After having a thyroidectomy in 1984 I have taken levothyroxine. All seemed to be well until 7 years ago when I had an oophectomy. My levels shown in blood tests for t4 seemed to shoot up and I have now gradually got down from taking 175 mcg to 125mcg on 5 days and 100mcg on 2 days. All very well for blood results it seems as now stabilised but I've started to put on weight and don't feel myself at all. I also take hrt which helps with other symptoms of surgical menopause. I am wondering whether my doctor will prescribe t3 but not sure whether he will think I need it as within range, albeit the lower end. My latest results which is said is ok is TSH 0.19, T4 15.6 and T3 3.8. What does anyone think of these results? T3 is on the lower end and wondered if supplementing with T3 would make me feel better.
New here. : After having a thyroidectomy in 198... - Thyroid UK
New here.
Min789
My latest results which is said is ok is TSH 0.19, T4 15.6 and T3 3.8. What does anyone think of these results?
If you can please add the reference ranges for these results, we will be able to interpret them accurately and hopefully offer some meaningful suggestions. Ranges vary from lab to lab so we need your lab's ranges which should look like, eg:
FT4: 15 (12-22)
If you don't have the ranges then ask at your surgery's reception desk for a print out of your results.
GPs can't initiate prescriptions for T3, it has to come from an endocrinologist.
Hi, just contacted surgery and the ranges are TSH .35 - 5.5, T4 10-19.8, T3 3.5 - 6.5.
Thank you.
Min789
TSH 0.19 (0.35 - 5.5)
T4 15.6 (10-19.8)
T3 3.8 (3.5 - 6.5)
Your FT4 is 57.14% through range and your FT3 is only 10% through the range.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well. So although your TSH is good, your FT4 and FT3 aren't at the right levels for you. Also, your conversion of T4 to T3 is poor as shown by such a low FT3 compared with your FT4. Low T3 causes symptoms and makes weight loss difficult.
Conversion can be affected by a few thigs, and can be helped by supplementing with selenium and zinc but it's prudent to test first to check levels.
Also, optimal nutrient levels are needed for thyroid hormone to work properly and good conversion, so you'd need to test:
Vit D
B12
Folate
Ferritin
Do you take your HRT well away from your Levo?
When did you start your HRT?
An increase in dose of Levo is often needed when on HRT - see
btf-thyroid.org/information...
HRT and phytoestrogens
........ However, women with pre-existing hypothyroidism treated with thyroxine, may require an increase in their thyroxine dose after starting HRT. Therefore it is useful for thyroid function tests to be re-checked after starting HRT. ..............
Do you take any other medication or supplements?
Thank you for your quick reply. I agree that it looks as though I'm not converting my T4 into T3 well enough. Is this something that my doctor would work with me on do you think? If only an endocrinologist can prescribe me the T3 he may be reluctant to do so or can I insist? I could ask for the other tests although I know my vitamin D levels are fine as already been tested. I do take my oestrogen within about 30 mins of my levothyroxine. How long should I leave do you think?
Min789
I agree that it looks as though I'm not converting my T4 into T3 well enough. Is this something that my doctor would work with me on do you think?
Most doctors have little knowledge of T3 so it depends on your GP. My GP only goes by TSH, it's what they're taught, she completely dismisses FT4 and FT3.
If only an endocrinologist can prescribe me the T3 he may be reluctant to do so or can I insist?
No, you can't insist. Most endos are diabetes specialists with very little knowledge of hypothyroidism and even less knowledge about T3. If you manage to find a T3 friendly endo then they can refuse to see you if they think your test results are fine (if they're in range they often wont see a patient).
One thing you can present to your doctor is a paper by Dr Toft, past president of the British Thyroid Association and leading endocrinologist where he says that T3 may be helpful for many patients
rcpe.ac.uk/sites/default/fi...
However, before going down that route you'd need to address everything else that I mentioned above to see if you can improve your conversion.
I could ask for the other tests although I know my vitamin D levels are fine as already been tested.
What is your current Vit D level? The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).
I do take my oestrogen within about 30 mins of my levothyroxine. How long should I leave do you think?
