Took it upon myself to increase my dosage - wha... - Thyroid UK

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Took it upon myself to increase my dosage - what next?

JonnyA profile image

OK, you don't need to tell me that this is something you shouldn't do with any prescription medication, however the situation needs some context. I don't want to ramble on so I'll try to keep this as succinct as possible.

I'm a 36 year old man diagnosed with subclinical hypothyroidism, but the symptoms have been absolutely crippling. Symptom-wise, we're talking all of the classics, but the most debilitating have been horrendous fatigue, complete loss of mental clarity and concentration, significant weight gain (now almost 3 stone - after I had worked hard to get myself into the shape of my life - 6 pack and everything), a constant sense of anxiety with occasional panic attacks in certain situations, and a brutal depression that has left me close, frighteningly close, to taking my own life. I owe my wife for rescuing me in that instance, but the last three or four years have taken a massive toll on my marriage.

I am conscious that you could attribute many of these symptoms to other afflictions, be it mental or physical, however the way things played out from 2017 onwards, beginning with cold intolerance and white fingers, to struggling of weight management, to the almost complete implosion of my life. I have always believed that there was a physiological reason behind what I've been grappling with, and I've never been more certain than in this moment.

I'd add to all this that things like the depression and anxiety make no rational sense whatsoever. I have a beautiful wife and two beautiful children, aged 7 and 5. My career has never been better; I am in a very senior professional role which in normal times affords me the opportunity to travel the world, and I'm as financially secure as I have ever been. I worked my up from nothing, grafted my way up with no eduction to speak of, to find myself transcending people with Oxbridge degrees within my organisation. I'm trying to write this without sounding crass - that is not my intention. It's just context - I was a fit, healthy, happy, successful man with literally more than I had ever wished for, and then I started to feel cold, tired, ill, forgetful, anxious, sick, down, depressed, panicked, suicidal - just about in that order. It started slowly, and then hit me like a sledge hammer. It's the loneliest and scariest place I've ever been.

Anyway, I've been searching for answers for some time. I've seen various endocrinologists, mostly to little avail, trialled testosterone treatment (also to no avail), and finally found someone willing to treat what was considered subclinical rather than full-blown hypothyroidism.

My T3, in particular was low, and after several months of relatively small doses of levo (35mcg at its highest point), I was prescribed an additional 7.5mcg per day of liothironine.

At the outset, my T3 was 4.3 [3.0 - 6.8], and the levo I'd been taking for months had barely changed this. After a couple of weeks of adding the liothyronine, things had improved for the very first time to 5.38, whilst my TSH was the healthiest on record at 2.51.

Technically progress, but I still felt pretty dreadful. And I had an issue on the horizon. In some respects, the pandemic has helped my in terms of my work. I've been working exclusively from home since March 2020, which has allowed me the extra couple of hours sleep per day I wouldn't have been getting, as well as the ability to get a few moments rest between meetings if I'm feeling burned out or suffered a panic attack - although I've become very adept at hiding what's going on inside me, it doesn't make it any less an unpleasant experience for me.

Last week though I was summoned to three days of meetings in London. My CEO was over from the States, and it would essentially be three days of back-to-back meetings, early starts and late nights with the kind of corporate dinners and drinks that were common place before Covid struck.

I can't lie - I was dreading it. I didn't know how I could get through that. No way I would have the energy, the mental clarity to concentrate for such long periods, or the ability to hide any panic attacks which would inevitably knock on my door in the kinds of high pressure scenarios which have previously been triggers for me.

To make matters worse, my doctor is currently unavailable due to her own illness, so I decided to take matters into my own hands a couple of weeks before. I increased my levo to 50mcg per day and my liothyonine to 15mcg per day - double my prescribed dosage. I know this was potentially irresponsible, but the alternative was that I either didn't end up going and put my career in jeopardy or went and found myself asleep after three hours of meetings (with the same end product).

I've been keeping a close eye on any symptoms and potential side effects from over-dosage, and the only effects seemed to be positive. I also kept monitoring my bloods, and my latest FT3 was 5.96 with a further reduced TSH of 1.76.

