Please help: Need help on which direction to ta... - Thyroid UK

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Please help: Need help on which direction to take; post has labs.

misscliocat profile image
10 Replies

Hello everyone!

It's been a minute but I have some updates as well as asking for feedback on what else can be done to tweak.

I had my year follow up in August and *knock on wood* all was well! At that time I had switched from Tirosint to 175 mcg of Synthroid only.

The higher my dose of T4 alone, I would feel ...ok. My FT4 was high but over six weeks it had dropped to the middle/high-low of the range and my FT3 was actually doing pretty well comparatively speaking. However, my TSH was down to .01 on T4 alone, which is odd because back in the spring my TSH was well over 2.0 on that same dose.

Anyway, I've been four weeks on 150 mcg of Synthroid (175 6 days a week/0 on Sunday) and had labs again through my PCP.

TSH: 0.08 (i don't have a range, unfortunately) FT4: 1.1 (range: .70-1.48) FT3: 2.3 (range 1.71 - 3.71)

These labs were taken seven hours following my dosage.

My joys and conerns are, I feel MUCH better emotionally since not only switching from Tirosint but also in lowering my T4.

My energy got a bit better after three weeks on the change also but my sleep still doesn't happen and probably won't change; I sleep a bit longer now.

Physically, hair loss still (BADDDDDDD) while I feel and look bloated and feel constipated (TMI alert).

Those couple of later symptoms were much better on a higher T4 dose.

My question is what do we feel would be the best route to take at this point. My endo has a new fellow that I get pawned off to and she has already received my tactful wrath for not listening to me. She does not want to move or add in T3 because of where my TSH is, even though I have advised it barely moved from dropping 25 mcg of T4. She states she will allow 5 mcg of T3 if we lower the T4. If I'm already feeling bloated and such, is it smart to lower the T4 at this point? I feel either just raising it to 163 mcg may be the tweak or adding in a bit of cytomel?

Just suggestions needed all, and any and I will take. Thank you all in advance!

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misscliocat
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radd profile image
radd

misscliocat,

T4 is just over half way through range and T3 just under..

Adding either med will lower TSH further but many members need a lower than range TSH in order to function well.

I would go with lowering the T4 and adding T3 but I don't think the 5mcg that your endo is offering will be enough. I would say at least 10 mcg to start with but introduced slowly in 5mcg a week apart, to ensure there are no ill effects felt. You could even split the 5mcg into 2.5mcg and take am & pm the first week (away from foods, sups, etc as you do your Levo).

After six weeks test and if T3 is still low, you could add another 10mcg in 5 mcg increments a week apart. Just adding more T4 doesn't always make us feel better, as it is getting the meds to actually work for us that counts. Medicating a little T3 has been shown to help additional T4 convert to T3 so you actually improve on the levels in addition to what you are medicating.

Thyroid meds rely on optimal nutrient and iron levels, adequate and balanced cortisol supply and low thyroid antibodies. Addressing deficiencies and any gut issues, etc will help thyroid hormone work better.

Ask your doctor to test Vit B12, folate, ferritin, Vit D and post results complete with ranges (numbers in brackets) for members to comment.

If you have Hashi are you gluten free ? Are you supplementing selenium known to help with T4 - T3 conversion and reduce TPOAb (if you have any) ? ? .. Are you supporting the adrenal glands ? ?

Eddie83 profile image
Eddie83

Have you had any testing for minerals & vitamins? You won't convert well if you are low in things like selenium and iron.

Your doc is like many of them: overload on T4, ignore T3. Your FT3 is only 29% up in its range; needs to be 50% or better. With the Abbott T4 full-replacement recommendation of 1.7mcg/kg body weight, your T4 dose is high unless you weigh around 103 kilos/225 lbs.

TSH is usually irrelevant; what matters is your FT4 and FT3. Apparently your doc is more interested in treating your TSH test, than your symptoms! Unless your nutritionals are tanked, I suspect you would do much better on NDT, or on a T3+T4 program where your T3:T4 ratio is between 1:4 and 1:10.

I always recommend that patients have the full panel TSH/FT3/FT4/rT3/TPOAb/TGAb. Your antibodies should have been checked by now, since Hashimoto's is the most common cause of hypothyroid. Hashi's has its own set of symptoms that need to be looked at. Getting rid of toxic foods and persistent pollutants that trigger antibodies, is a step most allopathic docs don't take.

If your doc refuses to give you enough T3 to make a difference, you do have the option of buying off the web.

Learner1 profile image
Learner1 in reply toEddie83

Have your reverse T3 tested. It can rise with stress as T4 can convert to it, rather than T3. As your T3 is low, it's a likely hypothesis. The treatment is T3 only until your rT3 normalizes.

