Hi everyone, l am new on here. I have been on levothyroxine now for around 22 years, l have been on 200mcgs at my highest dose then been messed about with doses by my GP who has had me on 150, 125, back up then down again. The last time he wanted to change my dose from 200 to 150 l said no let’s try 175mcgs. Has l feel shattered on anything less. I have struggled with my weight for a long time and followed many diets do well initially then hit a standstill. This last 12-18 months has been hard and l have put weight on around my tummy, my mood is up and down. The last few months my sleep pattern is terrible, my joints or constantly aching, l was putting this to age menopause. I am constantly exhausted my hair is thinning at the front and falling out. I also have PN. I am so drained with no energy. I recently had a blood test and was told it was fine to stay on the dose l am on and re- test in 12 months. I have never had the actually physical results/numbers. It’s only discovering this sight that l have realised l should of questioned it. Any advice from you all would be welcome l just feel l can’t go on feeling like this, what be a good start?
Help with Levothyroxine dose and do l need T3? - Thyroid UK
Help with Levothyroxine dose and do l need T3?
Zen-garden
Welcome to the forum.
There could be a couple of reasons that your dose keeps being changed and one of the most important things to do is always get a copy of your test results, keep them on a spreadsheet or similar so that you can instantly compare them.
In the UK we are legally entitled to our results so all you have to do is ask the receptionist (never the doctor as they don't like us understanding things) for a print out of your results. Never accept verbal or hand written results as sometimes mistakes can be made, always get a print out. On there you will find the name of the test, the result and the reference range, eg TSH: 2.5 (0.27-4.2).
Once you have your results, post them on the forum. Historically we can see why your doses have been changed, more recent results will tell us your current thyroid status.
For a full picture we need:
TSH
FT4
FT3
Unfortunately TSH is often the only test done, this is totally inadequate as TSH is not a thyroid hormone, it's a signal from the pituitary for the thyroid to make hormone if it detects there's not enough. However, the time the test was done can affect the TSH level so unless the test is done at the same time every time we can't compare them. Also certain foods can affect TSH so it's best to have nothing but water before a thyroid test.
Sometimes TSH and FT4 are tested, the FT4 being the test that measures how much free T4 (thyroid hormone/thyroxine) we have and most people on Levo need this to be in the upper part of the reference range.
FT3 is rarely done but this is the most important test, this is the test that tells us if we are over medicated or whether we have poor conversion of T4 to T3. This may be done when TSH is suppressed.
Another reason your dose has been changed could be that you have autoimmune thyroid disease (know to patients as Hashimoto's) which is where the immune system attacks and gradually destroys the thyroid. With Hashi's levels/test results fluctuate as a result of these attacks.
Nobody can tell you if you need T3 until we have seen results of these tests. Also, because thyroid hormone needs optimal nutrient levels to work properly we should also test
Vit D
B12
Folate
Ferritin
If you can't get all these tests done with your GP then it would be a good idea to get a full thyroid/vitamin bundle from one of our recommended private labs who offer them with either a fingerprick test of venous blood draw which costs extra. The most popular are:
Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...
Check this page for details of any discounts: thyroiduk.org/getting-a-dia...
or
Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...
Check this page for discount code thyroiduk.org/getting-a-dia...
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Come back with your results, include the reference ranges as these vary from lab to lab, and we will be able to help you further.
Thank you, l will ask for my results, how far back would we need to go?When l was first diagnosed with hypothyroid l remember seeing something on my notes about hashimoto’s syndrome. It was a different GP then, do you think l should make an appointment to speak with my GP about it or just ask receptionist for my results?
Zen-garden
I'd ask for as many as possible. You can have your complete record but you may have to wait for that. Certainly you want to know the result when Hashimoto's was mentioned, it should have shown raised thyroid antibodies to confirm Hashi's.
Don't bother with the GP, they don't like you having them and you'll be asked why, just ask the receptionist, she'll need the doctor's permission anyway but you can't be refused your results as you're legally entitled to them without charge or question.
Thank you so much for your support l will get on to them on Tuesday after the bank holiday and will ask you about them again if you don’t mind?
No problem 😊
Hi SeasideSusieI have managed to get one result which means nothing to me but they tell me is normal.
It was done on the19/04/21 taken at 9am
Results serum freeT4 level 12.1 7.00-17pmol/L
Serum TSH level 3.46 mu/L 0.40-4.40
That’s all that l received can you interpret?
With thanks
Zen-garden
The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Your TSH is far too high and your FT4 is just mid-range (51% through the range). You are undermedicated and need an increase in your dose of Levo, 25mcg now and retest in 6-8 weeks.
