2 years post-thyroidectomy - Struggling with Tirosint and finding the right dose

[Sophie4506]

Hi,

To make a long storyshort, after a sever hyperthyroidism and toxic goiter, I got my thyroid removed 2 years ago.

I started with Levothyroxine - 88mg , went to hypo so my doctor increased it to 4x100mg 3x88mg.

I then went to hyper in less than 2 weeks during 2 months. As I also experience very strange variations of mood/energy level during the day, I got switched to Tirosint. Ultimately we get back to the initial dose : 88mg.

First 4 months : My TSH went from 0,9 (when I was hyper) to 3,756. Then I slept quite a lot, thought I was feeling good as I didn't experience any insomnia, lack of focus, speedness anymore, but I started to feel very low in energy. Surprisingly, no diet change, no life change, during summer I went to slight hyper and a TSH of 1,3.

After this, during Winter, the TSH just decreased and decreased to reach reach levels between 3,1 and 2,9 (t3 :2,6 at maximum, now 2,5 for a range of 2,5-3,9 and T4 went from 8,9 to 8 today for a range of 6,1-12,4). My endocrinologist always told me I was in range. Same goes for GP.

However, since January, I experienced very low energy, extreme fatigue and the least action requires a lot of energy., trouble to focus, brain fog, low mood, lost of interest ...It got to a point last month when even moving from my sofa to go to the kitchen was very ... Hard to do ! Plus, with Tirosing, I have the feeling that I really feel good 5-6hours after taking the dosage.

I asked to my GP to increase Tirosint, just with an increase of 100mg once per week (1x100 mg +6x88mg) as I am very scared to be hyper again as I experienced it just with a increase of 6mg of Tirosint last year.

Since 10 days I started this increase, the first few days following the 100mg, I have very good energy level, though I feel speed and a bit "high". + I slept between 5 to 6hours (usually 7.30 hours-8hours). Also felt slightly nervous sometimes and hungry for no reason.

Then, the last days before taking again the 100mg dose, I feel ok, but tired, and as I used to feel before : I really feel awake and connected 5hours after taking Tirosint.

I have the feeling that I feel fluctuations when I take 100mg ... (which on a week is juste a 1,3mg increase ... Very low to feel anything)

I'm starting a new job next month and I really would love to be in shape ... I don't know if those symptoms mean I should increase the dosage 2x100mg instead of 1 ? Or try another medication such as Thyrofix ?

In the meantime as the T4 has apparently a half-life of 7 days, I'm not even at 50% now ...

Has anyone experienced this ? And with Tirosint specifically ?

Thanks for helping me, I didn't feel well at all 1 year prior to the surgery, but I have the feeling it is even worst now !

[Sophie4506]

I forgot to add then I got supplemented in Vit D, and my level is in range if that is any help

[helvella in reply to Sophie4506]

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[Jazzw]

Hi Sophie. I think you maybe have a doctor or possibly doctor(s) who are wedded to the idea that TSH is the only blood test that matters.

In all of the results you’ve posted, there isn’t a single one that shows you’ve been over-medicated. There are lots however that seem to suggest you’ve been undermedicated on more than one occasion.

The difficulty with relying on symptoms is that symptoms of over medication can be identical to under medication. So “feeling hyper” might actually mean you’re undermedicated. 100mcg levothyroxine daily is not a particularly high dosage and isn’t very likely to be causing you “hyper” symptoms in itself.

Does you doctor do FT3 tests ever? What you need is TSH, FT4 and FT3 ideally.

And what about your ferritin, folate and B12 levels? Have they ever been tested?

What’s your Vit D result? “In range” often isn’t good enough for many of us.

[Sophie4506 in reply to Jazzw]

Hi Jazzw,

Thanks for answering. About when I felt hyper one year ago with the Levothyroxine increase ( intial dosage 88mg, increase of 6mg by combining 88mg + 100mg spread on a week) results were :

- TSH : 0,984 (Range 0,4 - 4 )

- T4 : 11 (6,1 - 12,4)

- T3 : 3,5 (2,5 - 3,9)

So, based on all differents analysis I had, I may think a TSH of 2 could be great, as I felt more or less "okay, normal" when TSH was 1,9 ... But again, with Tirosint, energy variation is so random that I don't even know if that would solve everything...

Indeed, my doctor just does T3,T4, which are FT3, FT4 ? T3 reverse is to check if t4 conversion into t3 is done properly ?

Last time i've done a full check-up in March (when I was feeling hypo), I got those results :

- Vit D : 29 (30-100) - Since, I took a supplementation of Vit D daily

- Ferritin : 32 (30 - 200)

- Folate : 7,5 (>4)

- B12 : 262 (150 - 910)

I think that despite feeling hypo symptoms, the most annoying is that I really feel strong variations of energy level, mood during the day, extreme fatigue it's never constant ... And it's even worst with the very low increase of Tirosint ... Maybe switching from 100mg on one day to 88mg the other days is the answer, or I do not tolerate Tirosint ?

[pennyannie]

Hello Sophie and welcome to the forum :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

Tirosint is a brand of T4 thyroid hormone replacement.

T4 is a storage hormone that needs to be converted in your body into T3 - which is the active hormone on which your body runs and needs in order to function well and survive.

In order for T4 to work well and convert to T3 within your liver we do need optimal core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D.

Conversion of T4 into T3 can also be compromised by inflammation, antibodies, any physiologic stress ( emotional or physical ) depression, dieting and ageing - so a bit harder to manage but worth a mention.

