Well having tried just about all the alternative approaches available to man, I feel I have addressed most/all of my nutritional deficiencies and yet TSH has not moved a jot in the past 12 months.
I feel pretty well now, super low HR is back up to a higher level, constant sense of cold gone, stomach working OK post taking 500 magnesium citrate and D and B and selenium and zinc and I sleep much better.
A doctor would probably say - for a 50 something what on earth have you got to be worrying about.
Our GP will only increase from 75 to 100 if TSH goes over range at 5.
So I am in a holding pattern.
I may never know what all the good souls on this thread seem to achieve and that is a. TSH under 1.
I will have to learn to live with this.
If my GP is anything to go by, there must be many other in the same boat.
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Danielj1
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How can you just give up so easily? Your doctor is 100% wrong not to increase your levo with a TSH of over 3 - you are still hypo. When on thyroid hormone replacement, the TSH should come down to 1 or under. And taking vitamins and minerals is not going to achieve that, you need an increase in dose.
I would imagine your Frees are pretty low, but I suppose he doesn't test them. If it were me, I would trying changing my doctor. If that doesn't work, I would get private labs done, and then by my own levo.
A doctor would probably say - for a 50 something what on earth have you got to be worrying about.
Only a very ignorant doctor, like yours, would say such a thing.
I had a decent chat over the phone - the NHS guidelines are stated as above 5 is a problem and lower than 5 OK - all patients at the practice are being treated the same. I have a further phone call next week and will insist on an increase to 100!
Those NHS guidelines refer to people who are as yet undiagnosed, not people on thyroid hormone replacement (levo). That changes everything. Doesn't matter if he mistreats all his patients, why stand for him mistreating your? You could, actually, strike a blow for the greater good of all his hypo patients.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
and Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine 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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You say you are feeling pretty well now. Do you have results for FT4 and FT3 as well as TSH? It would be interesting to see where your actual thyroid hormone levels lie (FT4/FT3 - TSH is not a thyroid hormone, it's a signal from the pituitary asking for more hormone when it detects there's not enough)
It's not all about the TSH but the fact that once diagnosed the aim is a TSH of 1 or lower - not 'somewhere' in the range. The Frees are rarely tested and they are FT4 and FT3 and they should be towards the upper part of the ranges.
As these links are not from the UK, doctors wont take any notice but we have to inform ourselves in order that we can restore our health.
Give surgery a copy but they still may not co-operate with you when you say you need a TSH of 1 or lower once diagnosed and the aim is a FT4 and FT3 towards the upper part of the ranges. Rarely are the latter two tested but we can get a private test if we wish from one of the recommended labs.
Many thanks and I will go back with this information.
I will do my utmost to get TSH down under 1 - I have very diligently followed the advice here on supplementation and it has made a huge difference. Having said that, many here report they feel
Much better once TSH is less than 1, so perhaps I will also gain further health benefits from better thyroid dosing too.
I find it really odd that a simple fact over a TSH level can be a matter for debate - the gap between 2 and 5 is quite large.
The lady I spoke to felt I was worrying. Unnecessarily over my TSH levels so I may face some opposition to them adapting a change of tack over thyroid treatment advice.
You can NOT go by the TSH alone when deciding if you are adequately treated on thyroxine (or any thyroid drug, for that matter!) You need to have both your free Ts - free T3 and free T4 - tested together. The TSH can have some diagnostic value when deciding if you are hypo- or hyperthyroid before you're put on treatment but, once on thyroid hormone replacement, it tells us very little, especially on its own. If on T4 only, you need to make sure you convert enough of it to FT3 - the truly active thyroid hormone. If not, you remain hypothyroid and symptomatic, regardless of your TSH.
Good converters - that is, people who do well on T4 only drugs such as levothyroxine - usually have FT4 levels close to or at the upper normal limit (see article linked to above) along with a TSH below 1 or even slightly suppressed. They also need their FT3 levels tested along with FT4 as that is the only way to know who well they convert T4 to T3. FT4 on its own is also pretty useless as it does not tell us anything about how well you are converting a storage hormone to its truly active form. Many people with Hasimoto's are poor converters and nutritional deficiencies can also slow conversion down.
They are idiots if they are referring to someone who has already been diagnosed as hypo, where the aim (unknown to all doctors in the UK it woud appear) is a TSH of 1 or lower.
TSH (thyroid stimulating hormone) is from the pituitary gland and rises to try to flag the thyroid gland to produce more hormones. Many on the forum source their own as most doctors seem to think that because their guidelines state that we haven't to be diagnosed until TSH reaches 10 (in other countries it i 3 with clinical symptoms) that once we are 'within the range' that we're on a sufficient dose and they disregard any symptoms as due to something else.
