn't push because Part of me was glad they didn't find anything. I was always very stressed due to my working conditions so everything was put down to that when it probably wasn't the case.

    So, bottom line, I think you know when there is something wrong witth you, I just think the thyroid affects so many parts of your body that doctors roll their eyes and think you are just another pesky hypochondriac - when you are not 😕

  • Or they think you are just depressed and hand out anti-depressants like Smarties!

    The poor Dr who rang me back for a phone consultation after one of her colleagues had sneakily prescribed me Prozac got such a tongue lashing, she never really got a chance to speak other than booking me in for an appointment with the most senior Dr in the practice!

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