Test results for underactive thyroid

[Vallmo47]

Morning,

Could anyone explain to me what a test result of 3.66 means in a person suffering from an underactive thyroid? I’m currently on 100mg of Levothyroxine and was simply told my results are “normal” for someone with the condition. I’d like to understand my results a bit better but the receptionist couldn’t tell me what it means.
Thank you!

If you are medicated your result should be lower than 3.66.

I hace UAT and my bloods are around 1 - 1.5. You should check the NICE guidelines and ask gp to increase your meds.

@Can2022getanyworse Thank you. Maybe I need to make a telephone consultation to speak with a GP in that case. I was fobbed off with “your results are 3.66 which is normal range so nothing else necessary”. I asked if this is a combined number or what the normal range is, they couldn’t tell me.

Normal is 0.2 to 4 so you're still on the high side. If you are on medication you should be much lower.

Iirc the nice guidelines do have an optimal assuming medicated correctly level, and also they should be treating the symptoms not just the blood results.

Go back to the gp.

That's your TSH level, and at 3.66 it's too high, should be closer to 1.0. However you won't get any GP to say it's anything other than normal as it falls within the reference interval.

What really matters is how you feel - do you have any hypothyroid symptoms? If so, then you likely need an increase in your Levo dose.

Thank you both! Yes I have been noticing some symptoms that I had before being diagnosed so I will phone up for a telephone consultation to discuss in more detail. Thank you for explaining the levels to me!

Please be firm and don't let yourself be fobbed off! Happens all too often.

I am also taking 100mg Levothyroxine and my recent blood test tsh level was 3.83, but 'normal' apparently. I was sent for the blood test because I complained of lack of energy and drive but they still don't seem to want to address it.

OP, when are you taking the Levothyroxine? I recently found out that I'd been taking it at the wrong time, ie too close to eating or drinking coffee. I now set an alarm 1/2 hour before I get up and take it then and go back to sleep. The GP never mentioned that it matters when you take it.

What matters with Levothyroxine is that you take it on an empty stomach, leave an hour before eating. Also keep it well away from calcium supplements or calcium-rich foods (4 hrs at least) and an even bigger gap if you take iron (12 hrs).

@CosyCoffee It does say on the packaging to take 30 minutes before eating so I do follow that- on weekends/school holidays I’m able to leave it for a full hour, but I don’t always have the time. Maybe I need to set an alarm and try to go back to sleep for a bit like you suggested though. I will try to do that from now on, sometimes I struggle getting back to sleep though but that’s another matter.

Thank you @CrunchyCarrot , I will try to not let them fob me off. I did mention I’m sleeping more and getting quite low in mood, plus slight weight gain despite exercising vigorously 6 times a week. They said those things are unlikely to be connected because my levels are “normal”. I don’t know what else I can say to make them listen.

Oh gawd. I have Greek yogurt for breakfast! Maybe I should start taking it when I get up for my 3am pee instead then - I don't eat after 7pm so hopefully would have an empty stomach by then?

Thank you @CrunchyCarrot for your advice, and sorry for hijacking op.

Oh my goodness, I didn’t know to avoid calcium either. Really thankful for all of the advice, sounds like we are both changing our habits @CosyCoffee. I’m baffled this advice isn’t explained in detail when you get prescribed the medication. My dad in Sweden with the same condition has never even been told to take it on an empty stomach so he has it WITH his breakfast- yoghurt, eggs and coffee. Rinse and repeat. I have told him and will tell him again. Thank you @CrunchyCarrot, maybe these small changes will improve my levels.

Yes fingers crossed we see some improvement with these tweaks @Vallmo47 x

The range my NHS app says is 0.3-5.0, isn’t that the range GPs are working to, hence they will just say 3.66 is normal?

Is that different to the NICE guidelines?

Mine is 4.76 with medication. I have other health issues so it is hard to isolate which symptoms are due to thyroid.

I take it at night if that helps? Just before bed

If you can afford it, it might be worth getting a private check with Medichecks. They have an offer on Thursdays. They will do all levels, TSH antibodies etc.
It's very easy to do and gives you lots more information

Thank you everyone! Really appreciate it. @Chewbecca I haven’t been told any range whatsoever, just that my numbers are “normal” and beyond that they’ve kept it to themselves. I find it frustrating to be honest - I’d like to understand MY levels. @Rebel2 I will likely start doing this too, but I do enjoy a caffeinated drink before bed (cola drinker) so can’t be too close together. I always need toilet in the middle of the night though so will start taking it then instead. @hesaidshesaidtheysaid this is also very good advice. Thank you all!

