For background, I was diagnosed with hypothyroidism (Hashimoto's) back in August and put on 50mcg Levo, then moved up to 75mcg five weeks ago. I've been feeling a bit better in the last week or so - my most overwhelming symptom is fatigue and I can now stay up until 8pm, which is a big improvement on before.
I'd like to try 100mcg Levo as I think it could get me even closer to my old self, but I've been really worried about what to do if my next NHS results come back "normal". To help me prepare for my GP appointment in a couple of weeks, I got tested privately so that I'd have a heads-up about my results in advance. Sure enough, they are "normal", and I'd love to have your views as to whether I can make a case to my doctor for increasing my dose to 100mcg. Here they are:
TSH 1.68 mu/L (normal range 0.27 - 4.2 mU/L)
FT3 3.7 pmol/L (normal range 3.1 - 6.8 pmol/L)
FT4 19.6 pmol/L (normal range 12 - 22 pmol/L)
(Test done early morning before Levo and on empty stomach. My NHS test is in a week so I suspect they'll be around the same, perhaps slightly better.)
I'm still getting to grips with what the numbers mean but think FT4 is good but that FT3 should be closer to mid-range? My GP only tests TSH and FT4 so I doubt she'll want to increase my dose. Any tips on what I should tell her?
Thanks
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Hi, yes, I'm taking Vit D3 spray (3000IU daily) and have gone gluten free, both thanks to advice on here. I haven't had antibodies tested recently so will look into that. Still so much to learn... Does the poor conversion mean that I might not need more Levo? Can it be addressed by improving my vitamin levels? Sorry for all the questions.
When you have your next blood test, ask for antibodies to be checked at the same time. Some doctors think they're not necessary but they are as they will confirm or not if you have an Autoimmune Thyroid Disease, called hashimoto's. . Your results:
TSH 1.68 mu/L (normal range 0.27 - 4.2 mU/L) - can be lower, i.e. 1
Levothyroxine (T4) is an inactive hormone and it has to convert to T3 which is the active hormone.
FT3 3.7 pmol/L (normal range 3.1 - 6.8 pmol/L) - it is very low and as T3 is the active thyroid hormone an increase in levo might do the trick. FT3 should aim towards the upper part of the range.
FT4 19.6 pmol/L (normal range 12 - 22 pmol/L) - o.k but you aren't converting it to sufficient T3. So your GP might have to prescribe some T3 to your T4 but probably wont as they have been told not to prescribe it at present only an Endocrinologist can, so your GP should refer you to one if he wont add T3 to your T4..
Many doctors believe the TSH is the most informative but it is from the pituitary gland (not thyroid gland) and it rises when our thyroid gland struggles, in order to try to get it to produce more hormones. The aim is to have both Frees, i.e. T4 and T3 towards the upper part of the ranges.
Thanks. My antibodies were tested back in August and confirmed autoimmune/Hashimoto's. I'll ask for them to be tested again this time.
My big worry is getting past my GP's verdict that my results are "normal", since they don't test for T3. Last time she was reluctant to put me up to 75mcg Levo. I guess I'll just need to ask to be referred to an endocrinologist and hope they know what they're doing. I've always taken for granted that the NHS is on our side so this situation feels strange.
Tell your doctor you want sufficient levothyroxine to reduce your TSH to 1 or lower. The majority of doctors seem to believe if we do have a very low TSH that we've become hypERthyroid and that's not the case.
When your next blood test is due ask if he will check the Frees as well (rarely tested) i.e. FT4 and FT3, Both of these give a far better result than a TSH and T4.
In the U.S. they carry a dosage of 88mcg. Sometimes a small increase can make a huge difference in how you feel. Your TSH is not that low, so probably still room for a small increase.
I absolutely agree - even a small increase can flick that energy switch suddenly as you have the right amount then for the body to turn all the lights back on. I honestly think that’s what happened to me. My lights are completely off or completely on - there were only tiny improvements between the two. 🤸🏿♀️🥛
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
You need an increase TSH should be below 1 (0.2 - 0.5 ideally) and FT3 in the top 1/3 of range according to the eminent endocrinologist Dr Toft. Thyroid uk have a copy of his article in Pulse stating this in Qn 6 it would be worth taking a copy highlighting this info to show your GP and mention ThyroidUK is recommended by NHS choices so you cover your back with the source of the info. Good luck with getting an increase, 75mcg is a very low dose.
I've just been reading that Propranolol (beta blocker) can affect conversion. This could be my issue - I've been on Propranolol for migraines for 2+ years.
I'm on 40mg Propranolol daily. My migraines were frequent and debilitating so I'd be hesitant to come off it. Didn't know migraines were a common symptom; in my case possibly an early symptom.
It's a single 40mg tablet and it doesn't say LA or long-acting. So...was your situation that your migraines were a symptom of hypothyroidism and by going onto thyroid treatment and coming off Propranolol (gradually) you were better able to convert to T3?
Propranolol will block your thyroid hormone. I was put on it for headaches too. It made me feel so bad I weaned myself off it. It also messes with blood sugar and will eventually cause type 2 diabetes. Proper thyroid treatment got rid of my bad headaches maybe something you should consider for the long term,
This is really good to know. I'm now wondering if in my case migraines were an early symptom of hypothyroidism and/or whether Propranolol has contributed to my current situation.
