Fully suppressed, but I still feel rubbish - Thyroid UK

Thyroid UK

140,288 members165,007 posts

Fully suppressed, but I still feel rubbish

nickym1 profile image
14 Replies

Last Monday I had a follow up appointment with my oncologist. He told me that my TSH is fully suppressed at 0.01, Thyroglobulin was 0.02, but FT3 was elevated. Because of this, he asked me to reduce my T3 from 60 mcg (x3 tabs per day) to 50 mcg per day. I explained that I am still very fatigued, aching muscles etc. His response was that due to being overmedicated, I am going over the peak and dropping off the other side. I don't feel that I have ever 'peaked' since two hemithyroidectomy's in Jan and Feb, followed by RAI in April. Since RAI I have been significantly more tired.

I also mentioned my low body temp, to which he replied "I would be a bad Dr if I prescribed according to how warm or cool you are!" He also said that only a high temp would concern him. I just want to feel more like I used to. So far I'm feeling rather let down and disappointed.

Is there anything else which could be going on? Any advice would be very welcome.

Cheers, Nicky.

Written by
nickym1 profile image
nickym1
To view profiles and participate in discussions please or .
Read more about...
14 Replies
helvella profile image
helvellaAdministratorThyroid UK

How long between your last dose of T3 and the blood being drawn for that test?

If "not long", then that could explain you being under-dosed but test looking as if you are over-dosed.

Rod

in reply to helvella

>If "not long", then that could explain you being under-dosed but test looking as if you are over-dosed.

That is a very good point. Due to the variability in T3 blood levels over the course of the day in patients on liothyronine tablets, I'm not convinced that measuring T3 levels is useful in this population - the 'normal range' for free T3 cannot readily be applied. 'Normal' levels are likely to be exceeded after each dose but levels may drop abnormally low at the end of the dosing interval.

>he asked me to reduce my T3 from 60 mcg (x3 tabs per day) to 50 mcg per day.

Do you take the full dose at once or in divided doses throughout the day?

nickym1 profile image
nickym1 in reply to

Yes I take 20mcg morning, 20 mcg lunch and 10 mcg teatime. I try to avoid taking tablet at mealtimes by at least 30 mins both sides (if that makes sense).

I feel bewildered at the lack of knowledge from my surgery, and even the hospital. I am not being given information or guidance or support. Nobody ever seems to have a complete set of notes/results or know what medication I'm on/how much. (sorry, rant over).

I had to inform my surgery about tsh suppression, as the nurse practitioner did not know, and told me my tsh should be higher. It's all rather hard work....

(sorry, again!)

nickym1 profile image
nickym1 in reply to helvella

Hi Rod, I would have taken a tablet around lunch time (12-1pm ish) and my blood was drawn about 4.35pm.

I just don't understand why I'm still very tired - not sleepy tired, mainly physically. A year ago I was a fairly fit person. Some days now, I even struggle with stairs. If I am overdosed, surely I'd be hyper?

helvella profile image
helvellaAdministratorThyroid UK in reply to nickym1

So that makes me think you took one tablet early in the day, another at around 13:00, then your third somewhat later. Is that right?

Serum level of T3 rises for a while after taking the tablet, then falls away more slowly. 16:35 would have been well within the range for showing an artificially raised level from the 13:00 dose. Further, that 13:00 dose might have pushed T3 a bit higher because your T3 had already been lifted by the first dose. (All assumptions!)

If, for example, you had got up, gone straight for blood test, then taken T3, the story would very likely have looked completely different.

Does that make sense?

Rod

nickym1 profile image
nickym1 in reply to helvella

Sorry Rod, wrote huge message then phone died, and message was lost. Child had taken charger, so couldn't charge - aarrggghhh!

I find it all a bit much really. It's quite complex isn't it? I wish the medical professionals looking after me, would give the correct information, guidance and support required. Different people at my surgery have told me that I have a specialist condition beyond their range of expertise, but since they have to treat me between hospital appointments, are they not obliged to 'read up'?

Even my cancer nurse can't give straight forward answers without speaking to the Oncologist Dr.who only seems to be in twice a week, then is far too busy to answer questions immediately. Then says, see your GP (who I know, knows nothing and would refer me back to hospital, with another 2 week + wait for appointment!) I'm ranting again - apologies.

