Advice please : I believe I have an under active... - Thyroid UK

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Advice please

qwertystar profile image
20 Replies

I believe I have an under active thyroid.

I’m new to this group.

Can I post my results? I have most of the symptoms but doctor said everything is normal. (Tested in December 2022)

I have Tiredness (fatigue).

Weight gain.

Feeling cold all the time.

Joint stiffness and muscle pain.

Constipation

Depression.

Extremely Dry skin.

Thinning hair/hair loss.

Heavy periods.

Coarse hair and skin.

Muscle weakness.

Stiff knees and fingers.

I have been to the doctors and I don’t have arthritis.

My knees are so stiff I struggle to walk.

I now have private health insurance.

Which specialist/doctor should I request to see? I’m new to all this.

This all happened after I had my baby.

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qwertystar profile image
qwertystar
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20 Replies

If I were you, I would definitely take those results to a practitioner from the Thyroid UK approved list. Your T3 is low and your T4 isn’t wonderful. Your TSH isn’t rising, which suggests maybe central hypo (if you are hypo) and that is what doctors use to diagnose hypothyroidism (because they’re idiots) so you’re unlikely to get anywhere with your GP with those results.

I personally think you’re onto something, post partum is also a time people commonly experience thyroid going haywire. Others with more information will be along shortly I am sure but this comment should help bump you up… x

qwertystar profile image
qwertystar in reply to

Ive booked for an antibody test, hopefully this will show what’s going on. The doc did agree that my tsh is low normal, but need to aim for optimal when I raised this

in reply to qwertystar

good luck xx

SlowDragon profile image
SlowDragonAdministrator

Next step, before seeing any thyroid specialist

Get FULL thyroid and vitamin testing done

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

Thyroid often goes a bit haywire after pregnancy

It may settle or it may get worse

ESSENTIAL to improve vitamin levels if low

so testing vitamin levels and thyroid antibodies is next step

Heavy periods will result in low iron/ferritin - hair loss and fatigue

Low vitamin D - joint pain

Request GP test vitamin D, folate, B12 and full iron panel test for anaemia including ferritin plus thyroid antibodies for autoimmune thyroid disease

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 (Hashimoto’s or Ord’s thyroiditis)

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

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...

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

qwertystar profile image
qwertystar in reply to SlowDragon

thank you for your detailed response. Very very helpful

Gustie88 profile image
Gustie88

Hi Qwertystar-

Sorry to hear you are feeling unwell. Great responses from don’tforgetaboutcortisol and slowdragon. If possible I would also recommend tests for adrenal function (cortisol, DHEA,etc) and maybe C reactive protein and other inflammatory markers. Your thyroid tests are slightly low, but not terrible. You need good adrenal hormones for your thyroid hormones to be utilized properly. Could also be something else other than thyroid. Wishing you good health.

PurpleNails profile image
PurpleNailsAdministrator

FT4: 15.2 pmol/l (Range 12 - 22) 32.00%

FT3: 4 pmol/l (Range 3.1 - 6.8) 24.32%

With thyroid issues doctors look at the TSH, a pituitary hormone & many doctors believe unless this it very high or over range there’s no possible problem with your thyroid,

The TSH should rise is when thyroid levels are low (it’s a signal to make the thyroid work harder) but sometimes the TSH isn’t reliable, poor nutrients can make it appear lower than it should, as do issues with the feedback loop (the pituitary or hypothalamus).  

This is referred to a central or secondary hypothyroidism as the issue is not from a primary issue with the thyroid. A blow to head may cause it for example.

Your function levels are in range but your FT4 & FT3 are very low in range.

Some might naturally have low levels as “it’s in range” but it might explain hypothyroid symptoms if this isn’t your norm.

  Unfortunately very few of us know our baseline it’s not tested until we’re unwell. 

I see you have issues with B12 & folate from previous posts - have you ever had ferritin & vitamin D tested?

 These can all often be low with thyroid issues due to low stomach acid. 

Poor nutrients contribute to symptoms. 

Firstly it might be worth testing thyroid antibodies to see if an autoimmune issue is affecting your thyroid (TPO & TG antibodies). 

Optimising nutrients & repeating thyroid function to see if levels have altered as next steps. 

If GP wont test all there are private options.  

qwertystar profile image
qwertystar in reply to PurpleNails

I’m also folate deficient. I have pernicious anaemia. My vit d is optimal as I’m taking vitamins. I also had an iron infusion as I so very deficient

PurpleNails profile image
PurpleNailsAdministrator in reply to qwertystar

Do you have recent levels ? 

If antibodies don’t indicate an issue might be worth testing other pituitary hormones, traumatic blood-loss can very rarely cause damage to pituitary. This master glands produces lots of “signalling” hormones including TSH.  

Adrenocorticotrophic hormone (ACTH): Stimulates cortisol.

Growth hormone (GH): Helps maintain your bone density, muscle mass and fat distribution.

Follicle-stimulating hormone (FSH): Stimulates estrogen production in your ovaries and causes an egg to grow every month.

