I’m so sorry, this has probably been asked 1000... - Thyroid UK

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I’m so sorry, this has probably been asked 1000 times (test result help)

AbigailHolywood profile image

Good morning everyone.

I’m a 33 year old female and for a long time now have had what I suspect is some form of hypothyroidism. Excessive tiredness, feeling low, always cold and so on. My last blood tests were T4 11.2, TSH 1.3

The doctor I had at the time said they were normal and sent me on my way. As my symptoms have gotten more difficult to cope with I decided to try my new doctor and she was surprised my previous GP hadn’t followed up with those results. I’m going again on Monday for another set of blood tests and hopefully will get more information and go from there.

I’m just wondering, if you have had similar numbers what your diagnoses / treatment has been? If those numbers are likely to lead to any sort of diagnosis etc.

I’m so used to having my symptoms brushed under the carpet that I don’t hold out much hope even though the new GP seems much more switched on. However, I wanted to reach out and see if I could find anyone else with similar numbers who went on to get a diagnosis and how they are doing now they have treatment.

Many thanks for reading x

48 Replies

We need reference ranges with those results as they vary from lab to lab.If the upper normal limit for FT4 is 22 or 23, your FT4 is low. A person with a a healthy thyroid usually has midrange FTs. But it seems some labs use the ref range 7-15, in which case your FT4 would be midrange. Which it is important to include reference ranges (they are mentioned in brackets on your lab sheet).

However, since your TSH came back at just over 1, most doctors will dismiss the possibility of thyroid disease as they have been told that the TSH needs to be elevated (in the UK, often above 10, in other countries above 3 or 5) to diagnose hypothyrodism.

You would need to have both free T3 and free T4 tested at the same time, along with a new TSH reading, and anti-TPO and anti-TG to see if you are in the early stages of autoimmune thyroiditis.

Did your new doctor say why your previous doctor should have followed up on these results? I am asking as most doctors only look at the TSH and yours is well in range.

There is a form of hypothyrodism called central hypoT where the problem is not the thyroid gland itself but the hypopuitary gland which produces TSH. In that case, both the TSH and FT4 will be low. I don´t think many GPs know that so will often miss that diagnosis. Others who know more about it will hopefully chime in.

AbigailHolywood profile image
AbigailHolywood in reply to

Such a rookie mistake I’m sorry, I should have included them! Here they are:

Serum free T4 level 11.2 pmol/L (12-22)

Serum TSH 1.31 mU/L (0.27-4.20)

My new doctor mentioned the secondary hypothyroid as being a possibility as T4 and TSH being low together could be an indicator, she was very good and much more open to looking at the results as a whole rather than just the TSH and did say she is was surprised my precious GP hadn’t done so and it’s pretty well known and encouraged now for doctors to look at the whole results list for a better picture.

Thanks so much for replying x

in reply to AbigailHolywood

OK, so your FT4 levels are very low!

I am very happy to hear that your new doctor is open to exploring other possibilites as it is not normal to have such low FT4 levels. No wonder you are not feeling well! Unfortunately, too many doctors are still TSH-obsessed and believe the TSH gives us the whole picture.

Will you be referred to an endocrinologist? I think that would be the next step if your GP suspects secondary hypo.

AbigailHolywood profile image
AbigailHolywood in reply to

Thank you so much for replying I really appreciate your time! It’s weirdly validating to actually have someone say yes, those ARE low. I had been reading this forum on and off for a while and I had expected my GP to say they were fine and not want to investigate, so I was incredibly pleasantly surprised that she seemed very knowledgable in regards to thyroid issues and wanted to delve into this and help me. I did ask about a referral to endo but she wants to take a good look herself first and see if this is something she can help me with because (and I quote!) referrals are taking a massive amount of time and she is finding them being quite dismissive unless it’s a huge obvious issue, they much prefer these “minor” issues to be dealt with at the doctors surgery.