I have to say, I've felt as well in this last week or so as I have in at least two years. Not perfect, but much improved without a shadow of a doubt. I was able to get through my week of meetings feeling something like myself, albeit a little heavier and a little more tired, but at times it felt like the past few years hadn't even happened. It was a great feeling, and it's a long time, genuinely, since I've experienced positive emotion.

My gut feel is that, having taken it upon myself to increase my dosage, that I'm closing in on where I need to be. However, I now have a different problem.

Of course, I don't have sufficient medication to maintain this dosage in the long-term, so I have to come clean to my doctor - someone I respect so much as I feel like she is the only person who has ever taken me seriously and tried to help. I don't want to damage that professional relationship; she simply wasn't available at the time when I needed to make a call, but I recognise I have tried to play doctors here and that may not go down well.

This really was, honestly, an act of absolute desperation on my part. The last roll of the dice with the walls closing in. If things had gone horribly for me, I'm not sure where that would have left me or what might have followed. At the back of my mind was an itching concern that I was about to be around train and tube stations for the first time in nearly two years, and I didn't want to be there having just ruined my career.

But I did what I did, and technically I shouldn't have. How would you explain that away?

Really sorry this has been so long-winded - I just needed to get this off my chest and think about next steps. I feel like I'm closer than ever to ending the nightmare that has enveloped my life, but at the same time I'm risking alienating the only medical professional who has really helped me over the course of several years.

Thoughts appreciated.

25 Replies
SlowDragon profile image
SlowDragonAdministrator

As per previous post healthunlocked.com/thyroidu...

Standard STARTER DOSE levothyroxine is 50mcg

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

Always testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Testing too soon is waste of time and totally unhelpful

Problem adding T3 too soon is TSH usually drops dramatically as soon as T3 is added…..completely shutting your own thyroid output down ….leaving you rapidly feeling worse

Dose levothyroxine should be increased slowly upwards in 25mcg steps until on a dose that is somewhere around 1.6mcg per kilo per day minimum

Approx how much do you weigh in kilo?

Having added T3 it’s essential to test TSH, Ft4 and Ft3 after6-8 weeks minimum on constant unchanging dose and brand levothyroxine and T3

Are you currently taking T3 as 3 x 5mcg doses split at roughly equal 8 hours intervals

Obviously you need to get higher doses prescribed ASAP or your going to run out

When were vitamin D, folate, ferritin and B12 last tested

Having been left ludicrously under medicated vitamin levels likely extremely low

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine doesn’t “top up “ failing thyroid it replaces it……and adding T3 will exacerbate this

guidelines when on JUST 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 patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

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).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

OK, you don't need to tell me that this is something you shouldn't do with any prescription medication

I wouldn't dream of telling you any such thing, not where thyroid is concerned. Because what you're taking, although prescription only in the UK, is not 'medication' in the normal sense of the word. It is hormone. And whilst I know that many people - including most doctors - are terrified of hormones, those of us that take them know that they have don't nothing to earn their bad reputation. Many of us self-treat, myself included. And, it is perfectly safe if you respect the rules:

* Hormones - all hormones - should be started low (although not as low as your doctor started you!) and increased slowly.

* For levo (T4) that means, for someone over 10 and under 60, starting on 50 mcg and increasing by 25 mcg every six weeks until the FT4 is in the top third of the range, and the TSH around 1.

* For T3, it means starting on 1/4 tablet (i.e. 5 mcg or 6.25 mcg) and increasing by 1/4 tablet every two weeks until you get to one whole tablet, holding for six weeks and retesting, and revising how you feel.

I'm not quite sure how long you have been on your doses of T4 and T3, I did skim through your last post but it didn't give me a clue. But, you did increase your T3 by a bit too much.

* When increasing dose, either increase T3 OR T4, not both together. You don't even know how well you convert because you were never on enough T4 to bring your TSH down to 1. So, depending on how well you convert, you could now have taken your FT3 over the top of the range. But, if you feel well, don't worry too much about it. You'll do better next time. :)

So, what do you do now? Well, you eirther 'fess up to your GP and get her to sanctify the increases by writing a new prescription. Or, you go the whole hog and take over the complete control of your treatment, buying your own hormone on-line, and doing private tests. Or, you might be able to find some middle way between the two extremes.

