What's going on?

[Schilddruse]

Hi, I've been on combined T4/T3 medication since December 2023 as T4 alone didn't work for me. I don't have Hashimoto's and an ultrasound of my thyroid was unremarkable. Vitamins and minerals are all optimal. My starting results prior to T3 were:TSH 0.03 (0.3-4.2)

FT4 22.2 (12-22)

FT3 3.9 (3.1-6.8)

I gradually up to 20mcg liothyrinone a day and took 75mcg and 100mcg levothyroxine on alternate days.

I quickly felt totally better, and by the start of February 2024 my results looked great:

TSH <0.01

FT4 18.5

FT3 6.0

(same ranges)

However, by the end of April, I developed fibromyalgia symptoms such as fatigue, joint and muscle aches - a general "flu-ey-like" feeling. Upon testing, I found that my FT3 had fallen to 5.1 (FT4 and TSH unchanged), so I slowly upped my liothyrinone to 30mcg which increased my FT3 to 6.7 and left me feeling totally well again.

Unfortunately, around mid-September the exact same fibromyalgia-like symptoms came back. Upon testing, my FT3 had dropped, but only to 6.2. Nevertheless, I increased my liothyrinone to 40mcg a day (and reduced levothyroxine to 50mcg) and within a couple of days felt totally better. I then went back to my original dose and the symptoms returned, so I've now reverted to 40mcg liothyrinone/50mcg levothyroxine. I felt perfectly well for a few days, but now the fibro symptoms are returning.

Can anyone shed any light on what may be happening here and advise me what to do please?

[Regenallotment Ambassador]

I think your FT4 is probably low which can give the aches and pains.

FT3 should probably come down a bit, FT4 up. But slowly.

Do you have a recent FT4 result?

[Schilddruse in reply to Regenallotment]

Thanks for replying. My FT4 was 18.0 on 16 September.

[Schilddruse in reply to Regenallotment]

I've felt right as rain on a FT4 of about 18 previously though and that explanation doesn't fit my fact pattern.

Thanks anyway.

[Regenallotment Ambassador in reply to Schilddruse]

Yeah it’s not that low. Hopefully others have more helpful suggestions 😊

[DippyDame]

Who said they are fibro symptoms?

I'suggest you have a form of thyroid hormone resistance which makes it difficult to get adequate T3 into the nuclei of the cells.

The increasing doses appear to have been helping push the hormone into the cells, but eventually proved inadequate, so symptoms returned.....until you increased again

Your current dose is 50mcg levo/T4 plus 40mcg lio/T3.

Having travelled a similar journey I suggest you need to increase your T3 again

You may find my bio interesting

Also, you may find this link helpful...

healthrising.org/blog/2019/...

The work of the late Dr John Lowe helped me.

Good luck.

[Schilddruse in reply to DippyDame]

Thanks.

I haven't been diagnosed with fibromyalgia, but my symptoms correspond to those of fibromyalgia sufferers.

I'm trying to determine if my recent symptoms are attributable to something that needs fixing re my hypothyroidism or whether I have some other condition in addition such as "proper" fibromyalgia.

[greygoose in reply to Schilddruse]

What do you mean by 'proper' hypothyroidism?

[Schilddruse in reply to greygoose]

Sorry, I meant to say "proper" fibromyalgia!

I've edited my post accordingly.

[DippyDame in reply to Schilddruse]

I thought so!

I was diagnosed with fibromyalgia and chronic fatigue syndrome years ago which didn't help one bit

I had a similar dilemma over 20 years ago....see my bio.

Fibromyalgia is a syndrome, a collection of symptoms while a disease refers to an established condition like hypothyroidism.....which you have had diagnosed

I'm trying to determine if my recent symptoms are attributable to something that needs fixing re my hypothyroidism or whether I have some other condition in addition such as "proper" hypothyroidism.

Not sure where your thoughts might have come from but they are unlikely to be helpful...sorry!

There is only "proper hypothyroidism"

Hypothyroidism, also called underactive thyroid, is when the thyroid gland doesn't make enough thyroid hormones to meet your body's needs

Suggest you read a little about Dr John Lowe fibromyalgia researcch in the link above, or books from this list

thyroiduk.org/further-readi...

[Schilddruse in reply to DippyDame]

Sorry, I meant "proper" fibromyalgia!!

I've edited my post accordingly.

[DippyDame in reply to Schilddruse]

OK!

After a diagnosis of hypothyroidism you need replacement thyroid hormone for life

It sounds as if you need a dose review, you are likely still undermedicated as the improvement/ then return of symptoms, suggest.

If testing protocol was correct your pre-T3 labs appear to show very poor conversion...it looks as if you need at least 40mcg. ....likely more. The dose must be consistant for it to work.

You may also need to further reduce your T4....it was originally on the high side due to poor conversion.

Have you optimised vit D, vit B12, folate and ferritin to support thyroid function?

[Schilddruse in reply to DippyDame]

Thanks.

Vitamins and minerals are all optimal.

I will increase liothyrinone to 50mcg and reduce levothyroxine to 25mcg and see how I get on.

[DippyDame in reply to Schilddruse]

Only change one thing at a time so you can see what is doing what!

Increase slowly so that you don't miss the 'sweet point"

Try adding 6.25mcg to start with and see how that feels after a couple of weeks.....if ok you might add a further 6.25mcg

it's trial and error because we are all different

The T3 will reduce the T4 naturally.

