Hi
Last year I got lots of helpful advice on here. I'm feeling poorly again now and am trying to show my GP that I need more levo.
There used to be a formula or calculator on here that would tell you where your result was within the range. Does anyone recognise what I am thinking of please, and where to find it?
Thanks
There are TWO pinned posts about calculators!
healthunlocked.com/thyroidu...
Sorry. I did honestly look, but my brain has turned to mush.
Sorry - it was meant to point out to Eeyore100 so that members get pointed at both of them. That way you have a choice which to use. 
I have added a pinned post pointing to both of them:
if you share latest results someone will be able to help. 🤗
Doctors frequently under medicate as they have been given poor guidelines and if a patient’s TSH and thyroid hormones are not ‘aligned’ the thyroid hormone replacement is WRONGLY sacrificed to keep the TSH - a pituitary hormone in range.
And what is TSH? It’s a pituitary hormone that’s produced to stimulate the thyroid to produce thyroid hormones. So it is one of those eternal conundrums as to why so many so called intelligent people follow these guidelines without question.
That said, there is latitude written into the guidelines but it is subtle and more in the form of general waffle at the start about applying guidelines but if that doesn’t work treat the patient and the guideline dosing of Levothyroxine is frequently at odds with TSH. Doctors prioritise TSH. Unequivocally, patient’s symptoms and thyroid hormone levels should be the priority.
Pinned posts
There’s one on it’s ok to have a low TSH with lots of references and mine on NHS and NICE guidelines- the useful bits. 😊👍
I would add that 'within range' needs to be considered with regard to what is the good point in the range for YOU. When I was first hypothyroid my lovely GP allowed me to test every month for me to assess my levels against my symptoms . My conclusion was that I felt better if my T 4 was towards the top of the range.
So if you still feel bad despite being in range then this could be why ( along with a lot of other reasons too of course ! )
wishing you lots of luck on your investigative journey
well said Celtic! Tired2022
oh and blimey weren’t you lucky getting a helpful GP. 😲👍 It just shows they are out there. Independent critical thinkers (such a positive!)
That would be great, Thank you. Basically, what has happened is that I went to the GP. She said that my symptoms don't sound like thyroid, but she will do blood tests to humour me. She thinks I am exhausted/burnt out. I should be kind to myself. She will see me in four weeks to discuss how to manage my exhaustion/burnout....
It's true I have a lot on and it's been like that for a while. However, I really cannot function currently and I am suffering all the same issues as went away when I got settled on thyroxine.
My bloods have come back within range and therefore no action is required. Must be burn out...
Feb 2024:
Serum TSH level 2.20 mIU/L [0.27 - 4.2]
Serum free T4 level 16.0 pmol/L [11.9 - 21.6]
There are other blood tests if results are helpful. Vit D low and she has advised to take 1000 Vit D daily. Vit B is high but not super high.
March 2023:
Serum TSH level 0.74 mIU/L [0.27 - 4.2]
They didn't do T4 on this occasion.
My B12 was above range here too.
My Vit D was fine - I had been on meds for this and they were checking.
Dec 2022:
Serum TSH level 0.47 mIU/L [0.27 - 4.2]
Serum thyroid peroxidase antibody concentration 930 IU/mL; Thyroid (TPO) Ab Ranges
Still no T4. My Vit D was low and I was prescribed tablets for this.
I know that what I probably need to do is show the GP that my TSH used to be 0.47 and now is 2.something and I feel much worse and would like to trial 100mcg Levo (currently on 75mcg OD). However, she seems to have made up her mind already that my thyroid is fine. I am so tired and I want a shortcut. I have been looking for countries where you can buy OTC, as that even seems easier!
I will be grateful for any advice. Please let me know if there is any other info that would help.
Thanks so much.
