It’s so long ago since I felt like me I’m not sure I know when it all began but here goes…
In 2003 I was diagnosed with depression following a traumatic incident. I was prescribed fluoxetine which I took for many years without problems. In 2013 I felt like I was losing my mind, a relapse in my mental health was assumed but I had also noticed a swelling to the front of my neck and weight gain. I made an appointment with my GP who did tests and concluded I had hypothyroidism. He reluctantly put me on replacement medication levothyroxine 50mcg. I can’t say I’ve ever felt 100% since. I was referred to an Endo specialist when I was pregnant with my son in 2018 who stated I am a poor T4 to T3 converter but I have still only ever been prescribed levothyroxine. Oh and in 2016 I was diagnosed with a type of bipolar disorder; Cyclothymia and put on antipsychotic meds. I’m not entirely convinced this is not a coincidence and connected in some way. Anyway, back to the thyroid issues….I’m now on a dose of 350mcg daily and yet I still feel like rubbish! I have little energy/motivation but have really tried to do more exercise and I’ve given up smoking. I am constantly tired and feel like I’m wading through water/resistance on the simplest of walks. I am experiencing breathlessness upon exertion not associated to my asthma. My hair is corse
, nails are brittle, my skin is so dry and sore and I’ve piled so much weight on despite attending a slimming group and following a healthy diet and I’m now experiencing excruciating pain in my lower back due to the excess weight I’m carrying presumably. I’m currently awaiting a referral back to the Endo specialist but honestly, I am at the end of my tether……I can see no way out of this hellish existence and do not know what I have to do to make the drs in charge of my care listen to me. Any information/advice would be much appreciated if you have been in a similar situation to myself.
Written by
Owlbeok
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Prepare for lots of information and advice - to offer you the best advice you will be asked lots of questions.
Have you ever obtained your results and monitored your own results ?
Most of us don’t - until we are unwell or come to stage when we want more done to help our health.
1st step contact your practice & ask for copies of blood tests - or see if you can set up access online.
You know from a specialist you are a “poor converter”. This might explain why you are on quite high dose of levo.
You likely have high level of FT4 (free thyroxine) but because your body doesn’t convert it to FT3 you still only have a low level of FT3 ( free triiodothyronine).
Every cell in your body need FT3 it’s the active hormone. So now we need to know what (both) your levels are & how poor is conversion. & why this might be.
Sometimes having optimal nutrients such as folate. Ferritin vitamin D & B12 can help conversion. So you need to see if specialist tested these. Optimal is not same as in range. Sometimes doctors don’t test FT3 & don’t test any / all nutrients & there are private options if your tests aren’t complete.
Do you have stomach issues? It might be that you have absorption issues so this would also explain why you’re on a higher than average dose & would also explain if nutrients are low.
First step to look If your FT4 is top part of range & nutrients optimal. If FT3 remains low there’s additional options.
So comparing thyroid levels you FT4 has doubled since dose increase but FT3 has only risen a fraction. This does show poor conversation. Above range FT4 isn’t ideal and TSH still above range.
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.
UK GP practices are supposed to offer everyone online access for blood test results
Unfortunately, there is neither app nor online access to blood test results in Northern Ireland, Scotland and Wales.
There might be some surgeries, some special arrangements, some trials, which provide that to some not in England. But, in general, they do not have online access.
I’m currently awaiting the results of private bloods done for TSH, FT3 and FT4 for February 23 due to still waiting to see the Endo specialist and feeling worse not better than Dec 22 following the increase in my levothyroxine.
Regards to the brand of levothyroxine, this often changes with each prescription.
The accepted conversion ratio when on T4 monotherapy is said to be 1 - 3.50 - 4.50 -T3/T4 - with most of us feeling at our best when we come in this little ratio at 4 or under.
So to find how well you are converting the T4 into T3 you just need to divide your T4 by your T3 and I'm getting yours coming in at 5.31 - so way out from centre point, a compromised conversion, a struggling thyroid and body and a very slowed metabolism.
