When will I feel better?: Hi. I’m a newly... - Thyroid UK

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When will I feel better?

Chockydooda
Chockydooda

Hi. I’m a newly diagnosed hypothyroid patient and on levothyroxine for 3 months (Currently 50mg). I think I have felt rough for many years but just put it down to caring for my now 21 year old daughter with cp. So far I actually feel worse. I used to love the feeling I got after exercise but now after 2 years of feeling that high I now feel totally wiped out. I also have trouble clearing the back of my nose/throat and swallowing , especially at night. Does anyone else have these issues and any remedies? I’m hoping I will get my energy back soon. Thanks for any advice.

T4 11.9 TSH 5.11

11 Replies
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Well, it's doubtful you're ever going to feel well on 50 mcg levo. It's just a starter dose. When did your doctor tell you to go back for a retest? It should have been six weeks after starting the 50 mcg.

You also need to have your nutrients tested, because hypos often have nutritional deficiencies - no matter how good their diet. So, when you go back for your retest, ask to have vit D, vit B12, folate and ferritin tested. If they are sub-optimal, they will contribute to your symptoms.

It can take a long time to find your optimal dose of levo - and even longer if your doctor doesn't know what he's doing - and I'm not impressed by your doctor leaving you on a starter dose for three months! The protocol is to retest every six weeks, and increase the dose by 25 mcg, until all the symptoms are gone, and the patient is well. :)

My Vit B levels were apparently good as were my Vit D levels. I do eat well and take regular supplements. My ferritin was on the low side. I’m sorry I did not make it clear with my doses - I was started on 25mg and then after six weeks was put up to 50 as my TSH had only marginally improved. I have just had some more bloods taken and you prob be impressed as my GP also ordered an antibody test and T3. Hopefully by Christmas I should have a clearer idea of what is happening and a pathway to feeling amazing. If I’m not well I cannot give my daughter the quality of life she deserves and after years of trying to get the right support the fact remains she only has me to make that happen. I’m nearly 48 - too young to feel so tired and achey. Thanks for replying 😊

Who said they were good? Your doctor? You cannot just take his word for it. You have to get the results and the ranges and see for yourself. If doctors know little about hormones, they know absolutely nothing about nutrients. What supplements do you take? How much? If you want us to help you feel better, you need to give all the details. We can't guess anything.

You were started on too low a dose. 50 mcg is the normal starter dose. So, this is an indication of how little your doctor knows about thyroid. And, no, I'm not impressed. He should have done all that the first time he tested. But, even if he's ordered them, it remains to be seen if the lab will do them. They have the last word on testing.

So, do make sure you get a print-out of your new results. With the ranges. You'll more than likely need a couple more increases before you start to feel well. This is a long, slow journey, and there are no short cuts, I'm afraid. :)

Thank you Greygoose! I need someone like you in my life as I am too trusting and too tired to fight. I will request a full printout of all my results next time I visit the Dr. I just thought the levels were probably just out of normal range so would improve quickly with drugs. I had had my thyroid tested a couple of times before I was diagnosed and was told they were normal. I will get a copy of those and get back to you. 👍

You're not taking drugs, you're taking thyroid hormone. And nothing happens quickly with hormone. But, we'll know more when you get the results and ranges. :)

shaws
shawsAdministrator

Your dose of 50mcg is only a starting dose and every six weeks you should have a blood test with an increase of 25mcg of levothyroxine should be prescribed. The aim is TSH of 1 or lower. You need a new doctor or you have to get a 25mcg increase every six weeks after a blood test until TSH is 1 or lower.

We cannot relieve our clinical symptoms without sufficient thyroid hormones, i.e. T4 (levothyroxine) has to convert to T3 (liothyronine) and it is T3 which is needed in our millions of T3 receptor cells in order for us to get relief.

Once diagnose - the aim is a TSH of 1 or lower but doctors are so poorly trained we continue to suffer if dose isn't increased.

When you give your results, you always have to put the ranges as well. These figures are in brackets after the results. Labs differ in their machines and have different ranges so they are very important.

thyroiduk.org.uk/tuk/testin...

Are you aware that all blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take afterwards.

Your GP should also have tested B12, Vit D, iron, ferritin and folate and all should be optimum.

Chockydooda
Chockydooda
in reply to shaws

Thanks for your advice. I wasn’t aware of the fasting time between last dose and blood test. I will make sure I book the test early in the morning. I have usually timed my appointments around the personal care timings of my daughter’s care needs. I mentioned to the Dr that quite a few members in our family have autoimmune diseases (myasthenia gravis, IBD and MS) and asked whether we could have a shared problem gene. We all seem to have allergies. She has tested both my sons for thyroid as they have similar symptoms. I have always been quite well apart from tonsillitis when I was very young and vestibular migraines 8 years ago so having to be on a drug for the rest of my life has been a bit of a shock!

shaws
shawsAdministrator
in reply to Chockydooda

☺️Levothyroxine isn't a drug it is a synthetic thyroid hormone. Levo is an inactive hormone and it's job is to convert into Liothyronine - commonly known as T3.

T3 is the Active Thyroid Hormone and is needed in the millions of T3 receptor cells we have in our body, without which we and our body cannot function. The most T3 is required by our brain and heart.

That's why, on this forum, we prefer a Free T3 and Free T3 blood test but they're rarely tested in the NHS.

thyroiduk.org.uk/tuk/testin...

We have to have an increase in levo every six weeks until TSH is 1 or lower. Many doctors are 'happy' and believe anywhere in the range (the top which is around 5) that the patient is on a sufficient dose. In these 'modern times' they don't know any clinical symptoms and it was through symptoms, before blood tests were introduced along with levothyroxine, that doctors prescribed NDT - natural dessicated thyroid hormones as there were no blood tests back then until they were relieved.

You need always to include the reference ranges (the figures normally in brackets) with your test results, as they can differ between labs; but even without them, it's clear that your TSH is too high and your FT4 is too low. Which is probably why you feel wiped out. As others have advised, you're in need of a dose increase and then retesting in another 6 wks time

Thank you. I will ask for the ref ranges when I go back for my next results. All my other bloods were within range but my ferritin was on the low side. I wasn’t surprised as my periods have been very heavy and I have felt particularly tired that time of month. I think I am probably peri menopausal too but have been advised against HRT due to previous breast lumps.

SlowDragon
SlowDragonAdministrator
in reply to Chockydooda

Heavy periods are classic sign of being hypothyroid

50mcg is only a starter dose dose of Levothyroxine.

See GP for 25mcg dose increase and bloods retested in 6-8 weeks

Dose is increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

have you also had thyroid antibodies tested?

Always get actual results and ranges for vitamin D, folate, ferritin and B12 tested.

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

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