Synthyroid reduction and now.....: Hi everyone... - Thyroid UK

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Synthyroid reduction and now.....

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Hi everyone

My Endo has put me on 88mcg of Synthyroid about 3 weeks ago before that I was taking 100mcg and 15mcg cytomel (T3) that I still take. Now my face feels and looks so puffy and Im right back to having bathroom issues again.

I'm due for another blood test in 3 weeks but currently I'm without a Endo mine is out on baby leave. I'm want to start taking the 100mcg synthyroid, what would you do?

25 Replies

Why was the dose changed (other than different Endo or was it he leaving pregnant doctor who did this)? Did you have blood tests, if so post them please with ranges, that concerned him/ her? I'd say stick to what makes you feel best/ better..... ie not ?constipation and puffy face.

Hidden
Hidden in reply to Judithdalston

My dose went from 100mcg to 88mcg because of a DEXA Scan I had done that showed I had mild osteopenia and according to endo My bloodwork showed I was hyper although all my blood work over the past 16 months has showed that and she was Ok before with my numbers until the Dexa Scan.

TSH suppose to be low so I'm told because of thyroid cancer until Dexa.

ShootingStars
ShootingStars in reply to Hidden

Hi Canyouhearthat. Did you have thyroid cancer? On your May results your FT4 and FT3 were much too low. Your levels are hyPO, not hyPER, so reducing your medication has only made you even more hyPO. Your TSH was fine, but TSH isn't what medication adjustments is made by. It's FT3 and FT4 levels, and symptoms.

Osteopenia can be caused an overactive thyroid or over medication, but not by an under active thyroid or by being under medicated. It can also be caused by genetics, Coeliac Disease, chemotherapy or radiation, being post-menopausal, certain medications or from age related bone loss.

Hidden
Hidden in reply to ShootingStars

YES, I had thyroid cancer and I agree my osteopenia has nothing to do with my TSH.

I did have a cortisone injection about 3 weeks before my thyroid test and Im betting this caused my TSH numbers to tank when I mentioned this injection to my Endo after they freaked out "telling me my bones are going to crumble and Im going to have heart problems" they didn't care at all. I'm going to wait do the test see the numbers and start seeking Endo outside the pathetic military treatment facility I currently am victimized by.

ShootingStars
ShootingStars in reply to Hidden

Hi Canyouhearthat. I'm sorry to hear that you had thyroid cancer. "Pathetic" is a great description for that endo. Are there other endos within that medical facility that you could see? Otherwise, yes, find one outside of the facility. Count down to your next tests in 3 weeks. It will be here before you know it!

:-)

Hi Canyouhearthat. Yes, if you have blood tests, TSH, FT3, FT4, can you please post them? That is odd. Were you really hyper (FT3 and FT4 over 3/4 range) and having hyper symptoms, or was your doctor only thinking your were "hyper" based on low TSH? If your levels and symptoms were hyper, that is even more odd that she would have kept you that high for 16 months.

Constipation and puffy face are hypo symptoms. Your FT3 and FT4 levels must have decreased enough to cause symptoms with your lowered your levo.

Have you had both of your antibodies tested, TPO/ab and TG/ab, to rule out autoimmune disease as the cause of your hypothyroidism? If you have Hashimoto's, if meds are decreased too much and the thyroid slows down too much, antibodies can increase and so will symptoms.

Jazzw
Jazzw in reply to ShootingStars

They’re here, Shoot. healthunlocked.com/thyroidu....

And I reckon the dosage shouldn’t have been reduced...

ShootingStars
ShootingStars in reply to Jazzw

Hi Jazzw. Thank you for that link. Not another doctor who can't read or understand blood results, or take into consideration the symptoms! How can anyone interpret those LOW levels as being hyPER? This is so cruel and unfair to patients. :-(

There is nothing at all even remotely close in those May 2018 blood results as being hyPER. These blood results are hyPO. In the May results, both FT4 and FT3 are too low. FT4 is not even 1/2 range, so was too low. 1/2 range is 1.315, but her's was only 1.29. FT4 should be over 1/2 range. The higher it gets towards 3/4 or over, the more symptoms. Below 1/2, there are symptoms. FT3 is barely existent. FT3 should be close to 3/4, or 3.8. Her's is at the very bottom of range, 2.950. It's not wonder she has increased hypo symptoms. If FT3 gets much over 3/4, there will also be more symptoms.

