Hi lovely people, it's been a while since I posted but hit a situation that I need some inspiration.
In the usual cat and mouse situation, my GP reduced my levo last October despite strong protest from by me.
I had my thyroid removed in 2008 due to Graves' have severe thyroid eye disease and so far 7 operations on my eyes to try and help. It is very important to keep my TSH suppressed whilst I have TED.
My vitals are all that of hypo, low BP, pulse, cold etc. In my last two operations the surgeons ask if I had forgotten to my thyroid meds because my BP was so low?
Here are my latest done in Oct whilst I was on 100mcg and they told me to reduce my 12.5mcg.
Now I realise these results do make me look over medicated on some levels but I can say with certainty I am not.
Since October I have remained on 100 mcg and not been back to blood test but now they had held back my prescription and given me 5 days worth with saying it's to prompt me to have my bloods done.
I have repeatedly explained I am hypo and they say I am overmedicated and going to die of heart attack or osteoporosis.
Best way to approach the situation please.
Thanks in advance.
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shambles
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Are they saying you are overmedicated due to your suppressed TSH or your over range FT4?
If it's the TSH then they can check with your endo or whoever is dealing with your TED to confirm that you need your TSH suppressed.
If it's your FT4 then those results:
T4 26 11-21
T3 4 3.1 - 6.8
show that you are a poor converter of T4 to T3. You need an over range FT4 to produce a measly amount of T3 at just 24.32% through range. It's the low FT3 that's giving you the hypo symptoms.
You need to have optimal nutrient levels for thyroid hormone to work properly - have they been tested - Vit D, B12, Folate and Ferritin? If these are optimal then it looks like you need less Levo plus the addition of some T3.
All other nutrients checked and good. Ferritin over but I think that was too much turmeric but that's for another day :-). My homocysteine is over range but RBC readings are a little off but B12, is above range both active and ordinary.
I have one Dio2 gene and two Di01 genes, so there is a chance of poor conversion. I can see as time rolls on that since having my thyroid removed, I am building up more T4 and my T3 is reducing. All of this I need to address.
My cholesterol is high, 7.5 (but also read Dr Malcolm McKendrick's book) and I eat very clean, my BMI is 21.3, therefore I see this as another hypo sign.
I have given all that information to the GP and they glazed over by the time I said, I'm hypo not hyper. They insist the T3 level is acceptable.
Currently not under an endo but yes under an ophthalmologist and I could reach out but they don't make getting in touch with them easy!
When you say that your GP is "holding your levo back" do you mean you have been denied a prescription?
If your GP is doing that it is something you should complain loudly about (in my opinion). Thyroid hormones aren't an optional extra for people with no thyroid. And I don't think teaching doctors to blackmail patients with life-threatening medical conditions is an official part of the medical curriculum.
I would definitely suggest that you get your basic nutrients tested, and I would add iron to the list given by SeasideSusie if possible. Ferritin is a measure of your iron stores, but serum iron is different. Seeing both ferritin and iron together is important because in certain circumstances they can give important clues to health problems.
Not knowing both ferritin and iron got me into (health) trouble some years ago. My doctor thought my ferritin was "fine" but it was low in range. I found out later that my serum iron had been below range for several years. In the end I had to treat and improve my own low iron and ferritin (and still do, nearly eight years later).
If your doctor is going to treat you according to your TSH and you have no thyroid I think you really need to change your doctor, if at all possible.
Can I also suggest that you talk to your doctors with a male witness in future, and record conversations along with date and time and who you were speaking to. A loudspeaker phone is a worthwhile investment if you haven't got one, I think.
In answer to your question regarding giving me my thyroxine, then yes. I went to pick up my prescription and there was 5 100mcg pills in the box with a note to say, we have given you a reduced amount of pills to 'prompt' you to have a blood test! I am still in shock. I have no thyroid, it is not easy to access my prescription currently. I have eye cysts making anything more difficult!
I do test with medichecks for the other things thyroid related thanks to this board. I was on here daily from 2010 to 2018 when I tried to stop using my laptop so much due to my eyes.