To avoid any possible problems, I'd take it at opposite ends of the day.
Levo needs to be taken on it's own. Always advised here is to take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours and some need as long as possible.
My vitamin D results are 72.7 which I assume is ng/ml which is ok I think. I will follow your advice as far as when to take levothyroxine as well as other medication although it will now be another year before I am due my next blood test for levels of thyroxine etc. Do you think I should see my doctor before or wait and see?
My vitamin D results are 72.7 which I assume is ng/ml which is ok I think.
In the UK the unit of measurement is usually nmol/L. I think Scotland sometimes uses ng/ml. I would check that result because if it is nmol/L then you are not at the recommended level and if it is ng/ml then you are over the recommended level.
it will now be another year before I am due my next blood test for levels of thyroxine etc. Do you think I should see my doctor before or wait and see?
You say:
I've started to put on weight and don't feel myself at all.
and your results bear this out. Can you actually wait another year feeling the way you do?
My suggestion is to get those tests done that I mentioned above. Whether you ask your GP or whether you do them privately is up to you. If you want to do them privately then the cheapest way is with the thyroid/vitamin panel with either Medichecks Thyroid Check ULTRAVIT (cheapest) or Blue Horizon Thyroid PLUS ELEVEN.
Once you have results for everything then you can see if there is anything affecting conversion. If so, work on optimising all your nutrient levels and see how things go then. If you still have a very low FT3 compared with your FT4 then it's time to start pushing for the addition of T3.
Hi have made an appointment with my doctor for next week. I will ask him for the additional bloodtests for vitamin levels as you suggested and also if they come back ok I will suggest to him that he adds t3 to my medication because of how I am feeling. Whether he will or not is another matter but I fully intend to put my case across as well as I can. Should he still disagree then I may have to go down the self medicating route and will tell him that. Can I buy t3 online anywhere? Any suggestion of sites willing to prescribe it to me?
Optimal results are as follows:
Vit D - 100-150nmol/L according to the Vit D Council/Vit D Society.
B12 - serum B12 minimum 550pg/ml, better at top of range, Active B12 below 70 suggests testing for B12 deficiency, over 100 is better.
Folate - at least half way through range
Ferritin - at least 70 and for females I've seen it said that 100-130 is a good level.
Yor GP wont agree with these figures, they just see something anywhere in range and say it's fine.
There are places to buy T3 online but it can be dodgy. If you need to then make a new post asking for recommendations then check out any that you are given with myself or another member of the Admin team to see if we have any feedback on the supplier.
Hi thank you once again. As mentioned before I'm seeing my GP this Wed and I'm going armed with the print out you suggested earlier by AD Toft. I will ask for blood tests to be done that you suggested. But after all that if he still refuses to either up my dose of levothyroxine or give me T3 which will mean I will need to try and source the T3 from abroad, will I need a prescription from my doctor or can I get the meds without one? Thank you, Christine.
Your GP probably wont give you a private prescription for T3, you'd need to find a doctor who will and then it can be sent to Germany. T3 without prescription can be sourced but it's not always easy as there are some dodgy suppliers. If you want to go down that route then you'd need to make a new post asking for recommendations then check out the recommended suppliers with myself or another of the Admin team to see if we have any feedback on them, we can steer you away from any supplier that we may have received negative feedback about.
Hi, I saw my gp last week and he has referred me to an endocrinologist. My gp seemed sympathetic and listened to me but I feel maybe his hands are a bit tied as my TSH is ok which is why he has referred me to an endo. He said that they can authorise him to increase my levothyroxine and he has asked the endo in his letter to consider T3 for me. I don't have much faith after hearing other people's experiences but I will have to see. My gp has increased my dose from 100 mcg on two days to 125 mcg on all 7 days so an increase of 50mcg over the week which isn't much but better than no increase. He has told me to have a blood test for thyroid levels at the end of September. He has arranged for me to have ferritin, vitamin B 12, folate as well as lots of other tests to see if there's another reason why i am feeling as i do I suppose. My question is, should I fast before having these vitamin tests done and if so how long before the blood test? Thank you Chris.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Thank you, but it is just the vitamin tests not thyroid I am having done this week. So presumably I won't need to fast for those? I do take Biotin tho so I will leave it another week before I have the tests done.