Luteinizing hormone (LH): Stimulates ovulation 

Prolactin (PRL): Stimulates lactation

SlowDragon profile image
SlowDragonAdministrator in reply to qwertystar

So PA is autoimmune

Having one autoimmune disease makes others more likely

ESSENTIAL to test for Hashimoto’s by testing TPO and TG antibodies

With folate and iron deficiency too GP should have tested for coeliac disease

Have you had coeliac blood test done yet?

Any obvious reason for iron deficiency eg heavy periods or vegetarian or vegan?

How long since last iron infusion

Levels need retesting after 3-4 months

SlowDragon profile image
SlowDragonAdministrator

Do you have Pernicious Anaemia or just unexplained low B12?

qwertystar profile image
qwertystar in reply to SlowDragon

pernicious anaemia

Marz profile image
Marz in reply to qwertystar

How often do you have injections ?

Kapuna profile image
Kapuna

Where do I begin? I have many of the same symptoms but my TSH is <.02. I have been told that I am hyperthyroid but have none of the symptoms. From what I have seen, the TSH is not useful for many of us who have a genetic variant. Note my T3 and T4 levels are within normal.

Are there others in your family who have thyroid problems? My mother had (she passed away) and daughter has a thyroid problem. Obviously we all carry a gene. When my mother was in her 70s she was told she was hyperthyroid based on her TSH. They cut back her thyroxine and she ended up with hypothyroid symptoms. Sadly they never straightened out her dose and she was miserable until she died.

Please know that you are not alone. Even through your TSH says you are “normal” you know how you feel and it isn’t normal. Somehow we need the medical field to understand what is going on with us. It continues to be a fight for us to feel good! Let me know how your battle turns out. Good Luck!!’

SlowDragon profile image
SlowDragonAdministrator in reply to Kapuna

When my mother was in her 70s she was told she was hyperthyroid based on her TSH. They cut back her thyroxine and she ended up with hypothyroid symptoms. Sadly they never straightened out her dose and she was miserable until she died

This outrageous and inappropriate dosing by TSH is robbing thousands of people of decent quality of life

tattybogle profile image
tattybogle

So , your levels of fT4 @32% and fT3 @24% are the same as SOME people's 'usual/ healthy ' levels , (eg person 1 and 2 on the picture below have very similar % to you ,and are well) ...... so just because your fT4 / fT3 %'s are relatively low, that in itself does not indicate a thyroid problem.

But your symptoms do indicate a problem , and thyroid hormone levels are well known to go wonky after a baby. Sometimes only temporarily , sometimes permanently.

Your TSH also does not currently indicate any problem , but TSH can sometimes be an unreliable indicator for several reasons.

I think the first thing to do is get thyroid antibodies tested, then after a couple of months get TSH / fT4/ fT3 retested to see if anything has changed. (TSH usually lags behind changes in fT4 / fT3 levels by several weeks) and in the meantime address any vitamin deficiencies you have.

IF your 'usual' levels of fT4 / fT3 are actually more like person 8/9/10 ( 50-70%), then your current 32% and 24 % WOULD be a reason for you to be experiencing hypothyroid symptoms.

However ,if your current fT4 /fT3 level are lower than your 'usual' , then your TSH should have risen to ask your thyroid to try to make more T4/T3 ... and it hasn't.

So EITHER ~ these are your 'usual' levels of T4/T3 , there is no thyroid problem, your TSH is not asking for anymore T4/T3 because your body doesn't need higher T4/T3 than that , and your symptoms are caused by something else .

OR ~they are lower than your 'usual' levels of T4/T3 ,and are causing your symptoms, but your TSH is asleep on the job and hasn't risen to ask for more for some reason...if so , this is called central / secondary hypothyroidism and unfortunately , if that is the problem (that the TSH isn't rising) , it can't be diagnosed/ treated until your fT4 goes low enough to SHOW a problem (ie. below range or very very low in range) ,but because your fT4 is currently well within the normal range at 32%, , a doctor will not currently be able to diagnose/ treat you for a central / secondary thyroid problem ... hence the need for re-testing in a couple of months to keep any eye out for any changes.

p.s this is a longshot , but did you by any chance loose a lot of blood during the birth ? ( there is a thing called Sheehan's Syndrome when a sudden and large blood loss during birth can casue a problem with the pituitary gland , and since it is the pituitary that makes TSH.. this can result in the TSH not rising appropriately in response to lowered T4/T3 levels )

.
qwertystar profile image
qwertystar in reply to tattybogle

yes I lost a lot of blood. I had an emergency c-section, very traumatic.

SlowDragon profile image
SlowDragonAdministrator in reply to qwertystar

So Sheehan Syndrome is a possibility

yourhormones.info/endocrine...

rarediseases.info.nih.gov/d...

Insomania profile image
Insomania

My thyroid profile and symptoms are similar though I have a multinodular goitre too. Iron deficient anaemia is treated. My cortisol and DHEA is low by saliva test uk. In two years the GP can’t refer me, I’m getting more and more meds for individual symptoms. I’ve learnt from here about optimising vits and minerals and I’ve been religiously taking them daily. I’m really hoping the blood results look different when I next test as I’m going to see a private Dr shortly. I think mine was triggered by pregnancy too. Though I had my third baby at age 42, I’m perimenaupause age now though and it has muddied the waters.

Insomania profile image
Insomania in reply to Insomania

uk is a typo, the saliva test was with regenerus labs

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