My story is a bit old and I struggle with this for 1.5+ years but I decided to ask, just in case.
1.5+ years ago I started to get tired after walking 4+km. My mother has Hashimoto so I went to a doctor and tested my TSH - it was 6.
I was prescribed levothyroxine 50mcg. I started to get a bit worse almost immediately (no progression). After 1-2 months I was prescribed 75mcg. Again got worse (no progression). I decided that I can't convert T4 to T3 so I switched to T3. After a few months very very careful dosing (with no effect) I decided to get a double dose (not full dose just the increment) - the same night I got really really weak. After a while, I decided that my problem is "muscle weakness".
I stopped all hormones months ago without getting better. In the photo are my latest tests.
Any ideas what is broken?
Thank you for your time.
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75mcg levothyroxine is only one step up from starter dose
Many people need to try different brands of levothyroxine to find one that suits best
EXTREMELY common to feel (temporarily) better when levothyroxine is stopped
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Bloods should be retested 6-8 weeks after each dose increase (or brand change) in levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Even if we 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 on 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 small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Someone posted this article the other day and I find it answers how low metabolism affects muscles. It certainly has proven to be very true from the newer research.
I’m sure that Dr Lowe was right; I had very low T3 for years and my muscles have not recovered a tenth of their strength even though I take high doses of T3. I used to feel physically invincible and could pick up cwt bags of grain without any problem.
I’m sure that people who see me trying, and failing, to get up off my knees think that I’m rather odd as my face Is unlined and I look 15 years younger than my age but my body is 15 years older; the two don’t match. I’d swap them round if I could as being able to function physically is far more important to me.
I understand completely. There may be a name for that; caudus equinus. In a little research on it there was an mri on a patient that showed the lower spine muscles had literally turned to mush.
Hi Heloise , Great picture . This article is so very permanent for me at this time. Having had some muscle pain this summer. Raising my T3 levels a bit and magnesium with some quercetin for inflammation was a tremendous help. Now with Autom here some of us need to tweak our thyroid meds once again for the colder weather.
Thank you, H. I shouldn't take credit for that article. It may have come from Shaws as she had used many comments from Dr. Lowe. Such a shame he died young from a fall. T3 was a big help for me but I feel the T4 for six years really was injurious. Do you look at your blood tests to determine an increase or just know when you need it? Thyroid hormone for muscles is essential and so is magnesium.
Thank You Heloise . I was dosed by lab results only for many years after my TT. It was with high doses of T4 only . I don't have to tell you that not only it didn't work for me . It caused me many symptoms E:g. palpitations high BP , fatty liver, weight issues , sweating,insomnia, anxiety, panic attaches, etc.I found a Dr who's beliefs are dosing by symptoms over lab. I do run labs too . But go by symptoms mainly. Symptoms are very telling since it's cellular . Labs are a snap shots of the moment the labs where done. This works much better for me now. Journaling my symptoms are very helpful for me.
I can't recall what Dr. Lowe's dose was now. I knew of him before he died and kept his thoughts in mind. Dr. Ray Peat is another ground breaker on hormones. But I think Dr. Lowe took well over 100 mcgs. of T3. I wouldn't think we should try that without supervision. There is also the Wilson (I think) protocol and you ramp up T3 on a temporary basis.
I feel if a patient has been treated with T4 only with no improvement, the deterioration can last.
That IS a high dose although there is a question of resistance to T3. I wish I had the answer myself as that particular symptom was my issue as well. I posted Dr. Kharrazian's video on the Brain and I'm wondering if that is also involved with signaling to the muscles.
75mcg is not a huge dose! Maybe you needed an increase, the labs above indicate that you have plenty room to increase your levo
Likewise your TSH is much too high indicating low hormones/ an increase needed.
Ideally TSH should be 1 or even lower. TSH is a pituitary hormone, not a thyroid hormone . Medics don't seem to understand this......after diagnosis TSH has little value, the important readings are FT4 and FT3, particularly FT3. It is impossible to correctly evaluate thyroid function without the frees.
Not the medics fault, they are badly educated on thyroid matters and left to work with one hand tied behind their backs!
When thyroid hormone levels are too low the pituitary sends a signal (TSH) to the thyroid to produce more hormone...in turn the TSH will lower as the thyroid levels increase. TSH has then done its job!
But it's not always so straightforward!
Conversion needs to be good.
What made you decide that you are not converting....low FT3 or a Dio2 thyroid genetic test or a hunch?
Shorthand check is low FT3 with high FT4
In order to ensure maximum conversion, vit D, vit B12, folate and ferritin all need to be optimal
Have you had antibodies tested to check for Hashimoto's?
What was your maximum dose of T3?
Before making any changes you need to have a full thyroid and vitamin test along with antibodies.
Your T4 and T3 blood levels are too low. Your TSH is too high, it should be around 1.00. You are under medicated. Have you had your adrenals checked. You do this by checking your cortisol levels. You can get a 9am blood test on the NHS or better still a private saliva test done privately through Regenerus Laboratories or Medichecks, this measures your cortisol 3 times a day throughout the circadian curve which is much more accurate.
I use to get weak on Levothyroxine after exercise of any type even walking my dogs. I’m a poor converter confirmed by a positive DIO2 gene test through Regenerus Laboratories and blood tests. This effected my whole body and low cortisol played a big part.
I’d check your DIO2 gene and your cortisol before increasing any thyroxine. Then make the increase when you have the full picture.
The DIO2 faulty gene can effect your skeletal muscles. I had a terrible time collapsing but not fainting. It was lack of energy from too low T3 conversion. Now I take T3 twice a day at the right dose for me and the change has been incredible. I know you said you tried T3 but how much did you take and how often for how long.
You could do with checking B12,D, folate and ferritin too to ensure they are all high in the range, low in the range is no good. We need them high for good conversion T4 to T3.
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