This is the battle. It shouldnt need to be.

[Lucy___]

Most of it is in the screenshots.

Endocrinology discharged me without telling me.

The 25mcgs of levo I was taking was enough to switch my own ability off but not enough the replace it so my T3 and T4 are dropping even lower and are both well towards the bottom end of the range (especially the T3)

My GP wants me to remain on the 25mcgs and not do anything about it which surely is going to cause me to just get worse and worse isn't it?

Is it safer to continue on the 25mcgs knowing that it's causing me more damage or should I come off it completely until someone sensible can take over?

I'm just concerned that I am feeling so ill (which may also be related to my shockingly terrible menopause) and I don't have any room to feel more ill than I am as I've had to take lorazepam the last couple of days just to manage the level of anxiety I'm feeling over feeling so poorly.

What is the best route here to do for best?

I know I could also just double up on my levo now myself but I'm frightened as I have a heart condition which includes non sustained ventricular tachycardia (a potentially dangerous heart rhythm) and it can be triggered by some medications and I know that levothyroxine is particularly irritable to hearts.

I just don't know what to do for best.

I just want to stop feeling like I'm dying.

[Lucy___]

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[Lucy___]

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[Lucy___]

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[SlowDragon Administrator]

If endo has discharged you …..if GP won’t increase dose

Then you need to see different thyroid specialist to get dose levothyroxine increased slowly upwards in 25mcg steps until Ft4 and Ft3 are at least 60-70% through range

Typically that’s around 1.6mcg per kilo of your weight per day

Roughly where in U.K. are you

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

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

Essential to also test vitamin D, folate, B12 and ferritin and maintain GOOD levels

What vitamin supplements are you taking

[Lucy___ in reply to SlowDragon]

Problem is that I just don't think I can afford to see anymore private ones and nearly every single private one I've seen have completely dismissed my low T3 and T4 and none have even wanted to put me on levothyroxine.

The only endocrinologist who's ever wanted to put me on levothyroxine is the NHS endo who's released me 🙄

So even if I can find money to see someone, is it going to be another waste with them saying my T3 and T4 are fine?

I mean, maybe they are because they are worsening on the levo so maybe I shouldn't be on it and upset the status quo?

Maybe my body is just meant to have low T3 and T4?

My TSH leapt from 3.2 to 1.1 on 25mcgs but lowered the T3 and T4 so if I go upto 50mcgs is my TSH going to end up going hyperthyroid as it jumped so much on such a small dose of levothyroxine.

I have substantial heart problems and I really cannot run the risk that levo is going to bring on NSVT in me as other medicines can do this.

I genuinely don't know what to do and have no where to go to ask.

I'll keep taking the 25mcgs for the meantime but does that mean I'm just going to get worse and worse?

I need an endocrinologist who will probably help me and I can pay for that privately but I can't afford to keep seeing doctors at 300 quid a time that say my thyroid is fine.

My vitamin levels are all ok.

My vitamin D has jumped from 46 to 132 and my ferritin has increased a little and now around 65 I think. Vit B12 has always been good.

I take the sprays , vid D and K and iron as I can't tolerate tablet supplements due to side effects.

I'll have a look through the list and see if I can find someone.

I wanted to go to Miles Levy because his colleague Trevor has been saying some wonderful information on the pituitary site about T3 and T4 but last time I checked, I couldn't see Professor Levy for months.

[Lucy___ in reply to SlowDragon]

I'm in York but can travel the country

[FancyPants54 in reply to Lucy___]

Have you considered trying to find out if the NHS endo. who put you on medication will see you privately? Or ask him to put you back on his NHS list? He will be horrified if he could see what's happening.

Low T3 is not good for the heart. The heart has a lot of T3 receptors in it and needs a good reliable feed. So you can get problems with too much, but also too little.

[Lucy___ in reply to FancyPants54]

I'm really really frightened because I had a long run of non sustained ventricular tachycardia last week. Could that be connected?

What do I do?

Come off the levo and let my body make it again or increase it to 50 mcgs myself.

This might kill me

[FancyPants54 in reply to Lucy___]

50mcg is still considered a starter dose, but of course I can't advise you regarding your particular condition. I have permanent Afib, but that's much less serious. Do you have a cardiac nurse you can speak to? How about your cardiologist? In theory a cardiologist should understand the need for T3, although mine didn't and told me some scary rubbish about it that frightened me half to death at the time. He was so wrong. He has since retired and gone private!!! His replacement discharged me from clinic so I've not been reviewed since 2020. Rubbish. I've had to ask to be referred all over again because I have some concerns and I need to see a cardiologist about them. Hey ho!

I would see if I could speak to your heart team about this if I were you.

Then if they can reassure you but not help in other ways (I'd hope they could give your GP a right telling off!) you could cut a 25mcg tablet in half and increase by 12.5mcg at a time if you wanted to be ultra cautious.