The antibodies are worthwhile to investigate, too.

Good luck!

misscliocat profile image
misscliocat in reply toEddie83

love this. and you speak such truths; i'm only 155. :/

Eddie83 profile image
Eddie83 in reply tomisscliocat

I thought so. You'll have to gain 70 lbs so you can fit that T4 dose. 😊

misscliocat profile image
misscliocat in reply toEddie83

crazy, right??? my brother who is a doctor says it's rare for him to see patients post-TT on a dose higher than 150! and for whatever reason, 150 was the amount i was started on after RAI... not sure where that came from! ha, but strangely, the lower i go on T4, the worse I feel... so who knows??

Eddie83 profile image
Eddie83 in reply tomisscliocat

I am confused. In your original post, you said you felt better emotionally when lowering T4. Here, you say you feel worse. Two thoughts:

1) It seems to me you need to be on a comprehensive nutritional supplementation program. I am esp. concerned about iron & selenium.

2) My experience with T4 therapy was: my T4 full-replacement dose is somewhere around 130mcg. But when I was still on T4-only, I would start getting nasty effects above 88mcg. If I would get as high as 112mcg, I would feel as though I wanted to jump out of my skin ... anxiety was absolutely unbearable. I would feel OK if I quickly dropped the dose, but I could not get to the euthyroid state on only T4. Things smoothed out within a couple months after I added in T3. It took a while to find an ideal dose, but now at T3+T4=15+75 I'm doing quite well. Don't know this for a fact, but I am guessing that getting T3 up helped adrenal function since adrenals do require a reasonable level of T3 to function well. I think stopthethyroidmadness.com discusses this. I discussed this with my doc and he told me he has some patients who do better when they keep FT4 low in its range, and take enough T3 to get FT3 above its mid-range ... which describes me.

misscliocat profile image
misscliocat

Thank you all so much!

I actually did used to be on NDT. I think why it ultimately did not work for me is because of the low T4 in comparison to the T3, at least from my experience. What makes this trickier is that I no longer have a thyroid due to thyroid cancer, so it's been two years of misery and to put it bluntly, a total sh*t show. I honestly feel like I died the day they took my thyroid away.

I did feel alive on NDT but extremely fatigued as well... however, now I feel like a corpse. I don't smile, I'm exhausted, grumpy... but then I find the lower I reduce my T4, I feel somewhat better mentally (if that makes sense) but physically horrible. I don't even want to be photographed at all because I just look as tired as I feel. No spark to the eyes...

I did just have iron and B12 tested and strangely, my B12 is super high once again. I don't even supplement it any longer since this past July.

My labs for those are:

Iron: 341 (ranges: 70-310) B12: >2000 (ranges: 213 - 816)

*I did get a B12 shot just moments prior to the lab, so that may or may not affect it.

Ferritin is extremely low.

I also should add that I don't eat red meat so I'm all the more perplexed.

As for TPO, I didn't know I had hashi's until being on NDT. That is when my numbers jumped but since going back to synthetic they have been basically nonexistent. The last time I had RT3 tested was over the summer and it was mid-range but I don't know exactly where it was.

I guess I'm scared that lowering my T4 can cause some issues worse than I feel now... but I know how essential T3 is, extremely. The fellow doctor at my endo was saying how FT3 can sway throughout the day and I understand, but so can TSH. And jumping from 175 to 150 has taken a toll.

I could try lowering my T4 to maybe 137... and ask for 10 mcg of Cytomel. If taht doesn't pan out? I could attempt NDT once more and just accept that I won't feel good... something has just got to be better than this. I am so sorry for being so verbose and ranting but I'm so so so depressed and frustrated. You all that have responded are such sweethearts. I owe everything to you. And any further feedback would be IMMENSELY appreciated.

Clutter profile image
Clutter in reply tomisscliocat

Misscliocat,

My endo wants TSH suppressed <0.1 after I had thyroidectomy due to thyCa. My TSH is <0.01 and endo has reduced dose a couple of times but TSH has not risen. I refused to reduce dose further because although TSH has not risen both FT4 and FT3 dropped to less than midway through range.

It seems to me that 0.08 is good. Your FT3 could be higher. Perhaps your endo could raise T3 dose to 20mcg and reduce Levothyroxine dose by 25mcg.

misscliocat profile image
misscliocat in reply toClutter

Thank you so much! I agree, I find the Frees speak more volumes than the TSH. I find that on 163 of T4 alone, I do ok... This doctor has his fellow do all of the work and she's fresh out of med school and clearly doesn't know my unique situation... I just want to feel alive, which is what T3 does for me, and not just be alive, which is what T4 does for me. Thank you for such great feedback!

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