Feedback is appreciated

[WarriorPebbles77]

Hello, all! I may summarize a bit. I was "diagnosed" underactive/hypothyroidism from age 14 and given 100mcg Levothyroxine at the time. I am 43 yrs old, I have weened myself off 16 days ago. Feeling so relieved mentally. More clarity, little to no racy or unnecessary thoughts...So peaceful in a sense. I am currently gathering evidence on a similar situation. Has anyone weaned off and how do you feel? Also, please send a clear statement on how horrible you feel on the Levothyroxine and your dosage. THANK YOU!! Talk soon! 🩷

[TiggerMe Ambassador]

Hello and welcome,

Not much to go on there but generally people that stop feel good for a few weeks and then feel awful and need to restart as they become hormone deficient.

Do you have any recent blood test results?

I assume you think you were mis-diagnosed all those years ago?

Have you considered that it may be the peri-menopause that is messing you about?

[WarriorPebbles77 in reply to TiggerMe]

Hi! Thanks for replying!I do understand the withdrawal process and symptoms as well. Not a good feeling! However I don't want the doctors to dictate my health anymore.

My recent was 6.8 on 50mcg. In December it was 1.8. Between that timing I would sometimes skip 1 or 2 days a week. I know, that didn't help my levels.

I honestly am trying to see if there is a litigation against the pharmaceutical industry. Ha. Doesn't hurt to try. (I won't go into that on here). I need forums so I can print out others history with Levothyroxine.

Thank you again!

[TiggerMe Ambassador in reply to WarriorPebbles77]

I'm not quite with you on what you are trying to achieve but with a TSH result of 6.8 you are hypothyroid which is causing the somnolence and probably constipation, low heart rate, low core temperature, brain fog?... are you keeping track of all these markers? Along with BP which may go up or down

Do you have auto immune hypothyroidism do you know?

I must confess to being a very happy HRT user, I supplement estrogen. progesterone, testosterone, T3, T4, DHEA... life is a very cold dark place without them 🙃

[SlowDragon Administrator]

What were your results BEFORE stopping

Thyroid and vitamin levels

Quite likely to crash severely in week or so

Very very common to initially feel much better when stop levothyroxine, before metabolism and vitamin levels crash

if you don’t crash before 6 weeks get full testing then

If you crash before that, test immediately

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 annually, but especially with any dose reduction in Levo

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test (and last dose levothyroxine 24 hours before test )

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[WarriorPebbles77 in reply to SlowDragon]

Hello! Thank you for that information!

I am aware that I could crash as I still deal with somnolence (which is a medication side effect), so I will see how long I can stay Off and maintain a healthy diet and fight through sleepiness. I understand it is an internal sickness, I'm going to overcome this. : ) You can also read my other response above to clarify, if I left anything out.

I'll be getting tested this week. I have been off 17 days now. Just struggling with somnolence. Thank you for your time!

[tattybogle in reply to WarriorPebbles77]

Hi , you mentioned on another post that you won't be telling the doctor you have stopped until they have done a blood test this week .

You need to be aware that a blood test taken 3 wks after stopping thyroid hormone replacement is not going to give you much useful information about anything because:

~ it takes TSH longer than that to respond and settle down after any change in dose (or stopping)

~ and also because your blood will still contain some T4 from the replacement you have been taking (T4 has a long 'half life' of 7 days in the blood meaning there will still be some left even after 2 wks) .

If you are testing to see if your thyroid is capable of making enough thyroid hormone by itself , then you would usually need to wait at least 6 wks after stopping , and then test, to allow enough time for the T4 already in your blood to be used up , and for your TSH to respond ...... so if testing this week you should make your doctor aware of the date you stopped so they can interpret the test results in context ... and so they can test again in a few more weeks and keep an eye on it at intervals.

please be very careful if driving / crossing the road ... and be realistic , you can expect to have a tough few weeks while your T4 levels are dropping sharply , and there may be a delay before your TSH rises enough to stimulate your thyroid to try to make T4 for itself ( if it can) , you may be ok at first ~ some people do feel ok for weeks/ months when they stop taking thyroid hormone , but may then become really unwell quite suddenly , but some people will be really struggling within days/ weeks of stopping.

If your thyroid cannot make enough T4 for your body's needs then you will need to start taking thyroid hormone again in some form .

Stopping thyroid hormone replacement to see if your thyroid can function adequately by itself is going to mean you need to be very careful for the next few months while you see what happens to you .. so i would put any big plans on hold for now .

[WarriorPebbles77 in reply to tattybogle]

Thank you for the information and concerns. 🙏The reason for not mentioning it to the doctor is to see if they are lying about the results(to keep me medicated and for insurance purposes $). (You can call it conspiracy theorist lol). Some people tell me that the doctors lie and they mention the ROOT cause of most sicknesses.(I do comprehend the spiritual side of sickness, but we don't have to get into it here).

Most withdrawal symptoms are psychological/mental/some physical.....I will certainly do my best to overcome those. But I will also use wisdom and logic with my health.

Basically, I am sick and tired of being sick and tired. The same way God Performed miracles with other sicknesses, I know it can happen for us or me. (Jeremiah 30:17, Psalm 103:3 is my "prescription now). : )(Sorry if you are not spiritual, I am just sharing for those who are seeking, too). I am grateful for your advice. Thank you, mate! 🙏🙏

[tattybogle in reply to WarriorPebbles77]

We are concerned because you seem to have little idea how the thyroid works , or how the HPT axis works .... so do please take care.

it's best not to bring religion (or conspiracy theories) into it on a thyroid health forum ... as neither of them are able to make T4 and T3 .. only the thyroid gland can do that.

[WarriorPebbles77 in reply to tattybogle]

Understood! Thank you so much!! ❤️

[ratoncita]

I weaned off that a few years ago and went on Dessicated thyroid. Works much better for me.

[WarriorPebbles77]

Hi! I am glad to hear that.

If anything changes in a month, maybe I can look into that one.

Thank you!