Have had private test by Blue Horizon
Can someone please help me understand my recent... - Thyroid UK
Can someone please help me understand my recent blood results. My GP cut my Levo from100mcg to 50mcg in Jan as she said my tsh undetectable
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Esinedharry
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SlowDragonAdministrator
What time of day exactly was this test done
EXTREMELY important to also test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common
Ask GP to test vitamin levels
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)
Is this how you do your tests?
Your cortisol looks very low ....but the result depends on what time you did the test
What vitamin supplements are you currently taking
SlowDragonAdministrator
Ft4 is only 31% through range
Ft3 only 36.5% through range
Helpful calculator for working out percentage through range
These results show you are under medicated
Most people need Ft4 and Ft3 at least around 50-60% through range....often higher
Ask GP for 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
guidelines on dose levothyroxine by weight can help push GP to increase dose
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
gp-update.co.uk/Latest-Upda...
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
SlowDragonAdministrator
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)."
(That’s 58% minimum through range)
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
Also request list of recommended thyroid specialist endocrinologists- NHS and private
Thank you for this very comprehensive reply. The test wa taken at 11am. No Levo taken but I had eaten breakfast. My story began in 2000 when I lost a stone in 2 weeks my hands shook and eventually my feet and ankles swelled. Was diagnosed with Hyperthyroidism and took Carbimazole for 2 years. Then became Hypo and told to cease all mess. In 2007 after a blood test for something else was told I had Hypothyroidism and prescribed 100mcgs Levo. In 2010 had huge weight gain and very fatigued. Had moved house and saw a new GP. He said my TSH was undetectable so I should reduce my Levo. I disagreed having read a little on the subject. After long discussions he said he would raise my Levo as long as I had a Dexa scan as he was worried about osteoporosis. I Had the scan and we eventually agreed I would stay at 100mcg Levo daily and 125mcgs every third day. He also prescribed caliche which I couldn't tolerate so replaced that with Vit D3 800 in capsules which I still take. All was well until last October when I began to gain weight and feel exhausted again. Had a new GP and she was horrified that my TSH was undetectable so said I must cut my Levo to 50mcgs. Was retested in Jan and she wanted to cut my dose again. She said I was Hyper again! I disagreed and refused to drop to a lower dose. I told her I felt exhausted and overweight but she was having none of it. Not been tested since because of Covid hence the Blue Horizon private test. With all your helpful comments I intend to contact her again and insist she look into my situation more forensically and stop relying on the TSH result alone. Thank you for your excellent help. I am 68 years old and struggling to get to grips with the technical data surrounding this condition.
Suggest you email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists - NHS (very long wait) or private - best option pick someone who does both and see them privately initially
tukadmin@thyroiduk.org
GP’s get jittery when TSH is low....but most important results are Ft3, followed by Ft4
Low vitamin levels tend to lower TSH
Lower B12 gets much more common as we age
Low vitamin D widespread, but especially common with autoimmune thyroid disease
Many, many people with autoimmune thyroid disease, when adequately treated have extremely low TSH ....as long as Ft3 is within range you are not over medicated
Have you ever had high thyroid antibodies in the past?
Obviously both antibodies are low now
Ask for ultrasound scan of thyroid.
Costs about £150 if need to do it privately
20% of Hashimoto's patients never have raised antibodies
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
Likely you always had Hashimoto’s (hypothyroid autoimmune thyroid disease) Hashimoto’s frequently starts with transient hyperthyroid results and symptoms
Insist that GP tests vitamins .....or test privately
800iu vitamin D may not be high enough dose
ncbi.nlm.nih.gov/pubmed/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
B12
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
I have no idea if I have ever had high thyroid anti bodies as I have never had sight of any blood results until now!.
Beware of the medical professionals treating a patient who has hypothyroidism when they only take notice of the TSH result and there's been some mistakes when they are trained as they all seem to believe that a hypo patient's TSH should not be low (because they then suspect the patient is now hyPERthyroid) but we who're hypo know that when the TSH is low, even very low, and our symptoms are resolved that we're on the correct dose. So, the ideal is a TSH around 1, with FT4 and FT3 towards the upper part of the ranges.
How do you feel now? And how did you feel when on 100 mcg a day?
It's a shame that so many GPs are TSH obsessed, because many of us hypos consider our actual thyroid hormone results are much more important. At the moment your free T4 is very low - a feeble 31% through range - and your free T3 is only a bit higher at 36.5% through range. Most of us need those to be at least in the top third of range - regardless of what that does to TSH - so if you're not feeling great (and I'd be surprised if you are) - you need a dose increase ...
I am constantly tired and I am struggling to lose weight. Have been to Slimming World for 4 months and have had to almost starve myself to lose 7lbs! I am also unbelievably emotional and am reduced to tears at the slightest thing.
Please see if you can get your meds increased. I've found it pretty well impossible to lose weight unless both "frees" are nice and high in range - and yours are a long,long way from optimal. And not surprising you feel emotional and "hormonal" when your thyroid hormones are such a mess.
Any chance of seeing a different GP or persuading yours that TSH is only really useful in finding who is hypo - and has no real role once you're on meds? Good luck x
I know, having little control over my emotions can be very embarrassing at times!
Testing your Free T4 and Free T3 will be informative, because if both are low you need an increase in your dose of thyroid hormones.
T3 is the 'active' thyroid hormone and is needed in our millions of T3 receptor cells.
T4 (levothyroxine) - it is assumed that it will convert to T3 but we need sufficient T3.
