I don't expect answers anymore but would anyone care to comment on my monitor my health blood tests which I took this week please? Followed advice on here, taken fasting and just over 24hrs since last levo. I take 100mcg levo 5 days a week and 75mcg the other 2. I also supplement vit D3 just in range and magnesium.
T3 3.2 (3.1-6.8) 2.7% in range
FT4 17 (12-22) 50% in range
TSH 0.72 (0.27 - 4.2) 11.17% in range.
I stopped taking T3 in April on the advice of private endocrinologist as I persistently have ectopic heartbeats whilst I wait cardiologist advice. Saw NHS endo since and again await cardio advice but also said no T3 as tsh too low. I have been waiting for an Urgent appointment since April 1st, says it all doesn't it? Did pay a private cardiologist in June who was about as much use as a chocolate ashtray, wants me to take propranolol despite resting pulse in 50s and asthmatic. Anyway gp's still not prescribed despite me chasing his secretary who emailed the dose to my surgery 10 days ago. I generally feel I'm banging my head up a brick wall, being shoved from pillar to post while my health continues to deteriorate, tired but can't sleep, tearful, multiple aches, pains and moaning about my health all the time. Have managed to get Gp appointment for 1 months time this morning but know nothing will be done as I'm waiting consultant opinion. Why won't anyone listen that I need T3 and it needs to be in the upper third not the bottom of range? I'm too scared to self medicate but think it's the way I'll have to go. Thank you for taking the time to read if you've got this far and I am truly grateful for the the support on this forum.
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Thank you Slow Dragon, my last Vit D was taken in the Birmingham NHS endo clinic in July not June sorry, 87.3nmol/L, range >49.9 but still low as I'm taking Doctor's best 1,000iu day, was 2,000 till the summer. I also take same brand VitK2 mk7, was initially reluctant as I'm on blood thinners but apparently ok with Rivaroxaban. Magnesium taurate too at bedtime thought might help ectopics, certainly doesn't help sleep. Previously medicheck vit D result in May was 92nmol/L and ferritin was 254 (13-150), it's always raised but no one is bothered except me though it's said to be inflammation!
I always have Eltroxin Levo as Teva really upset me. No T3 since April, I try to be gluten free but have to admit to not being as strict as I could as not noticed any difference in the last six months or so.
I argued the beta blockers because of my asthma, otherwise I would have tried them years ago but consultant said as I'm not brittle asthmatic they are fine. I also said my pulse is always low 50's at rest and he said as long as it doesn't go to 30 it's ok! He was so blaise, said his pulse was in 60's, no help to me was it? Recently read a good article on here, Low T3 Hormone, cardiovascular effects, wish he would read it too, got it printed for the next appointment with anybody.
Vitamin D….1000iu unlikely high enough dose….as shown by levels dropped. Perhaps 2000iu all year … or higher in winter…….test Sept and Jam
You need to test folate and B12
I was on propranolol almost 20 years….it actually improved low heart rate ……Propranolol slows uptake and conversion of levothyroxine……makes inadequate dose levothyroxine go further…more on my profile. Even now my pulse very low (often drops under 45 at night)
Thank you again, my iron was checked initially to exclude haemachromatosis and was fine, I could recheck myself I agree though. I will up my vit D again, have some 2,000 in still, gp said to drop to 200 as it was in range, good job I ignored her. Folate was 6.91 (>3.89) and B12 130 (37.5-150) in May so not been concerned about those. I think I'll get back on to gp's after the weekend, make myself a nuisance and get them to prescribe the propranolol which was advised in July, give it a go, hopefully, like you, it may help. I can't go on like this I just want to crawl up a corner, sleep and wake up feeling better. I wish eh?
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Thanks yet again, just looked and I have the Thorne Basic B complex in, obviously stopped them for a blood test and never restarted so I can tomorrow. I think I stopped when on T3 as I found it hard to get the timing of it and vitamins in the day with all the times that need leaving between, I think I was getting confused, paranoid or both x Don't know if I ever had Hashimoto's, I was initially hyper, 2 episodes of medication then radioiodine as it returned, never tested for the MTHFR gene either sorry, is it worth testing now? I might recheck iron myself but it's so annoying having to self-fund, I'm sure diabetes patients don't.
Some of these medics should not be let loose, with a stethoscope, amongst unwell and concerned patients.....they lack both empathy, understanding and crucially, thyroid knowledge.
