I am wondering if anyone here has had their L-Thyroxine increased at the weekend only? When I had my annual thyroid bood test last year a new GP saw it and got concerned, as they always do, about my non detectable TSH. I also take liothyronine and my TSH has been undetectable for years in spite of lowering my doses of both T4 and T3 over the years.
This GP wanted me to try to lower T4 again as I had just lowered my T3 dose without it affecting TSH. I did lower it and although my TSH has just beome detectable both my T4 and T3 were below the reference range and I was getting some symptoms of low thyroid although it did not affect my energy levels.
She then suggested that I increase my T4 to 50 mcg at the weekends only and continue with my usual dose of 25mcg during the week. This seems a rather odd way of addressing the problem to me. Anyone else on a regime like this?
I am being referred to see an endocrinologist next month although they have written to one previously for advice. As a result of that I had tests for a single serum cortisol, serum oestradiol, serum LH and prolactin which were all in the normal range.
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BonsaiKid
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When taking T3 it is normal for TSH to be suppressed/below range and doctors just do not understand this. You are likely very under replaced if your TSH is within range.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception..
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
The cheapest test currently available is from Randox Heath which includes antibodies if you're OK with finger prick tests. randoxhealth.com/at-home/Th...
Yes, I was told by a doctor I saw privately in London some years ago that taking T3 would suppress my TSH. I keep telling them this but they still seem to want it to be detectable.
On a private test done last May my Ferritin was 160.0 ug/L , Serum Folate was >19.8 ug/L , Active B12 was >150 pmol/L, and Vitamin D3 was 119 nmol/L .
I take sublingual methylcobalamin and adenosylcobalamin and previously I was taking one that also contained L-methylfolate so that is why the blood test showed high levels.
The copy of the latest thyroid hormone test in Feb will not upload as it's a pdf. I will have to see if I can make a jpeg copy. I am due another on 24th April to see what the higher dose of T4 at the W/E has done.
Doctors do get very twitchy about an undetectable/low TSH. The fact is it isn't an issue but they believe due to a certain study done years ago that it can cause bone loss and heart problems which isn't true.
If your TSH has been undetectable for years it can take a very long time to recover to normal range, if it ever does.
Quote them the NICE guidelines that are only recommendations and NOT mandatory. You can also take responsibility for your suppressed TSH knowing the 'risks'
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
I was taking 20 mcg T3 and 50 mcg L-Thyroxine. I was able to put on weight which I badly needed after my GP recommended that I reduced the T3 to 10 mcg. I had tried to reduce it on a previous occasion but felt fatigued when I did. I felt fine on this reduction. I took the l-thyroxine at 7am on the morning of the test which was at 10 am as she asked me to do, but my last dose of T3 was the evening before at 6pm. Will be interesting to see what the Endocrinologist has to say next month.
Protocol recommended here: Test at 9am, fasting, last levo dose 24hrs before the blood draw (if you’re taking Levo), last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
So even taking levo a few hours before the test you're still under range. You need to stop listening to your GP I'm afraid.
I hope your Endo is a bit more switched on! Good luck.
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
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.
It’s very common on levothyroxine plus T3 for TSH to be suppressed at 0.01
Most important results are always Ft3 followed by Ft4.
Amazingly enough I do not feel bad but I do have some symptoms of low thyroid such as my Raynaud's is much worse. I am getting dead and white fingers in the house which I have never had happen before. I don't get the urge to go to the loo after breakfast like I did before. I've also lost control of my bladder ( leaking when I am out walking) which I have not had before. I have read that this can be due to hypothyroid. 😪
I also take liothyronine and my TSH has been undetectable for years in spite of lowering my doses of both T4 and T3 over the years.
If your TSH has been suppressed for years, then there's the possibility that it will never rise significantly again, no matter how much you reduce your dose, becauset the HPT axis has been down-graded. So, you would be making yourself ill for nothing. This is something that doctors seem incapable of grasping.
Alternate daily dosing is a common way of fine tuning Levo dose by smaller increments than 25mcg tablets allow .
it can be done because Levo has a long half life (7 days) .. so the level evens out in the blood.
eg.
(1 day 50) + (6 days 25) = 200mcg /week = 28.57mcg /day
(2 days 50) + (5 days 25) = 225mcg / week = 32.14mcg /day
(3 days 50) + (4 days 25) = 250mcg/week = 35.7mcg /day
(4 days 50) + (3 days 25) = 275mcg/week = 39.28mcg /day
(5 days 50) + (2 days 25) = 300mcg/week = 42.85mcg /day
(6 days 50) + (1 day 25) = 325mcg/week = 46.42mcg /day
Some people don't notice any difference how they feel between the days with larger / smaller doses , but some do.
best practice is really to space the higher /lower days out as evenly as possible so you don't have 2 days together on higher/lower dose ... but GP's will often say weekends because they think it's easiest for people to remember .
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