high TSH when unwell

[Catalpa]

I got a routine blood test a couple of weeks ago when I was feeling a bit 'off'. Same day went down with a temperature, sore throat etc. When my bloods came back TSH was 9.6 (range 0,5 - 4.2) and T4 was 11.6 (range 12 -22). Could it be the illness that made my levels so high? GP wants to increase my levo dose but I am wondering if it was off because I was ill.

[greygoose]

Having a virus will have a certain effect, but not necessarily on the FT4. And yours is very low - far more important than the TSH, which can be affected by so many things. So, I think you probably do need an increase in dose.

However, how long was the gap between your last dose of levo and the blood draw?

[Catalpa in reply to greygoose]

About 12 hours. I took it previous evening and blood draw in the the morning.

[greygoose in reply to Catalpa]

Goodness! You really do need an increase in dose then. It should actually be a gap of 24 hours, so you have a false 'high' result there, and your FT4 is actually lower than that. So that is why your TSH is so high.

[Catalpa in reply to greygoose]

Yes. Don't understand why things have deteriorated so much. I am really struggling to get over this 'bug' and wonder if that is related to low thyroid as I normally rarely get winter illnesses.

[greygoose in reply to Catalpa]

Having a virus will probably affect conversion of T4 to T3, so that may make your TSH rise a little - but not to that extent. And certainly wouldn't cause FT4 to drop like that in someone taking levo.

So, either your needs for thyroid hormone have increased or you have Hashi's and more of the gland has been destroyed. Difficult to say with thyroid.

[SlowDragon Ambassador]

How much levothyroxine are you currently taking

How long on this dose

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you taking

when were vitamin D, folate, ferritin and B12 last tested

On levothyroxine TSH should always be under 2

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)

[Catalpa in reply to SlowDragon]

I'm on 125mcg for about 2 years. Previous blood TSH only was 3.75in November 2023. Take folate and vitamin D but no vitamins tested for about 5 years although I did have low haemoglobin last year which resulted in a celiac test (negative) and no further action. GPs only test TSH and maybe T4. Most recent test was 8.20am.

[SlowDragon Ambassador in reply to Catalpa]

Previous blood TSH only was 3.75in November 2023.

So dose should have been increased after test results in November

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

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

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

Which brand of Levo were you taking for 125mcg

Do you always take on 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

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)

As 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

[SlowDragon Ambassador in reply to Catalpa]

I did have low haemoglobin last year

So what was prescribed for low iron

Full iron panel should be retested to see where iron levels are now

Are you vegetarian or vegan

Pre or post menopause

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

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/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

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.

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

[Catalpa in reply to SlowDragon]

Thank you. Lots of information there. I wasn't prescribed anything for the low haemoglobin. Just told to retest in a few months so I bought my own iron supplement and the next test was in range so that was that. I am post menopause and eat an omnivore diet including red meat but maybe not enough. I take HRT transdermally so I'm guessing that won't affect absorption of Levo. GPs in the UK are not great with thyroid as I am sure you are aware. I was told TSH of 3.75 was fine. I have done a medichecks in the past so thinking it might be worth repeating as well the gluten free diet. I have dairy but only goats milk and cheese - is that bad too or only cows?

My hair is very fine and receding at the front. I am always cold. I've just been and bought a half kilo of lambs liver. Thanks again.

[SlowDragon Ambassador in reply to Catalpa]

Push for increase in Levo

I you have residual hypothyroid symptoms dose should be increased

Specialist thyroid endocrinologists will frequently tell GP to ensure TSH be around or below 1

Most important results are always Ft3 and Ft4 and GOOD vitamin levels

It’s a vicious circle when on inadequate dose levothyroxine

Low stomach acid leads to poor nutrient absorption and low vitamin levels as direct result

Low vitamin levels tend to lower TSH, especially low iron/ferritin

Yes about 80% with Hashimoto’s find strictly gluten free diet helps and roughly 50% find dairy free helps

Dairy from cows that is

Apparently sheep and goat milk and cheese have different enzymes. I find I can tolerate real halloumi (read the labels, some also contain cows milk)

If your dairy free, you are likely to benefit from lactose free Levo

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Or get from specialist pharmacy

thyroiduk.org/get-support/t...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

[SlowDragon Ambassador]

presumably your hypothyroidism is autoimmune?

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

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)

Essential to test vitamin D, folate, ferritin and B12 at least annually

Test privately if GP won’t

Autoimmune disease and gluten intolerance

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

As your coeliac test is negative you can now trial strictly gluten free diet 

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...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...