Help with possible diagnosis?: Hi everyone, I'm... - Thyroid UK

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Help with possible diagnosis?

Anon230
Anon230

Hi everyone,

I'm new here, I'm a 23 y/o female. I have been suffering from symptoms since 2017. My mum, maternal gran and paternal aunt all have hashimoto's.

I have been to my GP several times since 2018 trying to get a diagnosis but I keep getting told that "it might take five years to find out what's wrong, eat better and exercise, psychological worries can turn into physiological symptoms" etc. etc. I'm at a bit of a loss on what to do. I haven't been to my GP for a while now because I get made to feel that I am being a pest and I was told that I feel the way I feel because I am depressed and work as a secretary (I don't believe I'm depressed).

Anyway, my first TSH level was 3.9 I then got a blood count a year later and my results were:

TSH: 4.12

T3: 2.2

T4:14.7

ESR: 23

Total protein: 92

I have really bad fatigue, when I walk it feels like I'm wading, my skin is dry, my hair is thinning and takes longer to grow and my memory/thinking isn't the same. I have went up three dress sizes since my symptoms began but I would rather have my other symptoms resolved first. My joints have weakened and I cannot wear high heels anymore. I'm only 23 and have been feeling like this since I was 20, I feel like I'm missing out on some of the best years of my life and I'm stuck in a 90 year old's body. When I went to one particular doctor all she did was go on about my weight (size 14/16) and made me feel really ashamed of myself. I overhauled my diet/exercise when my symptoms first began because I thought that it was due to not eating well but it hasn't made any difference. I have also given up gluten for a while to see if that would help, but no.

I'm basically just wondering if anyone has been through anything similar with fighting to get a diagnosis, have any tips or even if you have an idea of it being something else entirely? My mum says my symptoms are so similar to hers. I truly am not trying to self-diagnose, I'm just exasperated and so exhausted from both my symptoms and being told that my illness is "in my head."

Thank you :)

12 Replies
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SlowDragon
SlowDragonAdministrator

Welcome to the forum

It’s highly likely you have Hashimoto’s

GP should be testing thyroid antibodies and vitamins too

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

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

Have you had vitamins tested?

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)

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Anon230
Anon230 in reply to SlowDragon

Thank you for your reply! I have checked my notes and can see results for these apart from Vit D:

B12: 341 (200-883)

ferritin: 41 (13-150)

folate: 6.4 (3.1-20)

SlowDragon
SlowDragonAdministrator in reply to Anon230

When were these last tested

B12 and folate are low

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/vitamins/vit...

Nanaedake
Nanaedake in reply to Anon230

Do get your vitamin D level tested and post the result with the range here. Low vit D can cause muscle joint weakness, joint pain and general tiredness. If that is not low then pursue a reason for your symptoms but keep an open mind that they may not be a direct result of thyroid disease. Other factors can affect thyroid function so you need to look at all angles. But don't be fobbed off with the depression suggestion, just keep going back to doctor until you get some answers and find a solution.

ESR is slightly over range so could give a clue.

SlowDragon
SlowDragonAdministrator in reply to Anon230

Ferritin is on low side too

What’s your diet like

Are you vegetarian or vegan?

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Never supplement iron without doing full iron panel test for anaemia

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

SlowDragon
SlowDragonAdministrator

TSH: 4.12

T3: 2.2

T4:14.7

ESR: 23

Total protein: 92

Please add ranges (figures in brackets after each result) on these results

Anon230
Anon230 in reply to SlowDragon

TSH: 4.12 (0.46-5)

T3: 2.2 (0.9 -2.5)

T4:14.7 (9.9 -20.7)

ESR: 23 (1-20)

Total protein: 92 (64-83)

SlowDragon
SlowDragonAdministrator in reply to Anon230

So nothing is out of range (yet)

Was this test done early morning?

