I don't usually share info on the internet, but as a lot of material out there is aimed at women or Americans (I mean no offence to either!) I thought I'd stay my experience so far. Diagnosis, what does it all mean, and treatment/first medications.
DIAGNOSIS
Late 2022 I saw a nurse as I was taking longer than usual to shake off "man-flu" a persisant cough. I think the cough went the day after I saw her! But at the same time I asked for diabetes and cholesterol tests simply because I was recently 50 and I thought that was a sensible screening exercise. This nurse must have seen something in my attitude or presentment and added on a thyroid test to my blood tests without telling me. When the results came through, the medics asked what Doctor ordered this test and why, so I really have to thank that nurse for thinking on her feet.
Anyway, first blood test.
21/12/2022 13:33 P - Thyrotropin 11 mU/l 0.3-4.2 Outlier: used for non-numeric responses
21/12/2022 13:54 P -Thyroxine, free 12.8 pmol/l 11-22 Normal value
led me to google (as I did no know I was having a thyroid test) to see "High TSH levels can indicate an underactive thyroid" = Hypothyroidism
this led me to call my parents, as I was vaguely aware my father took some kind of thyroid medication but I had no idea why and for what reason. Turned out his brother (my uncle) was tested 20 or 25 years ago when his doctor noticed he was wearing a sweater in summertime, that led my Dad to be tested (he wasn't aware of any symptoms).
This first blood test made me look at myself, or how I felt. In my life I was one of those "eat what you like and stay thin" blokes, plenty of energy and focus. Since the pandemic started my jeans went from 32 waist to 34, and since I had recently turned 50 I thought "this is what it feels like to be 50" = feeling like an old man. I tried walking more, cycling and swimming, but with low motivation and no fitness gain. And yet I have active mates the same age or could see people aged 70 in a better mood and with more get up and go than I was showing.
So armed with blood test result, and some family history I called the medics to request to speak to a GP who said lets to redo the test and add on antibodies test.
Repeat test
21/03/2023 15:49 P - Thyrotropin 11 mU/l 0.3-4.2 Outlier: used for non-numeric responses (TSH)
21/03/2023 15:49 P -Thyroxine, free 12.6 pmol/l 11-22 Normal value (T4)
28/03/2023 12:28 S -Thyroid peroxidase, antibodies
Statement 28.3.2023 / Laboratory, Doctor / Final statement
Thyroid peroxidase antibodies positive. Suitable for autoimmune thyroiditis or resulting hypothyroidism.
70 IU/ml <25 Outlier: used for non-numeric responses
TREATMENT
All appointments have been by phone, these are the notes I took:
Prescribes 50mg Medithyrox (levothyroxine) to be taken 1 per day. 30 minutes before food. Avoid foods with calcium in (milk, cheese etc) when first eating as it messes up the medicine intake.
Possible side effects: heart palpitations, anxiety, agitation, involuntary movements etc possibly in first few weeks. If so, then take medication every other day, for 1 to 2 weeks until symptoms go.
So started taking 50mg levothyroxine first thing after I wake up in the morning with a glass of water, I don't drink my decaf coffee until 30 mins later, I don't eat breakfast till about an hour after that.
The first week I felt like superman, fantastic. "20 years younger". It was almost like being on a stimulant, I felt and urge to run when walking or jump and and down with excitement. That first week I had tiny, super minor tingling on my inside left elbow maybe once or twice. I kept taking the 50mg daily. After a week any superman delusions faded :). My wife told me and close family that the "old me" seemed to be back and with hindsight I'd been a shadow of myself or different prior to this.
I then developed hip pain after walking for 10 mins, and after walking an hour almost had to limp due to the extreme pain. Seemed to be mid buttock, possibly piriformis where the buttock muscle crosses over the sciatic nerve. I've never had hip problems in my life before. Was I swimming, cycling, walking too much? I wasn't really going mad on those, could it be the medication or the levothyroxine? This meant I was in serious discomfort standing, and walking around the house the day after doing a 1 hour walk over flat streets once or twice a week. Eventually this faded away (rolling my the painful areas of my buttock/hips over a tennis ball and then a small yoga roller tub thing MAYBE helped to "massage" this away. I will never know. When I spoke to Doc at 2 months they had no idea as it wasn't listed on the sideffects info.
So horribly hip pain, faded after about 5 week.
2 month on medication blood test:
6/6/2023 3:47 PM P - Thyrotropin 6.5 mU/l 0.3-4.2 Outlier: used for non-numeric responses
6/6/2023 3:47 PM P -Thyroxine, free 15.8 pmol/l 11-22 Normal value
this result meant they raised my levothyroxine from 50m to 62.5mg, and I will rest in another 2 months.
