Not functioning!

[AleB]

Since my last post, I have been trudging the never ending exhaustion and pain of trying to function as best I can. Now my body has decided enough is enough ... it's getting worse. I have had constant stabbing in my right adrenal (2 courses of antibiotics), CT scan of kidney/adrenals/bladder area, and ultrasound scan, all clear.

For the past 3 weeks, I have felt off balance, dizzy, low body temp not much past 36.3 but 36.0 first thing on a morning, dry skin, brittle nails, hair loss, bone cracking and muscle fatigue. Also my blood pressure is low for example:

7.15am Temp 36.0 BP 95/67 65pulse

11.10am Temp 36.1 BP 94/77 61pulse

2pm Temp 36.1 BP 106/79 62pulse

5pm Temp 36.4 BP 82/65 62pulse

It's been like this for the past 2 weeks.

I did a private blood test this week 22/09/21 8.40am fasting

CRP <0.3mg/L (range 0-5)

Ferritin 83.70 ug/L (range 13-150)

Folate - Serum >19.8 ug/L (range >3.89)

B12 Active >150 pmol/L (range 37.5-188)

Vitamin D 124.00 nmol/L

TSH 1.22 mU/L (range 0.27 - 4.2)

Free T3 3.12 pmol/L (range 3.1 - 6.8)

Free T4 20.100 pmol/L (range 12-22)

TgA <10 IU/ml (range <115)

TPA 19.90IU/mL (range <34)

I am strictly gluten and dairy free. I have a full feeling in my thyroid and a weird feeling (lymph) between the ear and the jaw, very hoarse voice, nasal drip, I can't walk very far, and by 11am I'm knackered, my blood doesn't seem to be flowing.

I have been on the following dosage since 12/04/21

Levothyroxine 125/100/100/125/100/100/125 then repeat.

The GP hasn't a clue, I'm wasting my time with NHS endo who discharged me back to the GP in June (only saw her once, didn't want to give T3).

The problem I find, is when in the past I have tried to introduce T3 (and I mean a shaving) my body doesn't like it, chest tightness on day 4, sleepless nights, sweating etc. I'm stuck! Last summer I was on 112mcg per day, but constantly in bed. Not sure if I should increase by 25mcg levo or try and pursue T3 again. Years back I was on a much higher dosage, but since removing gluten and sorting my diet, I've been trying to get the dose on Levo as best I can. I am a rubbish convertor, I also have the DIO2 gene polymorphism. Sorry for the very long post!

[SlowDragon Administrator]

Which brand of levothyroxine are you currently taking

Which brand of T3 have you tried

Yes, going to need to trial T3 again

Have you tested cortisol and DHEA?

Roughly where in U.K. are you

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

Is pain in right kidney/adrenal gland like hot sharp needle pain?

[AleB in reply to SlowDragon]

Hi SlowDragonYes my right flank is like a hot rod stabbing pain. I also have tremendous hip pain, especially the right side. The current brand of lemon is Accord and has been for the past 2 years, Cortisol and DHEA haven't been tested properly, GP only ran 9am cortisol blood on 13th July 2021, result 256nmol/L. I am also having trouble focusing my eyes, gradually getting worse! I am based in Cheltenham. X

[SlowDragon Administrator in reply to AleB]

Sent you private message

[SlowDragon Administrator in reply to AleB]

Your conversion rate is really terrible

Ft4 81% through range

Ft3 only 0.54% through range

Assuming last dose levothyroxine was 24 hours before test ?

Probably worst conversion rate ever seen

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

[AleB in reply to SlowDragon]

Oddly enough I went back months and months ago to get the percentage through range calculator, I have applied it to every blood test going forward... and I know it's dreadful. Always do bloods as early as phlebotomy is open, and fasting and never ever take meds until after blood has been taken. I've improved every vitamin, chucked zinc and selenium and I still have poor conversion, even after improving diet, over 3 years ago! I'm just pushed back by the GP and NHS Endo just doesn't want to give T3... I'm going to have to get a loan to go private again! I just hope I source a half switched on endo!!