Persuading GP to increase Levo: Hi all, For... - Thyroid UK

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Persuading GP to increase Levo

Tatties
Tatties

Hi all,

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 :)

64 Replies
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SlowDragon
SlowDragonAdministrator

Your post two weeks ago showed you are vitamin D deficient

Did you get GP to prescribe vitamin D ?

You also need B12, folate and ferritin tested

See GP and request these are tested

Have you had thyroid antibodies tested?

If not, these need testing too

Currently your conversion is terrible. So likely vitamin levels are low

Tatties
Tatties
in reply to SlowDragon

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.

shaws
shawsAdministrator
in reply to Tatties

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.

Tatties
Tatties
in reply to shaws

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.

shaws
shawsAdministrator
in reply to Tatties

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.

ww.thyroiduk.org/tuk/testing/interpretation_thyroid_blood_tests.html

Gem5987
Gem5987
in reply to Tatties

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.

MissGrace
MissGrace
in reply to Gem5987

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. 🤸🏿‍♀️🥛

Tatties
Tatties
in reply to MissGrace

This is what I have heard from other people and am hoping for - the moment when you get your energy back and really feel the difference.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

You don't need to retest antibodies

NHS will never retest anyway

You know you have Hashimoto's

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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Tatties
Tatties
in reply to SlowDragon

Thanks. I've recently adopted a gluten free diet.

NWA6
NWA6
in reply to Tatties

You won’t need your antibodies tested again if they’ve already been done and Hashimoto diagnosed. We’re all your other Vits/mineral levels good?

TSH110
TSH110
in reply to Tatties

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.

Tatties
Tatties
in reply to TSH110

Thanks - I will look for this and take it with me. This is just the kind of advice I was hoping for.

Tatties
Tatties
in reply to SlowDragon

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.

shaws
shawsAdministrator
in reply to Tatties

If you take proprpanol well away from levo, I think it should be o.k.

I've had to take it when the cardiologist prescribed it as I had severe palpitations when I took levothyroxine.

Tatties
Tatties
in reply to shaws

That's good to know. It works really well for migraines so is be reluctant to come off it.

Tatties
Tatties
in reply to Tatties

*I'd

shaws
shawsAdministrator
in reply to Tatties

I used to get migraines when much younger. Thankfully I've not had any for years now. They can be very disabling.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Migraine is common hypothyroid symptom

Propranolol does affect Levothyroxine

How much propranolol are you taking?

Propranolol may also lower magnesium

labtestsonline.org.uk/tests...

You can NOT just stop propranolol it has to be weened off incredibly slowly

Tatties
Tatties
in reply to SlowDragon

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.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Is this long acting propranolol capsule?

Or propranolol tablets

Tatties
Tatties
in reply to SlowDragon

Tablets. Wasn't aware of the capsule.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Tablets are much easier for being able to cut dose down

So do you have 4 x 10mg tablets?

Or a single 40mg tablet? Does it say propranolol LA (long acting) or just propranolol?

Changing to smaller 10mg dose tablets makes it easier to start cutting down dose

I was stuck on propranolol 20 years (more on my profile)

Max I found I could reduce by was 5mcg per day - hold at 2/3 weeks .....then cut down another 5mg etc etc

Last 5mg extremely difficult

Cut one day a week, then twice a week following week etc

But you probably need to be on higher dose levothyroxine first

Certainly vitamins optimal first

Tatties
Tatties
in reply to SlowDragon

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?

SlowDragon
SlowDragonAdministrator
in reply to Tatties

I have never had migraines

Propranolol was the only way I could tolerate increase in Levothyroxine to dose I needed. Couldn't get dose over 88mcg without propranolol

More on my profile

Tatties
Tatties
in reply to SlowDragon

When you say coming off it was difficult, in what way? Did your migraines return?

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Propranolol reduces the amount of adrenaline you make.

It has to be reduced very very carefully otherwise you can get low adrenal levels

So although it's not technically addictive, it's very slow process to ween dose slowly down

magsyh
magsyh
in reply to Tatties

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,

Tatties
Tatties
in reply to magsyh

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.

chorobytarczycy.eu/kalkulator

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?