Apparently I eventually find out that it's perfectly normal to have a very constricted throat post op/rai.

Also found out recently that some patients are given post op exercises to do. I wasn't. Nobody ever mentioned exercise to me.

Very frustrated. They even changed my diagnosis without telling me. I found out via a cc letter to surgery that my ca was follicular, not papillary.

Cheers Rod,

Nicky :-(

helvella profile image
helvellaAdministratorThyroid UK in reply to nickym1

I have a sort of very tiny bit of a dream.

When we are diagnosed, the doctor presses a button and a little book pops out of a printer. Nothing fancy but a basic "this is what you have got" with some advice and pointers.

Until then, we all have to do what we are doing - ask the internet, Dr Google, Nurse TUK, etc. And I shall silently bent my spleen at doctors who tell patients not to look up anything.

All the best

Rod

nickym1 profile image
nickym1 in reply to helvella

Thanks Rod. Wouldn't it be nice if that magic printer existed. Until then.......:-\

nickym1 profile image
nickym1 in reply to helvella

I was told that cats have a fasting blood test first thing for thyroid. Why doesn't my Dr tell me to do the same.

Yes, your comments above do make sense.

I also wonder whether my adrenals are acting up. Before diagnosis, my Dr explained that a lot of my symptoms were due to adrenal issues. I also lost my younger sister age 35 to cancer less than a year before my diagnosis, so I believe that intense stress and grief have played a part in all of this.

helvella profile image
helvellaAdministratorThyroid UK in reply to nickym1

I'd consider posting that as a new question, if I were you. I feel very under-aware on adrenal issues. Others are far better at offering advice from their experiences.

Life can be very harsh. I cannot imagine what it is like for you.

Rod

rosetrees profile image
rosetrees in reply to nickym1

Low body temperature can certainly be a sign of adrenal fatigue. It's what I have and my temperature fluctuates. Until just a few weeks ago it was always around 35.5 - had been since I was a teenager. I am taking a high level of adrenal support, on the advice of Dr P. My temperature has risen by an average of 1 degree. It is now usually something between 36.2 and 36.7, but varies from day to day.

If you think you might have adrenal problems, take a look at this adrenalfatigue.org/take-the..., It might also be worth ordering the Genova 24hr saliva test.

nickym1 profile image
nickym1 in reply to rosetrees

Thank you rosetrees, my normal adult temp has always been 36.4, but is currently frequently as low as 35.5. I know this is not correct for me. I will investigate further. Do dr's have knowledge of adrenal testing, or do I have to do it myself? If I DO it myself, can I take results to them for treatment? Questions, questions.....thanks x

rosetrees profile image
rosetrees in reply to nickym1

My GP has no interest at all in my treatment. I haven't seen him for weeks. I saw Dr P and am following his advice and treatment regime. I took the Genova test before I saw him, so had the results with me.

Another adrenal clue is what your blood pressure does when you stand up. Dr P asks you to measure it sitting and standing. When I crashed a few weeks ago I could see that my BP dropped dramatically on standing. Once I came out of the crash that stopped happening.

Dr P does phone consultations if you can't get to see him. His contact details and clinic dates are here tpauk.com/content/1330/dr-p...

Margo profile image
Margo

Was interested in your post nickym1, I too have had a thyroidectomy and RAI x 2. Today I am so fatigued after recently upping my T3 dose to 70mcg. I too have low temperature. I would like to think my adrenals are much healthier these days. Have just ordered some Armour, in the hope of a bit of Armour with the T3 may help things.

Just to say really you are not alone in trying to find some answers.

Not what you're looking for?

You may also like...

Weird labs, Still feel utterly rubbish, please help:

Hi everyone. Been a crazy few past months getting tests done and such since I've posted. I am...

I feel so low

Thank Goodness I`m seeing my GP tomorrow as my blood pressure is through the roof. I know he`ll...

Upped liothyronine dosage- side effects

Hi again, everyone. In another post, I mentioned having some severe hypothyroid symptoms. I had RAI...

Taking Levothyroxine but still feel ill

Hi everyone. I'm 20 years old and I was diagnosed with 'borderline' hypothyroidism in April (though...

TSH dropped but still feel unwell

Hello, I was diagnosed with an under active thyroid in February after feeling unwell for a long...