Hi everyone, found this forum after leaving GP in tears and realising I need to try find information for myself.I was treated for an overactive thyroid 20 years ago with radioactive iodine and historically managed symptoms with a really understanding GP who's since left. My consultant told me to never rely on my TSH as "it baffled him" but to make sure T3 T4 levels all ok and listen to my body as it will tell me what's wrong. Historically I've managed on 100mg of levothyroxin.
Earlier this year I was eventually diagnosed with osteoporosis having requested a bone density scan. I'd broken 2 wrists in 18 months, had an eating disorder when in my teenage years and started the menopause at 45.. GP reluctantly agreed I potentially was at risk of it!!
Started on alendronic acid and calcium tablets together with HRT patches and progesterone tablets on a night.
I've put on over a stone, really emotional, but the worst is the unbelievable tiredness. Did raise levo to 125mg and tsh came down from 4 to 1. Mine is normally 0.01. Because its now in range GP will only test TSH. I've asked several times to request more detailed tests but because she can't tick one of the options to get T3/T4 basically tough luck. Oh but did offer weight management options!!? Had full blood test and apparently all fine !!
I've stopped the HRT and she told me to see how I go , I could also try stopping the alendronic acid to see if that's the issue.
I've since researched that I should not be taking the calcium at the same time as thyroid meds.. not mentioned to me before.
I'm an accountant not a trained medical professional, I am certain I'm under active and just need a little help or guidance as to what to ask for going forward . I never cry which again is a major red flag to me . Just want to feel like me again.
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makeItHall3n
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You can test yourself for the thyroid hormones, rather than rely on the GP..many of us do! Get a home finger prick rest and see where your T3/T4 are at the moment.
I felt the same on HRT, cried every day and felt awful. Stayed for 3 months but couldn't take it any more. Literally felt better the day I took off the patch. Well I stopped crying so much and feeling suicidal anyway.
Calcium definitely affects absorbing of levo, so maybe you'll feel better once your levels have evened out again (assuming your taking apart now?)
Thanks for taking the time to reply , the tears have subsided a little since I took the patch off. It's so frustrating as I only started them as it was supposed to be beneficial for the osteoporosis. Slightly concerning that she suggested stopping them and the alendronic acid too to see if it helps.. so need to balance side effects of thyroid with osteoporosis and hopefully don't fall over and break anything else ,🙈
I don't have the will to try any other HRT combos right now but it might be worth looking at changing to gel or tablets? Or even a higher dose? There are so many variables. You might need a more informed GP or specialist to go through these with you.
Thousands upon thousands of U.K. patients in similar position
If GP is keen to help…..
Request GP test vitamin D, folate, B12 and ferritin
Otherwise get FULL thyroid and vitamin testing privately
Do you always get same brand levothyroxine at each prescription
Do you take levothyroxine waking or bedtime
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - wether after hyper with Graves’ disease or hypo with Hashimoto’s
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Also VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
more or less the same as me… they will only do TSH test. My Gp showed me the boxes they can tick for a thyroid blood test, it will only allow the TSH. I was really upset too. I told her my history,, i.e hyper/graves/RAI… and she even phones the lab to find out why! Seem cut backs and the costs of these test..
It is essential after the medical intervention of either a thyroidecomy or RAI thyroid ablation that we are dosed and monitored on our Free T3 and Free T4 readings and ranges.
The TSH was originally introduced as a diagnostic tool to help identify those suffering with hypothyroidism and was never intended to be used once the person was a patient as then the T3 and T4 must always been run -
as both these vital hormones need to be seen together and should sit at around a 1/4 ratio T3/T4 - once the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 60/70 % through its range.
After RAI thyroid ablation especially for Graves Disease - the TSH is a very unreliable measure of anything -
the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop is now broken -
as there is no working thyroid is situ to respond to the Pituitary as your thyroid has been burnt out and disabled - and this circuit loop - on which the TSH relies on as working well - does not respond in what is considered the ' normal ' manner.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels which we can advise on, amongst other things.
Some people can get by on T4 monotherapy.
Others find that at some point in time T4 doesn't seem to work as well as it once did and that by adding in a little T3 - likely at a similar level to that their thyroid once supported them with - they are able to restore thyroidal hormone balance and feel better.
Some can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of a working thyroid and derived from pig thyroids dried and ground down into tablets referred to as grains.
