Almost 9 months post Radioactive therapy and still not feeling good

[Gigi1806]

Hello all,

Following up on my previous post, I have been for another blood exam including a vitamin control as I still feel bad and unhealthy. The doctors keep insisting that is not my thyroid that causes my problems but they also refuse to tell me what else can be.I have been checked from head to toe and nothing was found. In addition, all other doctors pointing to the clinic I did my therapy and that all my symptoms are due to unbalanced hormones.

My lab came on Friday and here is where I am standing:

Hamatocrit: 39.1 (37-43)

TSH: 2.92mIU/ml (0.27-4.20)

T3: 2.97pg/ml (2-4.30)

T4: 1.45ng/dl (0.90-1.90)

B12: 686pg/ml(197-771)

Folate: 9.3 ng/ml(3.9 -100)

Ferritin: 57ng/dl (15-150)

Iron: 125 mg/dl (37-145)

D3: 34 ng/ml (30-100)

Cortisol, basal : -8.3mg/dl (10-25)

I feel so confused and unpredictable what each day brings as my symptoms varry and have left my life behind. I barely can leave the bed from fatigue, brain fog, lightheadedness, my blood sugar drops in a second out of the blue and cannot see very well although I have visited twice an eye doctor and nothing was found.

I am currently taking 50 levothyroxyn daily and per my endocrinologist my TSH should drop further in the next 3 weeks until he sees me again - Goal is to drop it to 1.50 where I feel the best.

We tried to increase the daily dosage to 63 but my THS dropped to 0.4 from 9 just in 6 weeks and I was suffering with overfuction symptoms, so since August I am back to 50.

Any advice will be apreciated!

Thanks

[SlowDragon Administrator]

previous post here

healthunlocked.com/thyroidu...

Was test above done early morning and last dose levothyroxine 24 hours before test

Free T3 (fT3) 2.97 pmol/L (2 - 4.3) 42.2%

Ft3 still on low side and dropping slightly from last test .

Free T3 (fT3) 2.59 pmol/L (1.6 - 3.9) 43.0%

Suggest you try very small increases in Levo as you are struggling to tolerate

Initially add extra 12.5mcg just 2 days a week

Retest in 6-8 weeks

Can see you have been working on improving low vitamin D - aiming for increasing up to around 40ng/ml

Please add Germany as country of residence to your profile

[Gigi1806 in reply to SlowDragon]

Yes the test was done under no lev and supplements and around 10am

I take some basic vitamin D but I am not even sure that its the right one or if I need more. Same as ferritin and folate, which I find genuinely low.

My doctor said that T3 and T4 are perfect and he doesn't get why I am having such symptoms which makes me more worried and confused!

My residence is added on my profile

[SlowDragon Administrator in reply to Gigi1806]

Was last dose Levo 24 hours before test

[Gigi1806 in reply to SlowDragon]

yes

[SlowDragon Administrator in reply to Gigi1806]

FT4: 1.45 pmol/l (Range 0.9 - 1.9)

Ft4 only 55.00% through range

Many, many people when adequately treated on just Levo will have Ft4 (Levo) at least 70% through range

Your results suggest you are on inadequate dose Levo

Definitely get low cortisol investigation

It can be vicious circle

Can’t tolerate increase in Levo because of low cortisol

But cortisol is too low because of being on inadequate dose Levothyroxine

You may be able to very slowly increase Levothyroxine up over several months

Or may need addition of small doses of T3 prescribed alongside Levothyroxine

Adding T3 often improves low cortisol

[SlowDragon Administrator in reply to Gigi1806]

My doctor said that T3 and T4 are perfect and he doesn't get why I am having such symptoms

Well many, many thyroid patients would find Ft4 at 55% and FT3 at 42% far too low

[Gigi1806 in reply to SlowDragon]

How do you find the rest of the vitamins? I remember seeing a lot about having everything optimal but I feel mine are rather on the lower side.

[greygoose]

What are they doing about your very low cortisol? Not surprised you don't feel well!

[Gigi1806 in reply to greygoose]

they didn't even mentioned it. I discovered it when I requested a copy so I can check all values. But as for the doctor, it doesn't end up that I don't feel good for months now, which is shocking to me

[greygoose in reply to Gigi1806]

It's below range, so I think you should point out to them that you might have Addison's and they should test for it. Your low cortisol is probably why you're having trouble raising your levo.

[Gigi1806 in reply to greygoose]

Many thanks for your input, I hope they take it serious, and do run a test

[greygoose in reply to Gigi1806]

I hope so, too, because it's really very low and bound to be making you feel bad.

[JumpJiving]

  Gigi1806 Could you check back to your original test results please, as there would appear to be a typo in the line "Cortisol, basal : -8.3mg/dl (10-25)"

If that was indeed supposed to say 8.3, you need to follow up on that urgently. An early morning (8-9am) cortisol blood test returning low results indicates adrenal insufficiency (or an even rarer cyclic ACTH condition). Post radioactive therapy, likely alongside various medications, you need to find out why your cortisol is low (initially checking for primary vs secondary vs tertiary adrenal insufficiency), and manage it using hydrocortisone (or equivalent) if it wasn't transient. As 3 months have passed, your practitioner might insist on repeating the early morning cortisol blood test, but if it wasn't transient (or if the practitioner decides to work from the existing result) then you need a referral to an endocrinologist experienced in adrenal insufficiency (most endocrinologists are not unfortunately). The endocrinologist should test your ACTH level and perform a SST (short synacthen test, although goes by other names too, particularly outside the UK). The SST result would be available same day. The ACTH result can take a couple of weeks or so to come back. Regardless, with low cortisol, you should be started on hydrocortisone (or equivalent). Depending on the results of the SST and ACTH test, you might need further tests and possibly a scan (or two), but the key thing is to get you started on hydrocortisone (or equivalent) once low cortisol is confirmed.