I have been taking my Levothyroxine now for three years but every time I get tested it gives a new result. Low or high. Six months ago my doctor phoned me up to say my result was over the top of the range again and doubled my dose. I felt better but after two/ three months I started to put on lots of weight rapidly. I’m usually 7 stone but weight increase was so quick that I developed stretch marks and felt thick layers of fat all over my body. Also body temp went up with sweaty armpits hair went greasy etc. Felt hungry for first time and didn’t feel full up either. Felt sugar taste in my mouth and heart palpitations. I then halved my dose but rapidly felt very unwell and very cold, pain levels increased, fatigue, no energy and a hoard of other symptoms. So I then decided a month ago to double the dose again but divide the dose 12 hours apart. I think this has helped me. My question to you all is this. I have a blood test tomorrow morning so ‘ Do I take my dose tonight???’ I’m assuming I don’t take it in the morning either. Can anybody advise me please???
Thank you
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Always advised here is to leave 24 hours after last dose of Levo. So if you took your Levo this morning you could just leave off tonight's dose and do the test tomorrow morning. What difference that will make as you split your dose of Levo I don't know because most people take it all in one dose so they'd have the full dose 24 hours before the test. The 24 hour gap doesn't have to be to the exact minute so an extra hour or so less wouldn't hurt.
The only other thing you can do is cancel tomorrow's blood test and rearrange it so that you take your full dose 24 hours before the new test.
I asked your advise about splitting my dose of T4 to twice a day and I feel much better for doing that and my sleeping is a little better at night. I’m not awake after one hour of sleep and feeling’wired’,anxious with heart palpitations. My body feels more relaxed but I still wake up four to six times to pass urine but manage to eventually fall asleep. This is a massive improvement for me.
The reason I’m writing now is that I’ve had my results back and wondered if you can analyse why my results differ each time?? TSH range (0.27-4.2). T4 (12-22). T3 (3.10-6.80)
I’ve never had a full thyroid range of tests. Can you place some light on these results as I have to speak to mr endocrinologist next week . Also my Creatinine levels are over range and have been for years but increasing to now 94 (45-84). I also have no Testosterone <0.09 ( 0.10-1.42)
I asked your advise about splitting my dose of T4 to twice a day and I feel much better for doing that
I don't want to split hairs but just to be clear you didn't ask my advice about splitting the dose, your original post said "So I then decided a month ago to double the dose again but divide the dose 12 hours apart. I think this has helped me." and then you asked me about timing of the blood test.
So with all those tests you have just listed, are they all NHS tests and were the reference ranges the same for every one?
Was every test done under the exact same conditions, i.e.
* Last dose of Levo 24 hours before the test
* Blood draw no later than 9am
* Nothing to eat or drink before test other than water
Only when the test is under the same conditions can we accurately compare results.
Did you get the private test which does both TPO and Tg antibodies?
As for your high creatinine levels, here is an article, is there anything there that may be relevant to your continued high level?
Thanks for your prompt reply. Yes all the tests have been done at the local hospital and all at 8.30 am. Last dose of Levothyroxine 24 hours before. Nothing to eat or drink either.
For levothyroxine you only need to leave about four hours to get past a small peak in fT4. TSH isn't affected, it maintains its normal diurnal variation. See these graphs thyroidresearchjournal.biom... taken from the original Saravanan study which is behind a paywall.
We store around 10 days worth of levothyroxine so once you get past the initial peak whilst it is being absorbed the timing of the blood makes little difference.
You should be aware that jimh111 has opinions on the testing conditions we should use that are at odds with practically everyone else on the forum. In your shoes I would go with SeasideSusie 's advice.
And how often does "evidence" actually pay attention to patient experience? Patients want to feel well, doctors only want to keep TSH in the reference range, and preferably well off the bottom of the range.
We keep about 10 days worth of L-T4 in the bloodstream so our daily tablet is a small contribution. Four hours after ingestion the minor peak in fT4 levels has gone (six hours if you want to be really safe). This peak has no effect on TSH. i.e. timing of blood draw after taking levothyroxine has no effect on TSH (provided you take the tablets each day).
If you objective is to raise TSH then it makes no difference whether you take the blood four hours or twenty four hours after the last dose. Time of day and (to a greater extent) time of month makes a difference.
The evidence I quoted pays no attention to patient experience, it rather coldly looks at fT3, fT4 and TSH after levothyroxine ingestion. It's a good study, carried out by Colin Dayan's team who are well respected. As long as you leave four to six hours after taking levothyroxine the duration (up to 24 hours) will have no noticable affect on your TSH.
I asked your advise about splitting my dose of T4 to twice a day and I feel much better for doing that and my sleeping is a little better at night. I’m not awake after one hour of sleep and feeling’wired’,anxious with heart palpitations. My body feels more relaxed but I still wake up four to six times to pass urine but manage to eventually fall asleep. This is a massive improvement for me.