Iron test needs an 8-12 hour fast, so just in case serum iron is done as well or instead of ferritin then I would be inclined to fast. I always do as I've been caught out before by them doing more tests than I was booked in for. They never seem to tell you if fasting is required so I just do it as a matter of course now.
Ok will do and once I have results I will let you know. Thank you.
Hi, I got the results from blood tests today and the doctor tested me for loads of things all of which look within range apart from my serum albumin level which was below range at 33g/L (35.0-50.0). Not sure what that means but doctor hasn't called me in so assume he's not worried.
Vitamin B12 was 499.0 no/L (211.0 - 911.0)
Ferritin serum c reactive protein level <4 mg/L (0.0 - 6.0)
Serum Ferritin level 74.5 ug/L (10.0 - 291.0)
Folate 9.31 ug/L (>5.38)
As I've mentioned he also tested Urea and electrolytes and liver function and full blood count all which look ok. ( apart from Albumin)
Vitamin D was tested previously and was 74. which was ok.
Do you think that these levels look fine to you?
Still not feeling well, lack of energy and motivation and legs constantly aching.
Having another blood test for thyroid end of September. Waiting for apt with endo at the moment.
SeasideSusie
I think this reply may have been intended for you.
Min789 Unfortunately you replied to yourself rather than SeasideSusie or anyone else. A lot of people don't read older posts so adding a reply to an older post will often not get a response, unless you specifically tag someone. You could increase your chances of getting replies if you write a new post asking for feedback on your latest results, and include them plus the reference ranges.
Oops thank you for that. I suppose I thought I should reply to seasideSusie as she had requested I get the blood tests done. Is it too late to put it out as a new post or now that you have replied will it go out automatically?
Min789
I would ask your GP about the slightly low albumin. In isolation it may be nothing to worry about, but that's just one part of a liver function test so it would depend, I suppose, on what the other results are like. I don't know enough about it to help.
Vitamin B12 was 499.0 no/L (211.0 - 911.0) = 676pg/ml
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok: an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml." so your level is OK according to that.
CRP is OK.
Serum Ferritin level 74.5 ug/L (10.0 - 291.0)
Not bad although I've seen it said for females 100-130 is a good level, maybe eat liver, liver pate, black pudding every couple of weeks, and include other iron rich foods in your diet to maintain this level or possibly improve it a bit.
Folate 9.31 ug/L (>5.38)
Not bad, I'd want mine in double figures.
Vitamin D was tested previously and was 74. which was ok.
This is in the sufficient category but falls short of the level recommended by the Vit D Council - 125nmol/L and the Vit D Society - 100-150nmol/L.
Thank you SeasideSusie, I will do as you say and eat more liver ( my husband will be pleased 😁) but apart from that it seems that everything is ok so my bad conversion isn't probably to do with my vitamins and minerals. I will continue to try and persuade my doctor to increase my levothyroxine even more than he has done or if he will not then I will have to wait and see what the endocrinologist has to say.
It's so annoying as my previous doctor was brilliant and kept me on a higher dose of levothyroxine as that was where I felt good at.
Although I must admit in recent years my TSH has fallen so that's why the new doctor has decreased it.
As my Folate isn't in double figures how is the best way to increase that slightly?
Min789
As my Folate isn't in double figures how is the best way to increase that slightly?
A good quality B Complex will raise your folate level and also improve your B12. As I said, your B12 is fine according to the quote from Sally Pacholok's book. You've had a serum Total B12 test which isn't the best, an Active B12 test is better as it measures what is available to the cells whereas the Total B12 test measures the total of bound and unbound (active) B12 and doesn't differentiate so you don't know what's available to the cells with that test. I've always done very well with Thorne Basic B.
But you should also look at your Vit D and try to get that up to the level recommended by the Vit D Coucil/Vit D Society.
From your previous level of 74nmol/L (29.6ng/ml), to reach the recommended level the Vit D Council suggests supplementing with 3,700iu D3 daily (nearest is 4,000iu).
