Hi I wrote on here 3 months ago asking for help with blood results I had received from a private test with Blue Horizon. I had very helpful responses and was advised to seek an appointment with my GP to discuss an increase in my level. I have been unable to see my GP as a result of Covid restrictions but I was finally called for a blood test last Friday. I requested the first appointment of the day, drank nothing but water and my last dose of Levo was more than 24 hours previously. The test was done at 8.40am. These were the results:-
TSH =2 Range 0.3-4.4
T3 =3.9 Range 2.4-6
T4 = 10.9 Range 9-19.1
My GP has said no action required. I feel completely brow beaten! I am suffering with dreadful headaches almost daily, constipation, skin like sandpaper, dreadful fatigue and feel terribly down. My GP will not agree to see me or discuss my situation. Any suggestions please?
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Esinedharry
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I just read you are only taking 50mcg of Levothyroxine? That is just a starter dose and your doctor is clueless if they are dosing you by your TSH. Can you change doctors?
I spoke to her last October requesting a dose increase as I was feeling very tired. She did bloods. And said my TSH was undetectable therefore I must reduce my Levo. I disagreed and she insisted I be tested again in January. My TSH was still undetectable so she cut the dose to 50 mcgs I have only just had a nhs retest and she says I’m fine!
I’m not sure. I assume it was below the bottom of the range. I have asked for a print out of my blood results and that’s gone down like a lead balloon.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
I am 68 and well passed menopause. I take I take 800iu of vit D daily. I am not veggie or vegan. I eat a balanced diet of fresh veg and not too much meat.
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.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
Many, many people on adequate levothyroxine will have TSH well under one
Ft3 needs to be a minimum of 60% through range for most people
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 Ft3 at 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
Your Ft4 is far too low you need 25mcg dose increase in levothyroxine and bloods retested in 6-8 weeks
Also politely INSIST on testing of vitamin D, folate, ferritin and B12 if not been tested recently
Previous dose reduction was likely unnecessary and certainly far too large
guidelines on dose levothyroxine by weight
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, or near 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.
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.
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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. Gluten intolerance is often a hidden issue to.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists... NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Thank you but I really don’t understand what that means. What is the Spina Thyroid app and what does its results mean for me. Sorry if I am being dim but I am struggling to understand these thyroid terms and issues!
Just to point out some background and (human) links:
From that link to Thyroid Patients Canada, I quote:
SPINA-Thyr has been in development since the late 1990s under the leadership of Dr. Johannes Dietrich, Specialist in internal medicine, endocrinology and diabetology, BG University Hospital Bergmannsheil, Bochum, Germany.
And from the Thyroid UK website, I quote:
Dr. Johannes W. Dietrich, M.D.
Dr Dietrich is a consultant endocrinologist at Bergmannsheil University Hospitals. He received his MD at Ludwig Maximilian University of Munich. He is a Fellow in Endocrinology at Ruhr University of Bochum, Germany and a specialist in genetic counselling in endocrinology (GfH) Düsseldorf, NRW, Germany.
He has always been fascinated by homeostasis and other concepts of biomedical cybernetics. He is particularly interested in why and how the logical structures of biological information-processing algorithms relate to their behaviour and that of the embedding organ systems. This motivated him to investigate thyroid homeostasis.
He has initiated multiple clinical trials. Key results of his work include the development of a mathematical theory of thyroid homeostasis, the development of a simulation program of pituitary-thyroid feedback control (SimThyr) that is today used in more than 80 countries for education and research, and of a mathematical method for calculating the thyroid’s secretory capacity and total deiodinase activity in vivo (SPINA).
You could make a new appointment but not for thyroid, rather for the symptoms you've got and approach it from a different angle. List your symptoms and ask the doctor what is causing them. Explain how much its affecting your life and ask what tests and exploration they can do to explore the underlying cause or causes. If it's not your thyroid, there must be another cause. Could be inadequate vitamin levels or another condition. You never know, the doctor might decide its less bother to increase levothyroxine by 25mcgs
Point out your extremely low Ft4 and spiralling increase in hypothyroid symptoms
Ask for 25mcg increase in dose to 75mcg as “a trial “
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
It is recognised that a proportion of patients may have persistent unexplained symptoms despite adequate replacement using levothyroxine, evidenced biochemically by serum Thyroid Stimulating Hormone (TSH) being between 0.4 - 1.5mU/L.
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
Has your GP got a system where you can submit a form with a description of the problem? It might not be obvious from the website but ask receptionist. If all else fails write a letter to practise manager. Clearly something is wrong to have constant headaches. Even if non urgent there should be some mechanism to get an appointment during COVID.
Perhaps focus on the symptoms and how debilitating they are. Reserve judgement on the cause of symptoms as it could be low vitamin D or some other reasons.
