Hi all, Am under a private Endo on a mix of NDT and levo for over a year. Endo introduced 10mcg T3 in early November.
Current dose:
60 mg Erfa (1gr)
50 mcg levo
10 mcg T3
17/01/23 - felt great on these results. Best I had in a decade.
TSH: 0.39
FT4: 11.3 (12-22)
FT3: 5.6 (3.1-6.8)
20/02/23 - felt I was slowing down. Endo really pleased with these result because my TSH was good. Adamant he wouldn't change my dose at all.
TSH: 1.1
FT4: 12.3
FT3: 5.8
I retested this week because I'm just SO tired. Sleeping 12+ hours again. Capable to doing my job but little else. My mental health has declined again.
29/03/23
TSH: 3.47
FT4: 13.4
FT3: 5.2
In 4 weeks my TSH has shot up.
Endo doesn't want to see me again for 6 months now so I have now quite a stash of meds.
I have 8 months of Erfa and 6 months of T3. Levo is what lets me down as it's from the GP but I can always buy some online.
I'd like to be able to email the endo and say 'this is what I'm doing'.
I just feel so defeated at the moment I could really use some advice please. ❤️
The problem with sending an email saying this is what I'm doing is that the endo may take fright at you going it alone and withdraw your prescriptions. As they are the prescribing Dr they are responsible and they don't like it when patients act recklessly as they see it. Even though the patient knows their body and knows what they need. My endo told me in no uncertain terms that there were protocols that had to be followed.However I was lucky because lockdown happened and I could keep doing my own thing more.
There is that concern but I can always go to another endo. 🤣
I'd be less forceful to him... more 'i'm keen to try XYZ as my next move'. I just need to take positive action again....That I'm not going to be left floundering again. Was so disappointed to be told there would be no change in dose despite me telling him I was symptomatic again. 😞
I utterly fail to see the logic in adding both levo AND T3 to NDT. Why not just increase the NDT? Always suggests to me that the endo in question doesn't really know what he's doing.
A TSH of 3.47 is way too high for someone on that much T3 - 19 mcg. And your FT3 is quite low, so you are either under-medicated, or you have a gut absorption problem. Do you always take your NDT and T3 well away from food/medication/supplements? How long was the gap between your thyroid hormones and the blood draw? Do you always have your blood draw at the same time of day?
I started on levo with NDT added in and we trialled various doses and none of them seemed to work so as a 'last effort' endo added 10mcg T3.
Endo prefers NDT to T3 as he feels it's 'gentler' on the system.
I take all my dose at once, at bedtime, and I usually eat quite early with the kids so vast majority of nights there is a decent couple of hours between dinner & meds. I take supplements in the morning.
Took dose at bedtime about 10pm. Bloods were at 7am. I know I'm meant to split my dose but I've always done bloods this way so I just carried on. I figure at least they're comparable to each other!
I did go gluten free 2 weeks ago as a trial to try and help symptoms.
OK, so your FT4 is probably lower than that. It's best to leave 24 hours between last dose of levo and the blood draw to know what is normally circulating in your blood. BUT given that you're taking NDT and levo, you're never going to get a really accurate result.
Hi Witchy,
This is just my experience, so make of it what you will!
I have trialled all the variations of thyroid meds similar to you since 2020 I’ve been on many different thyroid meds in different combos etc., initially I was responding well and soon crashed.
Yday I was diagnosed with adrenal insufficiency (which I have suspected for a very long time) after a synacthen test. As any thyroid meds in any variation couldn’t seem to sustain me. The endo told me that my hit and miss response to thyroid meds make sense now. (Altho he and I disagree about whether it is primary or secondary).
IMHO there are 2 main reasons why thyroid meds can’t reach optimal -
1. Iron
2. Cortisol /adrenals
There is also the issue is rT3. I get really significant pushback on here about whether rT3 is a problem, so I’d invite you to read up on it if you haven’t already. I have no idea if it is an issue, but independent reading on it is always the best thing to do, whether you decide it is an issue or not.
Thereafter sex hormones are also important. Vits & minerals are also key ofc, but given you’ve been on this forum a while I expect you got the memo on that one.
I only share this to say that maybe the issue is not fiddling about with doses and types - I wish I’d just gone to adrenals a lot earlier - maybe the failure to optimise is something bigger.
Hope you feel better soon x
in reply to
Hello!
Cortisol has always been on the back of my mind but I just couldn't ever justify the cost. Especially after going to see an endo and a private prescription.
I did go to my endo earlier in the year and said one of my remaining symptoms was that I has little resilience in stressful situations - like I'd start to shut down. He just told me I was an anxious person and prescribed beta blockers.
One of the first responses to a google search of 'cortisol deficiency symptoms' is "loss of resilience in stressful situations" 🙄
Well, I will see if I can get the endo to ask my GP to run the tests before I fork out. My Aunt died of adrenal cancer so watch me spiral on that all day today! 😂🤪
in reply to
Yes I hear you. The cost of the tests, the cost of the medications, the cost of the consult, the cost of a time lost when should have been spent well, the emotional investment in the uncertainty, the time spent researching… it’s all so costly.
