Thyroid levels back to normal, confused, do i s... - Thyroid UK

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Thyroid levels back to normal, confused, do i still need Levothyroxine?

Hi everyone, im new here.

Im a 27 year old male, was diagnosed with underactive thyroid in July 17, and was initially started on 25 mg levo thyroxine then put up to 50, but got a lot of weird side effects so was put on 50mg on another brand and had no side effects. My TSH was spiking loads (highest being 24 around end of 2017. I had been borderline high on TSH as a teenager but nothing ever came of it.

Did a lot of reading and trying to understand things, pushed the doctors for free T3 and T4 tests which came back with the T4 slightly low.

Fast forward on, had antibodies test in Jan 18, my blood results were 2 for thyroid antibodies and 0.4 for TSH antibodies which i was told was perfectly in range so unlikely to be Hashimotos. My TSH was 17 in that test though.

Last blood test was Sept this year, where my TSH was 4.9, free T4 14.4 and free T3 4.9. So back to a normal range almost.

When the thyroid issues started in mid 2017, i was in a very stressed state in general, id come off sertraline after 5 years, taken for anxiety, and i wasnt eating as healthy as i should have been. I was exercising though, doing kickboxing classes once a week, which potentially added to my stress despite the exercise aspect.

Anyway, my symptoms have eased over the last year and a half, and although i feel like ive forgotton what my baseline was before the issues started, i feel a lot more normal and functional. Parallel with this I have cleaned up my diet (cutting out gluten for most part which i seem to have a sensitivity to, and lowering sugar intake a lot)

I am confused as to where i should go from here. I am aware that starting thyroid medication is often irreversible for many reasons, but i am not sure i am fully hypothyroid, and i dont seem to have hashimotos. I often had a bad diet growing up and only cleaned it up in my 20s, but have slipped at times due to depression and anxiety, and i feel like my thyroid issues are very likely a response to bad diet and damaged gut health.

I have recently found heart palpitations/quickening heart rate and sometimes weird side effects such as blurry eyes (even though had eyes checked and they were fine), the other day i had my vision suddenly shake randomly whilst i was sat still. If i have much gluten in a short time period, or a lot of sugar or alcohol (rarely) i notice that it affects me quite a lot and i get brain fog/fatigued easily until my body recovers.

I feel at a crossroads, could my body be leveling out and producing T4 again on its own to a normal standard, and my Levothyroxine be uneccesary anymore/giving me side effects from to much?

I am moving to new area this week and with that a new doctor, previous one was ok but reluctant to give me blood tests less than 6 months apart. Doesnt seem like many good doctors in new area. Will try to get another blood test to see if levels are still the same, but where do i go from here of my own accord? I have become acutely aware of how conflicting the UK doctors seem to be about hypothyroidism.

Thankyou, and apologies for long post!

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Thankyou, thats probably the most likely. I dont have any history i know of thyroid issues in family, but brother did have borderline high Tsh. The weird thing is i have always been, and remain, very sensitive to overheating, which is a symptom of hyperthyroidism right? Some long standing symptoms i never thought much of (looking back to teen years) have been more in line with hyperthyroidism, such as the heat thing, and anxiety/racing heart. But i guess those could be anything

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Those symptoms also relate to Hashimotos as explained above by rfu :-)

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Thanks marz!

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Always Give the ranges for test results as labs vary,

You need to check B12,D3 ferritin and folate . Recheck thyroid hormones in a couple of months given your current issues.

If you can afford it look at having private blood tests .There have been recent sales on Blue Horizon and Medichecks usually have deals on a Thursday

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Treepie, thankyou for this, i ordered a blue horizon thyroid blood test as there was a new year sale on, im curious, what is the reason for waiting a few months for checking thyroid hormones? Thankyou!

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With hashimotos fluctuations occur . I think thats why I suggested waiting a while ,apart from the cost! Then again I cannot remember why I added the sentence,maybe I need an increase!

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Ha, thankyou Treepie! Solid advice

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If your TSH is over 4 on 50 mcg levo, then not only are you hypo, but you are under-medicated.

I think most of us go through a period of denial, but you should be aware that it is very, very rare to be misdiagnosed as hypo, for the simple reason that doctors hate diagnosing people as hypo and will do anything to avoid it - like setting the goal for TSH at 10! If yours was 17 on diagnosis then you were absolutely hypo, and a bad diet wouldn't cause a TSH that high. Plus, if your bad diet bad diet impacted your gut, and you are gluten-sensitive, then that sounds very much like Hashi's. Also, you were probably hypo for a long time before that diagnosis, and that's why you needed antidepressants.

