feel like I’m back at square one again - Thyroid UK

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feel like I’m back at square one again

JoJoloveschocolate profile image

My latest bloods look great!

t4 18.4 (12–22). T3 6 (3.1-6.8) (tests done as per forum protocol)

I’m on 100mcg daily of Levo (accord brand)

And 10mcg t3 (just trying 7.5mcg am with Levo and 2.5mcg lunchtime of thybon…working up to trying 10mcg dose in the morning with Levo)

But….

Seem to be swinging between a few good days and then bad days . Last three days have been bloody awful..,had to go back to bed in the afternoons, feeling cold and exhausted. Low back pain, shoulder blade and elbow pain is back. Starting to wonder if there is actually “something else” going on. Yet 5weeks after increasing Levo to 100 I felt fantastic …pain free and walking every day for a while. Any ideas? Seeing the gp in a couple of weeks. Thanks.

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JoJoloveschocolate profile image
JoJoloveschocolate
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17 Replies
DippyDame profile image
DippyDame

Been there...you probably need more T3 and less levo.

Your body likely appreciated the increase and you felt great then it sensed it needed more and symptoms returned.

You might want to have a look at my bio

JoJoloveschocolate profile image
JoJoloveschocolate in reply toDippyDame

thank you DippyDame . Read your bio….yes…I was diagnosed with fibromyalgia and cfs and it’s those type of pains that keep going away and coming back again. When I added t3 after a few weeks I felt awful and tests showed my t4 had dropped from 19 to 15, so increased Levi to 100mcg daily from 87.5mcg daily and after a few weeks tests showed my t4 back up to around 18 and my t3 had gone from 5.5 to 6.1 just with the Levo increase of 12.mcg daily.

SlowDragon profile image
SlowDragonAdministrator

What’s your most recent iron and ferritin levels

Low ferritin will cause fatigue

When did you last test vitamin D, folate and B12

Also

Worth trying dairy free diet and lactose free Levo

Vencamil seems to suit many people even if not lactose intolerant

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

Thanks SD. About 5 months ago: B12 and folate right at top of the range. Ferritin low but gone up from 22 to around 32. Vit D around 80 … am on the cut d and k spray. The thing is… the fatigue and pain all improved massively to start with - after the Levo increase and again after I changed to thybon t3, but then returned again. I tried df diet and felt no change. I’ll ask gp about testing vits ferritin etc again

SlowDragon profile image
SlowDragonAdministrator in reply toJoJoloveschocolate

Aim to maintain Ferritin at minimum of 70 and around 100 often better

Ferritin at 32 is effectively deficient

I don’t “feel “ any different on dairy free diet …..but the blood test results are better and vitamin levels remain higher and lower antibodies ……and mucin significantly reduced

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

Thanks for the advice SD. I’ll think it over.

SlowDragon profile image
SlowDragonAdministrator in reply toJoJoloveschocolate

There’s lots of great dairy free chocolate nowadays

And I just found stunning vegan Blue Cheese

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

I’m all for the chocolate!! Not so much the blue cheese…🤢

SlowDragon profile image
SlowDragonAdministrator in reply toJoJoloveschocolate

What are you taking to improve low ferritin

retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Are you pre or post menopause (helpful to add age on your profile)

Vegetarian or vegan?

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

I’m not vegetarian or vegan. I’m 55 (age is already on my profile). I’m post meno (shown on blood test last year) on hrt patches. The go said to take spatone sachets which are very low dose and to eat more iron rich foods which i have been doing. I’ll ask for a re - test of iron and ferritin when I see the gp in a coupke of weeks to see how things are doing. Thanks Sd

SlowDragon profile image
SlowDragonAdministrator in reply toJoJoloveschocolate

As you’re probably aware as a regular reader …..Spatone is pretty ineffectual

Many many members have great results with Three Arrows

suggest you read the many Great replies from FallingInReverse

re ferritin and Three arrows

Eg

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

JoJoloveschocolate profile image
JoJoloveschocolate in reply toSlowDragon

Thanks for the info. I’ll get the iron and ferritin test in the next couple of weeks and then fo from there. Yes - I’ve seen many good posts about Three Arrows. I probably will need something more than spatone. I’m thinking I might even need to alter my t3 a little bit too.

I can’t access the first link. Says page no longer exists…will try again…

JoJoloveschocolate profile image
JoJoloveschocolate

Thanks SlowDragon DippyDame I’ve got a plan now of what to ask gp and for getting my bloods done again.

DippyDame profile image
DippyDame in reply toJoJoloveschocolate

Best of luck!

Please keep us posted

JoJoloveschocolate profile image
JoJoloveschocolate in reply toDippyDame

Thanks DippyDame . Will do. While I’m waiting for my appt I’m going to try once a day dosing of the t3. At the moment, I’ve changed from 5mcg t3 with levo in the am and 5mcg t3 12md tom7.5mcg t3 with levo a.m and 2.5mcg at 12md. I’ll do that for a few days then if all ok I’ll try taking the 10mcg all in one go with the levo in the morning a couple of hours before breakfast. I think you and Regenallotment suggested trying that before.

DippyDame profile image
DippyDame in reply toJoJoloveschocolate

Yes, but just keep moving slowly to a single dose.....it takes time.

Monitor for any signs of overmedication...fast resting heart rate, hand tremors, anxiety, heat intolerance, weight loss, loose bowels etc

You may need slightly less T3 if taking a single dose rather than splitting

Going too quickly isn't helpful....being impatient, I initially did that and suffered!! We learn by our mistakes!!

I take my full T3 dose (100mcg)at bedtime with no problems.....for me, it keeps it well away from food and drink

Hope you feel very well soon

JoJoloveschocolate profile image
JoJoloveschocolate in reply toDippyDame

Thanks for the advice. I’ll move slowly.

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