sorry a couple of questions from a newly diagno... - Thyroid UK

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sorry a couple of questions from a newly diagnosed perso.

Carsey2411 profile image
30 Replies

my GP has diagnosed me with underactive thyroid. I spoke to him today and I have antibody test tomorrow before commencing treatment. Does the result impact the treatment?

I first presented with many symptoms back in the summer. One being anxiety. Is anxiety linked to underactive thyroid? I can see low mood is.

TSH 0.35 mIU/L (0.35 - 4.94) 0.0%Free T4 (fT4) 11.1 pmol/L (9 - 19.10) 20.8%Free T3 (fT3) 3.8 pmol/L (2.4 - 6) 38.9%T4:T3 Ratio 2.921 

thanks

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Carsey2411
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Jazzw profile image
Jazzw

Hi Carsey2411. Welcome!

Are those results unmedicated results—no thyroid hormones prescribed yet?

If so, then your doctor ought to be suspecting secondary hypothyroidism (also known as central hypothyroidism), which is when the root cause is to do with a pituitary problem rather than a thyroid problem.

Treatment will be the same whatever the cause, so don’t worry about that part—however, it might be worth finding out if your doctor is considering secondary hypothyroidism (sometimes they need a bit of a prompt!).

Carsey2411 profile image
Carsey2411 in reply toJazzw

no thyroid hormones yet. Why would it be secondary? Sorry I’m so clueless and google confuses more

helvella profile image
helvellaAdministrator in reply toCarsey2411

It might be secondary because your TSH (from the pituitary) is low despite your FT4 and FT3 being low.

In primary hypothyroidism, your pituitary makes more and more TSH to try to get FT4 and FT3 levels up. We'd expect low LT4 and FT3 but high TSH.

In secondary hypothyroidism, the pituitary is failing to increase the TSH it produces. We' expect low FT4 and FT3 and also low TSH. Which is what your results show.

Carsey2411 profile image
Carsey2411 in reply tohelvella

thank you great explanation. So treatment is the same and levels should begin to rise?

helvella profile image
helvellaAdministrator in reply toCarsey2411

Glad it helped. :-)

Levels of FT4 and FT3 should rise. TSH might drop slowly or quickly.

(None of this is simple. Keep asking if you do not understand things.)

Jazzw profile image
Jazzw

Oh and yes—anxiety can indeed be related to hypothyroidism. x

SlowDragon profile image
SlowDragonAdministrator

Important to test vitamin D, folate, ferritin and B12 and cholesterol too

High cholesterol linked to being hypothyroid

Low vitamin levels are extremely common with hypothyroidism

Carsey2411 profile image
Carsey2411 in reply toSlowDragon

Thank you, not sure my GP will sign those off. I’ll try and get them done privately. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply toCarsey2411

Thyroid levels could be low BECAUSE of low vitamin levels

Or

Vitamin levels might be low because thyroid is struggling

But normally when Hypothyroid TSH would be high …and Ft4/Ft3 low

Your TSH is low …..this suggests secondary or central hypothyroidism

see yellow box on this flow chart - secondary hypothyroidism

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Carsey2411 profile image
Carsey2411 in reply toSlowDragon

thanks, this is really useful. Essentially saying to refer.

I eat a very healthy diet, lots of fruit and veg and take multivitamins.

SlowDragon profile image
SlowDragonAdministrator in reply toCarsey2411

Exactly what vitamin supplements

Important to stop taking any supplements that contain biotin 5-7 days before any blood test as biotin can falsely affect test results

Carsey2411 profile image
Carsey2411 in reply toSlowDragon

oh wow. How does it affect results? Push down or up?

SlowDragon profile image
SlowDragonAdministrator in reply toCarsey2411

impossible to say

Doesn’t affect all tests…..but labs can’t usually tell you which might be affected

Also are you taking any supplements that contain iodine. This can suppress thyroid hormones

PurpleNails profile image
PurpleNailsAdministrator

Antibodies TPOab (Thyroid Peroxidase antibodies) & TGab (Thyroglobulin antibodies) will show if you thyroid is affected by autoimmune attacks.

The damage is to the thyroid and therefore is a primary issue with thyroid -  this damage gradually lowers function but this usually causes the TSH to increase the signal & rise to compensate for the low thyroid levels.  

