Thyroid or something else?: Hi All, I’ve been... - Thyroid UK

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Thyroid or something else?

Flossiewestie2020 profile image

Hi All,

I’ve been diagnosed with Hypothyroidism/Hashimoto’s for almost two years now.

My TSH and T4 are optimal but my T3 is low in range.

Recently I’ve noticed that I’ve been having a range of symptoms that I would associate with hormones: insomnia, spotting between periods, tender breasts, migraines and really intense anger/irritability. I’m 37.

These are all new symptoms for me - I’ve not experienced them before.

I was wondering if this is likely to be caused by my thyroid condition or whether it’s more likely to be something else. My thyroid labs haven’t really changed much since diagnosis.

I’ve arranged an appointment with the doctor but I literally have no faith in them!

Thanks in advance.

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Flossiewestie2020 profile image
Flossiewestie2020
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40 Replies
Lotika profile image
Lotika

When you say “low in range” do you have a percentage or the number + range? If so, maybe wiser minds will help you formulate an argument. I would say that some of those would definitely be the same as the low fT3 symptoms I had… issues with emotional regulation is one for me and people do have period issues. Mine went the other way, which is unusual.

T3 does help regulate female hormones in my personal experience, and those do look like female hormone issues which could be connected with low fT3… but as you rightly identify, convincing the quack is a whole different issue… I feel like I should make us some T-shirts ;)

Flossiewestie2020 profile image
Flossiewestie2020 in reply to Lotika

Ha, yes! Thanks for your message. My T3 is 24% through the range. My T3 has always been low and these symptoms seem new 🤷‍♀️ I’ve purchased some NDT but I’m feeling a bit nervous about starting and wanted to rule out any other issues!

Lotika profile image
Lotika in reply to Flossiewestie2020

Yup, sounds low if your fT4 is anything approaching 70% or similar… personally I would try a tiny smidgen of T3 with levo first before moving to NDT… or that is my strategy! I haven’t checked out your profile, but if I could go backwards in my own journey, I would have tried having really hot fT4 on levo only - like close to 100% through range - and seeing what that did to fat3 before going down the combo route, simply because it is so much easier!

Flossiewestie2020 profile image
Flossiewestie2020 in reply to Lotika

My T4 was at around 100% or more when I was on 125mcg of Levo; it’s not more like 50% on 100mcg. I do feel better on this dose and my T3 is usually low in range even when my T4 is super-high (although occasionally it’s been higher) 🤷‍♀️

Lotika profile image
Lotika in reply to Flossiewestie2020

Well - definitely a contender for T3 in my inexpert view, then… bonkers low for that level of fT4…

Flossiewestie2020 profile image
Flossiewestie2020 in reply to Lotika

Yes, although I actually feel ok fatigue and brain fog-wise, which were my worst symptoms 🤷‍♀️

FancyPants54 profile image
FancyPants54 in reply to Lotika

I did that. Over top of range (just) FT4 lowered my already low in range FT3!

Jacqui1958 profile image
Jacqui1958 in reply to Flossiewestie2020

May I ask where you got your NDT please. Am on T3 but have read better things about NDT. Thank you.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to Jacqui1958

I’ll message you x

DippyDame profile image
DippyDame

I'm not a medic so cannot diagnose but in your shoes and with your symptoms I'd be thinking "undermedication".

To evaluate thyroid function thoroughly you need a full thyroid test to include TSH, FT4, FT3, vit D, vit B12, folate , ferritin and antibodies.

Doubt your GP will oblige with all which is why many of us have private tests

thyroiduk.org/help-and-supp...

thyroiduk.org/if-you-are-hy...

SlowDragon profile image
SlowDragonAdministrator

As you are coeliac and have Hashimoto’s you will almost certainly need T3 prescribed alongside levothyroxine

Are you based in U.K.

