17260518 tn?1455212465

Still struggling with hypothyroid symptoms

I was diagnosed with hypothyroidism due to Hashimoto's about 16 years ago. I still felt really ill taking just Synthoid, so about 12 years ago I asked a doctor to let me add Cytomel which caused some improvement, but I'm still struggling with symptoms I believe are related. I haven't yet found a doctor who's been able to help me address my symptoms by better managing my thyroid. All the doctors just test my TSH annually (0.735 last week) and renew my prescriptions. I'm hoping for some wisdom as to what else I could request my doctor to do or look into.

My worst symptoms are brain fog (my mind often feels blank, I have trouble processing my own thoughts or what people are telling me, poor word recall), insomnia (frequent trouble falling asleep, always waking up unrefreshed), and fatigue. Other symptoms include cold extremities and light headedness (nearly blacking out) when standing. I currently take 88mcg Synthroid and about 7mcg Cytomel in the morning 30-60 minutes before eating.

What tests should I request to have taken initially to find out what all may be contributing to my symptoms? Which labs should I request for ongoing thyroid maintenance? If a lab is out of range, how do I know if I should adjust the Synthroid or the Cytomel? Thanks in advance for any help!

6 Responses
649848 tn?1534633700
First of all, let me say that I'm appalled that your doctor would prescribe a T3 med like cytomel without having done all the proper tests to begin with... That is enough to warrant a new doctor!!  Now that I got that off my chest, I'll move on...  :-)

The tests your doctor "should" have been ordering and using, along with your symptoms, to adjust your medication dosages are Free T3 and Free T4.  Those are the actual thyroid hormones, while TSH is a pituitary hormone and neither correlates with symptoms nor FT3/FT4 levels. Free T3 and Free T4 should be tested every time you have a TSH test.  

How are you getting 7 mcg/day of cytomel?

If you can get Free T3 and Free T4 tests done, you can post the results here, and we can help you interpret them.  Be sure to post the reference ranges, as reference ranges vary lab to lab and have to come from your own report.

Because of your ongoing fatigue, you should also go ahead and get vitamin B12 tested.  B12 deficiency can cause the most horrible fatigue imaginable.  You can also ask for vitamin D and ferritin, since, both vitamin D is necessary for the proper metabolism of thyroid hormones and iron is needed for conversion of Free T4 to the usable Free T3.

Results "in range" are necessarily satisfactory...
Here are the lab results I just received after meeting with a new doctor recommended online by other thyroid patients. These were taken in the late morning after intentionally skipping my morning thyroid medication as instructed by the doctor. Again, I am trying to resolve my main ongoing symptoms of brain fog and unrefreshing sleep (as well as frequent difficulty falling asleep).
TSH 0.39 Ref. range 0.4-4.5
Free T4 1.3 Ref. range 0.8-1.8
Free T3 2.9 Ref. range 2.3-4.2
Reverse T3 25 Ref. range 8-25
TPO 78 Ref. range <9
TgAb 2 Ref. range <or=1
Ferritin 154 Ref. range 10-232
Vitamin D 26 Ref. range 30-100
Vitamin B12 763 Ref. range 200-1100

What direction would you recommend for treatment? In the past, my doctors would have decreased my thyroid medication due to a low TSH, but this doctor is having me increase my Synthroid from 88 to 100mcg, and my Cytomel from 6.25 to 10mcg (as well as adding a vitamin D supplement), which treatment is more in line with my symptoms. I am starting to feel improvement (only a few days into this), but I'm concerned if it is wise to be increasing my meds when my TSH is already (slightly) low.

I would also appreciate help understanding what it means to have my Reverse T3 at the top of the range and if that affects my treatment. Also, is the knowledge that my thyroid antibody tests are high helpful for more than diagnosing Hashimoto's? Does being out of range imply that my treatment is not yet optimal? I will, of course, be discussing all this with my doctor, but would appreciate the input from the community of others who have learned from their own experience and study.

Also, I'm intrigued that my ongoing symptoms are much in line with what some call adrenal fatigue, yet my understanding is that this is not recognized as a real medical condition. Is there legitimacy to the claim that when our thyroid is low, one way our body compensates is by running on extra stress hormones? I'm trying to make sense of why I've had so much difficulty sleeping over the years although I'm so tired and fatigued. Is there value in having my cortisol levels tested, and which is the best test for this? My doctor said I could come in for a morning blood test if I want to. Thanks so much for any help with all this.

17260518 tn?1455212465
Thank you Barb135 for sharing the knowledge I'm sure you've worked hard to gain. For my Cytomel dose, I actually take 1 1/4 of a 5mcg pill using a pill cutter to get the 1/4 (so I just rounded up calling it 7mcg). Based on what I'm learning from others, I'm going to try taking 5mcg in the morning, then another 1/4-1/2 pill around noon to see if that helps with my daily afternoon slump. I will also try a new doctor and request testing for everything you mentioned. Having some direction to try gives me hope for improvement! Thanks again!
649848 tn?1534633700
I totally agree with increasing your T3 medication, however, I do not agree with increasing your Synthroid from 88 mcg to 100 mcg at the same time... First off, it's never wise to make more than one change at a time, because then you don't know which change made the difference... Secondly, your Free T4 is already at mid range, which is the target for Free T4 so increasing your Synthroid will only drive it higher, which you do not want to do...

