Hypothyroid medication

[Dshadzz07]

I’m a 20 year old man. So I have had a health anxiety for about 9 months and then was diagnosed with an underactive thyroid in October and took my meds for two months and it went from 22 to the normal level while I was taking just the 25mg levothyroxine tablets. So I stopped and since my anxiety has got worse but I don’t know if it could be other things, my most recent test was early January and it was borderline within level. Should I restart my medication despite it being borderline ok, like I don’t know what to do. Should I take another blood test at the gp in a couple weeks to see where it’s at now. I just need some help. Thank you.

[fuchsia-pink]

Welcome to the forum.

25 mcg is a very small "starter" dose - usually for the elderly and small children. A more usual dose is 50 mcg or 1.6 mcg per kg of body weight. Once on medication, you usually need to take it for life. You should have your bloods retested every 6 - 8 weeks and your meds increased until your TSH is not just "in range" [which is hopeless] but ALWAYS under 2 - and your actual thyroid hormones - free T4 and free 3 - are nice and high in range - again not at the barest minimum level of the range but a good 2/3 or higher through range.

A symptom of hypothyroidism (under-active thyroid) is anxiety - so it's not that surprising you aren't feeling great if you have stopped taking your meds.

You need to start re-taking your meds AND have a new blood test. It's not enough just to test TSH and, if you're lucky free T4. See if the GP will do full testing - that means TSH, free T4, free T3, thyroid antibodies and key nutrients - ferritin, folate, vit D and B12. I've had some success with mine by saying that these are the tests recommended by Thyroid UK. And if s/he can't or won't do all the tests you need, I'd seriously consider having them done privately - you will see lots of posts about private testing and discounts are available via the main Thyroid UK site.

Always have an early morning blood test, when TSH is highest and always always get your actual blood results afterwards. You don't want guff like "normal" or "in range" - you want actual numbers, and the related lab ranges (which vary from lab to lab) Post them here and the lovely people here will help you to understand them

[Dshadzz07 in reply to fuchsia-pink]

So do you think I should restart levothyroxine right away and test in 6 weeks or do bloods as soon as possible to test how everything is because I do get all my results uploaded to me from my gp so I can see them all and the numbers.

[shaws Administrator in reply to Dshadzz07]

I think you should restart.

Always get the earliest appointment for your blood draw (even if you have to make it weeks ahead) - TSH is always highest then and that seems to be the be the No.1 for GPs check.

It is a fasting test (you can drink water) and you can eat after blood is drawn.

Don't take any thyroid hormones before the blood draw. Take afterwards (always with one glass of water).

The aim is gradual increases of levothyroxine - which is also called T4. Levothyroxine is an inactive hormone and has to convert to the 'active' thyroid hormone - also called T3 or liothyronine.

The aim is a TSH of 1 or lower with both Free T4 and Free T3 in the upper parts of the ranges.

Request GP to also test B12, Vit D, iron, ferritin and folate as we can be low in these too. We are aiming for everything to be optimal and to feel well again.

Always get a print-out of your results for your own records and post if you have a query.

[ThyroidalLinda in reply to Dshadzz07]

Hi.. i've researched thyroid issues for 8+ years.. above advice was great.. i'll add..Thyroxine meds like levothyroxine take approx 3 months to get into your system, build up stores and for your brain/body/hormones to adjust and settle.

Your body can store 14 days worth of T4 and it should take 14 days to be removed from the body.. if you stopped taking it and you crashed you body is depleted.

I agree that the TSH ranges of 'normal' are a joke.. def get actual numbers.

Find your optimal numbers.

Eat a few Brazil nuts a day for the selinium for thyroid health.

Avoid foods such as...... peanuts/soy/soya/miso/corn / uncooked greens such as kale all these lower your thyroid funtion (great if overactive thyroid)

Do eat.... sea salt, seaweed for the iodine.

Many find reducing gluten products helps.... gluten/wheat/pesticides may be what's causing the body to be triggered to attack itself.

There is also a tablet that can be taken each eve to draw away the thyroid antibodies...

PMG Thyrotrophan.. get both antibody tests to check.

Please adjust everything slowly (3 months) and incrementally.

If still struggling you may need T3 meds and reduce T4.

Also eat healthy, clean/homegrown/organic veg,

Get circadian rhythm proper sleep, avoid stress as much as poss as it can flare up attacks and leave you crashing/sleepy the next day.

Sleeping/tired in afternoons is a sign of underactive thyroid...