This was Aug 2022 when I got put on Levo:
Serum free T4 level 9.8 pmol/L [11.4 - 21.4]; Hypothyroid.; Below low reference limit
Serum TSH level 11.90 mIU/L [0.27 - 4.2]; Above high reference limit
Then Oct 2022 Levo increased to 75mcg:
Serum free T4 level 12.6 pmol/L [11.9 - 21.6]
Serum TSH level 6.79 mIU/L [0.27 - 4.2]; Above high reference limit
Your fT4 is only 42% through range so if you have enough in stock I'd certainly increase by 12.5 or 25mcg a day whilst you wait to argue this out with your reluctant GP 🙃 we all tend to get burn out dealing with them!
Have you ever had a fT3 result to see how well you convert?
The trouble is I feel like I need to have a game plan. I do have enough stock to boost and I would like to. I'm worried she will ask me to have another blood test and if I self-medicate I will shoot myself in the foot. Although, if I self medicate and it looks right, maybe she will agree with me...?
Usually I have a very good brain and I am beside myself at frustration with the brain fog.
My GP appt is 19 Feb.
I am so grateful for your support. Thank you
I went through this phase... I upped my dose and then told my GP I felt much better and she increased my prescription 🤷♀️ it is such a ridiculous game we have to play!
If you have it do it and then you will feel so much better and be able to deal with the nonsense.... it certainly isn't going to make you over medicated
75mcg would be suitable for someone weighing around 46kg
Thank you. I weigh around 70kg. My baseline weight was 55-60kg for many years. I have lost a few kilos since starting levo but it's such slow going. My weight was stable all my life before so I never needed to know about dieting til now.
I've gone through my results and I don't see any for T3. Do you think I should campaign for that? I have improved since starting levo but would say am not back to baseline. On a good day two thirds of my old self maybe.
It is certainly essential to know how well you convert as unless T4 converts to fT3 you aren't getting much benefit... like I say 42% is too low fT4 usually needs to be around 65-85% when on levo only and hopefully fT3 won't be far behind
Thank you. This is so helpful. Is this in the NICE guidelines about testing for T3 conversion and needing T4 to be 65-85% through range?
Are you taking any other medication? And being cheeky but how much do you weigh? Can we leverage the guide (and it is a guide) dosing rate of 1.6ug per kg or 10ug per stone (for us that still think in old money)? I’m 15 stone so need 150ug of Levothyroxine. (I’m a Big bird).
It would be worth doing a private blood test. Obviously better if you could get full compliment thyroid test with vitamins and minerals. Everything needs to be optimal for Levothyroxine to be effective. The vitamins and minerals play a part in conversion and utilisation of T4 to T3.
So we need to know weight and any other meds and health problems. 😉👍
Then you need to use their own guidelines against them. They will say they are following guidelines (blaaaaa!). They are so poorly trained. All taught the same rubbish so think it must be right because they all know it. Echo chambers are so very dangerous. I have literally done a post on patient autonomy last night - it is now pinned and I added two links of two other pinned posts at the bottom so it’s all in one place. Have a read 😊.
Thank you. I weigh about 70kg. I don't have any other health issues although I am 49 so probably approaching menopause... I don't have any prescription meds. The GP has told me to start taking Vid D 1000 (I already was, so have put it up to 2000) I take the well woman multi vitamin and minerals daily.
I do try to avoid blood tests. They did test for lots of things this month. Although not for T3. Is that what the private blood test would be for?
How can I see the pinned posts, please? Sorry to be thick. Thanks again
We seriously do not encourage multivitamins - you get stuff you don’t need, not enough of what you do and taking it all together impairs absorption they complete/cancel one another out. Plus they quite often put poor quality preparations in them. That said even if they were the best prepared- I would still stick to singles now. I dumped them years ago and much better for it. Work on the known deficiencies and try to space out away from Levothyroxine and each other.
Magnesium is important when taking levothyroxine there are a few forms but take it at least four hours away from Levothyroxine. I use magnesium citrate at night (good for ermm 🚽😫) and there are different benefits to each type of magnesium.
