I was given 50mg of levothyroxine because of symptoms and slightly raised tsh 18 months ago.
I became hyperthyroid around 7 months ago with low tsh and slightly elevated t4 and t3. I was advised to stop levothyroxine and wait for blood levels to return to normal which after 2 months didn’t happen.
I was finally seen by endo and told I had a swollen thyroid and bloods that confirm Graves’ disease.
My question is, could this have happened because I took levothyroxine or is this a predisposed condition. I have had an extremely stressful year due to family illness.
my daughter was diagnosed with hashimotos at 13 years my mum developed type 1 diabetes at 55yrs and I also have a diagnosis of fibromyalgia.
Any thoughts would be gratefully welcomed
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Flamingo6
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Please add actual test results and ranges on results before starting Levo, when on 50mcg Levo and most recent test results
Fibromyalgia is often undiagnosed Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid type results before becoming increasingly hypothyroid
ESSENTIAL to test correct antibodies
To confirm Hashimoto’s you need TPO and TG antibodies tested
To confirm Graves’ disease you need TSI or Trab antibodies tested
Which antibodies were tested
How long since you stopped Levo
What vitamin supplements are you taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Probably a bit longer after stopping Levo before testing
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - with Graves’ disease or Hashimoto’s
Autoimmune thyroid disease with goitre is usually Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
ALWAYS test early morning, ideally just before 9am, only drink water between waking and test (and when on Levo….last dose levothyroxine 24 hours before test )
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
My question is, could this have happened because I took levothyroxine
Absolutely not, no. No way could taking levo make you 'go hyper'. In fact, it couldn't happen at all. If you are in the UK, your TSH must have been over a certain level to get a diagnosis of hypo and be prescribed levo. So, your doctor must have been satisfied that you were hypo - i.e. for some reason, your thyroid was incapable of making enough thyroid hormone to make you well. Thyroids cannot regenerate so it is physically impossible that your thyroid could suddenly start making too much hormone, making you hyper.
Levo is not a drug. It is thyroid hormone replacement, the thyroid hormone T4. It doesn't cure anything, it just replaces the hormone your thyroid can no-longer make enough of. So, it looks very likely that you, too, have Hashi's, where the immune system will occasionally attack the thyroid, causing stores of hormone to be deposited in the blood making levels rise so it looks like hyperthyroidism if you don't do the right tests. And endos tend not to do the right test, preferring to jump to conclusions. Hopefully, he will eventually test your antibodies so all will be revealed!
If with Graves Disease - an Anti Thyroid drug is prescribed - Carbimazole or Propylthiouracil - PTU -which semi-block your own new daily thyroid hormone production.
As your T3 and T4 start to fall back down again the AT drug is slowly reduced so your thyroid hormones do not fall too fat through the ranges with you then dealing with the equally if not more diasbling symptoms of hypothyroidism
So - are you now taking an AT drug and have stopped the T4 - thyroid hormone replacement ?
There 2 Auto Immune disease that can cause hyper type symptoms -
with Graves the T3 and T4 keep rising higher and higher and Graves is considered life threatening if not medicated - and all the AT drug does is dampen down your immune system and ' buy you time ' while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
Hashimoto's presents with the hyper type phases - but these are transient - the T3 and T4 fall back down into range by themselves -
but with successive AI attacks the thyroid becomes damaged with reduced function and the patient ultimately becomes hypothyroid and needing thyroid hormone replacement - T4 - Levothyroxine.
Sometime when the thyroid malfunctions several sets of antibodies are found positive and over range in the blood - and so we need to know exactly which antibodies were found -
These will look like a TPO or a TgAB - results and ranges or a TRab or TSI - or maybe something saying TSH Thyroid Receptors - with a single number and cut off number.
If you care to also share your initial blood tests results and ranges - TSH + T3 + T4 - this may also give a clue as to if you are looking at Graves or Hashimoto's :
There is likely a genetic pre-disposition to both AI diseases - the question is do you have the medical evidence of which antibodies and therefore which AI disease you are dealing with ?
”I was finally seen by endo and told I had a swollen thyroid and bloods that confirm Graves’ disease.”
Endos are very often little more than diabetes specialists these days and difficult though it may be to believe, don’t alway get the diagnosis correct when it comes to thyroid disease.
From what you’ve said, I think Hashimoto’s is more likely—so it really matters about whether they did the correct tests (that’s why others here are asking about exactly what was tested).
In UK, NHS GP's are simply not allowed to initiate a prescription on NDT ( Natural Desiccated Thyroid) , and even NHS endocrinologists are increasingly unable / unwilling to prescribe it . Most people who are taking NDT need to get it via private endocrinologist , or self source it without prescription .
but as Flamingo6 currently has high thyroid hormone levels (not currently hypothyroid) prescribing any form of thyroid hormone replacement (levo / or NDT) would not be appropriate at the moment .
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Feeling exasperated ---- and all the usual stuff --tired,foggy head etc etc 
subclinical - do I need levo? 
Normal TSH, low T4 and T3
I’m new here! Stop taking Levothyroxine altogether?
Hello everyone question re Low TSH and osteoporosis 
