Just existing: I am on 150mg of levothyroxine... - Thyroid UK

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Just existing

EmmaGiggles85
EmmaGiggles85

I am on 150mg of levothyroxine, bloods in Dec 2020 came back fine... so why do I feel in constant pain? I've been reading up about fibromyalgia and I think I may have that too... I am feeling so down, no motivation and my physical and mental health is at an all time low. I need to lose weight but I am too sore and tired to do anything. I feel so alone despite having people round me... my only comfort is food and sleep... although, I have insomnia and have to fight napping in the day. I just feel like I am existing. And its miserable.

73 Replies

Hi. I read your post. Sorry you’re really struggling. I understand what you mean when u say that you have friends but no one gets it so you feel alone. Eating makes us feel good and food is nice and can act as a comfort when everything else feels horrible. You can always post here. You will find support here. You are not alone.

Thank you so much! I just need to find the strength to break some habits and fight through the bad days. It is just feeling too much of a task at the moment... my partner is u derstanding to a degree. But says I wouldn't feel as bad if it could just lose weight. I know my symptoms will ease with the weight off but easier said than done. He doesn't get how I'm in constart pain before any exercise, then a flare up afterwards too. So the thought of knowing how much ill be hurting just puts me off most days x

Do not attempt any hard cardio exercise at this point. If you have insufficient T3 you will make yourself very ill and end up with Chronic Fatigue.

What you are experiencing is Post Exertional Malaise. Exercise requires more T3 and puts stress on already struggling adrenals to produce cortisol. You will just use up DHEA.

Do what you can - walks for example at a not too fast pace - but attempting to 'lose weight' through working out will eventually have you in a bad place, possibly in bed or on the sofa for hours and if you keep on, days and even weeks.

I don't want to alarm you but from what you say and my own experience, you are on a pathway to complete adrenal crash

If you can I really recommend doing the Medichecks tests quoted by SlowDragon for £29. It's vital we see your T3 levels.

xx

Be kind to yourself. It is very hard mentally to accept a body that isn’t what you would like. Very hard. I tell myself it isn’t forever but it is for now. Do the best you can and I’m sure you are. Eat as clean as you can. I’d say walk but I would tell myself to f@@k off when it is running that you love. I think you need your drugs looked at but I’m no expert. I tend to be more of a psychological support. Your boyfriend loves you. He’s sticking by you. Might not account for a lot on a bad day. The men try to understand but it’s just as frustrating for them to watch us the loves of their lives go through this. If u ever just want a chat you can private message me. You’re not alone but this is a tough disease. You are stronger than you know. Might not feel like it today but tomorrow will come and today will be yesterday. All my love and hugs to you.

I was nine stone when I got sick. I felt as crap then as I do now, several stone heavier. Weight can make things easier and it’s healthier obviously but it’s not the be all and end all and it has made no difference to my symptoms.

shaws
shawsAdministrator in reply to EmmaGiggles85

"bloods fine" doesn't really mean much.

Hypo means low or slow so you have low thyroid hormones (T4 and T3) in your body that slows it down and it is these hormones that run our whole metabolism. If our body (or doctor) doesn't give us an optimum dose of levothyroxine (T4) which should convert to T3, our body cannot function and weight may be gained. Our heart and brain have the most T3 receptor cells.

Hypo means low so our body has insufficient thyroid hormones that run our whole metabolism from head to toe.

Many members do gain weight and it is not their fault but having hypothyroidism. Our body's hormones are too low to enable our body to function as normal. Some people need a T4/T3 combination to raise their metabolism but many doctors will no longer prescribe T3.

stopthethyroidmadness.com/h...

The aim is a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the ranges. Unfortunately few doctors will request a FT4 and FT3 and I doubt they actually know what their function is.

Unexplained weight gain is due to insufficient T3 in our bodies. Levothyroxine (T4) is supposed to convert to T3 and it does on many hypo patients but it doesn't work for all of them. A combination of T3/T4 might help but if you're in the UK they've stopped prescribing T3 due to the extortionate cost to the NHS.