Your FT3 is abysmally low....but I won't rant on because you understand the problem
Forget TSH...it's not a reliable marker after treatment is initiated.....
But try getting a medic to understand this......scream!!!
Your T4 to T3 conversion is poor causing low FT3
I expect you are working to optimise vit D, vit B12, folate and ferritin to support thyroid function/ conversion
You are absolutely correct you need T3!
Many of us self medicate....I need a huge dose....my bones are fine and a recent heart scan shows perfect function.
My GP thought I was going to kill myself ....but I had already done my homework so could respond to her scaremongering.
My surgery leave me to it now and I update the GPs occasionally. know I'm fortunate with that.... but like you and others very unfortunate to have no NHS backing.
It is madness.
Low T3 - undermedication - will cause more problems that an adequate dose.
I'm not a medic but I'd stick my neck,out and say your ectopic heartbeats are very likely caused by low FT3....the heart needs a lot of T3!!
Making the decision to self medicate is the hardest part, once that is achieved the journey has started and you use all the knowledge you have gained to make informed decisions about the way forward.
Only you can make that decision.
This may help...note the late Dr John Lowe's contribution re T3
Thank you, I know I will have to make a decision re self-medication soon, I do still have some T3 left from before. I did see a professor privately but stopped when he said Levo only as it seemed a waste of money, hence getting referred on the NHS to Birmingham, both unfortunately were obsessed with low tsh, even the professor who put me on T3! Maybe I should have just persevered with it. I definitely think my ectopics are low T3 related but also stress anxiety wasn't helping so I don't know really. I'm just worn out trying to get someone to listen. As I said to SD there is a good article by thyroidpatients.ca which I have printed off, this clearly shows the link. That's a good article too thank you, I'm not a medic but a recently retired nurse prescriber but I definitely understand more about my thyroid or lack of it than I ever did when practicing.
I really hope all is not lost as I feel I am just existing in some chaotic way and not living and enjoying what I have.
That's great Iwishmine did but when I was on T3 though I felt better the ectopics seemed to get worse. I really wonder if it's stress and anxiety too as they're worse this evening. I know they're harmless but they're so uncomfortable as you know. I really need to retry because my levels are only just above the bottom x
Congratulations - your TSH is in range for once - but what of your health and well being ?
The TSH once on any form of thyroid hormone replacement is not a reliable measure of anything - it was introduced as a diagnostic tool to help identify a patient suffering with hypothyroidism and never intended to be used once the patient was on any form of thyroid hormone replacement.
Graves is an auto immune disease for which there is no cure - and having had one's thyroid removed or burnt out in situ simply flips the patient from what is seen as a life threatening health issue requiring hospital management into , likely, a life limiting health issue seen as better managed in primary care.
Once a Graves patient - always a Graves patient - and the TSH must not be seen as a marker for anything especially in Graves patients as we can still have Graves antibodies ' stuck onto out TSH receptors sites ' years later as there is no way of removing them pushing down the TSH reading and what originally caused your diagnosis, BUT now there is no thyroid there to ramp up, it's considered to be a job done from the hospitals perspective.
Everyone's journey with Graves is unique to them but see likely stress and anxiety from your first husband's death a trigger for your diagnosis, though Graves can just occur ' out of the blue ' and there is said to be a genetic predisposition, maybe a generation away from you, with someone with a thyroid health condition.
Obviously finding one's triggers is important as one needs to see a way forward that is less stressful which sadly, trying to get treatment for primary hypothyroidism after RAI thyroid ablation seems only to fuel one's unwellness.
Sorry - my laptop cut out ?
The thyroid is major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and these 2 vital hormones need to be in balance, at around a 1/4 ratio T3/T4 if on T4 monotherapy.
We generally feel at your best when our T4 is in the top quadrant of the range as this should reflect in a good level of T3 at around the mid ' 5's ' :
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 - with T3 said to be around 4 times more powerful than T4.
Some people can get by on T4 - Levothyroxine.
Some people find T4 seems to stop working after a while/possibly years later, and fnd that by adding back in that little bit lost when their thyroid was disabled for whatever reason, does the trick and well being restored.
Some people can't tolerate T4 and need to take T3 only - Liothyronine.
Some people find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the huma gland and derived from pig thyroid dried and ground down into tablets referred to as grains and the original treatment for primary hypothyroid and used successfully for over 100 years.
