I’ve been taking thyroxine fir 2 years since thyroid cancer was found in histology after total thyroidectomy, , but have had changes in levels of meds to quite low where GP tested it was TSH 9, now higher dose but still feel so fatigued ( ended up in hospital with hemiplegic migraine? Low levels maybe the cause?!!)
the specialist team’ i’m under, isn’t bothered about anything, now waiting 6 months to see an Endo, but taking my meds at 7 with a black cup of tea without milk- is this wrong- caffeine?
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LittleMissTeapot
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You could take at bedtime or set alarm for at least an hour before you need to get up
Take levothyroxine and go back to sleep
ESSENTIAL To test TSH , Ft4 and Ft3 plus vitamin D, folate, B12 and ferritin too
Always test thyroid levels early morning and last dose levothyroxine 24 hours before test
Start taking levothyroxine correctly and retest in 6-8 weeks
Meanwhile request GP test all four vitamins NOW
what vitamin supplements are you currently taking
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
thank you do much for your quick reply, it’s like bashing my head against the wall trying to get any answers.
I take 200mg magnesium at night yo help with migraines for last couple of weeks , so been taking thyroxine in morning on empty stomach with black tea but will change that now.
Gp adjusted thyroxine to 100mg on nov. - After coming out of hospital from hemiplegic migraine, Retested 0.75 tsh / T4 29, but no T3, on 12th dec, trying yo get my hormone tests results from dec, , but take omeprazole an hour later and iron tablets at lunchtime.
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Why are you taking omeprazole
Omeprazole is a PPI to lower stomach acid
Most hypothyroid patients already have low stomach acid
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some supplements like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away from levothyroxine
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
If you take levothyroxine at bedtime take magnesium at least 4 hours before
thanks for the info. Taking omeprazole as ENT team say I have ‘ silent acid reflux’ as have right cord palsy from surgery, and swallowing problems ( not sure about that if I’m truthful, does feel like I’m being fobbed off).
Didn’t know about testing, l might think about a private testing kit so I can do it in the morning. never knew about any of this thank you x
thank you soo much, I will work my way though the links. A new way of thinking about it all. Thank you for opening my eyes to it all. It’s going to make sure a big difference, once I get the retests and look at it all.
It's definitely not ideal. Many people find it easier to take Levo last thing at night as usually mpty stomach and not going to be eating for hours. This helps it absorb better.
What were your latest blood results with ranges? Perhaps your GP could adjust them?
Often hypo people suffer from low vitamin levels due to low stomach acid. Can you get your GP to test levels of ferritin, folate, B12 and D3? If vitamins arent optimal then our thyroid hormone can't work properly.
TSH of 9 is very high most feel well when it’s around 1.
Often if had previous diagnosis of cancer the TSH is kept suppressed to prevent any residual thyroid cells being stimulated.
With total thyroidectomy & RAI your doctors might deem suppression unnecessary but what is important it that your FT4 & FT3 are at a good level.
Were FT4 & FT3 tested? You have a legal right to your results so obtain copies of your test results. With lab ranges. Ranges vary so needed for every test.
Migraines can be connected to abnormal thyroid hormones & many report worse or more frequent migraines when thyroid poorly managed.
Do you take any medication for migraine or migraines prevention?
I take propranolol as often a migraine preventer this can lower uptake of levothyroxine & conversion (I have hyper, so helpful in my case)
Low Magnesium can also be a common factor in migraines & in those with thyroid issues, so this something to try. I drink powdered magnesium citrate at night time.
How much levo do you take? Do you alway get the same brand?
Recommend that blood draws for Thyroid function tests are taken early morning & the replacement dose should be delayed until after draw.Supplements containing biotin needs to be left off 3 days before test longer if high dose. Biotin can interfere with test.
Tea can affect levothyroxine absorption healthunlocked.com/thyroidu... . It probably is something other than caffeine but nobody has found out what it is yet. Take your levothyroxine with fruit juice for good absorption or at nighttime.
Hello Little Miss Teapot and welcome to the forum :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg :
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone hat runs your body.
We generally feel at our best when our T4 is up in the top quadrant of the range as this should, in theory, convert to a good level of T3 at around a 1/4 ratio T3/T4.
Your own ability to convert T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and inflammation, antibodies and any physiological stress ( emotional or physical ) depression, dieting and ageing can also don regulate T4 to T3 conversion.
