having my annual review tomorrow and GP is coming to see me. Looking at all my past results I wonder, with them being up and down constantly, whether I am one of those whereby Levo no longer works for me and might be keeping me ill. Diagnosed back in 2005 and it's too far back to remember how I was on it over the years, I just got on with things and wasn't in the bad place that I now am. Only distinct memories I have is from 2015 when the severe anxiety hit me and has never left. Then I found this group and through the members I found out I had Hashi's after private testing with my antibodies at 4,000. From that point seeing an FD who did various tests and finding I had gut dysbiosis (common with Hashi's) , Candida overgrowth and SIBO (and treating them) and the last couple of years discovering I am sensitive to brands of Levo and T3.
Never really had any allergies or sensititivies throughout most of my life until recent years but with the above in mind I often wonder whether Levothyroxine is no longer right for me and whether NDT or something else would be.
My AD no longer works for me even after upping the dose last year so I went back down to original dose. Would like to try and titrate to another one but no way could I deal with the side effects, it's more than I could mentally and physically tolerate, especially with all these hyper symptoms I am still experiencing, it's unbearable and debilitating. Plus the AD I am on is the worst one on the planet to come off and after reading up on it so much over the last few years with the suffering it has cause others, I wouldn't even entertain trying now, so I am completely stuck in the miserable 62yr old body and mind and having tried so much (and boy have I tried), I don't know what else I can do or how my GP can help me
Not sure what to discuss with my GP tomorrow in how she can help me more, I am just pretty much left to my own devices; it's just constant suffering ALONE. Have the HRT patches to discuss in whether I may as well come off them because I am not at a therapeutic dose anyway, thanks to a private Meno specialist messing that up for me but just stayed on them whilst trying to sort my thyroid issues out so not really getting anywhere. Been post meno a few years now so may titrate off it and see what happens
I wonder also whether it's worth trying another private Endo as due to my agoraphobia I can't travel to the big hospital where they tried to set up appointments for me, or is an Endo just going to tell me what I already know and I have yet again wasted a lot of money I can't really afford
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Jefner
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Had a quick look back at your labs and it strikes me that the key to your problem is low FT3....I bet they haven't looked into that!
I'll quote my usual mantra!!!
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply.
I suspect this isn't happening....and numerous symptoms are the result including anxiety and depression
Are you"sensitive" to T3 or has it been introduced at too high a dose which upsets the system....it must be introduced low and slow
(I need high dose T3-only to function so I've travelled that road!)
so I am completely stuck in the miserable 62yr old body and mind and having tried so much (and boy have I tried), I don't know what else I can do or how my GP can help me
But have they/ you tried the right things?
No, I don't think you are stuck.....but I do think your medics are stuck because of lack of knowledge....or effort!
Has anyone pointed out that your T4 to T3 conversion is miserably low which in turn shows as low FT3?
High FT4 with comparitively low FT3 ( as you have) indicates poor conversion
You need to sort this out by adding a little replacement T3.....
But this will require a consultation with a clued-up endocrinologist....ask GP for a referral.
In addition you need to optimise vit D, vit B12, folate and ferritin to support thyroid function.
The treatment for Hashi's is the same as for hypothyroidism with the inclusion of a gluten free diet. You are likely to experience flares in hormone levels which are transient and will fall back again.
That's nothing to do with Levo not working for you....the Levo isn't helping because it's not converting to adequate T3 as explained above
Are you gluten free?
I understand it's difficult for you to travel but your GP should be making an attemp to facilitate that in order to improve your health.
Do you have someone who can accompany and support you on a visit to an endo?
I'm confident that if you were to be correctly medicated with thyroid hormones your quality of life would be much improved.
Have a heart to heart with your GP and see if she can be persuaded to make more effort to help you see an endo who can prescribe the treatment you need....that's their job after all!! They may even be able to provide patient transport if nothing else is possible.
all you have mentioned above I am aware of having learned so much from here and other places, I am pretty clued up on everything except for this T3 crap
Are you"sensitive" to T3 or has it been introduced at too high a dose which upsets the system....it must be introduced low and slow.... I have been on 10mcg since around 2016 from advice from the group because I don't convert well. I truly believe it just doesn't suit me and no idea how to get off it or what the hell to do. I split dose and every time I have some, about an hour later I get palps and feel more unwell and this isn't just recent due to going hyper, it's been happening for a long time now which is why I have never increased my T3 because I don't think I tolerate it that well and have no idea of the alternatives. I really wish I had never ever tried the stuff now, I feel it's just made my anxiety much worse and on reading up on different places, a lot of people can't tolerate it either.
As regards getting anywhere to see anyone, currently impossible with my anxiety as severe as it, I am housebound and any Endo appointment would have to be online
everyone has told me about increasing but as I mentioned, I find the stuff stimulating, I have always got uncomfortable symptoms after taking it which is why I feel the stuff just doesn't suit me and never has.
Back in 2016 I did increase when I was really obsessed about it all and tested after a couple of weeks being on it. I know it was too soon but I was desperate. My T3 ended up coming back over range on just that small increase. I know the test was too soon but even so it went over range, that frightened me off trying again
***15th August**** - after being on 15mcg t3 and 75 Levo for just over 2 weeks
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