T3 mono, self-medicating, need advice

[AenArdSkellig]

Dear members, I´m new here and I´m so lucky to find this amazing community!

My name is Lena (32 y.o., 167 cm/81 kg) and I live in Germany. Unfortunately, I failed to get any proper medical assistance concerning my thyroid problems and that´s why I´m self-medicating (T3-mono). I´m asking for any help or ideas of what´s happening with me now.

First of all, a bit of introduction: I´m having thyroid issues since my 13-15 years, so I just don´t remember myself in the healthy condition. All the typical symptoms were present since then (puffiness, water retention, weight gain, brain fog, sleepiness, lack of energy and motivation, hair falling out, eyebrows thinning etc.) I was a young girl and in my family it was just considered as laziness that didn´t need any medical support. Nevertheless I went to the doctor, I remember that my TSH was around 4+, but the doctor told me everything was OK.

After that there were many years of struggling, I studied at the university. The brain fog was so awful that I could study only during the adrenalin rushes which gave me a bit of concentration (when the deadlines were close). I even managed to graduate with excellent notes but I was not able to work. Sometimes the situation was so bad that I was even bed-bound.

In 2019 I found the info on supplement deficiencies. Of course my Vitamin D, ferritin, cortisol were very low but I managed to improve their levels. Since then I continue taking various supplements but unfortunately that didn´t help much with the thyroid issues.

In 2021 I once again tried to find the endo (already having read a lot of info on supplements, adrenals, thyroid, understanding that “within the references it´s not the optimum” and so on). The endo checked my blood and said that no medication was needed. My bloodwork was:

Vitamin B12 mg/l |180-914 453

Vitamin D ng/ml |20-100 38,40

Ferritin ng/ml |5-229 44

FT3 pmol/l |3,38-7,51 4,61

FT4 pmol/l |7-21,1 12,30

Anti-TPO IU/ml |0-34,99 < 3,00

Anti-TG IU/ml |0-3,9 4,90+

TSH mIU/l |0,34-4,2 3,30

I understood that I could rely only on myself, ´cos the endos thought I was well despite all the awful symptoms that literally stole 17 years of my life. In 2022 I was experimenting with adrenal cortex and capsules with dessicated thyroid. The latter is available here in Germany but without exact numbers of T3 and T4. I thought I found my “sweet point” with 4 capsules and my amazing condition lasted for 20 days – I was so full of energy, slept well, was shining with happiness. I used these capsules for 4 months and they improved my hair a lot. Nevertheless I thought I could find a better alternative than capsules and decided to try T3.

I realize that T3 mono is considered to be the last resort, people usually start with T4 but I thought T4 would be of no use for me (I presume that I have problems with conversion). So on 14.03.2023 I started with T3 only from really low numbers: 1-2 mcg and raised the dosage quite fast, ´cos I had no side effects such as fast heart rate, high blood pressure, nervousness etc. While taking thyroid capsules I often experienced nervousness, shivers and this was not pleasant at all. With T3 only I had none of these (I measure basal temperature and blood pressure to control my condition). On the contrary, I started feeling sleepy more often. And this makes no sense for me – how is it possible to be sleepy and weak on 62,5 mcg of T3?

Yesterday I went to my GP to ask for the bloodwork. Today I received the results (I took T3 12 hours before the bloodwork):

Ferritin 103 ng/ml (15-150)

Iron 23,1 μmol/l (5,83-34,5)

Vitamin D3 (ECLIA) 92,7 ng/ml (20-70)

TSH 0,02 (0,40-4,00)

FT3 9,17 (3,07-6,67)

FT4 9,27 (11,97-21,88)

Ferritin and Vitamin D are high because of the supplements and my GP says Vitamin D is too high, already in the toxic area. Maybe I did something wrong, but based on my previous experience Vit D is the parameter that is really difficult to keep sufficiently high. Same with ferritin. It´s no surprise TSH is low, but FT3 above the range and still the hypo symptoms? Maybe because it´s been only 20 days on T3 only.

I´m planning to have blood tests done from time to time. Maybe you have any advice for me or any explanation of my symptoms? Could that be T3-resistance? I was planning to raise T3 to 70-80 mcg (15-20 mcg 4 times/day) keeping an eye on basal temperatures. I appreciate any help or advice.

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.

The recommended rate at increasing T3 is 5mcgs every 2 weeks. It may be that you have gone up the dose too fast and it is then very easy to miss your sweet spot. Being over range can feel the same as being hypo. Your body really hasn't had a chance to do any healing after 20days, the treatment for hypothyroidism is slow and drawn out to let the body adjust over time. 60mcgs T3 is a good dose.

