Wit's end! Switch Levo brands, try NDT again, be patient with different dosage?

[Koola]

Dear wise and helpful friends,

On 13 Dec. my labs were the best ever and on 31 Jan. they changed again, with TSH too high etc. I’m putting them next to each other:

TSH: 4.80 -- range is 0.20 – 5.00 -- then TSH : 5.99 -

FT3: 4.10 – range is 1.8 – 4,5 -- then FT3: 5,12

FT4: 10.01 – range is 7.0 – 20.0 -- then FT4: 9.12

I was alternating every 2 days 63 mcg with 50 mcg levo, Tirosint, plus taking 6mcg T3.

I was low on iron which I’ve been supplementing. Vitamin B & D & Folate, all okay.

Now my endo. says up the levo to 63mcg only and reduce T3 to 6mcg every other day. If FT3 is too high shouldn’t I take more?

I wasn’t feeling good in December and now I’m feeling worse, more brain fog, minus-zero energy etc. and wondering if I should switch from my current additive-free Levo to another brand. Or should I try NDT again? I ordered Thai from Thailand in Sept., took it once, felt so bad that I stopped. However I wasn’t taking any T3 back then. Then again, there are different brands of NDT and maybe “Thai” wasn’t the right one?!

Desperate for advice because I have an appointment with my endo soon and I don’t know what to ask him anymore. He’s been open minded and helpful until he recently advised me to go to a rheumatologist for my increasing joint pains and possible fibromyalgia. Now, I’ve already been given the run-around by other endos: gastroenterologist for bloated belly; ear-nose-throat doc for tinnitus & dizziness; a generalist prescribed anti depressants (stopped after 4 days); eye doc. for blurred vision and so on. I know it’s all linked or caused by my post RAI hypothyroidism.

I am fed up with being an invalid! Brain fog is the worst. If I can’t run around the block (Ha!) then at least I’d like to be able to finish some super important paper work.

To end on a positive note, and for whom it may concern, for the joint pains I’ve started supplementing with tablets containing Glucosamine, Hyaluronic acid, Chondroitin and MSM (sugar & gluten free) and it’s helping.

[greygoose]

Are you sure your endo is qualified?

TSH: 4.80 -- range is 0.20 – 5.00 -- then TSH : 5.99 -

FT3: 4.10 – range is 1.8 – 4,5 -- then FT3: 5,12

FT4: 10.01 – range is 7.0 – 20.0 -- then FT4: 9.12

You are very under-medicated to have a TSH of 4.8. It should come down to 1 or under - especially if you're taking T3. Your FT3 is high in the second result, it's true, but how long a gap did you leave between the last dose of T3 and the blood draw? If it was less than 8 hours, then that's why your FT3 is high.

Now my endo. says up the levo to 63mcg only and reduce T3 to 6mcg every other day. If FT3 is too high shouldn’t I take more?

He really does not know what he's doing. You cannot take T3 every other day, it doesn't work that way. Your body needs a constant, steady supply of the same dose every day if T3 is going to help. And the fiddling little increase in levo is hardly going to do anything at all. Your FT4 is low because you are taking T3. That may or may not be ok for you. But, if you're going to have an increase in dose, it should be at least 25 mcg.

[Koola in reply to greygoose]

Oh boy... and I thought I had a good endo! A zillion thanks Grey Goose, starting to feel hopeful again! So now, I’ll take 88 mcg instead of 63.

I don’t know if T3 is helping (I took it more than 8 hours before test). I guess I’ll keep taking 6mcg a day. Should I test Reverse T3 as well?

[greygoose in reply to Koola]

No point in testing rT3, it doesn't give you any useful information. I mean, it will tell you if it's high, but won't tell you why or what to do about it. And no doctor would know! lol

I just can't imagine that taking the same 6 mcg T3 every day would suddenly cause your FT3 to shoot up over-range, like that. So, do you have Hashi's?

[Koola in reply to greygoose]

No, I'm hypo after RAI done 10 years ago, after having been hyper for about 20 years. (I say "about" because it would come and go...)

the first year after RAI was difficult and then smooth sailing for 5 years. then tiredness, some weight gain and 2 years ago all sorts of symptoms, increasing.

I still think RAI was a mistake though all endos say it wasn't...

[greygoose in reply to Koola]

Whether or not it was a mistake rather depends on said endos! If they don't know how to treat hypo, then perhaps it was. But, they could never admit it.

Have you had your nutrients tested: vit d, vit B12, folate, ferritin? Are you taking any kind of supplements?

[Koola in reply to greygoose]

Yes I had them all tested. Ferritin and Folate were low so I'm supplementing. Also taking Vitamin B complex because it was low a while ago though I haven't retested recently.

[greygoose in reply to Koola]

OK, so did you stop your B complex a week before the blood draw?

