Very unwise?

Please can you help. I was diagnosed with an under-active thyroid 12 years ago age 40. Frustratingly, have other symptoms to manage too (I have coeliac and I am under investigation for a life time lupus / sjogrens type) autoimmune condition. I feel really cross with myself that I have blithely taken my thyroxine every day (between 75-100mg) every morning without question but I just feel so ashamed having so much wrong with me.

However, all my joints have deteriorated ( my rheumatologist has started me on Plaquenil) yet I get terrible fatigue and often feel shaky and light headed with a terrible night time thirst(sjogrens??).

My fasting bloods were fine as was a random blood test, which is a relief as I have strong family history of diabetes and my dad died of thyroid cancer.

Am I foolish having not recorded my thyroid Results all these years? Could my worsening symptoms be problems with my thyroid despite my GP saying they look ok?

I don't know much about what to ask for but my recent results were:

TSH 0.1

T4 20 ( I think the range is up to 22)

Ferritin has ranged from between 240 last year ... Down to 160

Vitamin D3 after 6 months supplementing of 400iu was 41nmol

Please could someone tell me exactly what I should be asking my GP for. No one has ever offered to measure my vitamin B 12 either. I am a teacher so I am not stupid... But each specialism won't make all the holistic connections.

Thanks in advance


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4 Replies

  • Hi you have a lot on your plate, the first thing, is if you can tolerate Plaquenil, many can this is a good move, but be aware it takes many many weeks to work, but it good for severe fatigue. I can't tolerate it, but my daughter who has Lupus can and it has made her very much better. As you have a good detective of a Rheumatologist there, also get them to check you for Hughes Sydnrome, it is a very typical set of diseases in a trio. Hughes Syndrome, Sjogrens and Thyroid, and some patients have Lupus also, although it may be you don;t have Hughes Syndrome, but as they are in a testing phase with you, they could do these tests:

    Believe me you are not unwise.. it is very difficult joining the dots with this sort of profile. I have Lupus, Sjogrens, Hughes Syndrome, Psoriatic Arthropathy and also a slow Thryoid... It took years to work it all out!

    Mary F.

  • Hi You have common autoimmune diseases, Caeliac and Sjogrens/lupus. These often go with autoimmune thyroid disease. Nothing at all you could have done to stop these develop, quite likely you will gradually develop other autoimmune disease too. There are many, cannot be predicted, just diagnosed when they appear and mostly treatable, some not.I have a lot. . Thyroid seems Ok ,although T4 is a little high. What is your Free T3? That is just as important. There is also antibody test for thyroid, shows if it is autoimmune etc.If you feel your thyroid is right, it probably is, but always bet to make sure with all the correct tests. it often gets worse with age, not retests always important.You should have a Diabetes test annually, symptoms start similar to thyroid and is autoimmune and hormonal. Also iron/ferritin needs to be well in range., B12 + foliates ( autoo immune hormonal, needs to be high in range, likewise vit D. If the vit D is below range ,or low, then a calcium test for corrected calcium before any treatment, ideally under an Endo, if not GP, script. This is important.All these tests should be done annually. Always ask the receptionist for a print out and keep.

    Best wishes,


  • Thank you both for your comments, I appreciate it. Actually i do have another autoimmune condition it is called lichen sclerosis and is often found with underactive thyroid disorders. So as you can see, i have quite a lot to manage.

    Does anyone else here feel bogged down. I have struggled for years to get a diagnosis for my joints and rashes and they are still vague about it as the blood tests dont show any anti bodies. However, i have tolerated the Plaquinel well and it has really stabilised my joint issues. Does anyone else feel a sense of shame? I cant shrug it off.

  • Hi Bestbuddy, I share your experience of feeling helpless in face of all the different symptoms and not knowing if they are all connected or in fact something totally separate. I had a retinal artery occlusion (unrelated to thyroid) and saw a brilliant stroke consultant who listened to me and initiated all sorts of auto-immune tests which fortunately came back OK. So I think a lot has to do with the awareness and concern of the doctors, which is not encouraging. Like you, I have lichen schlerosis which was only recognised after years of pain and discomfort. Everyone (GP, Gynaecologist, and Menopause specialist) told me it was age and post-menopause atrophy. I found info on the internet and took it to another GP who agreed and prescribed steroid ointment. Relief!! Don't feel ashamed. But don't neglect yourself - coping with full-time work and feeling constantly unwell is far from easy.

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