Apologies if this is a bit of a long post! Hoping to give as much info as I can in case any of you can offer me some advice.
I had a partial thyroidectomy (two thirds of thyroid removed) overseas 13 years ago, after developing intrusive goitre, antibodies, after pregnancy. Been through the mill a bit with it all since then....at first was told I didn’t need any thyroid medication. Felt very ill after op, was eventually given levothyroxine after a few weeks. I continued to feel very poorly, massive weight gain, couldn’t climb the stairs, hair loss, difficulty speaking, brain fog, falling over.
My husband and I started doing some research and I ended up taking ndt. This made an unbelievable improvement to my health, weight loss etc. I then changed to t3 only which had an even better effect.
The T3 was prescribed to me in the country we were living in. I wasn’t completely well on it, but largely felt I had a good quality of life. We moved back to the UK 3 years ago, and the gp I registered with told me that t3 was a blacklisted drug here and that I would have to be weaned off it and onto T4. This was done over a few weeks. At around the same time I became very depressed (lots of reasons, difficult move etc) and was prescribed sertraline.
I gained access to my medical records a few months ago and discovered that when I registered with the gp, they had consulted with the hospital endocrine department about my t3 use. Hospital told gp that as I was functioning well on the t3 it would be best to keep me on it, but the gp didn’t pass this info on to me and instead moved me to t4.
I asked to be put back on t3 a few months ago after seeing my records and was referred to hospital endo. He was reluctant but agreed to introduce a small amount of t3.
He reduced t4 to 50mcg from 75mcg, and added 10mcg of t3. I felt an improvement from this, but it was like a boost that was very short-lived.
I have a lot of symptoms:
Weight keeps on increasing - I am over 3 stones heavier than I was when I stopped t4.
I have been pushing myself so hard to exercise - it’s not making a difference.
I often have extremely painful joints, hard to move.
My resting heart rate is 50bpm average. I have ringing in my ears and dizziness sometimes.
Brain fog. Words coming out wrong.
Swollen face and joints.
Clumsy. Falling over. Bumping into things. Legs giving way. Bruising easily.
Fall asleep sitting up early every evening.
Some days I am so totally exhausted it is soul destroying. I am in pain and incapable of doing things. When I speak I’m not sure if I’ve said the right word - I’ve heard what I’ve said but can’t remember if it’s right or not (if that makes sense!).
I have a telephone appointment with endo tomorrow afternoon. I know I should be able to feel better than I do.
I’m 51, mid menopause and these are my test results from a few days ago. I didn’t take that day’s medication until after test, which was at 9.30am.
Current daily medication: 50mcg t4, 10mcg t3, 100mcg sertraline
I was hoping tests would show that something was amiss, because I feel so rotten. Can anyone give me any insight into those results, or anything I should be asking the endo.
Sorry for the rambling post!
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beryltortoise
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I'm sorry you are having such a rotten time. Good news: you have been prescribed lio. Bad news - you're horribly under-medicated - and this is why you feel dreadful, you can't lose the excess weight, and you still have a whole host of hypo symptoms.
Most people on thyroid meds need their TSH to be low, and once on lio it is almost always suppressed - so please don't allow your endo to say that because yours is at the lower end of the reference range you MUST be feeling fine.
Because we also usually need our free T4 and free T3 to be at least in the top third of the reference range - sometimes the top quartile, and personally I like mine right near the top. Your free T3 is creeping along at only 13% through range - and your free T4 is actually under-range. Please note you are only over-medicated when your free T3 is over-range .... so you're a very long way from that!
You should also ask to have your key nutrients tested. Doctors don't get taught about nutrients, but you will see lots of posts - and lots of info - on here about them. You need ferritin, folate, vit D and B12 testing. Your thyroid meds work best when these are optimal. If the NHS won't test them, you will see lots here about private blood testing.
