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Early 50s male, healthy till hypothyroidism my first few months experience of treatment

BobMcBob profile image
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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.

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BobMcBob
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28 Replies
tattybogle profile image
tattybogle

Hi BobMcBob,

I like your leaky balloon / tyre analogy ..

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

Your GP has been extremely cautious only increasing by 12.5mcg to 62.5mcg (over cautious i'd say) 12.5mcg adjustments are more appropriate when you are getting somewhere near the right dose . but it is best to get to more or less the right dose as soon as the body can tolerate the increase.. It would be more usual to have increased to 75mcg when TSH is still as high as 6 .

if GP continues to be over cautious , you may need this in future :

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

because it is not good enough to just get TSH 'anywhere in range' .many people will need it closer to 1 this shoe size analogy may help : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-

BobMcBob profile image
BobMcBob in reply to tattybogle

Many thanks tattybogle, that's a very useful quote from that GP. That is what I and others are often missing, a view to the "12 months ish" timeline and a relatable understanding of what the body is going through. Its not like a typical 'take a course of antiobitiocs and you'll be fine' that we might be familiar with.

Yes, cautious approach where I live. I did say, wow 62.5 mcg is a very specific number, and she replied something like "yes, we are not allowed to increase in larger stages due to side-effect risk". I'm okay with that approach as I generally feel better now than I did before (probably an indication about how grim I felt before, without realising it).

I think here the GPs use a national computer system for recording data, prescriptions, side-effects and treatment plans, meaning they key in the condition and it suggests them the treatment plan. Cautious but consistent approach. Probably helpful as the doc appointments are via the phone and could be that GP is swapped out!

Thanks for the links. Reading them now.

HealthStarDust profile image
HealthStarDust

“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”

Yes, very relatable to my experience thus far, as well as acute joint pain before things ease off again. Although, I also found out the horrible joint pain was also a sign of too much medication too soon as well. Tricky things hormones, natural or synthetic, our own or not.

BobMcBob profile image
BobMcBob in reply to HealthStarDust

The "joint pain" / "hip" pain in my case really threw me. I had no idea it was a possible side effect, thoughts of how long will this last, is this permanent pain, do I have arthritis and so on. Awful. I wouldn't wish that on anyone, but am glad to read (and sorry for you HealthStarDust) that others have had that as it helps explain it. Thanks for sharing.

HealthStarDust profile image
HealthStarDust in reply to BobMcBob

The side effects overlap with the symptoms of both hypothyroidism as well over medication, it’s hard to tell what’s happening until one adjust’s their dose it would seem. I am hoping to get through it. And, thank you so much for sharing.

JAmanda profile image
JAmanda

my hips were unbearably painful for years! You are lucky yours improved so quickly. But yes, v likely related to hypothyroidism. Hair loss v definite sign. I was lucky not to lose it on my head but had none on arms and legs.

Kowbie profile image
Kowbie in reply to JAmanda

hello Amanda can I as you have you got rid of the joint pain now ,I’m finding I can’t walk very far at all and really feel a bit trapped by it hope you don’t mind me asking thankyou

JAmanda profile image
JAmanda in reply to Kowbie

I don’t know really … my joints are ok but my feet are dreadfully painful. Really don’t know if it’s thyroid related.

Kowbie profile image
Kowbie in reply to JAmanda

oh ok thanks for replying, hope you soon get sorted

gabkad profile image
gabkad in reply to JAmanda

My feet ached when I was underdosed.

BobMcBob profile image
BobMcBob in reply to gabkad

Looking back, a couple of months before I was diagnosed we spent 3 days in London, looking at all the sights. My feet really, really ached during those days (something I'd never had before), so bad that I thought it was the shoes I was wearing and threw them away! That hasn't come back now I am on medication.

BobMcBob profile image
BobMcBob in reply to Kowbie

For me 2 videos helped with hip pain:

The tennis ball method:

youtube.com/watch?v=Gp-mUvu...

then the rolling tube

youtube.com/watch?v=NkhE6Jh...

Mostly these videos are by very flexible and strong people, so I adapted them to what I could do. Lying on a tennis ball or tube and kind of putting pressure on the "bruise like feeling" where the pain was worse led to is feeling less painful after 30 secs of this pressure pain.

I think its called trigger point massage, you target the muscle or tendon where it really hurts (to me it was if I had a painful bruise that wasn't a bruise), and via human elbow massage, tennis ball or tube REALLY get in deep where the pain is and try and "break it down". For me I did that for a day, then let myself recover, then did that again and it seemed to really help. You can also do the tennis ball against a wall, where you stand up and just learn back on the tennis ball between you and the wall, where you have your weight on the leg you are not massaging.

