Thyroid UK


I feel so lost and lonely and lost all hope..I feel too complicated to ever get well,I have severe m.e for 22 years and my amazing husband has left me and I'm struggling to cope,I'm trying very hard but nothing's working,I've been on hc for 7 years and I'm trying to come off it to do the saliva test so I can see where I am for sure,I spend weeks in bed unable to function and feeling alone and hopeless,I've tried thyroxine for 2 years after my tt and went toxic on it so tried up too five grains of erfa and still my levels wouldn't increase...I feel like a little hampster on a wheel,the dr said having an under active thyroid wouldn't cause such anxiety,Im now trying wp but I can't cope much longer my bueatifull daughter who is a courageous transsexual said yesterday she can't cope with me,I'm scared,I've sold stuff to pay for help and hope but I'm drowning,I've gone gluten free and for a couple of years but that hasn't helped... I have a small putuitery tumour and I'm trying to wean off of seroxat which I've been left on for 20 years...I'm living in crisses every day and feel a burden too my children..I can't function at all physically or mentaly I can't think straight I feel so spaced out and desperate and scared,I started buying drugs from Te internet for anxiety as I wake early shaking with it..Is there any hope? I've spent thousands over the years seeing different people but nothing works for me,I want to shine again and not live in terror.thank you for reading such a horrid tale of desperation but I'm reaching out for hope.xx

6 Replies

Welcome to our Forum Tanyaking

I am very sorry that as well as struggling with your ill-health that your husband has left you. That's a terrible blow. Some people cannot cope with another's ill-health and if we are having treatment from the doctor they don't understand why we cannot get better and that each and every day is an awful struggle.

First things first. Make an appointment with your GP and ask for a Full Thyroid Function Test, Vitamin B12, Vitamin D, iron, ferritin and folate. Get a print-out of your results from the surgery with the ranges (ranges are important as labs differ). Ask your GP to request a T3 in your thyroid tests and also antibodies but I know some labs don't do T3 it if your TSH is in the normal range.

When you ask a question when you come to the end you will see 'For everyone' or For community. Press community if you want to keep your post private, otherwise it will be seen on the worldwide web by anyone else and cannot be retracted or changed.

Best wishes.


Tanya - I've sent you a PM.

Yes, you can improve, but it's a long, rocky, bumpy road.

Two things to bare in mind - one is that what works for one of us doesn't for another, so you have to be prepared to try things and change.

The other, if you don't already, is to get into the habit of always asking for a print out of all results, with ranges.

As you have pituitary problems it's very likely that you have thyroid/adrenal/sex hormone issues. So you will need a range of tests.

Get all the tests Shaws mentions below. Then the saliva test, which you already are thinking of. This measures your cortisol and DHEA, but you should also ask your doctor for an aldosterone test if possible.

Does your blood pressure drop when you stand? This is classic indicator of adrenal problems and if you have low blood pressure you might find fludrocortisone helps (not hydrocortisone) but DON'T take it without having your aldosterone tested first.

You might want to consider having your sex hormones tested too as pituitary can throw these out of balance. There are probably other tests too, but what I've found is that you have to pick out the imbalances and work on them one step at a time.

High doses of NDT won't help you if your adrenals are struggling. So prepared for a long road, fasten your seat belt and settle in for the ride. You can improve, but you need to get as many tests as possible done first so you know what you are up against.


Hi Tanyaking, So sorry you are having a terrible time, you have certainly come to the right forum for help, the advise I received from these knowledgeable caring people gave me a new life,!


Tanya, just want to express my sympathies. The UK seems to be notorious for poor treatment of thyroid conditions. Is the h.c. you mention, hydrocortisone? Seven years is a long time to be on that so I hope it was a low dose. If not, it could be some of your problem. I would think a cortisol test would presumably reflect a high level.

I don't know who the people are you were seeing but it seems you need someone not saddled by the NHS and who understands hormones. But if you can get the tests that have been mentioned maybe we can makes heads or tails of it.

Perhaps these will help.

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Don't give up. This forum will be of so much help to you and give you info that you will not get anywhere else. Hang on in there we are thinking of you. x

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Don't ever feel ashamed of asking for help. I and many of us here have been through very similar situations, and I had more help here than in any doctors appointment. Hang on there. Try the advices here. I'm sending you lots if good energy.


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