Sleepy at tea/early eve 7pm ish is a sign of overactive.

Look into Hashimoto's thyroid as it is most common.. it's where you swing high and low due to autoimmune attacks..your body thinks your thyroid is a foreign body so sends antibodies to kill it... over time you may need more meds.

Hope this helps.

Linda.

[Lulu2607 in reply to ThyroidalLinda]

Hi Linda, good advice. Masters level ha ha 🙂 I just hope it's not too much for a young newbie to take in at the moment. Re ranges, you're right, but it made me wonder if there should be two sets of ranges and the second set should be lower, for those currently being treated on levo. My medic told me clinical UK guidance is that once on levo TSH should be under 2.5 and T4 at top of the range. If this is so, why aren't Drs abiding by this guideline? Just a thought.

[SeasideSusie Remembering in reply to ThyroidalLinda]

ThyroidalLinda

As you have done research, will you please post links to the statements that you have made as requested in posting guideline 15

15. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

Particularly the following:

1) Your body can store 14 days worth of T4 and it should take 14 days to be removed from the body..

As Levo has a half of 7 days it wouldn't be possible for all to be removed in 14 days, more like 6 weeks - see:

drugs.com/medical-answers/l...

"Levothyroxine will stay in your system for around 4 to 6 weeks. It takes longer for people with hypothyroidism to eliminate levothyroxine (closer to 6 weeks) than those with normal thyroid function."

2) There is also a tablet that can be taken each eve to draw away the thyroid antibodies...

Please provide information about this.

**

Eat a few Brazil nuts a day for the selinium for thyroid health.

Brazil nuts only contain selenium if they are grown in selenium rich soil and this needs to be stated on the packaging, ideally with the amount of selenium per serving.

Selenium content in Brazil Nuts:

honey-guide.com/2012/11/19/...

Do eat.... sea salt, seaweed for the iodine.

As iodine solution used to be used as treatment for overactive thyroid and can make hypothyroidism worse, we always advise members to test their iodine level before supplementing with any form of iodine.

[tattybogle in reply to SeasideSusie]

Hi Seasidesusie , Re. the tablet mentioned by ThyroidalLinda supposed to 'draw antibodies away form the thyroid' I looked it up last time ThyroidalLinda posted about it , I think it needs treating with caution until more is known about it :

Manufacturers state:

"PMG Thyrotrophan

"Nutrients & Ingredients

Each Serving Size (1 Tablet) contains:

Calcium 30 mg,

Sodium 10 mg.

Proprietary Blend 109 mg: Magnesium citrate and bovine thyroid PMG™ extract (processed to substantially remove its thyroxine).

Other Ingredients: Calcium lactate, cellulose, and calcium stearate.

*This features our exclusive 'Protomorphogen ' extract . (Trade Marked ) "

So it's not really clear what it is, except cow thyroid with most (?) of the T4 removed . and something else they've invented called 'Protomorphogen extract' which they don't tell us any more about.

And some calcium /sodium/magnesium

"PMG thyrotrophan 1 tablet at night to draw away the antibodies away from your thyroid." ~ qoute from ThyroidalLinda.

Apart from the ''PMG' bit (which we have no idea why they mean by other than "This features our exclusive 'Protomorphogen ' extract . (Trade Marked ) " )

I'm very curious as to how this combination of ingredients could 'draw antibodies away from the thyroid' ?

sound a bit like a sales ploy to me .. if they had any science supporting it 'draws antibodies away from your thyroid' . surely they 'd tell us what the mysterious PMG (protomorphogen extract) actually is .

And if it's TPO antibodies they mean ... these ones don't do any damage to the thyroid , so it's not at all clear how 'drawing them away from it' ..would help anything anyway .

[SeasideSusie Remembering in reply to tattybogle]

I'm very curious as to how this combination of ingredients could 'draw antibodies away from the thyroid' ?

sound a bit like a sales ploy to me .. if they had any science supporting it 'draws antibodies away from your thyroid' . surely they 'd tell us what the mysterious PMG (protomorphogen extract) actually is .

And if it's TPO antibodies they mean ... these ones don't do any damage to the thyroid , so it's not at all clear how 'drawing them away from it' ..would help anything anyway .

I agree with everything you say Tatty, the first thing I thought when I read it was what good is it going to do because antibodies have a job to do. Thank you for taking the time to respond, shame ThyroidalLinda hasn't.

[playtime2 in reply to ThyroidalLinda]

All Good Suggestions.

[Dshadzz07 in reply to fuchsia-pink]

Also what are the normal ranges of TSH, Free T4 and Free T3.