Hope it helps or you get some relief some other way!

Kowbie profile image
Kowbie in reply to BobMcBob

thankyou for that , I’ve tried the videos a couple of times but they don’t seem to be working I’ll try again later.I’ve been to physio therapy today and he has given me a few exercises to do as well but thankyou for your reply I hope you keep heading in the right direction thanks again

BobMcBob profile image
BobMcBob in reply to Kowbie

Sorry about that, links seem to be a bit weird here, try copying these after the phrase try: and then putting them in your browser

try:youtube.com/watch?v=Gp-mUvu...

try:youtube.com/watch?v=NkhE6Jh...

BobMcBob profile image
BobMcBob in reply to BobMcBob

Okay, that didn't work either!!!

try these but change the D to an s:

httpD://youtube.com/watch?v=Gp-mUvu...

httpD://youtube.com/watch?v=NkhE6Jh...

BobMcBob profile image
BobMcBob in reply to BobMcBob

okay that not working either. Sorry about all this - no doubt it is a fault my end. Go to YouTube and search for

Piriformis Muscle Release Brian Brian Abelson

and

BEST way to Foam Roll the Piriformis for Sciatica Dr. Jordan Fairley

and that way you should find them both. Sorry for the needless runaround!

Kowbie profile image
Kowbie in reply to BobMcBob

thankyou I’ll try the utube s I don’t know about transferring it to my browser,not too cracky on iPad thanks

JAmanda profile image
JAmanda in reply to Kowbie

actually there was just one tiny thing I was told to do and I think it helped! When you go to bed and when you wake up, lying in bed, put your knees up then do 10 buttock clenches and hold each for 10 seconds.

Kowbie profile image
Kowbie in reply to JAmanda

oh thanks for that JAmanda I’ve been to physio this week and that’s one of the exercises he gave me but thankyou

Polly91 profile image
Polly91

Bob this is very interesting and well explained - I read the whole thing (my T3 must be good at the moment!).

Sounds like you are on the path to getting to energy etc back.

I know several people who were diagnosed with either hashimotos or RA during or after the pandemic. I think the virus has had an effect on autoimmunity in some people.

Hopefully with the right level of Levothyroxine and optimal Nutrition (good levels of B12 , folate , iron and vitamin D) you can be very healthy in your next 50 years! Why not ?!

All the best

BobMcBob profile image
BobMcBob in reply to Polly91

My guess is that I inherited it and it just became the age where it kicked in. Just the pandemic meant less chance or inclination to see a doctor, and as behaviour patterns changed I think that just blinded me from seeing it.

I agree with healthy for the next 50 years! Good point on nutrition.

My father is 82 and doing very well with it, I think he is on 200 and walks everyday and is "young" for his years. He just sees it as another pill to take and do as you are told, but he didn't show any symptoms he was aware of. Was simply tested because his half-brother was diagnosed. Its the luck of the draw!

Decant profile image
Decant

Welcome to the forum! I'm another bloke (56 next week) and my story is different (hyperthyroid, zapped, on treatment for life) but I wanted to say hi as thyroid issues predominantly affect women.

You'll get excellent advice here. Someone more experienced will say you need to get your vitamin levels fully checked as these affect thyroid function. B12, D, etc. Follow their advice!

I think you're in the UK?

If you're able, then get full set of PRIVATE blood tests (see links on the site to get discount codes). Closely follow the protocol about testing. Post the results here to inform your next steps. Be warned, it is a huge rabbit hole! NHS are behind (preferring the magic TSH over listening to symptoms) and you MUST take control of your own health, checking and challenging what your GP says.

You have the LEGAL right in the UK to see all your patient notes. Worth knowing down the road as treatment progresses.

One thing I've had to learn is a degree of patience and dependence. Dare I say "humility". It's a real pi$$er and hard, but I've had to let go of *some* of the manly "l can fix everything", do anything. I've recently started running, swimming and gym but I'm still getting shattered and recovering more slowly - I've had to learn I can't do it all, even taking creatine, protein and electrolytes you help recovery.

Good luck!

BobMcBob profile image
BobMcBob in reply to Decant

Good to hear from another bloke (no disrespect ladies, but you know what blokes can be like!). Yes advice here is excellent.