Sadly, a lot of doctors treat female patients as stupid, hormonal and irrational - especially if we're menopausal - but behave much better if we can bring an adult MAN to an appointment - or a phone appointment on speaker phone - so if you can have a husband or friend who can mention how much you health has deteriorated over the last few years, that may be helpful.
PS lio isn't blacklisted, but it can only be prescribed by an endo - and not many do, because its viciously expensive in the UK, and because it has a much shorter half-life than levo, it's harder to measure and manage - so not very many of us who need it actually get it on the NHS.
Hello fuschia-pink. Thank you very much for your reply. I’ve asked my husband to sit in on the call tomorrow. You’re absolutely right to suggest having someone else there - it’s so frustrating and upsetting to be patronised by doctors, and I’m sad to say that I know how this feels.
I’ll request the 4 nutrient tests tomorrow and see what happens!
Make sure you introduce your hubby at the start too so they know. I was refused by endo on my own for two years, ruled out everything In rmoc guidelines. Took hubby didn’t have to even beg it was offered up. Coincidence?? Who knows.
And you are not going mad. Levels very low. Get other bits tested too as really makes a difference. Get oestrogen checked too as my hands get painful when it’s low.
Can you put your phone onto speakerphone? If so then when your phone consultation begins I would make a point of saying something along the lines of because you feel so desperately unwell, your husband is with you, your phone is on speakerphone so he may chime in if you forget to mention anything, and that you are recording the phone call so that you can listen back to it and fully digest and understand everything that has been said as in your present state you're sure you won't be able to remember everything.
I gained access to my medical records a few months ago and discovered that when I registered with the gp, they had consulted with the hospital endocrine department about my t3 use. Hospital told gp that as I was functioning well on the t3 it would be best to keep me on it, but the gp didn’t pass this info on to me and instead moved me to t4.
I would be taking this up with the GP concerned and asking why he didn't follow the endo's advice. By ignoring it he has made you very ill and I think this is worthy of a complaint at the very least.
All the symptoms you mention point to you being undermedicated and your results back this up.
The aim of a treated Hypo patient on Levo only is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
When T3 is added to Levo, we tend to see a low TSH, often suppressed, with a lowish FT4, and patients generally feel best when FT3 is in the upper part of it's reference range. Your results show the expected low TSH but your FT4 is below range and your FT3 is just 13.33% through range.
So if you stay on your combination of Levo plus T3, your FT4 needs to come back into range (where you need it is trial and error) and your FT3 needs to be much higher, possibly around 5+
As you have had evidence that you did well on T3 and that it was recommended that you stay on it, I would push this point and fight to get back onto T3 only if you'd prefer that to combination hormone replacement. T3 is not blacklisted, it's just that it's expensive and they don't like having to pay for it, but chemo is also expensive but would then deny a cancer patient their treatment?
I have been pushing myself so hard to exercise - it’s not making a difference.
Stop. Exercise depletes T3 and you have so little of it anyway and it's not being replaced by enough thyroid medication. Gentle exercise like walking or yoga is about all you should be doing at the moment.
Presumably sertraline has been prescribed for depression? Depression is a symptom of hypothyroidism, if you were optimally medicated you probably wouldn't need it. Were you taking it when you were on NDT or T3 only? If not, then I'd say it's a safe bet that your depression is entirely due to your undermedicated hypothyroidism, get your levels right and you wont be suffering from depression.
Are you aware that sertraline has been associated with a decrease in the effect of levothyroxine? So when taking sertraline it's often the case that levothyroxine needs to be increased.
It's also important that we Hypos have optimal nutrient levels, if not already tested then ask for the following:
Vit D
B12
Folate
Ferritin
Come back with the results, reference ranges and unit of measurement for both Vit D and B12 and we can comment further.
Good luck with your appointment tomorrow, please let us know how it goes.
