Long rant alert

[Baggiesfan]

Just need to vent sorry. I had a zoom meeting booked with my private consultant 2 days ago, arranged for 11.00. By 14 mins past after staring at myself on the screen from before 11.00, I emailed his secretary asking what I had done wrong as nothing was happening, had I got the wrong link? Anyway a little after I had sent it he appeared on the screen, apologised for being late and said he had been having trouble with zoom. I could see him but he wasn't looking at me so I don't think he had his video link to me on.

No problem I said and briefly told him how things were since starting T3, better in some ways but awful ectopic beats which are really troubling me. He said my blood results were strange, I had sent them via email earlier in the week. Low T4, T3 just in range now, (I put them on here last week). He just said reduce T3 to twice a day instead of three times. I asked should I increase my levo as he lowered it when I started T3. No he said, just drop to twice a day, retest 4 weeks then speak again in 6 weeks. That should sort you out he said. I briefly asked about the supplements I am taking and he just said yes that's fine and ended the consultation.

I emailed his secretary back to let her know I had spoken to him straight away. It was then 11.26. I then got really annoyed with myself the way the consultatation had gone, felt I had been short changed and rushed to say the least. He seemed to be rushing me to catch up his lost time. It lasted less than 10 minutes, £180 that's £18 a minute to tell me to drop 1 dose of T3!

Well, I have dropped back to twice a day and the ectopics have settled which is fantastic but now I have heartburn again. I had to take pantoprazole which I had only taken 3 since starting T3. I'm also less motivated, very tired, but can't sleep. Will this settle once I get used to the lower dose or will it go more downhill?

I guess my question is shall I do as he said and try once more with him or just do my blood and try and work it out with your advice on here? Thanks for reading my long rant.

[greygoose]

Am I understanding this correctly? He said to reduce your T3 dose even though your FT3 is only just in-range? Sounds more like you need an increase in dose, rather than a decrease. Your FT3 will go under-range now, it doesn't make sense.

[Baggiesfan in reply to greygoose]

No it didn't to me but I assume it was to help the ectopics, which it has, so better there. I did ask about increasing levo but he said no. I understand not changing 2 medications at the same time so you know how things are going but after all the help on here I thought he would increase my levo first. I'll give it a week and see, then phone his secretary back, but yes I'm very disappointed and disillusioned by the consultation. Like most, I don't want to throw my hard earned pennies away and it feels like I have. I'm sure I'll get over it and things will hopefully settle x

[greygoose in reply to Baggiesfan]

But, being under-medicated is not going to do you any good. And, the answer would not be to raise levo because resumably, you started T3 because you weren't a good converter. If you can't convert T4 to T3 then increasing the levo is not going to raise your FT3, is it. I'm afraid you did waste your money on this occasion. I think I would demand a refund!

[Baggiesfan in reply to greygoose]

Thank you, I thought increasing my levo back to where it was and continuing T3 might help. I'll email his secretary and explain how I feel.

[greygoose in reply to Baggiesfan]

Well, it might help a little, but if you can't convert well, it's not going to replace the missing T3 - on which you were probably under-medicated, anyway!

[Baggiesfan in reply to greygoose]

I thought the same but I'll go with it for now but get back in touch with him if things change for the worse.

[Shield-Maiden]

Hi Baggiesfan,

I'm sorry that you've had to go through this...the inadequate treatment, not to mention, the rude attitude.

I would save your money.

You will get better, and more knowledgable, advice on here (Greygoose being an excellent person to take advice from; and there are many more knowledgable wonderful people on here).

Put this one down to experience, so it's not a total loss of money.

I hope you start to feel much better, and, soon.

Shield 👋

[Baggiesfan in reply to Shield-Maiden]

Thank you, I appreciate your reply.

[tcpace in reply to Shield-Maiden]

I second that about GG (plus other excellent contributors on this forum).

[janeroar]

I think you should write him a polite letter. Say the consultation was very short and you would like him to give you some more detailed advice such as - why drop T3 when only just in range?

- what’s his treatment plan, it is to titration T3 up once ectopic beats settle or introduce t4

-give him a detailed explanation of how you feel physically and mentally so he has context.

You can post his reply here and then you can decide whether his advice is worth the money.

Personally I don’t bother asking for thyroid advice anywhere else but here now. The detailed knowledge and understanding about hashis is far better than I’ve ever encountered with a doctor.

