low tsh but still hypothyroid

[Clairey2503]

hi I keep getting bloods every 6-8 weeks from my doctor as my tsh level is constantly below 0.01…. I am on 75mcg of levo one night and then 100mcg of levo the next as told by my doctor. But I’m still having all the symptoms still of being underactive. When I was on 100-120mcg daily I felt so much better but my doctor will not increase due to my tsh level. I have put on nearly 2 stone since then dropped me to 75/100 and feel terrible and don’t feel my symptoms are being listened too. Any help advice be much appreciated xx

[Jaydee1507 Administrator]

2 years ago you had a very good reply from SlowDragon highlighting your very low, even deficient vitamin levels as an issue. healthunlocked.com/thyroidu...

Has anything been done to address these or have you had repeat tests and begun supplements?

With low vitamin levels we cannot use our thyroid hormone properly.

[TiggerMe Ambassador]

Have they ever actually tested your fT3 & 4 levels?

[SlowDragon Administrator]

Just testing TSH is completely inadequate

You need full thyroid and vitamin testing

Low vitamin levels tend to lower TSH due to poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Low Ft3 results in even lower vitamin levels

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 and last dose levothyroxine 24 hours before 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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

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/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

Come back with new post once you get results

Members can advise on next steps

What vitamin supplements are you currently taking

[Clairey2503 in reply to SlowDragon]

hi sorry for leaking longer to reply it’s been up and down lately and I just really feel I’m not been listened to by my doctors….

My tsh came back <0.01 and due to this they wanted to reduce me again from the 75/100mcg saying I was overactive… I explained again I don’t have any overactive symptoms all the symptoms I have is underactive.

I take my vitamin d as prescribed and self medicate with b12 and magnesium and they said my vitamins level were good.

My thyroid peroxidase antibodies were 155 iu/ml range is 0-34….

My free t4 was 14.2 range was 10-22

My weight gain since my last post has went up another 7lbs… even though I eat fruit, fibre and quite frankly I don’t eat much as I constantly feel bloated and full of water. All my weight is on my belly and upper back, my legs are thin and so is my arms it’s all on the front.

I have a cold intolerance, hair loss, brown/red marks on my neck all the time like an underlying mark, increased thirst, brittle nails with indents and lifting up…

I got put onto furosemide as my water retention is quite bad, hands, face and ankles. I’m on 20mcg and they can’t put me on a higher dose as honestly I’m constantly peeing…

I make sure I’m active I work full time I have an autistic daughter, a dog, single parent so I don’t actually stop and my Apple Watch rings are constantly exceeded?

I feel like the doctors just don’t listen to me or where am I going wrong?

[SlowDragon Administrator in reply to Clairey2503]

My free t4 was 14.2 range was 10-22

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

is this how you did your test

Free T4 (fT4) 14.2 pmol/L (10 - 22) 

Ft4 only 35.0% through range

if tested as recommended……you’re most likely UNDER treated

You are legally entitled to actual results

they said my vitamins level were good.

what are actual results

your high thyroid antibodies confirms autoimmune thyroid disease

Have you had coeliac blood test

Are you on strictly gluten free and/or dairy free diet

furosemide as my water retention is quite bad, hands, face and ankles. I’m on 20mcg

Are you taking this at least 2 hours away from levothyroxine

[Clairey2503 in reply to SlowDragon]

They never tell me to take my tests in the morning.

Wouldn’t give me my vitamin level results it was like I was asking them to hand over secret documents! Just said they were normal range!

Never had or mentioned a coeliac test.

I’m not on a gluten or dairy feeder but I do monitor what I’m eating.

No doctor has ever told me to take my furosemide with my levo…! I take my levo with my furosemide before I leave for work…

God you guys are soo good!!!! So much more information than the doctors! Xxxx

[SlowDragon Administrator in reply to Clairey2503]

So first step

1) Start taking levothyroxine correctly

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Retest thyroid levels 6-8 weeks later

2 get copies of all recent tests

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Come back with new post on forum once you get results

Vitamins within range is not necessarily optimal

Looking for vitamin D at least over 80nmol minimum

Serum B12 over 500

Ferritin over 70

Folate towards top of range

many (most?) Hashimoto’s patients need to supplement vitamin D, magnesium and vitamin B complex continuously

Some also need separate B12 initially too

Many need to work hard to maintain good ferritin levels

3) Request Coeliac blood test via GP

or buy online-£20

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[Clairey2503 in reply to SlowDragon]

hi sorry I sent for a medichecks test and just got the results back, will post them below, medichecks states I’m on too low a dose, started taking my levo in the morning, also instead of the 75/100 mix I am just taking the 100 and then my other tablets later and I’ve actually lost 6/7lbs so far can’t believe it!!! And I feel so much better!thanks so much for your help as I’ve gotten from information from yourselves than my own doctor! Xxx

Results

[SlowDragon Administrator in reply to Clairey2503]

Retest again 6-8 weeks after being on 100mcg daily and now taking Levothyroxine correctly

you may need further increase after this

Approximately how much do you weigh in kilo

[Clairey2503 in reply to SlowDragon]

79kg I used to be 65/67kg before they changed me down to 75mcg…😢

[SlowDragon Administrator in reply to Clairey2503]

So guidelines by weight

67kg = 107.2mcg per day

Total of 750mcg per week

So hardly surprising weight went up after dose reduction ….especially as you were not taking levothyroxine correctly

79kg = 126.4mcg per day

What were blood test results that caused GP to reduce dose levothyroxine

NEVER ever agree to dose reduction based just on TSH.

Always get FULL thyroid and vitamin testing

Testing early morning, before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

All four vitamins need to be optimal

Never take any medications or supplements within 2 hours

Some like calcium, iron, magnesium, vitamin D tablets, HRT, PPI must all be at least 4 hours away from levothyroxine