Meds Decreased yet labs are doing the opposite:

Hey all...

You have all been so hopeful and I am hoping to get some perspective.

It has been two months since lowering my medicine. Most recently I was on 175 mcg of Synthroid and skipping every Sunday to equal up to 150 mcg. I should remind you, I am sans thyroid and I felt hypo prior to my TT and 10x worse now sans thyroid.

My TSH as of most recent was .03 (range .3-4.5) (this has decreased from 175)

FT4: 1.7 (.82 - 1.77) (this has increased from 1.2)

FT3: 2.5 (2.0 -4.4) (this stays the same pretty much all the time but is slightly increased)

It has been two years of HELL. I was started on 150 Leoxyl and have tried Tirosint, Naturthroid, Cytomel, and now I've been on Synthroid. Ironically, my docs want to lower my T4 but since dropping that seventh day, my labs have gone the opposite yet I feel even more lethargic, more exhausted, MUCH MORE sensitive to the cold, and my already horrible sleep has become all the more dire. Oh- and my arms tingle more the morning following workouts, I'm more constipated and my mouth is much more dry. I also don't have as much hunger. I know hyper and hypo can be paradoxical to the other but I don't have heart palps, my BP is super chill and I don't get anxiety... My sleep has been extremely effected since day one starting thyroid hormone replacement but has not eased up even on NDT or with T3 added. All other levels are good regarding vitamins/minerals.

So, what gives??

I know my FT3 sucks and always has. It doesn't get higher than 3.0 unless Cytomel is in play and still tends to cause me some issues. I also find that Synthroid has suppressed me on it alone than even Tirosint and almost as much as NDT, to my surprise... but I may still swap back to Levoxyl. My TSH also tends to be at zero regardless of my dose since TT. The only time it has gone past 2.0 was when swapping from NDT to 125 T4/5 T3 but my symptoms were much akin to now, just more lethargic and cold... and at 137, too. I am at a loss. A genuine true, loss. My mind can't figure out if maybe I need some freakish amount of T4 to feel good again or if I need basically next to nothing. The only time I felt well was for the short stint on T3 only after TT prior to RAI but I know I still had lots of natural hormones still floating around so it's hard to say... I just want help, answers. My doc wants to try me on LDN to see if there's improvement as I tested posted for Hashimoto's but that was while on NDT and has not been tested in the year since.

I just want "me" back. I am awed by those with a thyroid on higher doses than me and then those without that also feel great and running marathons on less of a dose than me. And then there's me, sitting out two years of her life because she feels miserable. I'm only in my 30s and have lost so much time.

Also, I'm 5'9 and weigh 156.. that's been constant mostly just in case that helps...

Any and all feedback would be beyond appreciated and helpful...

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14 Replies

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  • Hi, I've just looked at your other posts. You must be so frustrated!

    I know you have said previously that your vitamin and mineral levels are fine, but is this fine as in they are in range, or are they optimal for people with thyroid issues?

    Also, have you had any testing on your adrenals? I've no personal experience in this area, but based on the forums I subscribe to, this as well as T3 resistance seems to be areas to look at if you are still having issues despite optimal Vit and mineral levels. Adrenal issues can also impact sleep.

    Just a random suggestion - I'm sure someone with more knowledge will be along shortly to try and help. 😬

  • I think you need T3 only. You cannot convert that T4, can you. And it's possibly converting to rT3. You certainly need some T3, somehow. You certainly do not need freakishly high doses of T4! So, if you've tried everything else, I would suggest that next on the list is T3 only. :)

  • I agree with the comment to look at your adrenals. Do a 24 hour saliva cortisol test, if possible. You may need to try adaptogens and nutritional support like large doses of B5 and C if you find a problem. Or hydrocortisone with a severe problem, but try the others first

    I also agree about trying T3 only. Doesn't seem like you're converting. Cytomel doesn't work for me due to food allergies, I had to find a generic I wasn't allergic to the supposedly inert ingredients.

    How are your iodine and selenium levels? Could be a factor. And folate, B12 and iron?

