After 5 yrs of crash and burn finally seeing a private endo!

[flo1]

I have AATD which created hypothyroid 5 yrs back, obviously sick lungs and thyroid are a real binder. So last week as usual they inform me I am over dosed, this has been ongoing over 5 yr period. They normally lower me down to 70mcg from 100 mcg on levo..however as soon as the lower down I get the crash symptoms back ..gain weight , lethargic to coma status, so I have now suggested a private Endo helps me out, I have compromised lungs and this on top is huge! I have basically put up with enough garbage off the NHS and I am doing a private route referral with hope they can then sort me out and get me back to where I was pre this condition. I can but hope I hope to ask for the T3 on a private basis as nobody here up to now has either suggested this to me or even taken this more seriously. I have the middle sections in both of my lungs left I was diagnosed at end stage emphysema aged 46 ..I worked very hard to come to where I am today, if anyone has AATD please be very aware thyroid is on the spectrum and if your struggling like me to be heard go private ..I hope to feel a lot better after this referral will keep everyone posted, its bad enough I am denied a vital replacement therapy for AATD (my genetic condition) but to be denied T3 on top for me is one step to far! ..my suggestion is if your dissatisfied go private in the UK. I hope to update.

[Clutter]

Flo1,

It sounds as though your GP is dosing according to TSH. Just because TSH is below range doesn't mean you are overmedicated. If FT4 and FT3 were within range you were not overmedicated. To avoid yo-yoing between 100mcg and 75mcg your GP could have prescribed 75mcg/100mcg alternate days.

If your FT3 is low you will probably benefit from adding some T3 to Levothyroxine.

If you are prescribed T3 privately UK Mercury Pharma 20mcg will cost £258+ for 28 x 20mcg. Use your prescription to buy German Thybon 20mcg which costs €30.15 for 100 x 20mcg.

[flo1 in reply to Clutter]

Great advise! Today I called Blue Horizon for my test results to accompany me to the Endo hopefully scheduled for next week...I will be sure to update Clutter, the medical assistant at the surgery suggested alternate days on 75/100 I really need answers after struggling some 5 yrs hopefully I am now on the road to results I can but hope..if I do need a T3 I will be sure to get the German Thybon huge difference on price and of course I will be paying for this on private basis...many thanks!! .

[flo1]

Results are in from Blue Horizon, and are as follows I have a apt with Endo on Tues as a private.

TSH 0.03 (mine) Normal 0.27 - 4.20 miu/l

Free T4 is H 24.14 (mine) Normal 12 - 22 pmol/L

Free T3 is 5.16 (mine) Normal 5.1 - 6.8 pmol/L

So clearly I am hyper or so they have informed me, however there is a big problem here if they lower the dose I crash, can anyone advise? Also can anyone guess why I keep bouncing from up to down, why can't I hold this stable? I have Alpha One Antitrypsin Deficency and I am now wondering if there is a cause with AATD on this, obviously I do not want to waste money on a private endo if someone here can establish what's going on? I cant risk them lowering the drug its vital I keep healthy enough to walk and breathe daily ..weight on a severe lung patient is not a good prognosis. Will a endo be able to help me on this and come to a resolution? I really need a affirmed answer. Thanks my apt is booked in on Tues this week..I will update if anyone can suggest something would be much appreciated. .