New diagnosis-exercise : Hello all, I’m very... - Thyroid UK

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New diagnosis-exercise

Pearlteapot profile image
23 Replies

Hello all, I’m very sorry to join you 😘.

Im a 60 year old menopausal woman and was diagnosed last month with a TSH of 70. I’m currently on Levothyroxine 75mg. I have lots of questions but will start with exercise. I’m used to being very active, pre-pandemic I practiced yoga 4-5 times a week, cycled everywhere, did Olympic weightlifting 2xweek and spent weeks at a time hiking in the Pyrenees with a full camping pack!

Now I can’t. I went walking in the Lakes before Easter and my tummy collapsed and I could practically feel my mitochondria drain of energy. Same with weight training and cycling. Collapse for days even after an ‘easy’ session

Normally when one trains to improve fitness one pushes just little bit past where you were before and/or maintains I feel like that’s not an option with hashimotos and that you are limited by your free T3 which is determined by your t4 medication dose and that’s it Limit. So you are essentially capped to a certain level of exertion for ever and cannot aim to progressively get fitter /expand the envelope ?

Is that really true? Can you expand capacity? Any tips?

Many thanks in advance

Clare

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jimh111 profile image
jimh111

I find I can exercise quite hard but it takes several months before you can regain your strength to push a bit. I think you should take it a bit easy for a few months and then slowly build up. Even when your thyroid hormone levels at back to normal it takes some months for the body to restore itself back to normal.

One month is too soon, I think it will be three months plus before you can start to gradually build up.

SlowDragon profile image
SlowDragonAdministrator

How long have you been on 75mcg levothyroxine

Which brand of levothyroxine are you currently taking

What were results before increasing to 75mcg

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

75mcg is only one step up from starter dose

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Have you had thyroid antibodies tested yet

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

CBDB profile image
CBDB

I am so sorry to read that, as it must feel like a such a struggle.

Also not sure I have anything to say which helps, as Hashimotos is so complicated that it seems so different for so many people. I’m also post-menopausal and Hashimotos.

But if my experience is anything to go by, then it should be possible to get to a point where you can push yourself forward, at least that is my experience. Have a look at my profile page and you’ll see my fitness levels coming back. I probably started from a similar place, having been left undiagnosed for at least 5 years and under medicated for another 5.

That meant 10 years inactivity after having been a fairly active (cycling, kayaking, climbing) person.

But since 2-3 years, and with help of various HU forums, my health journey feels like it’s moving forward. I managed to train myself to running 10k and row every day now.

The advice on physical activity seems to be very mixed, so what I just did was push forward but listen to my body and track levels and diet and nutrition in order to make informed choices. This forum helped me immensely with that.

I have still my challenges (weight) but I do feel quite fit.

I think what helped me is

- right medication levels

- at right times

- adequate nutrients

- and a lot of patience

- treatment with both t4 and t3

Hope you find a good way forward. Let us know if you find what works as I do know there are quite a few Hashimotos runners also always trying to improve their own health journeys.

SeasideSusie profile image
SeasideSusieRemembering

Welcome to the forum Pearlteapot

So you are essentially capped to a certain level of exertion for ever and cannot aim to progressively get fitter /expand the envelope ?

No, not really. Hard exercise depletes T3. If we are optimally medicated we should have good levels of T3 which should, theoretically, enable us to exercise. You may not get back to your previous level but you may be able to get near to it. For now, gentle exercise is the way to go - yoga, swimming, walking.

The essential thing is to keep an eye on FT3 level but unfortunately this is rarely tested, many GPs just test TSH and adjust dose by that, some also test FT4 but still only use the TSH to determine dose.

You are at the start of your thyroid journey, have been started on a reasonable dose of Levo. You should have your thyroid retested 6 weeks after starting Levo and a dose adjustment made if necessary (it usually is necessary to have a few increases before reaching your optimal dose). After each increase you should be retested 6-8 weeks later.

