Overmedicated but low temperature readings? - Thyroid UK

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Overmedicated but low temperature readings?

Jojozo profile image
21 Replies

Morning everyone!

I've attached my last blood test results from March again. I have Hashimoto's and my doctor is still insisting I'm overmedicated (due to my low TSH level, which has been that low, or lower, for about nine years) but I don't feel good and my temperate is anything from 35.2 to 35.6 each morning. I am feeling cold even in this weather at times, but the next minute I'll get a hot shivery feeling, as if my body can't regulate my temperature properly.

Could this indicate my thyroid isn't working as it should? Or could it be an issue with my adrenals? Low adrenal function has been an issue in the past but I tested negative for Addison's.

My high B12 levels have been a mystery for some years and my GP isn't concerned about them.

I am gluten and dairy-free.

I have a full hysterectomy last year and I recently stopped my oestrogen HRT due to terrible acne breakouts, mood swings and weight gain (although the temperature issue pre-dates that). Sadly, I wasn't feeling any benefits of being on HRT so I thought it was worth stopping it for a while to see if that helped.

Thanks in advance for any help!

NHS results from March but my dose has been lowered since then:

Serum free T4 level 14.8 pmol/L [11.1 - 22.0]

Serum free triiodothyronine level 4.0 pmol/L [3.1 - 6.8]

Serum TSH level 0.10 mu/L [0.27 - 4.2]

Autoimmunity results done privately last May:

THYROGLOBULIN ANTIBODIES - 12.7IU/mL (0 - 115)

THYROID PEROXIDASE ANTIBODIES12 134IU/mL (0 - 34)

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Jojozo
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21 Replies
pennyannie profile image
pennyannie

Hello Jojoko :

These results are from March 2021 and i can't see any thyroid results -

Do you have a current TSH, T3, T4 and antibodies, inflammation and antibody results and ranges there ?

Jojozo profile image
Jojozo in reply topennyannie

Sorry, I thought I'd put them on there. I also have terrible brain fog 😅 I'll add now.

SeasideSusie profile image
SeasideSusieRemembering in reply toJojozo

Jojozo

NHS results from March but my dose has been lowered since then:

Serum free T4 level 14.8 pmol/L [11.1 - 22.0]

Serum free triiodothyronine level 4.0 pmol/L [3.1 - 6.8]

Serum TSH level 0.10 mu/L [0.27 - 4.2]

I responded to your previous post when you posted these results here:

healthunlocked.com/thyroidu...

Everything I said there still stands.

Did you not stand your ground based on the evidence I gave your from Dr Toft? You don't have to accept your doctor's suggestion that you lower your dose. The doctor/patient relationship is a two way thing, they can suggest but not dictate. You could have refused the reduction in dose based on the evidence I gave you plus taking any symptoms into account:

but I don't feel good and my temperate is anything from 35.2 to 35.6 each morning. I am feeling cold even in this weather at times, but the next minute I'll get a hot shivery feeling, as if my body can't regulate my temperature properly.

There you go, symptoms of hypothyroidism.

Could this indicate my thyroid isn't working as it should?

No, we know your thyroid doesn't work as it should because you have a diagnosis of Hash's/hypothyroidism and are on Levo. So it's a matter of are you on the optimal dose of Levothyroxine to alleviate your symptoms, and clearly you're not.

But as you had a dose reduction in March you should have been retested 6-8 weeks later, that is normal protocol. Ask for a new test and I expect your FT4 and FT3 are even lower now and there you will see the reason why you feel as you do.

Unfortunately, due to many doctors' ignorance of treating hypothyroidism and not knowing how to interpret test results, we have to be our own advocate and argue our case by presenting evidence and being strong. Don't be afraid of saying no you wont reduce your Levo based on TSH alone, there is plenty of evidence that a low TSH is not a danger, doesn't cause osteoporosis and atrial fibrilation (if that's what your doctor says). It's your body, your health, and unless you want to stay miserably unwell then you need to put up a fight. Sorry to be blunt, but that's how it is.

Jojozo profile image
Jojozo in reply toSeasideSusie

Thanks Seaside Susie. I did try and stand my ground with my GP but she was adamant that I lower the dose for safety reasons. But I have currently have chronic gut issues and fatigue and I'm finding it hard to function normally. I can't afford to go privately again at the moment but I may get a comprehensive private test done. My GP is retesting this week but it will only be the basic NHS tests again.

SeasideSusie profile image
SeasideSusieRemembering in reply toJojozo

Jojozo

I did try and stand my ground with my GP but she was adamant that I lower the dose for safety reasons.

What safety reasons?

Ask for scientific studies that back up what she's saying.

