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LUPUS UK
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Hypothyroidism but Endo won't treat!

I am getting desperate now. Had lupus for years coping ok with flares etc now seeing Endo at salford Royal (Robinson) and he agrees

My TSH is high at 3.5 and I am VERY symptomatic in line with this but he won't treat me with drugs, says too dangerous etc! I want to take low dose to see if it helps can't live with this for much longer. Thibking of going private to see Prof Davis at MRI but aware hat will be burning bridges if I do so. Has anybody else seen him and is he more empahetic? Would greatly appreciate some advice.

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Hi Blueeyes57,

You may also want to post this in the Thyroid UK community for any input. You can join at healthunlocked.com/thyroiduk

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That's a really difficult situation, and I bet you feel ghastly. So to add a bit of detail, is it that you're not convinced that your endo is listening to you properly, or do you simply want another specialist opinion to look at the treatment options again?

At least in theory, it should be possible to ask either the endo or your GP to refer you for a second opinion on the NHS, and this might not mean leaving the care of the first one. But I know how you feel. I think I might be heading this way myself very soon, feeling terrible and with indications that my thyroid and adrenals are struggling but stuck on a very long "routine" waiting list....I do hope you keep us posted on how things go for you x

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This is becoming a very controversial area now because so many people are complaining about the NHS taking an overly rigid, TSH obsessed approach to guidelines.

Certainly I have found that any dosage lowering of my Levothyroxine, due to my now suppressed TSH, has had a horrible affect on me over the years since I was diagnosed 15 years ago now. So I really feel for you. I think we become experts in the workings of our bodies after a while so I’d say trust your instincts as you are an autoimmuner.

I now add an extra 25mcg every few days to my prescribed dose of Levothyroxine and have observed that symptoms such as stomach pain and high inflammation markers and my Sicca symptoms have reduced significantly.

It would be worth asking or even paying to get your thyroid antibodies and free T4 and T3 tested. Also it might be worth reading and printing and showing your GP relevant extracts of the writing of Dr Anthony Toft CBE - former president of the British Thyroid Association.

Also, look out for all papers on the subject of over-adherence to guidelines which are in the pipelines for iminent publication - particularly from Dr Toft.

Due to huge public pressure on the NHS I do think/ hope things will be changing here in the UK soon.

There are many expert patients, including the admins, on the Thyroid UK HU - see Paul's link. Some are confusingly confrontational about the medical profession and have too many conspiracy theories for my personal liking - and are very much in favour of people self medicating.

Others are extremely knowledgeable about the science surrounding the thyroid and give pretty measured and dependable advice I feel.

I have found an admin called Clutter’s posts and comments, in particular, to be very helpful on the few occasions when I’ve posted or read posts on there.

I certainly feel that having Lupus, Sjögren’s or RA makes the likelihood that we have autoimmune thyroid disease which urgently needs treating, highly likely.

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