I see myself as someone that is pretty passive and never want to bother anyone, yet I found myself in an awful stand off with a young doctor 6 months ago about reducing my meds.
I find any confrontation hard but certainly agree taking someone with me or recording meetings seems that the right thing to do. I have never thought of changing doctors but I guess I'll have to think about it now.
Just seems absolutely absurd that someone with no thyroid can be threatened with no meds.
Yes, exactly. I have a cyst on my right eye at the moment. Something I have not had before since having orbital decompression on it 5 years ago. The ophthalmologist said then I needed to be on a higher dose but this was ignored by the GP.
Like you, I had my eye drops reduced last year also. Told that hylo-forte is expensive. Dry eyes, stress = eye cysts. Another reason I'd prefer to look a GP in the eye!!
I believe doctors work to guidelines and computer dogma otherwise they may jeopardise their own careers and mortgage payments ;
Doctors are not emotionally involved - they can't be - though they pretend they are :
I'm dyslexic and when I read Elaine Moore's first book and saw my symptoms in print I thought my doctor would be interested as well, and not see me as a " Conundrum " - her words, not mine - so I purchased a second copy of the book for her, as she knew of my reading issues, so to help with mine and her understanding of the disease - she declined the book and continued to treat me with even further contempt - I was so upset as I trusted and believed she was there to help me get better.
We know Graves is poorly understood - considered " life threatening " so the medical mainstream thinking is to remove the thyroid - thereby switchng the patient into a " life limiting " scenario and swiftly passed back out into primary care where the knowledge of Graves + thyroid is even more confused.
There are no guidelines for Graves post a thyroidectomy or RAI treatment - we are just bundled together with all other hypothyroid people, monitored and treated on a yearly TSH blood test result.
Doctors in primary care are not allowed to prescribe T3 - Liothyronine and NDT is meant to be available on a NHS named patient only basis prescription - which means the doctor needs to support the application for a medication not on the approved list and make " some noise " with the local CCG :
Treatment in primary care was much better 20 + years ago when doctors had some options, could make decisions and have some input into patient care.
Graves is an auto immune disease that just happens to attack the thyroid :
The thyroid is the victim in all this and not the cause.
The cause is your immune system attacking you -
Graves is not solely related to the thyroid, as you well know, and it is known to be a stress and anxiety driven auto immune disease and the removal of the thyroid, followed by inadequate, inappropriate treatment can simply compound the patients well being even further.
Simply switching somebody from hyperthyroid to hypthyroid does not solve the AI component of this disease, which sadly, is ignored in mainstrean medical.
pennieanne, you write so beautifully about the disease and given your are dyslexic, which I also am, even more impressive.
I have printed out information previously too and brought to both the surgery and my endo appointments and they both very insulted. I see one doctor who just admits openly that I know a great deal more than he does but also says he can't really do anything about it. I am not without sympathy for doctors. We are now fully educated on our own topic and it becomes our specialist subject. I was told the GP's spend at most three weeks on the endocrine topic and most of that is diabetes. Now diabetes is were the money is.
I still suffer agoraphobic problems as in the early days I was told that was my diagnoses before the I told my GP I had Graves' and they disagreed even though my eyes had fully protruded by then.
My mum had Addison's and was told there was no hereditary link and no link from that to Graves'. I test my own cortisol now.
I have asked for yearly breast scans as I had repeated cysts and cancer uk research sites that people with Graves' have 12 times increased chance of breast cancer but even with that printed, they said it wasn't relevant. So, now, I just call up and say I have a lump to get tested.
At the end of the day, I have been ill from 1996, it took me to diagnose Graves' in 2008 and since I have been diagnosed they make me feel like a hypocondriac which I am not. I rarely go to the GP, probably only when called in. I have had kidney stones and still treated myself. I would rather suffer than someone be so dismissive. I just want them to leave me alone!
It was left me with a life long worry that when some else occurs, heaven forbid, cancer, I will get poor treatment.