[Dshadzz07 in reply to Dshadzz07]

Also here is my results back in October, I was low in folic acid. I’ve been taking a multivitamin/nutrient to keep everything at a normal level

Results

[SlowDragon Administrator in reply to Dshadzz07]

Your Ft4 was very low and TSH as result was rising

GP should have prescribed 50mcg levothyroxine as STARTER Dose

Which brand of levothyroxine did you start on

Many people find different brands are not interchangeable

Teva brand especially upsets many people

Some people do need to start even slower than at 50mcg

Alternatively cut 50mcg tablets in half and take half tablet waking and half at bedtime

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

ALWAYS test early morning and last dose levothyroxine 24 hours before test

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[SeasideSusie Remembering in reply to Dshadzz07]

Also what are the normal ranges of TSH, Free T4 and Free T3.

There are no standard ranges, they vary from lab to lab so you need the ranges from the lab which does your test, you can't use your result with a range from any other lab.

[tattybogle in reply to SeasideSusie]

in case you can't read it clearly at diagnosis in October :

TSH 20

fT4 6.5 [7 -20]

ferritin 64 [20-330]

Vit D 31 [25 -300]

folate 2.4 [4 -20] *(folate deficiency <3 )

**Edit .. your folate /ferritin and vit D are all so dreadful that they probably need supplementing individually , multivit's are a bit useless for this, and GP's are not great at it either , SeasideSusie knows all about what you need to do to sort these low levels out. she'll probably be along later /tomorrow .

[Dshadzz07 in reply to tattybogle]

So how does the FT4 go up also with the levothyroxine? Or do I need to talk something else?

[tattybogle in reply to Dshadzz07]

Basic explanation :

~Thyroid makes T4 (The Hormone you need ) ,

~ If T4 goes too low , the pituitary (brain) notices ,and sends a message (TSH thyroid stimulating hormone) to the thyroid, asking it to try and make more T4 .

~ If your T4 goes down, your TSH goes up .. (and if T4 goes up, TSH goes down again)

~ But If your thyroid is unable to make more T4 , then the TSH goes higher (asking 'louder' for more T4 )

~ Then you get diagnosed as Hypothyroid ~ with high TSH , and low T4.

Levothyroxine is the same substance as the T4 from your thyroid (4 iodine atoms) , so when you take Levothyroxine , your T4 goes up >>> which makes your TSH go down .

~ fT4 (Free T4) is just the name of a blood test that measures how much T4 is 'freely available' ... (some T4 is 'bound' to carriers so if we wanted to measure that as well as the 'free' we would use a 'Total' T4 test (TT4) ..... but Free T4 is what we usually test)

[playtime2 in reply to Dshadzz07]

You normally want to be in the top quarter of the lab's range for Ft3 and Ft4. TSH takes a lot more prep prior to blood draw and is very finiky. I don't rely on TSH. I want my Ft3 and Ft4 to be in the top quarter of the lab's range and I adjust my T3 and T4 meds to get there and keep it there.

[Dshadzz07 in reply to playtime2]

You have meds for T3 and T4 so confusing

[playtime2 in reply to Dshadzz07]

Yes. I take T4 and a little T3. Some people do not convert T4 into T3 as well as they should. T3 is what our body uses. So, if your Ft4 is in a good range, but your Ft3 is low, you might consider taking a little T3 in addition to T4. Some doctors will not give you T3 some doctors will only test TSH.

[Dshadzz07 in reply to playtime2]

Oh so how would I ever be able to get T3 then if mine isn’t converting or is it rare for that to be the case?

[playtime2 in reply to Dshadzz07]

First get tested for Free T4 and Free T3. Both should be in the top 1/4 of the labs range. If your FT4 is low you might benefit from Levo (T4). If your T4 is in the upper 1/4 of the labs range but your T3 is low then you might benefit from taking some T3. T3 is four times as strong as T4 so many doctors will reduce your T4 by four times your T3 Dose. I take 112 T4 at night and 2.5 T3 at around 11AM then another 2.5 T3 around 4 PM. But we are all different. And I am NOT a doctor.

[tattybogle in reply to Dshadzz07]

I deliberately 'didn't go there' with explanations about T3 in any replies yesterday, i thought you'd got enough to get your head round already

but it's important to understand that until you've been settled on a full dose of Levo for at least a few months , it is not possibly know if your T3 level is ever likely to be a problem for you , so no point thinking too much about it yet.