Your body converts Free T4 into either Free T3 or Reverse T3, in your case, it appears that you're converting more to rT3 than to Free T3, which is another reason for not increasing your Synthroid dosage... The higher you get the Free T4, the more you're going to convert to rT3... Some say rT3 prevents Free T3 from entering individual cells.  From the reading I've done, that seems to be controversial; however, everyone seems to agree that having too high rT3 levels is not good.

The elevated antibodies, merely, confirm that you have Hashimoto's; they do not change your treatment and your treatment does not change your antibody count.

It's true that when thyroid hormone levels are too low, the adrenals will kick in to try to take up the slack and when thyroid hormone levels are adequate adrenal hormones should go back to normal, however this doesn't always happen.  You're correct that the medical community does not recognize adrenal fatigue as a medical condition, however, adrenal insufficiency is a medical condition.  Primary adrenal insufficiency is called Addison's Disease.  Secondary adrenal insufficiency is a pituitary issue. Both of these are relatively rare.

A single morning cortisol is pretty useless, because cortisol is highest in the morning as you're preparing for the day, then diminishes as the day goes on and you prepare for sleep... at least that's the way it's supposed to work.  A 24 hr saliva test is the best way to test cortisol levels.
So I have been feeling improvement since increasing my doses (particularly with mental clarity), but as you mentioned, it's tricky to now know which meds are the ones helping. (I increased Synthoid to 100mcg from 88, Cytomel to 10mcg from 6.25, and began 800 IU of Vitamin D.) Here are my lab results after 3 weeks on the new doses that I would like feedback about. (Is 3 weeks even  enough time on new doses to be rechecking?)
FT4 1.4 (from 1.3) range 0,8-1.8
FT3 3.3 (from 2.9) range 2.3-4.2
TSH 0.13 (from 0.39) range 0.4-4.5)
RT3 28 (from 25) range 8-25

Whenever I'm feeling improvement, I'm hesitant to change my doses to risk losing the ground I've gained, but I'm wondering if the rising Reverse T3 and declining TSH indicate that I need to reduce my Synthroid, or if these numbers are probably OK. (I'm new to checking my Reverse T3, so I'm not very familiar with how significant or not it is.)

I also requested a 24 hour salivary test which my doctor was willing to let me do, but he doesn't usually do them and isn't very familiar with working with it. Any help with interpreting the results would be appreciated!
7:30am- 0.548 (am range 0.094-1.515)
11:45am- 0.134
6:00pm- 0.046 (pm range <0.181)
11:30pm- 0.079 (range <0.112)
Is there an optimal place to be within the ranges? I'm looking for a connection to why over the years I wake up tired, have low energy, yet have trouble falling asleep at night. I suspect the fact that the final reading of the day increased instead of decreased may be a factor in my ability to fall asleep. Is it even possible to adjust our own cortisol levels and pattern?  Thanks for any help!
Avatar universal
vitamin d deficiency, get corrected this fast. optimal range 50 - 70
Avatar universal
There are a number of reasons that may contribute to excess levels of Reverse T3.  So from my own experience it may be best to back off on the T4 med, to reduce the amount available to be converted.  Along with that it appears that you need to increase your T3 dosage, since your Free T3 is only at the middle of the range.  Doing that will help in two ways:  it will increase your Free T3 level and also improve your FT3 to RT3 ratio.  

One thing I see as a possible complication here is that your cortisol test results appear to show low cortisol.  From a source on cortisol, note the following:

"We noted repeatedly that those with healthy adrenal function will have the following saliva results:

8 am: at the literal tip top of the range
11 am-noon: in the upper quarter
4-5 pm: mid-range
11 pm to midnight: at the very bottom (literally)."

Another way to assess cortisol sufficiency is the following questions.  

1) Do you have a hard time falling asleep at night?

    2) Do you wake up frequently during the night?

    3) Do you have a hard time waking up in the morning early, or feeling refreshed?

    4) Do bright lights bother you more than they should?

    5) Do you startle easily due to noise?

    6) When standing from sitting or from lying down, do you feel lightheaded or dizzy?

    7) Do you take things too seriously, and are easily defensive?

    8 ) Do you feel you don’t cope well with certain people or events in your life?

Of the 8 questions how many times would you answer yes?
Thank you for your reply. As for the cortisol questions, I answer clearly yes to 5 of them, and somewhat to 2 others. Is there a way to directly treat these subclinical levels of low cortisol, or do I just try to indirectly help it though improving my thyroid treatment and trying to reduce stress in my life?
Avatar universal
Your symptoms and your saliva cortisol results point to cortisol insufficiency.  Also note that it is recommended to resolve any cortisol deficiency even before starting on thyroid med.  

Yes, there is a way to treat cortisol insufficiency: hydrocortisone.   A trial dose of it taken 3 times a day would be used to determine the effect on your symptoms.  If that proves beneficial then your dose would be adjusted to achieve optimal dosage.  Along with that you would need to take adequate DHEA-S to achieve a good balance and offset any side effects from the cortisol.  

So what do you expect your doctor would respond to a request for a therapeutic trial to check for cortisol insufficiency?  
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