Separately, I would ask why your FT4 level is nearly at the bottom of the range whereas most people on levothyroxine have an FT4 level at the top or slightly above range unless their TSH is elevated so something isn't functioning as it should. Therefore it needs investigating . Also ask what the doctor meant by undetectable TSH in previous reading. Ask exactly what it was with the lab range.
It might be worth asking for a copy of your results when diagnosed hypothyroid to find out what the biochemical basis was for the diagnosis. Also check if thyroid antibodies have been tested and what were the results?
In 2000 I lost 2 stone in a month, had palpitations swollen ankles and dreadful shakes. Bloods showed hyperthyroidism. I took Carbimazole for 2 years with regular blood tests. Eventually it took me down to hypo. The then GP stopped all meds. In 2007 had a blood test for something else and was told I was hypo and was put straight on 100mcgs Levothyroxine. Was on that until 2012 when I had rapid weight gain and severe fatigue. Had new GP as I’d moved he upped me to 125 mcg per day but bloods six weeks later showed suppressed TSH we eventually agreed I would be on 100, and 125 every third day which was fine until last October when we moved house new GP and as I described in my last post 3 months ago. To get results from when I was first diagnosed would be asking to go back 20 years which I doubt they’d want to do.
If they have the results then you're entitled to copies by law. They belong to you as they're your results. Ask reception to organise it for you rather than the GP but make sure they include lab ranges with each result. Alternatively if in England the register for online patient access to your results. Again, reception can organise it. Sounds like you definitely need antibodies results or get them done now.. You need TPO, TgAb, TSI and TRAb doing. The first 2 are to rule out Hashimotos thyroiditis and the second 2 to rule out Graves disease. When you have results, you'll then know what type of thyroid condition you have and how to proceed. You may need a referral to a thyroid specialist as the second 2 antibodies tests are not done in primary care in the UK. Make sure it's a thyroid specialist not a diabetic specialist.
Thank you. I had antibody tests done in August by Blue Horizon but they were ok. I live in Wales so things are a bit different here. I am ringing the practice tomorrow and will ask for a telephone conversation with a GP. I have also requested a list of thyroid specialist endocrinologists from Thyroid UK. I may see if I can have a private appointment. I really need to get to the bottom of it, as I am not enjoying life at present.
What antibodies tests were done? Did you have TSI and TRAb to rule out Graves disease? Perhaps you only had the antibodies done to rule out Hashimotos?
Truth be told I had the antibody tests that Blue Horizon did, I think it was only for Hashimotos. I have no idea what sort of thyroid disease I actually have!
Just to say, if you're in the UK, there was something badly wrong with Levothyroxine in 2012. A lot of people had problems which forced MHRA to do a review. It could complicate your understanding of what was happening to your thyroid and may account in part for changing thyroid levels. The 2012 review of levothyroxine is on the Internet and your doctor would have access to it. Levothyroxine was reclassified in the BNF.
The point is that whatever happened in the past, from this point on you need clarity on whether you have a thyroid condition or not and what sort of thyroid condition. As you have been hyperthyroid in the past but you don't have antibodies for Hashimotos then you could ask for an ultrasound to assess thyroid health and get tests for Graves disease to rule out antibodies for Graves. That will help to clarify the situation. There are other thyroid conditions that can cause hyperthyroidism besides Graves disease but I don't know enough about them to make further suggestions. Your GP could be right about reducing levothyroxine but you need a much better explanation and understanding of what is going on in order to help yourself and work together with the GP to get your health back on track.
Thank you for this information. I had no idea there had been a review of Levothyroxine in 2012. What was the outcome and what is the BNF? I am finding all of this rather complicated and confusing!
The BNF is the British National Formulary. It was discovered that the potency and efficacy across different brands of levothyroxine was highly variable. The dissolution tests applied were inadequate. Even batches within the same brand varied and tablets lost potency towards end of shelf life. Basically, they were not bioequivalent between brands or even batches. Also not all levothyroxine was reliably bioavailable so you could have been absorbing much less than stated on packaging. There was as much as a 50% difference between some brands on the 100mcg dose and a little less difference in other dosages.
The outcome was that levothyroxine was reclassified in the BNF which meant a different dissolution test must be applied to check efficacy and manufacturers must comply with much more stringent manufacturing methods to ensure the tablet ingredients do not degrade during production, affecting bioavailability.
Bet your doctor doesn't know this as mine didn't. He might be more sympathetic or helpful if you bring it to his attention.
I tried that and even took my husband to back me up. The GP told me he would be struck off if he gave me any Levothyroxine because my TSH was within range. He was not bothered that my hair was falling out and I could hardly get out of bed every day. Most doctors stick to NHS guidelines unfortunately. I then decided to take my own health into my own hands.
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Battling with the Doc!
How to take Levo before a blood test when I split my dose, and feritin level
Is it absolutely vital that T4 stays within range?
I think my daughter may have a thyroid problem, she has finally had an initial blood test which showed raised prolactin and a TSH of 2.5
GP Dismissed Dio2 Test Result