Are you taking any supplements, if so what are you taking?

Your vit D looks too high.

No result for folate.

[AenArdSkellig in reply to GlowCoach]

Thank you for the very fast reply🙏

Yes, I'm aware of the fact that the increase should be slow. But I started experiencing really awful hypo symptoms on 5 mcg and decided to raise the dosage to overcome them. But it didn't work...

Being over range can feel the same as being hypo

Oh, I didn't know that! Maybe that explains my symptoms.

Your body really hasn't had a chance to do any healing after 20days

Yes, sure! Maybe my expectations were wrong, I expected the immediate effect of introducing T3. At least, some small positive changes.

Are you taking any supplements, if so what are you taking?

Stopped taking D3, K2 and chelated iron. I take: B50 complex, C, zink, vit. A, turmeric, magnesium, B12 lozenges, selenium, iodine.

No result for folate.

Endos and GPs are not testing it, maybe I'll ask them to test it next time...

Thank you so much for your help!😊

[Anthea55 in reply to AenArdSkellig]

Welcome to the forum.

I see that you are taking an iodine supplement. The general advice is not to take iodine unless you have been tested and found to have a deficiency. It can do more harm than good.

This recent link has collected many posts about iodine, so you can find more information there.

healthunlocked.com/thyroidu...

[AenArdSkellig in reply to Anthea55]

Hello and thank you very much!☺️

I´ve been takin iodine (sometimes in large amounts) since 2019. My thyroid was checked with ultrasound, it doesn´t have any nodules so I thought it was OK to take iodine...

And thank you for the link!

[Lalatoot]

I have been bothe hyperthyroid and undermedicated hypothyroid. I experienced the same symptoms in both situations. The lists of hyper and hypo symptoms you read on the internet are misleading as it really is not clearcut.

Introducing T3 is not always of instant benefit. I started adding T3 to levo 2 years ago and the improvements have been happening slowly over that time.

Some of us need a decent level of ft4 as well as ft3. You might be one of those people. Even though your ft3 is high your body may be telling you that it needs higher ft4. Nobody can predict this - you need to find out by trial and error. You might want to think about adding some T4 to your T3.

[AenArdSkellig in reply to Lalatoot]

Hello and thank you for the reply!

I experienced the same symptoms in both situations

Jaydee1507 also mentioned that, and thanks for sharing your experience.

I started adding T3 to levo 2 years ago and the improvements have been happening slowly over that time.

Also good to know for me! I definitely had some false image of T3 as a "quick fix".

You might want to think about adding some T4 to your T3.

I didn´t know that as weel, so I´ll keep that in mind! I think I experience some transition period at the moment, it´s been only 20 days and of course it´s too early to make any assumptions. And I still have some T4 in my blood (according to the recent bloodwork) - I thought I wouldn´t have any (as my thyroid is suppressed with exogenous T3).

Nobody can predict this - you need to find out by trial and error.

I have the same point of view!

[thyr01d]

I think you may be taking too much T3. I am looked after by a caring endocrinologist. My TSH was over 95 (range 0.5 - 5), which is coma level and I felt terrible though still conscious after years on T4. I was given T3 at the hospital and have stayed on it, but, this bit is so relevant to you, the maximum I take in one day is 40 mcg. That's with the TSH of 95, so I think you may be taking too much which perhaps is causing your body to reduce its own natural thyroid hormones. Also, I was started on, from memory 5 mcg per day (not sure about that) and took about 2 years to increase to 30 - 40 mcg per day, so a couple of things to think about. Best of luck recovering good health.

[AenArdSkellig in reply to thyr01d]

Thank you so much for sharing your experience!

so I think you may be taking too much which perhaps is causing your body to reduce its own natural thyroid hormones.

My assumption was that thyroid shuts down the production of its own hormones with the intake of exogenous T3, doesn't it?

Also, I was started on, from memory 5 mcg per day (not sure about that) and took about 2 years to increase to 30 - 40 mcg per day,

Yes, I realize that I increased the dosage too fast, it was the mistake...

Best of luck recovering good health.

Thank you so much for your kind words!

[thyr01d in reply to AenArdSkellig]

Hello again, in answer to your question, My assumption was that thyroid shuts down the production of its own hormones with the intake of exogenous T3, doesn't it?, I am sure you are right. Aren't we though, aiming to take as little medication as we can to feel well rather than to replace the body's natural production? Perhaps you are aiming for something different, at any rate, you are clearly working at this and will I am sure succeed in time.