With the May levels being so low, meds should have been increased, not decreased. I wouldn't be surprised if FT3 is close to below range now, and that FT4 in also much lower.

Hidden
Hidden in reply to ShootingStars

The Endo interpreted my results as being hyper because she's just stupid ....no nice way to put it she is just stupid and doesnt take my other health issues or meds into consideration at all.

Honestly after reading so many other people's issues with Doctors and Thyroid I've lost hope I think they all suck and Im doomed with wearing this fat suit on forever. I wish I left my thyroid in my neck cancer or not it's not worth the aggravation and lack of medical help you get once it's gone, what a let down.

Im still convinced that Stelara has something to do with my thyroid numbers.

ShootingStars
ShootingStars in reply to Hidden

Hi Canyouhearthat. Do you suppose lack of intelligence and logic is a requirement for an endo position? ;-) It's such a common theme. So is treating the lab results. What ever happened to treating the whole person and taking into consideration other medical conditions?

Hang in there! Have faith that you are not doomed. I agree that many or most suck. You can always take your own health into your own hands, as many people have. You can order your own meds if you have to. If you take the right medication and right dose, you will feel so much better! Your FT3 is nonexistent in your last labs. If your FT3 is not optimal you will have all kinds of symptoms. If you are not responding to your current dose of T3, you might want to consider increasing your dose. If your levels are not optimal, you will never feel your best.

I am not sure where you are located. Depending on where you are, a naturopath or integrative med doctor might be a better choice in managing your thyroid disease. I will not see an endo for my thyroid disease based on my experience with them, which you have summarized quite well. ;-)

I just checked for interactions between Stelara and levo. There are no know interactions. I forgot to ask, how are you taking your thyroid medications? How you take it and what you take with it or near the time of taking it makes all the difference in absorption.

:-)

Hidden
Hidden in reply to ShootingStars

Hi Shootingstars thanks for your time,

My medication schedule:

I take my synthyroid and 1 cytomel at 4:15am (us time) then go back to bed until 6am get up and then I eat breakfast around 8am and then I take the 2nd Cytomel between 9am and 10am, around 12pm I take all of my regular meds and then take my last cytomel between 3pm - 4pm at 7pm I take my supplements.... I feel complicated and eaten up by a medication schedule 😁

ShootingStars
ShootingStars in reply to Hidden

Hi Canyouhearthat. You are very welcome. Any time! :-) That's funny about feeling complicated and eaten up by your med schedule! ;-) Your thyroid med schedule is causing your thyroid meds to not quite be set up for maximum absorption. Your second T3 might not be absorbed much at all because it is taken only one or hour so after food, when there is still food in your stomach. Food interferes with absorption, so it is always recommended to fast ideally 4 hours before taking medication. At a minimum, 2 hours fasting from food or drink aside from water is recommended.

I take the exact same amounts of T4 and T3, and sometimes I take a 4th 5 mcg T3. I take my T4 and 10 mcg T4 first thing in the morning with water only, wait one complete hour before food or coffee. My afternoon T3 is taken after not eating food for at least 2 hours, but usually more. Sometimes I take a 4th T3 with my afternoon T3, or sometimes I take it later into the evening. It just depends on how I feel.

:-)

Sorry but I have no knowledge of DEXA scan etc to comment on how this may effect your thyroid results, or why doc alters your dosage, when it makes you feel bad.

Hidden
Hidden

DEXA SCAN is a Bone Density Scan

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Hidden

I've been telling the Account "Endo" over and over that im not hyper that infact I feel my meds could be increased for the following reasons

1. Menopausal (take estrogen)

2. Autoimmune Disease (take Stelara)

3. Had Cortisone injection 2 weeks before thyroid blood test and apparently steroids can cause TSH to bottom out.

My Dexa Scan (Bone Density) would most likely reveal osteopenia I'm a heavy steroid user for my Autoimmune Disease.

Would you keep taking the 88mcg and then do the bloodwork get the results and up my meds or seek new endo and hope he/she has some skills? Either way I need Doctor in order to get scripts.