In summary, the care is almost worse than the disease on quality of life.
I hid the fact that I was dyslexic for very many years so not to restrict my career options : " stress " was my middle name from a very young age - but didn't know any different and thought myself just like everybody else :
I couldn't hide the fact I was left handed but that seemed to be seen as " funny ' :
Graves is said to be stress and anxiety driven :
There is said to be a genetic predisposition and that a sudden shock to the system, like a car accident or unexpected death of a loved one can trigger Graves Disease.
I was attacked 4 months prior to my diagnosis by a man I employed as my assistant manager.
I only learnt all this 10 years after RAI treatment which I deeply regret.
Elaine Moore's first book, plus Dr Peatfields 's book Your Thyroid and How To Keep It Healhy were my first corner pieces to my own jigsaw puzzle and then this amazing forum gave me the straight bits to piece together my own puzzle and what I had to do next.
To be honest I think you should ask for a referral to an endocrinologist at this point in time : your conversion is poor and it's obvious that you need more than just T4 - thyroid hormone replacement.
Self sourcing NDT or T3 is becoming increasingly more difficult and without a prescription we are at the mercy of one or two pharmacies - which isn't a good place to be and we would all prefer to be in the system rather than out so first things first, I think you should see what the NHS can offer you.
I can PM you details of where I think current stock of NDT is being sourced - but this may change with time, as stock from Thailand has been erratic for the past year.
Similarities are almost scary here. I am sorry that you have suffered with so many life and personal issues.
I too am left handed and in the early years of school got punished for being so until my mum found out and they let me use my left almost a year later.
I had a life trauma too that sparked my Graves', initially diagnosed with PTSD, I still believe it was just Graves'.
I agree my body is struggling to convert and going forward that will get worse. My priority has been my eyes as sight loss was on the cards, I have had radiation, 14 steroid infusions and as I said OD. After all of that I have peripheral gluacoma, early cataracts from the steroid treatments and carry the macular degeneration gene! Yay! I lived 8 years behind sunglasses in shame. So, you're right I need the NHS for my eyes.
I will ask for referral but my expectations are low. I can ask my ophthalmologist the next time I see him if he can get involved. To be honest his knowledge of thyroid meds is much greater than my endo but he doesn't particularly want to get involved or override the endo.
I would appreciate you point in the right direction for NDT but I doubt I will change over until my eyes settle and by then as you say, things might have changed as far as availability. You hit the nail on the head with regard to going outside the system.
I found more than a coincidence that both of us have a similar journey with mostly the same outcome.
Thank you so much for all you've pass on. I have got up today with more determination and I will read the books, I ordered them on Amazon last night. Knowledge might help
I know reading books was never on my " To Do ' list and just trused that everybody, especially medical mainstream, knew best :
It's also difficult hen with eye issues so fully appreciate the challenge:
You might find that the Elaine Moore Graves Disease Foundation website easier to handle ?
I found the book very difficult especially reading about the consequences of having ingested RAI and think she wrote this first one from more of a medical perspective, as she is a trained medical technologist in the States.
The website seems, to me, to be more PC - In smaller chunks and little more easier to understand for patients - but this could all just be me and my understanding as when I was undermedicated my cognitive function was severly compromised and I struggled reading and writing anything :
Dr Peatfiled's book is on the Thyroid UK website - and an easy, sometimes funny insightful read, and he is hypothyroid and takes NDT - though hounded out of the profession because of his preferred treatment options.
The Thyroid uk website also holds so much information - so, take one day at a time, at your pace, and get your ducks in a row.
A fully thyrod panel to include TSH, T3, T4, inflammation plus ferritin, folate, B12 and vitamin D is the first step to turning some of this around for yourself. There are private companies listed on the Thyroid uk website if your doctor can't oblige - and just throw back up, onto this rolling screen, in a new post, the full results and ranges and there are people on here who know better than most endocrinoloists and will advise you of your next best step forward to better health.