If GP only tests TSH, or TSH and FT4, then maybe you would wish to do what many members here do and that is get the full test privately to include FT3 as well. There's no guarantee that your GP will accept private tests, or accept that your FT3 isn't optimal but at least you will know and can decide what you want to do.

The aim of a hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. There are no set rules, we are all individuals and need to find our own sweet spot.

If you wish to test privately we have recommended labs who offer home fingerprick tests, or they can be done with venous blood draw for extra cost. Details of companies and discounts they offer here:

thyroiduk.org/help-and-supp...

Cheapest for just TSH, FT4 and FT3 is Monitor My Health and this is an NHS lab at Exeter hospital so that's useful as it's more likely to be accepted by a GP.

If you want to do a thyroid/vitamin bundle then Medichecks and Blue Horizon are the most popular.

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, take your Levo one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours. You can take your Levo when it suits you - morning, evening, bedtime, middle of the night if you regularly get up to use the bathroom, just be consistent and follow the guidance above.

As you have Hashimoto's then here is some general information if you don't know much about it:

Hashimoto's is where the immune system attacks the thyroid and gradually destroys it.

Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.

Come back with any questions, we have many experienced patients here who are always happy to help.

McPammy profile image
McPammy in reply toSeasideSusie

Excellent advise.

Pearlteapot profile image
Pearlteapot

Wow thanks for the quick and comprehensive replies. I will absorb and reply later. Just going out to a yoga class. Fingers crossed. I’ll take it easy. I ❤️ Yoga so much.

Pearlteapot profile image
Pearlteapot

Thank you SeasideSusie for the links for testing options. Extremely useful. I panicked rather at first diagnosis and have paid well above the odds for testing via a nutrition advice consultancy as I didn't realise I could get tested independently of registered medics. I'm going to make a separate post about testing as I have questions.

SlowDragon asked about my levels. My TSH at diagnosis was 71.10 (0.3-4.2) with free T4 of 3.9 (12.0 - 22.00). The day after my test was a Saturday so the GP was closed. I got an emergency call from 111 telling me to start on Levo 'immediately' No wonder I freaked out. I had no idea I was hypothyroid. I had never heard of it. I then I started to read about it and it said you can 'look after yourself' with gentle yoga, super I thought and off I went to a yoga class, collapsed, then had a panic attack because I had collapsed and ended up in A&E where a consultant assured me I was not about to go into a coma even though I was sure I was already practically in one (!).

I was started on Levo 50mg (MercuryPharma)

My Vit D levels were 18nmo (51-250). When I finally saw the GP 10 days later she put me on prescription level Vit D 20,000iu on a 6 week course. The levo had made me feel quite a lot worse than before my diagnosis but as soon as the Vit D started I felt immediately improved.

I was re-tested at 4 weeks by which time my TSH was down to 15 (0.3-4.2) and my T4 15.6 (12.0-22). I thought that was a brilliant transformation but I understand from reading this forum that TSH should be below 1 and that one shouldn't settle, if possible, for being in the higher range. Anyway, I didn't know that and agreed with my GP to stick at 50mg Levo and see if things continued to improve. Also it was an afternoon test and now I know better!

My Se Thryoid peroxidase antibodies were at 600 IU/ml (0-34). Seems pretty high? I hope that doesn't mean my thyroid gland is totally destroyed. I read somewhere on here that the scan will reveal the level of destruction, My scan is next week.

I don't yet have T3 test although I have sent off for a private one from 'Lets Get Checked' (before I saw the Thyroid UK recommended list)

Then I went off to the Lakes, felt nauseous and had digestion collapse and couldn;t sleep (as described in my first post). Same again after cycling. Then back home I felt unremittingly awful, nauseous, drained at a mitochrondrial level, crying, desperate. I asked the Dr to increase my dose by 25mg, which he did although it's a different brand, not sure if that matters. It's Wockhardt. So now I have been on 75mg for a week.