If so recommended to see thyroid specialist endocrinologist who will prescribe T3

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Flossiewestie2020 profile image
Flossiewestie2020 in reply to SlowDragon

Thanks for this. I thought optimal T4 was mid-range for some reason 🤷‍♀️ sometimes my T3 is higher when my T4 is above range but sometimes not. Don’t know why it fluctuates!

SlowDragon profile image
SlowDragonAdministrator in reply to Flossiewestie2020

Essential to maintain OPTIMAL vitamin levels

What vitamin supplements are you currently taking

With gluten intolerance low vitamin levels extremely common

Poor conversion of Ft4 to FT3 common with Hashimotos and especially if coeliac/gluten intolerance

Likely to need T3 prescribed alongside Levothyroxine

Typically 5mcg as 3 doses spread through the day at roughly 8 hour intervals

Flossiewestie2020 profile image
Flossiewestie2020 in reply to SlowDragon

I take iron, magnesium, zinc, selenium, omega 3, vit C, vit D, b-complex…think that’s it 😂

SlowDragon profile image
SlowDragonAdministrator in reply to Flossiewestie2020

Important that iron, magnesium, vitamin D are minimal 4 hours away from levothyroxine

And stop B complex a week before all blood tests

Flossiewestie2020 profile image
Flossiewestie2020 in reply to SlowDragon

Yep, all over it!

jrbarnes profile image
jrbarnes

I'm the same. Even with T4 at 100% my T3 is at the bottom of the reference range. Over range T4 and I still have symptoms with a 1.3 TSH. When I was 36(now 41) my T4 levels dropped significantly and raising my Levo doesn't seem to be making me okay again so I'm using T4/T3 combo. I had each one of those symptoms you listed and they were horrible but I didn't know what was wrong so I lived with them for 4 years. I was so irritable that I complained about everything, had road rage, tensed face and muscles, wanted to punch and rip things up and a short fuse. The insomnia made it worse. My boyfriend at the time would make me angry just by scraping the bottom of a yogurt cup ha! Adding in some T3 really did help the mood issues, migraines, and breast tenderness. The insomnia is still a work in progress. What was your TSH when your T4 is 100%?

Flossiewestie2020 profile image
Flossiewestie2020 in reply to jrbarnes

Umm it’s been as low as 0.1 - that was when my T4 was above range. I did find that at a high dose I seemed to have more ‘flares’ and felt quite wired - much more up and down.

jrbarnes profile image
jrbarnes in reply to Flossiewestie2020

So it sounds like pushing your T4 higher isn't the answer. I don't agree that your symptoms are perimeno but low T3 related. At your age I had the same exact symptoms and thought it was possible peri as well and went to a reproductive endo who tested all my sex hormones, FSH, AMH, and they even did an antral follicle count during my cycle with an ultrasound. The endo stated that I was definitely NOT going through peri or meno. Low T3 can mess with your cortisol(insomnia) and cortisol can mess with progesterone and low progesterone can cause estrogen dominance. All from low thyroid hormone. By taking T3 with my Levo I no longer have breast tenderness, migraines, and anger. It takes a little bit of time to find the right combo of Levo and T3. You can also take NDT with some Levo.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to jrbarnes

Thanks. I have NDT to take - is it better to take it on its own or with Levo?

jrbarnes profile image
jrbarnes in reply to Flossiewestie2020

It depends on what you need. For me NDT had more T3 in it than I needed so when I got up to 2 grains I was sweating and feeling lightheaded but when I went down in dose it wasn't enough T4 and I had facial swelling and carpal tunnel in my wrists. I'm one on those people that needs a higher amount of T4 or I'm not going to feel stable. Some people can do okay with a lower amount of T4 and more T3. Some people will feel fine on NDT by itself. My nurse practitioner says she has people successfully using Levo and NDT together.

SlowDragon profile image
SlowDragonAdministrator in reply to Flossiewestie2020

Often pushing Ft4 too high is not the answer

But adding small doses T3 instead

Flossiewestie2020 profile image
Flossiewestie2020 in reply to SlowDragon

Would you suggest T3 on its own rather than NDT?

