Thyroid UK
87,535 members102,245 posts

Help please!


I have been very sick 2 years now, since my youngest was months old yet a picture of health during pregnancy. GP agreed hormones were at play and I was thrilled to finally see an Endo- complete waste of time his obsessed with TSH and little else.

I had an accident as a toddler and subsequently had growth hormone injections- high IGF1 levels pointed to a pituitary tumour MRI was normal. Then high FT3 and TPO antibodies were noticed several times- and ignored. Now I have adrenal fatigue off chart cortisol so treating that. Along with early onset of TED, suspected leaky gut, and now hypo parathyroidism.

Please someone tell me where I can turn or what to do I'm at my wits end I'm only 36 and feel 70. I'm in pain all day, anxious about everything, fed up and honestly don't see things improving or me regaining my life. More so for my young sons who miss their mum.

Anyone dealt with similar? How are you treating?

Thankyou ❤️

10 Replies

Hi Miki80

I am sorry you are feeling so bad and I have just put up another post and I'll add the link for you.

Many people suffer when on levothyroxine and although your Profile isn't complete, I read a previous question and note that you've been taking levothyroxine.

I don't know whether or not you've ha a new blood test or whether you've put your results in another question.

Quite a few women do become hypo after giving birth but I think you should ask for an appointment at Moorfield's Eye Hospital so that they can check your eyes are o.k. or give some recommendation.

If you've not had recent blood tests you can have them done privately from one of the recommended labs but I doubt your GP will do FT3, FT4 which are more important than TSH and T4. Have you had all your vitamins/minerals checked?


Hi Shaws

I ditched Levo for Thiroyd last year but never got above 1 grain due to all my probs. Went Moorfields last wk they were ones who picked up on visual probs I've been having since last year. Back in Nov for check up.

Those bloods were done month or so ago and I should hopefully have them tomorrow.

Don't think minerals or vits done- know I requested Mag RBC which wasn't done by lab 😡

I'm just so lost and empty, and don't know where to start with all these probs. I have no social life and hide away with my youngest as I can't face people, the questions or when at my worst- the collapsing. I have no quality of life and just feel it's passing me by as I watch from my lonely depersonalised bubble 😪


Don't worry - you aren't alone with regard to not recovering on levothyroxine. Members will respond and try to lead you onto a better path. I don't know your circumstances or whether you'd be able to source some T3 to add to levothyroxine (that works for many and maybe the GP may prescribe although I know many wont.

I hope they've done the Free T3 as that is what tells us is circulating in your bloodstream. It is bad enough looking after yourself when very symptomatic with hypo symptoms, but you've two little children to look after as well and they need their mother and are too young to understand (thankfully) illhealth.

The problem as well is due to the doctors saying we are 'normal' with regard to blood tests when we feel anything but and they will not increase levo even so they are unsympathetic in the main and will only follow what is written in black/white on how to treat us and if it's from the Associations none of us would have a reasonable life at present.

In reality, with hypothyroidism being so common, we should be offered alternative or addition to levothyroxine, even on a trial basis for six months or so but they are adamant that levo alone is perfect. Maybe for about 60 to 65% the rest being hung out to dry and given prescriptions but not for thyroid hormones so symptoms remain unalleviated.

Put your blood test results on a new question for more comments.

(I am not medically qualified and have hypothyroidism, undiagnosed and unmedicated for a long time).



I see you have tried Thiroyd so are you still taking it or have you switched back to levo. What dose of levo were you taking and what dose of Thiroyd did you begin with?


I was only on 25mg Levo and started on 1 grain NDT which I still take but literally felt like death 15 years on Levo and won't do it again. Held off buying T3 given how high FT3 has been


O.K. you are now on 1 gr of NDT, so you can add a small amount 1/4 or 1/2 dose every two weeks until you feel much better. If you watch your pulse/temp if either go too high or you feel much worse, drop back to the previous dose.

1grain of NDT has an effect of between 75 and 100mcg of levo. Before the blood tests came in the doses were between 200 and 400mcg so we are quite low these days due to the blood tests and doctors trying to keep everything in range. Also the blood tests were developed along with levothyroxine, so NDT cannot correspond with blood tests as we are taking all of the thyroid hormones, not just T4.


I can't up Shaws tried before and felt worse, have sky high cortisol


o.k. This is a link and gives good advice on Cortisol levels in general and maybe you could get a cortisol check and follow suggestions.

I was also unaware that high level cortisol can reduce thyroid hormones which we don't want.

I take Vitamin C a 1/4 teaspoon or 1/2 teaspoon daily. Half is the max on the instructions. Too much may act like a laxative.

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In your Profile, if you could a little bit of past history, i.e. when diagnosed, with what and what was prescribed and doses etc. Plus problems with NDT. It's helpful to members to be able to get a gist of background when responding :)

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Will do

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