Do you have the NHS app? That’s where I found my results + ranges.

Usually only TSH is tested (this is a pituitary hormone), if it falls in the normal range then the other two parameters, free T4 (FT4 - thyroxine, the inactive 'storage' form of thyroid hormone) and free T3 (FT3 - the active thyroid hormone) won't be measured. You really need to know those two as well for a fuller result (for example, how well does your body convert FT4 into FT3). Also as Chewbacca says, antibodies would be good to know in case you have autoimmune thyroiditis, which adds another level of complication onto things.

I use Medichecks for a full thyroid panel because I want to get a full picture of what's going on.

@Chewbecca Yes I have the NHS app but can’t read my medical history on there nor are the results published. I’ve asked them about this a few times and been told “they are no longer offering this service”. It’s stupid because I’m trying to free up their phone lines, but they insist I must phone up for results. Thank you again both of you. @CrunchyCarrot I clearly have a lot to learn about this condition. When I have my telephone consultation I will ask about the other levels.

Hi OP I was diagnosed in September and it’s been a steep (still is) learning curve.
one thing I’ve learned is that you really have to be your own advocate- the GPs often just get you to normal range, however you have to push them to treat you as an individual.
Also go by your symptoms and what was normal for you, some people are able to take meds and be absolutely fine, whilst others not so.
I too like @CrunchyCarrot use medichecks as my gp refuses to test my t3 & t4, it’s really worth knowing, especially if you’re having symptoms. In a nutshell - educating yourself is essential (but really hard when you have no energy) so that you can be your own advocate.
There are podcasts, books etc that I’ve started to read & listen to that have been essential to my learning. Happy to recommend.

You may find this helpful, it's absolutely brilliant.

podcasts.apple.com/gb/podcast/the-doctors-kitchen-podcast/id1316938642?i=1000604232102

Thyroid and adrenal specialist Dr Amy Gajjar

@Blanketunderstars Oh yes please, I love reading. I also have slightly raised blood pressure and am borderline for diabetes type 2 so I should read up on it all, really. I have both hypertension and diabetes running in family but the doctors just don’t take me seriously, writing it off as health anxiety. My mum died (aged 60) from diabetes related disease so I feel I have good reason to be concerned, but like other posters have said … they really don’t care if you fall within their normal range. It was really frustrating when I saw the nurse on Monday because she told me to exercise more to lower my blood pressure. On average I complete 5.5 hour a week rigorous lane swimming and I walk and cycle everywhere I go. I explained this to her and was told “then it’s your diet”. I nodded and said yes my diet was poor in past but if you look at my record you will notice I’ve lost 4 stone in the last 2 years. She then said “well if it’s neither your exercise levels or your diet, it’s because blood pressure goes up when you visit GP”. Okay, not the fact that hypertension runs in family?

Sorry for rambling on, but my level of trust in them is decreasing and I just don’t feel listened to. :/ I will try to save up and get myself checked over privately I think. Thank you so much.

@CheeseDreamsTonight I am going to listen to this today, thank you!!

You will need a GP appointment to get your meds increased, as your results are 'normal within range' but you still have symptoms.

Ask for a trial of, for example, 125 one day and 100 the next, to see if it helps.

Did you check your vitamin levels and take good supplements? I need regular high dose vitamin d and b complex to feel well

@Vallmo47 - raised blood sugar levels are part of hypothyroidism. Once your hypothyroidism is corrected then they should reduce. Ditto for cholesterol. It's also probably a good idea to look into reducing carbs in your diet if you have diabetes in the family.

Doctors may certainly try to put symptoms down to 'anxiety' or even 'depression'. Don't be hoodwinked by this, it's insulting really! I'm afraid the responses your GP gave you are pretty standard and not remotely helpful. One visits a doctor hoping they will know how to help, but in the case of many chronic diseases then this just doesn't apply, sadly.

HealthUnlocked is a good forum for thyroid issues, although I don't agree with some of what's written there re 'having' to be gluten-free or even dairy-free. Be aware, hypothyroidism is a very deep rabbit hole and even after 7 years post-diagnosis I am still learning more and more. Hypothyroidism affects every one of your body's systems.

If you are feeling in the mood to get more blood tests then an iron panel is useful (hypo patients are invariably iron-deficient), Vit D3, Vit B12 and folate. But do start with a full thyroid panel, and let us know how you get on!

@Vallmo47 she talks about exactly what you are going through - being dismissed as normal range etc. I think she has books too so should be very helpful