Levothyroxine 2 weeks in: I am now 2 weeks into... - Thyroid UK

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Levothyroxine 2 weeks in

Portia1974
Portia1974

I am now 2 weeks into 50mcg of Levo. First brand was Teva. After only 2 pills I felt terrible. Sick. Dizzy. Panicky. Nightmares. The effect was immediate. Went back to pharmacy who changed my tablets to MercuryPharma. They didn't have the effect on me that Teva did so have continued with them for the past 12 days.

Problem is I feel worse than I did before starting them. Wiped out. Sleeping in the day. Nausea. Loss of appetite. Headaches. Weird sensations on moving my eyes. Head feels like it's stuffed with cotton wool. Can't think straight. Weak. Dizzy.

Granted I am in the middle of a particularly nasty menses. My Iron was 4, ferritin 9 and HB 11 on commencing the Levo. 9am cortisol was low in range as was folate (bottom of range) and I was torn as to whether to start the Levo under those conditions or wait until I could address those (Haematology appt nxt week and am hoping to get an infusion agreed) to provide a better environment for the Levo to actually work. I also think I have low stomach acid which makes me wonder if I'm not actually getting the full 50mcg absorbed. And maybe my dose in real terms is much lower as a result?

I'm really not sure what to do. Continue with the Levo (it's going to be another month before I can accurately gauge my response through bloods) or discontinue the Levo for now and revisit at a later date (once other nutrients are addressed).

To complicate matters further I am due my b12 injection which may be contributing to fatigue and weakness.

My son's window blind blew in the wind and knocked a glass off his window ledge smashing glass everywhere. I just sat on the floor and cried and cried. At the prospect of having to clear it up when I barely have the energy to climb the stairs. And at the state of his room because I haven't had the energy to clean it in months. The sense of being a complete and utter failure and allowing my son to sleep in a room that dirty just hit me. And I just sat on the floor sobbing. I really don't know how much longer I can keep going tbh.

Anyway. Off to get dressed and try and do something with the candy floss that used to be my hair :(

On the upside...lost 5lbs. But then I'm barely eating so...ugh. Who knows.

10 Replies
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Try the Levo at bedtime. It tends to work better for people.

Very early days with it though and it sounds like there is lots unbalanced in the back ground.

Keep a diary of how you feel. Note if you feel ok at certain times in the day or really bad. Monitor your waking temp and a temp around lunchtime plus blood pressure if you have a monitor.

It is slow to develop a better metabolic rate. This is ultimately your aim. Thyroid replacement is just a part of the process (all be it a more important part).

Portia1974
Portia1974 in reply to marsaday

Try the Levo at bedtime. It tends to work better for people.

Yes I have read this. Unfortunately I'd struggle to be consistent with the timing of it at night. Sometimes I go to bed really early and sometimes really late and to compound things I am very much a late night snacker/grazer. So "2hrs after food" is an issue for me. My morning routine however is much more consistent. I just need to work around the "1 hour before coffee" rule there. Which I can just about manage.

Very early days with it though and it sounds like there is lots unbalanced in the back ground.

Yes. Iron is my biggest nemesis right now. Hoping to get an infusion agreed at a haematology appt next week.

Keep a diary of how you feel. Note if you feel ok at certain times in the day or really bad. Monitor your waking temp and a temp around lunchtime plus blood pressure if you have a monitor.

I have been monitoring my temperature funnily enough! (And my heart rate). We do have a blood pressure monitor somewhere but it's still buried in a box somewhere after the move. Plus...painful on my arms! Can't bear it at the moment. Nurse has stopped doing it temporarily as she noticed the pain on my face.

I didn't realise until reading an article that hypothyroidism used to be diagnosed purely on these kind of parameters. So I started looking a few days ago. As soon as I wake, take my temp and heart rate. So my waking temp has ranged from 35.9-36.2. Waking heart rate from 62-68. Lowest heart rate has been 59 highest 108. Temperature was notably higher yesterday (post Levo) range from 36.7 to 37. Something is occuring I think.

It is slow to develop a better metabolic rate. This is ultimately your aim. Thyroid replacement is just a part of the process (all be it a more important part).

Totally. Thank you lovely.

SlowDragon
SlowDragonAdministrator in reply to Portia1974

A Fitbit is good way of keeping record of resting heart rate and general activity level too

SlowDragon
SlowDragonAdministrator

Looking at your below range FT4 before you started, it would seem you need to stick at it. It's common to feel worse before we feel better.

As you already have B12 injections, is this for Pernicious Anaemia or just for low B12 (typical result of being hypothyroid)

Your ferritin is terrible. Did GP prescribe ferrous fumerate supplements? Or offer iron infusion?

Have you had folate and vitamin D tested?

Thyroid will need retesting after 6-8 weeks on 50mcg. Dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Most patients eventually need somewhere between 100mcg and 200mcg.

Starting dose turns your own thyroid production down, but it's not yet an adequate replacement dose. So it can be tough initially

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Looking at your below range FT4 before you started, it would seem you need to stick at it. It's common to feel worse before we feel better.

