Hello! I am new to the group, and so thankful I'm here. So much knowledge. I was diagnosed with hyperthyroidism in 2009. Radioactive Iodine ablation was done in July 09 and I was then diagnosed with Graves disease. I went through radiation on my eyes, and a year later had orbital decompression surgery on both of my eyes. I have since struggled with my TSH, free t4 and T3 levels since. I have moved several times in the past 5 years and every time I see a new Dr they mess with my meds.
I had labs done yesterday. I feel awful, look awful, and I'm becoming so depressed again. Excessive sweating, heart palpitations, and unbelievably hot - especially when I lay down to sleep. My skin is horribly dry and uncomfortable. And I am pretty sure I am goung to have to start using insulin for my diabeties. I really could use some help as what I should do . These are my labs:
TSH is 11.24. Range 0.4 - 4.5
T3 is 2.7. Range 2.3 - 4.2
T4 is 1.3. Range 0.8 - 1.8
I am currently taking 150 mcg of levothyroxine and 10 mcg of levothyroxine that I split during the day.
I have an appointment tomorrow. I'm wondering if the heart palpitations and sweating are thyroid related.
Thank you! Lisa
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Thor70
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All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
When on T3, make sure to take last dose EXACTLY 12 hours prior to test
Is this how you did the test?
Presumably you mean 150mcg Levothyroxine and 10mcg Liothyronine as split dose
You need vitamin D, folate, ferritin and B12 tested. Highly likely some or all of these are too low, preventing good use of thyroid hormones
Do you always take same brand of Levothyroxine and same brand of T3?
Which brands?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Presumably you know to always take both Levothyroxine and T3 on empty stomach and then nothing apart from water for at least an hour after
Your either still not taking enough, or gut is very badly affected and have malabsorption
Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Thank you so much. It was a fasting blood test, but I'd taken Levo and lio within 24 hrs. I do take them on an empty stomach in the morning. I will ask for another blood test. I've never gone gluten free - will ask for this test also. As for brand names, I'm not even sure right now. I will check and post.
How do you take your hormone - both levo and T3? Do you always take it on an empty stomach and wait at least an hour before eating or drinking anything other than water? And at least two hours before taking any other supplements or medication?
A lot of symptoms can be low vitamins due to low stomach acid and low stomach acid and gluten intolerance often go together
It's essential to regularly test these four - vitamin D, folate, ferritin and B12. High percentage of us need to regularly supplement to maintain optimal levels, otherwise Thyroid hormones can't work
Gluten intolerance is extremely common with Hashimoto's and Graves
You don't need any gut symptoms, but if you already have gut symptoms it's highly likely an issue
I too have Graves Disease, diagnosed in 2004 and treated with RAI in 2005. and am 71.
I am on here learning all I can as you and I now know -
RAI is not necessarily the " quick fix and totally safe " treatment option for Graves Disease.
I too had recently moved and knew I wasn't settled so asked that the hospital kept me as an outpatient and monitored my progress, and this was agreed.
I chose a doctors surgery where there was a doctor with thyroid as an area of interest.
It would seem some people ' sail through ' this disease, whilst others struggle.
I have read and reread many books these past 4 - 5 years and learnt so much -
In the first instance I would suggest that you ask for a referral back to the hospital.
I notice you are taking T3 - this medication is not generally being prescribed in primary care, and an endocrinologist will be better placed to monitor your progress.
My doctor knew nothing of Graves Disease.
I was on monotherapy - Levothyroxine - 100 / 125 daily - over these past 10 years -
I was monitored on only a TSH - my reads swung between 0.3 and 12.5.
The only other medication offered me was an anti depressant.
I thought it was all my fault, doctor knows best, I'll just push on - as I've done all my life.
This site is amazing - I have learnt so much -
Graves Disease - A Practical Guide - by Elaine Moore - she also has a website - USA -
Your Thyroid and how to keep it healthy - Dr Barry Durrant Peatfield -
Tired Thyroid - Barbara S Lougheed - USA protocols -
Being hyper, your body has been running fast, the chances are you are vitamin and mineral deficient - don't underestimate their value in your overall well being - sadly this seems to be another area where Nhs guidelines are nowhere near where you need to be to feel optimal.
I have this year seen the one and only NHS endo in the past 10 years -
I was refused a trial of T3 as my TSH was suppressed and discharged back into primary care.
I paid privately to see the head of the endocrinology department - I paid him £185 and
was advised to " go on the web - read up - basically told DIY - it seems I am ???????
I am currently self medication with NDT and supplementing vitamins and minerals as detailed on this website, and am quietly confident.
It seems to me primary care doctors do not have any understanding on how to manage Graves Disease post RAI.
This is somewhat borne out by the most recent article by Professor Toft - 2017 -
Thyroid hormone replacement - a counterblast to guidelines -
It is on this website, in full to read, copy, but sorry, my computer skills are limited.
I did furnish both my doctor and the Nhs endo with Prof Toft's article - lead balloon comes to mind ?
My Graves thrives on stress and anxiety so have simply done the " U " turn like many others before me, and started to self medicate with NDT.
I would like my medical records updated accordingly, once I'm confidant in my own
treatment.
I would like to think there was some Nhs support and that I didn't feel so let down, disappointed and disillusioned in the medical profession.
I thank you and your fellow advisors for all the help and support I have received and try to help others where I feel I might have something of some value to say.
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