If these were your results what would you do? - Thyroid UK

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If these were your results what would you do?

WitchingHour2point0 profile image

So despite increasing my T3 dose my FT3 is staying at 5. My FT4 is falling.

My symptoms are mostly in check these days but the fatigue and malaise is creeping higher again and it's starting to inhibit what I can do.

(Noting that my estrogen is below range and I'm hoping to start HRT soon.)

I'm sporadic with supplements but know I need to improve all my vitamin levels.

I think I know what I'd like to do next but I'd love to hear your opinions.

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WitchingHour2point0 profile image
WitchingHour2point0
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22 Replies
TiggerMe profile image
TiggerMeAmbassador

If I were you I'd...

Supplement folate and B12... major players with your symptoms

Gradually reduce T3 back to 20mcg as throwing more into your system doesn't seem to help and your body seems to be dumping probably T3/T4 as a result... to much is as bad as too little.

Definitely get onto HRT as the symptoms you have are just as likely to be due to your low sex hormones having tried adjusting thyroid hormones without success...

I've just lowered my T3 by 5mcg and upped T4 slightly as now that the supplements have kicked in I seem to be making better use of T4 🤷‍♀️🤗

WitchingHour2point0 profile image
WitchingHour2point0 in reply toTiggerMe

Yes, I was thinking the same thing. The extra T3 is doing nothing.

Vitamins have always been sporadic for me. Even in 3+ years I've not got into a habit with them!

TiggerMe profile image
TiggerMeAmbassador in reply toWitchingHour2point0

This is the joy of adjusting T3 it is much quicker to show its hand and more forgiving to adjust than T4 I find, adding T3 initially is life changing but I found if you let your fT4 drop it really sets you back 🙃

I keep them by the kettle, bedside and by my toothbrush... most days something gets taken 🤗

Bearo profile image
Bearo in reply toTiggerMe

Today, for once, I remembered about my vitamins right after lunch. I was going to fetch them but made the mistake of sitting on the sofa for a minute. Then the cat jumped on my lap and settled down for a long sleep on this Yellow Weather Warning Saturday. And now three hours have passed and it’s gone four o’clock….and I dont like to take them this late!

TiggerMe profile image
TiggerMeAmbassador in reply toBearo

Ok, new plan... filthy day...sew the cat a neat little waist coat with pill pockets 😁and remember to make a thermos before sitting.... or how about putting your pills next to the cat food stash and then you'll be constantly reminded by your furry buddy 😅

You are right that B's and I think D are best before lunch... unless you want to pull an all-nighter then later could be handy 🤗

Bearo profile image
Bearo in reply toTiggerMe

That’s so funny, Eeyore!

TiggerMe profile image
TiggerMeAmbassador in reply toBearo

😁 so gloomy and wet here I'm cleaning the oven! 🤨

Jaydee1507 profile image
Jaydee1507Administrator

Did you keep any notes of how you felt on each dose? Sometimes adding more thyroid hormone isn't the answer and getting on top of vitamin levels can make all the difference.

Is there a routine you could put in place so that you remember to take your vitamins more regularly? Put them out in the kitchen or where you sit down to remind you that they need taking?

It would pay you dividends if you can regularly take the vitamins as otherwise your thyroid hormone cannot work properly. Its a catch 22 situation.

As you have positive antibodies have you tried a strictly gluten free diet? Dairy free may also help the mailaise & fatigue.

I might even suggest going back to 125 Levo & 20mcg T3 (split into 3 doses) which could help your heart rate.

You've made several increases/changes in a relatively short space of time. Sometimes things need a lot longer to settle in and for your body to wake up + optimal vitamin levels.

Hang in there.

Fruitandnutcase profile image
Fruitandnutcase in reply toJaydee1507

Jaydee1507 has a very good point. You really do need to take your vitamins etc regularly if you want them to work.

I bought a large weekly pill box from Amazon and I put my regular pills for inflammatory arthritis and blood pressure in there along with the vitamins and minerals I also take - lots, that’s why I have large sized spaces. I spend one morning a week sorting out the whole week and it sits on the dining table next to me at breakfast when I open up each day when I eat breakfast ( I’m not taking levo) but no doubt you can sort out a time that is suitable for you.

I also went totally gluten free - I was in remission from Graves’ disease but then developed inflammatory arthritis and I decided I was going to do something to see if I could dampen down the inflammation.

