Bloods are supposedly fine, but I suspect hypot... - Thyroid UK

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Bloods are supposedly fine, but I suspect hypothyroidism

CatACat1 profile image
7 Replies

Hello,

Wondering if anyone on here can offer me any advice. I have suspected that I have hypothyroidism for about a year now - very tired, sensitivity to cold, depressed, very slow metabolism (resting heart rate of 50, struggle to not gain weight with restricted diet and exercise every day).

Last summer I got bloods done but doctor said they were fine. I have subsequently had two other thyroid function tests. The latest one was with endocrinologist who also ruled out Hashimotos. He said that I didn’t have an underactive thyroid as bloods were within range.

Anyway, to cut a long story short, I got frustrated and I decided to try levothyroxine to see if that helped to make my symptoms any better. Started on 25 mcg about a month ago. Felt great for about three weeks and then last week I started to feel very sluggish again. My resting heart rate is low already at 50bpm, but decreased to 47bpm, other symptoms reappeared (feeling constipated, low mood).

I’ve therefore just increased my dose to 50 mcg per day, for the last two days, does this sound ok? I read that a low dose can actually make you feel worse by not topping up your thyroid, but replacing it, and that someone of my body weight (60 kg) should probably be on a higher dose. Feeling good on 50 mcg, although it’s early days.

What I’m wondering is, is was I ever actually hypothyroid? Or have I just being silly and messed around with my thyroid by taking levothyroxine. Feeling a bit confused and my doctor has said that I shouldn’t have self medicated, that I shouldn’t be getting blood tests on NHS. Financially it’s fine - I have booked a medichecks blood test for next week, just to see where the levels are at, although I realise you need to wait 6-8 weeks for the medication to really balance out in your system. Just feeling a bit lost in terms of where to go next. Should I persevere for the next year with Levothyroxine to see how I do, or should I stop taking and let my thyroid just do its own thing?! Results below:

July 2022 (GP , not early morning)

TSH 1.71. ( 0.3 -3.9)

Free T3 3.7 (3.7-6.7)

No T4 - they messed up

April 2023. (GP, not early morning)

TSH 1.96. (0.35-4.94)

Free T3 3.0 (2.4 - 6.0)

Free T4 9.7 (9.0 - 19.10)

May 2023 (endocrinologist, early morning)

TSH 2.5 (0.6-4.8)

Free T3 5.0 (3.5-6.5)

Free T4 12.6 (11.5 -22.7)

Thanks!

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SlowDragon profile image
SlowDragonAdministrator

Pretty likely …..but you needed thyroid antibodies and vitamin levels tested too

You need to get FULL thyroid and vitamin testing 6-8 weeks after starting on 50mcg levothyroxine

 I have booked a medichecks blood test for next week, just to see where the levels are at, although I realise you need to wait 6-8 weeks for the medication to really balance out in your system

Have you included thyroid antibodies and vitamins in test ordered

Is it this one?

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Waste of time and money testing TSH, Ft4 and Ft3 until at least 6-8 weeks after any dose or brand change in levothyroxine …..but obviously useful to test vitamin levels and antibodies now

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

Medichecks also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee 

Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Only do private testing early Monday or Tuesday morning. 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested after any dose change

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease 

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Be aware that as you get nearer 6-8 weeks on 50mcg levothyroxine it’s common to start seeing return of hypothyroid symptoms as your body gets ready for next dose increase in levothyroxine

what vitamin supplements are you currently taking….if any?

Important to stop any supplements that contain biotin 5-7 days before test

CatACat1 profile image
CatACat1 in reply toSlowDragon

Thank you so much for your reply. This is really helpful and will bear all this in mind going forward. The test I’m getting next week with medichecks is the one you refer to - so at least as you say, if it’s not helpful for thyroid levels yet, it will be good in terms of vitamins etc.

I’m just taking a multivitamin currently, but often forget to take as I have been careful not to take it too close to the Levothyroxine in the mornings. I think I saw one of your previous posts about vitamins. Will look into getting some proper supplements. Thank you again!

SlowDragon profile image
SlowDragonAdministrator in reply toCatACat1

Stop multivitamins now

Multivitamins Never recommended on here anyway

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

See what vitamin levels are in test

Then get good quality individual supplements as required depending on results

greygoose profile image
greygoose

Hi CatACat1, welcome to the forum. :)

First thing I have to say is that doctors know next to nothing about thyroid. So, take anything they say with a laaaaaarge pinch of salt. They only tend to look at the TSH, and they don't even unstand what it is or how it works. Unless you have your blood draw your TSH won't be at its highest, but they think it doesn't matter what time you have it. But it could make the difference between a diagnosis or no diagnosis.

Secondly, they think that one blood test can definitively rule out Hashi's - Autoimmune Thyroiditis. It can't. Antibodies fluctuate all the time, so you might get a negative reading one week, and a positive one three weeks later. Also, some Hashi's people never even have positive antibodies, but they still have Hashi's.

Looking at your results, your FT4/3 are very much on the low side, so I'm not surprised you had symptoms. Unfortunately, your TSH doesn't reflect that, so that's why doctors are saying you don't have a problem. Even with your early morning test your TSH wasn't over-range. However, that doesn't make it 'normal'. A truly 'normal' - euthyroid - TSH would be around 1. A TSH over 2 means that your thyroid is struggling. But, doctors don't know that, they go by the range.

When this happens, the TSH not reflecting the Free levels, it's usually a pituitary or a hypothalamus problem, rather than a thyroid problem. The problem the thyroid has is that it's not getting enough TSH to stimulate it to make adequant quantities of thyroid hormone. It's what we call Central Hypo. But, very few doctors have even ever heard of CH, let alone know how to recognise it.

So, I don't blame you for starting to self-medicate. And, don't worry, you're not 'messing around' with your thyroid, the levo won't do it any harm. But, the problem with doing that is that you are highly unlikely to get any sort of diagnosis. And, that can have draw-backs where future medical care is concerned.

On, the other hand, stopping the levo would mean going back to suffering increasing symptoms. If the TSH doesn't rise - and if you have Central Hypo it won't - then thyroid hormone levels will gradually drop until they get so low that even the dumbest doctor will have to take action. But, there's no knowing how long that would take, and in the meantime, living with low thyroid hormone levels can have all sorts of consequences on the other organs of the body. Every single cell in your body needs thyroid hormone to function. So, you're very much between a rock and a hard place, I'm afraid. Unless, out of the blue, you come across an understanding, knowledgeable doctor. And, personally, I don't know one of those!

But, whatever you do, there's no point in testing too soon. That will not help you decide what to do next. The results will be unreliable. You need to wait at least six weeks for things to settle.

CatACat1 profile image
CatACat1 in reply togreygoose

Thank you for taking the time to reply. This is really helpful and reassuring. My GP made me feel like a naughty school girl when I last spoke to him!

I think I am going to persevere with the levothyroxine for the next year, and see if I can find a sympathetic endocrinologist once I’ve had a few more blood tests. Really can’t face just ‘making do’ with the pre- Levothyroxine me. Thank you - not feeling quite as lost as I was a few hours ago!

greygoose profile image
greygoose in reply toCatACat1

You're very welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply toCatACat1

My GP made me feel like a naughty school girl when I last spoke to him!

A) GP would be expected to advise against taking a prescription only medication without prescription

B) if you could get diagnosed as hypothyroid via NHS ALL further prescriptions would be free

So in an ideal world you would have tested thyroid antibodies and vitamin levels BEFORE starting on levothyroxine

Low vitamin levels tend to lower TSH

But possibly looking at central hypothyroidism anyway

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

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