I'm on 175 micrograms tablets levothyroxine one day and 150 the other day for last year and half.
I didn't have z blood test 6 months. I cannot handle, simply cannot take it any longer. I am devastated, as last three months I am so lethargic, weak, that I'm unable to take care of my kids properly, tired all the time and my weight increases uncontrollably, last 3 months I've gained 8 kg. I am unable run house and yet I'm the one with kids while my husband is working, so I have no choice, but to be with them. Last 3 months I became irritable very easily. The best energy I've got only in morning, rest of the day is blurry, as I am on the sofa closing my eyes with no energy left. My husband and older son leave me comments like do something, you again resting? Cannot be that bad! Put yourself together! Why this clothes piling up? Etc etc
I am so fatigued that I'm struggling writing this message as well, I don't know if that's in my head, but I feel that my ability to plan and remember my schedule is very low.
I don't know what to do. I felt like this before, but never gained weight like that previously. However my doctors every time after blood test they just increase or decrease levothyroxine levels and that's it, no further investigations whatsoever.
I feel helpless
Sorry for chaotic post.
Written by
TiredIzabele
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Do you always get same brand of levothyroxine at each prescription?
Which brand?
Are you taking levothyroxine waking or bedtime ?
Always on empty stomach and then nothing apart from water for at least an hour after
Approx age? Often thyroid levels change around menopause
Request GP do FULL Thyroid and vitamin testing
or test privately if you can afford to
Are you currently taking any vitamin supplements?
Do you know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies. About 90% of primary hypothyroidism is autoimmune thyroid disease.
Ask GP to test vitamin levels (and thyroid antibodies if not been tested)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for your answer. I am 45 years old. Yes, I always wait at least 1hr after taking my levothyroxine and of course I eat nothing before taking it.
Brand of levothyroxine is MercuryPharma. I never knew I shouldn't take my medication before bloods and next time I will do that. I take some vitamins, but clearly not all of them.
I will look for private options from links you have sent me. NHS has assigned me endocrinologist, but last appointment I've had was January.
I will read again and again your message and open all those links and explore more. And again I am very grateful for your answer.
If you select an Endocrinologist you can put a name and area on the forum and ask for comments to be sent to you via a Private Message. You will be sent a message and no-one can read it but you.
Do you have any recent test results and ranges you can add?
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
No blood test results recently were done, but I've just managed to book one for 23th of june and I'll share my results with you once I have them. And shockingly they've accepted my request of FT3 as well.
Welcome, Izabele, and I'm sorry things are so grim for you at the moment.
Please get proper testing - either from your GP if s/he will do it, or treat yourself to private tests. You really need: TSH (which the GP will have done before); free T4 (which the GP may have done before) free T3 (which the GP almost certainly hasn't done before) and key nutrients - ferritin, folate, vit D and B12 (which the GP very definitely won't have done before).
Have an early morning, fasting blood test, 24 hours from your previous dose of levo. SlowDragon does a good summary of what private tests are available (some discounts on the main Thyroid UK site) and SeasideSusie does an excellent summary of how best to do a blood test at home. Hopefully both will pop up in a bit.
The blood tests are really important because you are on a good whack of levo but things clearly aren't right. I'd guess that TSH is "in range" (dread phrase) - which keeps the GP happy but you aren't on the right dose of meds for you. Either free T3 (or both frees) are too low and/or the nutrients are poor - and these are the reasons you aren't doing well.
T4 and T3 are your actual thyroid hormones (TSH is just a message from the pituitary telling the thyroid to work harder, giving a higher number, if you are under-active) - but doesn't itself say whether the message is acted on, so you need the other results too. If your "frees" are bad you really don't have much chance of feeling properly well. You can have good free T4 but poor free T3 (showing you convert badly from T4 to T3) but it's T3 which is the active thyroid hormone every cell in your body needs. And the nutrients are important too, because you need these to be at a good level - but nutrition isn't part of GP training so it's not something they test for.
