Help with what to do with meds:

[misscliocat]

Hey all, you all seem to be most thorough and helpful and I am once again asking for your expertise opinion on what to do...

I’m on a custom made T4 dose of 143 since March of last year. Again, there is no t3 in this. I thought I needed to lower this as my sleep has always been bad, hair loss, and I’ve lost weight on the last few months (I also had mono, go figure). I’ve tried fighting that my TSH means nothing because it’s gone from .26 to 5.5 to now 1.5 all within two months (ad on the same dose, taken the same way).

Two weeks ago my labs were this:

Tsh: 1.5

Ft4: 1.4 (range .8-1.8)

Ft3: 2.3 (range 2.3 - 4.2)

I’m currently based in the US so the ranges appear doffeeent, FYI. But I need assistance and not one doc will listen. I’ve also found that I have a ‘lobulated’ pituitary gland which is also something I’ve vouched for docs to look into as I feel something is going on in there. However, none seem concerned.

So, my question, I’ve met some women post thyroid cancer that are on low doses of 100 mcg and felt their best that they ever have.

I thought going to a custom dose of 135 and maybe 5 of T3 would help but I’m scared. My doc wants to raise but I’ve been on higher meds and felt really strung out, but my symptoms are these:

My body heat drops very low in my sleep.. and I’m generally internally bone cold. I only feel better when I awake and take my medicine but I don’t feel warm. Maybe two capsules throughout the day?

I’ve had a lot of numbensss and tingling, not sure if calcium even though my calcium is right smack dab at top of range.

Hair loss, still.

Restless sleep. If I sleep, which has been the struggle for four years. The back of my eyes literally ache.

NON STOP YEARS OF HAIR LOSS.

So, if anyone can please tell me if they’ve experienced these or maybe regardless of the labs, should I lower? The lowest I’ve done was 125 but it was after being on 125 and that was rough, but it could have been my body trying to readjust.

Please, I’m desperate and would appreciate all thoughts. Thank you.

[misscliocat]

ALSO! my face has been FLUSHED in the past month or so. I’ve never had this issue and a derm said it’s roaacea but I know in my heart it is not. This is a new symptom I wanted to add.

[greygoose]

If you lower your T4, your FT3 will go under-range. And, it's low T3 that causes symptoms. You obviously don't convert very well, so in your place, I would add the T3.

[Marz]

Thyroid hormones need good levels of B12 - Folate - Ferritin & VitD to work well and for good conversion. Have they been tested ?

[misscliocat]

So maybe keep it and just add the T3?? Ugh. I hate this... and as for the b12, my b12 is HIGH. I don’t know how but I also have the MTHFR gene so I take folate... not sure what causes that but seems kinda prominent amongst the thyroid community, unfortunately . :/

[RockyPath]

Mononuceluosis is a sign of weakened immune system, which is a further sign of your hypothyroidism. All of the symptoms you are describing can be attributed to hypothyroidism. If you don't convert the LT4 well, it won't be giving you the T3 you need. It will be producing rT3 all through the day on a circadian cycle with a peak after your get up (feel really bad, weak) and a nadir in the early evening (perking up a little bit before going to bed; but then, alas, cannot sleep). The standard dose of LT4 is 125 mcg for a person between 9 and 10 stones, or around 135 pounds (lean muscle and viscera; fat doesn't count as it has little metabolic function). Are you tall and muscular? If not, I would hazard to guess you are overmedicated on a hormone that you cannot convert properly. The standard procedure (I found this is a clinical article) is to reduce the LT4 by 50 mcg and add 12.5 mcg of LT3. That should make you feel better.

If you feel better on that, you might feel best on 25 mcg of LT3 and zero levothyroixine.

There are numerous genetic polymorphism, both DIO1 and DIO2, that result in poor conversion of LT4 to T3. I have a DIO1 polymorphism. I also produce antibodies for which nobody tests on a regular basis, so nobody noticed that I have autoimmune thyroiditis. And Bob's your uncle!

[misscliocat in reply to RockyPath]

How are you so good at this?!? I’m actually in pounds (lost some weight) and also 5’9.... I’m tired of feeling like this and feel soo off. For four years post thyroidectomy. The last time I was ona lower dose (synthroid 137), I had ballooned but I do like the compounded mixture better. However, I feel like these symptoms are hypo like and I’m beyond devestated to lower... but it appears that many do better on a lower dose... so maybe dropping the 7mcg and starting with a consistent 5mcg of T3 be best? I’m desperate... I feel like I’ve lost years.... thankfully, the mono is gone (occurred during a rough patch of stress) but I’ve been having off symptoms like the hands and feet being bone chilled and the face flushing... doc says it’s rosacea even though I’ve never ever had a flare up and find it when more hypo like. I appreciate and and ALL feedback/knowledge/opinions... thank you!

[misscliocat in reply to RockyPath]

Also, I think I’d have to take the T4 as I am sans thyroid but I’m open to what you’re saying. This is very interesting... I am rather lean but feel I’ve lost muscle in the process of this... and that nadir? YES. I ONLY feel good at night yet can not sleep nor do I recall dreaming (always had good dreams). T3 is always in the dumps... sometimes it jumps up but not much at all.