You are correct that your FT3 is really crappy! I use a range calculator to highlight how high or low in range a result is. With Hashimotos when we are on replacement most us us do better with FT4/3 above 70%
Your FT4 looks good at 76% through range but your conversion is diabolical at only 16% through range for FT3. I don’t think an increase in Levo will really help that. Look at your Getting your Vits and minerals optimal and also add Selenium which may help conversion but I’m really not sure that it’ll raise such a low FT3 to above 70% or more.
A couple of folk have mentioned vitamin levels. This is from August:
Ferritin 42.4ug/l (7.0-150.0)
Vitamin B12 344ng/l (200-700)
Serum Folate 7.2ug/l (3.0-20)
In the same bloods my lymph results were highlighted - is this the norm for Hashimoto's?
Lymph 1.0 (1.5-4.0)
I tested for vitamin D privately and was very low so am now taking a spray supplement.
It sounds like I should be focusing on the conversion issue. Given that NHS GPs don't test T3 (or at least I can't get them to), does this mean I should ask to see an endocrinologist?
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 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
Vitamin D was 30.1 nmol/L (on the border between deficiency and insufficiency). I'm supplementing with D3 oral spray 3000iu at breakfast and will retest in a couple of months.
Thanks for the info on B12 and magnesium. I'll look into this next.
Ferritin aiming to improve to around 70ug by Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C in form of orange juice or food ideally
My GP kept me on 50mcg for over 6 months and refused to increase it. I now self treat with NDT.
I have good days and not so good. I'm basically just making it up as I go along but anything's better than trying to deal with my GP and being dismissed as a hysterical female!
This is my fear and I can see it coming after my last visit. This time my TSH and T4 look really good, which is all the doc will care about, so I'm going to have to be *that* woman. Fighting the system is just what we don't need when we're so tired.
I hope you find something that gives you consistently good days.
There's little point considering T3 or NDT until all vitamins are optimal, settled on strictly gluten free diet and in few months time weened off propranolol
But looking ahead.....for next year Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
I'm basically in the same predicament, my doctor has me on 88mcg and refuses to raise my prescription, and I feel like I hit a brick wall every afternoon at 2pm and struggle with other hypo symptoms. Like you, my numbers are normal enough for the doctor but the Free's are low. Here's what I'm wondering. How many days would we have to go off our Levo before an NHS test, to lower our results enough to warrant an increase?
First step is to get full Thyroid and vitamin testing privately.
full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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
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)
Come back with new post once you get results and members can advise on next steps
I'm positive for both Hashi's antibodies, vitamins are fine except low ferritin. My last results on 88mcg are:
TSH 1.000 (range .450-4.50)
FT4 1.17 (range .82-1.77)
FT3 2.2 (range 2.0 - 4.4)
My doctor thinks this is fine. So just my one question, relative to this post topic is, how many hours would it take to lower my FT results so that doctor would agree to an increase? Like what if I took my last dose of Levo 48 hours, or 72 hours prior to test?
Thank you! Yes, 8-9am is usually the time frame. I will leave 48 hours.
My last Ferritin was 19 (range 15-150) in Aug. I've tried to get more serious about supplementing with Vit C on an empty stomach, but I can't stand liver and such food. Have not retested yet. The rest of my iron panel is strangely fine, serum and saturation, as well as hemoglobin and hematocrit in ranges.
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
Hi Sus64, that was an extremely low ferritin result in August. As you may have seen pointed out on here before, "in range" for blood results does not necessarily mean optimal. So it's always worth posting any results on here, with ranges. Worth posting iron panel results in your case, for others to comment if necessary. As you said above for your low FT3 and FT4 results "My doctor thinks this is fine" but we know better!
I agree that you do need to optimise your nutrients, in particularly Vit D3, ferritin and folate. Magnesium is also an important co-factor - interesting there are numerous publications on magnesium deficiency and migraines, so I would advise you to look into this.
Some people take selenium supplements, which can help the conversion of T4 to T3 - your T3 is definitely too low compared to your T4 and your TSH should be below 1.
A normal replacement of thyroxine should be around 1.6 mcg per kg of body weight. This is actually stated in the NICE guidelines. So for example if you weigh 60kg, a general replacement of thyroxine replacement would be 96 mcg rounded up to 100. Some people may need more but its at least a starting point!
Thank you. I didn't know this about body weight. I'm too scared to weigh myself these days but would certainly be over 100mcg going by that rule of thumb.
The irony is that you would probably not have difficulties with your weight if you were on the orrect dose of thyroxine, if you have too little, your metabolism slows down and many people gain weight!
I did this. My doc gave me several packs of 50 and 25. I decided I needed more so I just started taking two 50’s when they did the next good check I said I’d increased my dosage and I felt a little better on it next prescription was for 100
Your FT4 is too high while your FT3 is too low. You probably need to get an endo to add a small dose of T3 as you are not converting the T4 to T3, which is Thyroxine's only job, to begin with.
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