SlowDragon profile image
SlowDragonAdministrator in reply to Flossiewestie2020

Levothyroxine plus small doses of T3

Usually 5mcg T3 2 or 3 times a day…..but starting SLOWLY with just 5mcg

A) far more likely to get prescribed combination on nhs (eventually)

B) many people find NDT has too much T3 in relation to T3 and continuity of supply is always an issue

BobbieAnton profile image
BobbieAnton

Peri menopause ?

Flossiewestie2020 profile image
Flossiewestie2020 in reply to BobbieAnton

Maybe! When I mentioned that to my GP she laughed I’m my face 🙄

FancyPants54 profile image
FancyPants54 in reply to Flossiewestie2020

Bloody useless! A woman too. She'll learn - hopefully the hard way.

Your symptoms are bang on perimenopause which can start 10 years ahead of menopause. I'd put my money on it being your sex hormones that are starting to mess about and that's dragging thyroid with it. We need to treat both together.

I send everyone to the wonderful web site menopausedoctor.co.uk. It's right up to date with treatment and information. It's all NHS based treatment using NICE guidelines for doctors. Everything recommended is body identical, ie the same hormones we are loosing. I might not be here now without the woman behind that clinic.

There is so much information on that web site. Written, blog, pod casts and videos. I would recommend setting aside a week or 2 to go through everything relevant and learn all you can. Then book an appointment with a different GP and ask for the blood tests (needed before the age of 45, not after).

NIKEGIRL profile image
NIKEGIRL

How rude for a professional to scoff at a very real consideration. I’m quite angry at that. Not with you. Dr can’t solve the issue but if u mention an option she laughs. That’s just rude.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to NIKEGIRL

Yes, having Hashimoto’s has made me hate doctors so much 😂

NIKEGIRL profile image
NIKEGIRL in reply to Flossiewestie2020

I hated drs before my Graves diagnosis. My only saving grace is I moved drs. He is great. He actually looks at you when u go and see him and listens. Heaven forbid. Sadly he is going away for 6 months as his fiancée is taking a placement at another hospital. I have no desire to see an endocrinologist at our local hospital. I feel that being scoffed at is not acceptable in any form. It’s a real person, you, in front of them and Hashis isn’t a laughing matter.

FancyPants54 profile image
FancyPants54 in reply to NIKEGIRL

This happens all the time. I'm part of a closed group supporting menopausal women. Your hair would curl at the stories there. The way women have been treated by their GPs. Diabolical. And the myths and downright dangerous misconceptions that there are out there about HRT in the medical world. They are operating on information from the dark ages!

Flossiewestie2020 profile image
Flossiewestie2020 in reply to FancyPants54

My endocrinologist actually told me that there’s just not enough research into conditions that affect women 🙄

FancyPants54 profile image
FancyPants54 in reply to Flossiewestie2020

There really isn't. And all medication dosages are tested on men! Women's fluctuating hormones are deemed to make us unsuitable to test against. So we have to take a man's dose of medication and hope for the best. It's ludicrous.

Fortunately these new menopause specialist doctors who are coming to the fore at the moment are determined and making waves, conducting their own research etc. So things might get a chance to change in that field soon. However, thyroid is basically a female issue, which is probably why we are left with such inadequate treatment.

NIKEGIRL profile image
NIKEGIRL in reply to FancyPants54

I can only imagine the treatment women have received. Not ok ever. Hearing this reinforces my own feelings of drs who don’t care enough about the people they are suppose to care for. I feel if a dr has lost their passion for their profession why not leave and find another job that fulfills them?

FancyPants54 profile image
FancyPants54 in reply to NIKEGIRL

Trouble is, now, if they did that we'd be woefully supplied with medics. I suspect a lot will leave when Covid subsides. They are burned out as well as demoralised and disinterested. We desperately need those EU doctors we sent home!