[Baggiesfan in reply to janeroar]

Thank you, yes I'll send an email to his secretary to discuss with him. That's a good idea to ask him what his plan is as he didn't discuss that, he just said that reducing T3 to twice a day should do it. Have to admit feel better not having almost constant ectopic heartbeats.

[janeroar in reply to Baggiesfan]

Have you tried breathing exercises to regularise your heart beat?

[Baggiesfan in reply to janeroar]

Thanks, yes I did, but nothing settled it, it just came on out of nowhere and would last for hours. Better since dropping back to 2 T3 a day so hopefully it will stay that way .

[Hidden in reply to Baggiesfan]

I would go with things like i'm just trying to go through things and remember things he said/to do as Zoom was so very short i didn't have time to take things in as i had things needed to ask and trying to deal with his replies in a sort of rush was info overload!

So i'd like to clarify it all

[Baggiesfan in reply to Hidden]

Thanks yes I will, lots of suggestions and support here so I can send an email tomorrow. Not expecting much but at least he will know how I feel xxx

[McPammy]

I would compose a polite email asking for a reduction in his fees for your shorter than usual consultation. Or he could offer you your next consultation free of charge. I once did this with my private Endocrinologist that is in Oxford who I felt short changed myself once. I’m wondering if he’s the same person? He immediately responded and waived my fee with apologies. I’d follow his advise for now and see how you go. I wouldn’t go changing any meds other than reducing your third daily dose. Give it a few weeks and see how you feel. It always takes a good week at least to feel the change when altering T3 in my experience. If it is the same private only Endo he definitely helped me get well.

[Baggiesfan in reply to McPammy]

Thank you, I think it may be the same consultant and I'm very pleased and encouraged that he helped you. I was thinking overnight that I might write an email to his secretary, she's very good and explain that I feel short changed. We all have off days I know but it's so frustrating when you've been waiting for an appointment. I have to say much less ectopics since dropping down T3 to twice a day so yes I'll give it chance to settle and see how I feel.

[McPammy in reply to Baggiesfan]

Yes, it is very frustrating and upsetting when you’ve waited so long for a consultation. I drove a 400 mile round trip and was only seen for 10 minutes as he was in a rush as running very late due to some earlier mix up. I was very upset at the time. He waived my charge and did a longer consultation the 2nd time for a lower cost too. In the end it did all work out extremely well. I’m now on T3 twice a day plus liquid Levothyroxine. I must say I’ve never felt so well and happy in years. I’m a poor converter and positive DIO2 gene test too. I only took a third dose of T3 when I was regularly going the gym 4 times a week once I got better. I’m now back to two doses as I went over medicated for T3 once I stopped the gym when covid arrived. I truly believe T3 is about energy expenditure and what you dose with. Even lately I’ve felt a tad over medicated and I feel it’s crept up as I’ve been doing less during autumn than I’d do in the spring snd summer months. I also experienced exactly the same this time last year. So I’ve slightly reduced my Levothyroxine dose to compensate rather than reducing T3 and it’s worked after 3 days of Levo reduction I’m feeling better already. I just dropped from 75 to 65 a day. For myself small changes matter.

I’m glad your palpitations have calmed down. Keep going and see how you feel and where your next bloods take you. My TSH is in range 0.64(0.35-5.50). It normally hovers around 1.00 which is what I aim for.

[Baggiesfan in reply to McPammy]

Thanks, McPammy, I too drove a fair way, not as far though, about 300 round trip. My first consultation was only 10 mins then my second last week was even less so yes I'm going to write in. I like him but I wish he didn't seem to be in such a rush. Its important to have a little more time to ask and get answers especially when we are paying for his expertise. I think I'm similar to you, probably not done as much recently, especially with the ectopics, so was over dosed. I haven't done a DIO2 test, just the cortisol which was in range. I found this strange as I have lots of symptoms of low cortisol.

Thank you for your encouragement and hope you keep well too.

[McPammy in reply to Baggiesfan]

Just on cortisol.. I had very low blood results before starting T3. Once I started it it shot up from 68 (155-650) to 450 within 4 weeks. It’s settled now around 250-300. I get it checked still by my GP every 3 months along with vitamins and full thyroid. I get it all checked when I get my B12 quarterly injection. Only one appointment necessary every 3 months then. I send all my results to the Oxford Endo even though they are all now good and in range. I just thank him for his advise and I’m still doing very well indeed. It never costs me anything now. I also lost 4.5 stone too without even trying since having T3 and keeping my TSH around 1.00. I hope you get a good response from him from your email. Keep positive and keep moving.