Also T3 testing , and the prescribing of T3 tablets, is an extremely controversial subject amongst GP's and mainstream Endocrinologists.. so asking questions about it is probably not the best way for you to start with your new GP... they'll get very defensive and be unhelpful from the start. They will also assume you've been reading misinformation on the internet .. there is lots .... and then won't take you very seriously after that.

But just so you do understand if you need to:

~T4 (inactive /long life /storage/transport form of thyroid hormone) is turned into T3 (active form ) inside the cells all over your body . And your own thyroid also produces a little bit of ready made T3 directly.

~Most people on levo don't need to be concerned about their T3 level .. it looks after itself .

~ But some find they don't get fully better on Levo alone and they want to find out if they are converting T4 to enough T3 ( everybody converts some , but some do it better than others ..and if your thyroid is very damaged or totally gone, then you loose your little bit of 'ready made' T3 from your thyroid , so you then have less of a 'safety net' if you are one of those who don't convert T4 to T3 very efficiently. )

~ Once you are settled on the proper dose of Levo for a while, and your TSH is back down to 1 or below, then you see what your fT3 level is ,and compare it to your fT4 level. .. but you can't see how good this conversion is unless you're already taking enough Levo (T4)

~ GP's have great difficulty getting fT3 test done (even if they want to ) .. the lab says it's 'not necessary' for hypothyroidism, and they are pressured to reduce unnecessary testing costs . So you usually have get it done for yourself . Most people here do private blood tests when they want their fT3 tested.

~ If fT3 is much lower than fT4 level , then that is an indication that conversion isn't great .

~The first choice is to try and increase the efficiency of your own conversion of T4 to T3 without having to add extra T3 in any form .... by testing and improving selenium / Vit D/ Vit B12 /ferritin / folate etc .

~ If this doesn't improve the levels of fT3, then a prescription of T3 to add to your Levo is one option, .... it's not easy, but it is possible to get a T3 prescription from the NHS .

~ Some people prefer to take NDT (Natural Desiccated Thyroid) ~ instead of Levo +T3 .

NDT is dried and processed pigs thyroid gland. But it's virtually impossible to get an NHS prescription for NDT. so that involves getting a private prescription.

~ and for some people ,at the end of a long frustrating road of getting and keeping a prescription , and then having it messed about with when they feel well, by a doctor who disagrees with the dose they're taking when they feel well, and sick of arguing with doctors and endocrinologist ,some people decide their only option is to learn enough to manage their own thyroid meds including sourcing them without prescription.

[tattybogle]

you mean your TSH (thyroid stimulating hormone) was 22 ? That shows you were very hypothyroid when diagnosed

Did the Doctor explain that in most cases hypothyroidism is permanent, meaning people usually need to continue taking Levothyroxine for life. ?

Levothyroxine is a a replacement hormone , not a medication . ....it replaces what you were missing , it doesn't treat your thyroid to make it get better, hypothyroidism doesn't usually get better.

It was the Levothyroxine that lowered your TSH to (just) within normal levels ,,, if you stop taking the Levothyroxine your TSH will rise again because you won't have enough of the thyroid hormone (hormone is called T4, levothyroxine is synthetic T4)

So yes , you should definitely restart taking your Levo , and then after 6 weeks back on 25mcg , get a blood test, ... (at which point your GP will almost certainly need to increase your dose , The usual starting dose is 50mcg)

[tattybogle in reply to tattybogle]

actually , i've just read your other posts about the heart symptoms, and registering with new GP, so i think you should contact the new GP tomorrow , tell them you stopped the thyroid hormone. and get a thyroid blood test from your new GP as soon as possible.

[Dshadzz07 in reply to tattybogle]

Well I’ll have to wait till Monday, but yes I’ll get some tests done. I didn’t realise it was so permanent, I’ll restart the medication it’s just the 50mg just made me feel quite ill and palpitations and stuff.

[tattybogle in reply to Dshadzz07]

oh yeah , sorry , i forgot it was sunday tomorrow, lol.

yes sometimes people need to start lower than 50 while they get used to it ,and go up gradually , some people are OK staying on just 25mcg , but most will eventually need more than that .

The most common reason for hypothyroidism is the immune system getting confused and it starts attacking the thyroid gland by mistake , so over a long time the thyroid can't make enough T4 anymore, and you gradually start to feel all sorts of symptoms ... (like anxiety for one ) your thyroid hormones run nearly every part of your body from your heart, to your skin, and everything in between .. so if they are not kept at the right level you get all sort of apparently unconnected things going slowly 'wrong'.