Guess what? My hip pain kind of flared up again with the increase in meds, but only for a day or two and not for weeks. It might still be a coincidence. I have avoided doing 1 hour walks, but that is not a way I want to live, so will eventlually start walking longer distances.
How do I feel? Improved. Mentally better, concentration, energy levels improved, better mood. With the meds and the body still adapting, it feels a little bit like a leaky balloon, meaning the positive effects slowly diminish over the 2 months till the next test and adjust. I have noticed although I have the desire and energy to start tasks etc, my physical strength and endurance is currently rubbish. I don't know if the untreated hypothyroidism "wasted away" what little muscle mass I had or if the levothyroxine is making my muscles act weak or what the cause is. But after the summer holidays I will look at doing some strength building stretches/exercises etc.
On the hip pain. Who knows the cause or trigger. In response started taking omega-3 fish oil capsules and a multi-vitamin after lunch (so as to not impact my morning levothyroxine) in case its joint, not muscular or tendons, I guess I'll never know but will continue with the omega-3.
HOW LONG HAVE I HAD THIS?
Hypothyroidism creeps up on you without you noticing. About 3 or 4 years ago I started getting localised hair loss (Alopecia areata) on the back of my head. Doctor told me it was caused by autoimmune system attacking hair cells, it will probably go away. It comes and goes in severity, but it fairly constant. Could that be related? No idea.
Pandemic meant lifestyles changed a bit, probably con-incited with my getting hypothyroidism, but its very hard to pin down when I started to not be myself. I think I have it in a mild way that was slowly for some years, but only noticeable in the last 12 months. If you are a strong person mentally, you get up and do the right things you just dig a bit deeper to make them happen. But here is the thing, its only after being diagnosed did I think, oh yes, something was off.
Along the google highway, I collected a list of "typical" symptoms, filtering out those that were more common in women as they didn't apply to me being a man. I'll include them here if anyone needs them:
Hypothyroidism is a common condition where the thyroid doesn’t create and release enough thyroid hormone into your bloodstream. This makes your metabolism slow down. Also called underactive thyroid, hypothyroidism can make you feel tired, gain weight and be unable to tolerate cold temperatures.
People with thyroid problems are also more prone to developing alopecia, which is an autoimmune condition that causes hair to fall out in patches.
It is common for individuals with untreated hypothyroidism to experience:
anxiety, depression, apathy, or general lack of interest or feelings of indifference, impaired memory function, less attentiveness and concentration, low moods, slower thinking and speech, weakness, joint or muscle pain, weight gain.
the best explainer I found was here:
pennmedicine.org/for-patien...
WHAT HAVE I LEARNT ON MY JOURNEY SO FAR?
I'd rather not have it, but I am happier it is now diagnosed and being treated. I don't like the idea of taking a tablet every morning for the rest of my life, but I will. I see it like brushing teeth = its good for you. The tablets do kind of change how your stomach behaves / poo but it seems the body does get used to that and it improves.
The medication is helping, but until the months have passed and the body adapts and the levels settle down to an equilibrium I won't know how I truly feel until then. Its a bit like being a leaky car tyre, every 2 months the new prescription tops you up then the leak reduces that, but evenly the leak will disappear.
I've also learnt it seems I will likely have to stretch more, do so some kind of "manly yoga" or physically see how I can best look after myself so that my body doesn't act like its 70 when my mind is 50 (well really a 30 year mind :). I'm a bloke not an old man! I suppose this is me saying we are all different and have to find our best paths to well.
THERE IS LIGHT AT THE END OF THE TUNNEL
I read this earlier today from one of the admins, on another post by someone else. It is what prompted me write this LONG, over long post. Hat off to anyone who has read this far.
The admin had written:
"50mcgs is really just a starter dose and you should be retested 6-8 weeks after you have been on that dose. Labs will be reviewed and dose increased in 12.5mcg or 25mcg steps untill your TSH is at or just under 1. Most people feel well then.
Many people do feel worse on a low dose like 50mcgs as its not enough to replace what your own thyroid was putting out. Things get better as you get more optimally replaced."
This is the sort of common sense explanation and clarification of a typical treatment path for people just starting to take levothyroxine that to me was the missing bit of info. From it I can understand the logical to the size of medication increases and how a person might typically feel.
Good luck one and all.
A project to redefine treatment of hypothyroidism
Did anyone experience side effects with Levothyroxine for hypothyroidism in the first 3 months?