No partner can understand what our body is undergoing as it is not providing optimum thyroid hormones so that our body, from head to toe, can function as normal i.e hypo = slow. So our body has slowed until we get an optimum thyroid hormone replacement that suits us (i.e. we begin to feel well again) and our body. There used to be options that the doctor could prescribe but the 'experts' have withdrawn these because they became 'too expensive'. Or they believe that 'one size fits all' i.e. that levothyroxine works for everyone. Not for me at all - I remained unwell and symptomatic.

stopthethyroidmadness.com/h...

Hidden
Hidden

Do you have a copy of the bloods you had in December? Members can help much more specifically if you do!

You're legally entitled to a copy of your results. Call your surgery and ask for a print out.

I would hazard a guess that your T3 is still too low for you to feel well.

EmmaGiggles85
EmmaGiggles85 in reply to Hidden

I have never been shown my results to be honest... I have had this diagnoses 10 years and the doctor has never really explained hypothyroidism to me properly. I've done all the research myself, so all the T3 and T4 etc are just numbers to me lol. But I am having a full blood test done again this week so I will ask for the results to be sent to me with that too. Thanks so much x

shaws
shawsAdministrator in reply to EmmaGiggles85

The medical professionals, I believe, have no knowledge whatsoever about a problematic thyroid gland, whereas in the past, before blood tests, we were diagnosed upon our clinical symptoms alone. Nowadays few doctors know any clinical symptoms at all and all the reliance is upon a blood test (if taken - as not one took mine). If you click on my name you can read my experience with the medical professionals.

Please ask for ALL your thyroid blood results - you are legally entitled to them without giving a reason - although it's usually easiest to say "for my records" or to register for on-line access. That way you will see how you have progressed (or not) over the years and exactly what has (or has not) been tested.

Try and get FULL testing next time - ie TSH, free T4, free T3, thyroid antibodies (unless you know these have been tested and come back high) and key nutrients - ferritin, folate, vit D and B12. I've had some success with the GP by saying that these are the tests recommended by Thyroid UK.

I cannot lose weight unless free T4 and free T3 are nice and high - and your levo works best when your nutrients are good, so it's important you know where these are and supplement as necessary.

It's a real bore that doctors now so little about thyroid issues (and nothing at all about nutrition, as this isn't covered in their training) - so it's up to US to get it right - and forums like this are just soooo helpful.

Good luck x

The only thing my then GP said to me was " this little white pill (levo/T4) will make you well again". That was utter rubbish....it eventually floored me. I needed T3 not levo (T4)

This forum succeeded where, for many years, medics failed....that's why there are over 100,000 members here who have been similarly failed. It is a scandal of monumental proportions

I'll be on my soap box again if I say more!!!!

.

shaws
shawsAdministrator in reply to EmmaGiggles85

If you are having a blood test for thyroid hormones, it always has to be the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards. This method helps keep the TSH at its highest as that seems to be all the doctor takes notice of.

SlowDragon
SlowDragonAdministrator

Welcome to the forum

How long have you been on levothyroxine and at that dose

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

When were vitamin levels last tested

Please add latest results

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Just testing TSH and Ft4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Wow... thats more advice in one message than I've ever had from a doctor! I didn't even know most of that... I've only ever had one type of levothyroxine and I have been on this dose for around 3 years. I have never been told to use vitamin supplements, so I've just got some centrum as I've heard they are good for an all round vitamin boost?! So I've never had my vitamin level tested either... thank you so much! I will look into this ASAP x

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

We never recommend taking multivitamins....only any good for the worried well. Most contain iodine and other things we don’t want

At best a waste of money, but can actually be causing issues

Test first, and only supplement what we need.....usually fairly high dose vitamin D, magnesium, vitamin B complex.....sometimes iron

But TEST FIRST

Read posts on here you’ll soon get up to speed

First step is to get hold of tests done by GP

See what’s been tested......probably only TSH (groan)

Get FULL thyroid and vitamins tested privately.....making sure to do test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Only do test early Monday or Tuesday morning and then post back via 24 hour tracked postal service

Stop any supplements that contain iron or biotin before testing

ALWAYS stop any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

Which brand of levothyroxine are you currently taking

SeasideSusie
SeasideSusieAdministrator in reply to EmmaGiggles85

Hi EmmaGiggles85

SlowDragon has given you lots of useful information so no point in me repeating it but I will just pick up on this (because vitamins are my "thing" and I detest these rip off multi's)

I've just got some centrum as I've heard they are good for an all round vitamin boost?!