This is called autoimmune hypothyroidism ,and because they don't know what to do to stop the immune system from attacking the thyroid , all they can do is replace the low T4 .

The way to find out if that is what caused you to become hypothyroid is for the GP to do a blood test called TPOab (Thyroid Peroxidase antibodies) .

There are a few other causes for hypothyroidism that are not permanent ... but don't get your hopes up to much about that .. it is nearly always is autoimmune .

[ClareP5 in reply to Dshadzz07]

Please get your B12 checked too - I couldn’t tolerate thyroid meds until my b12 deficiency was addressed.

[ThyroidalLinda in reply to Dshadzz07]

Palpitations can be a sign of overactive thyroid but you can have heart irregular beats with underactive thyroid. You need full panel testing include antiperoxidase, And Free T4 and free T3.

Get lab ranges, don't take levo meds day before. Find your optimal and if weight goes up.. ask endo to up the dose.

[Stourie in reply to ThyroidalLinda]

Hi, do you mean not to take meds on the morning of the test until after bloods are done. They have to be taken the day before. Jo xx

[Lulu2607 in reply to Dshadzz07]

Yes, I got palpitations with each dose increase. They do settle down a bit as your body gets used to the meds, but they are a common side effect of levo.

[Anthea55]

Hi Dshadzz07,

As you are new to thyroid problems you may find it useful to look at the ThyroidUK website at thyroiduk.org Lots of helpful info there.

Come back here any time you have questions to ask. We do our best and we've been there too.

[Lalatoot]

When I started out on thyroid mediation it made me feel very ill. This was because I was not on a high enough dose.You need to keep on it an slowly build up your dose.

[SlowDragon Administrator]

When hypothyroid we frequently develop LOW stomach acid in the gut, this leads to poor nutrient absorption and low vitamin levels as direct result

Have you got B12 test result

Other vitamin results

Folate is deficient

GP should have prescribed folic acid for low folate, has this happened ?

Vitamin D is insufficient

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator]

Anxiety is EXTREMELY common hypothyroid symptom

Standard starter dose of levothyroxine is 50mcg. Dose should be increased slowly upwards in 25mcg steps

Bloods should be retested 6-8 weeks after each dose increase

Likely to need several further increases in levothyroxine over coming months

Typically dose is increased slowly upwards until on approximately 1.6mcg levothyroxine per kilo of your weight per day

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

About 90% of all primary hypothyroidism in Uk is due to autoimmune thyroid disease also called Hashimoto’s, diagnosed by high thyroid antibodies

Low vitamin levels are particularly common with Hashimoto’s.

Have you had thyroid antibodies tested, if not request they are

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

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

[DippyDame]

Welcome

You have been shockingly treated and this needs to be turned around ASAP!

The others have already given good advice but I see you are had problems with response to the 50mcg levo dose. Since you appear to be severely hypothyroid it might have been better to split your dose throughout the day( cut the tablet into 2 and take one half in the morning and the other in the evening -an hour before or after food or drink) for maybe a couple of weeks to allow your body to accept the replacement hormone...and then try taking a single dose as it settles.

Some people prefer a morning dose and some evening...you could try both to see which you prefer. It's trial and error...

I'm so sorry you were not given the low- down on thyroid treatment by your GP .you should not have stopped treatment. It's for life, but don't panic you are not taking a drug per se you are taking replacement hormone which is bio identical to that made by the body.

Your anxiety and possibly your heart concerns are highly likely to be due to undermedication....given that you have had heart checks carried out. The heart needs a lot of thyroid hormone. So worrying about heart attacks and the like will only increase anxiety and make symptoms worse...try to relax more. Do you read, listen to music, go for walks, soak in a warm bath...things like that.

Well done for arranging to see your new GP, hopefully this one is clued up and able to help you get over the poor treatment you've experienced.

You will need to be tested 6 or 8 weeks after starting levo again, then tested every following 6/8 weeks, before increasing dose. That, followed by more tests and dose increases until you feel well.

These links should help you understand your thyroid condition and make the journey less anxiety inducing.

thyroiduk.org/

paulrobinsonthyroid.com/sym...

With the correct medication there seems no reason why you won't recover ... be patient. Just don't expect it to happen overnight...there is no quick cure.

We're all here to help, many of us have been hypothyroid for a long time, so we have a lot of collective knowledge and first hand experience....more than many doctors!

Feel free to ask as many questions as you feel need to be answered.

Good luck!