But, the important thing is, you stop beating yourself up about it! Your doctor was grossly under-medicating you, and doesn't really know what she's doing, anyway. You probably know more about thyroid than her by now. You were feeling ill, you needed to feel well urgently - in which case it's usually better to just increase the T3, because levo takes a long time to give results. You did what you had to do. End of.

Now, what I suggest is that you stay on your new dose for a total of six weeks, and then get retested. If you've gone too far, and your FT3 is over-range and/or you feel over-medicated, you can always reduce your dose again, slightly, no harm done. Or, by then, you might find you're ready for another increase. In which case, make sure you get it! And make sure, if you continue to be treated by your GP, that she doesn't dose you on the TSH. Because that just will not work. It will not get you back to good health. You need to dose - she needs to dose - by the FT3, the active hormone. :)

m7-cola profile image
m7-cola in reply to greygoose

I totally agree with this advice from GG.

Best of luck with your doctor but be prepared to seek alternative ways to source the medication you need.

jgelliss profile image
jgelliss in reply to greygoose

Spot On greygoose.

greygoose profile image
greygoose in reply to jgelliss

Thank you, jgeliss. :)

DippyDame profile image
DippyDame in reply to greygoose

The best advice greygoose....as ever!

greygoose profile image
greygoose in reply to DippyDame

Thank you, DippyDame. :)

Yes, as Greygoose said, I’d just fess up and see where it goes. Don’t change your meds again now. Stay on your current dose and let your body adjust for at least 6 weeks and see how you feel before changing. T3 might be fast acting but the body can be slow to respond completely. Your health is more important than your relationship with this GP so if she doesn’t understand then you may have to find another. Hopefully she’ll listen though - I’m glad you found relief before all the work demands kicked in. Completely understand - horrible to say but the lockdown helped me cope when I was at my worst. Working from home all the time took the pressure off a lot.

SlowDragon profile image
SlowDragonAdministrator

From a practical point you must get ongoing supply levothyroxine and T3 secured long before you need to renew prescription

Which brand of levothyroxine are you currently taking

Have you always been on this brand

Does GP prescribe T3.

Which brand T3 are you currently taking

Your going to need increased prescription

Order a full private thyroid and vitamin testing kit ready to test after 6-8 weeks on current dose levothyroxine and T3

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

Medichecks Thyroid plus antibodies and vitamins

Often on offer if order on a Thursday

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Even if you don’t normally split the T3, on day before blood test split T3 into 3 doses, waking, early afternoon and last dose between 9-11pm

Do blood test 9am latest the following morning

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

Come back with new post once you get results

What vitamin supplements are you currently taking, if any

Make sure you stop any vitamin supplements that contain biotin a week before all blood tests as biotin can falsely affect test results

Meanwhile Email Thyroid UK for list of recommended thyroid specialist endocrinologists...in case your GP is unhelpful

tukadmin@thyroiduk.org

Don't beat yourself up about it; you did what you needed to do to survive. You have no apologies to make.

Trouble is, those without thyroid disease have no idea what it's like, how utterly debilitating it can be. Most people around me, including the GP's I saw thought I was 'just a bit tired' and couldn't understand why I couldn't just get on with things. 🤷🏻‍♀️

Best of luck moving forward. I hope your GP is receptive. :)

Welcome to self medicating and getting your life back.

Follow the rules, go low and slow, and make sure your ferritin, folate, B12 and Vitamin D are maintained at optimal levels as no thyroid hormone works well until your core strength is strong and solid.

Respect needs to be earnt and I spent too long believing my doctor knew best :

We have all been there :

With a book or two and this amazing forum I'm now my own best advocate and 3 + years into taking full spectrum thyroid hormone, looking after myself and have my life back.

Try and get your T4 and T3 75% up through the range and see what happens. My TSH needs to be below 1.0 even 0.6 for me to feel anything like well. I sympathise with the depression and anxiety. I’ve been feeling a bit out of sorts recently. Don’t forget to check all your vitamins (esp D) and minerals. Lack of vit D can mimic thyroid symptoms and cause low mood and lets face it we’ve had a summer low in solar rays! Try not to analyse the anxiety/depression and just put it down to your condition. It should pass once your treatment reaches therapeutic levels. Just roll with it for now! 50% of thyroid patients are on anti-depressants at any one time apparently so you’re not alone!