When metabolism to running too fast as in ' hyper ' or too slow as in ' hypo ' our body struggles to function in so many ways - one of which is digestion and absorption of key nutrients to keep us healthy.
We need a strong core strength for any thyroid hormone replacement to work optimally and to this end ferritin, folate, B12 and vitamin D must be up and maintained at optimal levels to support conversion of T4 into T3.
However your conversion is not marginal but significant and you will feel much better when these two vital hormones are more evenly balanced.
It's not a question of dropping some T4 - as I guess you are near the top of the range - as this will likely lower your T3 in the process as it is too low a T3 for you that gives you all these symptoms that you are dealing with.
What does the endo plan to do - is s/he a new one - or this same person as in 2018 ?
I’m still waiting unfortunately so I’m not sure if it will be the same one or different. Have been waiting since October 22 and have been back in touch with GP but been told I have to wait until 6th March before they can chase up if I’ve not heard by then that is. I was also told cancer patients take presidence when I complained about the long wait 🤷♀️
OK - so you are in the NHS system and still at the same hospital/endo department as in 2018 :
Whereabouts are you ?
I ask because currently obtaining anything other than T4 - Levothyroxine through the NHS is mission impossible owing to ICB/CCG financial restrictions rather than medical need.
And why many of us, myself included are forced into self medicating and buying our own thyroid hormone replacement.
It's not ideal - I know - but I found fighting the system back in 2017/18 exacerbated my symptom so much I jumped shipped and now DI for Myself and much improved.
However - I'm not in your shoes and am with Graves and post RAI thyroid ablation in 2005 and became very unwell in around 2014.
If you want to read around anyone's profile / history - just press the icon alongside their name and this will take you to their profile page.
Conversely after a day or two if you come on and want to find your previous history simply press on the icon top right on this screen which says " More " and go to your profile page where you can reread everything you have ever written on this forum.
If you go into openprescribing.net and then into analyse you can see by surgery and area how supportive your area is in prescribing either T3 or NDT.
Just put Liothyronine or Armour ( brand of NDT the NHS are meant to prescribe ) )into the drug search bar - at least you may get some comparisons- surgery to surgery - though we can't actually find out by name the doctor writing the prescriptions in primary care unless of course it's a single handed practise, which I think now, probably quite unusual.
Just a thought since you have Hashimoto's - if it hasn't already been mentioned - many forum members find the research of Dr Izabella Wentz helpful :
I've been reading your post as things have evolved and obviously it will be interesting to see how much difference there will be when you take the medication away from other medications etc.
It's alarming your endo hadn't picked up on this point and needs discussing and I would also ask if they have any intention in actually helping you and can you be considered for a trial of T3 - Liothyronine alongside a reduced dose of T4 - Levothyroxine.
I'd not suggest NDT as that's known to be harder to get prescribed - and likely not taught in medical school any longer so unless this endo is aged over 80 probably never even heard of Desiccated Thyroid Extract.
please always add ranges (figures in brackets after each result)
Vitamin D levels look low in this old test
Folate looked deficient
Will wait to comment on these when you add new results
What vitamin supplements are you currently taking
High thyroid antibodies confirms autoimmune Thy thyroid disease also called Hashimoto’s
Have you had coeliac blood test
Or are you already on strictly gluten free diet?
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first
GP should have done coeliac blood test at diagnosis of Hashimoto’s…..as per NICE guidelines
or buy test online for under £20, just to rule coeliac out first before cutting gluten out
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% Hashimoto’s patients find dairy free beneficial
Regards to the brand of levothyroxine, this often changes with each prescription.
You need to pay close attention to brand levothyroxine
Work out which brand suits you best and the always get that brand at each prescription
which brand are you currently taking
Do you take levothyroxine waking or bedtime
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
Northstar levothyroxine being phased out this month
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
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
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
I’ve just checked and my current prescription of levothyroxine is the accord brand but I know I have had northstar previously and also wockhardt brand at some point.
Yes that is correct and no I take all my medications together on an empty stomach in the morning. I didn’t know I was supposed to take the Levo separately to the rest.
