Burning symptoms on levothyroxine?

[Sammy0]

Ever since being diagnosed with hypothyroidism, I've been on levothyroxine. The first time I took it I felt lots of burning in my scalp , arms and back. However, my Dr dismissed it as nothing. So for two years I've continued to be on it . With an increase in dose I find the burning through my spine and scalp gets worse. I've also started with painful finger and toe joints since an increase in dose though my rheumatoid markers are normal. The endocrinologist i saw refused to believe this was in anyway a reaction and was not typical of levothyroxine or fillers. Instead I've been diagnosed with fibromyalgia. However, I'm not convinced -has anyone else had these symptoms on levothyroxine and tried other things?

[SlowDragon Administrator]

How much levothyroxine are you currently taking Do you always get same brand

Which brand

When were vitamin levels last tested

What vitamin supplements are you currently taking

Painful joints often low vitamin D

Burning skin often low B vitamins

Fibromyalgia is frequently inadequately treated hypothyroidism either due to inadequate dose or poor conversion of Ft4 to ft3

Please add most recent results and ranges

For 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

Do you have Hashimoto’s?

Ask endocrinologist/GP to test vitamin levels or test privately

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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 down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Vitamin D NHS postal kit

vitamindtest.org.uk

[Sammy0 in reply to SlowDragon]

Hello slow dragon, so sorry for my late reply to your very kind message. My mum's been really poorly for a while and I am her carer so had little time for anything else. Your answer is very thorough. In answer to your questions-yes I always get the same brand of levo (accord for the 50mg and Teva for the 25mg) I take 75mg per day. I also take vit d and magnesium supplements every day. I did have my vitamins tested but not recently. I've been suffering these symptoms now for three years. I've had my antibodies tested so don't think I have Hasimotos though I can't get a straight answer. My rheumatoid markers suggest I don't have rheumatoid arthritis. I did have a proper cortisol test and found I had high cortisol in an evening and this has been addressed as I've just started seeing a Functional Dr recently. He wanted to get my adrenals functioning properly before addressing the thyroid issues. My Gp and recent endocrinologist have been a complete waste of time. My last thyroid function test was as follows- TSH-0.87 (0.40-5.50 pmo/L) ,

Free T4- 19.5 ( 11.00-26.00 pmo/L).

Free T3- 4.3 3.00-6.00pmo/L)

Do these figures look ok?

I really appreciate all the information you've sent me. Think I'll go back to my Dr or order some better vitamin tests. I'm also waiting to see the result of tests back from the neurologist I've recently seen. Much appreciated

[SlowDragon Administrator in reply to Sammy0]

Teva brand upsets many, many people

Suggest you change to just taking Accord

You’re almost certainly under medicated

Ft4 is only 56% through range

Ft3 is only 43% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Most hypothyroid patients need Ft4 and ft3 at least 60% through range minimum

Ask GP to increase dose levothyroxine to 100mcg daily

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

Accord don’t make 25mcg tablets.

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[Sammy0 in reply to SlowDragon]

Thank you Slow Dragon that's been really helpful. For about 18 months I was on only on 50mg yet still having symptoms then put on 50 alternate 75mg and still no better so a rise makes sense. I was worried I was being overmedicated because of the joint aches.

However, I don't think my Dr will put me on 100mg as they will be afraid my TSH will drop too low, and the recent awful HNS endocrinologist I was referred to said all these results were results were normal and that my symptoms were nothing to do with undertreatment of my thyroid so my GP will be guided by him. How do you overcome that?.

I mentioned I'd recently started to see a functional Dr-he wants to try me on T3, do you think this would work in raising my free T4 and T3 as well? I'll certainly ask about changing brands to Accord and do some digging. I weigh 73 kilograms.

[SlowDragon Administrator in reply to Sammy0]

Then you clearly need next dose increase in levothyroxine to 100mcg

73 x 1.6 = 116.8mcg as likely dose levothyroxine required

Likely to need further increase in levothyroxine after next blood test to 112.5mcg per day

[SlowDragon Administrator in reply to Sammy0]

How much do you weigh in kilo?

guidelines on dose levothyroxine by weight can help persuade GP to increase dose levothyroxine

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[SlowDragon Administrator]

Few links about fibromyalgia


healthrising.org/blog/2019/...


thyroiduk.org/tuk/research/...



stopthethyroidmadness.com/f...


prohealth.com/library/new-t...


chriskresser.com/low-t3-syn...





holtorfmed.com/download/chr...

[Sammy0 in reply to SlowDragon]

Thank you SlowDragon, I'll have a good look at these, very helpful xx

[ZoBo]

Hi Sammy very interesting to me to hear your story and so sorry as I know how you feel I too have similar symptoms!

[Sammy0 in reply to ZoBo]

Sorry to hear that ZoBo but sometimes it's nice just to hear other people have the same things as you because I sometimes think Dr's think it's all in our head. Good luck finding the answers x

[humanbean]

I would suggest starting to trial different brands of Levothyroxine. There aren't many available, but many people do really badly on Teva, for example, and have to avoid it like the plague.

For lots of information on tablet sizes and drug brands/makers available in the UK see this document written by helvella , one of the admins on this forum :

dropbox.com/s/6h3h0qi4eqwi6...

[Sammy0 in reply to humanbean]

Hello humanbean, so sorry for my late reply to your very kind message. My mum's been really poorly for a while and I am her carer so had little time for anything else. It's quite surprising to hear that about Teva as this is what I'm on. For a long while I thought I may be having a reaction to levo but my Dr's dismiss it. The first time I took it I got burning through my head and scalp. I'll definitely look into now-can you ask your Dr for other brands on prescription?

[humanbean in reply to Sammy0]

You can ask the doctor to specify other brands. But before doing that you should try all of them out to find out which ones make you feel best. Some people do very well on Teva, so don't assume that the others will be better. But it does appear from my reading that people who don't do well on Teva generally find one of the others better.

Are your prescriptions sent to a local pharmacy? If they are then don't go and collect them immediately, phone the pharmacy up first and ask them which makes of Levo they have dispensed for you. If you want to try a different brand then you should ask for it.

When you go to collect your prescription don't step away from the counter until you have checked what you've been given. If they haven't done what you asked then reject what they've given you.

For info on the makes and doses of Levo that are available, see this very helpful document by helvella . If you are prompted to log into dropbox just close the sign-in box - you don't need to do that and you don't have to have an account. Scroll down this document until you come to Page 14 of 51 where it says "Levothyroxine tablets currently marketed in the UK."

dropbox.com/s/shcwdwpedzr93...

There must be a way to get a paper prescription if the pharmacist can't dispense what you have asked for but unfortunately I don't know how that is done. Before lockdown I refused to nominate a pharmacy, and collected a paper prescription from the surgery, but I was overridden as soon as lockdown happened and they nominated the pharmacy closest to the surgery. But I know paper prescriptions can still be provided - I just don't know how to get one, and so far it hasn't been necessary for me. But if you can get a paper prescription you can take it to any pharmacy - but phone up first so you know what they have available.

Once you have tried all the makes of Levo that are available with your dose you can ask your doctor to name the brand on your prescription and then your pharmacist is obliged to provide it.

[Sammy0]

Hello Scrumbler, so sorry for my late reply to your very kind message. My mum's been really poorly for a while and I am her carer so had little time for anything else. I've been doing a bit of research about fibromyalgia and heard that it's linked to under treated thyroid problems x