Would you be able to talk me through a little bit (if you have time please don’t feel obliged!) of what symptoms one would expect to be feeling? I’ve spent so many years telling myself I’m clearly fine if the doctor says so and it couldn’t possibly be my thyroid, so matching up the fatigue and anxiety and irregular cycles still feels like I’m im pushing my luck if that makes sense? X

in reply to AbigailHolywood

There are hundreds and hundreds of hypo symptoms and the lists keeps getting longer every day! Not everyone will have all symptoms, though.Common complaints are weight gain/inability to lose weight, feeling cold, dry, itchy skin/eczema, brittle nails, hair loss, constipation, cold hands and feet, fatigue, needing more sleep but still feeling tired, depression, anxiety, memory and concentration problems, fluid retention, puffy face, dark circles/bags under your eyes, irregular/missed periods, heavy periods, infertility, muscle weakness, high blood pressure and/or cholesterol levels...the list goes on and on, and many members here would be able to add things to it.

AbigailHolywood profile image
AbigailHolywood in reply to

Yes, I can honestly say I have all of those to varying degrees. It makes you wonder how people with significant thyroid issues get up and get on with their day feeling so rubbish. Thanks again for your help it’s genuinely very appreciated! I’m on the thyroid uk website now and reading all I can do better educate myself, bit of a learning curve isn’t it!

Hi AbigailHolywood,

It is great to hear about a GP taking your thyroid symptoms seriously and also having an interest in wanting to help you feel better!

Makes a refreshing change from some of the experiences we read about on the forum!

Best wishes.

humanbean profile image
humanbean in reply to

Central hypo and secondary hypo are the same thing.

They aren't exactly the same thing, although they are related.

Primary hypothyroidism occurs when the thyroid fails.

Secondary hypothyroidism occurs when TSH production from the pituitary fails.

Tertiary hypothyroidism occurs when TRH production from the hypothalamus fails.

TSH is Thyroid Stimulating Hormone and is also known as Thyrotropin.

When people develop secondary or tertiary hypothyroidism it is difficult or expensive (I don't know which) to find out whether the pituitary or the hypothalamus is responsible for the failure. (They are both small organs in the brain (roughly behind the nose, and next to each other). So secondary and tertiary hypothyroidism are collectively referred to as central hypothyroidism. The doctor and the patient won't necessarily know which of the two is responsible for the hypothyroidism. But the treatment for all forms of hypothyroidism is to replace the missing thyroid hormones, T4 and T3. The difficulty with central hypothyroidism is that it can't be identified by just testing TSH, which is what doctors are told is the only test required.

I sometimes wonder if patients with central hypothyroidism have ever been given anti-thyroid drugs just because their TSH was very low.

There is another issue, and that is when someone has central hypothyroidism but their pituitary or hypothalamus is working, just isn't working well enough. So TSH does get produced but levels aren't indicative of the degree of hypothyroidism.

In central hypothyroidism TSH could be anywhere between 0 and slightly over the range. The way to diagnose would be to ignore TSH and check Free T4 and Free T3, which would be very low. But doctors just wave this away and say that "it's very rare", leaving the patient with low levels of TSH, Free T4, and Free T3, and (probably) a prescription for anti-depressants.

in reply to humanbean

I guess it really does not matter if the reason is pituitary or hypothalamus failure, as the end result is hypothyroidism making thyroid hormone replacement necessary.

humanbean profile image
humanbean in reply to

That's true for hypothyroidism, however there are quite a lot of other hormones produced by the pituitary and the hypothalamus. Knowing which is faulty could help with identifying deficiencies of many other hormones:

en.wikipedia.org/wiki/Pitui...

en.wikipedia.org/wiki/Hypot...

greygoose profile image
greygoose in reply to humanbean

Knowing which is faulty could help with identifying deficiencies of many other hormones:

I think, actually, it's the other way round. If you test the other hormones, you find out which one is faulty. And, that's what doctors are supposed to do: test other hormones. Pituitary hormones. If they are all low, then it's probably the pituitary at fault. But, if the only low one is the TSH, then it's the hypothalamus at fault. I think I've got that right? Someone correct me if I'm wrong?