That's made a big difference. I can tell that I'm not right and I'm severely restricting my activities, going to bed very early, but I am functioning. Exercise wise, which is what this thread is about, I am walking about 4km a day, trying to 'swim' in the natural ponds but let's be honest, it's just a 'dip' for the cold water therapy, and doing one yoga class per day where I am taking it easy. I took this week off work to look after myself. I'd say that is my limit, by 9pm I can feel it, that hypo tiredness that I now recognise as different from the familiar kind of tiredness.

I so fundamentally believe that exercise heals that my priority will be fitting in as much as I can tolerate while staying 'gentle'. Blood and its nutrients must flush through the troubled body carrying away the toxins to the liver, improving metabolism (even when metabolism apparently totally jiggered by hypo!), keeping a flexible spine and hips so that the nervous system operates smoothly without constriction between the vertebrae. And the heart of course.

I am walking (hills allowed), yoga and swimming - for now. End yoga class with a shoulder stand and fish pose to constrict and then stretch the thyroid.

Now I'm going to make a separate post with testing questions.

Thanks. Any comment on anything I've said most welcome.

SeasideSusie profile image
SeasideSusieRemembering in reply toPearlteapot

Pearlteapot

I asked the Dr to increase my dose by 25mg, which he did although it's a different brand, not sure if that matters. It's Wockhardt. So now I have been on 75mg for a week.

It can make a difference with some people, others can take any brand without a problem. It's best, when you know a brand works for you, to stick to that one brand because the guidelines state that with any brand change retesting should be done a few weeks later to check levels.

When a brand doesn't make a particular dose size tablet, eg 25mcg, then it's possible to use a 50mcg tablet of the original brand you know is OK for you and cut it in half to get 25mcg, or take 50mcg alternate days to average 25mcg daily.

You will need to continue testing/increasing every 8 weeks now until your levels are where they need to be for you to feel well. There are no set rules, it's down to the individual to know their own sweet spot and what dose is needed to achieve that, but quite often it's a TSH of less than 1 with FT4 and FT3 in the upper part of their reference ranges.

Just be gentle with yourself, be patient, hopefully everything will work out well in time.

My Vit D levels were 18nmo (51-250). When I finally saw the GP 10 days later she put me on prescription level Vit D 20,000iu on a 6 week course.

This is Vit D deficiency and the guidelines state:

cks.nice.org.uk/topics/vita...

If rapid correction of vitamin D deficiency is needed, for example in people with symptoms or about to start treatment with a potent antiresorptive agent (zoledronate, denosumab, or teriparatide), prescribe a fixed loading dose followed by regular maintenance vitamin D therapy 1 month after loading.

The loading regimen should provide a total of approximately 300,000 international units (IU) of vitamin D, given either as separate weekly or daily doses over 6–10 weeks. See the section on Loading dose regimens in Prescribing information for more detailed information.

Maintenance therapy of vitamin D equivalent to 800–2000 IU daily (up to a maximum of 4000 IU daily for certain conditions such as malabsorption following specialist advice), given either daily or intermittently at a higher equivalent dose.....

If correction of vitamin D deficiency is less urgent and when co-prescribing vitamin D supplements with an oral antiresorptive agent, maintenance therapy (800–2000 IU daily) may be started without the use of loading doses.

Once you have finished your loading doses you should be retested. Many doctors don't retest and if yours doesn't then it's strongly advised to do this yourself (details below).

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L. Your GP wont agree with this, they are just interested in getting you into the "adequate" category which is >75. It's suggested here to follow the advice from the Vit D experts mentioned here.

Once you have your new results after finishing your loading doses, post them here for suggestions on how to go forward. Your GP may prescribe a maintenance dose of 800iu but that wont be enough. You need to reach the recommended level above before going on to a maintenance dose.

Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick dried blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Pearlteapot profile image
Pearlteapot in reply toSeasideSusie

SeasideSusie Thanks for the info about adding K2 to activate the D3. Is there any reason not to go for a combined capsule like this one, which is the brand you mentioned and has the trans form of K2?

amazon.co.uk/gp/product/B08...

