New to hypothyroid: Hey all, newbie here. I've... - Thyroid UK

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New to hypothyroid

Witchgurl31 profile image
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Hey all, newbie here. I've been feeling unwell for about a year, exhausted, weight gain, hair loss, joint pain etc and put it down to 4 kids and full time nights. Was tested last week for thyroid and my results were TSH 38.6 and T4 9. I've started on 25mg levothyroxine. Can anyone tell me how long they take to get into the system because I still feel rough as a badgers ass ☹

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Witchgurl31
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SeasideSusie profile image
SeasideSusieRemembering

Witchgurl31 It takes about 6 weeks for the full effects of starting Levo (or an increase in dose) to be felt. However, you have been given an extremely small starter dose at 25mcg. Unless you are elderly or have a heart condition you could easily have been started on 50mcg.

You will need retesting with 25mcg increases every 6 weeks until your symptoms abate and you feel well. Unfortunately, it's not a quick fix and can take months to reach your optimal dose. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

When having thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or two avoid a reduction. TSH is highest very early in the morning and lowers during the day, it also lowers after eating.

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, hot chocolate, etc., for an hour, as absorption will be affected. Any other medication/supplements should be taken two hours way from Levo, some need four hours.

Us hypos often have low nutrient levels, so ask GP to test

Vit D

B12

Folate

Ferritin

and if Ferritin is low then you need an iron panel and full blood count

All nutrients need to be at optimal levels (not just in range) for thyroid hormone to work.

Witchgurl31 profile image
Witchgurl31 in reply to SeasideSusie

Thanks for your reply! Omg really? 6 wks more of feeling like this? 😣 I'm 31 so maybe a higher dose would be better. My doc did comment my tsh was quite high?

I take my Levo at 7am before I get up or before I finish work.

I'm waiting on an ultrasound as my throat is swollen although it seems to be reducing since taking Levo for 5 days? Could it really be affecting it that quickly?

SeasideSusie profile image
SeasideSusieRemembering in reply to Witchgurl31

6 wks more of feeling like this?

Sorry to say, no, it will be a fair bit longer. You will need to be on quite a bit more Levo before you start feeling well. As I said, it can be months before you find your optimal dose, and even though your results might look good, feeling good can take longer.

As you will be having an ultrasound and your throat is swollen, but now reducing, I would ask for thyroid antibodies to be tested as well as vitamins and minerals to see if you have autoimmune thyroid disease. There are two types - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). The NHS rarely does TPO and almost never does TG. However, you can be negative for TPO but positive for TG so it's important for both to be tested but I believe only an endocrinologist is likely to do both.

Royo profile image
Royo

It can take a while so be patient. At least you have the diagnosis which is the hardest thing in the world to get. More so because you are female. GP mostly say all’s ok even when medication is needed. The dose may be to little for you. If it was your GP who diagnosed you think about seeing a thyroid specialist. I did not and trusted my GP . Seven years after being on T3 and T4 of different doses. I became ill and was diagnosed with b12 deficiency . I have b12 injection every 3 months and it has changed my life. Sorry a bit of a ramble but lots of things intermingled. Because I had an issue the new GP refers me to a specialists. He increased my T4 and took me off T3 over time. I am more stable than ever. The long term side effects of T3 must justify taking it. When you start 25 is given you will need lots of blood tests over time to get the does correct. The GP will get fed up and leave you on something you may not be happy with. The specialist will not stop until you are on the correct dose. I hope

My ramble helps

Witchgurl31 profile image
Witchgurl31 in reply to Royo

I suppose im lucky then as i just gave him a list of symptoms, mentioned my mum has UAT and he said immediately it was probably hypo. He also said he'd see me in 3 months to test again. Seems abit long to wait don't you think?

Royo profile image
Royo in reply to Witchgurl31

No not really but is after a few weeks you are not improving go back and see him. It all comes down to cost blood tests etc cost money and all practices try and save NHS money. But does not help us, it does make me keep going back for answers though.

SeasideSusie profile image
SeasideSusieRemembering in reply to Witchgurl31

3 months is too long. It should be 6-8 weeks tops. As it takes 6 weeks for the full effects of starting Levo or an increase in dose to be effective, there is no point in waiting any longer to repeat the test to check your levels. It just prolongs the agony when you know you will be having increases for some time yet.

Ace1983 profile image
Ace1983

I was diagnosed with an under active thyroid in July last year, went through 6-8 weekly blood tests for at least a year with levothyroxine increased gradually over the months. I'm finally on 150mcg and my last 4 blood tests have come back 'normal' but honestly I still feel like rubbish a lot of the time. Fatigue is a nightmare still and muscle/joint pain is still an issue. I was told 6 months ago that I was vitiman D deficient so that would most like explain my reoccurring symptoms but even those results are coming back normal now so I'm left more than a little frustrated. I hope your symptoms do settle soon though and you start to feel better.

SeasideSusie profile image
SeasideSusieRemembering in reply to Ace1983

Ace1983 I don't want to take Witchgurl31's thread off topic, but if you make your own thread and quote your now 'normal' Vit D results then I think you might find that you are possibly still in either the Deficient or Insufficient category which is why you're still getting muscle and joint pain.

If any other nutrients were tested ie B12, folate, ferritin, then post those results as well, and say what you are supplementing.

Also post your thyroid results.

I think you probably feel rubbish because you are either under medicated or your nutrient levels aren't optimal, which they need to be for thyroid hormone to work properly.

Ace1983 profile image
Ace1983

Thank you for your reply. I shall speak to my doctor this week and get copies of the results so I can post a new thread 😊

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