I believe it's easier to test pituitary hormones because they are just blood tests. But, testing TRH is more complicated and, I believe, can put the patient at risk in some way. But it is sometimes done. :)

humanbean profile image
humanbean in reply to greygoose

I'm not actually sure which order they do things in, to be honest. I can only remember one person on the forum saying that they had been officially diagnosed with central hypothyroidism after full testing of her pituitary and/or her hypothalamus but it was years ago. And it was probably so long ago I wouldn't have known how the hypothalamus, pituitary and thyroid were related at the time.

There have been others who have mentioned having central hypo, but I don't recall any who went into details of why it was suspected and how it was done.

greygoose profile image
greygoose in reply to humanbean

Well, that's the way I read that it's supposed to be done. But I shouldn't imagine it often is. Doctors seem to prefer to do 50 useless tests rather than one helpful one!

humanbean profile image
humanbean in reply to greygoose

Agreed!

Hedgeree profile image
Hedgeree in reply to humanbean

I'm currently being investigated for possible pituitary issues though none of the medical people I'm seeing have actually used the term central hypo; it seems to be being glossed over?Although I've been using it..

The order of testing that I've experienced so far and requested by the endo has been; a Synacthen test, another test where blood sample is put on ice? (Forgotten the name?) and pituitary hormone tests. These were all done at the same appointment. Then a TRH test later, on a different day.

The other clinic has done a thyroid ultrasound, thyroid tests (though no FT3 yet) calcium tests and an FNA of a nodule.

I'm now having further thyroid tests to include FT3 which they hadn't included previously.

My TSH has always been in range, but my FT4 is currently 9 so below range (12-22) I'm not being prescribed any thyroxine (yet?)

humanbean profile image
humanbean in reply to Hedgeree

another test where blood sample is put on ice?

An ACTH test goes on ice, and it ought to be part of a Short Synacthen Test (SST), but often isn't done.

The SST is done to check for Adrenal Insufficiency :

en.wikipedia.org/wiki/Adren...

Take a look at the "Types" section on the above link.

If ACTH isn't tested during the SST then doctors might miss a diagnosis of Secondary Adrenal Insufficiency.

For info on any testing done by endocrinology departments, you need to keep this link (known as the endocrine bible) for reference :

imperialendo.co.uk/Bible201...

It describes preparation, timing, methods, interpretation of results, for any test an endo is likely to do in a hospital setting.

Info on the SST, for example is on pages 68 - 70.

I hope you get some actual treatment soon. If you are diagnosed with Central Hypothyroidism you will have to be on guard in future that your thyroid hormone dose(s) are never determined by your TSH, but that you always have Free T4 and Free T3 measured to determine your dose(s).

Hedgeree profile image
Hedgeree in reply to humanbean

Yes thanks humanbean that's it! I had a total brain fog moment!

I had both done together SST and the ACTH. They repeated the ACTH a few weeks later though no idea why yet.

Thanks for the link.

in reply to humanbean

True...I wonder how many GPs understand hypo symptoms with low/normal TSH? Many won´t even test FT4 levels so patients with low TSH and low FT4 risk not being diagnosed...

greygoose profile image
greygoose in reply to

GPs don't understand hypo symptoms period!

humanbean profile image
humanbean in reply to

I was one of those. I was first told my thyroid was "borderline underactive" in roughly 1990, but I was told it didn't need to be treated. This was when I used to take what doctors said at face value, and I never followed it up. I also believed at the time that doctors kept accurate medical records. I was astonishingly naive and trusting.

