Finally got some liothyronine prescribed - but why is nothing ever straightforward??

I've been a long term lurker on this site. I've learnt so much just by reading the comments on blogs and answers to questions so I can't thank you enough for that!

Just to explain, I'm not the person in my family with hypothyroid problems. That would be my husband. Except - just to explain a bit more! - my husband had gender reassignment surgery back in 2007. It's been an interesting few years. :)

I can't help but wonder how many TS folk end up with thyroid problems. My bet is it's rather a lot, but as it's dead easy for GPs to look at your issues with gender, decide you're fruit-loop and that you "must be depressed" I'm willing to bet it's very rarely diagnosed. I don't know if there are any other post-op TS's here on the forum but I'd love to hear from you if there are.

Little bit of history

About 18m after having the "big op" my OH started having lots of colds, feeling tired, cold - and had debilitating headaches. She's a nurse in an extremely busy critical care unit and during her 30 odd years in the NHS has always been one of those nurses you hope will be looking after you should you ever get that sick. She's more conscientious than anyone I've known, does no end of studying in her own time, is often late home from shifts. And of course, all that ground to a halt. She ended up having to go sick. I'll never forget the first time we struggled up to the GP to see if he had any idea what could be wrong. It was February and it was snowing heavily and people were abandoning their cars, it was falling so thick and fast. We made it to the surgery, waited our turn, finally got into the consulting room and explained what was going on, the mounting symptoms, the fact she'd been steadily getting worse over the last few weeks.

His response? "So what do you expect me to do?" Promising start, huh? Fortunately I was in a filthy enough mood by that point to say, "Well, you could write her off work for a start."

So he did, extremely reluctantly. But only for a week. So we had to make an appointment for the following week to get her another sick note. Luckily this time we saw another GP who was at least willing to request blood tests. By this time, I'd done enough Googling to wonder whether it could be a thyroid problem, perhaps caused by oestrogen dominance (she doesn't take very much but let's face it, her core physiology will always be male). It's also worth noting she only has one kidney, having had one removed after some botched up treatment in her early 20s (she's now 53) (it was a congenital growth that they didn't remove until it had destroyed her kidney - rather conveniently they lost her medical notes after that...)

Anyway. Her TSH came back at just over 4. So (having done the Googling) I knew that wasn't really normal. GP said they'd watch and wait. {{sigh}}. About a month later, OH goes back to the doctor. Second TSH is 7. The GP agrees to test for Hashis. And lo and behold, there are lots of antibodies - hello Hashis. At this point, the GP tells my OH that she will put her on a trial dose of levo - 25mcg. Funnily enough, this dose doesn't make her feel better. Neither does 50mcg. Neither does 75mcgs...

At this point, having done endless Googling, I already know that levo on its own probably isn't going to be the answer. But - and I'm sure this is familiar to all those of you who've had this battle to find an answer - my OH just didn't have the fight in her to demand further investigation. She even agreed to the antidepressants the GP kept offering, cos let's face it, by this point she was pretty low. Not depressed though - I've seen her depressed and apart from feeling so bl**dy ill, she's never been happier, now that she's living in the gender that she always felt she should be. Needless to say, the antidepressants made no difference, other than stripping her of the ability to cry or enjoy anything. So after a few months, she stopped taking those. She managed to get back to work I think only because she'd had a good rest and because she cut her hours right back and does lots of sleeping between shifts. Over the last few years she's had to have around 3 periods of 4-6 weeks off work. She hates going sick.

I kept reading. We realised that with only one adrenal gland (the other having been removed with her kidney) that she probably had less testosterone than a genetically born woman - we girlies make it in our ovaries and our adrenal glands. Well, she has no ovaries and one adrenal gland. Sure enough, the endo we were finally referred to agrees to test her testosterone levels and discovers they're very low. So he prescribes (after we did the research) Testerone patches called Intrinsa. They do seem to help, but not that much. And now we can't get them because the pharma company's stopped making them.