Xx

[Baggiesfan in reply to McPammy]

I will, I pay for all my blood tests, the gp only does Tsh which I now know is as good as an ashtray on a motorbike to me. I haven't lost any weight as yet but have gone from 9st to 10.5 stone in a year, I can focus on that as I improve, just want the old me back and to have a good laugh again 🤗. I'll see how I go, email his secretary and take it from there x

[HashiFedUp]

Sick with the consultant. Be patient. If i have learned anyway its that thyroid issues take a long time to be resolved. Its a long and winding path!!

[Baggiesfan in reply to HashiFedUp]

Thank you x

[bluejourney]

Thank you for sharing your rant! I think I know who you mean. I had a similar experience with Oxford private endo a couple of weeks ago - late onto Zoom, 15 minutes which should have been 20, I felt very rushed and that he wasn’t really listening to me, and he hadn’t briefed himself on the information I had sent him - didn’t realise I was already on Levothyroxine. I am sure his advice is very good, however, as he’s said to be extremely experienced and knowledgeable, and forewarned is forearmed. Next time I have a session with him I will check how long the session should be beforehand, say to him at the beginning “I believe this is a 20 minute session, so due to end at ….”, say at the beginning that I have a number of questions to ask, so he’s primed. I always have a long list of things typed out that I want to cover, though I rarely get through them all, as you either feel rushed, or you see their eyes glazing over!

Symptoms of low cortisol are horrible, especially when their tests keep saying there’s nothing wrong with your levels. I feel the same, and am a bit anxious about raising my Levo and it affecting my cortisol levels. I don’t know if you’ve heard of it, but there’s a new device called U-rhythm being developed in Oxford that is fitted to your abdomen and measures your cortisol in your tissues (more accurate than in serum) every few minutes for a 24 hour period. I think this will be a game changer for assessing cortisol.

Hope you get your dosing sorted out ok and feel better soon.

[Baggiesfan in reply to bluejourney]

Thank you for replying. You got 15 minutes, I only got 10 after travelling down from North Shropshire then about 7 on the zoom meeting last week! I definitely get about feeling rushed and eyes glazing over, I felt the same, had my list typed out and ready like you. That's a good idea starting the conversation with how long you expect the consultatation to last and you have some questions. As I said I will write a polite email, attach a copy of my list and also ask what the plan going forward may be. I don't know what to do about low cortisol symptoms, just wait and see I guess. Not heard of the new method, I'll look it up.I do feel he is very knowledgeable and after all he did let me try T3 which I'm sure is the answer, just need to get dose right. I do feel better with fewer ectopics.

Hope all good with you too x

[bluejourney in reply to Baggiesfan]

Sorry, misinformed you. It’s a professor in BRISTOL who is developing U-rhythm, and the pandemic has held up progress, but they’re at the stage of preparing the manuscript describing healthy normal variation. I don’t think they know yet when it will be available, but I think it sounds exciting. They’ll learn so much more about cortisol production.

Yes, sorry to hear you were so short changed. Hope you weren’t planning on a luxury holiday. After private testing, I have just increased my vitamin D intake, vitamin K, vitamin A, and about to increase my Levothyroxine, so am in hopes of feeling better soon. At the moment it’s a real struggle to get out of bed in the morning, and then I feel on the back foot all day. Can’t wait feel some progress.

[shaws in reply to bluejourney]

I am not medically qualified but believe if we're good converters of levo (T4 alone) into T3 - the active thyroid hormone required in all of our T3 receptor cells - that it should restore our health and reduce any clinical symptoms.

[tcpace]

For those that don't already know, Zoom sessions can be recorded, Just ask the host for permission to record.

[Baggiesfan in reply to tcpace]

No I didn't know, thanks, I'll have a look and ask next appointment.

[Hidden]

There’s a lot of profiteering going on in Private Sector now. I was charged £230 for a 15 minute Face to Face Consultation - with no examination - to tell me I had IBS.

What I call just going through the motions 🙃

[Baggiesfan in reply to Hidden]

It's so frustrating isn't it, we put so much energy into what we want from an appointment then get let down again? To be fair he did examine my neck and check my pulse but as you say it's a lot of money for a few minutes. Hope you're sorted soon.