[Koola in reply to greygoose]

Yes

[greygoose in reply to Koola]

OK, good.

[Koola in reply to greygoose]

Sorry to bother you again, Greygoose. I got it re having to take T3 everyday but I would like to know for sure: does it work like T4 in that the higher it is the more one should take?

By the by, I took 88 mcg this morning and 6mcg.T3 at the same time, had some tachychardia and still very tired but the great thing is that I’m not sad, depressed or anxious at all. I react very quickly to changes of potency so it’s not “all in my head”, (lol).

If tachychardia continues for a few days, maybe I should titrate and alternate with 75mcg for a week or so.

?

[greygoose in reply to Koola]

does it work like T4 in that the higher it is the more one should take?

That's not how T4 works. That's how TSH works.

The higher the TSH - Thyroid Stimulating Hormone - the lower the thyroid hormone (T4 and T3) are likely to be. The TSH, which comes from the pituitary, stimulates the thyroid to make your hormone.

Your thyroid cannot respond, which is why you're taking levo and T3. When you take levo and T3, your FT4 and FT3 should rise in the range, and your TSH should drop. You need to take enough levo and T3 to get your FT4 and FT3 up into a place where you feel well, but not too high, not over-range.

So, if the FT4 is low, you need to increase the levo. If the FT3 is low, you need to take more T3. If they get too high, you need to take less.

Hope that's not too confusing.

[Koola in reply to greygoose]

Wonderful, I’m finally understanding things, notwithstanding brainfog Thanks a mil’! ( I bet you’ve put a few endos out of business over time…)

Asking again and then I’ll leave you alone. What about titrating, taking 88mcg & 75 mcg?

[greygoose in reply to Koola]

Normally, one increases levo by 25 mcg every six weeks. But, it depends on levels. Alternating 88 and 75 is a pretty silly dose, anyway, when one's FT4 is as low as yours. So, in your place, I would go up to 75 mcg daily for a couple of weeks, then go up to 100 daily, hold for six weeks and retest. Then see how you feel.

[Koola in reply to greygoose]

Thank you!

[greygoose in reply to Koola]

You're welcome.

[Lalatoot]

It sounds to me if your body isn't liking being on such a low dose of T4 but that is just my opinion.

You cannot alternate days with T3 - it needs to be a steady dose each day.

I had very bad shoulder pain - bad pain and stiffness in one leg which really hampered my mobility - this all went once I was on a steady dose of t3 so your joint pain may go if you can balance the thyroid hormones.

Why did you start on T3? Have you ever just been on levo alone? The problem with NDT is that it is a fixed ratio between T4 and T3 and maybe it doesn't suit your body.

I am not coeliac but bloating and abdominal pain went once I was gluten free.

[Koola in reply to Lalatoot]

Thank you Lalatoot. Greygoose, see above, gave the same advice re increase in Levo and the T3.

I’m sure you’re right about joint pain and hormones, since it first started exactly at the same time as I started gaining weight and feeling overtired.

I was on on Levo only for 9 years and started T3 after reading posts here.

Don’t know about going 100% gluten free. Hard to get here in Greece. I only have a few rusks in the morning, otherwise veggies, fruits, fish, nuts – healthy diet!

[Marz in reply to Koola]

I found it so easy being gluten free in Greece as so much is cooked from scratch from fresh produce. Gluten free products have other ingredients which are not always good for us !

[Koola in reply to Marz]

I found gluten free rusks !

[Marz in reply to Koola]

Made from ?? Check the ingredients !!

[Koola in reply to Marz]

Papadopoulos. I don't have the energy right now to check each ingredient. 22 of them + unspecified like"natural flavoring".

[Koola in reply to Koola]

the Papadopoulos gluten-free rusks have a “certified by the European Celiac – “ commission or committee or such notice.

For what it's worth?

[Marz in reply to Koola]

Yes I looked them up and dropped them a line ! They replied immediately - very impressive ! It looks a good product !

[SlowDragon Administrator]

Absolutely essential to test vitamin D, folate, ferritin and B12 too

As you are under medicated and hypothyroid these are likely too low

Many people need good levels of Ft4 and Ft3

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last 1/3rd of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

[Koola in reply to SlowDragon]

Hi again SlowDragon.

I followed yr. advice: "all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water" .

I had blood tken at 6:30 am. Before I used to have tea and a few rusks and my blood was taken much later, between 11:00 and 13:00.

Could this explain why TSH & T3 were noticeably higher?

[SlowDragon Administrator in reply to Koola]

More likely low vitamins and/or food intolerance affecting absorption and uptake

Your Ft4 is currently very low and TSH too high

Changing to a strictly gluten free diet may help reduce symptoms, help gut function improve

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

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