[Dshadzz07]

I think it’s partially my fault for stopping the medication thinking it was fine but I will give the gp a phone on Monday to arrange a talk about it all continuation of my medication as I only have 28 25mg pills

[DippyDame in reply to Dshadzz07]

If you had been given the correct info I doubt you would have stopped taking your medication!

[Dshadzz07 in reply to DippyDame]

I’m just scared that you know I’m 20, I’m quite severely overweight that I’ll never lose it even if my thyroid levels are normal like will I be able to live a normal life once I start taking the medication regularly

[SlowDragon Administrator in reply to Dshadzz07]

Yes, when on the correct dose levothyroxine, and all four vitamins at good levels you should see significant improvements

There are almost 2 million people in the U.K. on levothyroxine

The vast majority do very well…..once on the correct dose

It takes time to build dose slowly upwards

Important to get thyroid antibodies tested if not tested yet

If thyroid antibodies are high, this confirms autoimmune thyroid disease

Come back with new post once you see GP

[Dshadzz07 in reply to SlowDragon]

Thank you so much, I assume mine is autoimmune tbh due to the fact that it runs in my family and that my sister has an underactive thyroid with her TSH was 129.

[SlowDragon Administrator in reply to Dshadzz07]

Sounds highly likely

About 90% of primary hypothyroidism is autoimmune thyroid disease

GP should do blood test for coeliac disease

Is your sister on gluten free diet?

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

NICE guidelines state GP should test all autoimmune thyroid patients at diagnosis

Private test

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[DippyDame in reply to Dshadzz07]

I don't see why not....no need to be scared.But I understand why you are scared, the unknown is often frightening but to move forward we need to confront our fears...and by seeing your GP you are taking the first steps

And as we are always told, the first steps are the hardest

Weight gain is a hypothyroid symptom

Hypothyroid weight gain can only be successfully lost by correct medication.

I lost 3 stone when I became correctly medicated....it just seemed to melt away!!

I was in my early 70s at the time and had been unwell for decades.

You are lucky, you are young, and have the chance to improve your quality of life...now!

Speak to your GP, explain how you feel, re-start your medication and with patience, time and increased doses things will change

Your FT4 is suppressed so it's little wonder you feel as you do

Your mood is likely low...another symptom

Your need to ask your GP about low vit D...it's barely in range.

You've probably been reading about all the challenging issues members here are experiencing, we are the minority,...the difficult to treat cohort.

Hopefully you are in the easy to treat group....that treatment just needs to be initiated.

Chin up...one step at a time!

[Localhero in reply to Dshadzz07]

will I be able to live a normal life once I start taking the medication regularly

Fingers crossed that you should be able to. But, as others have said, it will require you to get your FT4 and FT3 to a good place in their ranges. And this may take some time. So be patient. Also, you may have to advocate for yourself with the NHS as, unless you stumble upon an enlightened GP, they can be quite unhelpful, as you’ve already discovered. (With the numbers you had at diagnosis, yours was certainly not just a mild case. I’d argue as to whether hypothyroidism can ever be mild but that’s another thing.)

It also helps to take the advice others have offered here around vitamins etc. as these things really get impacted by low thyroid hormones yet paradoxically are vital to getting these hormones back to a good place.

On the weight front, you may find it starts to shift when things improve. Or you might find you need to take some action on that front yourself. BUT for now it’s about ensuring good nutrition. Don’t diet or undereat in any form as your body reads this as a form of stress, which just screws with your thyroid even more.

Keep coming back to the forum for advice and updates. I’m in a much better place now thanks to them - life is more or less normal - albeit it has taken a couple of years.

[Timetraveler67 in reply to Dshadzz07]

My son only diagnosed few months back was overweight and like you was concerned but I can reassure you that he has started to lose the weight he’d carried around for years once he was on the right dose. He says he feels so well now. I just wanted to share that with you so please try not to be scared. I wish you well and if you come here your get all the good advice you need everyone here has been through so much and learnt so much and now they help others like yourself.

[tattybogle]

I can understand how scared you must be , so i hope some of the following will make you feel more hopeful:

~ It will have taken a long time to become as hypothyroid as you were in october, while you didn't realise what was going wrong , much of your extra weight will have slowly happened during that time because your metabolism slowed down due to low hormone levels ..

Once you are on the right dose of thyroid hormone replacement and your body is working properly again , it should gradually start to come off ... getting the dose right, and your body right again, can seem like it takes a really long time , but you will slowly get there.