Simply put, they're rubbish, a category suitable for most multi's.

Multi's contain too little of anything to help low levels or deficiencies, they usually contain the cheapest and least absorbable of active ingredients, and they also tend to contain things we need to be tested for and only supplement if found to be deficient.

I don't know which particular Centrum supplement you take so let's just look at the Centrum Women one.

B12 - if you are deficient or low in this then 3mcg is not going to help, you'd need nearer 1000mcg to start with.

Vit D - this needs testing first and if level is low then dose is based on that level. This supplements includes 5mcg (200iu) Vit D and that's not even enough for a winter maintenance dose for someone with a good level already, most people would need 1000iu for a maintenance dose, maybe even more.

Calcium, Iron, Iodine - these absolutely must be tested before supplementing. Iodine used to be used to treat hypERthyroidism before the current treatment of radioactive iodine, so taking an iodine supplement can make hypOthyroidism worse. Iron should only be taken if tested and found to have iron deficiency or anaemia and then should be prescribed and levels monitored regularly.

Zinc, Copper - these are often high in one and low in the other with us Hypos and should be balanced so really need testing first.

Looking at the forms of active ingredients:

B12 - They use the Cyanocobalamin form of B12 and the recommended form is Methylcobalamin.

Folic Acid - methylfolate is the best form (folic acid is synthetic and needs to be converted by the body).

Magnesium Oxide - cheap and very poorly absorbed. Used as a laxative. Much better forms are available with specific roles and it's best to choose the form most suitable for your needs.

Selenium - they use the selenate form, both selenate and selenite forms should be avoided, best forms are selenium l-selenomethionine or yeast bound selenium.

Best advice is to put this in the dustbin where it belongs, get specific vitamin testing as per SlowDragon's advice, come back with results/ranges and we can make suggestions as to what supplements you may need and the appropriate dose.

SlowDragon
SlowDragonAdministrator in reply to SeasideSusie

👍😀

Hello! Welcome to the forum.

We need to see what the definition of 'fine' is. If you can, ask the receptionist to do a printout of your results and pick them up then post them here. As already stated, you are legally entitled to them. Also worth seeing if you have raised antibodies due to Hashimotos.

Were these bloods taken by your doctor? The NHS usually doesn't test the hormone T3, only thyroid stimulating hormone (TSH) which is a pituitary hormone and T4 only and not T3 (your body needs to convert T4 into T3). T3 is the hormone your body thrives on. Every cell in your body has receptors for T3. Levothyroxine is monotherapy - T4 only, which your body must convert into enough T3 in enough time.

So your doctor can say your results look fine, and based on the limited information he/she has (and the limited interpretation) he/she would be correct but in actual fact you can be under medicated.

It could be that you have enough Levothyroxine, but your body is not able to convert that T4 to T3 efficiently.

This is major and will be causing your pain, your low mood etc., leading to a diagnosis of 'idiopathic pain with accompanying non-specific symptoms,' or if you're more fortunate 'Central Nervous System Sensitisation' both code for - Fibromyalgia (the latter at least is more accurate because that is what is happening to an extent, but the true cause is not simply having extra cytokines running around in your system)

In reality the body has a shortfall in energy producing fuel - T3 at the cellular level. Unless something is manipulated to improve uptake of T3 it does not get better from here.

I too have a fibromyalgia diagnosis and have explored alternatives. Based on things I've tried and the effect on my symptoms, I believe the inefficient conversion of T4 - T3 to be responsible for the pain etc.

Read up on Hypothyroidism and the symptoms. Simple logic dictates if symptoms of Hypothyroidism are XYZ and I am suffering XYZ then the disease causing XYZ and not a disease causing ABC is responsible.

So much information here! Wow... again. As the reponse above, you have given me more advice than I've ever had from any doctor! So thank you! What you've said makes total sense to be honest. I am going to ring my doctor today and ask for the results, also I'll ask for the results of the blood test I am scheduled to have this week too! I'm a bit overwhelmed with all of this new information... I'm actually seeing a light at the end of the tunnel! Thanks again x

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

What time is this blood test booked for

Do you normally take your levothyroxine waking or bedtime

Request that Ft4 and Ft3 are included in the test, plus vitamin D, folate, ferritin and B12

As per NHS guidelines for anyone on levothyroxine with ongoing symptoms

NHS England Liothyronine guidelines July 2019

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Do you know if the cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?