I am pretty good at testing. I like you learnt well from this site in it's early days. I was one of the early subscribers when I was bed bound and desperate. The good intentions and help of people like yourself pretty much gave me my life back and I will never forget it or stop being eternally grateful. I recommend it to all who ask about thyroid issues. Back then there were very few of with Graves' and certainly even less with TED. So I became a little like you in that I read, tested and questioned until I became fairly knowledgeable and then was able to pass that on. But my eyes worsened and I needed to reduce my screen time and I eventually stopped. So glad I found it and uplifted to get so much great advice when I need it.
pennyannie, treat yourself because you have helped so much.
Although my medical history doesn't involve Graves' Disease, I have my own medical history issues which have been treated with scorn and insults and insinuations of hypochondria and mental illness. So these days I won't go and see a doctor with anything that is invisible because I can't deal with how I am treated unless I'm absolutely desperate. And when I am desperate I usually regret seeing the doctor because they find so many ways to belittle me.
And like you I worry about my future. If I develop dementia I won't even be able to tell them my symptoms - and dying with dementia can take years and involves a lot of pain. Ditto with cancer. I'm not afraid of death or being dead but I am afraid of dying over a long period of time - months or years - without pain relief or treatment. And based on how I get treated by doctors when they can't see what is wrong on the surface I am convinced this is going to be my fate.
It is all so so sad and I am sorry that we feel this way. I feel it is a little like 'locked in syndrome' or a little voice saying 'help me please'. Just nowhere to turn.
I fear dementia too and I have good reason to as I carry the APOE4 gene! It is one of the reasons I am reticent to go out on my own. How on earth could you get anyone to understand your medication requirements? I glaze over myself sometimes when I hear myself try to explain Graves' and TED! lol
I wrote a long piece here before about thyroid issues and treatment is like some form of conspiracy theory. How could it have come to this? Years ago they were better at treating this disease. Doctors hate what the internet have done for their jobs and perhaps they have a point but it seems to have become inverted in the knowledge stakes, we read and increase our knowledge they avoid the internet at all costs.
You are not over medicated - your T3 is only around 25% through its range :
Your TSH is likely to be low suppressed as you have Graves Disease and is the least important number to be looking at :
Your T4 is over range because you are not converting it into T3 :
It is essential that you are dosed and monitored on your T3 and T4 blood tests with a view to having these two vital thyroid hormones dosed and monitored to be balanced in their ranges and we generally feel at our best when both T3 and T4 sit in around the top quadrant of their ranges.
T4 - Levothyroxine is a storage hormone and your body needs to be able to convert the T4 into T3 - which is the active hormone that the body runs on. T3 is about 4 times more powerful than T4 and I read the average person utiilises about 50 T3 daily just to function.
Your ability to convert the T4 into T3 can be compromised by low vitamins and minerals and it's suggested that we maintain ferritin, folate, B12 and vitamin D at optimal levels which probably means you will need to supplement these yourself as you may well be in the NHS ranges but just not high enough for wellness when without a thyroid.
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 said to be at around 10 mcg plus a measure of T4 said to be at around 100 mcg. with T3 said to be about 4 times more powerful than T4 :
The optimal conversion ratio when on T4 only is said to 1 / 3.50-4.50 - T3/T4 - with most people preferring to be around 4 or under - so if we divide your T3 into your T4 we get 6.5 :
The obvious answer is to add in some T3 - Liothyronine and drop down your T4 a little.
Personally I just think it makes common sense to replace like with like and if there has been a medical invention, either surgery or RAI ablation, that both T3 and T4 be on the patients prescription for if, and probably when, both these vital hormones will need to be prescribed to rebalance T3 and T4 and restored to a high enough level acceptable to the patent.
Some people can get by on T4 only, some people simply find, overtime, T4 doesn't work as well as it once did, and some people simply need both these essential hormones dosed and monitored independantly to restore patient well being.
I too have Graves and thyroid eye disease caused by RAI thyroid ablation in 2005 and now manage, lingering Graves, TED and hypothyroidism.
I became very unwell some 8 years after RAI ablation and spent over 2 years going around various hospital outpatient departments and had no answers to my problems, except I had a low ferritin and was referred to as a conundrum by my doctor.