I only started trying really hard to get treatment in about 2010 - 2013, by which time I was suffering from frequent bouts of severe chest pain and it took me at least 20 minutes to go upstairs and I could only do it on my bum, one step at a time. I got my first prescription for Levo 23 years after first being told my thyroid was borderline underactive.

in reply to humanbean

It´s amazing they never followed up on your borderline underactive thyroid during all those years...! Not sure things have got any better in recent years, TBH...

humanbean profile image
humanbean in reply to

I think they may have got worse. The raising of the TSH threshold for diagnosis from top of range up to 10 is a catastrophe for patients, and is so cynically sadistic it still makes my jaw drop.

in reply to humanbean

I remember a TV interview with Dr. Mosley a few years ago, and he said that nowhere is the situation for thyroid patients as disastrous as in the UK...precisely due to the requirement to have a TSH >10 in order to get treatment prescribed...

humanbean profile image
humanbean in reply to

Wow, I didn't know he had a public opinion on the thyroid that was in our favour. I wonder if he has ever mentioned it since.

I was under the impression that TSH needed to be > 10 in Australia and New Zealand, but I could easily have got the wrong end of the stick.

in reply to humanbean

Here is an article about it:bbc.com/news/health-38895877

It was my mother who watched the programme and recorded it when she heard he was going to talk about the thyroid as I had often complained about how poorly thyroid patients are treated and how difficult it is to get a proper diagnosis.

tattybogle profile image
tattybogle in reply to humanbean

Mosley BBC article on thyroid~ seems pretty thorough , and recommends TUK

bbc.co.uk/programmes/articl... how-can-i-tell-if-i-have-a-thyroid-problem-and-what-can-i-do-about-it

Hello Abigail and welcome to the forum :

If you go into Thyroid UK - who are the charity who support this forum you will find everything thyroid - including a list of symptoms for hypothyroidism.

It's a learning curve we all seem to need to go through to get medical help and recognition.

Once with a little knowledge you too will feel more confident at your appointments and better placed with a few facts to hand that can't be dismissed - as we have all been there .

thyroiduk.org

P.S. Just scrolled up the screen and see we now have over 124 thousand members on Thyroid UK - so you're not alone and as this is a patient to patient forum, we all help and learn from each other.

This is a lovely reply thank you so much, I’ll have a good read now and try and educate myself better so I’m in a good position going forward to ask the right questions. :)

Good idea - and ask any questions you like, and read other peoples questions and the replies received.

Even if with the " brain fog " it does sink in and it's a bit like doing a jigsaw without, initially, a picture, but things form, and corner pieces get logged in and your picture evolves.

Sadly it does seem in primary care that appointments, and the relevant thyroid and vitamin and mineral bloods tests are not easily actioned and we do need to do some of the leg work ourselves through private blood companies but once we have the relevant information you can be advised of your next best step back to better health.

I have spent such a long time thinking I was just getting incredibly stupid, or once I even questioned myself if I was getting dementia! The brain fog isn’t even something I was aware of in relation to thyroid, it’s been an education this morning! With the correct help and medication do you find people generally do feel much better? I’ve felt like this for so long that I can’t really imagine being back to normal… I barely recall what normal is now actually. I suppose I don’t want to get my hopes up that I might feel better, but it’s hard not to dream!

Ditto those thoughts - we've all been there - and you will be helped as I was when I found this forum some years ago and why I now jump in and try and give back when I feel I have something to offer someone else.

Abigail holywood, before I received a diagnosis of hypothyroidism I was convinced that I was suffering from dementia. My brain fog was so bad, I couldn't remember words, my speech was slow etc. (My mum had vascular dementia but wasn't hypothyroid) Once I got some levo things improved but my TSH wouldn't conform, always at low end and so my levo was reduced then raised , went up and down according to TSH. Thanks to this site I learned about antibodies and had the test which was positive for TPO. Again thanks to this site I learned to fight my corner with the medics and decided to buy someT3 on the internet. Having fessed up to my GP I was sent to the Endo who agreed I needed T3 and I now get it on NHS, 15mcgm and my thyroid symptoms have mostly gone.