The TSH (thyroid stimulation hormone) is a pituitary hormone which signals thyroid.  The pituitary is stimulated by the hypothalamus and if the issue lies with either the pituitary or hypothalamus then it’s called secondary or central hypothyroidism.  Secondary because the thyroid is healthy but the signal is at fault. 

Most doctors are not knowledgeable about secondary hypothyroid.  

Your TSH is low (almost below range) & you usually don’t see that unless thyroid levels are above range.   

Doctors are often very quick with information on results - are you certain your doctors is saying your levels are “under” active & you need hormone “replacement” - because many doctors would say unless FT4 & FT3 is under range & TSH above replacement treatment is not required yet.

Doctors do tend to focus on the TSH & they especially do not like it under range & often suggest treatments to “make” the TSH rise it into range.  

This involves lowering FT4 & FT3 with an antithyroid treatment - I have seen many reports of doctors still prescribing antithyroid even when FT4 & FT3 are not high in range.  

Carsey2411 profile image
Carsey2411 in reply toPurpleNails

yes def said that, I checked. It’s my Second TFT with same results. Due a third in 6 weeks but asked him to do antibodies now as I’ve had 2 TFT. I did ask if it was pituitary he said no. My LH serum is below range and by oestrogen very low, I think only LH serum is pituitary related though.

PurpleNails profile image
PurpleNailsAdministrator in reply toCarsey2411

LH is a pituitary hormone.   

If antibodies are negative will doctor still treat as your low levels. 

Carsey2411 profile image
Carsey2411 in reply toPurpleNails

sorry I am a little confused. I am not sure if dr will still treat?

Jazzw profile image
Jazzw in reply toCarsey2411

Yes, they’ll still treat. Whatever the cause of your low thyroid hormones the treatment is the same. x

Jazzw profile image
Jazzw in reply toCarsey2411

 I did ask if it was pituitary he said no. My LH serum is below range and by oestrogen very low, I think only LH serum is pituitary related though.

How on earth has he determined it isn’t your pituitary? Does he have X-ray eyesight like Superman? :) With other hormones below range as well, that makes it all the more likely there *is* a pituitary issue. It sounds like he might be out of his depth. :(

However, always good to keep GPs on side… Is there another doctor in the practice you can see? If not, it might be worth asking if you can be referred to a specialist.

Here’s a bit more about what can happen when you have a pituitary gland that isn’t doing everything it should (please don’t panic about anything written here—it might not be what’s going on but I think it’s good to know about the possibility and to see whether anything else here rings a bell): thyroiduk.org/related-condi...

How old are you Carsey, if you don’t mind me asking? And what was it that made you go to the doctor in the first place—what symptoms did you have?

Carsey2411 profile image
Carsey2411 in reply toJazzw

42. The main symptom I presented with in the summer was anxiety, physical rather than thoughts (now after a while I have both). Anxiety is worse in the mornings and seems to reduce afternoon/evening. Could this be related to cortisol? Irregular periods and then insomnia. Was diagnosed with an anxiety disorder. Another 2 blood tests and decreases in oestrogen and nurse suggested Peri menopause due to that and symptoms. I noticed my TSH was low so I pushed for TFT which shows FT3 and FT4 were low, this was autumn repeated bloods after Christmas and all still low. So 3x TSH low and 2x FT4 low and only once they have tested my FT3 which was low. Dr told me to look at symptoms of underactive thyroid of which I have quite a few listed. suggested to wait another 6-8 weeks and repeat TFT for a 3 time with a thyroid antibody test. I called yesterday and pushed for antibody test now as my last TFT was only 11 days ago.

Dr said I could start treatment but worried it could worsen anxiety? I asked if anxiety was a symptom of thyroid disorder, replied no.

Thanks for all your help and responses

humanbean profile image
humanbean in reply toCarsey2411

Anxiety is worse in the mornings and seems to reduce afternoon/evening. Could this be related to cortisol?

Yes. Cortisol which is too high or too low can cause all sorts of problems with mood, depression, and anxiety.

It isn't wise to look up symptoms of low cortisol and high cortisol on the web and decide on that basis which you might have (if either). Take it from me - I thought my cortisol was low on the basis of symptom lists and treated myself with supplements to raise cortisol. It turned out I had high cortisol and I was making myself much, much worse.

The best test for cortisol is a four-part saliva test which also includes DHEA.

regeneruslabs.com/products/...