Yes. You're right of course. My knee jerk reaction is to hurl the pills at the wall but my rational self knows that would likely be throwing the baby out with the bathwater. I guess because I was torn about starting them in the first place (with my nutrient levels as they are) I am wracked with doubt as to whether I am doing the right thing or making myself worse. But I guess it's a bit like un-seizing an engine. The gears will grind a bit painfully before they get moving properly.

As you already have B12 injections, is this for Pernicious Anaemia or just for low B12 (typical result of being hypothyroid)

IFab tests have been negative twice. Parietal Cell antibodies negative once. So PA not looking likely (although I know those are not conclusive. Instinctively I don't feel it's autoimmune. (ANA is negative as have all other antibody tests been. Apart from a weak positive for smooth muscle antibodies but not got round to looking ito what that means exactly) But I do feel it's an absorption issue. Well I know it is. Initially had loading jabs with a level of 109. They then told me it was resolved (Oh how I know what crap they were talking now but I trusted them back then). Oral supplementation of B12 at 300% rda still saw my serum b12 decline to baseline levels again(from>1500 to 227 in less than 6 months if I recall). I feel it's low stomach acid. (either caused by long term undiagnosed hypothyroidism and/or destruction of my gut environment by a period of high dose IV antibiotics (I was hospitalised for a week in 2007 for cellulitis following a dirty mosquito bite) followed by hospitalisation in Turkey for gastroenteritis and a few years of persistent respiratory infections/pneumonia/bronchitis etc) So with hindsight, I think this has been going on on a sub clinical level for years. A tablespoon of lemon juice cleared heartburn/reflux for me on several occasions which makes me thing the heartburn is related to too little acid rather than too much. I unwittingly exasperated all of this during pregnancy (peptobismol/gaviscon and Rennie like they were sweets) and during childbirth and removal of wisdom teeth (gas & air/nitrous oxide)

Your ferritin is terrible. Did GP prescribe ferrous fumerate supplements? Or offer iron infusion?

I know it's dire. (impacting on B12 methylation and thyroid function and the efficacy of these Levo tablets). This is the thing I have been begging them for help with. Since 2010 they keep prescribing me ferrous fumerate and gluconate. I cannot tolerate them for more than 2 or 3 days at a time as my bowel becomes unbearably painful with them. As a consequence I have not been able to be on a high enough strength supplement, for a long enough period of time, to ever get my levels up. I have told numerous doctors this over the years and they offer only dietary and lifestyle advice. And because my Hb, until recently, has remained stubbornly JUST in range they take no notice. Until recently when I had a total meltdown (and I am now officially anaemic). I have also now educated myself on my own health, and when I started asking the Dr to then explain the cause of my anaemia, and the anomalies in my RDW and MCV and the guidelines for testing MMA, and Hcy, he visibly stuttered (as if he realised I could no longer be fobbed off) and agreed to a referral to haematology immediately. He couldn't get me out of there quick enough! That was in May. My Haematology appt is next week. And I am praying for an iron infusion. But I am prepared to have a stand up row if need be.

Have you had folate and vitamin D tested?

Folate is always baseline. This has never been raised by GPs as an area of concern. Of course I now know better! (and probably why I see so little benefit from my B12 injections) So this will form part of my plan/strategy once I have this haematology appointment out of the way. (I don't want anything skewing my results) Vit D was 22 nmol/L in 2015. GP prescribed Fultium 800iu. I now know this to be a pathetic dose. Sure enough, next test showed Vit D as 21nmol/L. Dexa showed ostepoenia. I then moved house and GP. New one put me on the recommended loading regimen and levels rose to 143nmol/L in 3 months. BUT he too then advised a maintenance dose of 800iu. I take drugs for epilepsy which screw with folate and vit d metabolism. So I now know that I should be taking at least 2-3 times a standard maintenance dose. So of course, levels plummeted again. Have managed to get them up to 75 nmol/L through self supplementation. But need to get those up to at least 150 nmol/L (or 200 nmol/L even) for me to be content.

Thyroid will need retesting after 6-8 weeks on 50mcg. Dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Most patients eventually need somewhere between 100mcg and 200mcg.

Yep. Up to speed on all that. It just seems such a long way off. A month away before I can realistically review and start analysing what my body is doing with the T4. And the prospect of feeling like this for another month is pretty depressing. I'm trying to "hold fast" and dig deep. But I feel daily like I am hanging onto a cliff edge by my fingertips. It's hard. But there is no option at the moment but to be patient and try and get through each day at a time.

Starting dose turns your own thyroid production down, but it's not yet an adequate replacement dose. So it can be tough initially.

