Taking stock of the situation (10 days after starting on Levothyroxine for hypothyroidism)

[NortherlyRose]

Hi everyone,

This is my second post.

I started taking 50mcg Levothyroxine 10 days ago.

Not sure of the optimal interval for blood tests and increases in dosage. I’ve read 4 weeks, 6-8 weeks, and 3 months in different places!

Last Saturday I went into work but couldn’t cope and nearly had a meltdown so my manager suggested taking the rest of the week off.

I’m really glad I did.

I’ve been taking things easy, eating healthily, and doing some gentle exercise. I feel a lot better for it but I am still extremely tired and falling asleep during the day.

My symptoms seem quite severe given my test results (posted below). This may be because I also have arthritis, I’m autistic, I have hearing loss, and I’m getting old (65) - the cumulative impact of all of these seems significant and some of the challenges overlap.

I’ve booked a call with my GP practice on Monday to ask for a fit note. Part of me thinks that I should try to soldier on at work, but another part of me thinks that I should pay attention to how I feel and give myself time to adjust and regain energy.

Just wondered what other people did about work after they started treatment and were waiting to get their levels up? I know it’s not always possible to take time off even if we feel the need to. I am fortunate that I can. Being so close to state pension age means I am less worried about the consequences than I would have been earlier in my career.

Here are my test results:

Thyroid function test

Serum TSH level 9.37 mu/L [0.35-5.5]

Serum free T4 level 13 pmol/L [9.0-23.0]

Serum thyroid peroxidase antibody concentration >1300 Ku/L [0.0-59.0]

Vitamin D

Serum total 25 - hydroxy vitamin D level 27 nmol/L [50.0-99999.0]

Vitamin D levels of 25 - 50 nmol/L.

B12 / folate level

Serum vitamin B12 level 383 ng/L [190-910.0]

Serum folate level 5.7ng/mt [3.3-99999.0]

Ferritin

Serum ferritin level 80.1 ug/L [30.0-400.0]

Full blood count

Haemoglobin concentration 145 g/L [115-165]

MCV 95.1 fL [80.00-100]

Mean cell haemoglobin level 32.2 Pg [27.0-32.0]

[SlowDragon Administrator]

It typically takes 2-4 weeks after starting on levothyroxine to notice some small improvements

Then don’t be surprised if as you get nearer 6-8 weeks retest if some symptoms start to reappear, this just means your body is ready for the next increase in levothyroxine up to 75mcg

Then retest again in a further 2-3 months

Meanwhile work on improving your low vitamin levels as detailed in previous post

healthunlocked.com/thyroidu...

Going back to work ……See how you feel

Could you do reduced hours and/or work from home at the moment

You may see hearing loss improvement…..this is often a hypo symptom

[NortherlyRose in reply to SlowDragon]

Thank you.

Reduced hours is a good idea. I can’t work from home as it is a public facing role. My employer is going to give me a template to cover the support I need relating to all of my conditions. That way it will be clearer to my colleagues what the issues are and why I need accommodations at the moment.

I bought a whole lot of Vitamin D tablets when my GP advised me to. Thinking of using the mouth spray with vitamin K instead. So much going on health wise that I haven’t had a chance to ask my GP about a loading dose of Vitamin D. I’m a bit nervous about doing this myself in case I get it wrong!

[SlowDragon Administrator in reply to NortherlyRose]

a loading dose is a total of 300,000iu vitamin D over 6-9 weeks

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

With the vitamin D mouth spray …..start at 3 sprays per day after breakfast

You shouldn’t notice any side effects

After a week or so increase to 5 sprays per day

Retest vitamin D after 8-9 weeks

[FallingInReverse]

6-8 weeks on a consistent dose.

In early days like you (ie, starter dose), 6 weeks is good as you know you’re heading for an increase.

As one gets closer to full replacement dose, 8 weeks or even longer is suggested (like when I got near to 87.5-100+ (and I’m also on t3) I would wait 8-9 or 10 weeks.)

This guidance is based on the 7 day half life of Levothyroxine. If you took one pill today, 7 days later 50% of that would be in your blood. So day by day over time the total hormone in your blood is both dropping off and building up with each new pill you take a day, and it takes 6/8 weeks to be stable - neither dropping nor increasing.

That’s when we test.

