Update

[lau99]

Hi all, hope you have been well and are continuing to enjoy the warm weather. Firstly I wanted to thank you all for all the kind and informative responses to my last post - honestly, finding this forum has been the best thing that could have ever happened to me on my thyroid journey. You are all a source of great comfort for me, particularly when it becomes difficult to cope. 💕

As you might know from reading my previous post, I had two endo appointments back to back on Monday and Tuesday respectively - the first being an NHS appointment, and the second being with my private endo. We all know how the first one went...but at least I have some T3 now. My private endo (being considerably more sensible in my opinion) acknowledged that it isn't unusual for my TSH to be suppressed given my health circumstances, and said that it would be wiser to focus on my T3, T4 and vitamin readings for more clarity, in addition to my female hormones as they might give better insight into the reasons for my symptoms. For what feels like the first time since having the thyroidectomy, my T3 and T4 are finally within range after having added 25mcg T3 to my 150mcg Levo for the last few months, although he did note that they are still quite low at the very bottom of the range, and could stand to be a bit higher.

This again is a bit unusual, considering just how much hormone I'm taking. I was also aware of this, and so I took it upon myself a couple of weeks ago to take a 3 hour long at-home lactulose breath test, to rule out any suspected SIBO that might be interfering with the uptake of my medicines, and nutrients from my food, along with potentially being the culprit for some of my more unpleasant symptoms, e.g. constant severe bloating, constipation, water retention etc. It came back that I had a resounding positive result (despite being told by the NHS multiple times over a year ago that it was "highly unlikely" that I could have it, so they refused to test it. Also, my NHS endo on Monday suggested that I should just take laxatives indefinitely to solve the gut problem and made it seem like it was somehow my fault for having a "sluggish bowel"...). Likely due in part to the SIBO, my vitamin levels are unsurprisingly low, despite eating a balanced diet. Again, the NHS has previously refused to test for them.

Here's what I suspect might have happened to start all of this (though of course, I'm not a doctor, so who really knows): I was sent home post-thyroidectomy with too low of a dose of Levo (and no T3) which I took for about 5 months before complaining to my GP of hypo symptoms, namely constipation. She then increased my dose after seeing from my bloods that I was indeed very hypo (TSH 10, I believe), but by then, the chronic constipation had already begun creating SIBO, which explained why nothing seemed to shift my symptoms. My thyroid continued to be poorly treated as well, making matters worse, and the bacterial overgrowth has been preventing me from being able to absorb anything properly, leading to low vitamins, poor thyroid function, and further exacerbating my symptoms. Just a big mess, really.

Currently I am waiting for my private endo (who is also overseeing my apparent gastrointestinal problems) to get back to me as far as antibiotics and instructions on how to get rid of the SIBO, and I have also been sent home with a long list of supplements to take until my SIBO clears (fingers crossed...) and I can start absorbing nutrients again. If the bacterial overgrowth isn't wholly responsible for my main symptoms, we will then start to look at my female hormones as well.

I really hope we're starting to get somewhere...this is all so long and draining, but it seems like I'm hopefully getting some answers now.

[NIKEGIRL]

Wow. What a difference a day can make. I would keep that private Endo. He earned his money that day. I am so happy for u that at last you have answers and answers that actually support what you have been saying all along and answers that actually make sense. You have made my day. Whoop whoop to you Lau99. You have to be happy with that outcome. I am hoping it’s the answer you have wanted and needed and at last someone is looking into this matter rather than just fobbing you off 🎉🎉🧸

[lau99 in reply to NIKEGIRL]

Thank you so much, Nikegirl xxx I'm so touched to hear that. 😢💕I really hope that this is the right direction, but at least it seems he won't give up on me if it isn't x

[NIKEGIRL in reply to lau99]

And that’s all you are wanting and needing. Someone who won’t give up on you. I hope u see some results soon and start to feel better

[greygoose]

That private endo sounds like a real gem! Definitely a keeper.

[lau99 in reply to greygoose]

I was certainly surprised and relieved to hear that he was actually listening to me and seems to want to get to the bottom of things...it helps that he seems nice, too If only he wasn't quite so expensive 😅 x

[greygoose in reply to lau99]

Ah There's always a snag. But a lot of people have paid an arm and a leg for a private endo and found s/he was just as rubbish as an NHS one. So, at least you got value for your money.

[lau99 in reply to greygoose]

Indeed, I'm still very grateful nonetheless I don't mind spending this amount of money if it means I can be well enough to do all the things I'd hoped to do in my twenties x

[greygoose in reply to lau99]

Exactly! Good health is priceless.

[pennyannie]

Hey there Lau :

So, when you crossed the county line - do they were stetsons, like in the cowboy films ?

Seriously, I'm so relieved and was staying up late ( for me ) last night wondering where you were and what had happened.

So common sense prevails, at last, outside any joined up thinking from within the NHS :

An absolutely ridiculous situation, and yes, as you say, thank goodness for Thyroid UK and this amazing forum.

Is it worth considering liqud T4 in the first instance ?

Do you have a time scale on resolving the SIBO ?

So happy as I think you now have the medical support that we all deserve, to turn things around and get your life back on track.

[lau99 in reply to pennyannie]

Oh Penny, that makes me feel so cared about that you've been thinking about me...it is quite silly that it's had to even get to this point, but at least we might be getting somewhere! The NHS endo I saw said that it didn't make sense for me to try liquid levo since my TSH seemed to respond to varying doses of Levo 🙄 I forgot to ask my private endo about it though, so perhaps it is a possibility. He said that if it is the SIBO that's messing with my absorption, it could be that once my gut is healed, I may do fine on just Levo by itself, but time will tell, I suppose.

I'm still waiting to read the detailed report he is due to send me regarding the full SIBO treatment, but hopefully it shouldn't take too long if I can keep my thyroid levels stable and my gut moving while undergoing the treatment so that it doesn't come back.

[pennyannie in reply to lau99]

Is this the endo at Taunton in mentioned to you ?

I think the fact that he is undertaking all your health issues is a bonus - and not having to see another medical professional has to be to your benefit.

Let's face it, it's all related and once your stomach issues are sorted, your core strength restored, metabolism and optimal medication will be found and you will feel a million times better.

You have been on an unbelievable hard journey this past year - hats off to you .

So, with a bit of luck, this now thinner, fat lady will start practising her singing scales.

P.S. Was there any talk of any of this medication coming through your NHS primary care doctor ?

[fuchsia-pink]

Great news , Lau99, that you FINALLY have someone in the medical "community" fighting your corner. I'm so sorry it's been such a battle to get to where you are now.

This latest endo sounds a "keeper" - so hope you find your health improving and enjoy the summer x

[lau99 in reply to fuchsia-pink]

I know, it's definitely been a really tough journey to get to this point...I really hope you're right. It's only thanks to lovely people on the forum like you that I've been able to stay strong enough to be persistent this long xxx I hope you are well x

[nellie237]

😊