Yes. I have read this but more in relation to a 25mcg dose

. So wasn't anticipating the 50mcg dose to be having the same effect. Just wasn't prepared for feeling worse.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Yep. This is the tip that was instrumental in finally uncovering my thyroid issues. For evermore I shall only ever do my blood tests this way. My GP has said she is happy for me to do my own medichecks tests (as she is not allowed to do FT3) and she will accept the results of those. Which is good, because it means I have a bit more control. I can do my test at 6am if I want to and not have to wait until I can get in to see the phlebotomist which will invariably be later in the morning than I can do myself. (plus....coffeeeeee!!)

Thank you so much for your help.

SlowDragon
SlowDragonAdministrator in reply to Portia1974

Great to see you understand exactly what's going on

Yes, low stomach acid due to being hypo and/or gluten intolerance due to leaky gut and/or gut biome affected by antibiotics seems to be at the root of most hypothyroidism, especially Hashimoto's

Post I put up a while ago on low stomach acid and low B12

healthunlocked.com/thyroidu...

Other interesting links on Low stomach acid

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Yes my own GP happy to accept my Medichecks tests. Finally getting some progress after 24 years on Levothyroxine, but only after lots help from this forum. Started on T3/T4 combo summer 2017, endoscopy confirmed gluten intolerance (not coeliac) in 2016, multiple vitamin deficiencies as result. heterozygous DIO2 gene variation confirmed 2017. More on my profile

Stick with it. It’s a long hard road I’m afraid. You really need those nutrients improving fast.

As for the messy, dirty room, how old is your son? If he’s of an age where he is capable of cleaning it himself explain to him that you are currently very unwell and unable to do what you used to do. You are not able to clean and tidy his room. He must muck in and do it himself.

My house is a terrible mess after 6 years of this. It’s dirty, untidy and full of clutter. But I don’t have the energy or mental capacity to deal with it so it is what it is. Hopefully one day I will be able to get it back to how it used to be. Until then, I turn a blind eye and rest. Nobody has died from cobweb asphyxiation yet.

Stick with it. It’s a long hard road I’m afraid.

Thank you. I know you're right. Some days it just gets on top of you.

You really need those nutrients improving fast.

Yes indeed. Iron in particular I think. Folate after that. I have an appointment at haematology on 20th with a view to an iron infusion and checking for low stomach acid. It's just so devastating to think of the years I have had wasted due to this. I never knew because of the classic "everything's come back normal" response to blood tests that have shown these issues for years, yet doctors do not act. April/May I went to the doctors begging for help and finally got the referral I should have had years ago. It took me 2 appointments and several phone calls in tears to get that far. The wait until this appointment has seemed so long. And I worry that even once I get there I will get dismissed and refused an infusion.

As for the messy, dirty room, how old is your son? If he’s of an age where he is capable of cleaning it himself explain to him that you are currently very unwell and unable to do what you used to do. You are not able to clean and tidy his room. He must muck in and do it himself.

He's 9. Overall he's pretty good (well trained). Laundry gets brought down and put in the laundry basket, plates and cups get put in the dishwasher, laundry gets put away. It doesn't help that we are currently renovating (old house in need of complete renovation) and the dust. Oh my word the dust! But yes. Maybe time for the next phase in his training.

My house is a terrible mess after 6 years of this. It’s dirty, untidy and full of clutter. But I don’t have the energy or mental capacity to deal with it so it is what it is. Hopefully one day I will be able to get it back to how it used to be. Until then, I turn a blind eye and rest. Nobody has died from cobweb asphyxiation yet.

You are of course right here too. I think it's just hard. I'm no longer working due to this and at least before I could say I was contributing to family life by keeping the home clean even if I wasn't contributing financially. In my current state (mental and physical), my inability to do so just feels like yet another failure on my part and another stick to beat myself with. Ah the guilt of a Catholic upbringing, lol!

Thanks lovely.

I understand how you feel entirely. I was in the middle of restoring our cottage. There’s no plaster on the inner hall and only half on the downstairs loo. The dining room needs a lot of plaster restorations and the horrible 1950’s fireplace needs to come out and something else done. The bedroom needs a lot of work on the floor and my husband’s office needs a lot of work on the plaster and floor. The inglenook in my office needs lining and a new hearth installing with a wood burner. And all sorts of jobs need doing outside and on the barn. I did all that. I am into sympathetic conservation and can use all traditional building materials and methods. But now I’m too exhausted to vacuum more than one room at a time by the time I get home from work. It’s a very sad state of affairs to live with. A villager was trying to get me to commit to ringing the bells on Armistice day this year. She is my book keeper and knows me well. She said “I know you have had a few health issues, but...”. Good God, she’s seen the deterioration first hand and she thinks it’s just a few issues and could to handle the tenor Bell for half an hour! No!

We just have to be easy on ourselves. I used to help everyone. Painted and decorated for them, cleaned houses after builders moved out etc. Did bits of gardening when they were unwel. No one has ever offered me any help whatsoever. That really has annoyed me and changed the way I think.

Ah Portia1974, I do hope you’ll feel better very soon.

I found taking magnesium citrate before bed to manage constipation when taking iron tablets. I hope this helps you.

All the best🤗

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