The nutritionist that I saw recommended this product but the problem with it is that I can't see how you know how much you are dosing, it's liquid form. I'd prefer my D3 in a measured capsule. (Also I don't know why I need omega 3, I haven't done a test and I eat quite a lot of salmon, mackeral and walnuts, so the whole bottle doesn't seem a priority to me except for the D3 content, which it sounds as if it would be better to get with a K2 mix?) amazon.co.uk/gp/product/B00...

SeasideSusie profile image
SeasideSusieRemembering in reply toPearlteapot

Pearlteapot

Thanks for the info about adding K2 to activate the D3.

K2 doesn't activate the D3. As mentioned above:

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

Magnesium helps D3 to work.

Is there any reason not to go for a combined capsule like this one, which is the brand you mentioned and has the trans form of K2?

No reason you can't go for a combined one but the D3 and the K2 have to be in the right proportions. The one you linked to has 1,000iu of D3 and 100mcg K2 whereas 100mcg K2 is enough for up to 10,000iu D3. So if you needed, say, 4,000iu as a maintenance dose and you took 4 of those capsules then you'd be having 400mcg K2 which is way too much. The balance has to be right in these combined supplements.

The nutritionist that I saw recommended this product but the problem with it is that I can't see how you know how much you are dosing, it's liquid form.

It does tell you. 1 x 5ml teaspoon is the serving and it gives you all the measurements per serving, eg 1 x 5ml teaspoon gives 1,000iu D3, etc.

Also I don't know why I need omega 3,

I would ask your nutritionist why she's recommending that supplement.

Lulu2607 profile image
Lulu2607 in reply toSeasideSusie

Thank you for excellent info SSS. I will save the post and refer to your info from time to time as it's extremely useful and comprehensive.

BiscuitBaby profile image
BiscuitBaby in reply toPearlteapot

Hi PearlteapotI was just reading your post and recognised a bit of myself in there. I too was very active before my diagnosis in 2019. I also trued to continue my exercise however I now feel that I shoukd have listened to my body better. The "collapses " you speak of are your body's way of telling you to slow down. The lack if thyroid hormone will prevent your body repairing and its recovery. You will get your fitness levels back but right now I think your focus should be on getting thyroid levels right for you and nutrients. I speak from experience. I wish I had listened to my body more I the early days. Funnily enough my exercise tolerance got lower as the months went on. I hadn't found this forum so I was none the wiser at that time.

I wish you the best of luck and you've come to the right place for advice and information. It's invaluable!!

SlowDragon profile image
SlowDragonAdministrator

So now I have been on 75mg for a week.

That's made a big difference. I can tell that I'm not right and I'm severely restricting my activities, going to bed very early, but I am functioning. Exercise wise, which is what this thread is about, I am walking about 4km a day, trying to 'swim' in the natural ponds but let's be honest, it's just a 'dip' for the cold water therapy, and doing one yoga class per day where I am taking it easy. I took this week off work to look after myself.

That’s a huge amount of exercise for your current stage …..you probably need to tone it down a little …..a small gentle walk of 1km approx morning and afternoon….rather than exhaust yourself on 4km walk

Likely to need further increase in levothyroxine after next test

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Once you finish loading dose vitamin D from GP you need to retest vitamin D levels and you will need ongoing daily vitamin D. Usually at higher dose in winter than summer. Test twice year when supplementing, especially while working out what your necessary maintenance dose vitamin D is …..

You need GP to test folate, ferritin and B12. Likely to be low too

Plus coeliac blood test if GP not tested yet

Pearlteapot profile image
Pearlteapot

My Dad is coeliac so I am now kind of assuming that I am too except that it is presenting as Hashis rather than directly as coeliac as his does. I stopped eating gluten pretty much immediately after diagnosis. The nutritionist advised me to have a Cyrex 3 and Cryex 4 array test. These tests are hugely expensive and I am dubious of their value when I have been gluten free for the last 4 weeks already. The Cyrex website refers to a protocol for preparing for the test, but they have not given me this! Anyway, I've just written to the nutrition place to insist on being given the protocol and to warn that I may need to re-arrange the blood drawing so that I can eat gluten for a while to avoid a false negative and waste of the test fees. Grr.