Thanks Susie. I did know there was a link between depression and hypothyroidism - at the beginning of my illness before the ndt and t3 I was very low and irrational, mentally affected as much as physically. I didn’t start the sertraline until I was being weaned off the t3 and onto t4. At that point I was feeling very broken and isolated and just accepted the sertraline because I was told I had to go onto t4. Thank you for all your info. I’ll definitely let you know what happens tomorrow x
Well there are " things amiss " with these results - if you look your T4 is below the reference range and your T3 is barely in the reference range, scraping in at around 13 % : most people feel at their best when both these vital hormones are balanced with both results being in the upper quadrant of the ranges.
Your levels are so low, you must be feeling awful and I presume you are dosed and monitored on a TSH blood test result as that's the only one at an acceptable level, and told you are ok and good to go, and given to understand that it's all in your head, and given anti depressants as a consolation prize when you clearly need more thyroid hormone replacement.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. Some people after surgery or thyroid ablation can get by on T4 alone, some people simply stop converting at some point in time the T4 into T3, and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and into range and to a level of wellness acceptable to the patient.
T4 is a storage hormone and your body needs to convert this into T3 which is the active hormone that the body runs on and said to be about 4 times more powerful than T4 with the average person using about 50 T3 daily, just to function.
Your ability to convert the T4 into T3 can be compromised if you do not maintain ferritin, folate, B12 and vitamin D at optimal levels and this will be an area that needs checking out as you maybe in the range, but not at optimal, high enough levels to maintain your core strength and support your thyroid function.
Thyroid uk hold a list of " friendly doctors/endocrinologists" who are open to prescribing NDT and T3 but within the NHS system it's becoming increasingly difficult to have either of these thyroid hormone replacement options prescribed.
There are many of us on here who have resorted to buying our own thyroid hormone replacement and self medicate, as the advice found on this website is second to none.
I was where you are a few years ago, when I came on here looking for help, and it's a massive learning curve as you do need to be your own best advocate.
I tried the NHS route first but ultimately I was refused a trial of T3 by the endocrinologist and have gone on to self medicate for myself. T3 added to my T4 worked, my brain became immediately switched on again. I have now moved over to taking NDT as I find this suits me better, having had my thyroid ablated in 2005 for Graves Disease and I now manage lingering Graves, thyroid eye disease and hypothyroidism.
If you look up - openprescribing - and go into analyse you can see by CCG area and or surgery , how easy it may seem to be able to obtain these vital hormones in your area through NHS channels : just put in Armour for NDT and Liothyronine for T3 in the drug box.
It is a deplorable situation, made even worse for you, having seen an endocrinologist who stated you would be better placed to stay on T3 and then your doctor chooses to ignore the specialist. Your doctor does not know more than the endocrinologist and his decision to stop your prescription simple despicable, and cost rather than health driven - whatever happened to that oath " first do no harm " ????
One book that may help you get a handle on things :- written by a doctor who has hypothyroidism, Barry Durrant - Peatfield - Your Thyroid and How To Keep It Healthy :
You'll also learn a lot simply reading other people's posts and answers, it does sink in, eventually, believe me.
Hi pennyannie. Thanks very much for your reply and encouragement, and for sharing some of your experiences. I will look on Thyroid UK and also for the book. X
I just wanted to collectively thank you all for taking the trouble to reply to my post so quickly, with so much helpful information and advice. Reading your replies has made me very emotional - it’s so helpful and encouraging to read you all saying ‘well of course you feel rubbish, you’re under medicated’. It’s an awful feeling to not feel well and just keep trying to tread water, drowning some days, thinking this is the way it has to be. I feel acknowledged, and that there might be a light at the end of the tunnel.
Do any of you have any info on the resting heart rate of 50bpm? Is that something that should be taken seriously by endo / gp? I’ve been tracking it for 2 months with a smart watch.
I will let you know what happens tomorrow afternoon!
Hi there. So sorry you feel so bad, but following the advice above I’m sure will start to see you on the right tracks.