CoeliacMum1 profile image
CoeliacMum1

Look at Menopause Dr, Dr Louise Newson pages on social media and her website (link included) she has lots of information She has advice for you to print off and give your GP.

Under 45s should have hormones tested when having symptoms for perimenopause, over 45 it is not necessary to test and should be offered hrt if patient wants to try this.

If your GP is disregarding your symptoms for premature menopause - early menopause on bases of no testing that’s wrong, they should rule this out, if they adamant that your thyroid is ok and not part of your symptoms, and like wise look at thyroid if they think it’s more likely.

I would arm yourself with as much evidence based information, and print off what Dr Louise Newson recommends.

It’s quite commonly known many GPs have very little knowledge of menopause, which is beyond belief seeing as all their female patients they see will go through this is, if they reach that age of course.

One person from each surgery in U.K. can apply for proper menopause training free of charge, send that to your surgery too if you don’t have someone who is already trained there or has specialised interest in this area at your surgery .

Ask if you could see another GP who already has more knowledge in this area, your receptionist may be able to let you know ... at my surgery

You can see qualifications of GPs and their added diplomas that they’ve gained in certain areas.

They will be more inclined to know what’s what, but doesn’t hurt to check Menopause Drs website and correct your GP if what they are doing is wrong.

I find it is best to go to the Dr who has this knowledge in first instance but make them aware that you know the NICE GUIDELINES fill in your symptoms, download the balance app this can then show the GP exactly what is what.

I do know various women are having symptoms and have had Covid possibly Long Covid, and after vaccination and again you might find this information on her website it’s certainly been highlighted on her Instagram page.

My daughter (living at home) unknowingly had Covid March 2020 we thought it was just her tree pollen allergies kicking in as it usually does.

She had her antibodies tested end of June 2020, it was offered to staff as she works as a clinical/forensic psychologist in hospital setting... she now has various Long Covid issues and is being seen at Long Covid department.

menopausedoctor.co.uk/

Search premature menopause there’s a few items on there plus many other topic of information.

Hope some of that is helpful, and you get things resolved promptly.

Shoesandsocks profile image
Shoesandsocks

Hi, I’m brand new to the group and on a journey of recently discovering my own hypothyroidism, iron deficiency anaemia, and being peri menopausal.

My GP said they wouldn’t treat my TSH levels at the moment, my private consultant said they would treat them straight away.

Private consultant also specialises in bio identical hormone therapy, and has recommended more detailed blood tests on day 21 of my cycle to understand if I am estrogen, progesterone, testosterone deficient etc.

I recognise some of your symptoms and my sister has been recently been treated for peri-menopause which has alleviated some of her symptoms.

I’m due the private blood tests this month and private thyroid prescription in Aug.

It’s a personal choice but I believe in functional medicine and being proactive when our body is changing.

For me getting regular detailed blood tests are the way forward as everything else feels like second guessing and I need a consultant to explain the science bit. And it also means being able to confidently rule things out.

L (45 years / female)

🙏

Dottie44 profile image
Dottie44

Sounds like it could be Estrogen Dominance. Maybe a visit to your gyne would help. It's all a balancing act. :)

besttimes profile image
besttimes

The tension and physical symptoms you're experiencing sound very much like PMT, which could be caused by more oestrogen than usual. Is there a pattern? For example, does this only happen following ovulation? The low T3 could be a sign that high oestrogen is interfering with conversion. You may also not be clearing oestrogen as quickly as you once did. Have you made any change to your diet recently that may have scewed progesterone/oestrogen balance? Just some thoughts.

Flossiewestie2020 profile image
Flossiewestie2020 in reply to besttimes

I’m not really sure to be honest! This month I’ve been bleeding since day 14 but haven’t noticed the headaches 🤷‍♀️ I had blood tests on Friday so will see what they say! I’m sure they’ll come back as ‘normal’ 🙄

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