NEW RESULTS, I FEEL LIKE I’M DYING: Hi all, Just... - Thyroid UK

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NEW RESULTS, I FEEL LIKE I’M DYING

Rosebud1955 profile image
6 Replies

Hi all,

Just a refresher, I had total thyroidectomy for papillary cancer in 2017, have not been well since surgery. All vitamin & mineral levels are optimal. I take synthroid 100mcg, 7.5 mcg cytomel, taken together at 7am with a full glass of water, breakfast at 10am. Supplements : 400mg magnesium glycinate (taken at least 4 hours apart) vitamin C 2000 mg, selenium 200mcg, B vitamins. Ferritin, vitamin D, iron all at top of range. I eat clean and healthy, went gluten free, dairy free four years ago after contracting Lyme Disease. Please, can you knowledgeable folks give me some suggestions. I have a reasonable endocrinologist who listens but takes no actions, also obsessed with this and osteoporosis. Here are my most recent results (September11)

Tsh : 0.02, Ft4 : 12 ( 9-19), Ft3 : 3.2 ( 2.6-5.8) DHEAS plasma : 6 (0.0-3.5) ACTH :22.5 (<14).

Thanks for any advice. I want to increase my cytomel to 10 mcg, but reluctant to do so. Does my Ft4 need to be higher? I was put on cytomel because my Ft4 was high but my Ft3 was very low. Can anyone help me figure out what the problem is?

Thanks.

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6 Replies
Lalatoot profile image
Lalatoot

Sorry you are feeling soo poorly. Your Ft3 is low. Most would only feel well with Ft3 over have way through the range. Half way through your range would be 4.2. Some have found that they feel best at 80% through the range so they would want to be 5 or so. I would look to increase t3 initially. Ft4 is lower when t3 is added and some feel fine with that. It may be that you need a higher level of ft4 eventually but personally I would change my t3 first.

waveylines profile image
waveylines

You are under medicated. 100mcg of levothyroxine is very low for someone who now has no thyroid!! This show in your ft4 & ft3 levels. If it were me I would ge expecting my doctor to be tiltrating my dose upwards every 6-8 weeks . A full replacement dose is around the 200mcg mark of levothyroxine... As you are entirely reliant on medication you may also need t3 as well. .

SlowDragon profile image
SlowDragonAdministrator

Many people need to take 2 or 3 doses of T3 per day. Split 12 hours or 8 hours apart

You could try adding 2nd dose of T3 mid afternoon

Retesting in 6-8 weeks

You may also need to increase Levothyroxine. But only increase one or the other at any one time

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also important to test vitamin D, folate, ferritin and B12

What vitamin supplements do you currently take?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Rosebud1955 profile image
Rosebud1955 in reply toSlowDragon

Thanks for replying, my vitamin D level is 156 (75-150) I supplement with D3 2000units sublingual drops, I also take K2mk7 along with it. My bold work was done exactly as you suggested. I value your advice, should 8 increase the cytomel to 10mcg for now? I experience difficulty splitting doses because I take of my rigid dietary needs for Lyme disease. I have also noticed that when I take cytomel by itself, I experience head pressure and ear pressure. I don’t seem to notice it when taken together with Synthroid, maybe because I go back off to sleep after I take the morning dose. Could I be reacting to the cytomel? What’s your opinion?

Thanks very much.

SlowDragon profile image
SlowDragonAdministrator in reply toRosebud1955

You could try splitting synthroid too

50mcg synthroid plus 5mcg T3 taken twice day

shaws profile image
shawsAdministrator

I've read that when a person takes a T4/T3 combination that scientists have found that a 4:1 or 3:1 T4/T3 seems to give the best results. Your T3 dose seems too low (keep in mind I'm not medically qualified).

I have my thyroid gland and couldn't recover on levo or T4/T3 but am best on T3 alone.

Of course everyone is different and some people also find an NDT (natural dessicated thyroid hormones - the very original) which is made from animals' thyroid glands and in use since 1892 suit them best. There were no blood tests then, so patients were not restricted to a dose but it was gradually increased until patient was symptom-free.

It is trial and error and when we feel awful when taking thyroid hormone replacements we wonder if we're going to improve. Yes, we can improve but few endocrinologists seem to know the best to restore patients health with optimum dose.

I believe that if someone has had thyroid cancer they have to have a suppressed TSH.

Both your 'frees' are too low. You need increase in dose.

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