Endo next Wed, advice please!

Next Wed I'm seeing an endocrinologist that I saw privately in December 2015. At that app I told her I suspected that I was hypo due to long list of symptoms that pointed towards hypothyroidism. My GP had requested a full thyroid blood panel but because my TSH was within normal limits lab refused to do all the tests.

The endocrinologist was quite dismissive of my symptoms and informed me that I was obese, needed to lose weight and should exercise more! If I did this then I would lose weight and have more energy. Oh plus I shouldn't waste my money getting a full thyroid blood profile!

Since then I have found this wonderful site and got a full thyroid profile done with Medicheck in Oct 2016 which showed I am positive for Hashi antibodies.

I came away from that app very upset. I am seeing her this time as a public patient and you may wonder why I would return again, well endocrinologists here are few and far between, so limited choice.

Any advice on how to deal with her at this app so that I don't come out feeling like c..p? I have completed the UK thyroid list of symptoms and plan to give her that, plus show her the Medicheck results.

Thanks

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  • if you post the result up on here the more experienced members will be able to give better guidance on how to approach discussing them with your endo, the fact you have hashi's means that you will probably gradually start to feel worse so the endo should take notice. post up the results this will help get the right advice. you need to list the test, the result and also the reference ranges.

    x

  • I've had a similar experience my endo called me an addict and I've self diagnosed and that I don't have Addisons despite cortisol levels showing there is definitely an adrenal insufficiency , he wanted me to do more tests so I have been playing along with him, I will put a complaint in at some point but I'm trying to get on his side !! Despite my best efforts I keep getting ill so it's been a real problem.

    Try and engage and discuss options I would look at options to help you loose weight if that's needed only you can decide if that's the case.

    As angry and upset as I was I felt he really didn't know me despite his suggestions but I realise he may have just been having a bad day ! Play the game and see what you can do to get him on side .

    Do your best that's all you can do and be honest and open with them if they still are dismissive then perhaps contact pals or practice manager !! And explain your concerns on how you were treated !!

    Good luck ๐Ÿ™๐Ÿป๐Ÿ™๐Ÿป๐Ÿ™๐Ÿป

  • Take your private tests along with you and say you have Hashimotos Thyroditis. Hopefully they'll be more sympathetic. Should put you on meds. I suggest NDT (Natural Dessicated Thyroid) has all the T's and for most people works better than T4 alone.

    Talk to endo about adrenals, often under stress with Hashimotos

    You could also ask about the link with the Epstein Barr virus, this will put them on their toes hopefully as they'll know you've researched.

    If they dismiss any of these things then they are rubbish like most go's and endos in the uk when it comes to thyroid/Hashimotos!

    In which case we will help! ๐Ÿ˜€

    I'm doing it all myself now as my endo was about as much use as a kick in the teeth and I had more knowledge(even though limited) than him!

    What was your TSH? Under one is optimal for us to feel well.

    Research leaky gut. Chris Kresser website is good for this or Josh Axe.

    You need to be gluten free. Casein in milk is also a problem as it looks like the gluten protein.Try almond milk, so delicious.

    Have you tested Vit D, B12, Folate and feretin? Important all at top end of scale.

    I can't eat any of the nightshade group as makes bones and joints hurt. So that's potatoes, tomatos, aubergine. Worth leaving out and seeing if it makes a difference for you.

    Probiotics and prebiotics will help to restore microbiome.

    Izabella Wentz website is useful.

    Dr Datis Khazzarians books are brilliant for Hashimotos.

  • Dear annabhaird,

    I would get the results aka your TSH level results from the GP to act as ammunition. Tell the Endo how you have been feeling. If she/he gets all high and mighty ask her/him, if they have a thyroid condition? (invariably they will say no and they do not like being put on the spot, expect a silent reply as well) Tell them how you feel basically and not accept no for an answer. Also ask, if you can have your ferritin levels checked for B12 deficiency, anaemia and vitamin D deficiency and always get the results and ranges. (these have similar symptoms to thyroid conditions) Saying the results are fine or normal are not acceptable by you as a patient.

    If your GP does not approve any tests, I would have them done privately if affordable, go with all the ammunition you can get. Its your right to have quality of life.

    Yes you may be overweight, but if you have no energy because of things going on in your body, then you need them under control before you can start to lose weight and exercise.

    Just remember, they are not God, they have a degree and an opinion that is all. They are supposed to have empathy and listen to the patient, not categorise and chastise you.

    I am a grumpy old mare these days. But who the hell has anyone, a right to tell you that you are ok, when obviously you are not.

    Hope all goes well and let us know how you get on.

    :)

  • ~ Well said ~

  • Ha ha, as I said - I can be a grumpy old bag! ;) ;)

  • - that's a good and healthy trait. I am convinced about that now.

  • Hi JOLLYDOLLY

    You are so right we can decide how we FEEL!!! Think some of them do think they are god!!!!! Xxxx

  • They do indeed Dreamer12! ;)

  • its all very well him saying exercise but if you are hypo you wont have the energy. My experience was exercise made my joints hurt so badly it was unbearable and had to take co-codamol. My muscles were weak and shaky (after years of sport i suddenly couldnt run, walk, do squats) I would be wiped out for days, bed bound and all hypo symptoms much worse. Exercise also stressed my already low cortisol levels. I had a really sparse diet and didnt lose weight. I have been on medication for a year and can do a good walk for 1-2 hours twice a week i am still trying to build up strength and stamina. Diet and exercise for me was stressing an already stressed body. I lost 2 stone last year eating more than when i dieted because im on thyroid meds and my metabolism is waking up, i am still not really active and nowhere near my pre thyroid days of running daily, horse riding, walking the dog for hours, judo, gardening etc. If i over do it my body puts me right back to square one to recouperate, with pain, exhaustion and all my other hypo stuff.

