I'm a 38-year-old male with Thyroid cancer (papillary carcinoma). I'm 174cm tall and weigh 152 lbs.
I had surgery to remove the tumor and my thyroid about 3 months ago (end of February).
On January 22 (before the surgery), my TSH was 3.59 mlU/L (range of 0.40 and 4.50), and my endocrinologist instructed me to increase my Levothyroxine to 75mg.
On April 19 (after the surgery), my T4 was 1.02 (range 0.93 and 1.70), my TSH was 46.10 (range of 0.27 and 4.20), and my Thyroglobulin was 100.4 (standard below 50), Anti-Thyroglobulin was 1.2 (standard below 4), Parathyroid of 29.4 (range 15.0 and 65.0), and 25-OH Vitamin D of 36 (range of 25 and 80)
On April 25, I was instructed to increase my Levothyroxine to 137mg (based on the blood work from April 19).
On May 22, my T4 was 1.83 (range of 0.93 and 1.70), and TSH was at 9.61 (range 0.27 and 4.20).
For the last 3-4 weeks or so, I've been suffering from extreme anxiety, depression, and I'm partially dysfunctional.
My mental health symptoms were so bad that I had to check myself into a mental health hospital for 24 hours
The psychiatrist in the mental health hospital didn't really know how to help me. He suggested that I'll stay for a few weeks so he can change my meds. I refused. As a "temporary solution", I got Seroquel and Gabapentin that may assist with reducing the symptoms.
I'm very emotional and overwhelmed for the last few weeks.
A new symptom that started about 3-4 days ago: I'm really hungry. I ate my regular dinner, but 2 hours later, I'm "starving" again.
I couldn't find any medical resources that talk about "High TSH AND high T4". My endocrinologist is very busy and will reply to my questions one day (not soon enough).
Has anyone in the world ever had high TSH combined with high T4?
Did anyone get any medications for the extreme mental health symptoms?
Thank you very much! ❤️
James
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James38
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Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, testosterone, 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
152lbs = 69kilo
Guidelines on dose by weight is approximately 1.6mcg per kilo per day
which would be 110mcg Levo per day
Get full testing correctly first…..before considering wether levothyroxine dose needs changing or T3 added
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 x more powerful than T4.
T4 - Levothyroxine is a storage pro-hormone and needs to be converted in the liver into T3 which is the active hormone that runs the body -
much like petrol powers the car and the gear box enables the car to function smoothly.
The thyroid ( your gear box ) is the major gland responsible for full body synchronisation from your physical through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels :
As a woman - I now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++) and vitamin D up at around 125.
It is essential that you are dosed on your Free T3 and Free T4 blood test results -
and not a TSH - you haven't a thyroid - and the TSH is a very unreliable measure of anything once on any form of thyroid hormone replacement - and when optimally medicated your TSH will likely be low/suppressed and towards the bottom of the range.
We generally feel best when our T4 is up in the top quadrant of its range with our T3 tracking slightly behind at around 60/70% - or put another way at around a 1/4 ratio T3/T4.
Some people can get by on T4 monotherapy.
Others find that at some point in time T4 seems to not work as well it first did - and that by adding back in that little bit of ' lost T3 ' - when they lost their thyroid - they are able to restore health and well being with these 2 vital hormones back in balance.
Some can't tolerate T4 at all and need to take T3 only - Liothyronine -
as you can live without T4 but you can't live without T3.
Whilst others find their health and well being improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
I'm so sorry you are feeling so ill -
when do you next see a medical professional, and or an endocrinologist ?
It is essential that you get a full thyroid blood test organised to include :-
TSH+ Free T3 + Free T4 + antibodies, inflammation, and the ferritin, folate, B12 and vitamin D so we can see what and where may need further support.
You already have a detailed reply from SDragon so there is no point me asking you the same questions again -
Ok no problem - I didn't realise you were in the States :
I have no idea as to hospitals in the UK let alone in the States.
Yes organise these essential blood tests earlier than the appointment so there is time to share them on here and we can offer advice and suggest your next best steps back to better health and give you the information to advocate for yourself.
It should be much easier for you to be offered all the treatment options - compared to the situation in the UK where the NHS guidelines suggest T4 monotherapy.
Obviously the landscape is very different if you can afford to go privately :
I had all of my thyroid removed in 2008 because of cancer so the first year of my treatment I was on T3 only. I remember they kept asking about my appetite, which was normal. They told me people who have a TT occasionally can't stop eating because they always feel hungry. I didn't get anxiety & depression till I started T4 because it made me ill so I've been on T3 only for years. My Endo professor Grossman will of retired now, others Endo's were not like him & didn't believe in T3 only because they thought T4 works for everybody, so I'm not suggesting you book an appointment. I had my thyroid removed at Saint Bartholomew's hospital, London. I'm wondering if Professor Grossman wrote any research papers about TT & appetite because it was a teaching hospital. My thoughts are are, are you on any other medication that could increase your appetite & do you eat enough protein in each meal? Years ago on the Richard & Judy show they had someone on called the Food Doctor & his advice is to work out how much protein you need in each meal to feel full. I feel best eating up to 50% protein in each meal. You may not be into it, but have you thought of alternative therapies like hypnotherapy to try & work out why you are so ill? Best Wishes
Hi. Welcome. I know how you feel. 40 yrs ago I had my thyroid removed (large goitre)+for first 2-3 weeks after discharge was given no Levo. I need to say that generally I am 'the encourager', not a stress head+don't have issues. However, 2 weeks with, no doubt, totally inadequate levo/T3 etc in my body I could have thrown a brick thru the kitchen window! Wasn't due to see consultant who did op until after 6 weeks ! Think I'd have destroyed the house by that time. Went to GP, had blood tests+immediately was put on Levo (high dose) as scraping the barrel+ in 2 weeks was a new woman! I knew diddlysquat then as no help available but learned so much in this forum, keep well away from GP, do my own blood tests, now have private Endo, and if I'd known this 49 yes ago would have spared myself the nonsense some GPs spout these days!! The admins+others on here know so much more than GPs +even Endos, providing lots of info+research. So don't despair, learn+activate what you know. I know my terrible thyroid levels after my op were responsible for my stress levels going through the roof+came down when on good dose of levo! Don't give up+don't give in!! If you feel overwhelmed, is there a friend or family member who can advocate for you where the medical profession is concerned? Trusting things improve as you push thru. We are all here for each other and that includes you!!
Hi James. I’m so sorry you’re enduring this . I know something about high TSH and T4 because I have Hasimotos Thyroiditis ( itis is inflammation) but I have not had my thyroid gland removed. I know ( I live in the states) that Cytomel is a omedication for when your thyroid gland isn’t working. In the UK are they not prescribing Cytomel? Or T3? It sounds as if your doctor is overwhelmed with too many patients to give you the attention you need. You need A replacement for the glad they removed from your body. Not a stimulant for the thyroid gland that is no longer there. I’m sorry if I’m being critical of your doctor. You do need a new provider though, that will “listen to your symptoms” Gabapentin just makes you crazy. You can buy GABA on line you don’t even need the prescription. But, it messes with the brain and I ended up being told I need a mental hospital or to “ get off the GABA or gabapentian. I said things I didn’t mean and was alienating my family. Don’t do that! Ask your insurance agent to please change you to a new provider. I’m praying for you. You’re going to need plenty of prayer. Take your health care into your own hands and be an advocate for yourself. God Bless.
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