Next step is to get vitamin levels tested

SlowDragon
SlowDragonAdministrator

So you need thyroid antibodies and vitamin D tested

Testing vitamin D

Nhs postal kit £29

vitamindtest.org.uk

Or

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk

Come back with new post once you get vitamin D and thyroid antibodies results

"it might take five years to find out what's wrong, eat better and exercise, psychological worries can turn into physiological symptoms"

Run away from this doctor and find another one. The one you've seen won't make you well. It's as if he's thrown in the towel on finding out what is wrong with you before he even got started. Your high in range TSH would get you diagnosed and treated for hypothyroidism almost anywhere in the world except the UK where thyroid treatment is extremely sadistic.

If you do ever see him again, ask him for published research showing that psychological worries can turn into physiological symptoms in people with thyroid disease (or any other health problem for that matter). He won't be able to come up with anything - he's talking nonsense.

T3: 2.2 (0.9 -2.5) 81% of the way through the range

T4:14.7 (9.9 -20.7) 44% of the way through the range

I'm rather dubious of your T3 result. The reference range makes me think it is a Total T3 result. If I'm right it isn't useful. The useful result for T3 is Free T3.

I've read that Scotland often makes use of the Total T3 test rather than the Free T3 test. It is often used in the US as well, as far as I know.

Most of the T3 in the body is bound to proteins that help move it around the body. For the body's cells to make use of T3 the proteins it is bound to must be separated off.

Free T3 measures just the T3 which is NOT bound to proteins and which is therefore usable by the cells of the body.

Total T3 measures both T3 bound to proteins and T3 which is unbound. Only a small proportion of the Total T3 is immediately available for use by the body, but you won't know what that proportion is.

...

In people who are hypothyroid and on replacement thyroid hormone treatment (Levothyroxine) a Free T4 just 44% of the way through the range would be rather low. Many people on the forum prefer a level which is approximately 60% - 80% of the way through the range. For Free T3 the preferred level is often around 50% - 70% of the way through the range. But these are generalisations and might not suit you - we're all different.

Preferred levels are also altered if someone takes Levo + T3, NDT, or T3 only rather than Levo only. But Levo only is always the treatment people should try first.

B12: 341 (200-883)

ferritin: 41 (13-150)

folate: 6.4 (3.1-20)

Optimal levels for B12 are one of the following :

1) Minimum of 500.

2) Top half of range i.e. 540 - 883

3) Top of range i.e. 883 (approx)

4) Around 1000.

Personally, I feel best with option 4.

Good options for B12 supplementation are methylcobalamin at 1000mcg per day for a couple of months. Available at Amazon and other supplement sites.

...

Optimal levels of folate are usually given as upper half of the range i.e. 11.5 - 20, or top of range i.e. about 20. Good options for folate supplementation are methylfolate at 1000mcg per day for a couple of months. Other info and options are given in this link :

chriskresser.com/folate-vs-...

...

As well as taking B12 and folate supplements you need to take a good quality B Complex. After taking the B12 and folate for a couple of months you might be able to drop them and just continue to supplement with the B Complex alone.

The two B Complex products mentioned on the forum quite often are :

Thorne Research Basic B, dose = 1 a day

Igennus Super B, full dose = 2 per day. After taking 2 per day for a couple of months people might drop dose to 1 per day.

Always remember that any product (such as a B Complex, but there are others) which contains biotin must be stopped for a week before testing for any test at all.

...

Ferritin - Optimal level of ferritin is usually given as mid-range or a little bit more i.e. roughly 80 - 120 or 80 - 130.

You could try raising your ferritin (iron stores) level and iron level with iron-rich food. This website is good on the subject :

dailyiron.net/

But be aware that iron is potentially dangerous and is poisonous in overdose :

healthunlocked.com/thyroidu...

You definitely need thyroid antibodies and vitamin D tested. Antibodies will tell you whether you have hashimoto’s. Low Vitamin D can pass as hashimoto’s as the symptoms are very similar. Oh and get a new GP if you can. It took me 8 yrs to be diagnosed. 5 yrs chronic muscle pain, bout of anxiety and depression, and even a 5lb full term baby. It was actually a proactive physiotherapist who got my thyroid tested. NOT my GP. hang in there and push push push! And read up so you know the facts when challenging your GP. Come back and see us soon! x

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