If yes, also request that GP do coeliac blood test

I have never been told about a specific time to have a blood test but I have never been in the morning before taking my thyroxine... so thats great! (With a hint of Sarcasm)!I usually take it in the morning, but only recently found out I should take it an hour before food.

They never told me much about the cause of it... just told me I had it (I didn't know what it was as I'd never heard of it before) and when she told me I'd be on medication forever I cried. Then she said "what you crying for?! You're asthmatic and you take the inhaler everyday so what's the difference". Lovely! X

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

That just about sums up thyroid care

It’s also absolutely ESSENTIAL to always get same brand of levothyroxine

And many people don’t get on with/can’t tolerate Teva brand

I will find out what type of levo I'm taking asap! I have also commented down below with my test results from a few months back x

shaws
shawsAdministrator in reply to EmmaGiggles85

Also ensure the 'professionals' also give you the ranges of the results. Labs differ in their ranges and it makes it easier to make comments about your results.

SlowDragon
SlowDragonAdministrator

Fibromyalgia is frequently inadequately treated hypothyroidism, due either to inadequate dose levothyroxine, low vitamins and poor conversion of Ft4 to Ft3

Getting dose levothyroxine fine tuned, all four vitamins optimal and often trialing strictly gluten free diet if cause of hypothyroidism is autoimmune thyroid disease

But important to do test coeliac disease BEFORE going strictly gluten free

Slow Dragon has great advice

🥰

You are not alone here EmmaGiggles85Your words echo mine of a few years ago when I could barely function.

Among other diagnoses I was given was fibromyalgia which you mention ....it can be a horrible condition but is a syndrome not a disease and presents with many of the symptoms of hypothyroidism! I'm now sure that I never had fibromyalgia......just wrongly diagnosed and wrongly medicated thyroid disease!

I guess your GP only tested TSH and maybe FT4 which I'm afraid tell only a fraction of the story. Can you please post any results you have including the reference ranges, this will give members something to begin looking for a resolution?

You say your labs are "fine" to medics that usually means they sit within the reference range...."fine" isn't what you are aiming for, instead you need optimal results for you and this clearly isn't the case! More on that after you obtain more comprehensive labs.

I suspect you are suffering from low T3 which is the active thyroid hormone essential to almost every cell in the body and required in a constant and adequate supply.

There are several reasons why low T3 occurs but initially we need to look at our conversion status.

T4 is the storage hormone which is produced by the thyroid gland when prompted by the pituitary gland by the hormone TSH. T4 needs to be converted in the body into T3 by the removal of an atom of iodine. (T4 to T3) If this conversion is poor your FT3 level will be low and you can feel very unwell.

Poor conversion will show in lab results as high FT4 and low FT3.

Medics consider TSH to be the gold standard test....it isn't, as researchers have proved.

TSH is a pituitary hormone, not a thyroid hormone, it reflects the level of thyroid hormone in the body.....not how much there is in the blood

High TSH = low hormone; low RSH = high hormone

First, you need to have a full thyroid function test - TSH, FT4, FT3, folate, ferritin, vit D, vit B12 and antibodies. From these results we can evaluate thyroid function.

Many of us have private tests in order to accurately evaluate our thyroid function

See info on private testing here....

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

Once we have those labs members can advise how to proceed.

You need to be aware that unfortunately there is no quick cure ( think paracetamol/ headache) it takes time to resolve hypothyroidism.

As I said there are other possibilities so you needn't fall at the first hurdle but, one step at a time.

Here, we are all in this thyroid mess together, some members are very experienced and knowledgeable, more so than many medics. Thanks to some of them I discovered why my health had been declining for decades...if interested you can read about my thyroid journey in my profile. So, feel free to ask about anything concerning you.

I'm sure others will pop in with lots of good advice and with that you will be able to restore your health.

We're all here for you

Best...

DD

Feeling overwhelmed with all of your amazing advice... I am going to contact my GP now to try and get results etc and then I will be back to reply to everyone. Feeling supported perhaps for the first time in 10 years... thank you so much everyone x😘x

Your journey to recovery has now started....well done and good luck!

