Why are my symptoms better if my blood results ... - Thyroid UK

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Why are my symptoms better if my blood results are worse ?

Discodiva1 profile image
6 Replies

Hello I was started on Levothyroxine April 2020 and felt much worse in terms of muscle pain, brain fog, fatigue etc. I was eventually referred to an endocrinologist who I saw in Feb 2021 and he agreed to give me a trial of 10mcg of T3 and wanted to reduce Levo from 100mcg to 50 mcg( I split the difference and only reduced to 75mcg as I felt 50 was far too low). At the time my T4 was 30 % through the range for both T4 and T3 approx.

My ferritin has been persistently low at 24 ug/L but I have been working on this.

I had a blood test yesterday after 8 weeks on T3 10 mcg and my results for both hormones are worse. My T4 is now 10.4 ( 11-24 range) -4.5 through rangeand my T3 is 4.2 (3.9-6.8) 10 %through range.

My symptoms are better but are definitely still there. When I take T3 I do have more energy and I miss it when I dont take it. Can you advise me on what to ask for next ?

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Discodiva1
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6 Replies
fuchsia-pink profile image
fuchsia-pink

I'm not sure why they gave you lio so early in your thyroid journey when you were nowhere near an established levo dose - and your levo should never have been reduced when it was so low in range at that time.

So if it were me, I'd keep lio at 10 mcg a day but ask for an increase in levo of 25 mcg a day and re-test in 6 - 8 weeks, and up levo by another 25 mcg if free T4 is still too low. Some of that free T4 will convert into free T3 so both levels should increase x

pennyannie profile image
pennyannie

Hello Discodiva :

No thyroid hormone replacement works well until your core strength is strong and solid ;

I read ferritin needs to be over 70 to optimize conversion of T4 into T3 :

It took me over a year to build my ferritin up and I now aim to maintain my ferritin at around 100 :

I couldn't find a vitamin D when I quickly looked back, but did see a B12 at a relatively low percentage through a very wide range ?

When taking T3 you are not reliant on conversion so, yes, you will feel a bit more energised but you must build up your core strenth to enable you to convert the T4 into T3.

When taking T3, it does tend to lower, suppress the TSH and lowerT4 :

Discodiva1 profile image
Discodiva1

Thankyou. I am contacting them today and so will ask for an increase in Levo back to 100 mg which is where I was originally but this time I will have the added T3. I requested an increase in Levo first from my GP and the Endo but they refused as my TSH at the time was 0.32 and below the ref range which is why I ended up on T3

DippyDame profile image
DippyDame

Was there a reason why this endo didn't initially increase your levo...your results before he altered your dose are calling for more.

It looks as if your body was ready for levo but the symptoms that followed indicated a need for even more!

It's a bit like when I feel the need for some chocolate and have a couple of squares, but that doesn't satisfy that need....but an extra square will!

Why did he prescribe T3?

In addition to TSH, FT4 and FT3 did he also test vit B12, vit D folate, ferritin and antibodies? They all need to be optimal for good thyroid function and the adequate conversion of T4 to T3... and best tested before adding T3?

Your latest results suggest your conversion may indeed be impaired but with your poor results it's not clear.

High FT4 with low FT3 is a good indicator of poor conversion

Full thyroid testing can be done privately if your endo isn't helping

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

The extra T3 will help ( because your level is far too low) but the question is, would you have also felt better with just extra T4, which should have raised your FT4 and subsequently your FT3.

I guess this endo is a diabetic specialist with little knowledge of thyroid hormones. He has heard about patients crying out for T3 and jumped straight to that protocol missing out the first steps of investigation. Getting a prescription for T3 can be akin to getting blood out of a stone!!

Reducing your levo from 100mcg to 50mcg when it was sitting at only 30% through the ref range wasn't necessary and initially adding 10mcg T3 was too much. We are advised to only change one thing at a time, it makes analysing the effect of each hormone easier.

However in your situation I would initially be asking to have the levo increased to 125 mcg and the T3 reduced to 5mcg..... Test after 6 weeks see how the frees change and adjust as required.

Ideally, based on your labs, I would not have wanted to add T3 at all until increasing my levo dose had first been trialled....you had plenty room to increase.

I'm not a medic just another member who has had a very long bumpy thyroid journey while learning along the way. I'm now T3- only. I would not have recovered without the support of experienced and knowledgeable members here....with medics I reached the stage where I could barely function. Here we are all in this thyroid mess together!

This might help

thyroiduk.org/if-you-are-hy...

Others will come along and offer suggestions these are just mine.

Good luck

DD

Discodiva1 profile image
Discodiva1

Thanks DD. I ended up with T3 as my GP and Endocrinologist refused to increase the Levo as my TSH was suppressed at 0.32 (range 0.35-4.5 )

I requested an increase in Levo several times. I have been very compliant with the medication. They unfortunately did not check my levels of other things including Ferritin which has been a big issue for me.

Thanks for the information.

DippyDame profile image
DippyDame in reply toDiscodiva1

They are currently (wrongly) fixated on TSH...They wrongly fear thyrotoxicosis

thyroidpatients.ca/2019/07/...

You might also find this interesting, the authors are highly respected including our own Diogenes

bmcendocrdisord.biomedcentr...

I'm so sorry you have been given the run around by incompetent medics....sadly it's the reason why we'll over100,000 people have arrived here looking for answers.

You clearly have a better grasp of your problem that those charged with "first do no harm"!

Build up your case and keep pushing....not easy I know. My problem is complicated so I now self medicate. Initially, you just need more levo...it's not rocket science, but they cannot join up the dots.

Be strong

DD

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