Thyroxine dose evidence and spray vitamins - Thyroid UK

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Thyroxine dose evidence and spray vitamins

Saz88 profile image
17 Replies

Hi all two questions. I am on 50mg thyroxine and on latest testing my TSH was 4.26, all other thyroid tests normal. When I rang to get results ( couldn’t get to chat to GP) receptionist said Gp said levels fine and to cont on current dose. So thinking I may have a row , is there any paper/ clinical guidelines etc I can take that says levels should be more around one??

Also wondered thoughts/ experience of people who have used mouth sprays to increase vitamin D and or B12 ? Another thing I need to get tested as last time D way under lower bracket and vitamin B12 180..... noted have felt a bit better taking.

Thanks as ever 😊

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Saz88
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SlowDragon profile image
SlowDragonAdministrator

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

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.

xeena profile image
xeena

Hi there - i was using spray B12 - but Medichecks advised me not to use them and i told them that it was one of their doctors who told me to use them but they said not to - so i stopped - sorry i cannot be of any further help - but everyone on this site is really very helpful and someone will know. I wish you well.

greygoose profile image
greygoose in reply to xeena

Do you really think that Medichecks doctors know what they're talking about? They know no more than the average GP - who knows nothing about hormones or nutrients - because they are just average GPs. They have no special training in these things. The important thing is: how did you feel taking the B12 spray? Did your level rise? :)

xeena profile image
xeena in reply to greygoose

Hi there - i have been having private blood tests with Medichecks since 2016 and i have had my suspicions about them as they keep asking me if i have got gout - well surely they should know if i have from my blood tests - i also had a private blood tests from another private GP and he also asked if i had gout - it beggars belief. I think these private blood testing companies are all about the money and not the patient. Thank you for your help it is really appreciated as it is from everyone who has been kind enough to try helping me. Keep well - bless you.

MaisieGray profile image
MaisieGray in reply to xeena

To be fair, asking if you have gout is a perfectly reasonable question, if your blood test result indicates that you might have; because a blood test is one possible indicator but isn't necessarily conclusive - some people have elevated levels of uric acid and/or creatinine but never experience gout. If this was the case with you, it's right that they can't definitively assume you have gout simply from a blood test alone, and you might need different testing such as a joint fluid test, X-rays, ultrasound etc to reach a diagnosis. If they see a test result that flags up possible gout and didn't raise it with you, they would be failing in their care, which even at arms' length as it is with the Labs, is still important.

xeena profile image
xeena in reply to MaisieGray

Thank you for the reply. I do apologize for my wrong statement about gout - i thought that they would know from a blood test - my GP has never mentioned it to me - i just have to put up with the pain as i do not know what to take for it.

in reply to MaisieGray

Is there a connection between hypothyroidism and gout? Don't think I've seen that in any list of symptoms?

MaisieGray profile image
MaisieGray in reply to

I think it depends upon where you look. A 2001 meta analysis by Giordano et al concluded Our findings confirm the data in the literature concerning the high prevalence of hyperuricemia and gout in hypothyroidism. It shows that hyperthyroidism can cause a significant increase in serum uric acid, as well, although lower than the hyperuricemia due to thyroid hormone deficiency. Conversely a 2017 population-based case–control study by Bruderer et al, concluded This large observational study does not provide evidence that hypothyroidism or hyperthyroidism, irrespective of treatment, is associated with a clinically relevant increased risk of developing incident gout. There may be an exception among patients with newly diagnosed and treated hypothyroidism. But - 78% of the study population was male, which seems very likely to have skewed the findings I'd guess.

So I think you'd need to look further for a definitive answer.

greygoose profile image
greygoose in reply to xeena

No, I don't think they're all about the money. They provide a much-needed service and you pay for it, granted. The problem is the doctors' comments. We all know on here that the vast majority of doctors know nothing about hormones and nutrients. Short of training their own doctors in these things - and that would put the prices up enormously! - where are they going to find doctors that are experts in these things and prepared to work for them? Experts tend to have their own practices. And, don't forget that these companies do a very wide range of blood tests, they can't have experts on everything to make comments.

We are fortunate in that we understand our results - or can ask here. But, there are a huge number of people, doing different tests, that don't have a clue how to interpret them. So, for those people, the doctors comments are possibly helpful. But, for us, they're just not worth having, I'm afraid. That's just the way it goes. :)

xeena profile image
xeena in reply to greygoose

Hi there - i am sorry for my last statement - i naturally thought that they would know as i thought that they were proper doctors who would know everything - but in saying that they would have to be super humans to know everything and as i have come to know now that this is the most helpful site ever and i thank everybody for all their help. Bless you all.

greygoose profile image
greygoose in reply to xeena

They are 'proper' doctors. But, they're not endos. And, as a lot of us know, even endos don't know much about hormones! They are just GPs, and a GP's knowledge is very limited in many ways. I've met GPs who didn't seem to know very much about anything! lol

xeena profile image
xeena in reply to greygoose

Hi - yes i know what you mean - that seems to be right for all the GP's that i have ever encountered - once again a big thank you for all your help.

greygoose profile image
greygoose in reply to xeena

You're very welcome. :)

CapnM profile image
CapnM in reply to xeena

Attitudes to GPs are changing as we move through generations,

For example my mother thinks that GPs do know everything and are the only source of (primary) healthcare. But then she grew up in the 50s when they had a privileged position in the community (for good reason) and were the only practical source of knowledge. Also the volume of healthcare information allowed GPs to have relative superiority in knowledge.

Right now we are in the information age where content and forums like this are massively changing our knowledge and consumption of healthcare along and facilitating an explosion in healthcare knowledge.

By the time my nephew accesses healthcare he will be probably talking to artificial intelligence with support 'as required' by a humans.

Making this point as it pays to have an open and inquiring mind with GPs. They do have vast knowledge, experience and make a massive contribution to society but they are only human and are constrained by their training, experience and service model. The GP as primary gatekeeper to healthcare is probably a dying business model as model will drive towards centers of excellence and use of technology.

p.s. I bought my first Vitamin D spray from Betteryou today, I took a dive last winter and confident it was lack of sunlight. I am reducing from 4.5 TSH to around 2 over last year on only 25mcg Levo a day. I tried 50 but it made me a bit hyper and bonkers. So I am trying things around it such as sunlight, vitamins and exercise. Rather than upping it. I'll know by next year. good luck.

Lovecake profile image
Lovecake

I use the vitD spray from BetterYou (the one with k2).

It is one of the few ways for me to keep my vitD at a reasonable level.

I also take a B complex (as recommended on here). But decided to add one spray of the BetterYou B12 for a few weeks.

Just had my B12 checked and it’s the highest it’s ever been recorded.

So I would say yes, the B12 spray works.

According to BetterYou, the pernicious Anaemia society recommend their spray as a boost to people who have injections and start struggling when their levels drop towards the end of their time between injections.

xeena profile image
xeena

Hi there - yes i did try them but they did not seem to do anything for me - i am glad that they help you. Wishing you well and a big thank you for your input.

Saz88 profile image
Saz88

Hi thanks all for this information. Slow dragon thanks some much for the refs, work in medical profession so know benefit of evidence , guidelines and how useful this is to take to the Gp 👍🏻👍🏻.

Interesting thoughts on the use of the pumps, have been using for a week or so now and would agree helps a bit with fatigue and get up and go 👍🏻

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