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

We have all been where you currently are.....now you have found this amazing forum, you will be able to make progress

Currently NHS understanding and treatment of hypothyroidism is woefully inadequate

But you can make progress

You can read regular members profiles on their thyroid journeys

shaws
shawsAdministrator in reply to EmmaGiggles85

The last time you had blood tests taken for thyroid hormones, if you didn't have blood draw at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and test, request another blood test so that the results will be more accurate.

EmmaGiggles85
EmmaGiggles85 in reply to shaws

I am definitely going to do this! Thanks

I agree, I was told I had fibromyalgia as well, but in the end it was too much T4 and not enough T3. I went from 100mcg T4 to 75mcg T4 and 12mcg T3. All of my pain disappeared. 12mcg T3 ended up to be too much so we've been playing with that. Was on 6mcg for 2 years, but my levels went a little high towards the end of 2020 so I've moved to 4mcg T3 and will likely settle out at 5mcg. I get the T3 compounded into a slow release formula as the straight up Cytomel caused horrible symptoms of overmedication and then crashing. Slow release is perfect. Fibromyalgia is a cop out term for not treating thyroid disease properly.

Not adding anything beyond what others have said, but just my personal experience. I agree re not doing heavy exercise or dieting, could be the last thing your body needs right now. So contrary to all advice around you - “eat less, move more” is the standard approach, but it really doesn’t sound to me like that is what you need. Before I knew about thyroid issues I did HIIT and extreme low carb diet, and all that effort resulted in a measly half stone weight loss, not even worth it! I’d have a coffee ready in my car for after class to drink before I drove home as exhausted - I realise now that was terrible to push so hard and I probably stressed out my body. Going GF and DF and only walking I easily lost a bit of weight without effort, while eating a lot more also. And then adding in thyroxine easily have lost some more. I’m having a little blip just now and think I need a dose increase, so not saying I have mastered this or anything. But knowing that some things are outwith my control gives me a bit of patience and kindness towards myself, I need more drugs and vitamins. The things I can control are making sure I eat good food full of nutrients and good fats, taking supplements and optimising vitamins, and light exercise if and when I can eg walking and easy yoga. Very best of luck.

Hidden
Hidden

Another voice in the choir singing 'dont push yourself to do hard exercise'.

Exercise depletes T3 and if you're already low on T3 exercise won't make you feel better.

I also believed that if I forced myself out for a run, it would do me good and I'd feel better.

I ran a half marathon, while I was still breastfeeding, and with undiagnosed hypothyroidism and undiagnosed asthma. My poor body was just ruined. 12 weeks later I had an almost total breakdown. Physically I was ruined and my mental health has never been worse.

It was still another 6 months before I was started on levo.

More than a year later, I'm only just starting to feel like I might recover.

When you're optimally dosed your energy will return. Think about exercise then. :)

Thanks again for your great comments, its made me be a little less hard on myself for not having energy to exercise like I need to. I need to accept its not just because I'm lazy! Well... I've spent ALL day trying to get the last test results so I could share with you all... however, apparently the ones I took 2 months ago are nowhere to be found! I only have the ones I did in July 2020. I was shocked to see a measly couple of sentences and only a serum free T4 level and a serum TSH level. No T3 just like many of you have guessed. Now I really have no idea what these levels mean lol, however, my T4 says 13.9 pmol/L and TSH is 13 mU/L. Does this make any sense to anyone? Xx

Hidden
Hidden in reply to EmmaGiggles85

Do they have ranges?

I.e. TSH is usually something like (0.2-4.6)

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is UNDER 2

Ft4 should be in top third of range

So when the test was done in July and result was showing EXTREMELY under medicated....

Was dose increased by 25mcg after this test?

No they literally just told me my blood results were fine... tbh I just accepted feeling like this as my GP is useless. When I was first diagnosed 10yrs ago I was nearly hospitalised. I was on the medication for 4 days and ha ing sever heart palpitations, sickness, dizziness, migraines, IBS and shacking. I went to the GP and he questioned me as to why I had such a high dose (as if I decided on the dose myself)! Turns out that the other doctor had given me 100mg straight off the bat! So no wonder I felt ill!

