Thyroid UK
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very swollen & painful legs

I wondered if anyone had any advice re the swelling up of legs, and the whole body. My legs especially get so sore and swollen with prominent veins. I have a suggested diagnosis of secondary hypothyroidism, and other than the inability to shift any weight, the swelling and painful legs are the biggest problem. My endo is thinking of putting me on levo but wasn't sure if this was the answer. I am sure it is edema as it comes and goes.

9 Replies

What - your Endo doesn't know what to do!!!. My goodness the posts are going from bad to worse.

Oedema was the 'old-fashioned' way to diagnose a deficiency of thyroid hormones. You should have been prescribed levothyroxine.

Please get a copy of your blood test results with the ranges and state them.

If you feel unwell you'll have to go the A&E.


Thanks Shaws. The endos don't seem interested in the leg swelling but my daughter is about to be put on levo I think. I feel that NDT would be better for her if it is secondary hypothyroidism.


I am not medically qualified but it is really down to the preference of the person of whether NDT or levo.

If you develop breathing difficulties etc go to A&E.



Levothyroxine is the treatment for primary and secondary hypothyroidism in the UK. The swelling caused by hypothyroidism is known as myxoedema


Thanks Shaws. My daughter has just received her latest letter from her Endo with a diagnosis of suspected hypothalamic disorder and she is also wondering about secondary hypothyroidism, and wants to put her on 50mcg of thyroxine a day. Her latest bloods are TSH 1.97 (0.27 - 4.2), T4 14.3 (12.0 - 22.0). These bloods were done on 28th October in a different hospital to her previous bloods which were done a month earlier which were TSH .89 (0.3 - 4.2), T4 11.5 (9 -23). Can her TSH vary so much when she's not on any medication? Also if they suspect secondary hypothyroidism shouldn't they be giving her the TRH test to distinguish if its the pituitary or the hypothalamus which is at fault? I also wondered why they weren't testing her T3 - should this be done too?

Her legs are frequently swollen and sore but the Endos don't seem to be concerned about them She was prescribed beta blockers (Propanolol 40mg) which really made her legs much worse, so she came off them.

Thanks for your help


Propropanol can interfere with the uptake of levothyroxine.

It's good, mind you. that Endo has prescribed due to her symptoms. Many don't.

Swelling is a clinical symptom of hypo and the TSH varies throughout the day so if we had five tests in the day they would be different. It's highest a.m.

I'm not sure about the "TRH test to distinguish if its the pituitary or the hypothalamus you have to differentiate" and hopefully someone will know the answer.Doctors rarely do the FT3 test and I don't know the reason for that. When on levo they seem to think that T4 converts well to T3 and they make an assumption although many seem to do well on it..


Has anyone got Secondary hypothyroidism (problem being the pituitary or the hypothalamus)? My daughter has been diagnosed with this and the endo has put her on 50mg of levo, which she is not keen to take as it is not her thyroid which is at fault but her pituitary or hypothalamus. She has read that taking thyroid meds will stop her thyroid from working eventually through over medicating it and will end up worse.


It may be better to put your question into a new post so people will see it. Not everyone will see it in the News Feed.

Hope you have some answers soon for your daughter ....


Thanks Marz.

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