Fast forward to about two months ago - I could see that OH was going downhill fast, not helped by the fact the critical care unit was really short-staffed and she kept being put on nights, despite practically begging her manager not to. She struggled on for another month then caught a cold from me. I was poorly with it - she was knocked off her feet. There was no way she could go to work and although the cold eventually left, she's not really picked up since. She's been off work since the beginning of March, and it's like she's on no thyroid replacement therapy at all. The headaches are back with a vengeance - nothing gets rid of them, the tinnitus is back, her glands are permanently up, she's sleeping all the time, cold, breathless. Oh, and gaining weight despite barely eating.

We've just come back from seeing the endo. Her TSH is "normal" at 2.04 (ha ha). She's currently on 100mcg of T4. We did experiment with more T4 a couple of months ago but it didn't seem to make any difference. My guess is that she's got adrenal insufficiency and/or T4 to T3 conversion problems. Endo wouldn't hear of any suggestion that we try some prenisolone or hydrocortisone (very unlikely it's her adrenal gland (oh really? she only has one!) but "we'll try a synacthen test". However, he has agreed to let her try T3 (liothyronine) - only 10mcgs a day, but if she has no side effects he's happy for her to double that. But of course, it's a BH weekend, isn't it? So the medicine probably won't be written up as a prescription until next Wednesday at the earliest.

I guess it's a start...

Please forgive me for waffling on. I guess I just needed somewhere to vent. It's so frustrating. She used to be so fit and well, always had loads more energy than me. It's heartbreaking to see her like this - and even more heartbreaking that the NHS don't seem to give a damn. Apparently it's ok for her to feel rubbish all the time - maybe even serves her right in their view, for daring to mess with nature and have gender reassignment?

8 Replies

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  • LilyMay, what a lovely story, what I mean, not lovely that your other half is now struck by hypothyroidism, but lovely how much you love her and how much you are 'fighting' to help her.

    You are really 'clued up' and clearly very intelligent and have found a lot by yourself.

    I hope the T3 makes her feel better and yes that she can up this to 20mcg soon enough if no ill side effects.

    Out of interest, how much prednisolone has she been given? to be honest I hope no more than 5mg as that would be equivalent to 20 of HC (hydrocortisone) and taking higher doses than this may not be a good idea as then it suppresses the adrenal she has left too much.

    As for 'messing up' with nature: I am sure she's gone through EXTENSIVE counselling to take this big step in her life and that now things are better for her than before xx

  • Thanks nobodysdriving x

    No prednisolone prescribed - the consultant looked at us as though we'd asked him to prescribe crack cocaine. He actually appeared to break out into a sweat. :) But he did agree to refer her for a synacthen test so I guess we'll have to see what the results are for that.

  • HAHAHAHA 'crack cocaine' :D

    please keep us informed of how she's doing, she's got a wonderful person looking after her (you x)

    PS sorry you did say in the original post that endo would not consider prednisolone, teaches me to 'read properly' in future :D

  • What a journey you've both been on! Speaking as someone who has had depression in the past, I suspect that anyone who has diverged from what they see as the usual path is viewed with suspicion by the doctors.

    I have wondered over if there can be any connection between female hormones and hypoT because so many women (and relatively few men) are hypoT, and if seems that women in their 40s (perimenopause sort of age) seem to have this problem most.

    I'm just musing, but I wonder if hypoT is somehow exposed or exacerbated by certain tweaks in hormone production, and for all of us, hormone production is forever being tweaked by both internal and external forces.

    It can be trying when you're fighting for better treatment. I'm sorry I can't be more helpful, but I send my best wishes to you both.

  • Wow, you are two amazing people. I shared a house with a male fashion student many years ago and witnessed the long painful and courageous journey that he went on in order to become a she. I am so sorry that your OH has now got hypothyroidism, but hopefully the T3 will help her. good wishes to you both, jan x

  • Dr Ps book says major surgery can trigger hypo. Congrats on T3 - it's my next goal :) Dr Ps book is a good read if you haven't already. It's the red one on Amazon. Has she had other hormones as a result of the surgery?

  • Also here:

    thyroiduk.org.uk/tuk/tuk_sh...

    Louise x :-)

  • Lilymay your OH is so lucky to have such a caring person looking after her. I wish her well with her complicated thyroid journey. I hope she gets the medication and treatment she deserves quickly and feels better soon - I'm sure she will with your love and support and you fighting her corner. X

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