Confused on where to go to improve symptoms of ... - Thyroid UK

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Confused on where to go to improve symptoms of general fatigue, muscle fatigue and water retention in face

Joaniepig profile image
34 Replies

I was diagnosed with Hashimotos a number of years ago and was taking Levi thyroxine at 175mgs per day seemingly well. I had an independent blood test done in 2023 which highlighted I was overmedicated however I was not presenting any symptoms. Through panic I took a private appointment with an endocrinologist who suggested I try the Efra thyroid to help with memory/ brain fog and stabilise my thyroid.

I’ve been on Efra for a year now and my blood tests are still all over the place and my fatigue is at an all time high. I’m a fitness professional so train at a reasonably high intensity 5 days per week ( competitive body building) and always question as to whether my dose should be scaled with regards to energy output.

At the moment I’m retaining a lot of water in my face, lips turn blue and pale skin when exercising and my recovery is poor.

Currently taking omega 3, glutamine, vitd3/k, magnesium bisyclate and carnitine and have a follow up consultation this week with my specialist.

wondering whether just to go back to thyroxine and try the bovine thyroid tablets and adrenal support to see if that helps?

Anyone who is an athlete specialist or someone that could be recommended would be greatly appreciated as I don’t think my specialist appreciates the stress that training puts on my system but it is my job and something that I enjoy.

Recent bloods for reference

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Joaniepig
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SlowDragon profile image
SlowDragonAdministrator

was test early morning and did you split your Erfa as 2 or 3 doses day before test

How much are you taking

Your results suggest you are on inadequate dose

Some members add Levo alongside NDT

Suggest you look at adding 25mcg Levo

Retest in 6-8 weeks

What are most recent vitamin D, folate and ferritin results

Joaniepig profile image
Joaniepig in reply toSlowDragon

Vit D 91.0nmol/l

Folate 30.6nmol/l

Ferritin 192.0ug/l

Cholesterol is high

Blood sugar high

B12 very high

I take split dose 60mg Efra. 1 first thing then 1 mid afternoon but that second dose isn’t always optimal as I’m working and sometimes need to eat so I do worry about malabsorption

Joaniepig profile image
Joaniepig in reply toSlowDragon

blood test was taken at 14:50pm so after 2nd dose of Efra

Joaniepig profile image
Joaniepig in reply toSlowDragon

My testosterone is also very low which I find surprising considering I do weigh train

currently 0.09nmol/l so obviously not getting any kind of hormonal response from the weight training and just flooding inflammation 😭

SlowDragon profile image
SlowDragonAdministrator in reply toJoaniepig

So TSH lowest after lunch, though on NDT TSH is almost always very low or suppressed

Last dose Erfa should have been 8-12 hours before test

FT3 would have been even lower

JumpJiving profile image
JumpJiving

  Joaniepig You appear to be on an inadequate dose for your thyroid. I would add levothyroxine, then re-test after 6 weeks or so. Note that if you have a history of previous levo/NDT usage and blood test results, you might have a better picture of whether levo on its own would work for you, or whether the combination of levo + NDT is likely to work better.

I would be concerned by your elevated B12. Have you been supplementing B12? If not, you might want to get liver function tests done. Your GP should arrange that without argument - they are usually pretty hot on kidney and liver testing.

What I wouldn't do and I would strongly advise against, is going anywhere near any form of over-the-counter adrenal supplementation. If you suspect cortisol issues, get an early morning (8-9am) cortisol blood test done. If that shows issues, get referred to an endo.

I would also speak to your GP about your lips going blue during exercise. Could just be strenuous exercise, but could be one of many other things, some pretty fundamental to wellbeing.

Joaniepig profile image
Joaniepig in reply toJumpJiving

I have not supplemented b12 and liver function tests have come back with cause for concern as have blood sugar and cholesterol 😞

Tina_Maria profile image
Tina_Maria in reply toJoaniepig

Elevated liver function tests, together with high cholesterol levels and poor glucose are indicative of a low thyroid function. T3 especially is needed to clear glucose and cholesterol from your circulation. If you do not have enough T3 in your system, your liver metabolism is slowed down and you cannot process these, hence the levels rise and as your liver is struggling, your liver enzymes can also be elevated as a result.