~ many many people are fixed quite effectively by Levothyroxine, and once they are , they don't need to think much more about it. They go on to have happy lives, , and just take a pill every day ... and they are out having a life, so you won't meet many of them on here.

My Auntie was like that (had half her thyroid taken out aged 20 , then had to take Levo) . She went on to work in Kenya .. then Papua New Guinea .. then ran a small holding single handed and was still looking after sheep on a hill at the age of 79 ... So don't get freaked out by how many difficulties you read about on here .... we (on here ) are the minority who were 'tricky to fix' .. and most of us spent 20 yrs without the internet, so we didn't have anybody to ask for help until recently.

~ I know 'a year' is a long time at your age .. but give yourself a year to get your dose of thyroid hormone sorted , and to allow your body and your brain to get used to going at the right speed again.. and be kind to yourself in the meantime... you're quite unwell at the moment, but it's totally fixable.

~ And even if it does turn out that you are 'difficult to fix' .... you've already found your way to the right place for experienced help ... there are people here who know the ways to get you sorted.

There are even people on here who've previously been struggling with Levo for decades ,but since they came here and learned more and tried different things, they are now feeling better than they have for years and they are in their 70's.

~ There are also some blokes on here .. and even a few who are your age. So while you might be unusual ,and unlucky to get hypothyroidism as a young man , you're not alone .

Don't beat yourself up about stopping taking the tablets , it was perfectly logical ... somebody really should have explained the situation properly to you when they diagnosed you .

Best Wishes

and don't worry about keeping up on here .. we all understand you've just had a lot of information to take in all at once

[Lulu2607]

Hi. You are very young and your worries about your health are understandable. Thyroid problems are very common though and many many people take levothyroxine with few problems. As your thyroid isn't working well the levothyroxine tablets will give you what you need and slowly you will start to feel better. Even when your levels reach 'normal' your body will need time to recover. With time you will feel better and stronger and more able to tackle other issues eg weight, which are bothering you. As the thyroid gland directs metabolism and is your 'rev counter' of sorts you are bound to be under par at the moment. It will be sorted out once you get the right dose of meds for your thyroid, and then be patient, and not too hard on yourself until you feel better.

[Roadrunnergreg]

anxiety, get your zinc level checked out it needs to be about 3/4 of the range, odds are you might have high cortisol too if this is the case the haigh cortisol could be the cause of your low thyroid, adequate Zinc balances thyroid and cortisol levels. Or it did in my case i'm now off thyroid meds, but there's a lot of nutrient deficiencies outside of zinc common with hypothyroidism or any other illness really, its the best way to health by correcting nutrient deficiencies

[Dshadzz07]

Thank you everyone here for the support and posts to help me. From the information I’ve got I’m going to speak to my gp tomorrow get the blood tests done to see where I’m at with my thyroid levels, nutrients and vitamin levels. Then once I find the results I’ll see to have my levothyroxine restarted straight away. I’ll then see to get everything checked every 6-8 weeks to see how my levels change and hope to get everything better with as little struggle as possible (crossed finger) till then I’m going to focus my best on eating healthy exercise and losing weight as much as I can.

[DippyDame in reply to Dshadzz07]

Excellent decision...

The only way is up!

Please keep us posted.

[Lulu2607 in reply to Dshadzz07]

Great. Good luck. You'll soon feel better. 🙂

[Eddie83]

Please be specific about your test results. You mentioned "22", was that your TSH before you went on the 25mcg dose of levothyroxine? So you said it went to "normal" after using 25mcg, what exactly was the TSH you said is "normal"? In general, people here can understand your situation better, if you give them numerical test results for each test type, with normal range and units.

Each time you change dose of levothyroxine, you should dose at that level for 6 weeks and then have the test run again. That is because levo (same as T4) has a long half-life. Since everyone responds differently to oral thyroid hormones, treating thyroid is very much a trial-and-error procedure.

When the doc treats you with levo, you should be looking to get your TSH into the 0.3-3.0 (AACE) range, or into the 1.0-2.0 range (favored by "functional medicine" docs). If you get your TSH into these levels with levo, but still do not feel well, then I will remind you that there are co-existing conditions such as Hashimoto's autoimmunity & severe nutrient depletion, which can prevent treatment from being successful. The majority of docs do not know how to deal with co-existing conditions. Should you find yourself in that Catch-22, you will need to look into recommendations from "alternative" docs who understand this stuff. One of them is thyroidpharmacist.com. A lot of these alternative types also hang out on youtube.

