I have been trying to convince my GP to increase my levo dosage from 100 mcg daily to 125 mcg. My GP referred to an NHS consultant endocrinologist who told me current endocrine society guidelines are to keep TSH within normal reference range (0.3-4.8).
The Endo said a suppressed TSH is associated with increased risk of osteoporosis and AF, which he said is well known and established.
He warned suppressing TSH makes a patient feel better, but I have to be aware of the risk of osteoporosis and AF.
My previous TSH 5 months ago was 2.42 and my latest TSH test result is 1.25 ml/UL on 100 mcg levo daily. My GP would only test FT4 which was 10. 2 pool/L (range 7.7-20.6) - I am back to arguing for a full thyroid test or paying for it privately, which I did last time.
To date, I cannot persuade them to increase my levo. Overseas I just asked for additional prescription. But in UK, they won’t give it to you, not even for cash.
I would be grateful for any comments on the above.
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Adam10
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The Endo said a suppressed TSH is associated with increased risk of osteoporosis and AF, which he said is well known and established.
Ask for evidence, links to studies.
You can also quote the article written by Dr Toft, leading endocrinologist and past president of the British Thyroid Foundation, who wrote the following in Pulse magazine, the professional publication for doctors :
“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/l.
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.**”
**He also mentioned in a recent talk that this applies to Free T3 as well as Total T3.
You can send for a copy of the article by emailing ThyroidUK :
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
Fine, so the endo advises GP to "keep TSH with range "... but how the B***** H*** does the GP know what your TSH will go to on 125mcg ? It might not go below range ...in which case what's the problem .
I could understand all the fuss if your TSH was already as low as 0.5 on 100mcg , but it's well above that.
Ask GP to TRIAL an increase for 6 /8 weeks and then retest to see what TSH is, rather than deny you the chance to even try it .
Even if a below range TSH is a risk for x,y ,and z .. ( which is 'debatable' ) .. these risk are long term things... there are not going to cause you any harm in just a few weeks while he tries it out to see where your TSH goes.
Honestly .. this is like having your dad saying " you're not allowed to drive your car because you might crash it"
I had to fight to get an increased dose of levothyroxone , but my system was struggling so badly my Gp agreed, so I went from 100 mcg , to 125 mcg which made me a bit shaky, so I cut them in half and rake 112 mcg .But my osteoarthritis is progressing..
So I have to accept good with the bad. It’s about working things out for you yourself. If you can get prescribed that is x
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.
My TSH is totally suppressed 0.005 and was 0.01 for some 15/20 years before. My TSH reading seemed to disappear when they changed labs!! My endo was worried and sent me for a bone scan. No osteoporosis. I did have a 7 month bought of AF a couople if years ago but it has not returned. I started including more magnesium in my diet and the AF disappeared abrubtly! I was told by a nurse that calcium and magnesium have an effect on heartrate. I also understand, although there may be a lot of thyroxine in the blood, there is no way of knowing how it is absorbed the cells, except by asking patients how they feel. That is just my personal experience of suppressed TSH,
These papers could help you. Both are very recent. The first (2021) is for combination therapy. The second (2017) is quoted by the first and is about T4 Mono therapy. The second paper relates to total thyroidectomy, but if you have very low thyroid function from the hashimotos (I checked your other posts), then it's possible you are coming from a similar starting point. The key quote is below.
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Hi Adam, how about suggesting a small dose increase at first instead of the full 25mcg, e.g. alternating 100/125? With a TSH of 1.25, there's most likely room for a small dose increase before your TSH is suppressed!
Hi Adam, you might be interested in this article from the ThyroidUK website. It is about the "7 myths of Hypothyroidism" one of which is "The myth that a suppressed TSH leads to Osteoporosis". The others are worth looking at too.
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