The thyroid is a major gland responsible for full body synchronisation from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Graves is an Auto Immune disease for which there is no cure - and generally only diagnosed when the Immune system starts attacking the thyroid and or eyes as they are such major important organs, and normally speaking, organs we wouldn't choose to live without.
I'm also with Graves post RAI thyroid ablation 2005 - I now run my own blood tests as I became very unwell post RAI being dosed and monitored on a TSH reading - details on my Profile page if interested - just press the icon alongside my name -
and if you get lost reading around on this patient to patient open forum supported by the charity Thyroid UK - thyroiduk.org - just press your Profile icon - situated alongside the My Hub - Chat - Post - Alerts - Menu icons - which is top right facing me on my laptop.
We do now have some research that you may want to read :
Gosh, it's never been explained to me before but I too had Graves, I've just remembered that I had to ask the consultant if that's what I had as thought I was going mad with all the awful aide effects. Had horrific panic attacks and stopped driving as that's when they happened, as suggested by GP. Wish I hadn't listened to that advice as haven't driven in nearly 20 years!! Again thank you for taking the time to reply it's so appreciated 👍
You still have Graves - it's an auto immune disease for which there is no cure :
Without the thyroid you can't experience or go ' hyper ' ever again -
but you do need to make sure your T3 is high enough in the range for you to feel well and with as few as possible symptoms of hypothyroidism.
Your TSH is a very unreliable measure of anything - and you must insist on Free T3 and Free T4 readings / ranges and dose accordingly - and you'll likely need a small dose of T3 alongside T4 to restore thyroidal hormone balance or switch to a full spectrum thyroid hormone replacement but will advise better when we see a full thyroid blood panel to include the vitamins and minerals etc.
Thank you for the reply Penny, I have tried unsuccessfully to explain to the GP that my TSH is unreliable however until this incredibly helpful forum I didn't fully appreciate why, only thay the consultant ignored it. I am going to pay forthe full thyroid screening test and take it from there. I feel I need to get back to feeling like me again before I then look into the osteoporosis... Not that I've seen anyone about it other than a GP telephone call. Sadly despite the NHS being fantastic for emergencies I feel going forward we are all going to need to take the lead on our health. Thankfully there seems to be so much knowledge and experience on this forum.
Yes - I was refused full thyroid bloods back in 2016 /17 and so did and still do my own - as refused any help with the results which showed poor conversion.
I now self medicate and stay away - details on my Profile page if interested -
just press the icon alongside my name and that takes you to my Profile page and all I've ever written on this forum - same applies if interested in anybody else's comments and want to read about them -
If you get lost reading around - just press your Profile which sits alongside the My Hub - Chat - Post - Alerts etc. which on my top top is top right - though maybe somewhere else on another gizmo just to confuse the issue !!
Make sure you read and know - how to arrange and take a thyroid full blood test :
Gosh thank you so much, it's amazing what a week can do with such kindness... Sobbing snotty mass in GP surgery to smiling. Thank you for taking the time to reply 💕
Try never to cry in front of a GP. They will instantly diagnose "depresssion" and give you a prescription for this. It stays on your notes and is the first thing they see. They dont see an ill person at the end of their tether, they just see a way of getting you out of the door.
I think a high proportion of us here have had that diagnosis, ignoring what the real reason is. We are sick and tired of being sick and tired! I was diagnosed with PTSD following a medical mess up. I knew I was just sick and it turned out my TSH was over 50! Of course the PTSD is still in my notes....
If they ever say you are depressed, hit back with "oh, the wondering womb theory again!. That stops them short! Sob away in private - a good sob can do wonders. But big knickers pulled right up in front of the GP! This stops the womb from going astray!
Here is another hug. Keep it safe for when you need it! Hug!
Thanks for the hug and I was already thinking of asking for a copy of my notes as I've had an issue with a newly qualified GP years ago , who thought I was over reacting emotionally... Just before the blood tests came back for a mega overactive thyroid. !!! All my symptoms I've since learnt were classic Graves ! I wouldn't care but I never cry and can and have dealt with loads !! Thank you for taking the time to reply , it's so appreciated 💕
"My consultant told me to never rely on my TSH as "it baffled him" but to make sure T3 T4 levels all ok and listen to my body as it will tell me what's wrong".
smart GP , had it in a nutshell .... i reckon if NHS replaced their current (useless) guidelines with this one sentence , we'd all be better off.
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Low TSH level
TSH only blood test
Suppressed TSH
Update: GP Reducing Levo - TSH Low / T4 / T3 in range