Resting heart rate: I read somewhere, although I now cannot remember exactly where, that being undermedicated slows heart rate down. Makes sense, since thyroid hormones, especially T3, are required to keep pretty much everything functioning. Of course, speak to your endo but I think once your body starts to recover from this (frankly horrendous on the part of your GP) situation, and you feel more alive, resting heart rate will slowly rise. Mine was high 50s/low 60s when I was at my worst and is now around 70, according to my Apple Watch.
The fact is, we have all been there and got several T shirts each and I'm sending a hug.
You've made the first move so well done.
The thyroid is a major gland, your body's engine, and responsible for full body synchronisation, including your physical, emotional, mental, psychological and spiritual well being, your inner central heating system and your metabolism. :
You will come back from this, because we all have - and that's why we are here helping others through all that hypothyroidism throws at us.
Check out on the Thyroid uk website, become a member of this amazing charity, and read of the symptoms associated with hypothyroid, and you will see yourself, and now start mending yourself with a little knowledge : if with the awful brain fog just make a few notes of what you want to ask and get out of this appointment tomorrow - there are some good guys out there somewhere, so they tell me !!!!
Your woefully under medicated, likely to have extremely poor vitamin levels
Levothyroxine dose is ludicrously small and Ft4 is below range
Most people on levothyroxine and T3 combination need Ft4 and Ft3 at least half way through range
Suggest you increase your levothyroxine dose by 25mcg and retest in 6-8 weeks
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, best not mentioned to GP or phlebotomist)
If/when also on T3 make sure to take last approx third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Medichecks - JUST vitamin testing including folate - DIY finger prick test
So as you left 24 hours between last dose and blood test, the ft3 result is a false low....but it’s not likely much higher ....next time you test remember to split dose so that last 5mcg is 8-12 hours before test
Even if we don’t start on full replacement dose of levothyroxine, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Thanks! Those levels and links are really helpful. Using the 1.6 formula with my current weight I would be on 150mcg thyroxine! 125mcg with 10mcg T3 added.
For levothyroxine T3 combination is there a usual ratio?
10mcg T3 is low dose ....often people are on 15mcg as 3 x 5mcg doses split at 8 hour gaps through day... 7am, 3pm and 11pm
Or 20mcg as 10mcg at 7am and 5mcg at 3pm and 11pm
Others prefer to take as single daily dose....every person is individual
Only increase levothyroxine or T3 at any one time. As your Ft4 is below range, suggest starting with 25mcg increase in levothyroxine....retest in 6-8 weeks
Essential to regularly retest vitamin levels and we frequently need to supplement to maintain optimal vitamin levels
Also, in your opening post, you say high antibodies, so presumably high TPO and/or high TG antibodies, this is autoimmune thyroid disease also called hashimoto’s
Hashimoto's frequently 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
He has increased levothyroxine from 50mcg to 75mcg and kept 10mcg T3. He said he won’t be allowed to increase my t3, to do this he would have to apply to a special council, and that they wouldn’t accept ‘being tired’ as a reason to have T3. I got a bit riled at this point because I had already told him about several of my symptoms (not one of them was ‘being tired’). So I read them out to him again. He said I was putting him in a difficult position. He said we’d increase t4 to 75mcg and review in 3 months. I asked if we could review in 6 weeks. He said 6 weeks isn’t long enough, but that we can do 8 weeks. I also asked if I could have Vit D, B12, Folate and Ferritin tested and he said yes.
Thanks so much again all of you who responded to my post. I felt very empowered armed with all your information, and was able to question and push far more than I would have done. Xxx
That’s good news. Push for review date now as they like saying 2 months and appt comes through for 3 or 4 months. If he’s sending blood test form have bloods done at 6 wks. X
I think GP's and Endocrinologists must have a version of the 'babelfish' from Hitchhikers Guide to the Galaxy implanted in their ear when they qualify...... since whatever we say our symptoms are , it get's translated into 'tired all the time' or 'fatigue' ... i've never used the word 'tired' either , but i see it all over my GP history.
