feeling exhausted

[1lolabear]

Hi all

I have been on 50 mg of levothyroxine for a week now having been diagnosed. Can anyone shed some light to why I am feeling worse ? I’m absolutely exhausted and foggy. When will I start to feel better ?

[SlowDragon Administrator]

That’s an impressively high TSH

Has GP referred you to an endocrinologist?

Standard starter dose of levothyroxine is 50mcg (not 50mg)

Which brand of levothyroxine have you started on

It takes 6-8 weeks for each dose increase to have full effect…..normally bloods are retested 6-8 weeks after each dose increase

However your GP could perhaps consider increasing levothyroxine sooner …..after 4-6 weeks perhaps…..up to 75mcg

Approx how much do you weigh in kilo?

Approx age?

Are you currently taking levothyroxine waking or bedtime

Has GP tested thyroid antibodies, vitamin D, folate and ferritin

If not, they need testing NOW

Can see you were self injecting B12 …..is that still the case

Are you also taking daily vitamin B complex

[1lolabear in reply to SlowDragon]

Hi.

My age is 57

Weight 70 kilos

Brand Accord

yes I am still self injecting, and no I haven’t been referred to anyone.

I take my medication first thing in the morning and hour before eating and drinking .

I haven’t been tested for any antibodies or vitamins .

I did ask about being tested for t3 but he said they only test for that if over ? Obviously this is all new to me so I am going in blind when speaking to the GP .

Any advise would be very much appreciated

[SlowDragon Administrator in reply to 1lolabear]

Make a new appointment, or email in and request blood test form to test thyroid antibodies for autoimmune thyroid disease, vitamin D, folate and full iron panel test for anaemia NOW

Low vitamin levels are strongly linked to being hypothyroid

Improving low vitamin levels helps how levothyroxine works

You’re going to need several further increases in levothyroxine over coming months

Dose levothyroxine is increased SLOWLY upwards, usually in 25mcg steps until TSH is below 2 and Ft3 and Ft4 are at least 50% through range

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Usually bloods are tested 6-8 weeks after each dose increase

Guidelines on dose levothyroxine by weight of 1.6mcg levothyroxine per kilo of your weight per day suggests you are likely to eventually be on approx 112.5mcg per day

Some people need higher dose…..some less

It’s going to take several months to recover from being extremely hypothyroid

Hormones can’t be rushed

No point testing Ft3 at this stage …..Ft4 is extremely low

Only testing TSH, Ft4 and Ft3 as we get up near full replacement dose

Did GP test adrenal hormones before starting on levothyroxine

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Jaydee1507 Administrator]

Looking back on your old posts I see you have suspected thyroid for quite a few years. Such a shame you have had to wait for this to happen to get diagnosed and treated.

Levo won't really start working properly until you've been taking it for 2 weeks. Even then, at 50mcgs which is a low dose you will probably be feeling lots of symptoms. There can be quite some lag between starting meds or an increase and feeling any improvement at all. It's a very long waiting game. 😐 Maybe by spring time you might feel a bit different. Depends how often your GP wants to re do bloods. 6 weeks is a good time.

[Regenallotment Ambassador]

sorry to be the one saying this, I felt worse on 50mcg than I did on 25mcg, 75mcg was a game changer but by then my vits were also more optimal, my gut health has improved from AI diet etc. I’ve just gone onto 100mcg, Tried Accord first but had a gastric reaction (burps/farts/sore mouth/sticky bowel movements) so the GP is ordering more Teva for me as that seems to suit me better. It’ll be about 2-4 weeks till I know if I feel better/different. Wishing you well 🦋💚🦋

[humanbean]

With a TSH that high and a Free T4 that low you must have been feeling dreadful for a very long time.

It can be quite a long-winded process to get your Levo dose right for you and unfortunately it can't be rushed. There are quite a few reasons why you might feel worse now than you did before you started.

1) Levo replaces your own thyroid output, it doesn't top it up. There is no way for you to know in the short term how well you are absorbing your thyroid hormones.

2) It might have been better if your doctor had prescribed a higher dose of Levo (e.g. 75mcg or 100mcg) since your TSH is so high and your Free T4 is so low. But a lot of people find it hard to tolerate thyroid hormones in the beginning, and can't cope with a high dose at the start, so it is a gamble either way.

3) Given how bad your results are I think your doctor should give you your first re-test after just four weeks, and perhaps your second re-test another four weeks after that. With each re-test your dose should be raised by 25mcg.

4) When you get closer to your optimal dose (which could be anywhere from approx 125mcg - 250mcg Levo per day - it could even be higher, but that is not very common) you might have to wait much longer between re-tests and dose increases - 6 - 8 weeks to begin with then perhaps 10 weeks later.

5) There are several brands of Levo tablets available for prescription in the UK. They all have the same active ingredient but they also have other ingredients that might or might not suit you e.g. Lactose, Mannitol, Acacia. All UK medicines and hormones are gluten-free.

6) helvella , one of the admins on the forum, has written a reference document which contains tons of useful reference information about thyroid treatment and thyroid disease :

healthunlocked.com/thyroidu...

7) helvella has also written a document listing all the thyroid medicines available in the UK and many from other countries :

healthunlocked.com/thyroidu...

8) One thing that hypothyroidism does to sufferers is to reduce stomach acid. This means that your food may be getting poorly broken down and digested. This leads to low levels of vitamins and minerals. In order to tolerate Levo it is essential to test, improve, and optimise several nutrients. These are vitamin B12, folate, vitamin D, and ferritin (iron stores). If your ferritin is low or high you would probably benefit from getting an iron panel done. Once you get these test results you should post the results in a new thread and ask for feedback.

[1lolabear]

Thank you all .

I really appreciate all the time and advice you have put into all the information you have given me .

I have been in touch with my local private hospital who has a cancellation for me to see a endocrinologist in the morning.

I will update you on the outcome .

Many thanks again x

[ali2341]

50 mcg made me tired as hell and i put on weight, keep an eye on weight when i went too 100mcg then weight stopped and felt better at the time,