More and more meds..?: Hi in July last year, on... - Thyroid UK

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More and more meds..?

JAmanda profile image
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Hi in July last year, on 125 Levo my t4 was 25 (12-22) and T3 5.12 (3.1-6.8). I decided to try adding in T3 and reducing t4 (as it was high) and by January I was taking 100 Levo and 20 lio, all taken in one go, and my levels were 14.9 and 5.77. The lio is barely adding anything! I feel that I like t4 high to get good sleep so I added in 12.5 Levo per day, then I thought I'd add a further 5 lio per day to try to fix my severe exhaustion after exercise. So now I'm taking 112.5/25 - which seems a huge amount. I'm now spreading the T3 across the day and leaving a gap after taking Levo. Still got terrible dry eyes, no nails, dry skin, pains etc but am sleeping pretty well and am not fatigued in the day. Am I on the right course? I don't feel over medicated. I had terrible trouble taking tiny amounts of T3 but now seem to be able to tolerate any amount in one go or split - it's all fine. I don't understand! Shh don't tell my Endo but I'm not at all sure I feel better on T3 than before when just on Levo... Any thoughts?

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JAmanda profile image
JAmanda
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radd profile image
radd

JAmanda,

Hypo symptoms can be felt whether under or over medicated, or even with the correct dose but meds not working due to other factors such as low iron/high cortisol/etc.

Taking more meds can be counterproductive if they are not needed and you had FT4 levels over range. Also high T4 levels aren't always required when T3 is taken alongside. You have made too many dose adjustments in a short space of time to get an accurate picture of what is happening so if this were me I would reduce to 100mcg Levo, 20mcg T3 and retest in six weeks to see where you are at. Post results complete with ranges for members to comment.

Exhaustion after exercise isn’t good, indicating you are pushing your body too much too soon on meds that might have hit their peak hours before. For many the spacing out of T3 doses is kinder to the body and encourages better tolerance. Your stamina should improve when thyroid hormone can be better utilised by your body evidenced by when your hypo symptoms subside.

To get thyroid meds doing their job properly we need adequate iron and nutrient levels, otherwise we can end up taking more meds and still exhibiting hypo symptoms. If you have had ferritin, VitB12, folate and VitD tested recently post recents complete with ranges for members to comment. Otherwise ask your GP if these can be tested. Members use private labs when doctors are uncooperative.

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

112/25 is not a huge amount. You can’t judge the dose you need compared to what other people take. If you are very active as an example your needs might be greater. Have you tried gluten and/or dairy free? Also it isn’t an instant fix; takes a bit of time - even T3; to see improvements in some symptoms.

Lotika profile image
Lotika

Gosh, it never works out as we expect, does it?! Sooo complicated! I feel like my current dose has finally settled after feeling rubbish on it for 11 weeks I feel OK in week 12. I wouldn’t have left it this long, but the endo man is in charge. Here are some reasons why it might be the case for me, in the instance it is useful at all!

1. Went dairy free a few days before I started feeling better: I think I am now absorbing the meds really well, but before that I had been trying to recover from a course of antibiotics and I really wasn’t managing to absorb much at all and felt v hypo.

2. I may have accidentally taken 125 mcg rather than 75 mcg of levo for a couple of days(!) or I may not - dunno! And I had a cheeky taster of 10 mcg T3 one morning but no reason to be still feeling good from that a few days later.

3. This could be a plain old hashis swing.

4. Maybe it really did need this long - 12 weeks! - for the dose to sort itself...

So... I would stick with it until you are ready to test again, particularly if you don’t feel overcooked.

Agreed, it does sound like a lot of meds against the 125 levo you were previously on, which is why I am wondering a bit about absorption perhaps. I seem to be more sensitive to dairy since starting T3 at all. Could be a total coincidence of course. And then there’s the idea that we increase T3 and T4 falls off a cliff, unfathomably. I mean, I would have thought the opposite, but thyroid is bizarre.

Do you try not to have the T3 with food? I find that so difficult but think, again, there might be some difference in absorption if I am better behaved around that.

Interesting that the deckchair intervention (messing around with timings of dosing) helped for me, but not for you! If only we could all be a bit more similar in how we respond to meds!

It makes sense to increase the T3 to deal with exercise, so I see where you’re coming from and would likely do the same, particularly as exercise issues got me diagnosed as needing T3 in the first place!

I’m a bit confused that I actually feel OK at the moment and wonder if I am making it up! Testing again next week as if *this* doesn’t feel too bad, I’d at least like to know what it looks like in frees.

My husband has just accidentally dairyed me (the danger of being cooked for!) so I’m curious to see if it has a negative impact!

JAmanda profile image
JAmanda in reply to Lotika

Thanks @lLotika @Radd @Fortniteplayer. All good ideas. My vitamins are really ok at the moment - I take the B's and d3 +k2 plus lots of magnesium as I'm always just under n mag. I'm going to go down to 100/20 and really focus on taking each dose separately and on an empty stomach. I've stopped all caffeine - which I rarely see mentioned on here but many docs say you should. I'll remove the tiny amount of dairy I eat (although I think this has risks for menopausal women) and I guess gluten will be next. Thanks for the comments.

helvella profile image
helvellaAdministratorThyroid UK in reply to JAmanda

Afraid your attempt to callout has not worked! :-(

You have typed correctly (except a typo for the first one) - but you have to click on the member's name in the list that appears. Then the names change to blue. Otherwise, they are just characters and not callouts.