Congratulations on sticking up for yourself so effectively, it's a shame we have to put them in a difficult position....... but that's exactly what's been done to us.
Hello again. My GP did a comprehensive set of blood tests and here are the results. Nothing outside of reference range it seems. Is it wrong to be feeling a bit disappointed about that?? Starting back at work next week and am still struggling with exhaustion, awful joint pain etc. She has not spoken to me about results yet.
Thanks in advance if anyone can shine any light on these results. Xx
Can I just say that very few people are going see this update at the bottom of an old post - and it will be in your best interests to have verybody's input and not just mine - so start a new post with the above, just sorry it's so long !!!
Very few people look back at what are considered old posts and that can mean just a couple of days ago - let alone one from a month ago.
Just repost with a brief outline of your situation and people will look back to refresh themselves if they think necessary.
That's ok - you're now top of the leader board - for want of a better description - just hope there are still people around to answer you - I've past my prime for today - will catch up though -
P.S. Just had a quick look and no thyroid hormone replacement works effectively if your core strength vitamins and minerals are not maintained at optimal levels :
I aim for a ferritin of around 100 :
Vitamin D at around 100 :
Folate at around 20 and serum B12 at around 550 :
You will be disappointed as your abilty to convert the T4 into T3 isn't happening because of these less than optimal levels :
I don'r know enough to go through all the rest, so repost as suggested and get further help:
I think the endo should increase your T3 and this special council is absolute rubbish - he's meant to be a medical specialist and there to help alleviate your obvious symptoms of not having a fully functiong working thyroid and needing both T3 and T4 prescribed at levels that will restore your well being.
Do you remember what dose you were on when reasonable well before you returned to the uk and then being given the totally the wrong medication by your doctor ignoring the recommendation of the specialist ?
So angry read what your doctor has done to you - how can he look at himself in the mirror ?
Thank you ❤️. I was on between 50 and 60 mcg t3 only per day. It’s so frustrating, my husband always says not to put up with just ‘treading water’. Fighting your corner is quite a slog when you’re not feeling good.
How do you take your folate, ferritin, b12 and Vit d? Do you buy tablets? What sort of amounts if you don’t mind me asking.
Maybe he needs to go with you to the doctor - I read the treatment can be quite different - when you have brain fog, loosing your words and thoughts, with cognitive functions compromised - how can you be expected to stand up for yourself ?
It is very hard, and in fact, I gave up, as the whole thing exacerbated my symptom :
My ferritin was at 22 and I couldn't tolerate the normal iron tablets so purchased Solgar Gentle Iron, Spatone and started eating liver.
I now keep topped up with Asda frozen chicken livers which when flashed fried in a little olive oil I whizz down and keep in a old jam jar in the fridge. They are very clean and mild and 1 tub a week ticks me over now, as a spoonful a day, with a dollop of mayo helps this medicine go down.
Let's wait and see if you get details of how to build up, as I'm now optimal and on just smaller units of vitamin D + k2 and a B super complex + vitamin C to bowel tolerance:
I also take adrenal glandular and am self medicating with NDT :
I'm with Graves disease and had my thyroid ablated with RAI in 2005 and became really unwell in around 2013/14 and treated with levothyroxine and refused both NDT by my doctor and a trial of T3 by the one and only endocrinologist I have seen in over 10 years since the RAI treatment.
I read that around 50 T3 is the average amount we all use on a daily basis, just to function :
A fully functioning working thyroid is said to support you on a daily basis with around 100 T4 + 10 T3 plus trace elements of T1. T2 and calitonin :
Whilst you can switch from Levothyroxine to T3 relatively easy, I've read that once on T3 only the body doesn't eaily adjust back to T4 - and that it's not that simply :
At the end of the day your endocrinologist suggested you stay on T3 only and your doctor decided to ignore this advice, and your health has declined accordingly.
It's absolutely disgusting and think your husband needs to take up the cause for you :
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