This is an excerpt:
"When we measure thyroid hormones, the three most common markers are TSH (thyroid stimulating hormone), free T4, and free T3. While TSH has gotten plenty of press over the years, free T4 and T3 are actually more accurate indications of thyroid function. Knowing their roles in the body, and in particular why free T3 is so important, makes it easier to put the big picture together when trying to understand your thyroid symptoms and labs.
A brief overview of thyroid hormone production.
Thyroid function is like a relay race, with hormones passing the baton from the hypothalamus in the brain to the pituitary gland beneath it, then to the thyroid gland, to the liver, and finally to cells throughout the body.
The hypothalamus delivers messages to the pituitary gland via the chemical messenger thyrotropin releasing hormone (TRH).
drknews.com/conversion-t4-t...
From members on this forum it seems that few doctors are 'trained in dysfunctions of the thyroid gland' and they seem hell bent on only taking notice of the TSH which varies throughout the day. That's why the recommendation on the forum is for the earliest, fasting (you can drink water) and 24 hour gap of thyroid hormones blood test. This helps keep the TSH at its highest and may prevent the doctor adjusting our dose according to the TSH alonse.
Thank you for your help. I did put the results of a very recent private test done by Blue Horizon on my first post in this thread. Others have told me that from my results my FT3 & FT4 are low in range. I now need to seek a blood test for vitamins and to start reading the useful links people have sent me. Once fully 'armed' I intend to see my GP again and if there is no support seek a private appointment with an Endocrinologist.
The following is from an 'expert' and a true expert not someone who hasn't a clue about thyroid hormones. The following is an excerpt from his website, so read the whole article for more info.
"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. Unfortunately, the medical profession has clung to the misleading TSH test since then some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact, the state of inadequate T3-effect in some or all tissues. They are taught wrong. TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range. The physician cannot object. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems.
You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second."
Very interesting. Thank you.
shawsAdministrator
It seems to me that the majority of doctors know little about hypothyroidism, i.e. they take more notice of the TSH result (which is from the pituitary gland - not the thyroid gland) and when our thyroid hormones are low, the pituitary gland (TSH) tries to flag our thyroid gland to produce more hormones.
The aim is a TSH of 1 or lower with Free T3 and Free T4 in the upper part of the ranges. Doctors seem to be unaware of the 'Frees' as they only seem to take notice of the TSH (thyroid stimulating hormone). They should also take into consideration of how 'we feel' on a particular dose of levothyroxine or other thyroid hormones we may take. We want to feel well and have no symptoms and many members feel better when TSH is 1 or lower and both Frees (FT4 and FT3) in the upper part of the ranges.
Levothyroxine or other thyroid hormone replacements should be taken (usually first thing) with one full glass of water and wait an hour before eating. Food can interfere with the uptake.
If you've not had B12, Vit D, iron, ferritin and folate checked, ask for these when next blood test is due.
Thank you for this response the straightforward way you have explained things is very helpful. I will speak to my GP about anther blood test for vitamins etc.
If they won’t test, get tested privately
Esinedharry, I would be speaking to the doc about putting me back on the previous dose of levo. This was what happened to me in the early days of my hypothyroidism. 8 years on I have taken control by educating myself as much as possible (A long hard road) about my disease (with Hashi's too) and being ready to stand up for my rights. I now have a small amount of T3 with my T4 and things are so much better. My T4 and T3 results were very much like yours, T3 even lower. I know that if my Tsh approaches anywhere near 1 I am in trouble. Best of luck on your health journey
Thank you so much. I am so grateful for your help. I struggle to get my head around the technical data. I also find that as I am 68 years of age I am not considered a priority for ANY medical issue and my GP considers Hypothyroidism a bit of a myth!
Yes I am over the hill too. They think because we are of a certain age that we will just accept without argument what they say as gospel. I am still learning and not just about thyroid issues. It's time that docs were given refresher course on thyroid that was taught to them by thyroid patients!
Couldn't agree more!
Suggest you read posts everyday.
Read up as much as possible about importance of good vitamins and why we ALWAYS need to test Ft4 and Ft3
Thank you will do.
It is not our fault that their training is abominable and all of us on this forum have had to read, ask questions, and control (if possible) their symptoms due to members' responses.
I have had the opportunity to consult with two doctors (sought after by many, many patients). These doctors were taught all about thyroid hormones and the purpose of them as students. They are now deceased but many, many people travelled all over the UK to consult with them.
Even before you sat down they knew a hypo/hyper patient just by looking at them.
For Dr Barry Peatfield the woman he restored to health- Diana Holmes - wrote a book 'Tears Behind Closed Doors' and it is available from Thyroiduk . It is an amazing read of Diana's long, long road to good health. It could actually be made into a film I believe and endocrinology students should be allowed to view it or, at the very least, be given a copy to absorb and take notice.
Diana then went on to work for Dr Gordon Skinner - another doctor pursued for doing as he was taught as a trainee doctor.
Even though the GMC called him before them several times, he was always found not guilty as the seats were filled by his patients whose 'lives he saved'. I doubt many doctors re dysfunctional thyroid glands would get the same adoration.
The fact that quite a number of researchers/scientists have proven that many, many hypo patients improve on T4/T3 or T3 or NDT (NDT being the very original that saved lives from 1892 onwards up until Big Pharma saw a way to improve their profits by inventing levothyroxine (T4 alone). NDT contains T4, T3, T2, T1 and calcitonin and being made from animals' thyroid glands more conducive to the human body. Isn't it a pity that to withdraw NDT from being prescribed, that False Statements were made in order to do so.
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