Be aware that your symptoms can come and go, especially if you have antibodies. You can also develop new issues. No wonder most medics think we (mostly women) are bonkers and we should just take a few antidepressants!

in reply to AbigailHolywood

That´s a good idea🙂. Unfortunately, with thyroid disease, you often need to know more than doctors do. With most conditions, I go to the doctor, expecting him or her to know more about it than I do. But, after more than 20 years since my diagnosis, I know that is not the case. You need to know which tests to ask for, and you need to educate yourself about various treatment options in case levothyroxine does not work out optimally for you. Most doctors will not know that, so patients have to be proactive and well-informed. But you seem to have come quite a long way already!

MrsButler profile image
MrsButler in reply to pennyannie

Hi,

Your results are very similar to mine and I also suspect central hypo. Very interested to see what your new GP comes up with.

pennyannie profile image
pennyannie in reply to MrsButler

Hello Mrs Butler - you need to direct your reply to AbigailHolywood - not me :

No worries - as it is her post she will see your reply - so just for reference for another time :

I will definitely report back! I have my bloods on Monday and will hopefully have the results by the end of the week and be able to share more information. Can I ask how you have been feeling with these similar levels? Im absolutely knackered, sore muscles and heavy cycles to name a few!

I am often very tired, cold, serious brain fog and short term memory problems. Acne, irregular periods, constipation, anxiety which I'm now on sertraline for

However, I have very low ferritin and folate so that could also be the cause

SlowDragon profile image
SlowDragonAdministrator

make sure you get vitamin D, folate, B12 iron and ferritin levels tested

Low vitamin levels extremely common when thyroid levels are low

Very low vitamin levels can lower TSH

Important to test thyroid antibodies too for autoimmune thyroid disease

Heavy periods will tend to cause anaemia

Very low iron/ferritin is particularly bad at lowering TSH

Always test thyroid levels early morning, ideally before 9am to get highest TSH (which is all majority of medics look at)

I’ve been browsing the forum and saw your name pop up several times with such useful info, I was hoping you would chime in and here you are! Thanks so much! Great advice, I’m actually going to call the doctors at 11 and double check which bloods they have me booked in for on Monday. Hopefully it’s all the ones listed above, if not.. would it be worth asking today for them to be added on or shall I let the Dr do her thing first and just see what the initial results say?

SlowDragon profile image
SlowDragonAdministrator in reply to AbigailHolywood

Suggest you ask what’s being tested

Are you currently taking any vitamin supplements or medications

I’m taking Agnus castus because I was told it helps with reducing menstrual bleeding as mine gets very heavy. Other than that, I take a B vitamin complex, 1000ug Vitamin D and high dose vitamin C :)

SlowDragon profile image
SlowDragonAdministrator in reply to AbigailHolywood

So you need to stop vitamin B complex ideally a week before blood test as contains biotin and biotin can falsely affect test results

Is blood test early morning?

If they are testing iron it should be fasting test

I had no idea about the biotin, I’ll stop that immediately. Test is at 9:50am, I wouldn’t have eaten by then, will this suffice?

SlowDragon profile image
SlowDragonAdministrator in reply to AbigailHolywood

Yes ….should be fine

Biotin is used in lots of lab equipment, that’s why we need to stop taking supplements 5-7 days before test

SlowDragon profile image
SlowDragonAdministrator in reply to AbigailHolywood

nhs.uk/common-health-questi...

As you have very heavy periods you would hope NHS are testing iron and ferritin….

In which case it should be fasting test

Oh before I forget… would feeling lightheaded and “a bit woozy” be something associated with hypothyroid?

"feeling lightheaded and “a bit woozy” Yes, this symptom was the thing that made me see my GP. When I very nearly keeled over one day I realised that I had been losing consciousness for nano-seconds here and there. At dx my results were:-

TSH 8.6 (.35 - 5.5) & FT4 11 (10 - 21)

Good Luck with your GP, and hoping that you find the answers/treatment. 😊

Thank you so much to everyone who has replied, this is such a helpful and welcoming forum! I will keep everyone updated as I get results in and see the GP. I’ll also be sure to keep active on the forum and thyroid uk to educate myself on what’s happening x

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