hi all. I have an appointment with an endocrinologist tomorrow on NHS which I have been asking for for years. Was diganosed at 19 with under active thyroid. Always felt tired but looking back felt normal compared to how I have felt since having my son 2.5 years ago.
finally got an appointment as I am so poorly!
Does anyone have any tips or advice for me to go in with please?
I have written things down and what symptoms i have and when and that my tsh goes high when I try to eat more (which I need to do) but my t4 is also high so unable to increase thyroxine as then I get a whole load of over active symptoms then.
I have severe anxiety and I believe I have some sort of adrenal issue. I have a blood sugar imbalance.l which I am trying to manage too.
What can I request?
Will he check nutrients like iodine, selenium etc?
I am going to ask to be tested for Hashimoto as I don’t think I ever have been tested for that and only ever been told it’s primary hypothyroidism.
thanks x
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Goinginsane1
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There have been some recent posts with Dr Westin Childs on . You could do a lot worse than look at the TSH one and the endocrinologist one- just find him on YouTube. Is the endocrinologist someone off the Thyroid UK recommended list?
Shame it’s a last minute appointment, not sure how much information you are going to be able to glean day before.
There is No Way we can anticipate how your appointment will play out. You will only know if you have a gem 💎 or a dud 🪣until after the appointment. One thing I would say is write down symptoms and effects of eating etc. and try to be detached - as if you are reporting on another patient. The minute we say “Oh I feel….. “. Most (not all) clinicians pretty much turn off.
They take the guidelines provided to them in good faith and mistrust the patients when they’re not responding to treatment based on those guidelines.
They are never given the time to fact check the information NICE provides and NICE pretty much follow the Big Pharma advice and recommendations.
🤗 good luck with the appointment. I believe you can ask for a second opinion and it might be good to check back if this first one hasn’t come off the recommended list.
Well you can ask but ….. I think it is brilliant that you have printed out and if they make any snotty remarks about not accepting private tests just point out calmly in absence of any thing else it is better than nothing.
The NHS tests nothing at all and I have found private tests invaluable in my self advocacy- which might be closer to the issue. 😉👍
Yeah. I have been praying for an endocrinology appointment for a few years now due to being so unwell.
I was hoping they will be able to help me but I’m thinking I am probably going to have to figure it out myself by balancing my blood sugars, trying to tackle my anxiety etc. easier said than done when I have high TSH and high t4 and both cause anxiety! 😞
It would be worth printing out one of the very recent ones and ticking off which symptoms you suffer from.
You could also score any of the symptoms you suffer from to say that, for example, your headaches are 4 out of 10 in terms of pain and effect on you, and fatigue is 7 out of 10, or whatever. Choose your symptoms and scoring them could be helpful.
If you can remember to do so, it is also a good idea to avoid using the words "I feel". It would be better to use "I am" if that makes sense.
Doctors think women are all mentally ill because they talk about how they feel all the time. I only read this recently so haven't seen a doctor to see what difference it makes if I try and avoid saying "I feel".
I have no idea. The idea that saying "I feel XYZ" is a bad thing to say to a doctor is a new one to me - I only read it recently. I think I would struggle to change the way I use language particularly since my spoken vocabulary is diminishing all the time. Even when I'm writing I have to "sneak up" on some words because I know there's a word I want but it doesn't appear when I want it!
Yes, I know the problem. Words often elude me, too. Even words I use regularly.
But it's rather illogical of doctors to think that way. I would have thought that medicine was all about the way you feel. And, logically, I'm not sure there's much difference between saying 'I feel tired/cold/hungry/etc.' and 'I am tired/cold/hungry/etc.' Perhaps the latter is more forceful, but not that much so. Makes you wonder how these peoples' minds work. And we're supposed to trust them with out lives? I don't think so.
I am not on a gluten free diet. I don’t think I have any issues with the gluten I do eat intolerance wise. I could ask to be tested for that though. I have other intolerances and limited with foods I can eat so going gluten free would be difficult for me as I would know what to eat.
I take an omega 3, probiotic, and the last few days a b complex.