The reason I’m writing now is that I’ve had my results back and wondered if you can analyse why my results differ each time?? TSH range (0.27-4.2). T4 (12-22). T3 (3.10-6.80)
I’ve never had a full thyroid range of tests. Can you place some light on these results as I have to speak to mr endocrinologist next week . Also my Creatinine levels are over range and have been for years but increasing to now 94 (45-84). I also have no Testosterone <0.09 ( 0.10-1.42)
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
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Ask GP to test vitamin levels and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
You are highly likely under medicated and Ft4 and especially Ft3 too low
Low vitamins highly likely
Just testing TSH is completely inadequate
Come back with new post once you get FULL Thyroid and vitamin testing
Palpitations are frequently due to being UNDER medicated
guidelines by weight might help push for dose increase
Even if we don’t frequently start on full replacement dose, most people need to increase 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.
I asked your advise about splitting my dose of T4 to twice a day and I feel much better for doing that and my sleeping is a little better at night. I’m not awake after one hour of sleep and feeling’wired’,anxious with heart palpitations. My body feels more relaxed but I still wake up four to six times to pass urine but manage to eventually fall asleep. This is a massive improvement for me.
The reason I’m writing now is that I’ve had my results back and wondered if you can analyse why my results differ each time?? TSH range (0.27-4.2). T4 (12-22). T3 (3.10-6.80)
I’ve never had a full thyroid range of tests. Can you place some light on these results as I have to speak to mr endocrinologist next week . Also my Creatinine levels are over range and have been for years but increasing to now 94 (45-84). I also have no Testosterone <0.09 ( 0.10-1.42)
Im a female. I have always had very low vitamin d, ferritin, folate so I’ve been taking two vit d tablets a day for 10 years and folate once a day for three years. I probably have low other vitamin levels but never had them tested
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast (or even half a tablet for first week)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Your thyroid results don't really differ. TSH is a pulsatile hormone and levels change a bit every half hour. There is also a diurnal variation in TSH, it is highest early am (3 am?) and lowest mid-afternoon. Also, there is very considerable variation in menstruating women.
Your results are consistent with your levothyroxine dose assuming your thyroid is partially failed. I would ask for an increased dose and see how you go. Creatinine can be high during severe hypothyroidism (mine was) but it is not a good marker because individual levels vary so much.
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
Do you have Hashimoto’s?
Ask GP to test vitamin levels (and thyroid antibodies if not been done)
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
I also normally split my levothyroxine dose
On day before test take full dose in morning the day before blood test - this gives 24 hour time gap
Thank you so much. I will post results when I get them. I have got the TOO antibodies but endocrinologist says that’s normal to have them. Every time I get my Endocrinology appointment I get a different specialist. It’s driving me mad!!
About 90% of primary hypothyroidism is uk is due to autoimmune thyroid disease (Hashimoto’s) confirmed by high thyroid antibodies
Hashimoto's frequently affects the gut and this often leads to low stomach acid and then low vitamin levels
Low Vitamin levels are EXTREMELY common with Hashimoto’s
Low vitamin levels affect Thyroid hormone working and improving to optimal levels can improve symptoms
Poor gut function 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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
I asked your advise about splitting my dose of T4 to twice a day and I feel much better for doing that and my sleeping is a little better at night. I’m not awake after one hour of sleep and feeling’wired’,anxious with heart palpitations. My body feels more relaxed but I still wake up four to six times to pass urine but manage to eventually fall asleep. This is a massive improvement for me.
The reason I’m writing now is that I’ve had my results back and wondered if you can analyse why my results differ each time?? TSH range (0.27-4.2). T4 (12-22). T3 (3.10-6.80)
I’ve never had a full thyroid range of tests. Can you place some light on these results as I have to speak to mr endocrinologist next week . Also my Creatinine levels are over range and have been for years but increasing to now 94 (45-84). I also have no Testosterone <0.09 ( 0.10-1.42)
I asked your advise about splitting my dose of T4 to twice a day and I feel much better for doing that and my sleeping is a little better at night. I’m not awake after one hour of sleep and feeling’wired’,anxious with heart palpitations. My body feels more relaxed but I still wake up four to six times to pass urine but manage to eventually fall asleep. This is a massive improvement for me.
The reason I’m writing now is that I’ve had my results back and wondered if you can analyse why my results differ each time?? TSH range (0.27-4.2). T4 (12-22). T3 (3.10-6.80)
I’ve never had a full thyroid range of tests. Can you place some light on these results as I have to speak to mr endocrinologist next week . Also my Creatinine levels are over range and have been for years but increasing to now 94 (45-84). I also have no Testosterone <0.09 ( 0.10-1.42)
May 2017 shows low Ft4 and had you had thyroid antibodies and vitamin levels tested then, likely would have been started on levothyroxine
Dose of levothyroxine should be increased slowly in 25mcg steps until Ft4 in top third of range, ft3 at least half way through range and all four vitamins need to be regularly tested and frequently need continuous Vitamin supplements to maintain optimal vitamin levels
When hypothyroid, low stomach acid leads to poor gut function and low vitamin levels
TSH is frequently very unreliable, especially with Hashimoto’s and/or low vitamins....essential to ALWAYS test Ft4 and Ft3
So my differing levels up and down even on the same dose of Levothyroxine don’t mean I have Hashimoto or does it??
