Years of suffering without diagnosis-can't cope any more!

I just can't cope any more. The fatigue is awful. Some of you suggested I was underactive after I posted my blood test results, with a very low in range T4.

Been back and forth to the doctor in 8 years. I'm waiting for a referral to rheumatology (for the second time, this time with more going on in my body) but it's like waiting forever. I feel like nothing will get done (because I'm still JUST in range and I've been fobbed off all these years). And I need treatment.

Will he do extra thyroid tests?

I'm utterly fed up and feel so low from feeling so fatigued most of the time, and having to cancel plans. I can't go on like this, I need recognition and treatment.

Can any one please offer some words of comfort or advice? Just want to feel normal :(


10 Replies

  • I've just had the worst summer. I put on loads of weight, had to rest for a day after every two days at work, didn't have the energy to complete half the things I'd planned and then at the end of the summer went to get a test for Occupation Health before I started uni. Although I've long since known my thyroid would fail, I didn't expect the result to come back under-active this year and my doctor debated as to whether to give me the tablets because it had only just gone under. Unfortunately, from my experience I would say the difference between just under and just over the borderline means the same thing to us, even though the doctors seem to think it is some huge threshold. I was very much still borderline in January but felt bad then. It's the feeling that you can't quite cope that is the worst thing, I would say. You just need to hang in there. Don't be hard on yourself. Your new reality is that you will need more rest, maybe an extra hour sleep per night and you will be lethargic. I also had incredibly dry eyes and had to start on eye drops. Sadly, this is what we all have to go through before they will medicate, but one day soon your thyroid will finally be kind and give up the ghost! In the meantime, don't badger your doctor with every new symptom. Have blood tests as often as your doctor will take them (mine went to 6 monthly testing once he knew I was borderline) and just take care of yourself. Resign yourself to things being a bit rubbish for a while, but actively keep happy. Do nice things for yourself. Treat yourself whenever you can. Anything that will keep you buoyant and take your mind off it is a good thing. Don't worry too much about your weight as that will just make you miserable. Focus on being happy, whatever that means to you and know that you are not alone. There really are thousands of us. xxx

  • Thank you divided for the kind words. I am resting when my body tells me to. I get 8.5 hours sleep every night and still feel really fatigued. The thing is, because I don't have a diagnosis I can't explain to people how I feel. My kids don't know how I'm feeling. I'm always wanting to go to bed before them. Feel bad sending them off to bed too early.

  • I was lucky there. I have teenagers and they didn't really notice if I went for a nap. I would start explaining to people your thyroid is borderline. Some people will know what that means and sympathise. It doesn't take too long to explain to others that the bean counters in the NHS won't let us have medication until we reach a certain point. It helped me to spin it positively and joke that it wouldn't be too long now before my thyroid bit the dust and when it did I would feel much better!

  • Thank you. You are so lovely, I'm welling up here. Your words are comforting. Yes I think I'll start telling people. Hope you're managing well.

  • Cannot tell if you have had B12,D3, ferritin and folate tested? If so what were results and ranges?

  • Hi I'm not sure if I have. Are they related to thyroid?

  • Being hypothyroid usually means that you have low stomach acid, which means that you cannot absorb nutrients properly. And low nutrients will mean that your thyroid can't produce enough hormone and your body can't use it properly. It's a vicious circle. But doctors have no idea of the importance of nutrients, so Don't bother to test, usually. So, you need to ask.

    Having low nutrients will make you feel bad, even if your hormones are good. And low B12 can cause all sorts or neurological damage and cause depression. Low iron will also mean low stomach acid. Low magnesium will affect your hearing and all sort of other things. So, it would be a very good idea to ask for them to be tested - you might have to insist a bit! And then, if you post the results here, people can advise you about supplementing deficiencies. You will feel a whole heap better when that's done, I'm sure.

  • If the nhs isn't doing for you what about a private doctor? I was never diagnosed by my GPs and suffered for decades. Thankfully I saw a private doctor who arranged a 24hr urine test, which diagnosed me hypothyroid. My GPs then prescribed NDT for me and later T3. This was stopped about a year ago as, according to the nhs, I am not and never have been hypothyroid. However, having the diagnosis and initial treatment means that I now self-medicate and buy my T3 from abroad. I would never wait again for the incompetent GP to get a blood test for diagnosis. I can't get my wasted years back.

  • Get vit D, B12, folate and ferritin tested, then you have something to go on, if they are up to scratch, self medicate, it can all be bought online. If the levels of those 4 aren't ok, supplement until they are. Lack of B12 can make you feel terrible with a myriad of neurological symptoms and low ferritin can make you feel totally exhausted. Low levels in these 4 will mean your thyroid won't work properly.

    However, your thyroid could be failing and if you're borderline you could be hanging around for years until it gets bad enough for the GP to treat, I note your TSH was last 1.74 which is nowhere near their treatment ranges and your FT4 has a lot to drop before they'll do anything about it.

    Life is too short to feel that bad any longer. Read up on here, this site is a mine of amazing information.

  • Sorry for the late reply. Thanks to everyone for the comments. I've just been told it's a 13-18 week wait for my referral. And my doc waited nearly a week to put it through. Thinking maybe to ask for bloods to be done again, and the ones that have been mentioned on here.

    Thanks again.

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