As for work - I got diagnosed at the busiest time of my career. I have not been able to take time off. But I can work from home.

I have told no one. I have worked 3x harder/longer than before to keep it all up! I do enjoy my work, but also I do need to worry about keeping my job/a job for the next 15-20 years 😳 , and so I’ve had to prioritize work and toss some other things out - like I see my friends less and I have less downtime, instead I work at a more relaxed pace but for more time each day.

It took me about a year (more or less) on proper titration to clear the brain fog. Early days I would fall asleep for a nap every afternoon. The fatigue made me dysfunctional. Other times I had such trouble thinking I would stare at my laptop for hours and get like one thing done.

Thank God I am able to work remote. I’m not sure how I would have done if I was required to go to an office every day.

It does get better, but it can take months/a year or so.

[thyroid-warrior in reply to FallingInReverse]

I resonate with you. I’ve also been taking things slow with less friends/family commitments and more time taking care of health and work time as I struggle with being producing for the first half of the day. Been feeling much better since start of February (4 months since I first increased my own dosage with “normal test results” without the doctor’s recommendations.) but it took some time to experiment with the dosage myself. And decided to get my own T3 as I realised last month my conversion wasn’t optimal.

[Obsdian]

I wish I understood hypothyroidism better when I was first diagnosed and thus would have felt enabled to take the time off I actually needed.

So, I am all for advocating for yourself if you need reduced hours (reasonable adjustment) or time off while you adjust. I never felt like it was ok. Hope you know it's ok to take time for your health.

[NortherlyRose in reply to Obsdian]

Thank you so much. I’ve asked my GP for a fit note until 1 March. At that point I will have been on Levothyroxine for 28 days. I hope I will have begun to feel a bit better by then.

My sleep is already disrupted and erratic because of my arthritis. Last night I slept badly until 7am, but then fell back into a deep sleep at 7.30am and slept through to 10.15am. That is one of the benefits of being off work at the moment. I can sleep and take naps whenever I feel I need to.

For the last few weeks at work I was battling with tiredness, especially on my longest working day (9.15am to 7.15pm). When I go back I’ll ask to do reduced hours to begin with so I can work a shorter shift that day. I’m going to ask for a 15 minute morning break too so I can have some breakfast.

It’s harder to ask for accommodations because hypothyroidism is an invisible disability. I’ve already experienced this with arthritis and autism. I know some people think it’s risky to disclose disabilities to an employer but a bigger risk for me is not getting accommodations and ending up burning out and leaving work that way.

I am staggering towards the finish line of my career. I am due to get my state pension in 11 months time. My main aim is to be as healthy as I can by the time I get there so I can enjoy my retirement. This diagnosis has changed everything. Thanks to this forum I have realised that a healthy, low-stress lifestyle is just as important as taking the medication.

[Star13]

I don’t need to repeat what others have said about your thyroid so I’ll ignore that but vitamins…. They do need attention.

Your GP should have put you on a Vit D loading dose so I would certainly approach them on that.

Your GP will probably scoff at giving you anything for your B12 but a good BComplex like Ingennus BComplex would be good. Your Folate is scrapping along the bottom and almost deficient just as mine was so I started the Ingennus Methylfolate which brought my folate up pretty quickly and helped with the fatigue.

As for work. You need to be careful at your age because if they are looking to downsize or save costs anywhere, they should not but they do look for people your age close to retirement. I’d be more inclined to see your GP and get another sick note for a week and then see if the GP will support phased return or some sort of reasonable adjustments to your contract either with reduced hours or longer breaks or even a change in role that allows for some home working. I would not rush into filling out forms with your managers quite yet. Get yourself a bit more stable on your meds first and then see where you are and if that means taking a little bit more time off work first, that’s probably better.

[FallingInReverse in reply to Star13]

Good call out on that D!

NortherlyRose many on this forum have used this calculator for bringing Vit D up:

grassrootshealth.net/projec...

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).

[NortherlyRose in reply to Star13]

Thank you. I know disclosure of health issues and disabilities is risky especially as we’ll probably be going into another reorganisation soon. Fortunately this sickness absence will be recorded as disability related which gives me some protection. I had intended to continue working beyond state pension age but I will wait and see how I feel at the time (it’s 11 months away).

