Out of interest, does anyone on here get on okay with just levothyroxine if you can find the right dose? I have had thyroid problems since I was thirteen and been undertreated (although diagnosed CFS) since I had RAI when I was 17. I honestly don't know what normal feels like, how will I know when I get there?
Levo only: Out of interest, does anyone on here... - Thyroid UK
Levo only
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Lilacsocks
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SeasideSusieRemembering
Lilacsocks
I got on fine with Levo only for over 20 years.
What are your current results, including reference ranges (these vary from lab to lab so we always need the ranges) for the following
TSH
FT4
FT3
Vit D
B12
Folate
Ferritin
If you post them we can let you know if there is anything obviously wrong.
FT4 10 (7-17)
TSH 1.2 (0.2-4.5)
T3 wasn't done as this was via the GP, I asked for ferritin but looks like it wasn't done, however heamoglobin, RBC and Haematocrit all got flagged as slightly low. I'm pregnant so this is probably why iron has gone low and have started supplementing iron alongside prenatal vits.
I know this is undertreated for me and I have felt better on thyroxine, so we have increased by 25mg every other day, hopefully that's enough.
For 10 years I just accepted my symptoms as CFS and something I have to live with but I'm learning better, I know I feel better with T4 higher in the range. I didn't think there was much point testing T3 this time as T4 is so obviously low and I am really really cold and tired.
Lilacsocks
The aim of a treated hypo patient on Levo, 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 FT4 is only 30% through it's range so tat needs to come up to about 14 or so.
Retest 6-8 weeks after you raised your dose, you probably need the full 25mcg daily but see how you go.
See if you can get the full vitamin tests because what's in your pre-natal multi won't raise any low levels.
I will definitely get retested in 6 weeks.
So in my bloods from Feb
Serum b12 248 (145-910)
Serum folate 11.6 (3-20)
Vit D wasn't done.
I guess this was a while ago, I'll ask to have them tested next time. Thank you for your advice.
Ps. Do you have any links to further information as to why these particular bits and mins are significant to thyroid health? Thanks again!
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, after RAIn
Ask GP to test vitamin D and ferritin levels
B12 and folate are too low
Aiming for B12 over 500 and folate over 10-12
supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and improve B12 levels
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Thanks for the information.
I was planning to do the private test for T3 as well but when I saw the T4 result was so obviously low I thought I'd save it for the next one (after increase). I follow your protocol for blood testing.
Interesting folate is low, I thought I was quote good at mid range, there is definitely folate in my multi so that might be up a bit now.
Interesting about having to stop biotin I didn't know that, I will have to check if that's in my prenatal supp.
The difficulty with taking additional supplements they are usually not recommended in pregnancy as if you should just stick to your prenatal?
Maybe if I have a test result showing I'm low it's different?
Most multivitamins contain iodine....you are getting iodine in your levothyroxine
If TTC obviously thyroid levels need to be optimal.
Folate and B12 are very important and Goldilocks hormones for pregnancy, you need enough but not too much
Suggest you get vitamin D and ferritin tested now
Ask GP to test iron and ferritin for anaemia
Do you mean I might be getting too much iodine? With the levo + prenatal vit?
Dr has already diagnosed me as slightly anemic off last weeks blood test so I am taking iron. Its probably too soon to test again but I'll ask for vit d folate and b12 when I see the midwife next week.
Thanks for your reply
X
Iron supplements need to be at least four hours away from levothyroxine or any other supplements...apart from vitamin C
You need to see exactly what’s in your pre-natal multivitamins..
Generally on here no multivitamins recommended ...But obviously might be different with prenatal
You may be better only taking vitamin B complex, vitamin D and iron supplements
Plus selenium once or twice week, and possibly zinc
Oh I didn't know o couldn't take iron with other supplements! Thanks for that! Its a juggle fitting them all in! The multi is three times a day and obviously 4 hrs away from thyroxine and I usually take magnesium before bed.
