Another update on potential meds intolerance

[Incoguto]

Hey everyone,I have trouble tolerating thyroid meds despite trying different combos, even different NDT med types etc, while it hasn't been a problem before, it was smooth sailing on Armour and great increasing, until I crashed mid 2017.

Currently on 2.375 gr Armour and 5 mcg Thybon t3.

My salivary cortisol was low (even though blood was normal high). I have been prescribed by two of my endos hydrocortisone and even prednisone for a couple of months as my ACTH is also low in range. Interestingly aldosterone is double the range! Normally should be low alonside low cort, so I wasn't prescribed Florinef for low aldo.

Anyway, my family doctor and endo want me to do an MRI of adrenal glands, full body CT and potentially pituitary MRI. Sounds like fun, but yeah they want to eliminate the possibility of a tumour that could be impacting my tolerance to meds and cortisol issues.

In the meantime I'm ordering compounded testosterone cream, endo says it should help with fatigue and libido.

Very tired of these experiments, all I know is that I have issues tolerating meds, potentially need to split them and change a little. Recent trial of 8 weeks more T3 showed that I do have libido, I don't have to be pale and have more energy, but it was painful to dose with peaks and throughs, and potentially overwhelming my low cortisol a little.

I am also waiting for results of salivary cortisol from Sunday, did it before starting hydro, once again, to re-confirm previous low results.

To recap: low estrogen (patch was terrible), low iron corrected with iron iv (but did nothing to my symptoms, but at least I have nice looking ferritin lol), lowish sodium, slightly elevated glucose at 5.7-5.8, high aldosterone, low ACTH, high RBCs, low salivary cortisol and normal high blood serum cortisol, low in range RT3 (made no difference also), low TSH, ft3 ft4 in range, optimal vits and minerals.

Fingers crossed soon I'll get out of this little hypo pit, I'm exhausted!

[nickym1]

Hey, are you UK based? I know the feeling 😔 How did you get all the tests? Hope you are on the up soon.

[Incoguto in reply to nickym1]

Hey, I'm based in Poland. You do? Aw, loads of people on this fun hypo train...I did a lot of them privately here, they're cheap and very accessible. Thank you, I hope so too, and the same to you

[arTistapple]

I read this post a couple of days ago and had to leave it alone. I have terrible trouble thinking through a similar problem.

Anyway if you have not read PaulRobinson book The Thyroid Patient’sManual, I can recommend it. It takes into consideration a number of your issues. My problem could be adrenal and I find adrenal stuff very difficult to contemplate but so far his is the best explanation I have attempted to study. Mainly because he considers actual treatment, timing etc of dosages. Critical knowledge in trying to work with doctors who seem entirely unable to comprehend (or believe) the knotty problems around taking thyroid meds.

[Incoguto in reply to arTistapple]

Thank you arTistapple🤗I have Paul's book, I've been consulting with him on this. My recent discovery was that my free salivary cortisol went up with the addition of 7.5 mcg t3. So I don't think I have adrenal issues, just my dose is not right. I'm definitely hypo. I have even tried HC for a week now and it didn't feel anything. However, I've reduced some of that additional T3 and my energy is dipping. On more t3 added I felt like going through crazy peaks and throughs every few hours.

I'm sorry you're going through this too.

[arTistapple in reply to Incoguto]

At least your doctors seem to be covering all bases - expensive for you? No idea what the healthcare system is like in Poland. Here in the U.K. it seems like we are left on our own. No doctor wants to discuss anything beyond levo and TSH. It’s very dispiriting. However if we want to go down the road of antidepressants etc that is usually open to us. Madness when it’s help with our thyroid medication we need. Good luck Incoguto!

[Incoguto in reply to arTistapple]

Yes, my doctors are checking whatever they can, because I told them I'm fed up and need to get back to work and normal life. I know, I lived in Ireland for 18 years and since moving back home I feel like I'm getting somewhere because of the availability of all tests. Basically, I can walk in to private blood test clinic, ask for ft3 ft4 without an appointment and get results within few hours. I can get acth, aldosterone like that too, which wasn't possible in Ireland. Also can go for MRI without a referral. It is much better here and doctors seem to know a little bit more (but still not a lot!). It is not expensive and my insurance covers 50-75% costs. But this disease is expensive anyway. Of course, same experience with antidepressants, can have them anytime, but hormones, it's like a demon potion for them.

[Hidden]

Hiya. I also have experience of not tolerating meds lately. I am getting swelling and generalised acheyness. I am in the menopause but not on hrt due to other reasons. I have taken levo/levo & t3/ t3 only/ thyroid s/ Erfa.... all of which don't seem to suit me lately. I am just starting Erfa, but not feeling wonderful, but I need to stick with something. I know exactly how you feel, it's quite concerning indeed. All the best!

[Incoguto in reply to Hidden]

Aw thanks MapleMoose and I'm sorry you are in the same boat. I've ruled out so many potential factors. But we need to keep going. I hope Erfa does work for you. All the best to you too!