Be patient and know your limits. Adjust doses and test six weeks later. Go private if NHS aren’t helping. I pay £100 a few times a year and it has help more than anything else.

Fess up to your GP and explain exactly how you have in your post. She will understand

Hello JonnyA, as one who urges people not to go against doctors advice I can see why you did, and, from your message I can see that you have really suffered terribly over the last few years. Having worked within the medical profession I can tell you that generally doctors appreciate honesty and understand when, in a situation as bad as yours, we make decisions we wouldn't normally. How about going to your doctor as soon as you can, telling her what you've done and why, even perhaps giving her most of your post to read how you felt and that increasing the meds was a temporary measure to get through the 3 days? If you then tell him/her how very much better you have been perhaps he/she will be happy to increase your prescription. Best of luck, I hope this is the start of you being back to your old self.

Hi, I think you did the right thing for your health and should continue to do so. Your previous dose was low and based on your symptoms too low for you. It could be argued that your concerns should be redirected to your GP for under medicating you.

Hi, I'll start by saying I've constantly increased my dose and then told the Endo next time I saw them as better for them to be seeing me with evidence of improvement to symptoms - and still not over ranges on t3 and t4 - so they can't say I don't need the meds and take them away. I say, 'well, I'm taking a scientific approach and experimenting on myself as of course we are all individuals and just being 'in range' is no indicator of how any individual actually feels.'

I'm not sure why you added in t3 instead of just working to increase levo dosage till your symptoms abated and your t4 and t3 were higher in range and the tsh around 1 or under - did you feel you weren't converting well? Could you go back to just having levo? NICE guidelines suggest 1.6mcg x kilo of bodyweight. You don't mention your t4 levels. Now we know that t3 is the active hormone but many get theirs high enough from just taking t4.

I did not feel well till my t3 was over 6, so you could see further improvements to how you're feeling (whether by taking an increase in t3 or in t4). T4 is just more available from Docs that's why I would've started there - but I do buy a little extra t3 online and its not extortionate.

See above advice re vitamins. I took a decent multi-Bs, D3+k2, magnesium etc for a good while till my T3 got higher then I seemed not to need them but have recently begun them again. (I was always low in magnesium and folate till I got my t3 high.)

If I were you, before you see your doc, I'd go for the Medichecks Advanced Thyroid Function test (or equivalent in other services) as it will give you a good picture of where you are re Thyroid and vitamins then you can post here for further advice. Take the test first thing in the am, 24 hours after last levo and 8-12 hours after last liothyronine.

Juts for some encouragement, I've got loads more energy than I've had for years and haven't had a migraine for two months, having previously had them 1-2 times a month. I can go out in the evenings etc - I still can't do much in the way of exercise though as that totally depletes my energy resources, as does eating anything with too much calcium in it.

Good luck. Oh, I was sub clinical too - never much over 5.

vocalEK profile image
vocalEK in reply to JAmanda

I have to take my exercise in small chunks. I bought a pulse-oximeter. This is a small device into which you insert your finger. It then reads out your blood oxygen level (expressed as a percentage), and your pulse rate. I work with a personal trainer. After I complete a set of exercises, I use the little machine and don't go on to the next set until my O2 (oxygen) level is above 90 and my pulse rate is below 105 bpm. This is what works for me. The "above 90" is pretty standard for everyone, but your targeted heart rate is personal. cdc.gov/physicalactivity/ba...

See my response in your previous post!

I self medicate successfully with a very large dose of T3, against medical advice so certainly won't criticise your decision!

Many of us successfully do this.

I would suggest you should initially have increased your levo....I can't see why you need T3 at this point but, for now, no matter

You are suffering from typical symptoms of undermedication and your GP needs to get her head round this. Doctors don't always know best and if that is the best advice you have been offered it's high time for a change

greygoose, on the other hand, knows her stuff and you would be wise to follow her excellent advice... many of us have benefited greatly from it.

