In 2019, I was diagnosed with Hashimoto and Pernicious Anemia. My B12 status is good now (way over the rooftop, I am self-injecting every other day to keep symptoms at bay. I will try to decrease that frequency once my thyroid issue is under control, but that's another construction site).
My lab findings before I changed my PCP/GP were
TSH: 0,857 mU/l (0,270 - 4,200)
fT3: 3,1 pg/ml (2,0 - 4,4)
fT4 12,5 pg/ml (9,3 -17,0)
Erroneously, I took the thyroxine that morning I went for a blood test at the new PCP/GP and so it was no surprise that the TSH went up:
0,21 mU/l (0,30 - 4,00)
fT3 and ft4 was not tested. Nonetheless, she decided to reduce the dose from 100 µg to 75 µg.
If I had known better, I would have insisted not to reduce my dose that drastically, or at least to make another test which include ft3 and fT4.
But by that time I didn't know it better and so many things began to run downhill, and I began to increase my dose again.
That works only in little steps by upping 12.5 µg per week or fortnightly (to avoid a hypertension). I can feel improvements, but they don't last for long, and I have to start with the next higher dose. Many symptoms disappeared (like muscle weakness, tingling in arms and hands, bad sleep, anxiety, reduced libido, etc.), but some of them still bother me (paresthesia in the 2 outer little toes of both feet, swollen eyelid on one side, limited energy).
Lab results (different lab than with the previous PCP/GP):
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January (525 µg/week):
TSH 12,53 mU/l (0,30 - 4,00)
I got a phone call from my doc, "your thyroid is going crazy. Please come, so we can talk about it".
---
March (625 µg/week):
TSH 3,33 mU/l (0,38 - 5,33) ==> Why the hack did the lab changed the reference values?
fT3 4,45 pmol/l (3,62 - 7,26)
fT4 9,51 pmol/l (8,20 - 16,98)
---
May (675 µg/week):
TSH 3,57 pmol/l (0,38 - 5,33)
fT3 4,28 pmol/l (3,62 - 7,26)
fT4 8,72 pmol/l (8,20 - 16,98)
Thankfully, my doc is very nice, open-minded and listening, and I can try out new doses on my own a little bit. She is a GP/PCP, no endocrinologist, but I assume she is now aware of the necessity that at least all three hormones should be tested before a decision regarding the right dosage is made.
My weekly dose is now 725 µg which is more than I took before that stupid decrease. It feels as if this is still not enough (see symptoms in paragraph above). Is it possible that more damage has been made because of that drastic reducing from 100 to 75, and so I need more thyroxine than before that?
The next blood draw will be in 2 weeks.
I would love to hear your thoughts and hints, dear community.
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Lunario
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Important to regularly retest vitamin D, folate, ferritin
What vitamin supplements are you currently taking apart from B12 injections
Presumably you have Hashimoto’s? Autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?
ALWAYS test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Have you had coeliac blood test done yet?
If not get one while still eating high levels gluten
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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
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
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.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Thanks for all this information and your reading tip. I already read one of Isabella Wentz' book, very interesting, indeed. A test for celiac might be a good idea. But the main issue is the lack of thyroxine, I think because I felt a lot better with a lower TSH.
fT3: 3,1 pg/ml (2,0 - 4,4) Approx 46% of the way through the range
fT4 12,5 pg/ml (9,3 -17,0) Approx 42% of the way through the range
Erroneously, I took the thyroxine that morning I went for a blood test at the new PCP/GP and so it was no surprise that the TSH went up:
0,21 mU/l (0,30 - 4,00)
fT3 and ft4 was not tested. Nonetheless, she decided to reduce the dose from 100 µg to 75 µg.
Comments on the above :
TSH doesn't change within hours of taking thyroid hormones. It can take days or weeks or months, and in some people with hyperthyroidism (which you definitely don't have) a long-term low TSH caused by being hyperthyroid can make TSH stay low permanently.
Your first TSH result is roughly four times higher than the second TSH result. Not only that, but the TSH is well within range in the first result. The second TSH result is below range but is not dramatically low, and in no way does it indicate you were over-medicated.
Your doctor was totally wrong to reduce your Levothyroxine by 25%. It didn't need reducing at all. The reduction in your Levo is responsible for your TSH rising
TSH does have a circadian rhythm - so time of day that a blood sample was taken will affect the result. This is why it is always recommended on this forum to have TSH tested no later than 9am.
By taking Levothyroxine before a test you will have raised your Free T4, not your TSH.
Free T3 has a similar rhythm to TSH, but is roughly 90 minutes behind in terms of reaching it's highest and lowest point when compared to TSH.
