Hello everyone I was recommended to join this forum from a member on the PA forum. I was diagnosed with hypothyroidism 20 years ago in my 40s after presenting with carpal tunnel syndrome. I was started on 50mcg levothyroxine and my symptoms mostly cleared up My GP was happy with my TSH and left it at that. My level has stayed round that level ever since but I have complained to various GPs for years I still felt tired, cold and lethargic. None would listen and said they would not overmedicate me just because I wasnt happy. Recently I sent a sample to Medichecks. The results came back as my TSH tested at 3.63 other results with ranges in brackets free T3 was 4.76pmol/L (3.1-6.8) , free thyroxine 19.5pmol/L (12-22) Thyroglobulin 15.4kIU/L(less than 115) Thyroid Peroxidase Antibodies 41.2kIU/L ( less than 34) could suggest Hashimotos. I have never been told by any clinician about these antibodies or I might have Hashimotos in all the 20 years.
The Medicheck Doctor suggested that modern approach is if you are still symptomatic while on levothyroxine to increase the dose until you end up in the bottom half of the TSH range. Healthy people usually test in the bottom half and the USA tend to have a narrower range than the UK. I found quite a few scientific studies that back this up. I am only on 50mcg Levothyroxine when the average is a 100. My current GP of course said no. He said he didnt recognise the name of the Dr on the report? He had never heard that about the lower half of the scale and it was nonsense. He also said that TSH level goes right through the test range during the day? And he had more qualifications than that Dr? There was a trainee doctor there as well so I felt rather humiliated.
My TSH tested at 3.63 other results with ranges in brackets free T3 was 4.76pmol/L (3.1-6.8) , free thyroxine 19.5pmol/L (12-22) Thyroglobulin 15.4kIU/L(less than 115) Thyroid Peroxidase Antibodies 41.2kIU/L ( less than 34) could suggest Hashimotos.
I doubt my GP will change his opinion. I now have a recurrent sore throat and hoarse voice losing it from time to time.
Much obliged John
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john159
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Welcome to the forum and I'm sorry that you are experiencing what a lot of us here have to put up with from doctors who don't understand how to treat hypothyroidism.
The aim of a treated Hypo patient, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. You are obviously undermedicated to have such a high TSH for a treated Hypo patient, you need an increase in your dose of Levo - 25mcg now and retest in 6-8 weeks, further increases will likely be necessary. You probably already realise that 50mcg is a very small dose, it's a starter dose and an average dose is 100-150mcg.
He said he didnt recognise the name of the Dr on the report?
Does he know the name of every doctor in the UK? I bet he doesn't know the name of my GP either!
He had never heard that about the lower half of the scale and it was nonsense.
So he doesn't know much at all about treating hypothyroidism. Shame on him! Isn't it their job to keep up to date?
He also said that TSH level goes right through the test range during the day?
That is correct to a certain extent, TSH does vary throughout the day but not necessarily right through the reference range. TSH is highest around midnight and lowest around 1pm. Here is a graph which shows this (first graph in the picture):
By the way, when having thyroid tests, always test as early as possible in the morning, no later than 9am, before anything to eat or drink except water. This gives the highest possible TSH which helps if you are looking for an increase in your dose of Levo or to avoid a reduction. Make sure all your tests are done under the same conditions every time to be able to compare them accurately.
And he had more qualifications than that Dr? There was a trainee doctor there as well so I felt rather humiliated.
He was just trying to make himself look important in front of the trainee doctor, they all do it. You can always refuse to have a trainee doctor present, it's entirely your choice.
I now have a recurrent sore throat and hoarse voice losing it from time to time.
I get a hoarse voice if I am undermedicated, it's very common.
Here is some information that you can discuss with your GP about where TSH should be:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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 this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
However, once diagnosed TSH should not be used to adjust dose as it's not a thyroid hormone and doesn't give a picture of thyroid status. FT4 and FT3 are the thyroid hormones, FT3 being the most important test and the one that tells us if we are overmedicated, undermedicated or have a problem converting T4 (the storage/pro hormone) to T3 (the active hormone which every cell in our bodies need).
I have never been told by any clinician about these antibodies or I might have Hashimotos in all the 20 years.
Hashi's itself isn't the problem, it's autoimmune thyroid disease and the most common cause of hypothyroidism. Hashi's can't be treated, it's the resulting hypothyroidism that's treated.
However, most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Hi SeasideSusie thank you very much for that wealth of info. The GP concerned is my designated one and I am told to see him in preference to the others . I dont think he will change his mind. 3 years ago I developed breathing problems, wheezing and struggling for breath. I went to see him twice and on the third occasion he checked me into Hospital with suspected unstable Angina. Spent the night there in a ward with some very sick patients one who kept saying he would kill himself. In the morning saw the Consultant Cardiologist who told me I was fine and that he was disappointed with my GP as I didnt have any of the symptoms of unstable Angina. A couple of weeks later had a really bad attack, saw another GP who diagnosed Asthma and put me on a preventer inhaler. That stopped the attacks completely.