House bound I purchased Elaine Moore's first book Graves Disease - A Practical Guide - thinking maybe that Graves had come back : I learnt it never went away and read of the current symptoms I was dealing with that the NHS had no answers for :
I then found this forum and started on a massive learning curve, culminating in my having to self medicate with full spectrum thyroid hormone replacement as I was refused both T3 and NDT through the NHS in 2018. I am so much better now it simply defies my understanding of the NH service - but there you go.
I'm afraid you too may well need to equip yourself to become your own best advocate and suggest that you go onto the Thyroid UK website, who are the charity who support this amazing forum, where a list of " sympatheic endo's and doctors ' is held , one of whom might be able to serve you better than your current medical team.
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Your Ft3 is very low
You have very poor conversion of Ft4 to Ft3 - common when vitamin levels are low
What vitamin supplements are you currently taking
Insist that vitamin D folate, ferritin and B12 are tested
Or test privately
Are you currently on strictly gluten free diet?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common after Graves
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Likely to need addition of small doses of T3 prescribed alongside levothyroxine
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Thanks for responding, giving so much information and greatly appreciated.
I use Boots mercury pharma always. You are right that my test was later in the day than normal, my bad but there had been 24 hours, well 29 hours in between.
I test with Medichecks and others and most things are good. Vitamin D 110 nmol, when I first went to the doctors after I had my thyroid out, it was 12 nmol and they didn't say a word! B12 two thirds into range, ferritin slightly over but I did this but taking too much turmeric and it is coming down again. Folate at the bottom of range and I always need to top up. My inflammation markers are good. I eat very clean but not 100% gluten free. I occasionally take a bit of zinc and selenium. Take a good probiotic for gut health, betaine. My homocysteine is just over range but I have tested good on active B12 and MMA, so it's not that. In the last 2 years my cholesterol has started to climb but my BMI is 21.
I have one Dio2 gene and two Dio1 genes. Poor conversion as you say. I have presented this to both GP and endo and I might as well talked about knitting!
Once you have Graves' they think you are always over medicated. I cannot get them to understand. Now they want to give me not medication at all.
I think we have indeed travelled a very similar path. No one that I would wish on anybody.
I am sorry you have to go through the mill and find the answers on your own.
I too became housebound and found this forum way back when. I was here in the early days, I believe I was member 3000 and something. I learnt a lot and I hope I contributed well as well, especially on thyroid eye disease, my specialist subject, sad!
I wholly agree with everything you said, the longer I go on the more ineffective the thyroxine is. But the sad thing is, I really don't want to go out on my own. I am too scared to transition to T3 and NDT, I would rather plod along on T4. But I know I have to grow up!
How do you manage your situation now with appointments? I am at the hospital a fair bit with my eyes, I am NHS guinea pig. They will know I presume by your bloods that you are taking T3 and NDT?
I am in the final round of eye surgeries and I do not want anything to comprise my chances of the surgeries.
Totally understand since you are still needing " the system " :
Well I was discharged back out from the hospital in 2005 after RAI thyroid ablation :
I was seen in outpatients for eye issues and discharged with eye drops that were with preservatives and compounded my eye issues in around 2010 :
After over 2 years in various departments initially for Sjogrens Syndrome, as suggested by my dentist, I was discharged out with no answers, but just a low ferritin in 2016 :
I then started looking at low ferritin and eventually found myself on here reading other peoples questions and related to some more than others.
I purchased Elaine Moore's first book, which explained the symptoms I was then dealing with but which the NHS had no answers for, and Elaine also wrote that some Graves patients do better on a T3/T4 combo.
So here I am 5 years later, in my third year of taking Natural Desiccated Thyroid and doing so much better and have my life back.
Having been refused T3 and NDT on the NHS in 2017/18 I decided to help myself as I felt I had nothing to loose - my thyroid eye disease had calmed down, and here too I was having to buy my own eye drops, as the NHS only allocated me 1 box a month which meant one drop a day in each eye, which as you can imagine is a waste of time.