Strongly suggest you get FULL Thyroid and vitamin testing privately
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
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
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Come back with new post once you get private testing results
Meanwhile email Dionne at Thyroid Uk for list of recommended thyroid specialists. You may need to insist on referral to endocrinologist if GP refuses to increase dose
No, had strong coffee before test in the morning plus breakfast.
Plenty to think about - thank you.
One query though - if FT3 and FT4 near top of range and TSH still poor eg around 3 how much health risks are you running by TSH remaining too high ie above 2. I am still worried that I will be in this category - earlier tests showed decent FT3/4 from a couple of years ago.
The TSH was originally intended to be used as diagnostic test to test if a patient has hypothyroidism.
Once on thyroid hormone replacement, the name of the game is the relief of the patients symptoms, this generally occurs as the TSH drops down to around 1, or maybe lower, and the T4 and T3 go up in their ranges, a bit like a seesaw. The patient should be assessed with a further blood test every 6/8 weeks until well, and without symptoms, ensuring both T4 and especially T3 are kept in range.
I know it doesn't happen, that's why we are all having to pay for our own blood tests now. Sadly it seems, neither T3 nor T4 are deemed of any importance - it's a cost cutting exercise at our expense. I think it cost around a pound for each blood test undertaken, and my hospital lab charged me back £34 something for my T3 and T4 blood tests to be taken.
Thanks pennyannie -you use the words “relief from thyroid symptoms” - so far this has mostly been from all the non Levo supplements I have been taking. If I had to put a percentage on it I would credit levo with. 30% and magnesium and the rest 70% - not what the NHS wants to hear I suspect ....
Would love to get to TSH under 1 if at all possible to see what this actually feels like - I suspect I have lived the vast majority of my life outside of this range ...
I don't think the TSH in itself makes you feel anything different - it's where you're T3 is within the range that gives you the relief of symptoms.
The body runs on T3, not a TSH, and the body needs to convert the prohormone Levothyroxine into T3 the active hormone, for you to feel any difference.
Yes, conversion can be enhanced by various supplements.
Ferritin, folate B12 and vitamin D are core strength vitamin and minerals that also need to be optimal in their ranges to assist in the conversion of Levothyroxine.
Maybe get some bloods done privately, buy some extra T4 for yourself, and give yourself a trial, and see how you go. It's got to be better than being in a permanent " holding pattern " you're not an aeroplane, are you.
You could then become the local sooth sayer / saviour and become a " hero " !!!!
This is a link to the Nice consultation on thyroid disease released earlier this year. I believe this is an output of UK GPs and other experts.
One of the comments in it suggests GP community is over reliant on metrics and should transition to treating individuals and symptoms. Statistical ranges based on averages have limited use.
Perhaps be prepared to share relevant points in this study along with your symptoms and metrics versus also the risks of increasing a dose for 3-6 months. Try to create a compelling case that its hard to say no to.
Just to share an experience, I did make a case with my practice's pharmacist to increase my dose and she worked to agree this with my GP as a trial. I was convinced a higher dose would help but it did not and I ditched it after 8 weeks. I turned to a massive increase in exercise (tennis for me) and as much sunlight as could get. Either/both seemed to have worked well, but Ill know for sure one through another winter.
At diagnosis I was 4.6 on range 0 to 5. This was considered subclinical and was told to come back in 6 months but I fought hard based on the symptoms I had and was put on Levo. (I had ground to a halt with fatigue and brain fogginess in addition to range of other symtoms).
Over year I got it down to 1.7 on 25mg Levo a day but bounced up again over last winter (2.5 I seem to remember). Again in Spring I had a relapse where I tried to up my dose but did not work.
My improvement may be coincidental with summer daylight so I am still on 'self-trial' with current results and the coming winter will be interesting but I feel much better. I went for a radical change and now play tennis 4 times a week and have a gym PT. I have also given up alcohol which I released small amounts were wiping me out for days at a time. FYI many people take VIT D supplements in winter, some up their dose, but naturally dont do either without proper consultation.
Next I will look into diet but I am going to get full tests first. I found a private GP in Suffolk who specialize in Thyroid do the full bloods range at reasonable cost although other exists which have been referenced on this site before (Medichecks / Blue Horizon).
Do bear in mind that any change in dose can require to an adjustment period, you may need time to stabilise again and may experience range of hypo and hyper symptoms in the meantime. It can be disconcerting to get hyper symptoms after dose change and if any doubt see your GP. I went a bit bonkers after my last dose change culminating in some rather bizarre (and funny) incidents so look out for this.
However also bear in mind that a dose increase at this time of year might just mitigate for loss of sunlight as we head in winter and you might not see a huge change esp. as you say you feel quite good.
I gave you a link to Paul Robinson above on understanding lab results, Have a read, I suspect your view on TSH results will change. good luck.
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