New prescription of ERFA with levo decrease

[Opal79]

Hi everyone I've recently had my first consult with a recommended Endo on TUK list and also some people in my local thyroid group. Mostly good reviews but one person unhappy with him.

He's putting me on NDT as says I'm not converting FT4 to FT3 as I suspected. So sorry its so long, I've tried to ask some questions first and background info after incase it matters! Am so foggy so sorry its abit chaotic! Any info on any of these Q's would be gratefully recieved if poss please? 🙏

He wants me to reduce levo from 125mcg to 50mcg and also start NDT 30mg which I understand isn't a high dose but I'm OK with that to begin. Then to see him after 6 weeks and possibly titrate further.

Q. Hoping this is a good starting dose please?

Q. I've seen some people say private consultants will go over 10mcg T3 if needed and some say they won't. Wondering about people's experience here with that please especially with Peof S if ok?

(Either way if I need more than 10 I will cross that bridge later, at least I'll hopefully feel abit better than currently!)

I haven't started my NDT yet as I'm with Benenden health and to be covered you need tests to diagnose first (I have to self pay treatment tho), then only one follow up consult. So he agreeed to do it this way round. Any future bloods will be back to Medichecks somehow! I'm also still talking with pharmacy re med suitable for my excipient allergies.

I also asked for a cortisol test and he said yes so I've got a blood test Monday along with thyroid functions, ferritin and D. I wanted it checked as sleep is awful and I'm so stressed, being rehoused from mould but long compensation battle before we move, also have a little fatty lump thing top of spine / bottom of neck past few years which I know can be a sign of cushing's disease.

I'm hoping it's not and just bad posture from being slumped over, on phone too much from being largely housebound the past few years but I wanted to check seeing as these bloods are free under my cover!

Q. I had read that taking NDT without knowing what your cortisol is doing can be dangerous, but not sure how credible that info is. Wondered if anyone happens to know please?

(Also I think I read serum blood test isn't as good as a saliva test but this is all they offer and I can't afford a saliva test at the moment).

Q. I don't know much about cortisol testing but looked through another group to get an idea. My bloods are booked for 8.30 am so a good start?

Q. Also are there any vitamins / minerals I need to stop ahead of the test re. cortisol?

( I self inject B12 every other day due to Pernicious Anaemia, I also take high doses of folate, D3, K2, magnesium to support this, I also take probiotics, plus iron but have stopped that ahead of ferritin. I'm up to speed on thyroid and vits testing protocol, it's just the cortisol I'm unsure of).

Thanks so much for reading if you got this far! 😊

Background info incase needed -

I have been on 125mcg levo since Jan - had been 100mcg all of last year (dx hypo June '22) but suddenly felt worse, TSH rose and put on loads of weight for no reason and abit more hair loss since last autumn. GP upped to 112mcg in Nov which did nothing at all with symptoms of TSH. Weirdly past 6 years been quite underweight given my whole life struggle to lose it. Think this was due to undiagnosed Pernicious Anaemia and now I'm treating it the past year, albeit slow recovery seems thyroid is showing more symptoms and they do overlap too. Endo agreed this is likely.

In March got my TSH to 0.69 (couldn't afford FT4/3) but I had ectopic heartbeats, had them subtly on and off for years and pre hypo dx 2 years ago but nothing like this. Partner called an ambulance, had an ectopic on ECG but was more repetitive before they arrived. I had to go to A and E - bloods 'normal' and ECG too. Palps continued so asked GP for a halter, still not happened however she did refer me to cardiology, I shouldn't be waiting beyond Sept now but we'll see. I suspect its all thyroid but wonder about B12 too as I'm recovering v slowly from that (I also have M.E and MCAS).

So...I spoke with Thyroid UK following A and E and I decided to reduce levo to 118 and my palps calmed quite abit after a while. 3 weeks ago I took my levo down to 112 as I defo reckon I need more in winter and less in summer and my cycles are very up and down according to dosing and have been for about 10 years (I have hashi too and suspect that was for decades).