I'm originally form UK but now living in one of the Nordic countries. Luckily here the is a patient website where you can see every lab test result, appointment summary by the doctor and prescription going back years. But I am also making my own test results document and how I feel notes for each test so that I can look back and really remember what was what.

Your point on patience and humility - good word choice is very valid. First week or so on levothyroxine I called my "superman phase", my wife mentioned a 5km run in August she was doing and I said: sign me up, thinking I would be able to jog and it would be a good goal to aim for. We've now concluded I will walk it, a driven power walk if its a good week or just see what happens stroll if its not. Similar with swimming, some sessions feels like there is nothing in the tank, other sessions feel somewhat normal.

Steady wins the day! Good luck to you too, Decant.

Decant profile image
Decant in reply to BobMcBob

Thanks! I don't know if it will help, but

1. Have you checked testosterone (not just total, but also free and SHBG, etc). Our levels decline as we age and impact energy levels and so much more. I'm not saying it's going to help, but worth knowing. I've had to go private as my levels were above (just) the NHS levels (their protocol is pants too). Not too expensive. Early days but i'm hopeful.

2. Exercise supplements to help recovery (do your own research please!): creatine for energy (including brain), protein to build muscle and electrolytes (I regularly cramp when swimming).

3. Vitamins and supplements. In addition to other vitamins I also take Selenium and Lion's Mane.

I wish you well, feel free to message me if you wish.

JosephMaxwell profile image
JosephMaxwell

Hi Bob

I can't give you any advice re your thyroid..as Ive only recently joined the forum, as my mum has thyroiditus ..but I was a devotee of 'manly yoga' ( that made me lol) for many years ..I've practiced pretty much all the different forms ...I guess your choice will depend on what's available in your area ..the best piece of advice I can give is to try and find a small size class , were the teacher can spend a little time making sure you're doing everything correctly ..and to advise the teacher of your health issues, so he/ she can let you know whether certain movements during class might not be beneficial.

I've always found people who do yoga are super friendly, and the time spent at the end of each class is superb for relaxing.

I hope you find a great teacher/ class

Yogo Joe ( aged 57 ) fine purveyor of ' manly yoga'

BobMcBob profile image
BobMcBob in reply to JosephMaxwell

Thanks Joe. That would make a great t-shirt: fine purveyor of ' manly yoga'

I will probably take a look in the autumn for a class and keep in mind your comments on class size. I found a couple of standing yoga squat exercises, and a simple rock forward and back super slow "mark time or running" exercise to help with balance etc. So these will become my 'break from working in front of computer" PT.

Teuchter profile image
Teuchter

Hi Bob.

Having read your post, I just wanted to plant a couple of seeds in your (apparently very fertile) head.

I was diagnosed with hypothyroidism, and prescribed thyroxine, many years ago, at the age of 33. When I started taking thyroxine, some symptoms improved (eg: I no longer felt like sleeping 24/7) but in other ways I began to suffer worse: anxiousness, sluggish cognitive function, muscle aches and wastage, low libido, and a general feeling of progressing towards being a fragile old man.

Thyroxine increases SHBG (sex hormone binding globulin), which results in a decrease in free testosterone levels: it is therefore possible that thyroxine treatment (although essential) could have unfortunate side effects in 50 year old men.

Over the years (I'm now 55, and functioning reasonably well for my age, most days), I have found the following to benefit me.......

...BUT: PLEASE NOTE I HAVE NO MEDICAL TRAINING WHATSOEVER, AND I THEREFORE DO NOT RECOMMEND THE WRECKLESS PATH OF EXPERIMENTAL SELF-MEDICATION THAT I HAVE FOLLOWED!

Danazol: a prescription-only medication (in the UK), used to treat endometriosis in women) has been used "off-label" in middle aged men, to reduce estrogen and SHBG, thereby increasing free testosterone.

Tribulis Terrestris: a herb which sometimes increases testosterone levels.

Mucuna Pruriens: a herb which sometimes mitigates the early symptoms of Parkinson's disease, and can sometimes improve mood and/or increase testosterone levels.

I'm not suggest that YOU rush out to buy and try these things; I'm merely recounting my experience, which may give you food for thought, and avenues for further research.

Kind regards

Geoff.

BobMcBob profile image
BobMcBob in reply to Teuchter

Thanks Geoff. With the mention of playing the bagpipes fairly badly in your profile, you were going to suggest daily injections of Iron Bru! That is some journey you've been on. I will add to my notes under a section titled curious and curiouser. Joking aside, thanks as it is always helpful to know of different approaches and experiences.

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