Hypo or no! : I was diagnosed with hypothyroidism... - Thyroid UK

Thyroid UK

126,449 members148,333 posts

Hypo or no!

Lamplamp profile image

I was diagnosed with hypothyroidism for about 30 years, and for several reasons stopped taking my tablets. Next test check I was told I was fine. I told them I wasn't taking my levothyroxine for many months and they said its not possible to get better from it. Had another test, still not taking tablets, they say my level is fine.

Can this be right? . Other members of my family had this for life. One doctor suggested that I must not have needed the medicine at all. Very confused. And btw I am really tired by mid morning always.

Anyone had this issue?

15 Replies

And I used to be on 125mg a day.

Do you know if your underactive thyroid is caused by Hashimotos? Levels go up and down withthat.

Lamplamp profile image
Lamplamp in reply to Wetsuiter

I hadnt even heard of that until I found this site.

Marz profile image
Marz in reply to Lamplamp

Time to find out - there is so much we can do to help ourselves. Can you have Private testing ?

Do you feel well? No more symptoms?

Lamplamp profile image
Lamplamp in reply to PPower

Really tired all the time. Just want to go to sleep by about 11.30am each day. But maybe that a old age thing (53). Joint aches and pains, but I guess thats defo old age. Who knows!!

PPower profile image
PPower in reply to Lamplamp

Wanting to go to sleep by 11:30 a.m. is not a sign of "old age." You can't just "trust" your doctors, you are in charge of your health. Most were undertrained when it comes to thyroid health so being "fine" per your doctor is meaningless. Break this down into your next steps. Get your last labwork results from your doctor, they have a responsibility to give it to you if you ask. How long ago were those labs, btw? Once you get your results, post here. But first, call your doctor's office and get a copy of your results.

Are you able to post the results with ranges that are 'fine' ?

Lamplamp profile image
Lamplamp in reply to Marz

I don't actually know the results. I always just trusted them.

Marz profile image
Marz in reply to Lamplamp

We cannot offer advice without your results - as we would only be guessing. You are legally entitled to have copies of your results so ring the surgery and request them - you do not have to give a reason. Say you will be along in a few days to collect.

Time to take control of your own health 🤔

Are you taking any other medication ? Supplements ?

Keep in mind that when a doctor tells you your thyroid test was fine, what (s)he really means is that your TSH (Thyroid-Stimulating Hormone -- made by your pituitary gland) result was "in range." This does NOT (necessarily) mean that you are NOT hypothyroid.

1. In the first place, the ranges have been established on all the sick people the doctors sent to your lab for testing. They rarely ask for thyroid testing on someone who appears to be 100% healthy. When an experiment was run on selecting patients with no history of thyroid problems and sending them for testing TSH, the results were a much, much more narrow range. The thing is, that perfectly healthy people tend to have a TSH that is about 1. In the U.S., you are considered hypo if your TSH is above 4.5, and even above only 3.5 in some areas. In the UK, the practice guidelines recommend withholding treatment until the TSH is over 10.

2. TSH does not tell the whole story. You really need to find out how much of the hormones that are produced by your THYROID glad are circulating. Also, much these hormones tend to be bound, and therefore unusable. So what you really need to look at is not how much TOTAL hormone, but rather the FREE (unbound), thyroid hormones are circulating. The Tests for these are called "Free T3" and "Free T4". The numbers refer to the number of iodine atoms connected to the hormone molecule. The thyroid produces mostly T4 (thyroxine) which is a pro-hormone. The liver and some other parts of the body remove one of the 4 iodine atoms, creating T3 (triiodothyronine).

You could have an in-range TSH, but if your FT3 or FT4 are low in range, you could have many hypothyroid symptoms.

It is the presence or absence of FT3 that works at the cellular level controlling everything in your body. If your FT3 is low, you will have difficulty regulating your body temperature. Your metabolism slows down. You may experience fatigue. You may even experience sluggish thinking. thyroiduk.org.uk/tuk/about_...

Most people don't feel well unless their FT3 and FT4 are above mid-range.

sluggish thinking is my thing! I am usually cold, much to my hubbies disgust. Have problems trying to get right temperature in bed. I usually have an extra two blankets on my side of the bed to get warm enough to sleep. Then wake up at night and have to remove one or more blankets and then wake up later feeling cold and have to layer up again. lol.

I cant say I feel unwell, just tired, maybe stressed.

But my point is that one doctor told me that I cant possibly get better with an underactive thyroid and now I feel like I been using a drug that maybe I never needed. I have had several tests and they are quite happy that I dont actually have an underactive thyroid anymore. So I just very confused. Although I did feel much better after being on medication for a while.

Marz profile image
Marz in reply to Lamplamp

You sound Hypo - only seeing your results will help others help you ...

Marz profile image
Marz in reply to Lamplamp

Without the results how would you know that what they are saying is true ?

SlowDragon profile image
SlowDragonAdministrator

Never accept just an opinion on test results.

ALWAYS get actual results and ranges

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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 thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

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

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

For thyroid including antibodies and vitamins

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 you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Come back with new post once you get results

You may also like...