Is it normal to feel worse on medication ?

[Sally74]

Diagnosed 2weeks a go under active thyroid on 50m Levo and since taking feel 100% worse absolutely no energy not feeling/ emotion nothing a real struggle to get up each day and continue with my work. Is this normal I didn’t feel this bad before medication ?

[SlowDragon Administrator]

Welcome to the forum

Yes man6 people feel worse initially. Levothyroxine it’s like taking an aspirin...it takes minimum 10-14 days to start to have any effect and 6-8 weeks for dose to have full effect

50mcg levothyroxine is only a starter dose

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

Which brand of levothyroxine are you currently taking?

Do you have results from before starting on levothyroxine?

Many people find Levothyroxine brands are not interchangeable.

Have you had vitamin levels tested

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.

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

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

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)

[Sally74 in reply to SlowDragon]

Thanks for your reply I am on North Star brand , my bloods were 13 and just want to feel like I did before starting this meds I’ve tried to call Gp but can’t get an phone consultation until another 10 days ... never felt this lack of energy in my life , does it improve after time?

[SlowDragon Administrator in reply to Sally74]

TSH of 13 is quite high

It will take several weeks and probably two/few more increases in dose...

Dose is increased slowly upwards in 25mcg steps until symptoms improve .....Usually we need full replacement dose levothyroxine

Important to test vitamin levels too and thyroid antibodies

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 and antibodies at next test if not been tested yet

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

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...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

[Sally74 in reply to SlowDragon]

Thank you so much for all that information I’m not due. Looks until end of September but I’ll inquire what they will be testing for .

[SlowDragon Administrator in reply to Sally74]

you will see thousands of members on here test privately ....can be like getting blood out of a stone to get GP to test vitamin D ....despite vast majority of thyroid patients being seriously vitamin D deficient

Just vitamin D test here - £29

vitamindtest.org.uk/

[SlowDragon Administrator]

Even if we frequently don’t start on full replacement dose, (Too much of shock to system) 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.

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...

[Lancsrc12]

I’m not in the same boat but there are so many people here who can help you. Best luck.

[Sally74]

Thank you

[pandacat2]

I can totally empathise with you, I felt the same when i was on 50mcg and I came here asking the same question. healthunlocked.com/thyroidu... Now am up to 125mcg/day 7 months later and am finally feel relatively ‘normal’ most of the time. It’s a slow process but you’ll get there. Nothing like having extreme fatigue to teach you how to be patient (well in my experience anyway).

I read something somewhere – and it could be completely wrong – that your thyroid glad produces T4 and T3 (much less T3) and that the reduction in the TSH hormone as we get to the right dosage of T4 causes the thyroid gland to stop producing the little T3 it was, therefore making you feel worse. Once your T4 levels (with good conversion to T3) are sorted then this will all even out. I got loads of advice from the wonderful admins here along the way.

My doctor very recently learned the info SlowDragon posted above regarding '1.6 micrograms per kilogram of body weight per day' , we were having a bit of a battle about dosage before that. You can calculate what your final dose should be from this.

[UllieBob]

I’m as new to this as you are Sally74 and I absolutely got so sick after starting Levo that I thought I’d developed ME. I’d have around 4 days in bed and 2-3 days up and about followed by 4 days in bed again. This went on for 2 months before I started menopause patches which surprisingly took away half the symptoms (many meno symptoms are the same as hypo) but I am still regularly utterly fatigued almost 2,5 months later. Next blood test due mid Sep. People say it will get better - although it feels impossible now. You’re not alone.

[SlowDragon Administrator in reply to UllieBob]

Make sure to get thyroid tests as early as possible in morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before test

Dose levothyroxine should be increased slowly upwards in 25mcg steps until on full replacement dose and all symptoms resolved.

Essential to regularly retest vitamin D folate ferritin and B12 too

Come back with your own post once you get results

[MrsQ20]

I’ve just increased my dose again (second increase after starting on 50mcg in Jan) Each time it’s made me feel worse before feeling better!so I feel really rough again! So frustrating but when you feel better it’s worth it. You will see lots on here about it but going gluten free and taking vitamin supplements has really helped me feel generally better.

[MrsQ20]

Everyone says it takes quite a while to get to right dose- it is so frustrating. Pandacat2 said “Nothing like having extreme fatigue to teach you how to be patient“ that is sooooooo true!

[Sarfran]

I was diagnosed in April with TSH 70.

That's exactly how I felt and it was awful. Changes in medication can have a temporary negative effect but don't give up.

I still have days when I struggle and suspect that, for me, it's the way it's going to be. However I now have over 50% of days where I feel better than I have in many years, and that makes up for the average and less good days.

I have found that I really do have to pace myself, even on really good days, otherwise I pay for it. As I'm a doer, that's a struggle!

The result, so far, is that life is much better. I socialise again and from not being able to work I'm now setting up my own little business which allows me to control the hours I work.

I know how difficult it is to stay positive but gathering knowledge about the condition and using it to help manoeuvre your GP in the right direction, if you can, is very important. The folks on here are fabulous and so well informed.

Keep going and you will improve. 🤓

[Thyb]

Exactly same has happened to me...How did you feel before taking levo?

[Angelic69]

Absolutly yes, my mental health and vision were mostly effected. My vision became very bad my eyes felt very weak and i could not hold a gaze for very long at all. The slightest movement, a car passing by, a tree moving in the wind outside, people waliking past my window disturbed me and i found it impossible to focus on any one thing. At a recent eye examination i was told that my eyes no longer work as a team, but separately i guess one is watching the cyclist go by whilst the other is fixated at the tree blowing in the wind?lol I can focus much better now that i am on combination therapy which is levo and liothyronine together.

There were two great improvements which occurredwhilst i was taking levo, one was the strength in my hands returned and the other was my phsica; energy improved ten fold.

[Tythrop]

To all here:when you were struggling after starting on meds, did your symptoms include constipation?

Also, ref weak hands:I have this, especially thumb pain. Is this a thyroid "thing"?