[Margjeans]

I was first diagnosed 26 years ago,was falling asleep at my desk at work. Took the first pill ,50 mg. It was like a light bulb had been switched on . I do suffer a lot from anxiety but I’m still here and will be 86 in March. So you have along way to go yet . Good luck

[Teapot1966]

I’m sorry to hear about your anxiety it must be hard for you.

First things first tho - I’m assuming you’re in the U.K. ? If not the comments won’t be valid / same treatment.

If you are U.K. based ask for a prescription charges exemption form as you’re on levothyroxine for an under active thyroid - you’re entitled to free prescriptions

Also, you’re levels are now near normal / borderline as you’re taking (or were taking your meds) so it’ll stay in yr system for a while and show up as the correct level of treatment for now maybe. Keep taking the treatment - or your body will be like a car that has petrol /oil/coolant runs well - the moment you run out of one you’ve got an issue again !

It is a very low dose (as someone else mentioned) but a starting dose so they’ll test you until your levels begin to make a difference to your body, emotionally and physically . It’s a very common issue and a lot of people do have hypothyroidism (I too have it and have been since I was in my. Early 20s also)

If yr U.K. based please don’t get hung up in certain levels bring this that or the other - it’ll all be just worrying for now, concentrate on letting yr gp sort the doses correctly for you and you’ll start to feel less tired, note your digestion maybe is better or however it’s currently affecting you, should with any luck get better as you continue your treatment

The main thing is - do not stop taking yr meds. Stick with it. And sadly yes, you’re now on them for life you can’t stop taking them or yr symptoms will eventually come back

Good luck with it all x.

[Dshadzz07]

Thank you very much, yeah I do already have my exception card which is nice. Yeah it’s just they returned to normal and wasn’t really informed properly, and I assume things have changed since my last tests because of how I’m feeling. I’m hoping when I get them tested I can get a clear outlook on the right dose I should take with accordance to my GP.

[Catseyes235]

I’d suggest a basic book on thyroid issues. It’s extremely complex but the fact you assumed that once TSH was declared in normal range, you could stop medication, sounds like your doctor hasn’t explained that the meds may be needed to maintain that level and in fact increased to bring TSH lower. I saw your more recent post and couldn’t see that free T3 was tested? It’s a bit of a journey dealing with everything but at least yours was picked up when young but probably being a man has helped! Women are very often dismissed, as symptoms ...anxiety, tiredness, putting on weight, hair loss feeling cold etc are just women’s neurotic worries!

One thing to learn is patience and that ‘this too will pass’. Something I wish I’d known when there were no forums like this. No magic bullets I’m afraid ... but being good to yourself, eating healthily as possible and resting/sleeping when you need to will help. Also if you can share your feelings with friends and explain what part your thyroid plays in those feelings it helps. Good luck!

[Dshadzz07]

I’m just mainly upset on the toll it’s taken on my weight I’ve gained about 40kg in the last year. Part has been my fault but I just don’t see how it happened till I got my thyroid tested now I’m aiming to lose the weight and get to a healthy level and taking this medication will be a huge part in that.

[oldhand]

I was diagnosed at a very young age - like you. I thought I was doing fine and came off thyroxine when I went to another country but for many years had great trouble with fertility. Finally got pregnant but after got terrifying symptoms , huge swollen neck, deep voice, lion face , brain non functional, spaced out. New Doctor apologised said should have picked it up whilst I was pregnant before it got so advanced. PLEASE get back on your meds and follow it up for rest of your life. Life is great when your dose is right. I'm 75 now - full faculties came back enabling me to resume my mathematical career . Also be aware your family may be predisposed to thyroid disorders.

[Dshadzz07]

I was wondering if anyone here would recommend taking magnesium supplements to help or doesn’t it matter because I don’t think I get enough in my diet. Thank you

[Ruby1]

Hopefully you have restarted your medication after reading all the comments.

I just want to reassure you that an underactive thyroid is a very common condition and lots of people carry on perfectly normally as long as they keep taking their medication. Like many others I am fine taking my thyroxine with meals and not worrying about which brand of tablet, but we are the (lucky!) silent majority.

This forum is mostly frequented by people who have not found the standard levothyroxine has worked for them for various reasons, or they have GPs who are not very good/helpful.

I was only borderline when I started, but my GP started me on 50 micrograms because I had antibodies, and then increased it as necessary over the years.

I can see you've had some great advice from the admin and others already, but I just wanted to add my bit - please don't worry. My friend in her 60s has been taking medication since she was in her teens.