Feeling constant shaking muscles tight I am taking 25 m Levo is this normal ?

[Sunnydays11]

Been on meds 2 months

[fuchsia-pink]

Welcome to the forum

That's a very small "starter" dose, so it may be that you need a dose increase. It's recommended to re-test bloods after 8 weeks, so it's the right time to re-test.

Have as early a morning test as you can arrange [TSH is highest then] and also try and get free T4 and free T3 tested too. Ideally you would also have key nutrients tested as well - ferritin, folate. vit D and B12, as your levo works best when these are good. I have had some success with my GP by saying that these are the tests recommended by Thyroid UK.

Leave 24 hours from your previous dose of levo, to make sure you have a good representative level of hormone when the blood is tested (take the next dose afterwards) and stop taking any supplements containing biotin a week before (as biotin distorts the results).

And make sure you get the actual results afterwards, and the lab ranges [which vary from lab to lab] - please don't be fobbed off with guff like "normal" or "in range" - you want actual numbers. If you post these [and the lab range in brackets after each result] the lovely people here will hep you to understand them x

[Sunnydays11 in reply to fuchsia-pink]

Oh thanks for your advice my doctor said I’ve been border line since 2014 now on meds told me my v D was low. Had my blood test first one but told can’t give me a result because of covid. So hopefully next time I’ll get result i feel so I’ll. just wonder does low thyroid make you feel this bad ? As I don’t no anyone who has it. Thanks for your help x

[fuchsia-pink in reply to Sunnydays11]

You can feel really grotty if you're hypo (under-active) - but equally you can feel completely fine again once you get your meds right :)But with thyroid, you need to be patient, as it can take a while to get onto the right dose. So frequent blood testing, and getting hold of your results each time, is really important.

You are legally entitled to your blood results - you don't need to give a reason for wanting them, but it's usually easiest to say "for my records" - or to register for on-line access if this is available. It's not good enough to blame covid for depriving you of your blood results - most of us just pop into the surgery to pick them up (and most surgeries are still open) - or they can be posted to you - so please persevere.

Many of us have to take control of our thyroid health - from pushing the surgery to organise blood tests, to understanding the results and pushing for proper medication - because GPs sadly do very little on thyroid in their GP training.

If you're not familiar with thyroid issues, it's worth a good rootle around the hypo section of the main Thyroid UK website - and looking at helvella's excellent glossary [saved in "pinned posts"] to get to grips with the terminology

[SlowDragon Administrator in reply to Sunnydays11]

How low is your vitamin D

What has GP prescribed

On levothyroxine we MUST have good vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, when hypothyroid we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

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

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Vitamin D, has important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Bearo in reply to Sunnydays11]

I had a blood test a few weeks ago. Phoned the surgery for a print out of the results and said I’d be there in 10 minutes to pick it up. They were ready at the door with the printout so I didn’t have to go inside.

[shaws Administrator]

Welcome to our forum Sunnydays11.

I am sorry you have hypothyroidism but your dose is very small (unless you are very frail with a heart disease). The normal dose is 50mcg of levothyroxine with a blood test every six weeks until your TSH is 1 or lower (it is a fasting test and make appointment at the earliest possible - even if you make the appointment weeks ahead). Don't take levothyroxine before blood draw but afterwards. This gives us the most accurate result and prevents doctor reducing our dose of levo.

Levothyroxine is also known as T4 (inactive hormone) and it has to convert to T3 (liothyronine) which is the active thyroid hormone and our brain and heart have the most T3 receptor cells. Our body functions with T3.

Always make your appointment for blood tests well in advance, so that you have a choice. This is the procedure (most doctors are unaware of this):-

The earliest possible appointment, it is a fasting test (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. Tablet should be taken with one glass of water and wait an hour before eating. Food can interfere with the uptake.

Always get a print-out of your results, with the ranges, for your own records and you can post them if you have a query.

Also ask GP to test B12, Vit D, iron, ferritin and folate as we can be low in these and may need supplements.

[Sunnydays11 in reply to shaws]

Thanks for your advice. I don’t no much about low thyroid only feeling this bad I wonder what wrong with me. I had treatment for cancer few years ago since then not felt right no energy . I’ve heard radio and chemotherapy can effect your thyroid I’m hoping I get better one day I live in hope lolThanks for your tips ! X

[tattybogle]

Hypothyroidism can make you feel so bad because pretty much every cell of your body needs enough thyroid hormone to function correctly. To give you just one example , one of the diagnostic tests for hypothyroidism is an ankle reflex test. Muscles use energy not only to contract , but also to relax. When you do not have enough thyroid hormones in your muscle cells they do not have enough energy to relax as fast as they should, and this can be seen visibly as a 'too slow' return of the foot to normal position after the ankle reflex is tested.

