I was struggling remaining at 50mcg with symptoms of fatigue, constipation and brain fog returning. Multiple clinicians refused a dose increase. I self sourced more levo and cut the 50mcg tablets in half. I titrated upwards slowly. I did 6 weeks of 75mcg/50mcg alternate days. I felt a little bit better but not great. I then moved up to 6 weeks of 75mcg.
After about 3 or 4 weeks at 75mcg, I felt absolutely amazing. I woke up naturally without an alarm after about 8 hours of sleep feeling refreshed (for years I have been 10 hours of sleep and still feeling like I have been hit by a bus when alarm goes off). My need for afternoon naps completely disappeared. I had the energy to exercise. Going to the toilet once a day which is a dream come true for me as it used to be twice a week. Brain fog began to lift and my work became easier. My husband commented that I was more sprightly.
I then tested my blood with Thriva (taken under optimal conditions stated on this forum). So this was 6 weeks at 75/50 alternate days and then another 6 weeks at 75 daily:
TSH = 0.03 (0.27-4.2)
FT3 = 5.0 (3.1-6.8)
FT4 = 21.4 (12-22)
Vit D = 59 (75-175) This has always been low, I am working on it with the mouth spray
Active B12 = 75 (37-188)
Ferritin = 86 (13-150)
Folate = 31 (8.83-60.8)
So my FT4 is almost at the top of the range, my TSH is now very under range and my FT3 has never budged upwards of 5.
As we know, FT4 high in range or over range is bad for long term cancer outlook. Under range TSH is ok but only 0.04 and above whereas mine is 0.03.
I then experimented with dropping back down to 75/50 alternate days for 6 weeks and then I was going to do bloods. I am four weeks in and not sure I can take it any more. All the symptoms have come back: 10 hours sleep plus an afternoon nap needed, brain fog, no energy, wanting to avoid social interaction.
How do I move forwards with this knowing that 75mcg alleviates my symptoms but that my blood work is showing it is not good for me long term? And if I go back to 75mcg what do I do come the yearly blood test when the GP will freak out my TSH is 0.03? ("be firm" hasn't helped - I quoted NICE guidelines and was told I was wrong)
I was not expecting that little 25mcg to have quite such an effect!
PS I am 75 kilos.
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lauraleeds666
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Thanks. I'll do this. How many hours would you say that I need clear before I take the bedtime tablet after dinner? I'm a night owl so I work late, eat late and go to bed late. Just need to make sure I'm getting full absorption of the levo. Might help with cutting out midnight snacking!
Vitamins = the Vitamin D BetterYou +K2 oral spray. I took this religiously every day over winter and improved my Vit D from low 50s to mid 70s. I then was a bit slack with it over summer as I was in Croatia for a fortnight and then out and about in the sun in the UK over summer. The level has dropped back to 50s
I take L-lysine 1500mg most days and ad hoc Propolis tincture.
I need to work on the B12 and also incorporate Magnesium but not sure where to start but have some time at the end of the month to properly research this.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
As we know, FT4 high in range or over range is bad for long term cancer outlook. Under range TSH is ok but only 0.04 and above whereas mine is 0.03.
Do you think this is set in stone? I don't. There may be risks for some people in some circumstances but I don't believe it's universal or inevitable.
I have been on Levo since 1975. Since around 1995 I've been keeping a record of my results which show continual suppressed TSH and over range FT4. I was still symptomatic, my GP kept increasing my dose of Levo.
Between 1995 and 1999 my best results were
TSH: 0.02 ( 0.27-4.20) with FT4: 24.1 (11.8-24.6 - 96.09% through range)
and at worst:
TSH: <0.02 (0.27-4.20) with FT4: 26.9 (11.8-24.6 - 117.97% of range)
I then tried private doctors who tried me on NDT, T3, and a combination of both, it never worked for me.
Went back to GP and back on Levo only from 2002 and same old story of increasing Levo until at worst my results in 2013 were
TSH: suppressed with FT4: 34 (11.8-24.6 - 173.44% of range).
Gave up with GP in 2015 and did my own thing and found my problem was poor conversion and poor nutrient levels. Sorted the nutrient levels, added T3 to less Levo and now my FT4 and FT3 are usually no more than 70% through range but TSH is always <0.01, <0.02, <0.005 or 0.005 depending on which lab does the test.
I am 74, I don't have cancer, I don't have atrial fibrilation, I don't have osteoporosis. I accept that these things can happen to anyone and plenty of people who don't have hypothyroidism and don't take Levo do suffer from these conditions.