Thanks everyone.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

How low was vitamin D ?

How much are you currently taking?

Are you also supplementing magnesium (especially as you are still on propranolol)

Suggest you read the magnesium miracle about propranolol

Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

etesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...’s-role-in-sleep-the-gut-b-vitamins

B12 and folate on the low side.

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Tatties
Tatties
in reply to SlowDragon

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.

Gingernut44
Gingernut44
in reply to Tatties

Are you using the Vit D spray with K2 included and are you taking three sprays to get your 3000 ?

Tatties
Tatties
in reply to Gingernut44

It doesn't have K2 and it's one spray of 3000.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Suggest you either add separate K2 or buy the spray with K2 in

The spray that includes K2 only lasts 30 days (3 sprays per day)

Whereas the plain vitamin D spray lasts 100 days

Natural origins K2 Mk 7 nice little capsules if you opt for separate K2

Tatties
Tatties
in reply to SlowDragon

Any idea what amount of K2 I should be taking, at least to start with?

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Better You make a vitamin D mouth spray that includes vitamin K2 mk7

betteryou.com/vitamin-d-k2?...

This spray is 3 sprays for 3000iu per day and lasts 30 days

The 3000iu without K2 is a single 3000iu spray per day so lasts for 100 days

Alternative K2 Mk7 option

luckyvitamin.com/p-1139144-...

SlowDragon
SlowDragonAdministrator
in reply to Tatties

Important to supplement a vitamin B complex rather than just B12

SlowDragon
SlowDragonAdministrator
in reply to Tatties

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.

That's a nightmare. Are you feeling better now?

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.

SlowDragon
SlowDragonAdministrator
in reply to Tatties

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

thyroiduk.org.uk/tuk/About_...

Tatties
Tatties
in reply to SlowDragon

Thanks. How do you know all this info, slowdragon?!

SlowDragon
SlowDragonAdministrator
in reply to Tatties

20 years of hell on Levothyroxine only (and propranolol)!

Only made progress after joining the forum

More on my profile

Sus64
Sus64
in reply to Tatties

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?

SlowDragon
SlowDragonAdministrator
in reply to Sus64

Sus64

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

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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

Sus64
Sus64
in reply to SlowDragon

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?

SlowDragon
SlowDragonAdministrator
in reply to Sus64

Your FT4 is only 36% through range, so GP should be increasing dose

FT3 only 10% through range

Helpful calculator for working out % through range

chorobytarczycy.eu/kalkulator

Do you get blood test as early as possible in morning before eating or drinking anything other than water?

Suggest you leave 48 hours before next blood test

(Taking missed doses immediately after blood test)

How low is ferritin?

Sus64
Sus64
in reply to SlowDragon

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.

SlowDragon
SlowDragonAdministrator
in reply to Sus64

Yes...ferritin is definitely a problem that low

You can hide liver in spaghetti Bol, shep pie etc

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

Links about iron and ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Sus64
Sus64
in reply to SlowDragon

Thanks very much for your help, I will check out those links and keep plugging away at this problem.

Lesleyg13
Lesleyg13
in reply to Sus64

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!

Sus64
Sus64
in reply to Lesleyg13

Thanks for the encouragement. It hasn't all sunk in yet, but this forum has given me lots of strategies to implement, which gives me hope.

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.

ncbi.nlm.nih.gov/books/NBK5...

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!

Hope you will get it sorted soon.

SlowDragon
SlowDragonAdministrator
in reply to Tina_Maria

And the irony is propranolol is often prescribed

And propranolol lowers magnesium

Yep - its the usual poo - treat the symptoms, not the cause!! :-(

Tatties
Tatties
in reply to Tina_Maria

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.

Tina_Maria
Tina_Maria
in reply to Tatties

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!

Fight for your increase to get well! 👍😜

Tatties
Tatties
in reply to Tina_Maria

I have gone up 3 dress sizes in less than a year!

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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