SlowDragon profile image
SlowDragonAdministrator in reply toPearlteapot

You should have been tested for coeliac as soon as your Dad was diagnosed

FancyPants54 profile image
FancyPants54

I'm afraid you are doing way too much exercise for someone in your current state of health. You will only risk doing yourself more damage. So stop it. I can tell from your posts that you think exercise is going to cure you. It won't. It can make you much worse. So it's time to let it go and concentrate on getting your levels of thyroxine right before you start up with all this. A short walk, twice a day, is more than enough. Patience is the biggest thing we hypos have to learn. And this condition can take bucket-loads of patience to get right. You won't get it right if you keep pushing your body to perform like a Duracel Bunny. And whatever you think you are doing, you are pushing it way too hard. Before the end of the 6-8 weeks period when you retest on 75mcg you will probably start to slip down again, feeling more tired and lethargic. You can't speed up the blood test and new dose so if you push now you risk feeling worse sooner and therefore longer than if you take it easy.

I'm sorry. I know it's not what you want to hear. But it's the only way.

Lulu2607 profile image
Lulu2607

Hi. I agree with Fancypants. Hypothyroidism isn't an illness you can cure or beat. It's a condition which means you need levothyroxine to replace what your thyroid can no longer make. You should maybe think of yourself as in the recovery phase now you have treatment. Optimal nutrition, lots of rest and gentle exercise perhaps, until your body and mind regain some of their strength and ability. I am about a year after starting treatment and my TSH was 161 at diagnosis. Personally, after starting treatment, I felt like I'd just come through a drought and someone had given me water. After that initial boost things improve and plateau and decline a little as your body recovers and gets used to the new medicated regime but it takes a lot of time and patience. Be kind to yourself and aim for R and R rather than trying to push yourself. I've learnt a lot from reading posts on this forum. You need to get all the info you can as most Drs unfortunately aren't very knowledgeable about the topic. I find this surprising given it is amazingly common.

Pearlteapot profile image
Pearlteapot

FancyPants54 Lulu2607 Thanks both. You're right, it's not what I want to hear but I hear you anyway. I thought a 4km walk was taking it easy, but I still do hear you.

@Lulu2607 what was your condition with a TSH of 161? At TSH 70 I was fairly zombie. Or is the TSH not necessarily proportionally related to how bad you feel?

It is surprising isn't it (the lack of knowledge). I am only at the very beginning of this but was surprised to see a video on the Thyroid UK website with a debate on T4 only versus combined therapy. The guy arguing for combined therapy said that the trial which led to the clinical recommendation to abandon mixed therapy was ancient, based on a too small sample, unreliable for other reasons that I can't remember, contrary to patient experience and that the endocrinologists are doing their patients a huge disservice and need to modernise.

Edited to add and thanks also BiscuitBaby saying the same thing.

Lulu2607 profile image
Lulu2607

Hi Pearl teapot. At TSH 161 and no detectable T4 I was very ill. My hair was thin with bald patches, I had an odd fleshy spare tyre and a solid pot belly although I wasn't eating much as my throat and tongue were swollen. I had embarrassing stomach issues. Puffy face, runny eyes, my teeth started going soft and breaking and I was having a mental breakdown with uncontrollable crying fits and panic attacks. I completely lost all the hair on my legs and I was freezing. Unbelievably I still got up at 6am to commute 25 miles to do a stressful professional job. I was glad of face masks to hide my face but I cried every morning as I tried to do something with my hair. I don't know how it got that bad but Drs kept doing FBC without testing thyroid- for over a year. If only face to face appts had been available a Dr would have known from looking at me. Instead I was offerred high dose statins (cholesterol 14, now normal), and referral to mind matters ( not taken up). My hair loss was attributed to stress. You will get better but give it time. You need to heal and that's not a quick process. I'm so glad of all the info I've read on here and on the TUK website. It's invaluable. I'm still recovering, and learning as I go.