In addition, as you are doing a lot of strenuous exercise, this will deplete your T3 stores, as this is needed in response to you exercising - but if you have not got enough T3 available, you are getting very easily fatigued! If you are exercising without having enough thyroid hormones available, you could actually doing yourself some harm.

Have you had an anaemia test? Pale skin and blue lips are indicative of poor circulation / poor oxygen levels. Your ferritin can be high or normal in range, if you have inflammation in your body, therefore it would be good to get iron tested independently to see if it is falsely elevated. If you have low levels of iron, your body might not have enough haemoglobin to transport oxygen to your tissues. I would try to get this looked at as soon as possible and until this is clarified, I would ease up on the high intensity training, as low levels of iron can put a strain on your heart.

sparkly profile image
sparkly in reply toTina_Maria

Wow, you're good. You've just wrote down about the liver and T3 exactly what I've gone through.

Tina_Maria profile image
Tina_Maria in reply tosparkly

It is quite astonishing what low T3 levels can have an impact on, and even more astonishing is that GPs and endocrinologists seem to be so clueless about it. They rather try to lecture you about your cholesterol, the importance of statins and question your alcohol intake, instead of getting to the root cause of it all 🙄. I do despair sometimes....

JumpJiving profile image
JumpJiving in reply toJoaniepig

Joaniepig What are the cholesterol levels and ratios? Total cholesterol has limited use, it is the levels of LDL, HDL, non-HDL, triglycerides, and the ratios that are of more use. My GPs used to see my total figure and panic, before then looking at the detail and breathing a sigh of relief.

(unfortunately, my levels have changed since those heady days, so I am now taking measures to get them back to where they were again!)

Joaniepig profile image
Joaniepig in reply toJumpJiving

ldl 3.2

Hdl 1.1

Tryglcerides 3.8

JumpJiving profile image
JumpJiving in reply toJoaniepig

Joaniepig Was that done as a fasting test, or had you eaten recently?

The LDL (bad stuff) is slightly high. HDL (good stuff) is barely above bottom of the range. Triglycerides are high, but that could be due to eating recently. If it was a fasting test, then the high triglycerides are indicative of risk.

Whilst thyroid/liver can affect cholesterol, it may be advisable to look at diet too. Mediterranean diet is recommended for sorting out cholesterol for those where diet is a factor.

Joaniepig profile image
Joaniepig in reply toJumpJiving

iron was at 15.9 mol/l

Joaniepig profile image
Joaniepig in reply toJumpJiving

from previous tests my levels are more or less the same as when I was on just thyroxine!

Tsh has always been very low

Free T4 was 41 ( when they said I was over medicated)

Tsh 0.088

Free T3 was 4

Not sure what total T4 was

SlowDragon profile image
SlowDragonAdministrator in reply toJoaniepig

Free T4 was 41 ( when they said I was over medicated)

Tsh 0.088

Free T3 was 4

Please add ranges

Was last dose Levo 24 hours before test

Joaniepig profile image
Joaniepig in reply toSlowDragon

Previous Levo dose was 175mgs daily

Ranges -

Ranges
SlowDragon profile image
SlowDragonAdministrator in reply toJoaniepig

Do you remember if last dose was 24 hours before test

Shows poor conversion rate/low Ft3

Your next step ideally would have been to

A) test and improve vitamin levels to optimal

B) reduce levothyroxine dose by 12.5mcg daily

Retest in 8-10 weeks

Reassess……then perhaps add small dose T3 prescribed alongside Levo is cheaper and more flexible than NDT

Joaniepig profile image
Joaniepig in reply toSlowDragon

I can’t remember tbh. After that initial blood test I contacted specialist endocrinologist and was advised to reduce levo to 150mgs. I was on 150mgs for 12 weeks and then drip fed Efra starting at 1/2 a tablet then building up to 2. Initially I was prescribed 2 1/2 Efra but seemed to feel jittery so went back to 2 and stayed on that since ( December 2023)

My endocrinologist seems to think it’s my hormones that are causing symptoms as my thyroid is ‘ stable’ and suggested hrt

sparkly profile image
sparkly in reply toJoaniepig

Wow! Something definitely not right. Your ft4 double the range and shbg on the floor.Low Shbg is a very good indicator of low thyroid.