Thyroid hormones effect the function of your digestive system , your heart , your lungs, your brain, your eyes, your nails , your hair growth, your skin, your tongue, the structures that help your joints move smoothly, the tendons in your wrists, the speed of your metabolism , your ability to maintain body temperature..... those are just the things i can think of off the top of my head, there will be many many more bodily processes that gradually stop working as good as they should when we become low on thyroid hormones.

It takes months/years for us to become bad enough for us to notice, and it also takes months after we get more hormones replaced for these things to be working properly again.

I hope this helps you understand why you feel so rubbish.

Thyroid hormone problems are a very slow thing , but they are also a very important thing.

If you have been on 25mcg levo for 2 months , you should have had a blood test recently to test the levels in your blood on this (tiny) dose.

Most people are started on 50mcg unless they are old and frail with a heart condition.

If this does not describe you, it is almost certain that you now need an increase in dose. Most people usually end up somewhere between 75 and 125, but it takes several months to get there.

Doctors start Levothyroxine gradually to allow you body to get used to having more hormone again , after it's not had enough for ages, and also because it takes 6 weeks for one of the things they test (TSH) to show the effect of the new dose, even though the hormones in the tablets (T4) will show in the blood the day you take them

If you have just had a blood test on the 25mcg dose and the doctors have not told you to increase dose, you need to know the results of that blood test.

It is not good enough to tell you that they can't give you the results because of Covid , yes they can . they could post them for example, or they could tell you how to get online access sorted out

The results you need to ask for are;

TSH (thyroid stimulating hormone) 0.00 [ ? - ? ]

and hopefully,

fT4 (free T4) 0.00 [ ? - ? ]

The [ ? -? ] is the lab range, this comes with the test, and the test result is no use without it.

At a push, they could even give you the results over the phone, but if you do this you must be absolutely certain that they get the numbers and the decimal points in the correct places and this can be tricky for receptionists who don't understand what they are reading.

Sorry if that's too much info all at once , hope you haven't got a headache as well now

Best Wishes

Tat

[Sunnydays11 in reply to tattybogle]

Thanks for your help and advice it’s helped me a lot to understand what’s going on as I don’t no much about me thyroid I just feel so bad after 4 years of this . Some days so bad I can’t carry on but now I have a bit of hope! Hope my gp can help me. Thanks again x

[SlowDragon Administrator]

Suggest you make an appointment with GP and request 25mcg dose increase

Standard starter dose of levothyroxine is 50mcg and being left on too low a dose can make you feel worse and worse

Unfortunately many GP’s think if your only “a little bit hypothyroid “ you only need “a little bit of levothyroxine “, but that’s incorrect

As soon as we start on levothyroxine, the feedback mechanism is broken and dose will need increasing slowly upwards.

guidelines on dose levothyroxine by weight

Even if we 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 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...

[Sunnydays11 in reply to SlowDragon]

Thank s for your help and advise it’s a lot to take in but think I’ll try vitamins as gp said my vitamin D is low, hate taking any tablets but when u feel so low you’ll try anything .Hope one day to feel better thanks a lot x

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after each dose or brand change in levothyroxine

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Ask GP to test vitamin B12, folate and ferritin levels at next test

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 did your recent 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/thyr...

[SlowDragon Administrator]

Did you get your results on vitamin D and previous thyroid results?

If not you need to get hold of them

Low vitamin D is EXTREMELY Common when hypothyroid and MUST be corrected

You need to know EXACTLY what these results were to know how much vitamin D to be taking

Frequently GP prescribes inadequate dose vitamin D

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

We need OPTIMAL Vitamin levels to help tolerate increase in levothyroxine

Levothyroxine doesn’t “top up” a failing thyroid, it will replace it. So it’s very important to increase dose slowly upwards until on or near full replacement dose

Far too often medics think “being a little bit hypo” only requires a small dose of levothyroxine.

This is incorrect. Taking levothyroxine the feedback mechanism means your own thyroid will reduce its output.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

[SlowDragon Administrator]

Roughly how old are you

Did you have cancer treatment for head, neck or breast area....yes radio therapy (or chemotherapy) can affect thyroid

Having been left borderline hypothyroid 6 years, it may be you need to increase slowly.....or vitamin levels may be very low

Important to regularly retest vitamin D, folate, ferritin and B12

Insist GP tests these at least annually

Or test privately

You will see thousands of U.K. patients forced to get full testing privately

[SlowDragon Administrator]

Roughly what age are you?

Low iron or ferritin are extremely common.

Have you had iron, ferritin, folate and B12 tested

How low was vitamin D

What dose vitamin D were you prescribed

Low vitamin levels are directly linked to being hypothyroid

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via NHS test option

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

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

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...