You can get more info about Regenerus Labs here :

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

To get an idea of the kind of information you can get from saliva cortisol tests see this thread :

healthunlocked.com/thyroidu...

PurpleNails profile image
PurpleNailsAdministrator in reply toCarsey2411

“Dr told me to look at symptoms of underactive thyroid of which I have quite a few listed” 

Did doctor suggest a site?  The first thing doctors do is dismiss inaccurate sites, dr should be able to discuss this with you.  If dr had looked up symptoms of hypothyroidism themselves they might know anxiety is thyroid related.  Although the NSH website only mentions is as developing in older people not in children.

Physical anxiety (such as shaking), insomnia are more typically hyper symptoms but there can be a diverse list a symptoms and other factors can be affect you. Irregular periods I’d also related to thyroid.  

Your FT4 & FT3 are low and as you mention worse anxiety in morning checking cortisol might be good step.  

You have been right to push for FT4, FT3 & antibodies.  I hope your doctor treats you based on low FT4 & FT3 wether your antibodies are positive ore not.  Starting dose 50mcg.

“Dr said I could start treatment but worried it could worsen anxiety? I asked if anxiety was a symptom of thyroid disorder, replied no”

This just shows no logic.  Anxiety is thyroid related.  If they are adamant anxiety isn’t related why would starting treatment cause it.

DippyDame profile image
DippyDame

The important markers are FT3 followed by FT4 ( thyroid hormones)

They need to look beyond TSH which is not a reliable marker.

thyroidpatients.ca/2021/07/...

Your TSH, a pituitary hormone is not managing to reflect the level of your Frees....with your abysmally low Frees your TSH should be higher and that would initially alert medics to the possibility of hypothyroidism.

Your pituitary gland is not alerting your thyroid gland via the pituitary hormone TSH that it needs to produce more hormone ....it is " faulty"/ failing so is not recognising the low hormone levels and TSH remains low

So, a pituitary to thyroid communication problem....but not a serious one so long as it is recognised and treated with adequate replacement hormone.

This is referred to as secondary or central hypothyroidism....a misleading term I think!

Your Frees are abysmally low so further investigation is required.

You need to optimise vit D, vit B12 folate and ferritin ....to support thyroid function/ conversion.

Medication with replacement hormone T4/ levo should be initiated at 50mcg, after 8 weeks repeat the test and the new hormone levels will pointbthe way forward

Post those results for advice

Anxiety is a symptom of hypo...there are many!

This might help...

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

The antibody test will rule thyroid autoimmune disease ( aka Hashimoto's disease) either in or out...a common cause of hypo. Raised antibodies = Hashi's

The medication will be the same but a gluten free diet usually helps

Further info including i fo on Hashi's if required

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

Good luck....we're all here to help

Carsey2411 profile image
Carsey2411 in reply toDippyDame

These links are so useful. Thank you for taking the time to respond. I recognise a whole host of those symptoms. I take vit d and b12 will have a look at the other ones.

I knew my frees were low but seems within range?

DippyDame profile image
DippyDame in reply toCarsey2411

Being within range isn 't good enough....everyone is different and we aim for the actual point within the range where we feel better.

Generally our Frees should sit somewhere approaching 75% through their respective ref ranges.....yours are far too low for wellbeing.

Dr said I could start treatment but worried it could worsen anxiety? I asked if anxiety was a symptom of thyroid disorder, replied no.

This is rubbish.....medics are not generally well informed about thyroid disease beyond basics, and as your GP shows, even that can be poor. It is a medical scandal and the reason nearly 130,000 patients have arrived here seeking help

Your GP should now initiate treatment with replacement hormone levothyroxine/ T4....starting dose 50mcg. Test again after 6/8 weeks, the results will point the way forward re increasing dose

Post new labs and we will help.

