sick of battling with GP over thyroxine levels when I feel absolutely fine !
Started with graves and had radio active iodine 20 years ago. Was very I’ll afterwards when thyroid was dying off. Put on 5 stone in 6 months before I was prescribed levothyroxine. Been on 175mu for 15 years and fine, when all of a sudden I was under scrutiny for being over prescribed and advised to reduce. I did a hue point and slowly reduced medication initially by 12.5mg over a 18 month period, then in July this year reduced by a further 125mg, bringing me down to 150mg.
I have been advised to drop a further 25mg ! ….. since my last decrease in medication I have notices a significant difference on how I’m feeling, starting to feel unmotivated, falling asleep at 6pm, my thinking pattern has changed and I don’t feel as sharp as I usually do. Starting to feel flat and don’t really care about anything.
In august this year I had full body Mot, my blood pressure, cholesterol, sugars, BMI all spot on.
I feel this is all going to change through lack of knowledge by GPS and not sure what to do. They are in control of my health and I feel they are in the process of my decline
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Gbunny
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Once with Graves, always a Graves patients and you must be dosed and monitored on your Free T3 and Free T4 blood test results and not on a TSH seen in isolation.
I too am with Graves and post RAI thyroid ablation in 2005 and started becoming very ill around 8 years later when my dose of T4 - Levothyroxine was reduced down because of a TSH reading below the range - and thereby started a 2 year cycle of increasing unwellness on my part, and no answers nor resolve to my symptoms through the NHS and I was referred to as a conundrum by my primary care doctor.
Details on my profile page if interested :
I then thought maybe that " Graves ' had come back - only to read it never went away as it's an auto immune disease and started reading and researching for myself and found this amazing forum.
Do you have on line access to your medial records and can share blood test results and ranges with forum members ?
We need to see at least TSH, Free T3 and Free T4 reading which need to be run from the same blood sample ?
Looking back I was being dosed and monitored on just TSH readings which is not sufficient and like many forum members have resorted to arrange my own bloods privately through one of the private blood companies as listed on the Thyroid UK website - which is the charity tht supports this forum. thyroiduk.org
T4 - Levothyroxine is a storage hormone which needs to be converted by your body into T3 the active hormone that runs all your bodily functions including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system, and your metabolism.
Your own ability to convert the T4 into T3 can be compromised by non optimal vitamins and minerals especially those of ferritin, folate, B12 and vitamin D and inflammation, antibodies and any physiological ( emotional or physical ) depression, dieting and ageing will also down regulate T4 to T3 conversion.
We generally feel at our best when our T4 is in the top quadrant of its range as this should in theory convert to good level of T3 at around a 1/4 ratio T3/T4 :
Some people can get by on T4 only :
Some people find, at some point in tine, that T4 seems to stop working and find that by adding in a little T3 making a T3/T4 combo their health is restored.
Some people can't tolerate T4 and need to take T3 Liothyronine only.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the thyroid gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
Yo might like to read around Graves Disease and of all the research I found Elaine Moore's books, research and website the most all encompassing - elaine-moore.com
Thank you so much for your valuable information! It’s reassuring to know that I’m not alone in my battle. I thought that the RAI would irradiate my Graves’ disease…… you know, the fact that I had RAI wasn’t in the GPS system and they had to contact Christie’s hospital for confirmation ! I need to start studying and researching this as the GPs don’t seem to fully understand. Must admit, I’ve been quite happy on 175 mg for many years with no health issues ! Recently had bone density scan and no signs of osteoporosis either. Very tempted to fight my way back up to 175mg, but I’m going to ask for blood test to check for T3 /T4 levels, not just TSH
Will also update my NHS app to include my GP as I’m more than happy to share my results on the forum
No worries - and yes, you likely will need to become your own best advocate as Graves is poorly understood and badly treated autoimmune disease.
The thyroid is the victim in all this and not the cause as the cause is one of your own immune system having gone into overdrive and turned and attacked your body -
Graves can wax and wane throughout one's life, no two people's journey with Graves the same and why it is so poorly understood but when Graves attacks the thyroid and eyes the symptoms are such that you end up at the doctors looking for help.
There is no cure, nor treatment for Graves and the anti thyroid drug you may have been prescribed simply blocks any further own thyroid hormone production while we wait for your immune system to calm down and hopefully everything fall back down into place .
Graves is considered life threatening if not medicated and rather than play the long game with the AT drugs the NHS tend to look for a quick fix to resolve the immediate problem and think by removing the thyroid either by a thyroidectomy or burning it out slowly with a toxic substance the solution and it is also believed that treating hypothyroidism is easier than treating hyperthyroidism and better treated in primary care - ( does read a little like pass the parcel doesn't !! )
So yes, we are totally trusting and unwell and believe what we are told until something goes wrong and then we find we are becoming more reliant on ourselves and other people on a thyroid forum.
The good news is this is the best forum so you've chosen well :
Interesting the most current research is not suggesting thyroid destruction in any shape or form - pubmed.ncbi.nlm.nih.gov/338...
I read that the dose of radioactive iodine is not as ' accurate ' as one might think necessary and ultimately we all become fully hypothyroid as this toxic substance slowly burns through our thyroid gland ultimately rendering it fully disabled.
I was immediately prescribed 100 T4 by the hospital and discharged around 6 months later when considered stable but since I was between permanent addresses I stayed under the hospital for around 2 years as an out patient.
I was discharged with a TSH just in range and a T3 at around 65% with a T4 around 95 % through the ranges and felt fine - just totally and utterly exhausted.
