Anyone else feel completely unsupported with hypothyroidism between NHS appointments?

[OneJadePlayer]

Hi all,

Does anyone else feel like hypothyroidism management on the NHS is just... "here's your pill, see you in 6 months"?

I've had Hashimoto's for two years now. On levothyroxine, TSH comes back "normal," but I still have awful brain fog, can't shift the weight, exhausted all the time. GP says "your levels are fine" and that's that.

Waited 14 months for an endo appointment. Got 15 minutes, was told "TSH is in range, nothing more to do," discharged back to GP.

What's really getting to me is there's zero support in between. No one's helped me understand:

• Whether diet actually matters (gluten? dairy? soy?)
• If I should be asking for different tests (Free T3? antibodies? I've no idea)
• Whether stress/sleep are making it worse
• How to actually advocate for myself at appointments

I feel like I'm just expected to take my pill and get on with feeling rubbish. Is this everyone's experience or have some of you found ways to actually feel better?
I've been doing my own research and trying different things, and I'm finally starting to feel a bit more human again. But it's been so isolating figuring it out alone.

Has anyone else managed to improve their symptoms despite "normal" NHS care? What did you do?

Would love to hear I'm not the only one struggling with this.

Thanks x

To be truthful, I went to see a private GP in the end. He has been brilliant and kicked it back to the NHS as soon as my prescription was correct

My DD went private for exactly this reason.

With the diet situation everyone is different and it’s up to you to decide if you want to try a different diet and see what works for you

I've got the opposite problem. I am perfectly well on my current dose, but every GP I have seen at my surgery wishes to reduce it and make me unwell again.

OP have a look at the Thyroid UK forum on healthunlocked(dot)com. There you will find the advice and support you are looking for.

The NHS is absolutely shocking at dealing with Thyroid issues, which are extremely common (in women mainly...go figure). You need to take your health into your own hands. Read up,.alot about your condition. Test privately to monitor bloods yourself and if you can afford it, see a private specialist.

I have this experience too. I was born without a thyroid gland and have been on the same dose since I was about 12 years old (other than pregnancy). I have no intention of reducing now when I feel well.

OP, the NHS just check my levels every once in a while and prescribe the meds. I am sorry you are feeling unwell and hope you find ways to feel better.