I think I need to test all the thyroid hormones privately and my vitamins. Ten years ago I was less than <25 nmol/L severely deficient and placed on 2 tablets vit d a day. I was tested for vid D and folate by surprise and I had taken both doses that morning and my levels were
May 2017 Serum 25 hydroxy vitamin D 125 nmol/L ( 50-200)
So they stopped the tablets
My folate same day was 2.7 ug/ L (3.9-26.8)
So they then started me on folate tablets 5 mg per day
Then when I was retested my vit D2 + D3 lvl combined was 83, folate 6.7, ferritin 27 ug/L ( 13-150). Then in Nov 2018 combined vit D2+ D3 was 61, magnesium 0.92 nmol/L ( 0.7-1.0), vit B12 316 ng/L (197-771), ferritin 34
Problem is they don’t test all the thyroid and all the vitamins each time but one thing is certain if I didn’t take tablets I wouldn’t make any vitamins.
Can you make any sense of the above and if the varying results affect the thyroxine swaying up and down????
We ALWAYS recommend getting FULL thyroid and vitamin testing BEFORE seeing any endocrinologist
A) it’s important to test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If see endo....they will do tests after consultation (obviously Timing is useless)
B) If vitamin levels are too low...improving them by supplementing often improves conversion of Ft4 to Ft3 and may increase TSH ...making it easier to get dose increased
C) NHS refuses to test TG antibodies if TPO are negative. Private testing will always test both
Thanks for advice. I’m going to test all the levels privately. I really don’t have much faith in doctors or endocrinologist to make informed decisions as I’m tested so haphazardly over the last few years. In the early days I never asked for my results. Reading your posts as given me the courage to ask for them. I have found taking the second dose before bed helps calm my system down and reduces my heart palpitations. I suffer with cramps and wake up four to six times every night. I suffer with extreme fatigue, high pain, hypothermia, heightened anxiety, migraines and sickness if my thyroxine gets too low. My teeth and bones ache if my vitamin D is too low. So I’m learning at last to acknowledge my bodily symptoms and through asking yourself and others on this site feel more informed to say these problems to the specialists. Before I just thought they would think I’m a hypochondriac. It really isn’t fair as every part of our body ( organs, muscles and bones) hurts and throbs if thyroxine is too low. I think my lack of testosterone is linked to this too. It really is a shame that the specialists don’t suffer as we do and then they would understand. I’ll post my results when I get them done but it’s a difficult time with Covid outbreak.
Even if we don’t start on full replacement dose of levothyroxine, most people need to increase 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.
Can you tell us what your current dose of Levo is, and what dose was doubled or halved when your dose was changed. Dose of Levo should only be altered by 25mcg at a time at the most. Doubling and halving your dose sounds like it isn't surprising that your results are swinging wildly.
Also, the way you describe what your doctor is doing makes me think he is dosing you only by your TSH which is rarely a good measure of "wellness" in thyroid treatment.
You also need to ask your surgery (the receptionists, not the doctor) for access to your blood test results and reference ranges online. If they can't do that then they must give you copies of your blood test results by law. They can't refuse. (Take proof of identity with you.)
Porridge does not affect my absorption of liothyronine, a small molecule which is rapidly absorbed. It may affect other patients with poor gut function. I don't know of any studies of liothyronine absorption with food but it is 95% absorbed and so perhaps not as susceptible as levothyroxine which has roughly 40% to 60% absorption with big variances between individuals.
Certainly some foods bran, coffee and fatty meals can affect levothyroxine absorption. I think the 24 hour advice for levothyroxine came from the assumption that it is taken before breakfast and the blood taken early morning. This doesn't help those who take levo at bedtime. Four or six hours is plenty for levo and the best advice for liothyronine or NDT is to have the blood taken roughly half-way between doses which is 12 hours if you take it once a day or six hours if twice daily.
(I don't know about absorption of NDT with food as I'm not aware of any studies and of course NDT is food! Seriously, NDT is not bound to e.g. sodium and doesn't have so many excipients as synthetics.)
With levothyroxine consistency does not have to be very consistent! That is because we store around 10 days worth of levothyroxine and so occasional variances don't matter, as long as your inconsistency is consistent - if you see what I mean. It doesn't matter if you vary a little from day to day provided you don't make a change for many days. The moral is you don't need to be too rigid things even out.
Bran has a major effect as can be seen in the study "Altered intestinal absorption of L-thyroxine caused by coffee" pdfs.semanticscholar.org/87... . If you look at Fig 1 you can see how bran can have dramatic effects for some subjects semanticscholar.org/paper/A... . This study used 10.2 g of bran but we would expect smaller amounts to have a smaller though still substantial effect.
By the way an elderly friend of mine has 4 or 5 Weetabix for breakfast! We originally met on holiday in Peru and he had one suitcase dedicated to his breakfast.
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
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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Urgent advice needed as I am flying to Menorca tomorrow
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Latest thyroid results after splitting dose the day before - NDT
