Levothyroxine without prescription : Hi, I been... - Thyroid UK

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Levothyroxine without prescription

0002 profile image
0002
12 Replies

Hi,

I been trying to get treatment from my GP because I have hypo symptoms. They get severe to the point where can’t do anything. I have cyst and inflammation in my thyroid. TPO antibodies are high. So it seems like is Hashimotos disease since is also runs in family . Although my doctors don't think I need treatment since TSH levels aren't too high and FT4 in range. So they wait.

I been waiting for many years to find a way and it don’t get better by waiting . I took a risk to try levothyroxine without prescription. I been taking 50mgc for almost 4 weeks and I still don't feel much improvement. I know I should have be followed by specialist ,but they don’t do anything. And not treating thyroid can be bad too.

I just wondering how long dose it take to work or what if it dosn't work? Is it safe to try a higher dose if still feel like have hypo or it could be too risky? How t know if is too much or too little?

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SlowDragon profile image
SlowDragonAdministrator

What were actual results and ranges on TSH, Ft4 and thyroid antibodies BEFORE starting on levothyroxine?

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 levels NOW ....or test privately alongside thyroid

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)

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

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

0002 profile image
0002 in reply to SlowDragon

Hi, thank you for the the detail respond :) Can you see my old post? I have posted all the results

0002 profile image
0002 in reply to SlowDragon

Also my GP said come back to take thyroid test in January

SlowDragon profile image
SlowDragonAdministrator in reply to 0002

Well you would have to stop levothyroxine for at least 8 weeks as minimum to get base result

SlowDragon profile image
SlowDragonAdministrator in reply to 0002

Getting vitamins tested now via GP or privately

Likely very low and improving vitamin levels is frequently first step

SlowDragon profile image
SlowDragonAdministrator

See flow chart on top of page 2 re starting on levothyroxine

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

50mcg is only a starter dose of levothyroxine

Bloods should be retested 6-8 weeks after each dose increase

Come back with new post once you get results at next test

Likely to need further increases

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 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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

gordies profile image
gordies

Here we go again, another clueless GP. If you have Hashimoto's your TSH is utterly irrelevant, end of! Your FT4 is in range - whoppeedoooo! GROAN!! Your TSH can be up and down like a yo-yo because of Hashi's, and whilst your fT4 can assist it is your fT3 that is more useful (the actual amount of hormone in your cells - the stuff keeping you functioning), along with B12, folate, vitamin levels, Vitamin D and ferritin (the inflammation marker).

I have had Hashi's for years and know only too well the nonsense we have to go through with the great uneducated just to get back to feeling partially alive.

Personally, I think Levothyroxine is a waste of time, it is synthetic (made in a lab). I did not even begin to feel part human again until I managed to get Nature Throid. However, if your vitamin levels, and levels of above mentioned are away to pot, then Nature Throid may not 'seem' to work for you, as those other levels need to be optimal.

B12 - classic one - in Japan they treat you straight away if it is low. Over here, if you fall in the (outdated and useless) range they say you are 'fine'.

Good luck with this - change GP if you need to - took me several GP's until I found one that had half a clue and things finally began to unravel.

TPO is relatively useless without TgAb being checked as well, and have you had an ultrasound to check your thyroid? TgAb on the NHS is like trying to find hens teeth, I ended up paying for a full suite, and used the results to fight my corner.

50mcg is a tiny amount as well, and is highly likely not even scratching the surface. Do you have access to t3 on its own? That may provide you with a quicker idea, but it is extortionate to buy in the UK, but pretty cheap in Europe, but it is getting it now that is the bigger problem.

You are not alone - don't worry about that!

0002 profile image
0002 in reply to gordies

Yes, I had a ultrasound scan and my GP said “there is a small cyst and some inflammation, but nothing nasty” the last test FT3 5.7 range [3.8-6.0]

Serum TG 86.3

TgAb <20

I'm not sure sure what it means?

Mybestcolor profile image
Mybestcolor

I have been on thyroid meds from 1999 and I was on 250 mg now I'm on 150 and feeling pooly

Mybestcolor profile image
Mybestcolor

Docters just wont listen to me and I feel poorly all the time

11Ananke11 profile image
11Ananke11 in reply to Mybestcolor

It's pretty grim isn't it? I told my GP I was having symptoms, she said I could bring my next test forward and sent me on my way.

Test results came back with high TSH and positive antibodies, her recommendation was "tell patient to test again in one year" I asked the staff member who called with the results if that was still the case even f I was having symptoms and she growled through her teeth and repeated THE .....DOCTOR.....SAID.....TEST.....AGAIN .....IN.....ONE ......YEAR. My god, what chance do you have, no wonder people start trying to medicate themselves.

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