Vitamin D best taken with cofactors K2-MK7 (these are good taken together) helps direct calcium out of blood vessels and into bones. It needs to be a couple hours away from everything else and I generally take Levo when I get up in the early morning for a ‘you know’ then back to sleep. Morning vitamins for me then D + K-2MK7 then magnesium at bedtime. I keep everything well away from levothyroxine.
Then we have guide dose!
70kg x 1.6ug = 112 ug as a guide only but certainly leverage. It not enough to be in range. You can be in range and feel very ill and in range and feel very well- some folk like me have a sluggish TSH and I had to start ignoring it at 50% of my therapeutic dose. It was a bit of work but I got there I did posts on self advocacy and they sit in my profile. Click on my icon/badge to access my profile (top left of my reply).
might be worth considering trialling gluten-free as well. It was suggested to me when I joined the forum and I was sceptical but desperate and I did go gluten-free and it did make a profound difference. Nothing tastes as good as gluten-free feels- I really cannot believe the difference it made. Some people also go lactose free and I did at the start but re introduced as I found it didn’t make any difference - though I do watch how much I consume.
Thanks. That's good advice. I have been gluten free for about a year. As you say, nothing tastes as good as gluten free feels. I'll have a look at the vitamins. It seems so complicated spacing them out through the day. I'm sure it's not when you're used to it. I have enough trouble remembering to take the levo!
I know it does take a while just make sure to introduce one at a time leave a couple weeks then the next. Try not to change too much at once. It’s a bit of an info overload at the start . Don’t fret just go slow and bite sizes. Takes a while. I’ll try to dig out some more stuff for you tomorrow. SlowDragon replies regularly on vitamins- amazing! I’m creating some info with her help but in the meantime it is worth using the member search and popping her name in you can see all her replies on her profile. There is also a profile that has been memorialised of the amazing SeasideSusie. Sadly lost to us all last year. Very knowledgeable.
Doh! Must add this - if you do get a private blood test leave off any supplements that have biotin in the for at least four days. I have noticed it is starting to be mentioned- about time - it can affect results of tests. Also worth looking at the actual results for vitamins- NHS idea if ok in bottom of range is too low for us . Would be good to see the numbers 😊👍
Thanks for all your advice with this.
The GP tested B12 and Vit D as follows:
B12/Folate Haematinic assays
Serum vitamin B12 level 779 ng/L [197.0 - 771.0]; Above high reference limit
Serum folate level 7.3 ng/mL [3.0 - 20.0]
Total 250H Vitamin D 47.8 nmol/L; 25OH Vitamin D 25-50 nmol/L is consistent with insufficiency.
Thanks again.
Oooo yes
So B12 right at top/slightly over range Folate isn’t brilliant either
- and D is too low need it around 100 + to feel the benefits. I think most people do. If we have low stomach acid it makes absorption of nutrients less effective- hence why we all pop supplements 😬👍
I’m still getting my head around everything B12 and B vitamins related. Does the well woman multi have a large dose of B12? It would be worth working out just how much you were getting from this. The reason I am flagging is there was something I came across the other day about a B12 paradox, but I don’t know enough to discuss at any length other than to suggest you look into it (Google?) and to say there is a pernicious anaemia group on health unlocked and you could pop over there and search their posts for info or ask a question? You might have to join the group to interact but I have read they are great and give good advice.
B vitamins are on my to do list but juggling at present. Wishing there were 48 hours in the day - I could fill them!
😂👍
Likewise. Or a more efficient brain,
I had stopped taking the vitamins two weeks before the test as I had read that it would affect the result but didn't take in the details.
I have had that pattern of low folate and high B12 tomorrow and I am reading about it (very slowly). It was something about levels are high in your blood because your body does not absorb it therefore you can have high B12 levels in your blood while also being depleted... I will put it on my list to ask GP.
Thanks so much.
Yes i think that’s it. Definitely one for me to get ahead of - if you get there first share your sources 😂👍🤗
I have hit a wall today first time in months! Stress related- defending my health from brain washed GP. I won but it takes its toll.
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