I've had hypothyroid symptoms for the last three years - low body temps (35.8c upon waking, rising to 36.2c by mid-afternoon), low pulse (50 bpm), flaking skin, feeling cold all the time, brain fog, constipation, depression, etc. I've had numerous labs run during this time and they've all shown the same pattern, with slightly elevated TSH, but normal fT3/4. Here was my most recent set of non-medicated blood tests:
TSH: 5.7 (0.3 – 4.2) miu/l
fT3: 5.3 (3.1 – 6.8) pmol/l
fT4: 14.2 (12 – 22) pmol/l
B12: 674 (220 - 700) ng/l
Folate: 11.3 (2.6 - 17.3) ug/l
Ferritin: 140 (23 - 530) ug/l
Vitamin D: 135 (50 – 175) nmol/L
Testosterone: 12.2 (8 – 28) nmol/l
Prolactin: 89 (86 – 324) mU/L
FSH: 1.4 (1.5 – 12.4) IU/L
LH: 3 (1.7 – 8.6) IU/L
I finally decided to pursue treatment, but unfortunately, things went very, very poorly. I started on 1/4 grain of armour thyroid and after a couple of days I noticed an immense build-up of pressure behind my eyes, as well as exophthalmos; after a week, I started to develop vision loss, intraocular hypertension and thousands of eye floaters, so I ceased treatment. I had labs pulled just before I stopped the medication (four hours after taking it) to see what was happening since these symptoms are typical of hyperthyroidism / graves' thyroid eye disease, but to my surprise, they were relatively normal:
Since the labs didn't indicate hyperthyrodism, I thought perhaps I was having an autoimmune reaction to the pig thyroid of NDT, so I tried again with synthetics. However, the exact same thing happened, only this time I lost a significant amount of vision, my sclera turned blue and I developed numerous glaucoma-like symptoms - halos around light, starbursts, pain when looking at bright light, etc, which still haven't gone away; my eye exams at the emergency room were all normal.
Does anybody know why this is happening? I have all the symptoms of hypothyroidism, my TSH has been slightly above range for the last two years, but I can't take medication. Any input or opinions would be greatly appreciated. Thanks in advance, Paul.
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PaulAshton
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There’s almost 2 million people in U.K. on levothyroxine. Roughly 80% manage fine on levothyroxine....provided they are prescribed a high enough dose
Standard starter dose of levothyroxine is 50mcg and dos3 increases upwards as fast as tolerated
But more modern guidelines suggest starting at higher doses
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A quarter grain of NDT contains so little thyroid hormone (9.5mcg T4, 2.25mcg T3), I think it’s possible that what you experienced was coincidental—not least because of the time frame in which you started to experience symptoms. T4 takes weeks to build up in your body—it would have taken at least a week to feel the effects of 5mcg of T4. And the T3 dosage was so tiny, it seems unlikely it would have the effects you describe.
While your thyroid does appear to be struggling (TSH is elevated), at the moment it does seem to be providing you with a decent amount of T4 and T3. You most likely have a condition known as Hashimoto’s thyroiditis (autoimmune thyroiditis) which will eventually cause your thyroid to fail but you’re possibly not at the point where you need to take thyroid replacement hormones.
The vision effects you describe sound a lot like migraine with aura (migraines don’t always cause pain—they can present with the weirdest flashing and visual effects). migrainetrust.org/about-mig...
I’d put the idea of being overmedicated with thyroid hormone right out of your head—that’s close to impossible taking a quarter grain of NDT.
What made you start taking NDT? Are you in the U.K.? Do you (like so many of us) have a GP who just isn’t listening to you? Or was it prescribed for you?
Thank you for your informative reply - I greatly appreciate it!
A quarter grain of NDT contains so little thyroid hormone (9.5mcg T4, 2.25mcg T3), I think it’s possible that what you experienced was coincidental—not least because of the time frame in which you started to experience symptoms.
I did consider that, but the 1/4 grain also increased my body temperature from 36.2c to 37.1c, so it was definitely doing something. I've tracked my temp everyday for the last year and it's never once gone above 36.5c. I do agree that something else may also be going on though, because as you say, it's an extremely small dose.
You most likely have a condition known as Hashimoto’s thyroiditis (autoimmune thyroiditis) which will eventually cause your thyroid to fail but you’re possibly not at the point where you need to take thyroid replacement hormones.
My hashimoto's antibodies were all negative. Sorry, I should have included this in my original post - please accept my apologies. I've never tested Graves' antibodies though.
The vision effects you describe sound a lot like migraine with aura (migraines don’t always cause pain—they can present with the weirdest flashing and visual effects). migrainetrust.org/about-mig...
That's extremely interesting, thank you. Do you know if it can cause intraocular hypertention, too? My pressure was in the high 30s at the hospital, so if this causes that as well then it makes a lot of sense given my eye exams were normal.
What made you start taking NDT? Are you in the U.K.? Do you (like so many of us) have a GP who just isn’t listening to you? Or was it prescribed for you?
Yep, I'm in the UK. The GP told me that I was fine, that my symptoms were 'psychosomatic', and that I should start sertraline because I was just depressed - the same story I'm sure you've all experienced. When I asked about the elevated TSH they said that it was subclinical which doesn't cause symptoms. Since I was self-treating I decided to use armour since NDT seems to produce the best results empirically, though I know that current guidelines don't recommend it.
There is a link between thyroid hormone and eye pressure and studies if you wished to google it. Other members have complained of eye pressure and I had some myself when first medicating but not to your extent.
Your TSH levels are not wholly reflective of your thyroid hormone levels because although FT4 is only 22% through range, FT3 is nearly 60%, and this could be because elevated TSH is accelerating T3 conversion, so reducing T4 levels. Most members with untreated hypothyroidism would have a low FT3 level.
This could suggest pituitary resistance when the pituitary gland doesn't recognise thyroid hormone levels and there becomes a problem in the feedback loop as continued TSH is secreted. Or another reason is the presence of a pituitary adenoma just leaking enough to alter good function of the HPT axis. Has no one questioned these results before?
I'm with SlowDragon in suggesting Levothyroxine might be more tolerated as doesn't contain any T3, but given your previous experience I would suggest only a very low dose, maybe 25mcg. This would hopefully suppress some of that TSH and raise FT4 levels more in line with FT3 but not enough to have loads more converted (by elevated TSH) which might risk taking FT3 too high. Then you could test after six weeks and make adjustments accordingly.
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