If she says osteoporosis and atrial fibrilation there is evidence to be found about articles that dispel this on the forum.

Jojozo profile image
Jojozo in reply toSeasideSusie

Thank you. She didn't specify she just said my TSH is too low, which indicates I've overmedicated. I've had the same whenever the NHS endos have taken me off T3 (which I am currently not taking). I am going to ask to try a different form of Thyroxine, if there is one available on the NHS, and see if that helps. I've been on Levothyroxine for 28 years and I've never felt great on it, but that could also be the dose.

SlowDragon profile image
SlowDragonAdministrator in reply toJojozo

Request trial of liquid levothyroxine and it’s normal to split dose of liquid levothyroxine into 2 smaller doses…..waking and mid afternoon (or bedtime if more convenient)

Gut issues are extremely common HYPOTHYROID symptom…..hardly surprising with such low Ft3

Have you had coeliac blood test done

Are you on strictly gluten free diet

Jojozo profile image
Jojozo in reply toSlowDragon

Yes, I’m strictly gluten free. I had a coeliac test and I was fine, but I am still gluten free because of your previous advice! Thank you for letting me know about the gut connection and then B vitamins, that’s really helpful.

SlowDragon profile image
SlowDragonAdministrator in reply toJojozo

TSH is irrelevant on replacement thyroid hormones

Especially if previously been on T3 and TSH suppressed…..it’s common for TSH to remain suppressed indefinitely if been low for significant period of time

Jojozo profile image
Jojozo in reply toSlowDragon

Thank you. It became suppressed when a doctor/functional nutritionist put me on T3 around nine years ago because he said my T3 levels were ‘disastrous’. Obviously I won’t use his name but he’s since been struck off, which is a bit worrying!

JaneChapple profile image
JaneChapple in reply toJojozo

Very sad because that dr was right.🤪🤓❤

Jojozo profile image
Jojozo in reply toJaneChapple

It is sad. He was eye-wateringly expensive (desperate times and all that) but seemed to know his stuff so I'm not sure what happened. My TSH used to be high - is it better for it to be so low? It was 0.01 for years and years.

shaws profile image
shawsAdministrator in reply toJojozo

One of my GPs was insistant that T3 converted to T4. My response to him was "I'm sorry doctor that's wrong';. He hung up his phone.

Jojozo profile image
Jojozo in reply toshaws

Ha! That's brilliant.

Jojozo profile image
Jojozo in reply toJojozo

How very helpful of him.

Californiamaybe profile image
Californiamaybe in reply toSeasideSusie

I have given up on doctors in USA are not treating just throwing out whatever that doesn’t help and standing ground to not treat. I decided to try Ashwaganda from a natural medicine / previous nurse who understands chemicals don’t work. I gave up on all. I understand you have to be off thyroid for a few weeks prior to starting so I actually have been off 3. I started feeling worse when 1.5 weeks in and now a bit normal so excited to get started. I’ll keep you up to date but she herself did this and stated she has never had thyroid issues again so excited to see if for me it works.

Jojozo profile image
Jojozo in reply toCaliforniamaybe

Good luck and please let us know how you get on!

SlowDragon profile image
SlowDragonAdministrator

So you are not taking any B12 supplements, or multivitamins that could explain high B12 levels?

Paradoxical B12 deficiency

b12oils.com/paradoxical.htm...

Suggest you consider trying a daily vitamin B complex…..we need good levels of ALL B vitamins…..you may see B12 levels reduce (and symptoms improve)

NHS results from March but my dose has been lowered since then:

Serum free T4 level 14.8 pmol/L [11.1 - 22.0]

Serum free triiodothyronine level 4.0 pmol/L [3.1 - 6.8]

FT4: 14.8 pmol/l (Range 11.1 - 22)

Ft4 only 33.94% through range

FT3: 4 pmol/l (Range 3.1 - 6.8)

Ft3 even lower 24.32%

Most people when adequately treated will have Ft3 at least 50-60% through range…..and Ft4 is often a little higher

These results suggest you were under medicated and in need of dose INCREASE

Jojozo profile image
Jojozo

Thank you so much. I know I sometimes go over old ground on here but it's because I have spent so many years going round and round in circles, spending a fortune on various experts, and sometimes feel as if not much is changing. It's nice to reach out on this brilliant forum and get some help and support when on the days it all feels a bit much 😊

Jojozo profile image
Jojozo in reply toJojozo

p.s. I'm not taking any B12 but that link you sent me makes a lot of sense. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toJojozo

I ALWAYS had over range B12 (and numerous symptoms of low B12) …..until I started on daily vitamin B complex

Many hypothyroid patients have low B1 (thiamine)

We need all B vitamins present in order to use them all

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