    My TSH never went above 5 but i was so ill my life wasnt worth living, i was fobbed off by my dr as a depressed, over weight, menopausal woman. I wish i had this group 8 years ago and self medicated instead of trying to get a diagnosis and dealing with my gp, i wasted several years of my life that i wont get back. Most drs and endos are deaf, stupid and just not interested, i have taken one endo to the ombudsman, my dr closed his practice after apologising to me. I am happier, healthier and less stressed taking care of my own health.

    Are you able to travel to find a better endo? some are unwilling to learn or listen, its your heath, you must do what is right for you not a dismissive dr/endo who couldnt care less.

    xxxxx

  • Hi Binkie

    Exactly dealing with dismissive endos/gps is such a complete waste of time. It's like talking to a brick wall sometimes!!! ๐Ÿ˜€

  • Disgusting how drs feel they can treat people.

    What was your tag?

  • Sorry, that should have been what is your tsh?

  • Hi EIRR

    Sorry for delay getting back to you. My blood results from Medicheck in Oct 2016 are as below. I haven't had the checked since - was waiting for my app with the Endo which is this Wednesday 15th

    TSH 2.7 (0.27 - 4.2 mIU/L)

    FT4 14.39 (12 - 22 pmol/L)

    FT3 4.85 (3.1 - 6.8 pmol/L)

    T4 92.2 (59 -154 nmol/L)

    TGAB 179.7 (0 - 115 IU/ml)

    TPOAD 9.2 (0 - 34 IU/ml)

    Folate 9.19 (4.6 - 18.7)

    Vit D 154.7 (50 - 200 nmol)

    B 12 473.5 (191 - 663 pg/ml)

    Anna

  • You're endo is an idiot (which we all knew already). Someone can have hashimoto's thyroiditis with a normal TSH and the symptoms/problems of thyroid disease. Lovely how endos know so how little about the diseases they treat.

    It could be worthwhile to search google scholar for hashimotos antibodies and normal TSH to find a really convincing article to bring your dr. Thyroid UK might be able to point you to something. Here are a few places to get you started.

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

    medscape.com/viewarticle/76...

    hypothyroidmom.com/hashimot...

    Good luck!

  • Hi EIRR

    thanks so much for the links, very informative. I will certainly use some of it at my consultation on Wed.

    Anna

  • Good luck. Let us know how it goes.

  • Well, for a start, if you are in the UK, do not go in asking for NDT - probably wouldn't know what that was, anyway, and would then tell you it was not licenced in the UK, which it isn't. And, even if you aren't in the UK, do not use, as your argument for NDT, that it contains all the Ts. Because you have absolutely no proof of that, and the odds are it's not true, anyway. It contains T4 and T3, that's the most you can truthfully claim without risking getting his back up.

    Take your private results with you and point out that you have Hashi's - or probably better to call it 'autoimmune thyroiditis', because they don't seem to like the name Hashi's, for some reason. And, suggest that you've been told that when you have Hashi's, your TSH may be 'in range' (don't use the term 'normal') now, but eventually it will go high, and, it's usually a good idea to start thyroxine now, to support the gland during the attacks. And, therefore, would he possibly consider giving you a trial of levo, now, to see if it makes you feel better, please? Don't grovel (lol), speak normally - as normally as you can - and be polite. You could also say that you know you need to lose weight - and you honestly want to lose weight - but all your efforts in that direction have failed, and you truly believe it is because of your failing thyroid.

    And, if she's still dismissive, there's not much else you can do, really, except try self-treating.

  • Well said grey goose!! Xxx

  • Thank you. :)

  • Thank you all so much for your kind words and encouragement. I'm at work at the moment, when I finish i will post details of my bloods etc, easier to do on my laptop rather than on my mobile! ๐Ÿ˜ƒ๐Ÿ˜ƒ

  • Hi Anna .., good luck at your appointment !!! Xx

  • If you are near Cardiff, there is a local hospital that has a thyroid clinic that is offering NDT as a treatment option. You'd have to get an endo referral. The NHS would only cover the prescription for a short time, I suspect, but so far I've been able to see if T3 can work for me (4 months and counting). My surgery has cut off my iron tablets because at a level of "52" (from a starting level of "19" - the range begins at 15) apparently I'm now normal. Despite having taken 400 mcg per day, I could never get beyond 52. The doctors think I no longer need tablets because obviously 52 is a good number and I'm converting well. "You're on the high end for menstruating women" was my doctor's response. When I suggested that shouldn't ferritin be higher for those with Hashimoto's? Blank stare.

  • If you need iron supplements they can be bought online or in some pharmacies in the UK without prescription. I'm specifically talking about the supplements doctors prescribe.

    evidence.nhs.uk/formulary/b...

    I was prescribed ferrous fumarate 210mg by my doctor. It comes in boxes of 84, which is enough for 1 tablet, three times a day, for 28 days. Obviously you can take fewer tablets per day.

    I discovered by accident that I could buy ferrous fumarate and the other supplements listed on that link above without a prescription and I've been doing so ever since. I also pay for my own iron testing because I hate having to beg all the time.

    It is up to pharmacist's discretion whether or not they supply prescribed iron supplements without a prescription. If you can't get it from one pharmacy try another. I got it from Tesco Pharmacy and Lloyds Pharmacy. Boots often refuse to sell it though.

    If they ask why you need it just say that your ferritin levels were low and your doctor told you to buy your own supplements.

  • Are you in Lincolnshire?

  • Hi Linda

    Sorry for delay in getting back to you - I live in Ireland. Anne

  • Once again thanks so much to everyone for your support and advice. Hope you don't mind that I haven't replied to each of you individually. I will post on Wed to let you know how I got on. Anna

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