Some people can get by on T4 - Levothyroxine only :
Some people find that T4 doesn't full restore their health and well being and find by adding in a little T3 - Liothyronine - probably replacing that little bit lost by loosing their own natural thyroid production of T3 they feel improved.
Some people can't tolerate T4 and ned to take T3 only :
Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland ad derived from pig thyroid dried and ground down into tablets referred to as grains.
First and foremost we need to see a full thyroid panel to include the vitamins and minerals and inflammation and antibodies and the TSH, Free T3 and Free T4 readings and ranges.
If you go into Thyroid UK - the charity who support this forum thyroiduk.org - you can read around all things thyroid and also there is is page detailing private blood companies who can run the necessary blood tests for you if your own doctor is unable to, some even offering a nurse home visit to draw the bloods for you.
This will be your first step back to better health.
It is a bit of a jigsaw and having no clear picture of what you are doing - but as you read around the forum pieces of information will resonate and your understanding start to build.
Just go one step at a time and key cornerstones, like maintaining optimal vitamins and minerals will be achieved and your journey back to better health starts here.
Arrange an early as possible morning blood test and stop taking and vitamin and minerals supplement for around a week before the blood test appointment so we can see exactly what your body is holding onto. The day before the blood test - fast overnight just taking in water, and take your daily dose of T4 Levothyroxine after the blood draw and when you have back the results and ranges start a new post on this forum and you will be talked through all that it means and offered solutions.
It's where we all start off - and then some of us tend to come back on in order to ' give back ' so to help and support other people to also get back on track and reclaim their health and well being.
hi LMT ! Lots of good advice here which I can’t add to, but will share my experience on migraine.
I notice that on your T4 is now 29 - while TSH is low: for years and years I was on 200mcg of Levo with high T4 results and low - TSH - and for all of these years I was plagued by migraine. Never had a T3 test.
After reading info from this group, I had private blood tests which showed T3 low in range - and requested an nhs Endo appt - and 16 months ago, changed to 125mcg Levo and 20mg Lio. T4 is now mid range and T3 near top of range.
Since this change of prescribing, my migraines have vanished. I used to have sumatriptan stashed in my car, handbags, work bags, etc : couldn’t leave home without it for fear of an attack. I accumulated a supply of repeat prescriptions, afraid they would start again - but then stopped ordering.
When I told my Endo that I had experienced this great improvement since change of prescribing, he didn’t doubt me, but acknowledged that it would take funded research to prove a link between t4/t3 and migraine.
And thereby hangs the age old problem with prescribing for thyroid disease : the reference fields are narrow and decision making can be exclusive of patient experience.
So - I greatly sympathise with your awful migraine symptoms. I can’t prove that introducing Liothyronine helped me - but I can say that migraine is no longer a regular feature of my life. I’m no less stressed, don’t work less, etc: the only change as been meds.
Good luck with your treatment: don’t be fobbed off (I was for years), trust your own understanding of your symptoms, and keep pushing for the better treatment you deserve. Remember that medics are often only prescribing on an opinion (theirs) based on ‘guidelines’. Your opinion is the more valid one.
thank you for sharing you journey with me. I really feel that hemiplegic migraine was caused by my very low meds.
every time I bring up T3/ link to migraine, I have a barrage of ‘it’s your age, stress, what do you know?, no, I don’t think so, you must be premenopausal. ‘ so to read your story, it’s made me even more determined to get my T3 etc tested to move forward. Thank you x
I know migraine is related to my hormones.Five years ago I stopped taking HRT because of cancer treatment - and the migraines became unbearable to the point where I told my oncologist I had to resume hrt - which I did - and have been on it for 20 odd years - with no intention of stopping again. I was also highly stressed about the effects of cancer treatment on thyroid meds and found v little support with this.
It’s really, really difficult to go against the advice or opinion of people you rely on for treatment, and I have spent many hours reading, researching and agonising over how I’d feel .
But asking for a T3 trial presented no risk at all for me that I could see - and I’m now glad I did.
You’ll find lots of information, but above everything, trust in how your feel - and be sure to articulate your symptoms as logically as you can, explaining how they effect your life - and present this as your reason for wanting to explore alternative treatment options . We don’t imagine our symptoms !
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thank you x
I really feel that hemiplegic migraine was caused by my very low meds. 
Yoghurt and thyroxine/NDT
Digestive enzymes/betaine pepsin in the morning
Thyroxine dose
Prescribed higher dose but son not been taking regularly the lower dose :/
T4/T3 morning dose time 
