End of the road or new beginning Help required - Thyroid UK

Thyroid UK

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End of the road or new beginning Help required

TiTre profile image
21 Replies

Hi All

I really need soome help ive been to every doctor I can I also tried alternative too nothing has helped. Its time i think I try and help myself but I really need some advice.

Im diagnoised with underactive thyroid I take 50 Eltroxin 20 Thybon 60mg CQ10.

Im still exhasted bed 9 o clock most night Im really stuggling weight will not come off no matter what diet I have tried since going gluten free Ive stopped gaining which is great. My diet is not great I just dont eat enough food.

My bloods to date

WBC 7.6 3.9-11.1

RBC 4.67 3.88-4.99

Haemoglobin 13.5 11.8-15

PVC 0.400 0.305-0.465

MCV 85.7 79.1-100.8

MCH 28.9 27.0-33.0

MCHC 33.8 31.0-36.9

Platelets 250 140-400

Neutrophils 5.33 1.7-6.1

Lymphocytes 1.79 1.0-3.2

Monocytes 0.22 0.20-0.92

Eosinohils 0.20 0.03-0.46

Basophils 0.04 0.02-0.09

Monospot Negative

Urea 4.7 2.5-7.8

Creatinine 66 50-98

eGFR 87

AST (GOT) 23 5-34

Renal Function Test

Calcium 2.36 2.10-2.55

Phosphorus 1.03 0.8-1.5

U/E LFT Lipid

Sodium 139 133-146

Potassium 4.4 3.5-5.3

Chlorides 107 95-108

Bilirubin 8.0 3-21

Alkaline 70 30-130

Gamma GT 13 9-36

ALT 12 10-55

Cholesterol 4.3

Triglycerides 1.10

Cholesterol HDL 1.52

Cholesterol LDL 2.49

Protein 71 60-80

Albumin 32 35-50

C Reactive Protein 7 0-5

Vit B12 383 20-1100

TSH 1.10 0.5-4.40

T4FRee 10.7 10-20

Anti TPO <28 0-60

ESR 16 0-18

Rheumatoid Factor <17

Antinuclear Negative

Feritin 46 6.9-282.5

Iron 18.2 9.0-30.4

Transferrin 3.3 1.8-3.82

Satuation 22 15-45

TIBC 83 42-80

Vitamin D52 50-125

What supplements should I take and also should I do an adrenal test or are there other tests to look at.

I have to do something feel like life is just passing me by.

Thanks for taking the time to read I know its a long post.

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TiTre
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21 Replies
Deniseelk profile image
Deniseelk

CRP and ESR look high. Rheumatoid Factor High (?). I also wonder why this was tested? Have you seen a Rheumatologist and do they suspect you have inflammation in the blood? Have they run an anti CCP blood test? No medical knowledge but I do have Rheumatoid Arthritis so I would question that line. Hope you get results soon that help you on a path of recovery!

TiTre profile image
TiTre in reply to Deniseelk

Hi Deniseelk

They tested because I have joint pain and swelling... they stuck it under heading of chronic fatigue and fibromyalgia...

Deniseelk profile image
Deniseelk in reply to TiTre

Interesting, may be worth you just questioning that line and enquire if you should see a Rheumatologist who specialises in inflammation in the bloods.... especially as you feel you do not have answers / medication not resolving your issues. I would keep a diary of symptoms daily ready as it can be invaluable for the specialist to give a clearer picture of what you are going through. Best of luck.

shaws profile image
shawsAdministrator in reply to TiTre

One of our deceased doctors was an expert in fibro and CFS which he stated was due to a person being 'thyroid hormone resistant' and would only recover on large doses of T3. I doubt any doctor/endo in the UK is aware of such a problem as 'resistant'. Anyway I will give you some links which may be helpful as we do know many doctors/endos have no knowledge at all of symptoms which are supposed to be relieved.

web.archive.org/web/2010103...

The prohormones, i.e. B12 and Vit are too low and will give symptoms as well.Get vit B12 checked to make sure you don't have Pernicious anaemia and low numbers could indicate, in future, dementia. We can supplement with B12 but not until it your test excludes P.A. Taking B12 can mask deficiencies of P.A. The P.A. society recommends number to be nearer the top.

Others will respond re Vit D.

web.archive.org/web/2010103...

