Undiagnosed and Confused: Hi all I've stumbled... - Thyroid UK

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Undiagnosed and Confused

ELLJAMO profile image
12 Replies

Hi all I've stumbled upon this forum as I've been posting on Reddit but it isn't very active and I would like more inputs. So far I've had a few people tell me I'm hypo on there.

I'm really struggling right now trying to figure out what's wrong with me. I am 26, was studying at Uni before dropping out in my final year. I eat healthy, do cardio and am on my feet for work, lift lots of weight at the gym, but its all falling apart. In late high school I started getting tired, that was in 2013 and the feeling never left, being tired is simply normal for me and I remember multiple times I would sleep over 16 hours straight. I now sleep in a blacked out, temperature controlled room with a strict bedtime.

My mental health is my worst symptom, literally everything in the world is too much effort, my memory is becoming appalling, no matter how much I sleep I am tired and it feels like that is the root cause of my issues, my mental health is declining because of my physical tiredness. I have also developed an anxiety disorder, there doesn't seem to be any pattern to it I just randomly get so anxious I hear noises in my apartment building and it sets me off.. I recently told a friend about this and he suggested looking at thyroid, turns out a few of the private blood tests I've had done over the years had some thyroid panels in there, here's all the results that had out of range/too high results:

**JAN 2022**

TSH - i.imgur.com/rnUMUQ6.png

LDL - i.imgur.com/l3PEcb9.png

ANTIBODIES (Only time they've ever been tested) - i.imgur.com/UhZpS5B.png

PROCLACTIN - i.imgur.com/CZfVX8D.png

**OCT 2022**

TSH - i.imgur.com/iYfJk5m.png

LDL - i.imgur.com/Dzs2ABq.png

PROLACTIN - i.imgur.com/244r92K.png

**JAN 2020**

TSH - i.imgur.com/RiZRbaT.png

What's going on here? I've read that most cases of Hypothyroidism is Hashimotos, which would result in high antibodies but that's not the case? I'm speaking to my doctor in 2 days and will be bringing all this up but I need more than my own perspective because doctors are too dismissive. What should I be asking my doctor? Thank you in advance, the help means a lot.

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ELLJAMO profile image
ELLJAMO
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

High TSH, high cholesterol suggests possible hypothyroidism

Thyroid antibodies negative in Jan 22

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

ELLJAMO profile image
ELLJAMO in reply to SlowDragon

Thanks for the reply. I see you recommend FT3 and FT4, I think they are there on the 2022 tests I've had or is Free T3 and T4 not the whole thing?

SlowDragon profile image
SlowDragonAdministrator in reply to ELLJAMO

TSH is higher than average in all tests

Jan 22

Ft3 slightly low

Ft4 ok

Oct 22

Levels seem to be improving

That’s now 9 months ago

Next step is to test vitamin levels

Recommend retest including thyroid levels to see if they have changed

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Anything happen around Jan 2020……

eg Covid perhaps?

ELLJAMO profile image
ELLJAMO in reply to SlowDragon

I've just checked and actually had some vitamins tested in the Jan 22 test, I've supplemented vitamins very consistently for years now and I usually take a slightly higher than recommended dose, for example vit D I take between 10,000 - 16,000IU a day through winter. Here's the vitamin results:

Folate - 6.56 ug/L (ref 3.89-19.45)

Vit B12 - 150 pmol/L (ref 37.5-188)

Vit D - 61.3 nmol/L (ref 50-200)

I got that Vit D reading even while supplementing high strength which is why I upped to 16,000.

TiggerMe profile image
TiggerMe in reply to ELLJAMO

Hi, I have a similar situation with my daughter and now her partner, I've put them both on a supplement regime ready to retest in a couple of months.

Your results show low folate and maybe an issue absorbing Vit D perhaps time to try a different approach? You can get Vit D patches or sublingual... how are your iron and ferritin levels?

tattybogle profile image
tattybogle

putting the TSH / fT3 / fT4 and antibodies here to compare more easily . is this correct dates ?

Jan 2020:

TSH 5.47 [0.27 -4.2] ...... over range

fT4 15.4 [12-22]

Jan 2022:

TSH 4.12 [0.27 -4.2] ....... just back in range but still suspiciously high

fT3 4.5 [3.1 -6.8]

fT4 18.1 [12-22]

TGab 13.8 [<115] negative, no evidence of autoimmune disease

TPOab 10.3 [<34] negative , no evidence of "

Oct 2022:

TSH 3.05 ........... still suspiciously high

fT3 4.57 [3.1 -6.8]

fT4 18.5 [12-22]

ELLJAMO profile image
ELLJAMO in reply to tattybogle

Yes, that's exactly correct.

tattybogle profile image
tattybogle in reply to ELLJAMO

..... So the TSH is a bit high ~ it's more common for healthy people to have TSH sitting around 1 or 2 ish ..anything over 3 is a little bit suspect~ anything over range is definitely suspect .