I’ve never heard of a surgery telling patients they should try to get appointments with their designated GP . I don’t think I’ve ever met mine. Maybe ask to see a different one?
OK let's get down to business. First, if you are on T4 and with little or no thyroid working, the relevant TSH range for proper treatment has been carefully studied: here it is:full text links:
Thyroid 2017 Apr;27(4):484-490. doi: 10.1089/thy.2016.0426. Epub 2017 Feb 6.
Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy
The TSH range for healthy people is NOT the same as for those who take thyroxine. For patients with no thyroid, the range is as the above authors quote. For those with some working thyroid it is in between but still not the healthy range. TSH = 3.63 is way above what is satisfactory therefore. The outcome is: diagnose by symptoms first, biochemistry second - that is, how do you feel is paramount above any amount of chemical numbers.
If patients up against a brick wall took this paper and its conclusion to their GPs and said simply "Read it and come back to me" perhaps some GPs with open minds might take it in.
Strongly recommend you see different GP or go see a recommended thyroid specialist endocrinologist
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% 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
Looking at your forum name ....are you male?
Breathlessness can often be hypothyroid symptom....or low iron/ferritin
Low vitamin levels extremely common if left under medicated and still hypothyroid
guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually 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.
Thank you to everyone for their great assistance. I have never been told that mine should be a fasting blood test and the doctors often schedule by test after 9am. I have now been taking my levothyroxine in the evening which allows the maximum time for my stomach to be empty. Dont know if this is correct if it might clash with the body's natural cycle? But I do feel a bit better that way. 3 Drs at the surgery all concur that my TSH level is OK so I dont expect a change any time soon. My condition was made difficult last month when I was diagnosed with AFib. Another GP had me take a thyroid test in case I was on too high a dose of levothyroxine which was causing the AFib. Of course when that came back at 3.6 it was accepted as OK. I was on Atenelol for years for hypertension and then swapped to Losartan. On Atenelol my pulse was about 48bpm and then on Losartan it increased to 60bpm. I have been placed on Bisoprolol 2.5mg now for the AFib but on an evening my pulse dropped to 44 and BP 120/60 and I felt faint. My pulse and BP were checked in the Surgery and they said it was OK.I have started taking half a tablet of Bisoprolol and my pulse has changed to 54 and I feel a lot better. One of the links I have been sent states bradycardia is a symptom of hypothyroidism. I will ask my GP next week but am not very optimistic. I weigh 82kg having been on a strict diet to reduce from 94kg. That would mean I should have had a dose of levothyroxine of around 130 and 150 respectively.
I have now been taking my levothyroxine in the evening which allows the maximum time for my stomach to be empty. Dont know if this is correct if it might clash with the body's natural cycle? But I do feel a bit better that way.
In fact .. i'm pretty sure it is closer to the body's natural cycle than taking Levo in the morning .. or at least it is if you take it late in the evening.
TSH rises to peak (somewhere ? in middle of night ) ,and i think this peak is followed by a peak in thyroidal T4 a little while later. So if it takes about 4/5 hrs for the swallowed Levo tablet to reach a peak in your blood then you get similar time of peak T4 to natural production , albeit all in one dump rather than in pulses throughout the day.
I had some graphs of this natural circadian rhythm but cant find them now. sorry.
Re. the A Fib (which i'm sure they would be blaming on your Levo dose if your TSH happened to be lower).....I don't know if you have already been given this link , but it is written for 'GPonline' by a 'specialist registrar in cardiology' and a 'specialist registrar in endocrinology' (Liverpool) in 2010 and did contain reference to Afib if i remember correctly , so may contain something helpful . healthunlocked.com/thyroidu....
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
Strongly recommend getting FULL thyroid and vitamins tested
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 and low vitamin levels extremely common if been left incredibly under medicated as you have
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
TSH tested at 3.63 other results with ranges in brackets free T3 was 4.76pmol/L (3.1-6.8) , free thyroxine 19.5pmol/L (12-22) Thyroglobulin 15.4kIU/L(less than 115) Thyroid Peroxidase Antibodies 41.2kIU/L ( less than 34) could suggest Hashimotos.
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Absolutely essential to also test vitamin D, folate, ferritin and B12 at least annually
Low vitamins tend to lower TSH
Low ft3 tends to lower vitamin levels....low vitamin levels tend to result in poor conversion of Ft4 to Ft3
With Hashimoto’s gluten intolerance is extremely common
Always test for coeliac before considering trial on strictly gluten free diet
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