It is essential that you are not dosed or monitored on just a TSH reading as this can be most misleading especially when one does not have a thyroid.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and we generally feel at our best when the T4 is up in the top quadrant of its range as this should in theory convert to a decent level of T3 at around a balanced ratio o 1/4 - T3/T4 :

Some people can get by on T4 only :

Some people find that T4 doesn't work as well as it once did and add in a little T3 - Liothyronine - likely to replace that little bit lost when they ' lost ' their thyroid :

Some people can't tolerate any brand of T4 and need to take T3 only - Liothyronine :

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid, dried and ground down into tablets referred to as grains :

If you go into Thyroid UK - thyroiduk.org - the charity who support this forum - you will find all things thyroid including a full page of private companies who can run the relevant blood tests for you, if your doctor is unable to run the full thyroid panel and vitamins and minerals for you, as detailed above.

Then when you have the results back you simply post the results and ranges of the 10/11 blood analysis and you will be talked through what it all means and forum members, will advise you of your next best step back to better health.

[Sophie4506 in reply to pennyannie]

Hi Pennyannie,

Thank you for all this info, which is very useful. My endocrinologist once told me about T3 only, but he was scared that I felt tachychardy as I explained him that with my low increase of 6mg one year ago, in addition to insomnia, agitation, I was experiencing also tachychardy and had to take betabloquants. I have an appointment with him this week , let's see how it. goes

[pennyannie in reply to Sophie4506]

Maybe your adrenals need looking at as they pick up the slack when the thyroid is struggling ?

Are your core strength vitamins and minerals at optimal levels as again, without a strong inner core strength your body isn't able to well utilise any thyroid hormone replacement well.

[Sophie4506 in reply to pennyannie]

Could be ? I got my thyroid removed 2 years ago, could a disfonctionement of adrenal still have impact on T3/T4 ? I read a very interesting article about adrenal fatigue and impact on thyroid .... When I read the symptomes, it all matches (especially morning fatigue, insomnia and fatigue between 3 and 5pm), but we can't be sure So that could be something. I'll talk about it to my doctor soon.

I had my appointment with the endo today who told me that despite my levels in range I may be hypersentitive to slight dose change and also feel the t4 absorption meaning feeling quite "speed", lack of focus the first hours taking my Tcaps, but again, it's random as this do not happen all the time. Sometimes, I can just feel strong fatigue ad having the feeling to be really awake and connected 5h after taking Tirosint.

He also advised taking Tirosing during the evening. I think i'll give it a try. I don't know if anyone had results on this ?

At the moment, I keep going with the current dose, but he gave me green light to increase with another 100mg once per week (so in total an increase of 3,42mg of Tirosint per week).

I forgot to add that I also have allergy (pollen+dust) with a very low asthma (which appear maybe 1 or twice per year), but a lot of fatigue and eyes issues with this and this summer was particularly intense (never experienced this level of allergy before) so I wonder if fatigue also isn't linked to this ? As it got worst in May, when allergy started, so I guess tiredness from allergy didn't help combined with hypo feeling

But I'll for sure explore the adrenal side and see if I can get blood test for it with my GP .

Thanks for all these info and being that knowledgble ! That really helps !!!

[pennyannie in reply to Sophie4506]

In order for me to be as well as i am I do need to maintain my ferritin at around 100 : folate at around 20 : active B12 75 ++ ( serum B12 500++ ) and vitamin D up at around 100 :

I also take an adrenal glandular :

[Sophie4506 in reply to pennyannie]

Okay, well, have the feeling that despite usually GP Say, being in the low average range is not enough in some cases ...

So you did see a real difference in your hormones levels/dosage since being supplemented in those ? I'm from France, and here, being just at the low average (for Vit D, iron, selenium, calcium ... etc) is considered apparently by GP and endocrinologist more than enough for t4 to t3 conversion to be efficient ...

(Even my GB didn't know the impact of Vit D on absorption ...as they've been taught to rely mostly on the wide range of TSH, T3,T4 ... 😐😐😐).

[pennyannie in reply to Sophie4506]

Well low average doesn't really sit right with me whether it be my vitamins and minerals, my health or my exam results.

When researching my own health issues I read on several well established and recommended websites that ferritin needs to be at least over 70 for the body to be able to convert well the T4 into T3 :

Considering my ferritin was in range but I felt ' rubbish ' I gave it a go and found I felt ' less rubbish ' when I tipped over 50 and much better when I managed to build again up to and over this target number.

We have a less well functioning body - our bodies will need extra support not less -

and why it is so important to have a strong core strength to support our body as well as we can and to compensate where there is a known weakness.

[Britpol]

I am just 4 months post thyroidectomy and have found that eating iodine-rich foods like oily fish, eggs, cottage cheese, etc gives me hyper symptoms, not necessarily the medication. So, I try not to have too much of these foods in a day, by planning more carefully what I eat. Of course, mine can be a unique experience, but it is worth experimenting . I discussed the dosage of Levo with my Endo ( am currently on 100 mcg of Accord and 25 Wockhart; a total of 125 mcg. Agreed I can go up or down on this by 10% ( but no more) in between seeing him and having blood tests, depending on how I feel. Sadly, I owe the luxury of this advice and care to private consultations and am lucky to have a knowledgeable Endocrinologist. Good luck

[Sophie4506]

Hi Britpol, interesting, from what I've red that iodine rich-foods may tend to increase t4-t3 conversion. Well, hopefully it will stay in ranges ! thanks !