I had a '2nd opinion' visit to an NHS endo on 24/8/22. I specifically asked the endo to comprehensively test my pituitary function, as I think that's where my problems are located (low thyroid and cortisol). She did a lot of blood tests and an ACTH test. After a fair bit of chasing up I've now been copied in on a letter to my GP from her and it has scant info on results but the usual 'healthy' conclusion. I've asked for a full copy of test results and still await those. I wonder if someone could shed some light on these results and if it's possible to have such low thyroid 'naturally' - all endos keep telling me there's nothing wrong with my thyroid results. I suspect there is a pituitary problem as I felt marvellous about 20-30 mins after I was injected with ACTH. Results as follows:
TSH 0.93 (0.27-4.2)
FT4 12 (12-22)
ACTH 19.8 (7.2-63.3)
Aldosterone 159 (70-570)
No result for testosterone except a comment that it was under-range
I'm currently taking an ultra low dose of hrt as anything higher pushes me into what I believe is a hypothyroid state.
I'd be grateful for any feedback on these results before I speak to my GP.
Written by
Jamima
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Looking at your previous labs below....you are seriously undermedicated!
As a result you are experiencing symptoms and you feel under par.
Until you optimise your levo dose this is likely to continue.
While you are titrating your dose you may not feel great until you reach your therapeutic dose....it takes a long time!
You felt better when dose was increased from 50mcg to 75mcg.....this underlines your state of undermedication.
50mcg is only a starter dose...it looks as if you will need at least another increase.
Your T4 to T3 conversion looks fine
You say...
I'm currently taking an ultra low dose of hrt as anything higher pushes me into what I believe is a hypothyroid state.
You are already in a hypothyroid state/ undermedicated...that is the problem
The therapeutic benefit of Levo can be decreased when used in combination with estrogen/HRT.
This possibly explains why your symptoms are slower to resolve
It may be that if you increase your levo dose you will no longer need HRT...especially since that dose us already "ultra low"
i'd suggest you wait 6 weeks after raising levo to 75mcg and also drop the HRT....the body needs time to adapt to dose change.
Test again after 6 weeks on a steady dose
The results will point to the way forward......further levo increases
(ACTH has that effect... I felt great for about 24 hours after the injection)
In your shoes I would first want to address your abysmally low FT4 and FT3....at those levels I would be on the floor!
Also optimise vit D, vit B12, folate and ferritin to support thyroid function.
Once you have achieved that then your issues may well be resolved.....right now I think you are looking for problems that may not exist.
Your endos are wrong to say your results are fine...
They are in range but that means nothing....instead you are aiming for the point within the range where you feel well....you haven't yet achieved that. Your Frees are too low and your endos should understand this.....they are most likely diabetic, rather than thyroid specialists.
I'm not a medic just another patient who has a very complicated thyroid problem and have had to do my own research to find answers!!
Thank you DippyDame - I'm not currently medicating with anything other than the hrt. I tried levo but it eventually (around 7 weeks in) made me feel really awful - very dizzy and more tired. I think that may be because I also have low cortisol. I really don't know what to do now and the way I feel is certainly reflected in my low results.
Sometimes when we increase, the body initially welcomes the extra hormone and we may feel a little better but, as time goes on it senses that the increase was insufficient. It responds by way of ( returning) symptoms until more hormone is added and a therapeutic dose is eventually reached.
BUT....you have already been told this in earlier posts.
If , instead of stopping the dose/ T4 , you had added another 25mcg after that 7 weeks when symptoms returned, you would have felt another improvement.
This puzzled me for quite some time....but it's not necessarily a smooth progression. I had to stick with it until one day I felt better ....and had reached my therapeutic dose.
You would feel tired dizzy light headed and more if hypo/undermedicated.....yes, these can be signs of adrenal insufficiency, but not exclusively!
Unless you immediately address your low thyroid hormone levels and reinstate hormone replacement you will continue to be unwell.
Anything else can be addressed if need be after that.
Cortisol levels drop with age....mine have!
Have you actually been diagnosed by your GP as hypothyroid or are you still trying to self medicate on a stop start basis ....which will not work.
Medics tend to look only at TSH and perhaps FT4....these are inadequate markers. You must have FT3 included for an accurate analysis
Have you followed the advice Greygoose gave you in your first post to raise vit B12 and ferritin levels....suggest you re read that post..
You need to discuss all of this with your GP and very slowly start to raise your hormone levels....it may take a long time. Months even , or as in my case about 2 years....sadly there is no quick fix.
Hi DippyDame - the last results were taken from a consultant letter to my GP and I was copied in. I haven't seen/spoken to my GP in 3 years, he agrees with consultant that my thyroid is 'normal' and everything is by e-consult. Yes, my vits and iron are all good at last check and I supplement daily. When I say I felt unwell on levo I mean in a frightening way, upon standing I almost fainted a couple of times, had to hold onto walls at other times, it did not feel right. I understand the mechanism of increasing and that we are replacing not topping up, but I felt so unwell that my instincts were to stop. I have some adrenavive ii and metavive I which I'm considering starting alongside each other as I've had low across the board cortisol readings in the past and have another regenerus test to complete. This doesn't feel like just thyroid as I feel increasingly better from 5pm onwards which, I believe, is indicative of low cortisol. I also have under-range testosterone and blood sugar regulation issues.
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