Copy and paste the following tinyurls into a new page(s):

tinyurl.com/ya5blrr2

tinyurl.com/y7ejh9sh

tinyurl.com/ycxpz565

TiTre profile image
TiTre in reply to shaws

Hi Shaws

Funny u say that abt huge doses I had a doctor who sadly has passed away who used huge doses of T3 to treat me i was his patient for 2/3 years and it was best I ever felt all weight fell off energy was up... my dose went up to 120 a day of T3 first thing he always did was take my temp... my doctors wouldn't keep up his prescription when he passed away even tho I was flying..

This PA can a blood test show it up... just to add I have low stomach acid too...

Thanks

greygoose profile image
greygoose

Your TSH is euthyroid, but your FT4 is very low. What you need is your FT3 tested. If that is also low, then you need to consider Central hypo, where the problem is with your pituitary/hypothalamus rather than your thyroid.

46 6.9-282.5All your nutrients are too low and need supplementing - which will make you feel bad in itself.

Vitamin D52 50-125

Needs to be at least over 70.

Ferritin 46 6.9-282.5

Should be around 100.

Vit B12 383 20-1100

Needs to be at least over 550.

I can't see a folate result.

TiTre profile image
TiTre in reply to greygoose

Hi Greygoose

Ft3 is hard to get tested I'm going to privately get tests done is there other tests I can get done the same time...

greygoose profile image
greygoose in reply to TiTre

Yes, folate is important to test. And, as you're going private, it might be a good idea to test antibodies : TPO and Tg antibodies. :)

TiTre profile image
TiTre in reply to greygoose

I'll check blood results c if folate was in it

Anti TPO <28 0-60

TiTre profile image
TiTre in reply to TiTre

Hi Grey goose

It's April 17 last time folate was tested

Ferritin 40 6.9-282.5

B12 513 200-1100

Folate 5.3 3-14

This would need to be repeated

Thank you for help...

greygoose profile image
greygoose in reply to TiTre

Your B12 was better, then, but could be higher. Ferritin too low. And folate too low.

greygoose profile image
greygoose in reply to TiTre

OK, so that's TPOab was negative, but doesn't rule out Hashi's. You also need your Tg antibodies tested.

TiTre profile image
TiTre in reply to greygoose

Hi Greygoose

Thank you for advice I will supplement those and get the further tests done..

Thank you for the replys I really do appreciate it....

Kind regards

Sharon

greygoose profile image
greygoose in reply to TiTre

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Taking a good quality daily vitamin B complex with folate in should help improve B12 and folate. Eg Igennus Super B complex or Jarrow B right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D is too low. Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 2000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Eating liver or liver pate once a week should help improve low ferritin

Your FT4 is very low. You are only taking 50mcg of Eltroxin. Suggest you try increasing Levo dose by 25mcg and retest in 6-8 weeks. Many of us find we need good FT4 and FT3.

How much Levo were you taking before T3 was added?

Best to make only one change at a time. Waiting at least 10 days to asses each change

TiTre profile image
TiTre in reply to SlowDragon

Hi Slowdragon

Thank you for info on vitamins...

I've always been on some dose of t3...

SlowDragon profile image
SlowDragonAdministrator in reply to TiTre

So you never started on just Levothyroxine?

Are you based in UK?

TiTre profile image
TiTre in reply to SlowDragon

Hi Slowdragon

I had Hodgkin's lymphoma at 23 and was very sick I was left with what they said was chronic fatigue and fibromyalgia... all my bloods were ok my thyroid looked fine I got sicker and sicker until I literally couldn't get out of bed.. I found a dr here in Ireland he treated me with huge doses of T3 only he felt I had thyroid issues and mitochondrial distinction... I felt very well for a few years he sadly got sick and passed away.. none of my doctors felt his approach was correct....

I'm back to square one only difference now is my blood show underactive thyroid...

SlowDragon profile image
SlowDragonAdministrator in reply to TiTre

Sounds similar to many patients treated by Dr Skinner here in UK. They also now struggle to get treated

At least your bloods now show you are under active

Would suspect hypothyroidism is as possible result of your treatment for Hodgkin lymphoma

academic.oup.com/jcem/artic...

nejm.org/doi/full/10.1056/N...

ncbi.nlm.nih.gov/pmc/articl...

TiTre profile image
TiTre in reply to SlowDragon

Hi Slowdragon

It is good bloods show it now but doctor feel they have treated me to a level my bloods are good doesn't matter how I feel they done their job...

Thyroid was def damaged from radium.. I also suffer headaches,dry eyes, sores inside nose and mouth, very frequent sore throat and swollen glands... ears nose and throats doctor have done range of autoimmune tests nothing showed up...

TiTre profile image
TiTre in reply to TiTre

Thank you for info slowdragon

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