FAB-jellybean profile image
FAB-jellybean

Hi Carsey2411, I can't add anything about the thyroid that the brilliantly informed folks here have shared but just want to say welcome and to give a little more perspective about anxiety and the perimenopause. I was diagnosed hypothyroid 20 years ago although had issues for at least 10 years prior to that (I've just got a hold of a copy of my GP and hospital records which confirms I was first tested and was showing as hypothyroid in 1992 😳). In all the time I have been hypothyroid I have been both under and slightly overmedicated and have never experienced anxiety. I am now in perimenopause and have been on HRT for 2+ years but 7 months ago I discovered that I was quite badly undermedicated during that time. Now, with the help of the lovely people here, I have got my thyroid levels much closer to where they should be and when my HRT was changed from cyclical to continuous that is when I started experiencing anxiety, just 3-4 months ago. I had also tried taking Ashwagandha around the same time to help balance my hormones and that was when all hell broke loose. I reacted very badly to that and the progestin in the HRT I was using and my anxiety went through the roof, completely debilitating. I have changed HRT meds to natural progesterone and all my other horrible side-effects have left except the anxiety. I know that other people do experience anxiety when both under and over-medicated (what the doctors will refer to as hypothyroid or hyperthyroid) so it could be your low frees that are causing the anxiety but it is also very possible it's your other hormones that are causing it.

Anxiety during the perimenopause is very common and there is a thread on the Menopause Matters forum specifically for people who are hypothyroid if you want to have a look and get some extra information about that. There's also lots of other information there about everything perimenopause and menopause.

menopausematters.co.uk/foru...

Get your thyroid hormones sorted out first and when they are they where they need to be you'll probably find it helps to balance your other hormones at least somewhat (I believe that's why I ended up with issues with the HRT making me oestrogen dominant). It can take months to balance your thyroid hormones so don't expect a quick fix. If at that point you are still experiencing the anxiety you might want to consider asking to be referred to a local menopause clinic who will go through your options and will hopefully look into your pituitary's part in it all (or at the very least consider it). If, in the meantime you need medication to help with the anxiety, just be aware that they may offer you propranolol, a beta blocker commonly prescribed to reduce the physical symptoms of anxiety. It's not suitable for anyone with hypothyroidism (it affects T4 production and inhibits the conversion of T4 to T3), psoriasis, low blood pressure and asthma. I very reluctantly had to relent to taking medication a couple of weeks ago as it's really affecting my ability to function properly. I don't have asthma but have the other 3 and my particular hypothyroid issue is that I don't convert T4-T3 very well, and despite knowing this my regular doctor prescribed me this along with sertraline as it takes a good 3-4 weeks for the sertraline to start working and can make the anxiety worse before it starts to get better. I took 2 of the tablets before researching it properly (I actually can't believe I was so stupid as to do that!) and I'm sure you can imagine what that did to my anxiety. I got myself in such a state, a different doctor had to prescribe me diazepam, which is getting me through the worst of it until the sertraline starts working. I spoke to a different doctor again yesterday who has told me that I need to give the new HRT 3-4 months to settle properly and if I'm still struggling at that point they will refer me to the menopause clinic, which has reassured me a little. I currently feel like my normally very rational self has been abducted by aliens and an irrational, emotional wreck who looks like me has been left in my place! The joys of hormones!

Best of luck. Let us know how you get on. 🙏

Carsey2411 profile image
Carsey2411 in reply toFAB-jellybean

wow, thanks for such a detailed reply. I am so sorry you are going through this.

I have taken ashwaghanda have done for over a year and it has helped in the last, so hoping it doesn’t impact me now.

I am also on HRT cyclical, gel and Utrogestan

I hope you feel better soon.

Hormones!

FAB-jellybean profile image
FAB-jellybean in reply toCarsey2411

Hormones indeed. There's a few threads on here about Ashwagandha and apparently you shouldn't take it continuously, you should have a break from it regularly from what others here have said. I found the following one particularly helpful in guiding my further research. It would appear that I'm T2 immune pathway dominant and it may be that you've changed dominance with the bother with your pituitary/thyroid hormones. Just something for you to think about. Might be worth stopping it for a few weeks, just to see how you feel. The break will probably do you good anyway and if you feel no difference or worse at least you'll know it isn't that causing the anxiety and can safely start taking it again. I was unaware it was high in iron, so you shouldn't supplement iron and you should have your iron levels checked regularly when on it. 🙏

healthunlocked.com/thyroidu...

Starling87 profile image
Starling87

Glad everyone has given you excellent advice so far, and I definitely concur with also getting a full vitamin check as I've started feeling much better since I got my D, B, and folate levels in check..

A lot of us here suffer from thyroid related anxiety and it's especially tricky as we age since hormones get all jumbled about.. But I think you're in good hands here and I hope your journey will be an easier one.

Carsey2411 profile image
Carsey2411 in reply toStarling87

thank you

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