With my TSH down from 30 to 3.5 and stuck there for the past year, I was encouraged by this board to seek a higher dose from the GP.
With great reluctance I was given 25 more for a 3 month trial period and to revert back if this made no difference.
Well 3 weeks in after the dose increase, I can only say that subjectively this feels a far bigger improvement than the dose increases from 25 to 50 and 50 to 75.
I have just completed the hardest running session in 3 years and feel like I still have loads of energy in reserve.
I will get a new blood test in the next few months and confirm hopefully TSH has come right down.
So my simple plea to NHS is to give automatically higher doses to patients until TSH is below 2 as advised by a number of experts on this board.
I am not the first and I won’t be the last but it still needs to be said to all NHS staff dealing with patient thyroid issues.
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Danielj1
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Sorry, but that baffles me even more as the feedback I had to the earlier thread was the NHS do have a guideline based around TSH 2, I am not sure I have seen NHS references to one - has this been raised by anyone with NHS that the guidance of 2 may again be too high.
My concern was NHS sticking to their published rules rather than the rules themselves might be wrong - WOW!
I don’t think I would have a cat in @@@@s chance of getting below one on this basis ie if my new TSH was near 2, I have visions of the Dr saying that is your lot mate...
No, 4.9 wouldn't be adequate dosing given that you're hypo when your TSH reaches 3. And over 2 would mean your thyroid is struggling. Are you serious about that?
How you feel is definitely key ... when reporting ill to doctors, Serum TSH 1.6 is a consistent starting point of Hypo symptoms for me. However I remain symptomatic with TSH suppressed below 1, but that's another story currently up for debate.
There's absolutely not guarantee that you will feel good just because your TSH is below 1. The TSH doesn't make you feel anything. And your TSH can be suppressed (0.1) but your FT3 still too low. It's low T3 that causes hypo symptoms.
TSH isn't a thyroid hormone. Read what this thyroid specialist states - about half-way down the page about thyroid hormone treatment. It's no wonder he cannot take on any more patients.
It's a pity that we have to do our own research but when not improving we have to try some options and due to having internet access we can find some support/information etc
I wasn't talking about NHS guidelines. I was talking about real life.
But, do not confuse guidelines with rules, they're not the same thing. Guidelines are saying; this is possibly the best thing to do. Rules say: you do this or else. With rules you have no choice, but guidelines allow the doctor to use his discretion.
How long did it take to get your TSH from 30 to 3.5?
I had a blood test on 4 Oct. My TSH was 48.7 and FT4 was 7.8, so I was told that I have hypothyroidism.
I started taking 50 mcg levothyroxine about 15 days ago and I will have another blood test at the end of November.
I am not sure I feel any better since I have started taking it. Sometimes I feel even more tired than I felt before, particularly in the mornings. I know it will probably take a while, but I was wondering how long this could be .
I would appreciate any information or advice. Thank you.
Bloods should be retested 6-8 weeks after each dose increase (or brand change) in Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Thank you. I will have my next test at the end of November. At this point I assume the doctor will increase the levothyroxine I take. I will also ask if possible to have B12, Vit D and the rest tested.
Unfortunately, there's no quick fix. We start on a dose of 50mcg (if frail etc it would be 25mcg) and after a blood test we should have an addition of 25mcg every six weeks.
There's no quick fix as we're dealing with hormones. and some of us take longer to get to a dose which eases all symptoms.
Levothyroxine is also called T4. T4 is an inactive hormone and has to convert to T3 which is the Active one and we have millions of T3 receptor cells in our bodies. The brain and heart needs the most.
You take levo when we get up and take it with one full glass of water and wait an hour before eating. Food can interfere with the uptake of the hormones. Some prefer a bedtime dose, in that case you miss bedtime dose and take after blood test and night dose as usual.
Blood tests should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and blood test.
Hypothyroidism affects us because our body isn't producing the hormones which runs our whole metabolism, from head to toe and we have millions of T3 receptor cells.
Millions do very well on levothyroxine and wont be searching the internet for help/advice. Some don't and they wonder why as they're taking prescription medications and don't feel much better. They then search the internet.
Quite a number of doctors, when our TSH reaches somewhere in the range think we're on a sufficient dose and don't increase dose.
The aim is to relieve all clinical symptoms and we feel well again.
Before levothyroxine was invented, there were no blood tests at all. We were given NDT (natural dessicated thyroid hormones made from pigs' thyroid blands) and had small increases in NDT until we felt well again.