I always test before 9am and on an empty stomach and the thyroxine taken the morning before. I have just stared a b complex. Do I need to stop taking that a couple of days before a thyroid blood test?
I always get Accord brand. TEVA caused all sorts of issues for me.
I have blood sugar imbalances which I am trying to manage and severe anxiety with consistently high cortisol. I think I have some sort of adrenal dysfunction taking place. Hoping the dr will be able to run some tests for this too.
I can’t eat milk, yoghurt, cheese, nuts or anything spicy. I have coconut milk.
I am eating healthy. But I suspect my severe anxiety is affecting it all. I think I have an adrenal issue and very little energy. I struggle to even do much housework at the moment and a gentle walk is about all I can do.
Trying to balance blood sugars as best I can. And trying to deal with the anxiety but it’s really not easy.
I suspect low estrogen levels are also playing a part too.
I take an iron supplement daily too and everytime I stop taking it I get more symptoms and my t3 drops again. Feel like I’m going to have to take it everyday forever 💁
how i would I get tested for hashimotos? Do you think the endocrinologist will do this for me tomorrow if I ask? They have only ever said it’s primary hypothyroidism and that was when I was 19 and I’m now 36.
I know that since my little boy 2.5 years ago I have been really unwell but I have low estrogen levels too and have tried not to go back on the pill which I was on for 17 years but I have just restarted it in hope that increasing those hormones will bring me some sort of balance and help my anxiety. I am worried that the pill is going to affect my thyroid even more though but I have to try something as anti depressants don’t agree with me. I’m praying that the pill will help balance me out and in turn the reduced anxiety will help my thyroid function better 🤞🏻
I am having symptoms of an under active thyroid or fatigue like never before, achey muscles like my calf’s are going to cramp up all the time, was having stomach acid issues
Are you taking any vitamin D supplement?
If yes, how much
Or magnesium supplement?
Cramp often linked to low magnesium
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function and doesn’t need to be 4 hours away from levothyroxine (unlike vitamin D tablets)
There’s a Better You version made that also contains vitamin K2 Mk7.
I eat cereal and eggs daily for some vitamin d. I also take an omega 3 that includes 400 vit d. When I have taken other vitamin d tablets they make me feel really sick for some reason so not sure I can tolerate them 😞
As I understand, the new NHS Wales app hardly does anything - and does not support access to any test results. Just a few basics (ordering repeats, appointments, and not much else) and even that might not be available everywhere.
Absolute waste of time with that endo appointment! 😞
He wasn’t willing to hear when I said that when I eat more my tsh goes over and if I were to increase my levo my t4 would go over too and cause mine over active symptoms then. Just dismissed it.
I said everytime I stop taking an iron supplement my t3 drops and he told me that iron doesn’t affect t3 or conversion and he did an MD and studied conversion so it would be iron that helped or not helps it. But it definitely does!! I wanted to scream at him!
I didn’t even get to say everything I wanted to say as he ushered me out and said he has another patient.
Didn’t get to ask about hashimotos, or t3 medication. He said that all of my levels are normal even when I said that they should be better and more at optimal. Just dismissed.
He told me that my TSH only went slightly over at 4.9 and that it would nt have caused the stomach acid issue or the horrendous fatigue! It flipping week did!! And I can’t increase my meds due to t4 being at the top end already! 😡
Vast majority of endocrinologists are diabetes specialists and completely useless for thyroid
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Thank you. I have booked someone off the list but not sure if she is on nhs too but she has hashimotos herself based in Bristol I believe. Not sure if she can help prescribe t3 either.
I laughed in disbelief leaving the room earlier. Telling me iron has nothing to do with conversion! And he did a MD on it. And didn’t want to hear about if I increase my dose my t4 goes over and the only way I have brought the TSH back down is to reduce what I’m eating again (but I need to eat more as I am underweight now). He said I basically have to decide whether to stay on 75 or increase it to 100. If I take 100 I will be having even more severe anxiety and a whole load of other symptoms that come with an over active thyroid! 😞
Showed him the charts for medichecks results to show my levels over a period of time and what happens and when but he just thinks I’m crazy I think!
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