[Lucy___ in reply to FancyPants54]

Would that dose be enough to start increasing it though because the 25mcgs has decreased it so I don't want to take more and find my levels drop even further. That's what's frightening me so much

[FancyPants54 in reply to Lucy___]

It won't increase it, but it's a cautious way to increase slowly. You could do 12.5 for a couple of weeks to make sure there was no reaction and then up to the full 50mcg for 4-6 weeks before testing.

If your FT3 continues to drop on that dose it's still too low for you. But you can't jump up more than 25mcg a time.

[Lucy___ in reply to FancyPants54]

Thank you, it's just like absolutely everything in this - frightening. I'm terrified of how bad I feel. Terrified

[FancyPants54 in reply to Lucy___]

Being low on thyroid hormone means you have flat batteries and you can feel terrible like that. I do! What I meant was raising the dose by 12.5 won't raise the T3, but should slow down the decrease, ready for the next increase.

How did you feel and what were your blood levels before you started Levo?

[Lucy___ in reply to FancyPants54]

Ah I got you. I definitely had more energy then. My energy has declined and declined and declined.

My TSH I think was about 3.2 when I started with a T4 of 16 and a T3 of 3.7

My TSH now is 1.1 and T4 is 14 and T3 is 3.1

Hence why I'm getting a bit frightened but I will add in the 12.5 tonight and do that

[FancyPants54 in reply to Lucy___]

The lower the TSH goes the less it asks your thyroid to produce more hormone, hence the drop in levels. So you will need to over ride that loss of TSH. It's odd it fell down there so fast. But it is what it is and right now you either need to stop it completely (but it will take a while to recover and you will feel possibly worse) or keep going.

Do you have access to a cardiac team for a chat about it?

Do you normally take your thyroid medication at night? if so, what time of day did you do the blood test? How long from the last medication was the blood draw?

[Lucy___ in reply to FancyPants54]

My TSH in November after I'd been on the levo a couple of months was 1.8 so it went from 3.2 to 1.8 to 1.1. The only thing is that this test was done in the afternoon so potentially if it'd be done in the morning, it might have been closer to 1.8 like November.

I have a cardiology appointment tomorrow morning actually but they are (term redacted by admin) useless so I don't expect much help from them.

I take my meds around 2am so I took it at 2am then had the bloods done at 5pm so 15 hours later

[FancyPants54 in reply to Lucy___]

1.1 was a good place for a TSH. TSH is highest in the morning and drops off a lot during the day to lowest in the later evening. 5pm was a low point so might not be where your TSH spends much time and could be worrying you unnecessarily.

But we really need to allow 24hrs between last Levo and blood test so you might have had slightly lower FT4 and FT3 if you had done so.

Whatever the slight adjustments the timing had though, you need to increase your dose. I hope your cardiac team surprise you this morning and are more competent than you expect.

[Otto11 in reply to Lucy___]

I’m in York too. I see Dr [ redacted name 1 ] he is lovely. The previous Consultant Dr [ redacted name 2 ] discharged me after being under medicated for years. He increased T 4 dose a few times but then unexpectedly discharged me with a phone call. He retired in 2022 & I got re referred. Maybe you can get re referred.

[arTistapple]

There is a cardiologist in York who writes about the heart and thyroid hormones. I see a cardiologist (an eminent professor) in a world wide famous ‘heart hospital’ who clearly knows nothing about the connection between heart and thyroid. I can’t remember the name of the York cardiologist at the moment but he should be easy enough to find. I considered trying to see him. However, even those who write about the connection often seem to only be paying lip service, so often disappointed. I have seen an endocrinologist who wrote a fabulous paper on the connection but he also refused to treat until after cardiology had their way. They want to give me stents which is entirely unsuitable for my heart condition.

Entirely understand your fear. Heart stuff definitely does that.

It’s all infuriating. A lot of it down to ignorance but a lot of it is ‘political’. There are some real deadheads involved in endocrinology and it’s surprising that such a well accepted connection between the two issues is so overlooked.

I think I am saying if you can at least see this cardiologist who is happy to write about the connection, it might be helpful.

[arTistapple]

Dr [ redacted doctor name ], York. If you see him and get somewhere I would be happy to know how you get on. I am still considering him for myself.

[helvella in reply to arTistapple]

arTistapple,

I have edited your reply because we cannot name doctors.

If you wish to help the person, send them a Private Message (also called Chat) with your information. (The poster might already have asked for Private Messages.)

This also applies if you want to name doctors or practices even when not specifically asked.

And it applies across all health professionals - including alternative practitioners, and all other forms of therapist.

Simply put, do NOT name doctors or other practitioners on the forum.

Guideline 30 applies:

30. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.

healthunlocked.com/thyroidu...

[arTistapple in reply to helvella]

Apologies. Lost my head there trying to help.

[serenfach]

I feel for you. The ignorance and political grand standing is putting us at risk. They dont care.

Is finding T3 privately an option? You could try just taking a smidge for a week to see if this calms your heart down. The heart is the first organ affected by low T3. Others get their T3 through Roseway labs, but I take NDT from Thailand, so have not tried this option.

Sending a warm hug, thinking of you.