Please also see if you can get hold of your last few blood test results [you are legally entitled to these - "for your records" if anyone asks - and this will show how little has been tested before and where you stood. All too often GPs will only test TSH and this really isn't good enough.
Thank you for your detailed answer, I really appreciate that you took your time to write back.
I've just spoke with my Gp receptionist, apparently today I am going to get call from doctor or clinician and I'm really anxious about results of this coming conversation. For me personally it's always challenging speaking to them. Most of the time they don't seem to listen to what I'm saying .
Izabele You are not alone. All of us on here have had doctors who didn't listen, didn't understand, were uneducated on thyroid issues. That is why we are here,to help each other from our experience and knowledge.I spent 2 years barely able to function, viewing life mostly from my bedroom. It was thanks to what I learned on this site and the advice I got that i have turned my life around.
What I would suggest is that
you make a list of things you want to say to the doctor so you feel you have got your points across.
Always ask for the results of your blood test. Post any results on this site for advice.
When able read as much as you can on here about thyroid - the doctors don't have the knowledge so you need to have it
It's hard but learn to be pushy. We assume that doctors are the experts so we don't stand up for ourselves. Well it is time to get over that idea!
Please get the tests that the others have suggested and post the results.
Something to help explain to family members what it's really like to live with hypothyroidism... verywellhealth.com/when-you... when-your-family-member-or-friend-has-thyroid-disease-
Welcome to our forum and the members are very helpful as we've all 'been there - did that'.
First of all, every human being (male and female) has to have a functional thyroid gland that sends out all our lifetime thyroid hormones that permit us to be healthy and symptom-free.
You can tell your husband etc. that your body, at present is incapable of producing the necessary hormones that enables the whole body to function as normal. Heart and brain have the most T3 receptor cells.
There are two thyroid hormones, T4 and T3 (also called levothyroxine and liothyronine).
They prescribe levothyroxine (T4 only) and it is an inactive hormone and is supposed to convert to liothyronine(T3) but it doesn't always do so effectively.
We, who are hypothyroid, have dysfunctional thyroid glands that aren't producing the thyroid hormones our millions of T3 receptor cells have in our body, the brain and heart need the most.
Those of us who do not do very well on levothyroxine alone some have doctors who have no understanding because many of their patients will take levo and feel fine.
On this forum the majority of members seem not to recover on levothyroxine (T4) but might do so if they're given an optimal dose 'optimal means we feel well again'.
It is a big learning curve for us, but members will come to your aid as most have 'been there - done that'.
I had to diagnose myself and not one doctor or specialist could diagnose a patient with one of the commonest hormone diseases. We are supposed to be diagnosed if the TSH (thyroid stimulating hormone) reaches 10. Mine went to 100 and still no-one diagnosed me.
I found out by chance through someone mentioning hypothyroid to me - it was just a strange word.
You can tell your husband and family that if they had a dysfunctional thyroid gland they would know exactly how you feel as without thyroid hormone replacents our body cannot function as it should.
It is a serious condition if we're not given the correct thyroid hormones we need for our body to function and brain and heart needs the most T3 (liothyronine). T4 (levothyroxine) is an inactive hormone and supposed to convert to T3 (liothyronine).
Also if diagnosed we do not pay for any other prescriptions for any other conditions we may have due to being hypothyroid.
The medical professionals prescribe T4 (levothyroxine) and it is an inactive hormone. It should convert to T3 (liothyronine) and it is T3 which enables our body to function normally, the brain and heart containing the most T3 receptor cells.
Some of us (myself included) cannot recover or feel an improvement on levothyroxine (T4).
Doctors have their hands tied to what they can prescribe and millions do fine on T4. Myself, I cannot - but I take the Active Thyroid Hormone T3 (and it is prescribed) but rarely.
Ask to be referred to an Endocrinologist and hopefully you will get someone who is sympathetic and willing to give you a trial of T4/T3 or T3 alone.
With the assistance of a helpful doctor or endocrinologist we can recover. It might take a little while as we've been becoming hyPOthyroid for a much longer time than you'd imagine. It is a very slow and gradual thing.
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