I would argue that if your adrenals are not functioning and you have tried to wake them up with all sorts of thyroid replacement variations, your money spent on T3 and NDT in particular is being a little wasted. It may ultimately be more financially and emotionally cheaper to bite the bullet and dig a bit deeper.
Also I wouldnt worry about the adrenal cancer link. That does sound horrible! But it is extremely common to have dysfunction in the adrenal-thyroid-pituitary axis when we have thyroid disease, particularly if we are undertreated or undiagnosed for a long time.
edit: beta blockers 🙄 when will these morons learn that all our systems are connected 🤦♀️ For what it’s worth - I really doubt you genuinely are an anxious person. You sound like you’re living with a feeling of “short fuse,” a strong sign of weak adrenals.
in reply to
I'm just so fed up of figuring it all out by myself.
Honestly, the anxiety/beta blockers thing peeved me right off. It's not that I'm anxious and can't cope with stress it's that I have a physiological reaction to stress - my temperature plummets and I start to shut down.
I'm just fed up of being told that a house, marriage, job, kids, dogs is TOO MUCH for me. As if I'm expected to just give up and accept a half-life.
I'm angry and tired today. Probably best not to interact with me. 🤣
Edit: That sounded ungrateful and that's not what I meant at all. Thank you for your thoughts. I've written to my endo about testing cortisol and sex hormones and to increase my levo. So I'll see what he says. He's not back in clinic for a fortnight though so it'll be a slow burn...
in reply to
I’m not a doctor and I’ve never met you but everything you’ve just written makes me think your stress resilience is awful (as you say) because something physiological is out of balance. Given you have tried all the thyroid med variations and you still don’t feel better I’d really really recommend looking at cortisol even just to rule it out. It’s just a saliva test you’d need and it’s £90 ish. Maybe skip your next endo appt. And use the money for that?
in reply to
I'd like to get this one on the NHS if I can but it won't be until next month I don't think if I go private.
in reply to
Unfortunately and predictably the most the NHS will do is a blood cortisol level, which is not always very useful as that’s not what is free, that’s just total but still insightful to some degree. Saliva tells you what cortisol you have available/free at 4 different parts of the day (so shows you your whole diurnal rhythm). Good luck! X
It's not that I'm anxious and can't cope with stress it's that I have a physiological reaction to stress - my temperature plummets and I start to shut down.
That sounds just like me!... I did the saliva test and adding adrenal glandular seems to be doing the trick alleviating this issue as I crash less!.... I can see why DFC is leaning towards this...
I have got an NHS blood cortisol in a couple of weeks as the Endo seems to have finally looked at my private saliva results and added this on, I'm going to continue with the glandular to see if they are making any difference as I don't envisage the Endo will do much with the results either way?
No me neither, life just sucks it out of you from all directions doesn't it!
I guess every juggler drops their balls sooner or later 😩
I was trying to find some porcine but failed so had been taking 1 Pure Whole Adrenal before results came back and then once I knew I was low I've been adding Adrenavive II which is cortex only.... monitoring my temperature and things have been levelling out.
I find sometimes that it is easier to focus on the downs rather than the ups but when I stop and take stock of where I'm really at things are moving in the right direction.... more of an even keel but no va va vroom yet which is probably a frustratingly good steady route, I'm looking forward to getting my memory back which I found comes with a little more fT3, but at least I know it hasn't gone for good...yet 😅
We didn't get into this mess overnight so the long crawl back up is probably doing us more good really and think of all the wonderful things we have learned about ourselves in readiness to guide others 😕🙃
It sounds like a very similar route that I took when the NHS Endo reduced my T4 (to raise TSH 🙄) and that long slow, slowing down dragged me backwards, I put my Levo back up after 8 weeks (it was down to 25% TSH didn't budge!) I've got it back up to 72% and the slow crawl back up began ( I'm tweaking aiming for 50-60%)... one month in I added another 5mcg T3 (fT3 70%)
So I am now back to a slow but pretty stable tick over and I'm feeling the difference with the added adrenal glandular, 2 weeks till blood tests 🤞
Thankfully next Endo appointment has been pushed out another month so I can keep the control a little longer before the showdown 😅
So I would think getting your fT4 back up would be my suggestion, T3 makes a huge difference but it would seem having a reasonable level of fT4 is still necessary even with DIO2 wonk
Have just written a 3 page letter to my endo. 🤣 I'm just so tired. My TSH hasn't been this high in 2 years!
I've asked him to get my cortisol tested on the NHS and to increase my levo. ... Which I plan to do myself anyway but would be nice to have it prescribed 😂
Have you tried take more NDT on it's own. I felt well for years on 2.25 grains of NDT until they changed the formula. Split into two doses. You are on a real mix of things I just hope that you feel better soon.
I did try splitting my dose but frequently found I was missing doses so took a pragmatic decision that one full dose once a day was better than missing doses. Splitting my dose has always been a very last resort for me.
I've just started a gluten free diet again in the hopes that it might help. 🤞
Yes it could help if you have gut problems. It's hard I only started splitting my NDT after reading about it on here. 1.25 at around 6am and another one at around 1.30pm. I always felt well and full of energy too. I did notice after lunch at around 12.30 to 1pm I started to fill a little tired. So the T3 in NDT only lasted around 7 hours.
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