Subacute thyroidosis

[Sheba14]

Hi everyone, I would like to find other people who have suffered subacute thyroidosis, my life has not been the same since I got it 3 years ago, it's so rare I've never met anyone else who's had it or even knows what it is. So ye I'd really like to talk with you guys, I'm at the end of my tether.

[SlowDragon Administrator]

Welcome to the forum

Do you have any recent thyroid and vitamin results you can add

Are you based in U.K.?

are you currently on any replacement thyroid hormones or vitamin supplements

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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 (Hashimoto’s or Ord’s thyroiditis)

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 on here that all thyroid blood tests early morning, ideally just before 9am

(and last dose levothyroxine 24 hours before test if on levothyroxine)

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

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...

[Sheba14 in reply to SlowDragon]

I started out with hyperthyroidism with goiter, tremor, sweats, restless leg, neck and facial pain, after a Couple of months I turned hypo, it's supposed to be a self limiting desease, my thyroid is now smaller than a normal thyroid which is normal for subacute thyroidosis. I'm in ireland and my doctor refused to test me anymore than every six months. I started twitching all over all the time it's never stopped in the 3 years, my endo dropped me like a ton of bricks once this happened, I'm also weak and fatigued All the time. I'm had brain scans 3 emg all clear apart from minute hyperintensities of the white matter which I didn't have before. They only tested my tsh which is 3.7,im on 25mg eltroxin a day. My b12 is normal, my ferritin is 10 low, haematocrit is low and rdw is my, I've had a low sodium for some reason. My blood pressure can go very low but at times it goes highish. Have an ana of 80 with speckled nucleolar pattern. Long story! , sorry, hope I'm making some sense.

[Jazzw in reply to Sheba14]

You’re making perfect sense—I’m not surprised you’re feeling awful though. You look to be substantially undermedicated. 25mcg levothyroxine is only ever a starter dosage for someone who’s become hypothyroid—it’s nowhere near enough for someone who’s now got full blown hypothyroidism (which I think you have). You probably don’t need me to tell you you’ve been horribly let down by your doctors.

First step—I think I’d go back to my family doctor and ask to try a dose increase to 50mcg. The chances are 50mcg won’t be enough either but you‘ve been left undermedicated so long it’s probably best not to rush. The reason your ferritin levels are so low is because hypothyroidism reduces stomach acid which means you won’t be absorbing sufficient nutrients from your food intake. Your blood pressure issues are also probably due to being undermedicated for hypothyroidism.

And 10 is terribly low for a ferritin result. I’m going to take a wild guess that even if your B12 is “normal” it might well be low in range. Do you have a result for it?

Poor you—it’s just not good enough that doctors seem to know so little about how to treat hypothyroidism.

[SlowDragon Administrator in reply to Sheba14]

They only tested my tsh which is 3.7,im on 25mg eltroxin a day. My b12 is normal, my ferritin is 10 low, haematocrit is low and rdw is my, I've had a low sodium for some reason. 

Good grief

You’re incredibly under medicated

On levothyroxine TSH should ALWAYS Be below 2

Most people when adequately treated will have TSH around or under one. Most important results are always Ft3 followed by Ft4. Looking for Ft3 at least 50-60% through range

Autoimmune thyroid disease also called Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

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.

Sounds like you have Ord’s thyroiditis where thyroid shrinks and shrivels up

Standard starter dose of levothyroxine is 50mcg (unless over 60 years old or heart condition)

Request 25mcg dose increase in levothyroxine and bloods should be retested in 6-8 weeks

You will need several further increases in levothyroxine over coming months

Approx how much do you weigh in kilo

Guidelines on EVENTUAL dose levothyroxine required is approx 1.6mcg levothyroxine per kilo per day

Which brand of levothyroxine are you currently taking

Don’t change brand when increasing dose

Only change one thing at a time

Many people find different brands of levothyroxine are not interchangeable

Request thyroid antibodies tested for autoimmune thyroid disease if not been tested yet

Also you need coeliac blood test done

[SlowDragon Administrator in reply to Sheba14]

Low vitamin levels

Low vitamins are a direct result of being hypothyroid

ESSENTIAL to correct low vitamin levels at same time as levothyroxine needs OPTIMAL vitamin levels to work well

Also low vitamin levels tend to lower TSH

Ferritin is deficient

See GP for full iron panel test for anaemia

You will almost certainly need iron supplements…..likely 2 or 3 per day …..possibly even iron infusion

Any iron supplements must be minimum 4 hours away from levothyroxine

Please add B12, folate and vitamin D results and ranges

Optimal vitamin levels are

Vitamin D at least over 80nmol (40ng/mL)

Serum B12 at least over 500

Active B12 over 70

Folate and ferritin at least half way through range

Ideally ferritin at least 100

[SlowDragon Administrator in reply to Sheba14]

Levothyroxine doesn’t top up failing thyroid….it replaces it

Essential to be on high enough dose

But we frequently need to increase dose slowly

Especially if like you , been left hypothyroid for far, far too long and vitamin levels have absolutely crashed

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Sheba14 in reply to SlowDragon]

Thank you, I never understood any of this before.

[SlowDragon Administrator in reply to Sheba14]

Get GP to increase dose levothyroxine to 50mcg

First week or so you might initially want to take 25mcg and 50mcg alternate days to increase slowly as your ferritin is so terrible

Before increasing to 50mcg daily.

If you feel a bit “wired” initially on increased dose ….try splitting levothyroxine as 25mcg waking and 25mcg afternoon or bedtime

Ferritin deficient

Are you vegetarian or vegan

Or have heavy periods

while waiting for GP to prescribe iron supplements, look at increasing iron rich foods in your 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

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

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.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

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 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[Jazzw]

Welcome Sheba14

I’m going to stick my neck out and say it isn’t rare—it’s just rarely diagnosed accurately. And if you’ve had it 3 years, it’s probably no longer subacute thyroiditis (which is generally a temporary condition), it’s probably now full blown hypothyroidism (or possibly hyperthyroidism. Or a bit of both, courtesy of a condition known as Hashimoto’s Disease).

But without blood test results we’ll be guessing. What thyroid function tests have you had done? When were you last tested? Are you on any treatment?