...
Why the hack did the lab changed the reference values?
Labs all have their own reference ranges - they have different testing machines, different protocols, different populations of patients that they deal with - all of these can affect the reference ranges. The way to deal with this, so that you can compare one result with another when reference ranges are different, is to calculate the percentage of the way through the range.
TSH 3,33 mU/l (0,38 - 5,33) Approx 60% of the way through the range
In real life though, TSH ranges tend to be fairly similar to each other, so people on this forum don't bother calculating percentages for TSH. They can look at a TSH of over 3 and will know that this is a level at which people are hypothyroid. If the person is being treated for hypothyroidism then they are clearly under-treated. An ideal TSH level for many of us to feel well is around 1 or under. But if people feel fine with a result between 1 and 2, then that's fine too. Feeling well with a result of 3+ would be rare I think.
March (625 µg/week):
TSH 3,33 mU/l (0,38 - 5,33) ==> Why the hack did the lab changed the reference values?
fT3 4,45 pmol/l (3,62 - 7,26) 23% of the way through the range
fT4 9,51 pmol/l (8,20 - 16,98) 15% of the way through the range
---
May (675 µg/week):
TSH 3,57 pmol/l (0,38 - 5,33)
fT3 4,28 pmol/l (3,62 - 7,26) 18% of the way through the range
fT4 8,72 pmol/l (8,20 - 16,98) 6% of the way through the range
...
The body will desperately do all it can to convert T4 (the storage thyroid hormone) to T3 (the active thyroid hormone) when levels are low. This shows in the results above - in the second set of results the T4 is less through the range than the T3 when compared to the previous results. Your body is desperately trying to convert what it can to T3 but is failing because you simply don't have enough T4 to convert - in fact you have hardly any.
...
Is it possible that more damage has been made because of that drastic reducing from 100 to 75, and so I need more thyroxine than before that?
It is possible. When people with Hashi's are adequately medicated their thyroid will actually do very little because the thyroid hormone required is being provided with pills. To achieve this the TSH needs to be kept low.
But your dose was lowered, so your (sick) thyroid had to work harder and this may have kicked off damage being done. Under normal circumstances a Hashi's attack would normally raise thyroid hormone levels as a result of the destruction of thyroid cells by the immune system. But clearly your thyroid is too damaged to even do this.
Other possibilities...
Have you changed your brand of Levo? You might not be absorbing your current make very well. A change of dose could well mean you are on a different make.
Have you started taking any more medications for any reason, or changed brands of these? E.g. statins, antacids, PPIs, blood pressure meds, or any other medication?
Hhave you increased your supplements, have you changed the timing of any of your meds, hormones or supplements?
That's a lot to digest but it's good to read your answer, humanbean (funny nickname, by the way). It's kinda confirmation of what I suspected.
To answer your questions:
I did not change the brand. Once I noticed another brand on a prescription, but I immediately demanded the one I am used to.
No other medication or PPI's, no increase in supplements.
For how long should I go with 725µg/week before I try the next higher dose?
On Monday, the 5th, I have an appointment for another blood draw. It surely won't reflect my last increase, but I don't care if I have to go for the following blood draw sooner. What matters is my well-being, in my opinion.
There should be 6 - 8 weeks between a change in dose and a re-test. Doing the re-testing earlier could backfire on you if you act on results before your body has fully adjusted to a change in dose.
I agree totally that your well-being is more important than test results. But test results are a help in deciding whether to leave dose the same or make changes.
Of course, you are right. I am a bit uncertain if an increase from 712/week to 725/week can make a significant difference with these lab results and symptoms.
My current schema since 4 weeks is
Mo, Tue 100µg
Wed 112,5µg (1,5 75µg pills)
Thu, Fri 100µg
Sat 112,5µg
Sun 100µg
1 to 3 days after I took the higher dose, I feel better, so I wonder if I should take 112,5 on Monday too. One more week until the next blood draw, and I begin to lose patience.
Because I have autoimmune gastritis, my gastric acid level is low. Would it help to absorb the thyroxine better if I add vitamin C to the water that I drink together with the pill?
I am a bit uncertain if an increase from 712/week to 725/week can make a significant difference with these lab results and symptoms.
You're right, it might make little difference. But if you are getting very close to optimal it might make the difference between being not quite there and everything being perfect. But it is your decision.
Because I have autoimmune gastritis, my gastric acid level is low. Would it help to absorb the thyroxine better if I add vitamin C to the water that I drink together with the pill?
There have been papers that suggest taking vitamin C with T4 can actually help the body to convert T4 to T3. This is the link I have on the subject - and it looks perfect for you - there may be others.
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