In around 10 years in primary care i was dosed and monitored on just a TSH :
When I queried my T3 and T4 levels in 2016 /17 I was made to pay to have these tested and then I had a TSH at 0.01 BUT a T3 at 25% and a T4 at 110% and told I was over medicated and after fighting the NHS for the next 2 + years I jumped ship and now look after myself and buy my own thyroid hormone replacement and run my on private blood tests.
I realised this may all just be gobblygook to you at the moment but it seems to me no one has any idea about Graves or how to treat primary hypothyroidism after RAI thyroid ablation and if relying on the short cut of just running a TSH reading you're going down the wrong road to restore health and well being to the patient.
Hi there - please see the texts I’ve received from my GP to reduce my Levothyroxine. I’ve never even seen this woman ! Managed to get to see a locum called Jayne who was more helpful - I’m just starting to understand the complications with respect to TSH T3/T4…..but the maths just don’t add up with the figures doc recommending. I am I. Process of getting GP app set up so that I can access more info on blood levels.
Is it just these few lines mentioning someone called Jayne ?
I can't see any blood test result.
It's ok to reply to a certain person, like you have done here back to me, but only myself will be drawn back to read this information which I'm afraid doesn't say anything of any consequence unless I'm missing something ?
When you have any new information it deserves a new question as then all forum members have an opportunity to see, read, help and support you.
hi - aww sorry, I did try attach a couple more texts. Basically my TSH was 0.005 when I was on 162.5 Levo. I was advised to initially drop to 150, blood tests then showed my TSH at 0.006. Gp not happy with that, then advised to drop a further 25 levo. I am refusing to drop another 25 as I don’t feel great at 150
Well yes, seems as though you too are being dosed and monitored on just TSH readings.
Refuse a further dose reduction in T4 until you have a TSH, FT3 and FT4 blood test result and range and post the result on here before agreeing to anything.
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used once the person was on any form of thyroid hormone replacement.
Last time I looked - some 4 years ago - it cost under £1 to analyse each blood so there's saving there - some 66% - sounds a massive saving doesn't it - but at what cost when people can't function and unable to work ?
You might like a book or two ?
Your Thyroid and How To Keep It Healthy written by a doctor Barry Durant-Peatfield to equip patients better to self advocate and one of my essentials for a full understanding of body physiology and how it all works together as one :
Tired Thyroid from Hyper to Hypo to Healing - breaking the TSH rules - by Barbara S Lougheed - founder of Tired Thyroid and who writes/ blogs, I think, under Hypothyroid Mom :
Should the NHS agree to rerun your blood test please remember to follow the instructions given on the forum -
arrange an early as possible morning blood test before 9.00 - fast overnight just taking in water and take your T4 medication for the day after the blood test -
stop any supplements that contain biotin as that can interfere with the lab analysis assays used :
Think that's it - obviously if getting the vitamins and minerals run as well - stop all supplements around a week before the test so we can see exactly what your body is holding onto :
Hi Gbunny, i totally recognise the feeling that someone who doesn't even know you, is in total control of your life .
I made a mental shift... what I take is MY decision, not theirs... they just prescribe the Levo .
I have stated clearly and it's recorded:
~That i understand the 'risks' (as they see them of Atrial Fibrillation leading to stroke , and bone loss) , and that i am balancing the potential risks against my Quality of Life.
~That i am aware of the signs of overmedication (faster heart rate . increased frequency of bowel movements, and in my case tense bladder , anxiety , feeling jumpy /agitated, fine tremor in outstretched fingers etc etc).. and that i would of course want to reduce my dose slightly if i felt any of those .
~ That I have tried a lower dose properly .. and it put me on the sofa for most of the day instead of being active , constipation, loss of job , house in chaos, not managing to shop properly or cook decent meals..
My GP recorded this in my notes and said "ok i don't want to make you unwell, what dose do you want to take ?"
So for now i am lucky with him and i'm taking what he prescribes,... BUT I also find ways to make sure i always have enough Levo in hand to alter my dose slightly if and when I want to . (Forward planning,, it's surprising how much levo you can accumulate if you get each prescription just a week early, and occasionally , erm 'loose a packet on holiday') ....at the moment i don't need the extra, but knowing i have it in hand is a mental security blanket ... it means i feel in control of my life and dose decisions . I hadn't realised how much "someone else pulling my strings" affected me, until i mentally cut them.
If we ever fall out about it again in future and he doesn't prescribe enough , then i will find another way to get it....... it can be bought for not much money without prescription if you know where.. and i'll tell them this is what i intend to do if they say they won't prescribe anymore .
On a more practical level right now ... if you let us know your actual TSH /fT4 /fT3 results [with lab ranges] on your current dose (and on previous dose you felt better on) , we can help you find the best evidence to use to counteract pressure to reduce further .
thank you for your reply. It’s reassuring to hear from someone whose situation is so similar to mine. I have actually sat with gp and said that they can do all the tests they need, but I’m not dropping any more (trying to drop a further 25)
I’m on 3 monthly blood tests and been spoon fed my thyroxine every 4 weeks (they’re not aware that I have a 6 months stash of 25s) !!
I’ve never met my original Gp, they just texted me advising to reduce my dose until I phoned up and demanded a face to face appointment or referral to endocrinologist! …… they’re sick of battling with me I guess. I will send blood test info once I’m registered on GP app
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
You can refuse to reduce dose and ……depending on results…..push for return to higher dose
But first see what results GP has
Insist GP does full thyroid (TSH, Ft4 and Ft3) and all four vitamins tested as next step
Comprehensive list of references for needing LOW TSH on levothyroxine
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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