Someone more knowledgeable will know more about this

Joaniepig profile image
Joaniepig in reply tosparkly

Shbg is at 27 now

Joaniepig profile image
Joaniepig in reply toJoaniepig

Those results were from 2023 when just on thyroxine

sparkly profile image
sparkly

Hi, this just my experience.I'm on T3 only and only recently started to exercise at the gym, strength training and walking.

All was well, till I started an 8 week challenge which I'd do 2 bootcamps, 2 strength training sessions and 12k steps a day.

By second week I was floored, would come straight home from afternoon class and be asleep within 30 mins. No energy whatsoever, I'd used up all my T3 energy and my body was screaming for more. I had to twice up my dose of T3 during the 8 weeks. Once I'd increase I could perform better, all be it the worst in the group and the everyday fatigue stopped.

Cardio exercise really uses up my T3 more so than strength training.

Not sure how much T3 is in Efra but I know won't be much.

Perhaps T3 or T4/T3 combo will work better for you.

I'm on testosterone, nearly 3 years now. Testosterone was what enabled me to start exercising. It's been the missing piece

Joaniepig profile image
Joaniepig in reply tosparkly

This is what I am thinking, that I need a higher dose on the days that I’m teaching classes and expending more energy.

I’m struggling to find anyone that will prescribe testosterone tbh as my levels have been non existent for the past two years

SlowDragon profile image
SlowDragonAdministrator in reply toJoaniepig

You can’t take different doses of NDT or T3 on different days

Best option is to improve low Ft4 (storage hormone) so on busy days you have plenty in reserve

Joaniepig profile image
Joaniepig in reply toSlowDragon

How do I do that?

SlowDragon profile image
SlowDragonAdministrator in reply toJoaniepig

By adding Levothyroxine (Ft4) alongside NDT

Starting with adding 25mcg levothyroxine daily

Retest in 8 weeks

May need further increase in levothyroxine after that

Many members on Levo plus T3 or Levo plus NDT find they need BOTH Ft4 and Ft3 at least 50-60% through range

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

T3 or NDT …..day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Joaniepig profile image
Joaniepig in reply toSlowDragon

Would I add that to my morning dose or afternoon or separate?

SlowDragon profile image
SlowDragonAdministrator in reply toJoaniepig

Most people take levothyroxine early morning or bedtime…..or in middle of night

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Post about Timings

healthunlocked.com/thyroidu...

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

sparkly profile image
sparkly in reply toJoaniepig

The private Endo should be able to prescribe you T3 instead of efra. Really you need to be seen on nhs so not to have to pay for it. Difficult to find T3 friendly endo let alone one who would understand the needs of a athlete.

Also because you are fit and athletic and likely have a clean diet, then the liver and cholesterols are all down to your low thyroid.

I had fatty liver, high and low cholesterols, low kidney, likely had insulin resistance so basically metabolic syndrome. Now all my iffy bloods are normal. Finally my since bootcamp and having to up my T3 dose some of my ongoing symptoms are lessening.

Joaniepig profile image
Joaniepig in reply tosparkly

I have a follow up on Wednesday so I’ll see what they say 🙏🏻 do you still take levothyroxine too or just t3?

sparkly profile image
sparkly in reply toJoaniepig

No, I can't take thyroxine, did well initially but then felt like I being poisoned. Been on t3 only about 10 years.You mentioned hrt. Could you be in perimenopause now? For some ladies thyroid and perimenopause can be difficult, I hold my hand up to this. Your sex hormones can play havoc with your thyroid hormone and so both issues need to be addressed.

I'm so shocked at your shbg level being fit and athletic would usually increase levels, like your testosterone. That should be higher too due to exercise.

Something is a miss and needs looking into properly.

I saw an amazing private Endocrinologist who specialises in perimenopause/menopause and is T3 friendly but sadly I know she is not taking on new patients till middle of the year. I can PM you her name if you wanted.

Joaniepig profile image
Joaniepig in reply tosparkly

Yes please

jgelliss profile image
jgelliss

I found that carnitine lowered my thyroid meds. It took me a while to figure it out. But one I removed it my thyroid meds rose. Sometimes some nutrients don't work well for patients that are on thyroid meds.Best wishes.

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