ShootingStars
ShootingStars in reply to Hidden

Hi Canyouhearthat. That must be so frustrating that your endo hasn't listened to what you are saying, or paid attention to your medical history and lab results. That is a good question and is up to you. You aren't feeling well on 88 mcg. You were too low at 100 mcg (maybe you have some left over?), and needed an increase then. If it were me, I'd high tail it out of there faster than that endo can blink, and would get a new doctor. Other options would be to go back to 100 mcg, order your own tests and meds if you need to so that you can get the increase in medication that you need.

I had an endo decrease my levo similarly to yours and also based solely on my TSH being something like .001 below the bottom range number. I also take T3, like you do. Within a week or two I had hypo symptoms, where I previously had no hypo symptoms. I knew the endo was wrong in her way of thinking, so I went back to my previous dose of levo. Even with me just being on reduced levo for a few weeks, at my next 6 week bloods, both of my frees dropped considerably and my TSH went way up to over 1.0. My TPO also increased. My next 6 week bloods were back to normal, except my TPO stayed elevated for awhile due to that decrease in levo and the strain that put on my thyroid.

Do you have Hashimoto's? Once you have one autoimmune disease, the chances of having more increases.

Hidden
Hidden in reply to ShootingStars

I do have autoimmune disease that's not thyroid related and not one Doc said anything about Hashimoto disease.

ShootingStars
ShootingStars in reply to Hidden

3. Had Cortisone injection 2 weeks before thyroid blood test and apparently steroids can cause TSH to bottom out. Except your TSH wasn't bottomed out, and it's not TSH that matters anyway. Yours was suppressed but your thyroid hormones were still too low and very hypo.

Hidden
Hidden in reply to ShootingStars

TSH matters to the accountants"Endos" and sadly that's where all this mess sits right now. I'm starting to look for a new Endo outside military treatment facility.

helbell
helbell in reply to Hidden

I reckon you know more than your endo. Did she not even refer to the steroid use? !

Hidden
Hidden in reply to helbell

They could careless about my current health issues and medications I take (Stelara). I still think (Stelara) alters things that are not known.

On another note.

My Primary Doctor WON'T even do a simple blood test to check me for inflammation because I have a disease that is notorious for causing inflammation (Stelara is suppose to reduce my body of inflammation ) but ever since my Thyroidectomy my body pain have increased and no matter how many Xray and MRI she does they all show severe inflammation in my feet joints and still she won't do the blood test....idiots the whole lot of them.

My recent MRI on my foot shows severe inflammation again and now I have a tear in my tendons (Wow). I feel doomed.

ShootingStars
ShootingStars in reply to Hidden

Do you know if you have Hashi's? (sorry if I missed that part where you say you do or don't). Body pain and inflammation can be a sign. Even though you no longer have a thyroid, you can still have thyroid antibodies or Hashi's with no antibodies, and still have Hashi's. I had severe foot pain before I found out I have Hashimoto's. My frees were both at bottom range. After starting meds and then raising my levels, my food pain went away and has not ever returned. The thing about inflammatory tests (ESR, CRP), you can still have inflammation in your body, but can test negative on either or both. I've tested both many times and mine have always been normal range, even when I could feel the inflammation flare up in my joints or when I briefly had edema.

SlowDragon
SlowDragonAdministrator

Make sure vitamin D levels are optimal too. Not just some where within range

Adding magnesium and vitamin K2 Mk7 are important for bone health too

articles.mercola.com/sites/...

Also test folate, B12 and ferritin

Hidden
Hidden in reply to SlowDragon

I will be getting those test when my thyroid test is due and your right I do think my calcium is off Im starting to have this tingling sensation around my nose and mouth.

shaws
shawsAdministrator

I'd go by my instinct and thyroid hormones should benefit you. As you aren't feeling so good with the reduction.

Some endocrinologists believe that if our TSH is too low it will cause osteoporosis but this is not true, in fact thyroid hormone help our bones. For instance people who've had thyroid cancer have to take thyroid hormones which suppress the TSH. TSH is from the pituitary gland and means Thyroid Stimulating Hormones. I doubt those taking high doses develop problems with bones.

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