Lotika radd Hidden

JAmanda profile image
JAmanda in reply to helvella

Yeah I didn't think it worked - no list comes up on the iPhone. So it was a guess really. Thanks.

helvella profile image
helvellaAdministratorThyroid UK in reply to JAmanda

A list does appear if you are using Safari - but not sure about the HU app or other browsers. :-)

However, I have sometimes found that the list isn't visible to you as you type. (Can't honestly remember the circumstances in which that happens. Might be Android, or Windows or Safari or the HU app!)

JAmanda profile image
JAmanda in reply to helvella

HU app has quite a few glitches.

helvella profile image
helvellaAdministratorThyroid UK in reply to JAmanda

It does - which is why I have deleted it from my phone.

I only ever really had it there so I could help any members. But HU have not maintained it over the years.

JAmanda profile image
JAmanda in reply to helvella

I wrote to the support team about a really annoying thing - and they said 'yeah it's a bit glitchy I'd use the web version'! Lol.

SlowDragon profile image
SlowDragonAdministrator in reply to JAmanda

If not already on strictly gluten free diet, it’s always worth trying

Getting coeliac blood test done before cutting gluten out if not already had one

JAmanda profile image
JAmanda in reply to SlowDragon

I know but it's last in my list! I tried it for a month with no impact except it made me very miserable. My stomach hates most foods, and sandwiches are one of the few things that don't make me burp and f@rt! What do people eat for breakfast? I guess I need to be more creative. But my partner is Italian so pasta is a staple... it's not easy for me but yes it's next on my list to give a really good go.

SlowDragon profile image
SlowDragonAdministrator in reply to JAmanda

Breakfast. I make my own muesli with certified gluten free oats.

Gluten free bread in separate toaster......some gluten free bread is very good

in reply to JAmanda

The benefit of GF takes more than a month. So much good Gf foods available - warburtons bread, gf oats for brekkie; lots of stuff in the frozen section is gf (fish fingers, chicken etc.), gf pasta tastes the same (Sainsbury’s is the best I’ve found). Lots of cafes do Gf options too now :) I would say stick Gf out for at least 2-3 months. Also give a decent probiotic a go.

JAmanda profile image
JAmanda in reply to

Thanks - all good tips.

FancyPants54 profile image
FancyPants54

It's harder than hard isn't it!?

I'm all over the place with my T3. I don't feel any different to before. I can't work out what to do. I have atrial fibrillation so I have to watch my heart rate. I want it below 100bpm. It sits in the 90's most of the time. When I tried pushing my T3 up to 30mcg split dose, I ended up with bpm over 100, up to 120 a lot of times. But I felt nothing else. I had tried reducing T4 because although my last blood test was showing it in the 40% range, I was worried about where it was all going. I dropped to 100mcg a day hoping to reduce rT3 if that was a problem and increased the T3 to 25. I felt fine for a couple of days but then I just felt worse and worse, so fatigued I could barely function. That's when I tried upping the T3 to 30mcg and my heart rate went up too much and the fibrillation was more pronounced. So I had to drop back to 25mcg. Couldn't stand the way I felt so added the 25mcg Levo back in on Friday. I don't feel so terrible, but I do feel depressed, upset and physically exhausted at the slightest effort. I get this crippling back pain, unlike any back pain I've ever had before, if I try bending over to do something, or even leaning just slightly, it starts immediately. I'm OK if I stand up straight. I can't get anything done. The pain is so weird it sets my teeth on edge and my legs will barely move. But it's not like a pulled muscle or anything. Neither is it stiff. And it goes immediately I sit or lay down.

Like you, in desperation, I have made too many changes in too short a time. I will have to hold it here and start counting the bloody 6 weeks again from now. It's endless. I've had no success with thyroid meds at all for years and years. I feel sorry for us both. We didn't deserve this. At least you can exercise. I can barely walk.

JAmanda profile image
JAmanda in reply to FancyPants54

I'm sorry to read your story - yes it's really confusing and upsetting to feel you're not getting better with these meds that the docs tell you are just a simple replacement for what you're lacking.

I read here of people doing best on just T3 and I'll probably ask the doc if I can try that next. I don't find it makes my heart race any more (maybe a momentary flutter) and in fact if I wake up in the early hours and can't get back to sleep I take my first dose of T3 and sleep beautifully. I definitely feel my body runs out of T3 throughout the day. It would be great to have a sustained release T3 so you don't get peaks.

I'll stick with the 100/20 plan with T3 well spaced away from t4 and food for now - but I can't swear I won't add in a bit of T3 if my eyes start dancing and ticking.

Thanks your comments. I have back hip leg pain but there's really nothing in the MRIs. The physio says its neurological. I still think it will improve when thyroid is optimal- but who knows really, it could be muscular, vascular, cellular, neurological or bones - if only I were a doctor!

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