Unfortunately we don't recover straight away and are still symptomatic. Due to the fact that it may have taken years for us to be diagnosed, slow and steady increases eventually can relieve all symptoms.
You should now have a blood test every six weeks (make appointments well in advance so you get the very earliest appointment) fast (you can drink water) and allow a gap of of 24 hours between your last dose of levo and the test and take it afterwards. The aim is a TSH of 1 or lower (many doctors think 'somewhere' in the range is fine (even at the top of the range).
This procedure keeps our TSH at its highest and it drops throughout the day and could stop GP increasing our dose.
Ask also for B12, Vit D, iron, ferritin and folate to be checked at the same time as all need to be optimum in order for levo to convert to T3. Levo is an inactive hormone and has to convert to T3 (liothyronine) and it is T3 that is needed in our millions of T3 receptor cells.
Thank you. I think my test should be around 15 November, so I will try to book well in advance. I will try also to book a doctor's appointment, as I did not have one after my first test. I had the test followed by a phone call from the surgery to inform me that there was a prescription for 50 mcg levothyroxine for me. That is why I am trying to educate myself reading online and asking for advice here.
Hopefully next time I will be tested for vitamins deficiencies also. Last time I only had TSH and Free T4.
To save money I suppose. Maybe it is cheaper if they just test T4 to start with and later decide whether to test T3 also. If your T4 is within range and you still feel unwell, maybe the doctor would prescribe T3 test to establish whether converting T4 to T3 is the problem. As many people here say, GPs in general seems not to be very good treating in thyroid conditions.
From what I have read here, you would think that it is rather important to have T3 tested also. So I am thinking, if GPs are restricted, the reason must be cost and saving money. What else could it be?
They don't want to test T3 and believe TSH and T4 is sufficient. Why is this? I don't understand as T4 is inactive and T3 active and it is T3 that's needed in all our T3 receptors the brain and heart need the most.
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
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
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, best not mentioned to GP or phlebotomist)
There are over 102,000 members on here......clearly ........current guidelines are utterly inadequate
Thousands of people left on 50mcg or 75mcg for months/years with terrible symptoms and no quality of life
There are over 2 million people in the UK prescribed Levothyroxine. It's the most prescribed medication. .......yet many medics seem clueless on how to read a blood test or get dose optimal
A simple plea would be for the NHS to treat the patient till they are not symptomatic. Your TSH result was a good indicator that something wasn’t right but a better way of diagnosing and treating hypo patients would be FT4/3 and symtoms. My TSH is 0.003. When it was around it just u set 2 I was very very unwell. Your journey has only just begun as it did with all of us we thought it was all about TSH and believed the doctors knew what they were talking about but no, they know nothing.
I have contacted my local MP about Doctors asking for a full thyroid function test and the labs only doing TSH because it is within range. She has decided to take it further and hopefully the Health Minister she has contacted about this might make some changes .... we just need to wait and see what happens.
I was thinking exactly the same about contacting my local MP . I believe we should stand up to these doctors and endos who refuse to allow us the T3 and / or the NDT and allow for more testing and understanding the results. to be done. I agree with you most definitely. Maybe others will join you? Please let us know what's happening with this move of yours?
I must be honest based on what I feel now, I Have 99%. Of my old life back. In fact in a number of ways adding in all the supplements I am probably better off than I was 5 years ago.
So I won’t be pushing for any more Levo, if I can hold onto this level of improvement I will consider I have been incredibly lucky.
Without this board it does not bear thinking how things would have ended up !
And there in lies the problem. Us hypos are just so glad to get a % of our lives back when it is within the professionals power to give us ALL of our lives back 😞 That’s what replacement medication is supposed to do. Don’t be satisfied with 99% go for 💯 🤗
I have had to let go of just about every aspect of my old life I held dear and BTW I am a bloke.
No alcohol
Boring healthy fruit and yogurt breakfast
Salad with everything
6 month liver detox with black cumin seed oil to boost T3 conversion
“Collagen “imported from cattle in Argentina
The list sadly goes on and on ...
Trust me just about every supplement talked about in all the various journals and books I ended up trying and disposing of a number of them ...
All I will say is the single most important supplement of the whole lot has turned out to be taurine... and as far as I know this hardly gets a mention outside of the lady who is a pharmacist who wrote a famous book on thyroid health ....so you end up having to trust your own judgement try something new and chuck it if it does not work
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