    And thyroid antibodies?

  • You guys are awesome.

    My B-12 at top of the range, my Vitamin D was 55 (range 30-90), Iron was above range, Ferritin is sad but I've been supplementing...

    I have been taking high amount of Buffered Vitamin C, Ashwagandha, Selenium, Zinc... I can't take iodine as it tends to not settle well with me so I consume seaweed instead... and I luff it.

    This doc did mention a saliva test and even though she opted for a blood cortisol test, it's because she said insurance will cover it and it'll be enough to have ground for a possible ACTH test. I hear about saliva tests but I've never accrued any answers for one how goes to treat the issues....

    And ironically, today was a prime example of why I'm so tired: the sleep.

    Even before my body generally jolts itself awake I could feel what feels like anxiety in my chest. It's constant when it happens. I start to get extremely hot and then cold and feel like a warmth throughout my chest.. and even though I am EXHAUSTED, I am unable to return to sleep. I'll lay in bed for the next few hours and have a light dream, but I am jolted and stirred and it's vicious. Again, this has been since starting thyroid hormone. My mom who is always on the receiving end of my ailments definitely feels it is a chemical reaction but just not sure why... she thinks I need more medicine and I don't feel good about lowering but I'm lethargic... and this doc wants to try LDN before T3 as it can aid any inflammation but I need solace and normalcy. I wouldn't even know what amounts to start with but I feel MISERABLE.

  • You should not take any form of iodine without first getting tested. Excess iodine can make you much worse. It is not a cure, it is one of the ingredients of thyroid hormone. Taking iodine stimulates the thyroid, and that could be why your levels have gone up. But, it can't last forever, because stimulating a sick gland will just hasten its demise. And, eventually, it will crash.

  • anddddd, i've heard about the T3 only... but i just feel strongly that I need T4 but maybe not strictly or as much... ;/ I think the lack of thyroid messed my life up.

  • Why do you think you need T4 if you can't convert it?

  • Just from when I was on NDT... my main issue was a certain fatigue that I was able to correlate to the lack of FT4 I was getting... Once I started adding in additional T4 though it was like the hell gates opened and caused such horrible physical side effects, so I had to stop... Once I started getting a higher FT4 though those side effects lessened but clearly I'm still having tons. I do think that maybe more of this is cortisol/adrenal than anything... but since lowering my T4, I feel worse... hence the enigma. Two years of this. :/

  • NEVER lower meds based on blood tests alone! Demand a full examination.

  • yeah, i'm pretty beat. i had a family doc that offered to raise my T4 and that qualmed my chills and such, but a week later and I feel bad still. this sleep thing! it literally feels like my brain is thrashing when trying to go into a deep sleep... i managed to *nap* earlier (one of like four since my thyroidectomy) and for an hour, but had two nightmares during it! i awoke once again excruciatingly hot, heart racing (even though RHR was 63 per FitBit), and I am just tired. I can't continue doing this, guys. Two years of no sleep and as if being told having cancer wasn't already horrible enough... I will ask for T3 but won't be for a few more weeks. I scrolled through many of my labs and see that as a common denominator but not sure where I should start with dosing. I know either I need a higher FT4 with less T3, but not sure. My FT3 is always in the dumps and I am beyond sleep deprived, depressed, fatigued...

  • Have you ever got your C reactive protein tested? I found out mine was high along with folate which is a marker for something else going on in the body beyond the thyroid issue. It's not always something serious but many physical things going on can cause similar symptoms to the thyroid disorder.

  • thank you for responding! i did and all came out normal... :/ ANA tests, everything... i just think this FT3 must be having a huge thing or maybe my pituitary go messed up during RAI treatment.... but no idea on who to see to check.

  • Sorry for the late reply. I don't know all that much about the pituitary gland only the importance it has on the entire thyroid itself but I've seen posts in the past by people who have been diagnosed with pituitary problems and failures. May be an idea to put a post up and ask as then they can tell you how this was diagnosed.

  • thank you! i will do so!

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