Retest in 3 months.
For best absorption of oral supplements that are swallowed, D3 softgels are best (eg Doctor's Best). There are also oral sprays and sublingual liquids which give good absorption. Avoid tablets and capsules.
When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
There are important cofactors needed when taking D3 as recommended by the Vit D Council
vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
naturalnews.com/046401_magn...
drjockers.com/best-magnesiu...
Check out the other cofactors too (some of which can be obtained from food).
**
IRON
ng/ml is the same at ug/L when measuring ferritin.
It's said that for thyroid hormone to work properly (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
apjcn.nhri.org.tw/server/in...
Hello, I have just ordered Better You vitamin D mouth spray 3000 and also igennus super B complex so am hoping that will help with my levels. I have just started taking Magnesium supplement to help with my sleep which is awful to say the least.
Thank you for your ongoing help.
If that isn't the combined D3 + K2 spray then you'll need to take K2 separately.
No it isn't as far as I know. Didn't know there was one. This one was recommended on this forum.
Have just changed my order to combined D and K Better You product. Fairly expensive but I'm sure will be worth it. Thank you.
K2 is one of the more expensive supplements whichever way you take it - combined in a supplement with D3 or separately, but it is essential as mentioned above.
Both vitamin D and B12 and folate might benefit from supplementing
Vitamin D is too low. GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
Local CCG guidelines
clinox.info/clinical-suppor...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
B12 and folate on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low vitamin D and low B vitamins may be linked as explained here
healthunlocked.com/thyroidu...
FT4 is too low. FT3 is dire.
You either need dose increase in Levothyroxine or addition of small dose of T3
As you managed fine previously on higher dose Levothyroxine that's first thing to try
Though HRT may be hindering conversion
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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 – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine
Hello Min
Just as a point of reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3 and this small amount of T3 represents 20% of roughly your daily requirements. T4 is a prohormone and the body needs to convert the T4 into T3. and one obvious reason that conversion maybe compromised, is if vitamins and minerals are not optimal.
I personally think that if there has been medical intervention and the thyroid surgically removed or ablated with RAI that both these vital hormones need to be on the patients prescription for if, and probably when, they are necessary.
Some people can get by on T4 alone, some people simply stop converting T4 into T3 at some point in time, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to level of well being acceptable to the patient, which generally sees both these hormones in the upper quadrants of their ranges.
As you may know T3 is difficult to obtain on the NHS, and currently a trial is only sanctioned by an endocrinologist. There is room to increase your T4, which proportionally should increase your T3 but the disparity between the two is considerable with a T4 @57% and a T3 @ 10% through the range. If your doctor is placing too much reliance on the TSH he will be looking to reduce your dose as your TSH is below the range. A reduction in dose may increase the TSH, maybe into range, but to the detriment of both your T4 and T3 levels and making you more symptomatic.
The sensible thing to do is add a little T3 into the mix. This may be difficult, as with a suppressed TSH this fact was used to refuse me a trial of T3 on the NHS.
I went on to trial T3 and Natural Desiccated Thyroid for myself. Both worked for me, and I have continued to self medicate with NDT as it is as near as possible containing all the known hormones that our own thyroids produce.
There is a book you might like :- Your Thyroid and How To Keep It Healthy - written by a doctor who has himself hypothyroidism. Dr Barry Durrant - Peatfield writes in an easy to understand manner and it's all things thyroid that we need to know about, so that we can try and compensate for the fact that we have lost this major gland responsible for full body synchronisation, our metabolism. our internal central heating system and our, mental, physical, emotional, psychological and spiritual well being.
Thank you Pennyannie, I am seeing the doctor tomorrow and I have made a note of all the things yourself and Seasidesusie recommends I ask him about. I have not long moved to this area so not sure what his reaction will be to my requests as I have only seen him once or twice, but I know he lowered my levothyroxine as my TSH was too low when I did visit him six months ago. That's when most of the problems started unfortunately.
The book sounds interesting and I will certainly buy it.
Will be in touch once I have seen him, fingers crossed he is understanding.
New here - please advise...
I'm new here...
What symptoms tell you how much to change daily dosing by?