Glad you made it through the meetings etc....you listened to your body and it told you what to do!

The mantra of an old medic friend was, "Listen to your body". Wise advice.

You can do this....the only thing you have to lose is a group of miserable symptoms that are dragging you down. Including the dreadful anxiety!

Keep us posted and members will help you take the thyroid journey ahead.

Oh! And feel free to rant...it's therapeutic!!

Some thoughts. There is nothing wrong with using your own initiative and intelligence to try and solve a problem in any other sphere of life , so is there really any difference here ?

.... don't let the whole 'doctor/ authority' thing make you feel there is anything wrong with it when dealing with YOUR health.

Yes, treat them with respect if they deserve it , and be honest with them , just as you would expect anyone to treat you. ..... But don't forget this 'medicine' malarky is supposed to be a partnership to improve YOUR health. Your thoughts /wishes/ intelligence are worthy of respect too.

And anyway it's not like you went totally 'off piste' and used a ridiculously high dose ... you simply tried increasing it to what seemed a more reasonable level based on what you have learned from other people's doses / blood results .

Deal with the GP like you'd deal with business.. you tried something off your own bat to get a vital job accomplished.. because the current solution was failing , and doing nothing about it would have been be catastrophic.

What you did wasn't reckless .. it was simply using your brain.

Now GP is back , discuss together with GP the 'interesting improvements' you found on a higher dose and decide together what to do about it, by looking at some bloods done on this dose.

Don't be surprised /disappointed if you have a rough time again in a few weeks with symptoms coming back a bit / or crashing.. .. that would (unfortunately ) be quite normal..... things do take a long while to stabilise after a dose increase.. especially if you get carried away with feeling like you used to and do more activity than you have done for months.

And of course it is possible that you've increased by too much and hormone levels build up slowly to being 'a little too much'.... which would also mean you felt less good after a few weeks . but if that 's the case you'd just reduce slightly .. no harm done.

Wow, you’ve really been through the wringer.As much as you like your doctor, she hasn’t done what she should have, which is, treat your symptoms. She just looked at your labs. You’ve had to resort to being your own doctor. I would actually be very angry that she’s let you suffer this long. I increase my dose whenever I start to feel hypo, and just tell them I had to increase my dose. What can they say if you feel better? You know your body better than she does. I would get another doc if she kicks up a fuss, it’s your life.

The occurrence of Raynaud's phenomenon in hypothyroidism without thyroiditis and its prompt disappearance with thyroid replacement therapy demonstrate that decreased thyroid function per se is a cause of this vasospastic syndrome. Raynaud's phenomenon may be an early clue to the diagnosis of hypothyroidism.

That's the white finger phenomenon. So you are undertreated.

If your doctor is as approachable as you say, you can let her know what you did, why you did it, and what happened. I don't see why a reasonable doctor wouldn't respect what you've done and why. Just the fact that she prescribed T3 is a good sign. It seems she's not as knowledgable about hypothyroidism as she could be.

Possibly providing her with the information that others have linked to may help. I think doctors have so much stuff to deal with they can't be perfect at everything. Plus, as you mentioned, she has her own health challenges. As you know, when we don't feel well our job performance suffers.

Last year I was very fatigued and got bad migraines with vomiting. Rang the docs, was offered a tablet for the migraines, no other questions, no blood tests. I did my research and decided the tablets were a sticking plaster and not the cause. Upped my levo a tiny bit - within 2 weeks, vomiting stopped!

Wrote to my own GP and explained, she requested bloods - she upped my dose again after talking to me.

My son’s wedding this Aug, knew I would struggle to be there all afternoon, let alone the evening too - took an extra 2.5mcg of T3 - made it to 9pm (woohoo 🥳)

I don’t blame you at all for what you have done, you needed to function.

As the others have said, now tell your GP. Hopefully she will understand and do blood tests and support the increase.

Maybe keep a diary of results and how you feel so you can look back at a later date if needed.

Good luck - may you find and keep your energy levels ☺️

Thank you everyone for your advice, knowledge and kind words. It really is appreciated.

Peace and love to you all. x

tattybogle profile image
tattybogle in reply to JonnyA

Glad we could help :)

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