I want to be absolutely sure I can cope before returning to work. Because it’s a public facing role it’s impossible to know what each shift will bring and I am on my own some of the time. I might ask to be transferred to a bigger branch where I am not so exposed.

[Star13 in reply to NortherlyRose]

Yes absolutely make sure any disability absence isn’t clocked against your companies sickness policy. Also remember that even if you do get something that starts off not being disability related but then goes on to be affected by your disabilities, you then can make it a disability absence.

The thing you have to watch out for is that if you have too much time off that they don’t get you for capacity to do your role which is legal providing they have gone down the offering the reasonable adjustments road first. So by all means have another week off but then engage with them about reduced hours or phased return until you can decide about what you want on a more permanent basis and if they are prepared to play ball on meeting you on those requirements.

[FallingInReverse]

My symptoms seem quite severe given my test results (posted below).

Actually, your symptoms seem very in line with your results … tsh very high, low t4 which one would guess is paired with a low FT3 (but you need to start getting an ft3 result), your b12 and folate alone are enough to cause symptoms in some. D too low, as noted above.

You’re working on your thyroid hormones… starter dose “set it and forget it” for 6 week. Great first and necessary step. Then you can roll through your vitamin optimizations step by step as well.

Northerly, did you already get input in your previous posts on your vitamins , or is this the first time you’re sharing the above results. What date was the above blood test done?

[NortherlyRose in reply to FallingInReverse]

I already had vitamin advice when I first posted and shared my test results. Blood tests were taken on 21 & 27 January and I started taking Levothyroxine on 28 Jan. I just ordered a Vit D & K mouth spray, I’ll use this instead of the one a day Vit D tablets I bought before. Thanks for the reminder about optimising other vitamins. Next time I get blood tests done I’ll request F3 as well and see what my GP says. Is there a rationale I can give them as to why I need this? I know it has to do with conversion. Many thanks!

[FallingInReverse in reply to NortherlyRose]

I’m in the US, so not the one who can advise on how to get what you need from the NHS! Only will say that the majority of those in this forum advise to just test private like Medichecks.

I always found some comfort in the need to wait 6-8 weeks between dose titration, and then introducing vitamin changes also one by one and waiting a couple weeks before adding/changing the next.

Yes we feel crappy during the process. But we really do only have one decision to make at a time, and the “change one thing at a time” rule allows us to know what may cause any new improvement or new symptom. If you change too many things at a time you will never know what caused what result.

[NortherlyRose in reply to FallingInReverse]

Thank you. It feels much more manageable to do this bit by bit. Far less overwhelming.

A couple of weeks ago I had no idea what the thyroid did. This has been quite a journey!

[Regenallotment Ambassador]

oh bless you, welcome to the forum.

I remember this well. Hang on in there you will slowly start to feel better. Following the advice here has transformed my life. But it did take 9-12 months to really start to feel the benefits, things really turned around in year 2 as I learned more about my autoimmune diet and how to balance my energy levels.

Yep, if you can get signed off then you will recover faster. Be kind to yourself and keep expectations low and slow. I soldiered on and now wish I hadn’t. I wasn’t doing a good job at the time and had been at the top of my game before diagnosis. That’s hard to deal with.

Sending you my best wishes for a speedy return to feeling like you again 🙏

[NortherlyRose in reply to Regenallotment]

Thank you so much. I’m gradually getting used to the idea that it will probably take months rather than weeks for me to feel properly well.

Every tiny bit of progress is going to feel so much better than what was happening before. I was fighting so hard to avoid giving in to exhaustion and wore myself out in the process.

The scary thing is that if I hadn’t had blood tests done because of my arthritis I still wouldn’t have a clue about my thyroid problem.

[Regenallotment Ambassador in reply to NortherlyRose]

I hear you, it was a similar story for me, Polish female locum GP picked up my desperate request for a consult during lockdown and when I explained HRT wasn’t working and the mess I was in she sent me for blood tests and diagnosed me over the phone.

This is just the start though, read up, learn your own situation, it’s very individual, that’s how we end up here 🤣 at least we are in good company and understand the challenges 🤗

[NortherlyRose in reply to Regenallotment]

It’s so helpful being here because other people ask questions I don’t even know I need to ask!

We’re all uniquely different and yet there are common themes. It is so helpful to be among people who understand just how much this tiny butterfly shaped gland can affect our lives!