Pearlteapot profile image
Pearlteapot

Lulu2607 you poor, poor thing! How horrifying that you got into that state without intervention. I can't believe you were somehow commuting!

My best wishes

Clare

I can't stress enough the importance of what others are saying here.I was only diagnosed last October after having symptoms for 2 years.

Before that I was running multiple races per year. 5-10k mostly. Working out 3-5 times a week. Always active doing 15-20k steps a day and I learnt the hard way to stop.

Soon as I started on 50mcg levothyroxine I was like right, Fitbit back on, off we go.

Definitely not how it worked lol !!

My TSH is now 1.4 and I'm on 100mcg. Can't remember the other figures lol.

And I still am not close to getting back to where I was yet. Although things are improving, I'm still learning where my limits are. But I would say definitely take a step back. This condition is not something we can exercise our way out of.

I am back to coping with daily activities, the fatigue is lifting. I can achieve 10k steps most days without collapsing. But I still can't add too much extra on top. I did some decorating couple weeks ago as my daughter moved out to uni. And really paid the price after. I actually have ended up on antibiotics twice in the last 3 months (tonsillitis and a tooth abscess)

First time in my life for both so that's really knocked me back a bit.

It's all a learning curve but definitely just take a step back. And give your body time to heal itself. We will get back there again. One step at a time xx

Littlebee profile image
Littlebee

Hello Pearlteapot

I agree with most of the above and I’d like to share my experience to give you some hope. I’m a similar age to you (59) and exercise has always been a central part of my life i run and cycle and walk and like Yoga. Many of my friends are from the running and cycling clubs i am part of. I was diagnosed with hypothyroidism around 6 years ago. I’m also a coeliac with non responsive cd. Initially on Levothyroxine i felt worse - much more tired and less able to exercise so i pretty much stopped as i just couldn’t do it. It’s taken me a long time to find my optimum levels of thyroid meds and vitamins/minerals. It’s not been straightforward and so patience and time are key. Don’t be afraid to keep going back to the GP and get re-tested - ive been fortunate my GP is sympathetic so i dont have to pay for repeat blood tests and i have vitamins and minerals checked for the coeliac disease.

One thing i did pay privately for was the DIO2 test to check if i have any genes that will hinder my conversion of levothyroxine T4 into its active form T3 liothyronine. This was really helpful as i do have a problem converting and so i take Liothyronine which has helped hugely. The issue i found though is i was given 20mcg and left to get on with it and i think that was too much so ive had to experiment until i have the balance of the T4/T3 and im now finding I have more energy to exercise. Pushing my T4 into the higher part of the range and T3 too - that may not be right for you - you will have to find your own optimum point.

I’m now back running and cycling so dont give up hope its a long and windy road there is a lot to learn and i wish you all the best getting where you need to be.

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Pearlteapot

Hi Littlebee Thanks for encouragement. I also did the DIO2 test and am homozygous (i.e. the worst outcome - likely to have problems converting to T3). My current consultant is not interested in the test and is not interested in my T3 levels either.

However, a couple of weeks ago he increased my dose by 12.5mcg and I'm like a new woman (most not all of the time). It was the extra that I needed. When I say new woman I mean more like the old woman (not old, obviously) I was before diagnosis, I feel alive again. Last weekend I walked 23km on the N.York Moors and didn't even conk out in the evening so something must be right. I have also re-started my yoga practice/classes about 4 times a week and swimming 500m every morning so finally I am able to be more active.

Not all is right and I'll be very interested to see my T3 levels at my next test, I suspect I will need another 12.5mcg of levo, but I am better now than I have been for a long long time.

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