Up until around 2000 all these options were in your doctors ' box of tricks ' to play with as he saw fir - sadly 20 years on the only game he can attempt to play is treating you with T4 and offering anti depressants.
Sorry - lap top cut out again - and have lost my train of thought but put my kettle on !!
We now have a couple of research papers confirming that we likely feel worse for wear having been treated with RAI thyroid ablation for Graves Disease though believe it is still offered as the first and only treatment available.:
So, I too am after the Graves diagnosis and RAI thyroid ablation and it was all 10 years too late for me, when I started reading up as to why had it all gone so wrong, but I have managed to get back on an even keel self medicating and ignoring my TSH and am taking Natural Desiccated Thyroid.
For all things Graves Disease - Elaine Moore has Graves and had RAI thyroid ablation and finding no help with her continued ill health and no answers through mainstream medical started researching this poorly understood and badly treated AI disease herself.
Now 20 odd years later Elaine is the leading researcher and her books and following World wide. elaine-moore.com
Another book , written by another lady who went through the same treatment - Barbara S Lougheed - with the clue in the title - From Hyper to Hypo to Healing - Breaking the TSH rule.
My go-to everyday book is Your Thyroid and How To Keep It Healthy written by a doctor who resigned his right to practice medicine Barry Durrant-Peatfield - who wrote to equip patients better to advocate for themselves and it's an easy read and a lesson in how the body is meant to work and how everything is inter related and works together as no one health issue should be ' seen in isolation '.
Thank you so much and perfect timing. I've spent today stressing about my appointment tomorrow with a NHS thyroid endocrinologist at the QE Birmingham. I've got my recent results, a list of symptoms ready to fight for restarting T3. Hope I don't crumble when I get there. Only problem may be that I haven't had heart scan yet, that's later this week but I did see a private cardiologist who said I could restart T3 but try propranolol. I did try it but it was horrendous, upset my asthma and extreme exhaustion. I'll try to print some of the research to back up my case. I've got the book Graves disease by Elaine Moore but must read the others. I do feel that I will end up self medicating as they all seem to want to keep us unwell treating the numbers not the symptoms.
I found Elaine's first book - Graves Disease A Practical Guide a very hard read - especially having already had the RAI thyroid ablation.
Though I am dyslexic and was severely further compromised with cognitive function believing I was dealing with dementia as well as everything else at the time.
Now optimally medicated, for most of time I'm not even aware I have dyslexia as I can think more clearly and my brain is engaged and my ' me ' is back in the room.
Good luck with the appointment - I think the issue is more one of the hospitals rules and guidelines on prescribing T3 rather than the person's medical need.
It is a ridiculous situation and I needed to stop fighting to the system in order to calm down my Graves so I gave up trying to go through the brick wall facing me and decided to go round the barrier by another route, on my own.
Thank you, they do prescribe there, but probably reluctantly. Seen there once before but they said as my tsh was suppressed they would not prescribe but await cardiologist advice. Wonder what tomorrow's consultation will bring, probably more tears but fingers crossed a smile on my face, I want 'me' back too
Thank you, sorry, I read the second reply first, of dear I'm losing it again, as bad as your laptop I am 😊. Yes first time in range for a while, shame I feel worse, I wish the consultants were as understanding as you, in all aspects. I really try to explain to them how I feel and the poor quality of my life to what it was but as you say that just ramps up my stress further. Strange that I seemed to "crash " about 10 years post RAI treatment too, just gave up I guess, grossly atrophic was how my thyroid was described following a private scan last year.
Regarding my family, I don't know of anyone with thyroid problems of any sort but who knows, I can only really go back to my parents and their siblings.
I think I'm ready to try self medicating if no luck tomorrow, I have some T3 left. I really can't take this rollercoaster of treatment anymore its wearing what's left of me out and as you say, the doctors will just say I'm depressed and try to get me on more medication as it's easier than sorting the original problem. Thank you again for taking the time to reply so thoroughly, it's really appreciated x
Thank you, very interesting, again great timing and more to tell/ask the endocrinologist tomorrow. I'm not that worried, I can't go on feeling this unwell, existingnot living. As I said to Pennyannie, I think I will end up self medicating as nobody seems to care about us, they just treat the numbers and not the patient crying out for help in front of them.
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