You may not have high antibodies, but antibodies fluctuate. So, just because they were low at the time of that blood draw, doesn't mean that they were low the week before, or the month after. Also, you don't absolutely have to have high antibodies to have Hashi's, because the antibodies are not the disease, just an indication of the disease. Have you ever had an ultrasound of your thyroid?

So, what you should do next is insist on an increase in dose, and preferably get private labs so that you get a more detailed picture of what's going on. You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

When you get those results, post them on here, with the ranges, and we'll be able to tell you more. :)

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Thankyou very much everyone, this is just the kind of stuff i was looking for, i will go and get these things checked out and report back.

I definitely think theres part of me that wants to deny it so i need to face the facts and get more checked.

Thankyou!

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Oh and I havent had an ultrasound, the doctors were hesitant to do more tests, they only did free T3 and T4 because i asked, they were going off TSH for their diagnosis from the beginning

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Colours, it's possible that no-one who replied to you has seen your replies - unless, like me, they're just nosey and what to see if others have replied! On this forum, you have to click on the blue 'Reply' button under the comment you're replying to, if you want the person to be notified. Otherwise, they will just think you haven't replied. :)

The majority of doctors are totally ignorant about thyroid, and tend to think that prescribing levo until your TSH gets back into range is all they need to do. They are totally wrong, of course! Well done, you, for getting them to test the Frees! Pushing for an ultrasound next will show if there's any damage to the gland, likely to have been caused by Hashi's. It's always good to know, even thought there is not treatment or cure for Hashi's - forewarned is forearmed, as they say!

So, that's your goals for 2019: get an increase in dose and an ultrasound. Happy New Year! :)

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Thankyou greygoose, didnt realise that!

Will definitely push for ultrasound, i think lack of faith in the doctors has put me off facing up to it for too long, so i will start moving towards those goals! Will report back with update, thankyou!

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Happy new year to you to!

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To be brutally honest, we have to lose faith in doctors to be able to get well. Those that insist that doctor knows best, usually stay sick - unless they are one of the lucky ones with no complications. But, we have to push to get what we can out of the system - which, after all, we do pay for! :)

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Has anyone experienced the blurriness in eyes that i mentioned? Or Vision shaking at all whilst hypothyroid?

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Yes . Not the vision shaking , but I’ve experienced the blurriness at times when I’m under medicated or my symptoms flare up , it’s quite a common symptom of hypothyroidism , it should abate once you’re on the correct dose for you .

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Thankyou yellup!

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I wouldn’t presume to offer advice about Thyroid conditions but, did you wean yourself off Sertraline, or stop abruptly 🤔 It is possible that indirectly this has added to your problems 🤔 xB

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Weaned myself down to a 25mg dose, then every other day, then i think every three days, and then stopped. I have to admit i had a lot of side effects such as shaking hands and others

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Yes, i realised afterwards that i wasnt sure i even needed to be on them.. have you heard of abrupt ending of sertraline triggering hypo then?

A lot of cancer and heart issues in my grandparents and family of that generation, uncle died of heart attack at 50, mums cousin also. Lot of mental health issues too, brother is bipolar, aunt was schizophrenic. Not aware of any others but may well have been undiagnosed ones too.

Thats not goodthat its getting worse in your generations! From the sum of all my research ive been focusing on fixing diet and gut as a lot of the research for most modern illnesses seem to tie in with sustained consumption of sugar and inflammatory foods

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Wow ok, i knew there was some cases of that but didnt think it was so prevailing, makes complete sense though, feeling energyless and terrible all the time is bound to make people depressed. Thanks for your comments RFU, i'll be sure to look into that! and best of luck to you.

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Hi,

You've already been given good comments and advice.

I will just add that there's no such thing as "borderline high" TSH. In some countries they consider hypo (and start treatment) from 2.5 onwards. So you are either high or not. For years I was fobbed off because my TSH never reached the required "10". GPs were always reluctant to run any tests, they'd always say come back if it doesn't improve on its own. And as weight piles up, they just class you as a lazy person (in my case, I was previously an athletic one!). The first time one eventually ran a test, my TSH was already 3.5. I didn't know then what I know now, so I accepted that it was "within range", although I felt awful.

If your all time low has been a 4.something, there's no wonder you still feel rough.

I started to feel human again when my dose was upped to 100 mcg, and that was in the middle of the summer heat wave, which definitely helped, for the first time in years I had energy!

Symptoms have not gone fully (winter is taking its' toll), so now I'm looking at adding T3 or moving to NDT.

It is important to check nutrients too. My ferritin has been low for years and years, and now I know that is crucial to work out with thyroid issues. Also check your cortisol, as that may reveal how much damage your adrenals have had after years of hypothyroidism or unsuitable treatment.