Anyway, on my letter from the Endo to GP he only mentioned the 125mcg which is what GP still thinks I'm taking, but I did tell him briefly my own reductions. Will see how tests look Monday regarding my own levo reductions and now cycles are abit better hopefully.

Also I'm 45 and we've not been successful trying to concieve the past 8 years and thought I was peri but it's gone on for many years now, fertility tests showed I was hypo 2 years ago. I'd asked for fertility tests before I was 40 and told to wait, little did I know they stop IVF on NHS over 40, so fertility tests in '22 and '23 were kind of redundant! GP at the time (since left) said those bloods were good, and from what I can find out in my research she was actually right but ofc now my age is really against me and I'm still not optimal with thyroid yet 😔 New GP since thought levo couldn't cause palps!! And they haven't made the connection between thyroid and my uterine fibroid either of course 🙄

Thanks SO MUCH if you read all of this! 🙏

[YoginiDancer]

What a crap time you've been having! I'm wondering if the palps are anything to do with Levo at all? You don't mention other symptoms of over medication with Levo such as overactive mind (racing thoughts) fast speech, not sleeping (kind of like ADHD symptoms). In the absence of other hyper symptoms, the heart might need to be treated as a separate thing. Yet another doolally thing to be looking do huh?

Yes 30mg (half a grain) is a good starting dose.

I found when taking NDT for the first time that I could see the world differently - the colours are brighter, everything sharper - like I had new glasses. My thinking immediately got sharper and I slept much much better (I'm an insomniac so it was a miracle). Don't want to raise your expectations too much but if you can't convert, you body will be desperate for the usable Thyroid hormone and it will thank Mumma for getting hold of it ASAP!

[Opal79 in reply to YoginiDancer]

Hi I'm so sorry for my delayed reply, I've been really ill. Thanks so much for your reply!

I don't have any other over active thyroid symptoms, no. I also wonder if the heart may be a separate thing too. I also suspect I have POTS, plus I do have P.A so could be a number of things. I'm on a waiting list for cardiology so will see I guess.

Thanks for confirming 30mg is a good starting dose, does it seem that the levo is too low though with that in mind please? I ask as someone said to me a drop from 112 to 50 but with a small dose of NDT was only the equivalent of about 60mcg T4, so I'm worried I'll get much worse. Have they maybe misinterpreted do you think please?

That's amazing news that you felt so much better with it thanks so much for sharing, gives me some hope! Thanks again

[Brightness14]

After my TT I was started on 1000 Levo I was on this for 6.7 months before joining this site.

I asked about taking NDT and was advised to come off Levo one day and start with half a grain of NDT the next. I found I could increase every 10/14 days until I reached my correct level.

Six week wait is wrong. The Levo will stay in you body for week anyway.

[Opal79 in reply to Brightness14]

Hi thanks very much for your reply, I'm so sorry for my delayed reply I've been very ill.

Oh so did you come of levo altogether then? As far as I know he often puts people on a combination which I'm OK with so I dont mind staying on levo, as long as i get enough T3 frkm NDT, and just worried by how it's been dropped by so much with only a starting dose of NDT too. Going from 112 to 50 seems alot and someone on another group also said its not enough so combined meds only equal about 60 something mcg T4. I'm really worried this will be an issue and I'll get alot worse.

And yes like you've said especially with 6 weeks until next appt. Very concerned about 6 weeks on it. He's already written a letter to GP so I'm hoping she won't lower my prescription yet, I do feel very worried as I went private thinking it'd be easier / safer than sourcing something myself as so foggy and stressed atm but now it's doing the opposite!

Either way the pharmacy are also being rubbish so I haven't got the NDT yet, I had to send allergens to them 2 weeks ago (I have derm allergies plus mcas) and they're ignoring my emails. It kind of feels better to go it alone at this stage! Unless you're able to recommend a decent endo at all please? If that's allowed on here?

Sorry for so many questions, no worries if unanswerable. Thanks again

[Brightness14 in reply to Opal79]

I can't sorry, I live in France. I hope that it works out for you.

[Opal79 in reply to Brightness14]

No worries, thanks anyway

[Brightness14]

I should have written 100 Levo not 1000.