Hypothyroidism with normal TSH

[Emstar1892]

Hi everyone,

I was wondering whether you'd be able to offer some insight into my situation, so i thought i'd post my whole, long *apologies!* story for full context.

I'm 26, and have had hypothyroid symptoms for many, many years. As a child, i suffered perstsient constipation, allergies, fatigue and bradycardia. As I grew older I complained of increasing exhaustion, insomnia, hair thinning, dry skin, nail breakage, swollen lymph nodes, etc etc. My TSH was always 1.8-2.9 depending on the day/time.

Last year, I tested my frees, and my ft3 and ft4 were both at the bottom/slightly below the reference ranges depending on the day/time.

I now have an enlarged heart and a pulse of 48, and can barely work, but my doctors are refusing to say it's a thyroid issue. One even said the frees are 'dangerous, unreliable' tests to get.

I saw a consultant endo last year who did a TRH stimulation test. It came back as a slow tsh rise after 60 minutes, then a large rise 60 minutes later. My endo said it could be indicative of hypothalmic dysfunction, but that it 'probably wasn't that.' He then dismissed me. For some reason, the test knackered me (possibly by pushing my adrenals).

I ordered 25mcg of levo online, and trialled it for a month. I gradually got more cold and tired, then in the final week, I upped my dosage to 50. I then experienced 2 days of feeling extremely hyper (racing heart, panic sweating), before totally crashing. Yet my labs were still low. My tsh had dropped to 0.87. My brain was foggy as hell and i ended up in a&e feeling like i was dying. And i feel pretty awful on a daily basis - so this was extreme.

I'm pretty sure i crashed my adrenals (precipitated a crisis) by my levo experiment. Sure, 25mcgs isnt much at all, but for someone whose endocrine system has been set to hypothyroid all these years, maybe my system just couldn't take it?

Now i'm wondering where to go from here. I've exhausted my funds on private tests and consultants. My NHS GP has concluded that I have Chronic Fatigue, and that my enlarged heart (and high cholesterol/decreasing ferritin) is an anomalous phenomenon. But i feel that if i don't act, i'll struggle to go on much longer. My health is rapidly declining.

I'm wondering whether to take Thorne Adrenal Cortex with 12.5mcg of levo, then review after a month. My thinking is that the levo will be low enough not to make me feel hyper as I adjust, and that the adrenal cortex will help me avoid another crash if it pushes my system.

For reference, I don't have addisons. My AM serum cortisol is in range, and 24-hour salivary is normal, low, high, high. Thyroid antibodies also normal.

Thanks for any insight you can offer.

[Clutter]

Welcome to the forum, Emstar1892.

Can you post the results and ranges of the thyroid function tests you've had?

Your doctors are very ignorant. TSH is a pituitary hormone and the Free T4 and T3 are the thyroid hormones. If they are low/below range and TSH has not risen over range then secondary/central hypothyroidism due to pituitary or hypothalmic dysfunction is likely.

[Emstar1892 in reply to Clutter]

Hi Clutter,

Yes, sure!

TSH is 1.9 (although smoking suppresses it. When I stop it climbs to around 2.8-3.0).

FT4 is 10.3 (12.0-22.0)

FT3 is 3.1 (3.0-6.8)

[Clutter in reply to Emstar1892]

Emstar1982,

FT4 is below range and FT3 is bottom of range so you are hypothyroid. Low-normal TSH does indicate secondary/central hypothyroidism. Treatment is Levothyroxine to raise FT4 into the upper range and FT3 to mid-range or higher.

Your NHS GP should be aware that high cholesterol is a symptom of low thyroid hormone and should refer you to endocrinology for proper investigation in case sex and growth hormones are also deficient. In the meantime your GP should prescribe Levothyroxine. As you may have heart dysfunction dose should be initiated at 25mcg and titrated 4 weekly in 25mcg increments until FT4 is mid-range. See NICE CKS summary and prescribing information in cks.nice.org.uk/hypothyroid...

Low thyroid hormone can also cause bradycardia. Have you seen a cardiologist about the enlarged heart?

The endocrinologist you saw last year should have followed up on pituitary or hypothalmic dysfunction.

[SlowDragon Administrator]

What about thyroid antibodies. Have these been tested

Also vitamin D, folate, ferritin and B12

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get thyroid antibodies and vitamin testing from GP.

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Ask for referral as your "2nd opioion" to a pituitary specialist. You need to do your homework on who you want to see

[Emstar1892 in reply to SlowDragon]

Hi SlowDragon,

Thanks for your reply. Yep I mentioned thyroid antibodies but probably easy to miss given the essay I posted!

Antibodies are fine, it's not hashis. All other markers are fine too, (Vit D, b12 etc). Only thing decreasing is ferritin, which doesn't change even if I go crazy on the iron supplements for a couple of months - I just get sick.

Thanks for the other things you posted, too. But after 25 years and hundreds (literally) of doctors and specialists, I'm kind of on my own here. That's why I was suggesting trying levo and adrenal cortex, to see if that might be a possible self-medication route. I know self-medication is a scary, dangerous thing to do, but I'm a lot more worried about doing nothing!

[Clutter in reply to Emstar1892]

Emstar1892,

Have you had cortisol blood tests or saliva tests to indicate whether you have abnormal cortisol?

If you've been hypothyroid a long time Levothyroxine patient information leaflets suggest that patients may need cortisol checked first as low cortisol and Levothyroxine might precipitate an adrenal crisis. I don't think this is likely when introducing 25 - 50mcg which are low doses but it may be why you experienced adverse effects when you tried to increase dose to 50mcg.

[marigold22 in reply to SlowDragon]

SlowDragon Do you think Emstar1892 could have a conversion problem?

[SlowDragon Administrator in reply to marigold22]

The fact Emstar1892 says smoking is suppressing TSH suggests Hashimoto's as possible cause

Not everyone with Hashimoto's has high antibodies. Apparently 20% never get high antibodies

DIO2 gene test might reveal a problem

Other suggestions are pituitary problem, whiplash, trauma to head, haemorrhage during/after giving birth. (Sheehan's syndrome) All these can damage pituitary

Long term undiagnosed thyroid can upset HPA axis

Need a pituitary specialist

[falling2peices]

I know my problome isn’t shown in my TSH either it’s normal I belive it’s my T3 I’ll pull my tests and post it

[shaws in reply to falling2peices]

Put your results in a new post as it may be lost amongst the responses on this one.

[Joesmum]

Emstar 1892,

I have central hypothyroidism and your results are suggesting that you may have a hypothalamic/ pituitary issue.

I have a very, very good endo on the NHS who I’m sure would have spotted this in you.

Could you PM me please.