[Schilddruse in reply to DippyDame]

Thanks for your advice.

I actually managed to get some advice from my thyroid specialist, and it was her who suggested I change to this dosage.

[Schilddruse in reply to DippyDame]

Could I possibly pick your brains again please? I've now been on 50mcg T3 and 25mcg T4 for 3 weeks. I felt an improvement on this new dose after just a day or two, and even last week I was feeling great. But then, just as before, I crashed and all the dreadful "fibromyalgia" symptoms returned. What should I do now? The advice from my thyroid doctor is to wait until 6 weeks are up and test, and then, if I'm still feeling unwell, to increase to 60mcg T3 while cutting out theT4 completely.

I'd really appreciate your thoughts.

[DippyDame in reply to Schilddruse]

This is my personal view...

Your symptoms are from hypothyroidism not from fibromyalgia....a common confusion

Some interesting info here...

healthrising.org/blog/2019/...

You can't judge anything after 3 weeks....your doctor is roughly correct, follow his advice....

But... I'd hold the T4 for now and instead of moving straight from 50mcg to 60mcg T3 I'd increase in 2 stages. First to 55mcg then after a couple of weeks to 60mcg

The T3 will naturally reduce the T4 anyway and may avoid you missing your sweet spot

See how that is and then drop the T4 after a couple of weeks on 60mcg T3

We are advised to change only one thing at a time

It's a gentler transition

We crash, because the body is sensing it needs more hormone. When it received that initial but inadequate increase, symptoms briefly cleared ...but that didn't last as the body sensed it wasn't enough, and symptoms returned ....like Oliver Twist saying, "Can I have some more please"!!

We have to be patient....that's often the difficult bit!!

[Schilddruse in reply to DippyDame]

Thanks for your reply - it's kind of you to give it your attention.

Just to clarify, do you mean that I should go up to 55mcg T3 in 3 weeks' time if I'm not feeling better or should I do so right away.

I completely get it re "fibromyalgia" and share your layman's sense of what's going on with my "crashes", but obviously neither of us can provide a proper explanation of what's going on at a metabolic level (and I don't know if anyone else can either).

[DippyDame in reply to Schilddruse]

Sorry that wasn't clear....having a bad day with sinusitis. Maybe I should have held back in replying!

Wait another 3 weeks ( that will be a total of 6) then if symptoms persist add that first 5mcg.

I'd then wait 6 weeks and test again and also review your symptoms ....add the other 5mcg then if you need it.

Increasing low and slow avoids missing the sweet spot

Just my thoughts.

[Schilddruse in reply to DippyDame]

Will follow your advice. Thanks again, and I hope you're feeling better soon. Sinusitis is just awful; inhaling steam containing a few drops of Olbas oil might provide a little bit of relief.

[Digger031145 in reply to DippyDame]

Dr John Lowe did fabulous work with thyroid patients

[DippyDame in reply to Digger031145]

Yes, he absolutely did!

[Tina_Maria]

I am not keen on the diagnosis of fibromyalgia - in my view, it is a lazy diagnosis, as physicians like to put a label on something they cannot explain or have no clue what the real reason could be.

How are your vitamin and mineral levels? We always suggest to test your iron, Vitamin D, Vitamin B12 and folate levels. If any of these are low or not optimised, the thyroid hormones will not work properly and therefore you can experience symptoms.

Many people are deficient or low in Vitamin D, especially now that we are entering the winter period. In addition, the daily recommended allowance for Vitamin D3 are too low to replenish your store if it is low or if you are deficient. Once you know where your levels are, you can start supplementing to bring them higher in range (doses up to 4000IU daily are considered safe). Most aim for levels between 80 and 100 nmol/l. You should also take Vitamin K2 with the Vitamin D3, so the calcium from your diet gets directed to your bones, and take a good magnesium supplement as well, as this helps with the absorption of Vit D3. Many people are deficient in Magnesium, which is an important mineral for energy and has many functions in our body.

We always advice against taking multivitamins, as they contain cheap ingredients, have too little of the vitamins you need and too many other ingredients that are not needed. Many also contain iodine, which is not recommended for hypothyroid patients and iron, which prevents the absorption of the other nutrients.

In the UK, you can do private testing or can ask the GP for a blood test to assess these key nutrients. Where are you based? Just wondering if its Germany due to your handle

[Schilddruse in reply to Tina_Maria]

Hi, I'm in the UK. I've had my vitamins and minerals tested several times and they're all optimal. I supplement with Better You Vitamin D3/K2 and Thorne Basic B Complex.

[Tina_Maria in reply to Schilddruse]

Hi again, good to see that your Vitamins and minerals are optimal.

I am not an expert on T3, but there are some members that are taking a very low dose of levothyroxine and a higher dose of T3, others are taking high doses of T3 only. It could be that you may be heading in that direction and that you may end up on T3 only?

I have found a blog by Paul Robinson, which some members have commented on before with regards to T3, he is obviously keen to flog his books, but some of the blogs may give you some pointers perhaps?

paulrobinsonthyroid.com/blog/

[Schilddruse in reply to Tina_Maria]

That's really kind and helpful of you - thanks.

[Tina_Maria in reply to Schilddruse]

No worries, I hope you will feel better soon! 🤗