Its a bit complicated, I wouldn't want to experiment too much with supplements in pregnancy, especially since pregnancy ones are tailored. The prenatals defiy have iodine in as it's important for pregnancy apparently. I'll have to have a think.
Yes but levothyroxine has iodine in it and to much iodine is anti thyroid
Are you sure pre-natal vitamins are 3 per day?
Please add link to which ones they are
Essential to have good Ft4 and Ft3 levels...far too often on just levothyroxine we have low Ft3 levels
Here the link, you have to scroll down quite a way for the levels.
wildnutrition.com/products/...
I will definitely test T3 next time, I just thought it's save the expense this time since T4 is at the bottom of the range it was unlikely to be anything different and I need to increase anyway.
Yes...when Ft4 gets higher important to test all three
Well your multivitamin looks good...iodine only 33% of daily total, so probably ok with levothyroxine....
Lilacsocks
The multi is three times a day
Not according to the information in the link you gave which says
Dose
3 capsules taken together.
Any time of day.
🙈 thank you
Only because I’m living the journey including hypo , iron etc etc. I know the tests stink but have you tried to get a good Lyme year?? CFS, RA, and your current symptoms totally make me think Lyme,
God bless you and your lil one, and prayers you feel better soon!
Yes I'm very well on Levo and also had RAI around 20 years ago, no problems since.
That's good to hear!
I think the majority of people here are either not optimally treated on Levo alone bevause GP’s are obsessed/mistaken about TSH being and indicator of thyroid health or they need T3 or they need help with Vits/minerals and don’t understand how important they are within our endocrine system.
Have you read about Dr john Lowe ? and the major misdiagnosis of CFS when thyroid is the main problem? Have you tried t3 with t4 combo or NDT?
No, but I'll look him up. I'm sad I lost my 20s to that diagnosis but hopefully I can get right now. I haven't tried T3 or NDT.
Dr John Lowe died through an accident and he was also an Adviser to Thyroiduk. This doctor was sympathetic to those who had problems with their thyroid gland and would never prescribe levothyroxine but prescribed NDT (natural dessicated thyroid hormones) the original used since 1892 onwards and recently withdrawn by the British Association through False Statements. For people who were resistant to Thyroid Hormones he prescribed T3.
Few doctors or endocrinologists seem to be aware of how the thyroid gland functions or what is its purpose.
Hi. I have been taking levo only for 35 years and I feel very well indeed. However, I have to have a high dose. Have been taking 175 mcg for about 15 years and over recent years my TSH has reduced from 0.01 to 0.005 and my T4 has gone several points over the top of the range. However, my T3 is within range. The minute I reduce levo even by 25mcg I feel lethargic again and get tinnitus as well. My cholesterol is also okay cos I have enough levo.
I have had arguments with doctors about my numbers, especially if they don't test T3! They're only concerned about numbers on a screen. Some of them don't seem a bit bothered that I feel unwell on a lower dose. It can be an uphill struggle sometimes.
My boyfriend has been on levothyroxine only for around 15 years and is absolutely fine. His energy is great!
I have been low for over 25 years and have never felt as though I was on the correct dose of Levo, despite having blood tests regularly, my dose raised or even lowered on occasions.
I have now decided to go for T3 as well, to see if I feel any better than I do now. I would dearly love to be able to lose weight and that- without any other improvement - would make me feel better in itself, but it just isn't happening at the moment.
Hi
Levo suits me but I need to increase when feeling tired, etc.
I get my advice from this wonderful site so I'm sure they will point you in the right direction.
I simply don’t know either! I’m on thyroxine 100 mcg but feel soo tired some days I feel it’s something to do with thyroid but docs in Uk don’t offer t3 investigations .
Sorry can’t help
I have been on Thyroxine for 5yrs 100mcg also!
I constantly feels so tired also but Dr says as the numbers look normal then it's not a Thyroid problem!