At the moment we can't tell if T3 will benefit you. To know this you need to get TSH as low as possible (1 or lower) which will give the highest possible FT4, then FT3 has to be tested at the same time. If FT4 is high with a low FT3 that shows poor conversion of T4 to T3 and adding T3 may be helpful. But before adding T3 we need optimal nutrient levels - Vit D, B12, Folate and Ferritin - so these will also have to be tested.
I am on my tablet at the moment, I will go to my PC where I have some links to information which should help you get an increase in your dose of Levo.
Zen-garden
Here is the information to show your GP which should help you get an increase in dose:
From GP Notebook
gpnotebook.com/simplepage.c...
Target level for TSH during thyroxine therapy
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
From GP online
gponline.com/endocrinology-...
Under the section
Cardiovascular changes in hypothyroidism
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
From the British Thyroid Foundation:
btf-thyroid.org/thyroid-fun...
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.
Do l print the three articles listed and is Dionne the one l can ask for a copy of them ?
I have given you links to the first three articles, give the links to your GP who will have no problem accessing the articles although you will have to point out the appropriate bit.
It's the Dr Toft article you need to ask Dionne for.
Thank you so much for that.
Zen-garden
Please do not supplement anything until nutrient levels have been tested, this is because you need to know
(a) if you are low or deficient and
(b) if you are deficient your GP should prescribe and
(c) if just low we can guide you in taking the correct dose of supplement.
I have never been given any, the results just come via text and say they are ok? Could ask for them.
Thank you l will do that
Oh dear, this experience sounds so much like my own. I have now had to go to a private functional medicine specialist in Stockport to fund T3 privately as the NICE and NHS (I could say so much more but it is against the rules of the website!!!) are bankrupt and do not prescribe the T3 which, in my humble opinion should be prescribed as it is one of the natural hormones required for healthy thyroid function. I also do private thyroid blood tests as the GP's are told NOT to test for T3, and if you are lucky only test for TSH and T4. Since getting my T3 dosage, and upping my D3, B12, Ferrous sulphate in vitamins (sprays, not tablets) I can honestly say that I have NEVER looked back. I'm still battling the weight gain but that is just my lack of physical exercise and stress eating. There are many on this website who are far more advanced in the thyroid journey and are best/better placed to give you advice. Please do take copious notes. Good Luck
Hi Yammie, Thank you for your reply, l have not been able to get hold of my surly this week as with working every time l ring was unable to get through. I have felt so exhausted this week, my motivation is shocking, the tiredness is really getting me down, l have no energy and my body is just aching so much it’s making it hard to sleep. I think l may have to have some private testing as l have never felt this bad before. Has the T3 made helped with the exhaustion?
Hi zen-garden. Oh boy has it ever. T3 and ferrous sulphate (look up Active Iron on Amazon) as well as vitamin D3 spray high dose. Those three really help with exhaustion. Start sith the vitamins and then look up functional medicine specialists near you. The private bloods I do are from medichecks, thsy are brilliant. Then post your results to this forum and the experts on here will steer you in the right direction.
Hi Yammie,Thank you so much for your advice, will have a look on Amazon.
Hello Zen-garden ;
First and foremost we need to see your blood tests results and ranges before you supplement that you may not even need.
There are companies listed on Thyroid uk , the charity who support this amazing forum, and where you can arrange your blood test and within a few days have all the answers we need to help you find better health.
We need to have a TSH, T3, T4, inflammation, antibodies, and ferritin, folate, B12 and vitamin D :
I very much doubt you will be able to get this actioned by your doctor and historically, if you are on thyroid medication, the yearly thyroid blood test is only a TSH, which is the least important reference when on any form of thyroid hormone replacement.
When with this full, advanced, thyroid blood test just post the results and ranges back up in a new post and you will be offered considered opinion.
If you take Levothyroxine leave 24 hours between last medication and blood draw.
Bloods best taken early morning, fasting overnight, just taking water.
Leave off any supplements for around 7 days.
Organize to take the blood draw on first few days of the week so you'll have it processed fresh and not left in the post, or weekend at the laboratory,
This is where we all start off - you are not alone in all this - and you can turn some of this around for yourself.
Now that you e found this site, you've made a start. Next step is to get a baseline of where your levels are. Get your blood tested via Medichecks or Blue Horizon or Thriva etc but make sure it's a week after taking any supplements and is first thing in the morning, before you take meds. Once you get results, post here. You need to get at least tsh t4 and T3 but if you're spending money as a one off, people here would like to see all your vitamins - D, folate, b12 etc
As to your historic results, they're worth seeing but will unlikely show T3 as fox's rarely test. If you get know joy from the receptionist, ask for an appointment with the Practise Manager. Most surgeries will give you online access to all your history, if not you have a right to see your history in another format.
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