Correct dosage of levothyroxine but still exhausted

[Cdef0123]

Hi, I have been on Levothyroxine for two years. Still feel so tired that some days I literally struggle to get out of bed. Had all the relevant blood tests which doctor said are normal. I feel so desperate as don’t feel comfortable speaking to doctors now as I am starting to feel like a hypochondriac. Does anybody else have same symptoms and can anyone help with advise.

[AnnaSo]

Hi cdef, we’ll need you to pot your result as what doctors consider “normal” is not always necessarily normal at all. Do you know if you are Hashi?

[Cdef0123 in reply to AnnaSo]

Thankyou for all the advise it really is appreciated. Think I need retesting.

[Cdef0123]

Hi Anna,

Not sure . Don’t know much about my diagnosis only told I had underactive thyroid and was prescribed 100 mcg . Had 1 set of blood tests since.

[Cdef0123 in reply to Cdef0123]

Think I need to gain more knowledge of this condition as it seems to me to be really complex , thankyou.

[Aurealis]

The range for thyroid tests is quite large and each person has to get to the place in the range where they feel well, their optimal level. The tests are only useful to check where the persons ‘set point’ is. The conversation to be had with your GP is not about test results it’s about the failure of treatment to restore health. Being in the range is irrelevant - you are being treated to restore health and the best guide to how this is going is how you feel not what your tests results are. Expecting appropriate treatment does not make you a hypochondriac. It’s best if your GP agrees to increase, but if not do it yourself, as long as a test has recently been done on the current dose. If not get one done. And if necessary get a new GP, preferably one that treats patients not blood test results! Good luck

[Cdef0123 in reply to Aurealis]

Thankyou for your support. I really feel more determined now people have kindly taken the time to assure me that there maybe an underlying problem and there is help out there

[cjrsquared]

If you have been underactive for 2 years with only one set of bloods, you are unlikely to be on the correct dose. Your gp sounds almost negligent. Go back ask for another blood test, also find out if thyroid peroxidase antibodies were tested for last time in order to find out if your hypothyroidism is hashimoto’s disease, an autoimmune cause. Remember to get bloods taken as early in the day as you can, fast before only drink water and delay taking your levothyroxine until after the test.

Try asking your doctor to test ft4 and ft3 as well as TSH, but he/she may not. Once you have new results post them on here with the ranges and then hopefully you can start to regain some health. Good luck

[Cdef0123 in reply to cjrsquared]

Thankyou for taking time out to reply. My knowledge of problems associated with the thyroid is obviously very limited. Think I need to seek another Doctor as my current one seems very disinterested in my problems. Thanks again.

[Supernovae]

Hi Cdef0123

Sorry you’re feeling so awful, your GP should be being helpful not making you feel like a hypochondriac. My GP has told me for years that my results were fine, happy to label me tired all the time, but now I have access to my records I can see that I’ve always been undermedicated! Sounds like it might be the same for you.

If you get your results, the surgery is obliged to give them to you, and post them here you’ll get some really helpful advice.

[Cdef0123 in reply to Supernovae]

Thankyou for replying. Obviously I am not on my own suffering these awful bouts of exhaustion. Will return to Doctors for some blood tests

[shaws Administrator]

Avoid doctors who state your blood results are 'normal' when you feel anything but normal.

Nowadays 'modern' doctors do not know any clinical symptoms and it is these which should be the priority of relieving, which can only be done with an optimum dose of thyroid hormones - there is a variety but they will only prescribe levothyroxine but it has to be an optimum dose i.e. a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the range.

Always get a print-out from now on of your blood test results with the ranges. We are entitled by the Law to get them. Some surgeries charge a nominal sum for paper/ink. You need to have a record.

First, all blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. This helps keep the TSH at its highest as that's all doctors look at. They know no clinical symptoms or treat due to them.

The only correct dose is one that removes all our clinical symptoms makes us feel we have normal health and can go about life as normal and not feeling unwell.

Your GP will not do all of the tests but you can ask him. If he or lab wont we have several private labs that do home pin-prick tests and if you decide to do this make sure you are well=hydrated before blood draw.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. GP should certainly test B12, Vit D, iron, ferritin and folate. All have to be optimum not just 'in range'.

Always get a print-out of your results and you can tick off your clincal symptoms:-

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

[Cdef0123 in reply to shaws]

Thankyou for your advice. Seems that my doctor has not been very helpful. With your advice, I feel more confident in returning to Doctor

[SlowDragon Administrator]

Time to get bloods retested then.

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

low vitamins are extremely common when hypothyroid, especially if you have autoimmune thyroid disease diagnosed by high thyroid antibodies

See GP and request Thyroid and vitamin testing

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

[Cdef0123 in reply to SlowDragon]

Thankyou so much for the valuable advise.

[SlowDragon Administrator in reply to Cdef0123]

How much Levothyroxine are you currently taking?

Is it always the same brand?

You are legally entitled to printed copies of your previous blood test results

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Cdef0123 in reply to SlowDragon]

Hi,

Not sure if you received my response. Checked my Levothyroxine and have received two different manufacturers, one is Mercury Farm’s the other TEVA. I take 100 mcg . Will different manufacturers make a difference to how my body accepts the drugs . Thanks again for your kind help

[SlowDragon Administrator in reply to Cdef0123]

Absolutely yes, especially as one is Teva

Hundreds on here have reacted badly to a Teva

healthunlocked.com/search/p...

Take Teva back to pharmacy and ask for Mercury Pharma brand instead as you can't tolerate Teva

If pharmacy won't exchange, ask GP for urgent new prescription to replace Teva due to bad reaction to Teva brand

Also put in yellow card

yellowcard.mhra.gov.uk

[HLAB35]

I'd definitely go along with Slow Dragon and I recommend private testing if GP takes ages to get act together. You may post results on here and we will be able to help you figure out what is causing this disabling fatigue. There are so many factors involved with hypothyroidism that a quick 'take this Levo to fix it' simply won't wash! I think, that in addition to thyroid hormone, antibody and vitamin checks, it'd be good to check for inflammatory markers. If inflammation is high, you may continue to struggle on Levo, because Levo needs the perfect environment to do its job properly ... inflammation is the enemy!

""Inflammation causes HPT axis disruption, decreased receptor function, and decreased conversion of T4 to T3. Thyroid medication only increases the levels of thyroid hormone (usually T4) in the blood. No matter how much we take, it’s not going to restore HPT axis coordination, improve receptor function, or increase conversion of T4 to T3.

The only way to do that is to address the problem at its root by regulating the immune system and decreasing inflammation. Unfortunately, this is rarely done in either conventional or alternative treatment of thyroid disorders."" taken from the following link, below.. which explains...

chriskresser.com/three-reas...

[lelin]

Dear Cdef0123,

Probably, you should add liotironine(T3) to your treatment regime.

Lel