I used a Medichecks fingerpick blood test after about three months and my antibodies had started to come down so I carried on and every time I retested they had dropped a bit more until they are now very low and nothing on earth would make me eat gluten again - I didn’t get tested for coeliac before going GF though. I had done that a home test a year or so previously after I had eaten bread, croissants and pains au raisins all way from Calais to the Mediterranean and I was so puffed up a friend didn’t recognise me in a photo I took of myself - anyway that coeliac test was negative - I think I’m probably intolerant.

The other thing I did was to keep a little notebook with details of the various quantities of the thyroid drugs I was taking and how I felt at each level as well as all my blood test results. That proved to be really valuable it meant when I needed an increase in Levo as part of my block and replace I was able to show my consultant and also later on my GP - who wasn’t keen to interfere with my consultants prescribing. The first time I needed an increase the GP prescribed amitryptiline - my consultant laughed and said ‘wouldn’t work’ and the next time I suspect the consultant had authorised a slight increase if I went back to the GP (my surgery and hospital file share) because after producing my figures and how I felt the GP grudgingly increased my levo although she did say she didn’t want me to become hyper again. So notes on how you feel with the various increases and decreases are really useful.

WitchingHour2point0 profile image
WitchingHour2point0 in reply toJaydee1507

My antibodies have been very much higher; dropped to their lowest in July after 6 + months gluten free. I spent the last 3 weeks eating gluten as a mini experiment and they've increased again so I think I've proven to myself I need to be GF.

I've never been able to find a stable dose; if I go more than 12 weeks without increasing my symptoms become debilitating. It's been very frustrating.

Jaydee1507 profile image
Jaydee1507Administrator in reply toWitchingHour2point0

Its not so much even about antibody levels with being gluten free. More how you feel.

Again, without OPTIMAL vitamin levels we canno use our thyroid hormone properly.

Have you had optimal vitamin levels all this time because I suspect not ?

I would go back to 125+20 split, gluten free strictly, also dairy free + optimal vitamins and see how that feels.

WitchingHour2point0 profile image
WitchingHour2point0 in reply toJaydee1507

I have up until about a year ago. I got lazy with vits once they'd be optimal for ages.

I tried dairy free and felt no improvement so I'm unlikely to try it again any time soon! Gluten free has been noticeable enough to keep going with. :)

StanleyThyroid profile image
StanleyThyroid in reply toJaydee1507

I have a pill app that reminds me to take vitamins levo and adhd meds. It keeps going off every 5 minutes until you confirm that you have taken them. Annoying but efficient!

WitchingHour2point0 profile image
WitchingHour2point0 in reply toStanleyThyroid

I set an alarm for my afternoon meds but I tend to dismiss it as soon as it goes off... At forget to take them. 😂

Fruitandnutcase profile image
Fruitandnutcase

Sometimes it’s just really hard to keep going. Glad the gluten free has helped you. Have you looked on this website coeliac.org.uk/home/

I found it really helpful when I was starting off. They produce a directory that must contain details of every GF food, ingredient, restaurant etc known to man.

WitchingHour2point0 profile image
WitchingHour2point0 in reply toFruitandnutcase

Lord knows it's a real battle. Proper endurance stuff. My resilience and stamina have certainly been tested.

I think I looked at the website a few years ago but really should look again. Thanks for the prompt. :D

Dunkenb profile image
Dunkenb

Have you ever had reverse T3 tested ?

WitchingHour2point0 profile image
WitchingHour2point0 in reply toDunkenb

No, I've never bothered given how many reasons there are for RT3 to be high. I don't think it's relevant enough to warrant the cost of testing for me.

Dunkenb profile image
Dunkenb in reply toWitchingHour2point0

I was wondering if the amount of T4 you are taking and not converting to t3 ( I’m assuming you don’t convert well) is creating high levels of reverse T3 that is blocking the receptors your T3 uses . An increase in T3 if the receptors are blocked would do nothing. Maybe decrease the amount of T4 you’re taking?

WitchingHour2point0 profile image
WitchingHour2point0 in reply toDunkenb

I defo won't reduce T4. As my T4 gets lower I feel worse!

I think the plan will be to drop back to 20 T3 and go up to 130 T4, in due course. :)

Minimol profile image
Minimol

Hi Gloaming - was there a reason you increased your T3 dose from 20 to 25 to 30 in such quick succession? Were you feeling under medicated?

WitchingHour2point0 profile image
WitchingHour2point0 in reply toMinimol

I added 5mcg in 6 weeks. I don't think that's excessive but yes, I was symptomatic. I'd not have increased otherwise...

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