Thyroid UK
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Hypo or not? I think So

Hi all, I had radioactive iodine in March 2015 for Hyperthyroidism caused by a hot nodule goiter & have never felt well since. Classic symptoms of what I would consider hypo, cold, exhausted, muscle weakness, brain fog, although no weight gain. I am beginning to feel like a total pain in the backside to my poor GP, who to be fair has repeated my bloods a fair number of times. 4 weeks ago my TSH was 1.4, so by no means hypo, T3 & T4, 'normal'. I then suddenly began to feel much worse, my goiter swelled up again literally over night, I have just about lost my voice & just feel very unwell. I rang the specialist nurse at the hospital, as initially I thought i was having another thyroid storm, have had 2 previously. She took my blood straight away & in 3 weeks my TSH level has raised to 5.2, again T3 & T4 'normal'. However I now feel totally at a loss, as even though she admitted herself this was a significant shift, it was not bad enough to treat me, I have to say I am very un happy about this, as I really feel dreadful. I know that I feel my best when my TSH is 0.5. I have ordered my own blood form online which I am going to have taken again next week, I have everything crossed that has gone higher, just so I can convince them I am actually ill enough to help. I am actually considering buying my own medication, would appreciate people's thought. Thanks Jayne

4 Replies

After any thyroidectomy you need to be given replacement thyroid meds and to have a TSH of 5.2 and be denied treatment is ridiculous

"Normal" t4 and t3 means zilch we need the actual numbers

If i was in your shoes i would order NDT online and self treat

1 like

Thank you for your reply, I truly am tempted to buy NDT & just get cracking, (out of interest where is the best place to buy it from) I have decided to wait until I have my next lot of bloods done on Monday, as I am genuinely interested as to where I am now, to be fair, its just so I can waggle my result's at them, whilst telling them, 'I told you so', bit childish I know but will be worth it. Jayne


Aineey, I despair, really. You have RAI to ablate your thyroid. It works, proof is TSH >5 but it isn't high enough to treat :x Your TSH is only going up until you get thyroid replacement. Make sure you have an early, fasting (water only) blood draw when TSH is highest. I'll be very surprised if your TSH isn't high enough next week for Levthyroxine to be prescribed.

1 like

Thank you for your reply, I am very exasperated at the 'specialist' nurses response, it actually makes me very cross. I am the sort of person that will research, take control of the situation & just treat myself, but if this is the response she is giving to other patients, that still believe what the hospital says is gospel, concerns me greatly. I am going to have my bloods done again on Monday, thank you for the advice re the timing & hopefully they will be suitably far enough over 5 to warrant her concern!! Watch this space




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