But GP's can't consider prescribing replacement thyroid hormone treatment unless TSH is over range , and stays over range on the next test ....( or, until thyroid hormones are under range).

If thyroid antibodies are positive, then doctors are more confident to start giving replacement thyroid hormone when TSH is 'not much' over range .... but TSH does still need to be over range on 2 occasions before they can offer any thyroid hormone replacement.

TSH= thyroid stimulating hormone~ is message from the pituitary to the thyroid asking it to make more thyroid hormone (T4 /T3) .

So when TSH is consistently high ,this can indicate a thyroid problem, in that it's asking the thyroid to work harder to keep up the usual levels of T4/T3 .... but so far , your thyroid hormones T4/T3 are being kept at 'ok' levels .

and because your antibodies are negative, there is no evidence of any cause for your thyroid to be struggling, or any reason for expecting thyroid function to be getting worse over time (negative antibodies is not a 100% guarantee that you don't have autoimmune thyroid disease though, because in research a few people have been found with autoimmune thyroid damage to their thyroid without ever finding raised antibodies)

i would suggest you get another TSH / fT4 / fT3 in a few months , see if TSH is higher again or if its going back to lower levels .

Ideally always test TSH at 9 am . and without having breakfast first . just water ~ TSH is higher in the morning and falls to it's lowest around 1-3pm ,and breakfast can lower it too..... so having tests at same time of day ensures you can compare TSH results properly

Hope some of that explanation is useful.

ELLJAMO profile image
ELLJAMO in reply to tattybogle

Thanks so much for the explanation. On your note of blood draw timing, I've just looked through the timing that these bloods were taken, the 3.05 TSH reading was taken at 11:30am and the 4.12 TSH was at 3pm..

TorcHouse profile image
TorcHouse

As an aside - what's your iron result/s from your GP? Is the B12 from the GP, too? If so it will be a Serum test, not the Active test you'd get from, say, Medichecks. Just because your B12 is high in range doesn't mean your body is using it. Where's the corresponding Folate result?

And that Vit-D result is very low, but having that enormous amount as supplements is asking for trouble if not tied to Vit-K2mk7 and a decent magnesium.

I've come to realise my body isn't taking enough nutrients from my food. With swollen nodules on my thyroid I am definitely Hashimoto's, but my TSH, T4, T3 have never been 'out of range', though my Vit-D was in the 40s. My best first step was eating 6 Brazil nuts a day, for the Selenium as I was/am a poor T4 to T3 converter.

There is no simple answer here, only people's experiences. My suggestion is to go onto the Medichecks.com site, not to buy but to *read* the information in drop-down menus under "Biomarkers" and see if any of your jigsaw puzzle pieces nudge into place. You need to be armed with questions for your GP because, alas, it is appalling how little they know.

ELLJAMO profile image
ELLJAMO in reply to TorcHouse

I'm speaking to GP today and will be following up about having access to my test results as my more recent tests have been with them not Medichecks, I've already asked 3 times and written to them asking for access to results and no response yet. Although I'm sure they do the most basic blood panel possible so not entirely sure what's been tested.

I do supplement K2mk7 yes. I take Vit D, K2, magnesium, zinc, Vit B complex, fish oil and I've done many trial runs of different supplements over the years but nothing stood out helping my symptoms.

I'm currently being put through for ADHD assessment, as cognitively those are my symptoms, but with a 3-5 year waitlist I'm looking at every other possible cause. Maybe it is ADHD, but I don't know how else to say it other than I have a gut feeling something isn't right in my body physically.

TorcHouse profile image
TorcHouse in reply to ELLJAMO

I agree with you about that last point. Sounds to me like they're trying to off-load you onto a long waiting list under a label so they they have an excuse not to do anything.

Regards "nothing stood out", it's not often any one thing does. We are a complex mechanism and once out of balance it takes a great deal of reading up and trial & error, not helped by the fact that vitamins take around one month to kick in and minerals three months.

As to printed test results, I had to physically face down the Receptionist for mine to be printed; even then she had to "ask the Doctor" as they do. Do not leave until you get a time *the next day* you can collect them, or ensure your email is logged. Surgery staff have a lot of sh*t to put up with, but squared shoulders, a steely eye and a quiet but firm voice as you emphasise it is "my legal right", can work wonders.

Best of luck.

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