[misscliocat in reply to RockyPath]

Hey there, I was wondering, how does one get tested for these genes? I feel like over here I can’t find an answer but I’ve heard of both. Thank you!

[RockyPath in reply to misscliocat]

I apologize for what I'm going to describe because it's something most people would find daunting and hence not even venture to try.

I ordered a 23andMe Health and Ancestry kit, created an account, sent back my vial of saliva and waited for access to the raw data. It's difficult to find on their website but it's there. You're provided with a search bar and you have to type in a search term. I separately searched "DIO1" and "DIO2" and then I had to learn on my own that the rs numbers, the SNPs (single nucleotide polymorphisms,) that were returned were the interesting bits that make me different from the "standard" human. For examples: rs11206244 (D1-C785T), and rs2235544.

Clicking on the rs number took me to the HAPMAP, which was not especially enlightening. I then copied the rs numbers, one by one, from the 23andMe browser page of results and pasted into the search bar (by itself, no other terms). If something came up then I read the medical journal article. Often the article would speak of the minor allele and the major allele and how the minor allele did something different from the major allele. Other times they will mention A, C, G, or T alleles, and homozygous carriers versus heterozygous.

Sometimes I had to determine from HAPMAP, the master gene database, if mine was minor or major. This added a distinct layer of challenge, but I was desperate as I could barely walk around the house so I persisted while sprawled on the bed, laptop on my stomach.

An example of an article I found is here: academic.oup.com/jcem/artic...

The article takes quite a bit of critical thinking to find the application to one's physical experience with the levothyroxine, and I read scores of articles, saving them on the computer and printing them out so I could re-read them.

After a period of time which I could not begin to estimate due to my degraded cognitive condition, I began to assemble the pieces of the puzzle from the mountain of articles I found. There are actually a LARGE number of SNPs that have been found to influence plasma levels of TSH, T3 and T4, and by implication cellular production of the T3 needed to power the human system. I identified several that I carry that impair my conversion of T4 to T3.

As you can see, this was not a simple matter of going to a lab and obtaining a report.

The strangest thing is both my primary care physician and my board certified endocrinologist thought my condition to be extremely rare, but when I spoke to a young, recently-trained pharmacist about my impaired conversion, she seemed quite familiar with this challenge to finding the right treatment, as though she sees it frequently. I suppose that since pharmacists are not permitted to practice medicine, they are bound to silence when their clients exhibit declining vitality after starting on levothyroxine.

I don't know that you need levothyroxine because you have no thyroid. My labs since stopping it show plunging levels of free T4 but the endo isn't concerned. As long as I have T3 every day I'm fine. The T3 has a half life of 24 hours or more, so even if I miss a day there's still some there floating around. I suspect that someday researchers will find that there are other organs in the body that store a bit of T4, just as we now know that there are brain cells in the heart and gut.

I'm finding that I need less and less T3 as my body adapts to having it freely available. I'm using my morning resting heart rate as a measure, as it would dip below 47 beats per minute, (which sets off alarms on heart monitors), when I was low on T3.

[RockyPath]

If you’re in such bad shape on all that LT4, a tiny bit of LT3 (5mcg) isn’t apt to make a dent in your problem.

The clinical study I found took away 50 mcg LT4 and added half of a 25 mcg tablet (12.5 mcg).

I think I understand your weight is around 135 pounds. Your full replacement LT4 dose would be 125 mcg. Take away 50 and that leaves 75 as a new LT4 dose, augmented with 12.5 mcg liothyronine sodium. According to the literature that would be a place to start. This ratio gives you an idea of the potency of liothyronine.

Because of the high LT4 dose you are on, a 5 mcg tablet of LT3 will be like a street protest consisting of only two people. Your body won’t notice, and it will look like the idea failed. This is how clinical trials of combined therapy were tested in the past. They proved nothing because they used ineffective LT3 doses,

You should notice something within a week.

From the manufacturer literature with the bottle of tablets, straight LT3 is indicated for treatment of total thyroidectomy. If you have a heart condition (a common byproduct of hypothyroidism) or are “elderly” you may have to titrate the dose in increments of 5 mcg per week.

The standard replacement dose is 25 to 75 mcg daily.

I’ve been forced to read mountains of medical textbooks and clinical research in order to understand how to treat my condition. The endocrinologist didn’t know what to do and he was making me sicker and sicker with each increase in LT4.

[misscliocat]

So, update! In the course of a month, no change to medicine, my TSH has gone to 9.96! (No change in medicine taking, brand), and FT4 has dropped. Here I thought lowering is the answer but I’m scared and my doc quickly upped my meds, but already I feel hot and uncomfortable. Literally, FT3 is low on the range and the FT4 range starts at .7 and mine was .9. Is this normal?? What would one recommend? I have T3, albeit scared to take it. And I’m extremely scared of raising my dose.