I’ve been on levothyroxine for about 12 years, but since last year have been taking ramipril for BP, and rivoraxaban to reduce blood clotting. I also take digoxin for AF. and vitamins and minerals. I'm pleased to say my AF has improved since I got the level of levothyroxine that suits me (reduced from 125mcg to 75mcg)
Yes, I've got on OK with levothyroxine for over 25 years. It took a few months to get the right dose and then it was adjusted a couple of times after routine tests, but both times the readjustments only took a couple of tries.
I think a positive response to T4 only meds is more likely if you have been diagnosed with regular hypothyroidism vs autoimmune Hashimotos thyroid disease or have had your thyroid gland removed due to cancer.
That's interesting. I am hypo due to RAI to treat Graves. But I felt much better dealing with Graves every few years than now!
Hey there again,
I totally understand your last comment - if I had my time over again knowing what I do now I would stay on the AT drugs.
I wrote to you ages ago, and I've nothing else to add.
You need to become your own best advocate and this may result in you considering self medication with more than just Levothyroxine.
Some people are fine on T4 , some people are not.
Currently in the uk there seems no option to Levothyroxine as this is the only medication prescribed in NHS primary care by a doctor.
Many people who are with AI thyroid disease, or without the gland for one reason or another, find better health when trialling additional thyroid hormones, like adding in T3 to their T4 or switching to full spectrum thyroid hormone replacement and replacing like for like, namely replacing all that your thyroid supported you with :- T1. T2. T3, T4 and calcitonin, Natural Desiccated Thyroid which is pig's thyroid dried and ground down into tablets referred to as grains.
I never did well on levo (diagnosed with Hashimoto´s in 1999). I needed a higher dose than most doctors are willing to prescribe just to feel remotely human (200 mcg daily); however, the best results I ever got was FT4 78% through range and FT3 50% through range. But doctors kept telling me I was overmedicated as my TSH was 0.05...
A colleague of mine had a total thyroidectomy ten years ago (cancer). She is on 125 mcg of levo daily and feels fine. She never put on any weight, never had any hypo symptoms, she just feels normal. That always surprises as she has no thyroid so does not produce any T3 on her own. But the fact remains: she has never had any of the problems that I had and still have (but to much lesser extent since adding T3).
So I speculate that maybe the fact that people with Hashimoto´s often are hypo for years before being diagnosed and treated somehow messes us up, causing hormonal imbalances which won´t just go away after you are put on levo...after all, all endocrine glands interact, and there needs to be balance between thyroid hormones, sex hormones, cortisol etc...not that most doctors know that, of course.
I believe that it is possible to be optimally treated on levo, provided you correct all vitamin and mineral deficiencies to optimse T4 to T3 conversion, and not have any other hormonal imbalances influencing how your body uses thyroid hormone, and especially how it converts T4 to T3. Of course, not many doctors will know that. Many doctors won´t even test FT3, so have no way of knowing how well the conversion works. If it doesn´t work optimally, and your FT3 levels remain suboptimal, you will be hypothyroid, no matter how low your TSH is or how much T4 you have floating around in your system. But most doctors don´t know that either.
So I´d say ignorant doctors are a major problem and prevents many thyroid patients from getting symptom-free on levothyroxine.
Do I sound bitter? Well, let´s just say that is my own experience, after dealing with doctors for over 20 years...I´ve seen doctors who had no idea T4 is supposed to convert to T3, or even what T3 is, who believe that the TSH is a thyroid hormone, that hypothyroidism does not cause weight gain, that if your antibody levels normalise years after you were diagnosed with Hashimoto´s that means you no longer have it and are "cured"...I could go on forever. It seems most doctors have no clue about how the thyroid gland works or how hypothyroidism affects us.
Hi Lilacsocks, congrats on your pregnancy.
Just a thought......the baby will be using your FT4 in the first few months (I can’t remember exactly how long), so that could be an added reason your FT4 level is extra low and you feel extra fatigued.
My Auntie was on Levo only. She once told me it was no big shake having a thyroid issue. I wish I felt the same as her.
☺️
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