Doc stopped levothyroxine: I was put on levo 5... - Thyroid UK

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Doc stopped levothyroxine

Spacey profile image
9 Replies

I was put on levo 50 November following long-term depression and anxiety, brain fog, always cold, no periods, tiredness, aches and chronic constipation. My T3/T4 were relatively normal but TSH was 0.17. MRI showed I have an underdeveloped pituitary gland. Since then I felt a little brighter but still no periods, still foggy and I lost over half a stone (I was only 8 stone to start with, so not good).

I was back at the specialist last week and they instructed me to stop the levo immediately because of the weight loss and no return of my cycle. They took some bloods that day too.

Since then I have felt terrible - leaping between anxiety and low mood, struggling to think straight, palpitations, insomnia, dizziness and constantly hungry. I went to my GP today because of how I'm feeling. The results were back and showed my TSH had dropped further - just 0.02.

I'm at my wits end and don't know what to do. I've asked to be referred to another hospital but that could take months. Any advice please?

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Spacey
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9 Replies
mistydog profile image
mistydog

The underdeveloped pituitary is the key here I feel. Do you have your results? 

Spacey profile image
Spacey in reply tomistydog

Yes I have full blood count...and loads of other results that I don't understand.  Fed up of having various meds thrown at me and if they suggest SSRIs again....grr!

mistydog profile image
mistydog in reply toSpacey

You may not but others here might. Post a new question typing out the results with ranges and stating the above and hopefully someone will advise. 

I'm thinking secondary hypothyroidism might be your case but I don't know much about it. 

Glynisrose profile image
Glynisrose

Most people respond better to suppressed TSH as this is a pituartry hormone NOT a thyroid hormone. 

linlow profile image
linlow

Spacey you are feeling so awful because the increased level of T4 in your bloodstream has been suddenly removed.  My endo told me it can take 8 weeks to recover from this slump when my doctor did the same thing to me.  Try looking for foods high in serotonin to help you over 'the hump'.

Follow mistydog 's advice to open another post asking for help analysing your test results.  Include the range information (usually in brackets) for each of your levels if it is available on your results sheet.

Spacey profile image
Spacey

Thank you all so much for your advice, much appreciated.  I'll sort a new post soon.

Linlow - I'll look out for foods.  I also have some 5htp so may give them a go too.  Thanks!

faith63 profile image
faith63

you need to see if there is a pituitary center somewhere.  I don't know how it works where you are but, you were taken off the levo, because you have low cortsiol, most likely.  You may need growth hormone, thyroid meds and cortisol replacement, but need proper testing.  

Spacey profile image
Spacey in reply tofaith63

Thanks faith63.  I booked an apt in a specialist endo clinic in London yesterday. Will be costly be worth it if it helps.

faith63 profile image
faith63 in reply toSpacey

I hope it will help you.

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