Oh boy, stumped again about what next,,, - Thyroid UK

Thyroid UK

137,775 members161,576 posts

Oh boy, stumped again about what next,,,

MaxiFrustrated profile image
2 Replies

Big hellos fellow Hashi-Hypos

Long time no post but, alas, I have another chunky log of tests and symptoms to submit to your collective expertise. Tried to make it easy on the eye - hope that's worked:

As per advice of some of you guys and private functional medicine GP ( Dr C in Hendon) on November 15th, 2015, I gradually came off two grains NDT (Thiroyd) through December and resumed taking two Nutri-Thyroid daily. He said it didn't seem I was getting enough of a boost our of the NDT. 

Stopped everything on January 1st, 2016. 

That is everything but daily multi-vitamin, omega 3, vitamin D 1000 spray, Jarrow's B12 3,000 twice weekly, ferrous fumarate 210g twice weekly with vitamin C.

Symptoms: always tired (still no job, living on savings; classic post-meno lack of motivation?) but sleeping fitful 10 - 11 hours per night; wake up at 0730 but so fuzzy-headed (groggy) that I seem to stick to duvet. 

Jan 15th, 2016 - 1.5 months after quitting Thyroid NDT

lethargy

loss of eyesight - acuity / contrast sensitivity 

spirit-sapping weight gain (6 kilos to 86 kilos when I used to be 63 on a fat day)- tummy massive (like swallowed basketball); weight just clinging to me on modest, healthy diet full of macro  micro nutrients - still no gluten, booze, processed foods; 

can feel facial skin thickening - face fuller / puffy; eyelids extremely puffy, upper lids sometimes resemble fat caterpillars. 

hair thinning at temples and behind ears - visible stripes of scalp when scraped back - v very distressing. 

**************************

Feb 23rd, 2016 endo blood test (hospital ranges)

TSH 2.26 (0.3 - 4.2)

FT3 3.3 (2.5 - 5.7)

FT4 8.9 (9 - 24)

Ferritin 52

HbA1c (fasting blood glucose) 38

************************

April 15th, 2016 (GP ranges)

TSH 4.1 (0.34 - 5.6)

FT3 - surprise surprise they did not do it. Sigh. When queried, GP: "not necessary a your TSH is normal; we just need the FT4"

FT4 - 9.5 (7.5 - 21.1)

Symptoms: Feeling huge, like wearing Michelin Man suit. Sleeping well though still hard to get up; bowels perfect, still no gluten, no processed, no alcohol bar the odd glass of red every two weeks or so 

****************************************************************

For handy reference, blood + symptoms history:

August 19th 2015 bloods GP - three months on NDT raising slowly to 2 grains

note: ranges vary

TSH 0.03 (0.34 - 5.6)

FT3 - 4.7 pmol/L (3.8 - 6.8)

FT4 - 10 pmol/L (7.5 - 21.1)

Ferritin 49 (11 - 336)

B12  472 (180 - 914)

Vita D 74 (>75 optimal)

*************************

After three months NDT, outer third of eyebrows have regrown, feet seldom cold, face less swollen, more energy. Tried 2.5 grains for three days but got waves of heart flutters so cut back to 2 grains, - which seemed to be my sweet spot.

**************************

Aug 19th 2015 bloods (GP)

TSH 0.03 (0.34 - 5.6)

FT4 10.00 (7.5 - 21.1)

FT3 4.7 (3.8 - 6.8)

B12  472 (had stopped supplementing for a couple of months) 

Vita D -  74 (supplementing)

Ferritin 49 (11.0 - 336.0) (low so resume supplementing)

*************************

Oct 20th 2015 - 5.5 months on two grains NDT, occasional 2.5 grains (GP blood test ranges)

TSH <0.01 (0.3 - 4.2)

FT4 14.6 (7.5 - 21.1)

FT3 6.0 (2.5 - 5.7)

TPO 320 

Ferritin 83 (nicely higher)

Symptoms: feeling better although still have crash days of extreme fatigue 

hair texture improved - thanks to higher ferritin

resume supplementing B12 twice weekly

keep supplementing vitamin D3 3000 daily, iron ferrous fumarate 210mg twice weekly + 500mg vitamin C

take multi-vitamin with 55mcg selenium, 150mcg iodine

take Omega 3 1000 one cap / day

===

That's the lot guys. Do I stick with nothing for another month hoping my thyroid will eventually kick back into action or resume NDT supplementing? 

Next endo appointment likely not for four months but I always get The Student anyway; nothing happens. And judging by GP's latest assessment of TSH of 4.1 as "normal". I wouldn't get much joy fighting for thyroxine. Maxi-frustrated on steroids. 

Cheers all and thanks in advance for weighing in... 

Written by
MaxiFrustrated profile image
MaxiFrustrated
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Clutter profile image
Clutter

MaxiFrustrated,

Positive thyroid peroxidase antibodies (Hashimoto's) means it would be pragmatic to prescribe Levothyroxine to prevent progression to overt hypothyroidism.  It appears your GP isn't going to help you until TSH is >5.6 or FT4 is <7.5 despite this.  If you felt better taking 2 grains NDT I'd be inclined to resume self medicating rather than waiting until you feel much more unwell and meet NHS levels for treatment.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

chriskresser.com/the-gluten...

__________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

MaxiFrustrated profile image
MaxiFrustrated in reply to Clutter

Thanks as ever Clutter. I will review those pages tomorrow when my brain isn't fried from the day's gymnastics. 

I will also fork out more £££ to see what the functional meds doc, who is also a GP, says about all. 

I had sincerely hoped the latest reading would be less than February's 2.26. 

He may well say to take more Nutri-Thyroid again - I dd have my highest FT4 and FT3 numbers on them a year and a half ago so, hey ho...what a puzzle. 

Feels like I've done a full circle to April 2013 when a TSH of 3.48, with the presence of Hashi's antibodies, was logged. 

You may also like...

Results advice please after 3 months NDT (Thai Thiroyd)

bed: *note: ranges are different* TSH 0.03 (0.34 - 5.6) FT4 - 10 pmol/L (7.5 - 21.1) FT3 - 4.7...

Getting My FT3 back up again and what about RT3?

bed for days at a time. June/2016.. TSH .004. FT4 1.3 (.7-1.8) FT3 2.75 (2.3-4.2) RT4 20...

Am I undermedicated? What should my next steps be?

5th July: TSH 1.2 (normal range 0.27 - 4.2 mU/L) FT4 15.2 (normal range 12 - 22 pmol/L) FT3 4.6...

What's the next step?

2) FT4 - 19.3 (12 - 22) 73% FT3 - 4.2 (3.1 - 6.8) 29% was previously TSH -1.37 (0.27 - 4.2) FT4 -...

What should be my next move?

Best I had in a decade. TSH: 0.39 FT4: 11.3 (12-22) FT3: 5.6 (3.1-6.8) 20/02/23 -...