I thought this may be better, i have taken a screenshot! Please let me know if this isnt allowed to be posted xx

Lotika
Lotika in reply to EmmaGiggles85

I’m struggling slightly with that on an iPad, but it looks like your TSH is 13 and your T4 is 13.9 on a range of 10-20. In which case, you are seriously under medicated and no wonder you feel rough! Again probably due to the iPad, I can’t see the date. If that was the Dec test, then, if I am being kind to your GP, s/he needs a trip to the opticians! If I’m being hmm, not at all surprised by what I’ve seen in the last few months, then your GP is one of the ones who is <cough> a bit rubbish with thyroid. I am not any kind of expert around here, but if I read what I saw of that screenshot correctly, you need an increase in levothyroxine and you are nowhere close to your optimal dose.

Actually, I’m editing to tag to SlowDragon so that she will see it and confirm - or otherwise!

EmmaGiggles85
EmmaGiggles85 in reply to Lotika

Hi, yes those are correct! It isn't my Dec levels because apparently they can't be found... Great! These were the ones before that. In July 2020. What should my levels be then? I'm curious! It is genuinely THE worst I've felt since my diagnosis tbh... aches just holding up my phone! X

Lotika
Lotika in reply to EmmaGiggles85

Ah - that explains it! You should feel better (most do) when TSH is close to the bottom end of the lab range and T4 towards the top... but as others have said, if you get there and you don’t feel better, then you need to test T3. It’s the T3 which makes you feel well, so at that point it will be a question of how well your body is converting levo (T4) into T3.

Lotika
Lotika in reply to EmmaGiggles85

PS: totally understand re the aches, brain fog, depression... under-treated, this is truly a terrible illness. But I do believe we can all be optimally treated. I’m just not convinced we will all get there within the NHS, sadly. Some of us will and some of us won’t. Gosh, that sound terribly depressing, doesn’t it? Those who can’t get the NHS to sort it can get it sorted here, so all is not lost!

EmmaGiggles85
EmmaGiggles85 in reply to Lotika

I think we're allowed a little negativity! Thanks for your support! This group does feel like a light at the end of the tunnel! X

Hidden
Hidden in reply to EmmaGiggles85

Most on levo need TSH 1 or under and T4 and T3 in the top quarter of their ranges. Your T4 is just 38% through the range so your T3 is likely to be lower still.

EmmaGiggles85
EmmaGiggles85 in reply to Hidden

Wow... thats crazy... I'm gob smacked tbh

Was your levothyroxine increased after these tests??

No, its been the same for 3 years approximately x

Hidden
Hidden in reply to EmmaGiggles85

So your TSH came back at thirteen and you didn't get an increase?

The gods wept.

EmmaGiggles85
EmmaGiggles85 in reply to Hidden

🤔😒😢

Hidden
Hidden in reply to EmmaGiggles85

I'm all kinds of indignant on your behalf.

Genuinely astounded your GP thinks 13 was ok.

EmmaGiggles85
EmmaGiggles85 in reply to Hidden

Yeah... I'm shocked after talking to you all...

Hidden
Hidden in reply to EmmaGiggles85

The good thing is that you know now! :) Now you can go and make a nuisance of yourself at the surgery.

Insist on print outs of all your thyroid tests, and insist on an immediate increase in your dose.

Ask for full thyroid testing, including T3. If they refuse there are loads of companies your can go through for fingerprick blood tests and do your own testing.

I would insist on a different GP as the one you have knows naff all about thyroid. I would also consider making a complaint about them .

I’d be jumping up and down(gently)as you are woefully under medicated. Your tsh is very high which shows you need more levo. If you are getting private test to show t3 it would be helpful to you as it may be low with tsh that high. Demand GP tests you and does t3 as they’ve been less than helpful by ignoring your July tests and leaving you unwell.

Xx

I do have some bloods to be done this week. Once I have the results I will share them on here. However. I genuinely think I am going to have to get them done privately too! I thought my GP was useless... now I KNOW he is!

Lotika
Lotika in reply to Hay2016

Yup, I’m with Hay2016, get a GP on the phone and ask for an increase. If they won’t, then they need to explain why on earth a TSH of 13 is healthy and if they even try to do anything except prescribe and apologise then the words “formal complaint” come next. All politely, obvs. But i am so angry on your behalf...

And, cough, this would be a really good moment to ask for full vitamin, antibody and T3 testing. You have them by the proverbials...

Lotika
Lotika in reply to EmmaGiggles85

OMG. I assumed they’d increased it. Shocking.