So the guidelines are that likely necessary daily dose levothyroxine is approximately 200mcg per day
Your GP should have asked you how you were taking levothyroxine when dose kept being increased
So you may find that you can reduce dose levothyroxine SLOWLY, once you start taking levothyroxine correctly
Only reduce by 25mcg per day maximum…..as Accord don’t make 25mcg …..you can cut 50mcg tablets in half to get 25mcg …..get a pill cutter or sharp craft scalpel to cut in half and a weekly pill dispenser too…..so much easier to remember daily dose…..and keep spare 1/2 tablet for next day
Let’s see what new test results show as to where Ft4 and Ft3 are first …..
Always start a new post with any new information, so all forum members have an opportunity to read, reply and support you.
We generally tend to answer as fully as possible on the first day of a new post and rarely have time to ' look back ' if that makes sense as this forum becomes very busy and we try and answer everybody within around 24 hours of posting.
To draw someone's attention back, you do need to ensure that in your reply to them their name appears when you reply and you press on their ' reply button ' :
It seems incredible that you had a ' so called ' specialist, an endocrinologist, acknowledging that you are a poor converter of T4 into T3 - and did nothing to help you - as the logical step back in 2018 was to switch you from T4 monotherapy to trial other thyroid hormone replacement treatment options.
Some people can get by on T4 - Levothyroxine only :
Some find they feel their health restored better taking a little T3 - alongside their T4 :
Whilst others can't tolerate T4 at all and need to take T3 Liothyronine only:
Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland - namely trace elements of T1. T2 and calcitonin plus a measure of T3 and a measure of T4 .
NDT is derived from pig thyroid which are dried and ground down into tablets referred to as grains and used successfully to treat hypothyroidism for over 100 years prior to Big Pharma launching their T3 and T4 synthetic treatment options.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T3 is said to be around 4 times more powerful than T4 ;
T4 is basically inert, and needs to be converted by your body into T3 the active hormone that runs the body and the thyroid a major gland - the body's engine - and responsible for full body synchronisation which includes your physical, mental, emotional, psychological and spiritual ell being, your inner central heating system and your metabolism.
When I first trialled T3 alongside my T4 it was as though my pilot light had been repaired / replaced and the crushing heaviness of head I ' lived with ' simply lifted - and it was simply that " light bulb moment " one reads about - and I felt and saw much clearly that something was now working for me.
The adrenal glands pick up the slack when the thyroid and body are struggling to function :
The adrenals sit just above your kidneys in your back and when I started my research into my health issues I immediately thought I should start taking an adrenal glandular as I had a very very heavy ache in my back that wasn't eased by conventional pain killers.
It seemed I got this bit right first time as after around a month the ache was bearable and as I continued with this supplement the backache eased up and faded - though I still to this day take an adrenal glandular supplement.
Anyway - first and foremost we do need to see some current blood test results so we can offer constructive thoughts and get your health ad well being back on track.
You maybe the recipient of too much information over the next day or two, as your symptoms are so typical and very many of us have, and are, wearing the same T shirt. and prescribed dubious alternatives rather than what we actually need.
yes and I take all my meds together in the morning
Then this is HIGHLY likely causing significant issues
Suggest you move taking levothyroxine to bedtime immediately
Must be at least 2-3 hours after large meal
And only water for at least an hour before bed
Thyroid dose
Wait to see what latest thyroid results show …..but likely to need to REDUCE dose levothyroxine a little….when you start taking levothyroxine correctly as absorption likely to increase…..perhaps significantly
Yes you must take your thyroid meds first thing with water and wait at least 2hrs before you have any milk products or other meds. I'm a huge anxiety sufferer and my antidepressants have messed up my thyroid so I take them at least 4hrs apart. Try and always take your antidepressant at the same time every day and never miss a dose or up/reduce the dose without advice. Unfortunately this can really play havoc on your thyroid.
Just emailed for the list. Will get tested for the vitamins/coeliac in the meantime and look into gluten free diet where indicated. Thanks so much for all your advice. Really appreciate it.
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