Plea for help or advice re Hypothyroidism from potential sufferer

[Cassie213]

Hi all

I would be so grateful if some of you might be able to offer some advice to a potential hypothyroidism sufferer. I've suffered with brief bouts of chronic fatigue for a few years now but in Feb this year I was taken ill with a balance disorder, nausea, tinnitus, head buzzing, chronic fatigue, pain, feeling like I have flu most of the time, some days I can barely shower without utter exhaustion, if exert myself it takes two or three days of feeling utterly wiped and like I have flu before i recover, can't work, mood swings, brain fog, eyebrow loss at outer thirds, finger nail ridges and so many more symptoms that I've just thought were just me, terrible PMS, extremely heavy periods etc. As all of my symptoms fit hypothyroidism I insisted my GP refer me to an endocrinologist, both were worse than useless with no knowledge of how the thyroid works but, only after I had a breakdown in his office, the endo agreed to fT3 and fT4 bloods despite my TSH being 2.7 and being repeatedly told that as my TSH is normal my thyroid is fine. It was also discovered during a neck ultrasound 12 years ago that my left thyroid lobe is missing and at the time I was told my thyroid was low (?), I was very ill at the time so may not remember that correctly although I never received any treatment. I have now seen the results of the blood tests and was hoping somebody here might be able to tell me if they look like hypothyroidism before I speak to my GP and am told they are 'normal'. These are my TSH, fT3 and fT4 results along with some other blood tests which are or seem to be low / abnormal. My B12 and D are also both at the low end of the scale though GP considered normal and haven't improved since I started taking supplements recommended by a nutritionist friend 2 months ago. My white blood cell counts are also low.

Serum TSH2.70mIU/L - range 0.27 – 4 (was 2.28 July 2019)

Serum Free T416Pmol/L - range 12-22

Serum Free T34.2Pmol/L range 3.1 – 6.8

Serum Alkaline Phosphatase59U/L (range 30 – 130 )

Serum Total Protein66g/L - range 60 - 80

Serum Cortisol342Nmol/L 137 – 429

-- Cortisol reference range applies to samples taken at 09.00 hrs. Please interpret in the clinical context. A value of >440 nmol/L makes adrenal insufficiency unlikely

Serum 25-Hydroxy Vitamin D 97 Nmol/L - range 50-200

Haemoglobin130 g/L - range 125-165

White Cell Count4.30 10*9L - range 4.0 – 11

Red Cell Count4.2810*12L - range 3.8 – 5.8

Neutrophilis2.5110*9L - range 2 – 7.5

Lymphocytes1.1810*9L - range 1.50 – 4.00

Monocytes0.4510*9L - range 0.2 – 0.8

If anybody is able to offer any thoughts or advice I would be so grateful.

Very many thanks

[silverfox7]

Thyroid readings look on the low side but not experienced at looking at readings before diagnosis. But have a look at the Thyroid Uk site as they run this forum and they have lots of info which if you are diagnosed you will find helpful plus it will give you a greater understanding as to why you feel like you do and the tests that have been done.

[Cassie213 in reply to silverfox7]

Hi SilverFox, very many thanks for your response. It is all so complicated, only made more so by GPs and endocrinoloists knowing nothing about the Thyroid.

[silverfox7 in reply to Cassie213]

Takes a while to head your head round it, especially if not feeling well.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Can you add B12, folate and ferritin results if you have them

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ever had thyroid antibodies tested?

Ask GP to test folate, ferritin and thyroid antibodies or test privately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you did your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

thyroiduk.org.uk/tuk/About_...

Most endocrinologists are Diabetes specialists and useless on Thyroid

[Cassie213 in reply to SlowDragon]

Hi SlowDragon,

Many thanks for taking the time to respond to my message. So far I've only had my TSH, fT3 and FT4 done and it was a massive struggle even to get those. I had the tests done at around 9.30 am and hadn't eaten since the previous night. I had drunk some water and a weak black tea with lemon. The Endocrinologist clearly knew very little about thyroid and couldn't look past the normal TSH result, told me my thyroid is fine and only did the fT3 and fT4 because I basically ended up breaking down in tears of frustration and having to show him research I'd printed off showing TSH is not the best way to measure thyroid function. Pushing for Thyroid Antibodies and rT3 was just too much to try at the time. I had my B12 tested in July and it was quite low (has been for at least a year apparently but as it was within range I was, of course, told 'its normal', I've been taking B12 drops for 2 months to try and get it up but no recent blood tests. My Vit. D was 58 in July - barely within range, especially for the middle of summer - but I was told by me GP it was normal, have been taking 1000 (not sure what the measure is, but high dose) of vit D a day for two months and it has increased to 98 - still low on a scale of 50 - 200. Serum Ferritin was 30 (scale 13 - 150) in July and I have been low iron a number of times over the last few years, every time I get tested in fact and I have been a few times because I've complained of exhaustion! Folate is low! Cholesterol is high, white bloods are at the bottom of the scale as are Nutrophils and Monocytes. Lymphocytes are 1.18 on a scale of 1.5 - 4.00, and it was only at 1.33 in July.

Sorry, I know that is bombarding you with loads of info but am very grateful for any advice or knowledge you can offer. i suspect my GP and endo and both going to say my results are fine as they never seem to join the dots or consider anything if its within range, even if its low.

Very many thanks.

Cassie

[vocalEK]

Your doctor may be happy with your TSH because it is "in range", but your thyroid hormones are quite low: FT4 is only 40% through the range, and FT3 is even worse at 29.73%.

Dr. Westin Childs has this to say about TSH:

Truly "healthy" people have a TSH < 1.0 and yet the "normal" range extends all the way out beyond 4 in this case.

That means your Doctor won't flag your TSH as abnormal unless it falls outside of those reference ranges.

​But as I mentioned above it is important to consider that your pituitary is the MOST sensitive tissue to thyroid hormone in your body.

That means it is entirely possible to have a "normal" but less than "optimal" TSH.

By these new standards, you can consider a TSH which is greater than 2.0 to be an early indicator of some thyroid dysfunction in the body.

restartmed.com/tsh-levels/

He also says

Free T3 ahould be in the top 50% of the reference range and Free T4 generally in the mid-range if NOT being treated with thyroid hormones.

Most folks treated for hypothyroidism don't feel truly well until their TSH is below 1 and their "free" thyroid hormones are in the upper part of the reference range. In most cases, treatment is life-long.