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

So tomorrow you want an URGENT appointment with any GP

Ask why dose levothyroxine was not increased in July when TSH was 13

Testing results LOST in Dec - not informed

INSIST on thyroid retesting this week.

Make sure it’s an early morning appointment and don’t take levothyroxine before test

Also INSIST that they test vitamin D, folate, ferritin and B12 too

And coeliac blood test

I will do! God... it feels like a weight has been lifted already. Thank you x

SlowDragon
SlowDragonAdministrator in reply to EmmaGiggles85

Come back with new post once you have seen GP

Let us know how you got on

TSH (Thyroid Stimulating Hormone) of 13..... in July ? I really hope that after that blood test they increased your dose of Levothyroxine.?

You must have felt dreadful.

TSH is the message from the pituitary to the thyroid to ask for more thyroid hormones to be produced... the higher the number the louder it's asking.

In someone with hypothyroidism it is the doctors job to listen to this message and increase the dose because the thyroid can no longer respond well enough.

Perhaps if you see this chart of the % of healthy people with various TSH levels , you and your partner might understand how 'not ok ' you were then.

healthunlocked.com/thyroidu...

As you will see , most healthy people have it around 1 or 2, the graph only goes up to 6 and virtually no one has anything over 4........

also ...I'm adding another voice to the 'don't beat yourself up for being 'lazy', and don't overdo it with exercise ' choir. Trust yourself . You know the difference between being lazy and everything being a massive struggle. When you're being lazy , once you start and keep going you gradually feel better, but when you're struggling , you start and always end up feeling worse.

We all understand how hard it is when every day is like walking through treacle.

Be kind to yourself.

We cant tell anything about the fT4 level (free T4) without the lab range that comes with the test , but given how high the TSH was it's probably low in range.

T4 is the hormone produced by your thyroid gland, and Levothyroxine is synthetic T4.

Think of T4 and T3 on one end of a see-saw , and TSH on the other end.

When T4 is too low TSH goes high , and when T4 is higher TSH goes lower.

The thyroid produces mostly T4 and some T3.

T4 is inactive , and is turned into T3 in the body . T3 is what makes nearly all of your cells work including your brain, so when you are hypothyroid, your cells simply don't have the capacity to work properly, so you feel naff.

I just cried reading this... I think everyone's comments throughout the day have just come to me all at once! I finally feel understood and supported! Thanks so much for the link to the graph... wow... how eye opening! Its made me so mad and upset that they said 13 was fine. They just fobbed me off and I'm the one who's suffered ever since! I can't thanks you and all the others enough for all of this! Thank you!

I've just read that they didn't increase levo with TSH 13 !, we see some crap treatment on here but honestly that's appalling. i think someone needs to check this GP's eyesight ......in fact, maybe they should check for a pulse.

It's official , YOU ARE NOT LAZY.

And if you got fat it's your doctors fault not yours.

Don't worry, I have the confidence and all this knowledge now that you have all given me to go the the GP with! Can't blame the GP for all the weight gain unfortunately haha x

Lotika
Lotika in reply to EmmaGiggles85

You probably can, actually!

EmmaGiggles85
EmmaGiggles85 in reply to Lotika

🤣🤣🤣

Lotika
Lotika in reply to EmmaGiggles85

I was somewhere similar recently in that I discovered my T3 had been low for years and I had been beating myself up for being lazy and nobody would test T3... well, it’s in my profile, but I wanted to say that the anger is something I am learning to process... slowly!

EmmaGiggles85
EmmaGiggles85 in reply to Lotika

Yes I read your profile a little while ago and was honestly so angry and upset for you! What an ordeal! What a shambles x

You’re not alone. I know exactly how you feel. You’ll always find support here.

I’ve scoffed four magnums this afternoon lol.

This made me giggle!! X

Hi everyone,

Well... I have just had a phone call from my Dr regarding my blood test results. There was no T3 on there which I guessed already, but I am going to get a separate test done from the links you have all provided asap. I'm in shock and really upset... he told me that my TSH level is now 21, I now have diabetes. I am low in folic acid, low in bit D, low iron stores and need an ultra sound as my liver enzymes are elevated. I just broke down... I didn't ask everything I needed to ask because I was devastated to be honest... hes going to call me later on and I will pick up a copy of my results too. Feeling worse than ever. X

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