I could have had remained on Levo and tried to get TSH back into range (which is probably impossible after so many years) and led a miserable existence, needing at least naps during the day or at worst being bedbound. I chose to live as best a life that's possible for me.
I have absolutely no worries about my suppressed TSH and I keep my FT4 and FT3 nicely in range around 60-70% and this suits me.
I know what you mean about everyone is different but the big Scottish study led by Leese followed over 16,000 people and showed that TSH of 0.03 or lower was significantly associated with AFib, heart disease and osteoporosis. I think I just need to give 75mcg some more time to bed in as SlowDragon has suggested.
My tsh has been 0.01 for about 10 years and I have none of the things that you mentioned. I was sent for a dexa scan and the lumber part was off a little (can’t think how else to describe it) but I had done damage there and had an operation. The rest of me was 100% ok. Jo xx
As we know, FT4 high in range or over range is bad for long term cancer outlook.
No, we don't know that. Not for certain. And, in any case, it's a risk, not a certainty. If you smoke you risk lung cancer, but not all smokers die of lung cancers. Whereas, if you walk under a bus, you pretty certain to die. High in-range FT4 is just one of life's little risk - there are many of them.
In any case, it would only be a difference of a couple of years. Is it worth living a miserable life just to extend it by a couple of years? We need to get these things into perspective. You're not a brilliant converter, so unless you can reduce the levo and replace it with a little T3, you have to weigh up the pros and the cons.
Under range TSH is ok but only 0.04 and above whereas mine is 0.03.
0.01 is totally irrelevant. All these numbers are arbitary, not set in stone. My TSH has been 0 for many years, yet I'm still here! lol It really isn't worth worrying about.
I completely agree that life has risks and we are constantly weighing them up. But the cancer risk isn't the choice between living to 85 undermedicated or living to 90 sprightly and dying of cancer. High FT4 has been associated with a much higher risk of solid site tumours, most specifically brain, pancreas and breast. The first two have survival rates of less than 10-15%. Just not something I'm willing to invite if at all possible. You're right and I'll try not to worry but it's difficult for me as I am an overthinker.
I wondered if my conversion was off. How do I add T3? I have no idea how to go about this at all. NHS GP won't entertain it will they?
GPs cannot initiate the prescription for T3. You need to see a T3-friendly endo. Ask on here if anyone has any recommendations in your area - it is possible. Answers by PM only.
Or, buy your own, on-line, and self-treat with it. Same proceedure: ask on here for PMs giving links to trusted sources.
The cancer study showed that people with hyperthyroidism were at a greater risk of cancer, not people who are 'over' medicated for hypothyroidism.
Hellevik et al. conducted a prospective population based study of 26,691 people without a previously diagnosed thyroid disease (153). Baseline TSH levels were measured and 9 years of follow up of cancer incidence was recorded. Compared to euthyroid reference group, increased cancer risk (HR 1.34) was associated with low TSH levels (<0.5 mU/l), a risk driven by lung cancer (HR 2.34) and prostate cancer (HR 4.99). In another population based cohort study, 17,034 patients with newly diagnosed hyperthyroidism were matched with 34,066 patients without hyperthyroidism. Over a 4 year follow up period, patients with hyperthyroidism were at higher overall risk of cancer (Adjusted HR 1.2, p < 0.05) and thyroid cancer (Adjusted HR 6.8, p < 0.05), with extended duration of hyperthyroidism associated with greater risk of thyroid cancer (195). The Rotterdam study prospectively included 10,318 patients with baseline measurements for free T4 and TSH, followed for a median of 10.4 years. Higher free T4 levels were associated with higher risk of solid cancers (HR 1.42 per unit increase in free T4), lung cancer (HR 2.33), and breast cancer (HR 1.77), although no association were found for TSH levels (126). (excerpt from Thyroid Hormones and Cancer: A Comprehensive Review of Preclinical and Clinical Studies
Eilon Krashin, Agnieszka Piekiełko-Witkowska, Martin Ellis, and Osnat Ashur-Fabian)
The people with higher natural levels of T4 can't necessarily be compared with people who have high replaced levels of FT4. For starters, people with higher natural levels of T4 are presumably more likely to suffer from and be treated for Graves disease. I wonder how many of them ended up having RAI treatment?
Perhaps the study shows that high natural levels of T4 could be used as an early marker for Thyroid cancer. The link to lung cancer could reflect the smoking habits of the participants, since it is known that when people quit smoking their thyroid hormone levels often fall. All in all the study prompts more questions than answers.
It's unlikely we will ever see truly representative comparative studies of people who are 'slightly overmedicated' compared with people who are not. It would be an ethical minefield!
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