I’ve been on T3 only for absolutely ages (several years). It brought my levels up from below range to top of range, and all in all I was feeling pretty good. T4 was always mid-range before taking T3, with a T4/T3 ratio of 13:1, so I figured conversion was the issue.
Then, I had a weird test 7-8 months ago where T3 was WAY over, although I had no hyper symptoms. Nonetheless I reduced the dose and life went on.
Therein lies the problem as I didn’t re-test when I should have.
All was well until last week when I started feeling very unwell, to the point I had to make a docs appointment for the first time in several years. Heavy chest pain and exhaustion. Feeling panicky I decided to come off T3.
At doctors I was diagnosed with stage 2 hypertension. (Ordinarily BP is low). Cue many tests, including TSH and T4. When those came back, TSH was top of range, T4 way below (no surprise).
I had also had medichecks thyroid ultra vit. This showed I could improve on B12 and vit D. Unsurprisingly it also showed crashed T3 and T4 (both below range) with TSH over-range at 8.
So.. I’m now in a quandary. I already know I know more than the GP about all this, based on conversation to date. I haven’t fessed up to taking T3 either. Can of worms, that.
I suspect, with hindsight, that the high BP was nothing to do with the T3 as I had had no other symptoms, plus a VERY stressful 18 months preceded by a close family bereavement. There is also hypertension on my dad’s side of the family.
I know I just can’t go back to how I was feeling before T3. I literally couldn’t get out of bed or remember simple things, never mind run two businesses as I currently do.
I’m wondering if simplest course of action is to let everything settle, have a rest, re-test everything and start over?
Any thoughts gratefully received...
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You can't always pick it up on a blood test. Antibodies fluctuate all the time. And, some people never even have high antibodies when they have Hashi's. Have you had an ultrasound of your thyroid?
Well, we know people can have Hashi's without high antibodies because it's picked up when they have an ultrasound. The damage to the thyroid is visible.
Would suspect you do have Hashimoto's.....in part because of family connections but also looking at previous posts....you found going grain free has helped...that suggests Hashimoto's
Have you tested BOTH TPO and TG thyroid antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Suggest you start back on Levothyroxine....always the same brand
Perhaps at 50mcg....or higher if you can manage it
Work on improving low vitamin levels too
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many people need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
likely you were never on high enough dose of Levothyroxine if FT4 was only 14
Frequently on just Levothyroxine FT4 needs to be right at top of range - typically at least 19-20.....sometimes higher
If, once you get on high enough dose of Levothyroxine to bring TSH under one, FT4 at top of range and all four vitamins optimal......if at that point FT3 remains low .....then look at adding small dose of T3
Bloods should be retested 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/
. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many
Thank you! Lots of info to think through. At the moment, medichecks ultravit last week shows v low antibodies on both and low/mid range on B12 and VitD. Folate being retested due to sample error..
Before you started self-treating your fT3 was 1.3 (1.6~3.1) which looks like ng/L, so I've converted it to 2 pmol/L (2.46~4.76). When fT3 is low, non-thyroidal illness should be suspected.
Thyrotoxicosis due to emotional stress is perfectly possible, with chest pain, hypertension and left ventricular hypertrophy. Not all hyperthyroid signs and symptoms need appear, and they can lag behind out of range test results. Try and get an echocardiogram of your heart arranged.
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Worried
Maybe a "how long is a piece of string" question, but how much of the T4 in levothyroxine is converted into T3?
Sudden change in fT4 levels
Low TSH stopping me getting HRT
Anxious re AZ vaccinne appt Sat,as v undermedicated,will this be a problem, anyone the same?
