“Woozy” Hyper? Thoughts please

[chippydippydog]

Hello guys, could you give me your thoughts on how I may be best to move forward.

I’m on 75mcg of Levo and 18.75 T3 daily. My TSH has been this suppressed for years.

I started adding in T3 back in October last year. And at the same time started to decrease my Levo dose. I was on 125mcg of Levo before starting T3. This was on the advice from my NHS Endo.

My ferritin, folate, Vit D, B12, magnesium are all good in range.

I have however felt “woozy” for a fair while now, maybe two years. My BP is ok, sometimes elevated (around 145/90) but sometimes (around 127/70) so not constantly up, my blood sugars are always good. My cortisol levels are within range (did a 6 point saliva test approx 6 weeks ago).

I’m wondering whether I could be hyperthyroid? I have been experiencing ectopics and random fast heart rate too (over last 6 months or so). Could this be since taking T3? I looked up symptoms of Hyperthyroid and they do fit.

I just (like everyone one else) want to get my doses right, and feel well.

I’m thinking to reduce my Levo further maybe to 50mcg daily whilst keeping my T3 (Cytomel) at 18.75, in the hope that my TSH increases. The Endo said he would like to see my TSH nearer to 1.

I did my blood test with timings in accordance to advice given on here.

If you need more info from me please let me know. Thank you all 🙏

p.s. I will try and attach my latest blood results too

[SeasideSusie Remembering]

chippydippydog

I’m wondering whether I could be hyperthyroid?

That's impossible. You are hypOthyroid which is why you're on thyroid hormone replacement, you can't become hypERthyroid but you can become overmedicated. However, to be overmedicated your FT3 would be over range and yours is far from it.

Don't go by the TSH. That test is useful for diagnosis of thyroid disease but once diagnosed and on thyroid hormone replacement it's the FT4 and FT3 results that are important, FT3 being the most important.

I’m thinking to reduce my Levo further maybe to 50mcg daily whilst keeping my T3 (Cytomel) at 18.75, in the hope that my TSH increases. The Endo said he would like to see my TSH nearer to 1.

Does your endo know you are taking T3? If so and he is happy for you to do so one assumes he knows about T3, what it does and how to interpret test results when on combination replacement hormone.

When on T3 it lowers, even suppresses TSH, that's just what it does.

If you reduce your Levo it will reduce your FT4 and very likely reduce your FT3 level as well depending on how much natural conversion you have. You will probably end up feeling very unwell.

Your current FT4 result is 39% through range and your FT3 is 58.11% through range

[Calculator here: chorobytarczycy.eu/kalkulator ]

I am on Levo plus T3 and I would be unwell with those results, they would be too low for me. I wouldn't be surprised if you feel "woozy" because you are undermedicated.

I need both FT4 and FT3 fairly well balanced around 60-70% through range. Some people on combination replacement do well enough with a low FT4 as long as FT3 is in the upper part of it's range. It takes a lot of gradual tweaking to find our sweet spot and it doesn't look like you're there yet.

[chippydippydog in reply to SeasideSusie]

Thank you for your reply. It was the Endo that suggested I would benefit from T3 (self funded/purchased though). He is an NHS Endo in London and isn’t easily accessible.

I feel very much on my own with getting myself well. If I had a professional who I could interact with occasionally it would make all the difference. It’s finding “the right one”.

Would you suggest I increase T3 a little? I’ve been on this dose 18.75 daily (3 doses) for around 5 months now. Or should I go up on the Levo?

The Endo said to reduce the Levo once I start on T3, which I have from 125 to 75, but didn’t say by how much to go down or by how much T3 to add. He expects me to go purely on blood results. Sorry, I know this sounds confused and unsure.......that’s because I am confused and unsure 😔

[SeasideSusie Remembering in reply to chippydippydog]

chippydippydog

The Endo said to reduce the Levo once I start on T3, which I have from 125 to 75, but didn’t say by how much to go down or by how much T3 to add.

To be honest, I don't think this endo knows what he's doing. Many endos who suggest T3 haven't got a clue, they tell patients to reduce Levo by far too much, they start them on far too high a dose of T3, they end up completely messing things up for the patient then tell them that it doesn't look like T3 is helping them! One would have hoped that if he told you to source T3 (and why wouldn't he prescribe it if he thinks you need it and is happy to monitor you?) then he'd also tell you how to start taking it.

When adding T3 to Levo, we reduce Levo if our FT4 level is over range or high in range. If it's only about 70% through range (say about 19 with a range of 12-22) there is no need to reduce Levo, it's best to just add the T3 then see what happens, adding T3 will reduce the FT4 so if you also reduce Levo it can take the FT4 level too low.

If we do reduce Levo then it's usual to only reduce by 25mcg.

When we add T3 we start low and go slow, so we start with 1/4 of a tablet, let our bodies get used to it (it's a potent hormone) then if all is well after a couple of weeks add a second 1/4 of a tablet. I was very cautious when I started adding T3 (self medicated, no doctor involved) and took it very slowly and tested when I got to 1/2 a tablet of T3. We should wait 6-8 weeks after any dose change before testing as we need our levels to settle, some people need even longer.

Much experimenting and tweaking is involved, lots of fine tuning is needed when using Levo plus T3. We're all different in the balance that we need and where our levels need to be for us to feel optimally medicated.

He expects me to go purely on blood results.

To a certain extent.

It's important to keep FT3 in range.

FT4 can be wherever you need it to be, some are fine with low FT4 and others need it higher up in the range, it's something you have to find out yourself.

TSH is not important whatever he says, it is going to be very low or suppressed purely because you're taking T3. If he has other patients on T3 he will have seen this, if he insists that TSH comes into range then he obviously doesn't care about how his patient feels.

Would you suggest I increase T3 a little? I’ve been on this dose 18.75 daily (3 doses) for around 5 months now. Or should I go up on the Levo?

TSH: <0.005 (0.27-4.2)

FT4: 15.9 (12-22) = 39% through range

FT3: 5.25 (3.1-6.8) = 58% through range

If those were my results I'd increase the Levo, this will increase your FT4 and depending on what natural conversion you have then your FT3 will also increase. I'd take is slowly and increase the Levo by 12.5mcg and retest in 6-8 weeks, see where your levels lie then and decide on the next step. I'm guessing that your FT4 will have increased by up to a couple of points, possibly to around 17-18. Come back with new results at the time and we can see what might be the next step.

If you only want to test TSH, FT4 and FT3 then the cheapest way is with an NHS lab who does this test for the general public for £26.10 - details here:

MonitorMyHeath - thyroiduk.org/help-and-supp...

MonitorMyHealth's equipment doesn't test TSH that low, I think you'll find it comes back at 0.01 - that's what mine is with MMH and with Medichecks it can be <0.005 like yours.

By the way, although your Vit D isn't bad, the Vit D Society and Grassroots Health both recommend a level between 100-150nmol/L. Do you supplement?