Good luck!

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Thankyou Kitten! I am definitely going to be getting all my nutrients checked and good to hear you felt better after upping dose, i going to request to be upped to 100 too.

Good to know RE 'borderline' as well, thankyou!

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Hi

You have had some very good advice from reallyfedup123 and greygoose. One thing I have learnt on my thyroid journey is the specialists and GP's don't always know best. They go by very outdated NHS guidelines and one tablet (levo) does not suit all, they are too quick to dish out anti depressants

If I listened to the endo I saw, and one of the GP's I saw who said it was all in my head, I really don't know how I would of coped with my life anymore, it got that bad, but, with the knowledge of all the people on here and also refusing the anti depressants my endo tried to give me, I am getting better.

This thyroid journey is not a fast one either, you really have to make sure you take it slow and look after yourself, by this I mean looking at your diet and keeping on top of your vitamin levels.

Remember you need to take control of your own health and don't get intimidated by them. As reallyfedup123 said "don't let the buggars grind you down.

I look at GP's and specialist now as if they are strangers, hell bend on just keeping me like a zombie. Not all of them are like this, but I am yet to find one that understands and the number of members on here says it all too.

I see it as they see me for 10 minutes if that, that are not living my life and have no idea how I feel, and therefore I will not be told what I should do by them.

I have experienced the run around for too long now.

Take care & Best Wishes

Peanut31

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Thankyou Peanut, i definitely relate to that, it feels so easy for them to sideline you and you start questioning what is real anymore and adding medication on top of medication to patch the wound without treating the cause is such an old fashioned thing now and yet feels so prevalent! The way you put it is exactly right, im finally starting to realise I have to be the one to solve this and they arent reliable

Im looking at my gut health especially and came across a doctor that seems very genuine called Dr Ruscio, who wrote a book 'Healthy Gut, Healthy You' which so far has been helping me focus my diet!

Thanks again

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Hey guys

Got a full thyroid check from Blue Horizon, results below.

Havent changed medication up to 100mg Levo as not been able to register at surgery in the town i moved to yet, but will be doing that very soon.

So My TSH has remained constant with last blood test about 4 months ago , but as stated previously still high.

Im not that knowledgeable on Reverse T3, what does this indicate?

Vitamin D deficiency probably makes sense as i work indoors a lot and dont spend as much time outside as i should - although trying to more and more. Does this impact thyroid much?

Thankyou in advance for any comments!

EDIT: Just to add to this - ive been researching Reverse T3 being high - and came across this article - invivoclinical.co.uk/invivo...

As mentioned before, im not that clear on its function so im swinging for the wind here - but they mentioned reverse T3 can be high due to starvation and extreme carbohydrate restriction - i have been doing a pretty consistent time restricted feeding routine for the past 8 months or so, usually not eating for a period of 14 hours per day (so keeping all my food intake within 10 hours - usually 9am to 7pm) and have been cutting down my carb in take a lot, as trying to heal my gut and lose weight by countering my slowed metabolism due to thyroid - could that be the cause of the Reverse T3 or unlikely to affect that much?

Further note - The blood test was a fasting one and i had fasted for about 16-17 hours by the time the blood was drawn so this also may have contributed.

Biochemistry

HbA1c-(IFCC) 33 /// 20 - 42 mmol/mol

hs-CRP 0.53 /// <5.0 mg/L

Ferritin 184.0 /// 30 - 400 ug/L

Magnesium 0.98 /// 0.66 - 1.07 mmol/L

Hormones

Insulin 52.0 /// <173(Fasting) pmol/L

Thyroid Function

TSH H 4.97 /// 0.27 - 4.20 mIU/L

T4 Total 92.5 /// 66 - 181 nmol/L

Free T4 18.40 /// 12.0 - 22.0 pmol/L

Free T3 4.63 /// 3.1 - 6.8 pmol/L

Reverse T3* H 26.0 /// 10 - 24 ng/dL

Reverse T3 ratio L 11.59 /// Normal >15 Ratio Borderline 12-15 Low <12

Immunology

Anti-Thyroidperoxidase abs <9.0 /// <34 kIU/L

Anti-Thyroglobulin Abs <10 /// <115 kU/L

Vitamins

Vitamin D (25 OH) L 36 /// Deficient <30 nmol/L Insufficient 30 - 50 Consider reducing dose >175

Vitamin B12 433 /// Deficient <145 pmol/L Insufficient 145 - 250 Consider reducing dose >569

Serum Folate 24.20 /// 8.83 - 60.8 nmol/L

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