ME & Thyroid symptoms: Hello I've had ME for 30 years... - EDMESH

EDMESH

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ME & Thyroid symptoms

AWoody profile image
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Hello

I've had ME for 30 years and am lucky because it is mild so can keep up a relatively active lifestyle provided that I go to bed by 9pm every week night, don't have too stressful a job, and I don't schedule too much to do during a week/weekend. I know all the symptoms which indicate to me that I'm going into a "slump" and am fully aware of how my body "works".

Last June I noticed a lump on my neck (thankfully not cancerous) which turned out to be a goitre. At the same time I started with symptoms, of which the extreme breathlessness and muscle weakness (I struggle to lift 3 dinner plates out of the dishwasher) were the most debilitating. I have seen my doctor, an Ear/Nose/Throat Specialist, and a Thyroid Specialist. It is agreed that I have an overactive thyroid but the Specialist says that the symptoms do not relate to my thyroid and offered no explanation about what they may relate to, did not review my medical history nor examine my lump. I have had numerous blood tests for a variety of conditions that might bring those symptoms but all have come back okay.

Apologies for the long winded explanation but it helps to provide a picture for my request as I seek to find answers. Does anybody else either have this combination of ME & thyroid or know of anyone? I'm trying to find a thyroid specialist that has awareness of the effects of an overactive thyroid in ME patients.

Any help gratefully received. Thanks

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AWoody
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Brendanaylor profile image
Brendanaylor

I've me also a goitre with three lumps on I'm waiting a biopsy ask to see ent specialist and get goitre seen to

Clw58 profile image
Clw58

Hi. I have had ME since 1996. Like you I can lead quite an active lifestyle if I'm prepared to put up with the pain and relapses which aren't as bad now I manage exercise better! Like you my thyroid is also s proble, going from under active to normal and back to under active. The ME nurse suggests that ME patients often have the combination thus suggests low dose thyroxine.however my Dr chose to ignore the ME clinic so I'm still not being treated. So yes it is common to have thyroid problems alongside ME. Hope you get better luck than me getting the right treatment.

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