Continue with t4/t3 or Levo only: Hey my lovelies... - Thyroid UK

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Continue with t4/t3 or Levo only

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Hey my lovelies,

My struggles do continue and I would like consult something with you.

I am really confused.

I have been on 125 t4 and 7.5/10 t3 and started to develop palpitations, breathlessness, nervousness and insomnia, but I also did feel good and more normal (however was still experiencing hypo symptoms too).

My levels were: ft4= 76% range, ft3= 46% (ft3 false low, test done after 25 hrs).

I tried to ride it out, lasted 4 weeks and palps were getting worst and I became incredibly fatigued on top.

I reduced t3 as this normally and it did nothing. Out of desperation, I took less Levo over a week and after 7 days I felt a bit more normal, but hypo.

I ran bloods after reduction of Levo and t3 skipping, only after a week, because I needed to know if I'm high or low.

Results I got were: ft3 and ft4 both =24%. I was experiencing neck choking and a lot unpleasant symptoms.

I couldn't go back to 125/7.5 or even 5, so I tried 112.5 and 5 last Saturday and continued on until today.

Last night it did hit me again, after 4 days - no sleep, anxiety, heart palps, faster pulse.

Went to my consultant, he is convinced I need to keep reducing levo and introducing t3.

As I reduce more Levo, I do become more hypo.

I have two options : try doing as the consultant said it go back to Levo only.

I was on Levo in March, 150, ft4 was high in range and ft3 below mid range after 3 weeks. Then at 5 weeks something happened and ft4 jumped to 90% range and ft3 to 75% range. My tsh was a bit higher so didn't indicate a flare. I discontinued Levo after it. Gained about 7-8 kilos since ndt to Levo to combo change...

Thanks for your help in advance 🤗

Cuppa

12 Replies

Hey Cupofcha 🤗 This really is a rollercoaster for some of us. I think if it were me I’d just hold on your current dose, don’t try to change or increase anything. Once you’ve held the same dose for at least 6wks then test, then do very small increases and increase one at a time and 6wks between each increase.

I don’t know why you’ve become so sensitive but I liken it to my coffee and wheat intake. I used to drink both with minimal symptoms. Then I stopped both now, it’s taken me a long tome to find the sweet spot with both, so that I can tolerate some intake without repercussion. Not that I need them but sometimes it’s nice. So now I know that I can’t have caffeine after 10am and I can tolerate low levels of wheat in foods such as sausages or gravy - hidden wheat that one wouldn’t used look for but I can’t stomach breads and pastas.

So it’s all about finding your sweet spot but you need to do that from a state of stability so take the dose that doesn’t give you anxiety or palps, hold it even if you feel Hypo. Then test in 6wks and post results and we’ll go from there.

Much love and hugs! I wish there was an easy formula! But it seems that what works for one doesn’t always work for another 😞

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Hidden in reply to NWA6

Thanks Paula 🤗 it is indeed a mystery.

I think lowering my t4 had something to do with it for sure, because otherwise I had no problems.

Trying 100 now and 7.5 according to my doc,fingers crossed. I'm definitely quite hypo, but I don't know if my palps are 🤔🙂 time will tell

Hi cupofcha, why did you stop your 150 Levo after five weeks with FT4 at 90% and FT3 at 75%, perhaps that ratio was good for you. What was your TSH at that time and, more importantly, how did you feel?

Perhaps someone more knowledgeable will come along with more advice x

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Hidden in reply to Gingernut44

Hey Gingernut, I have stopped because I felt overdosed on it. I had a lot of hypo symptoms on Levo only , but I do realise that I didn't give it enough time perhaps...I could have lowered it at first a bit, but when I did lower to 137, I started to feel really bad and put more weight on. Also on Levo only I had this horrible neck choking feeling

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Gingernut44 in reply to Hidden

Oh I see, I feel for you. I'm still struggling to find my ideal dose- happy days ☹️ I hope you find the answer soon x

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Hidden in reply to Gingernut44

Thanks Gingernut, best of luck to you, you will get there x

Might want to look into possible low ferritin level ? And other vitamins

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Hidden in reply to sarosent

I need to check my ferritin, iron is top range, ferritin was under mid-range but should be improving as I have been supplementing a lot. B12 d top range most of the time, will be checking them too next month. Folate always excellent

I had "neck choking" while on T4 (synthyroid) only and T4/T3 and I still had "neck choking" on Armour Thyroid at which point I started with mild hand shaking and random palps.

Recently I allowed my Endo to remove me from Armour Thyroid (never asked for this pill) earlier Endo put me on it and new endo just switched me to 88mcg synthyroid and 10mg cytomel and palps went away, shaking disappeared and my neck muscle hasn't choked me yet.

My TSH was <.014 and my Ft3 and 4 and T3 are pretty low and still had hyper symptoms and by all accounts my levels are so low I have been told I need more meds and honestly don't think I could increase my meds with my shaking and palps.

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Hidden in reply to Batty1

This is really interesting. I also feel stuck not being able to increase now, but maybe I need to wait more time to do that. How are you feeling on 88 and 10 otherwise?

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Batty1 in reply to Hidden

Oddly I feel good after 3 yrs of back and fourth fighting Endos over lab results that have NEVER been good, I mean I never had a normal TSH it's always been in the toliet along with all my other thyroid numbers. The "Only" time I had a high TSH and FT4 was after thyroidectomy and one test showed TSH was 20 and then 8 week later test showed it was over 4 and still crazy high FT4 on both test (I packed on weight in the first 1.5 yrs after thyroidectomy)....Don't try to explain that to Endo they say Weight gain has nothing to do with thyroid....lol sure it doesn't!

Anyway below is my labs before recent dose change I retest end of this month at which point I have to go on low iodine diet and Thyrogren injection to get full body scan (my low risk thyroid cancer) not so low risk after all. My husband is ticked off.

Aug 2, 2019 Armour Thyroid Results (I was on Armour Thyroid for 1yr)

Tsh: <0.014 (0.27-4.20)

Ft4: 1.10 (0.93-1.7)

Ft3: 3.380 (2.0-4.4)

T3: 1.21 (80-200)

For what it's worth I'm a crazy scheduled individual and because I've split previous Armour Thyroid (2 grain) took one AM early and the other pill later I kept up the tradition and I now split my 88mcg synthyroid in half and take half with 5mcg cytomel early AM and take the other half along with the other 5mcg Cytomel late morning.

For me it works or maybe it's because I hate change..lol no tellin.

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Thanks Batty, really appreciate all this information! You have gone through a lot!

I am puzzled about the fact that on 150 or 137 t4 and 5/7.5 t3 with it had no palps, and then I drop to 125 t4, feel better in many ways, but I start having palps! :(

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