I wrote to both the one and only endocrinologist I'd seen in over 10 years, and to my doctor, that I was self medicating and that I would be happy to comply with the yearly thyroid function test should a T3 and T4 blood test be undertaken.
Never heard a word, no acknowledgement, but T4 medication dropped off my prescription about a year later, which now is just for Hydromoor eye drops and Vagifem.
I haven't seen a doctor since 2017 and fortunately, I have no need for the hospital.
It's essential you stay within the system for the support you quite rightly need and require,
and I'm truly sorry this disease has caused you so much pain.
A time may come when you feel more able to make an independant choice - and if that time comes, you'll know and have the suport of the forum members.
Well done on stepping out of the system, you're a brave lady.
I am tempted and have been tempted on numerous occasions to switch to T3, I've even bought them! But when it came down to it, I couldn't do it. This disease knocked me for six. I really do wish it was understood better.
I tried some T3 with a little less T4 and that too was like a light bulb being lit in my brain : I found the synthetic T3/T4 combo made me feel a little " turbo charged " and as though I was wearing stiletto shoes too sizes too small !!!
I prefer Natural Desiccated Thyroid as it seems softer on my body, , more like wearing slippers all day, and again it was as though my pilot light had been repaired and reignited.
Yes, Graves is a poorly understood and badly treated auto immune disease :
So again, we need to be our own best advocates - the trouble is finding anyone prepared to listen or understand anything that doesn't agree with the dogma and computer guidelines.
I don't see myself as brave - just desperate to feel better and once you know and realise there are options, and solid documentation supporting other options, I just felt I owed it to myself.
It could just be that I didn't / wasn't on the right dose for me and I found I couldn't continue with the brand that I started off on and the bulk T3 I purchased didn't suit me at all and gave me massive headaches, so I gave that away :
On NDT I've settled on only 1 + 1/2 grains which breaks down to 57 T4 + 13.50 T3 :
So, if I do have to go back at any point of time to a sythetic T3/T4 mix I've a much better idea now of where to start off again :
However it does seem, after RAI, NDT does seem to be the preferred option of many people : and in all honesty I think replacing like with like, if you can, sounds the more sensible option.
Take good care, you've had a lot to contend with :
I was fortunate in that I was told my eyes weren't bad enough for surgery ;
However, it didnt help me dealing with the psychological and emotional impact of not recognising myself in the mirror, and hating what Iooked back at me.
Well, the issue with RAI thyroid ablation is that it slowly disables the thyroid in situ :
The idea is that if the dose of this toxic substance is accurate correct, ( ? ) you may still be left with a partial, burnt and damaged thyroid gland with some function.
I don't know as there was no follow up to assess " this treatment " but it does seem most people end up, eventually, fully hypothyroid.
I was put on 100 T4 immediately after RAI and only ever been on 100/125mcg for 10 years.
i was dosed and monitored to be in the TSH range - I felt better on 125 mcg but this gave me a TSH of 0.01 and I would then have my dose dropped back down to 100 mcg T4 because of the TSH - when I knew enough to question this decision, I was told " NO " and given anti depessants as a consolation prize.
In Graves patients it is known that you can't use a TSH for monitoring as we can have circulating Graves antibodies " sitting o the TSH " which is why we could have gone overactive in the first place.
Graves waxes and wanes, and the antibodies can still be in your blood causing confusion, as in primary care you are generally dosed and monitored on just a TSH result and are more liable to be under dosed :
You need whatever thyroid hormones you need in order to function :
The TSH is the least important number and shouldn't be used in isolation as it was originally introduced as a diagnostic tool to help identify patients who maybe hypothyroid.
Once on any form of thyroid hormone replacement it's not a reliable measure of anything - though I do believe in primary care the TSH is the first and possibly only test run :
You might find Barbara S Lougheed's book interesting - : a lady dealing with Graves : Tired Thyroid - Hyper to Hypo to Healing - Breaking the TSH rule :
Shambles, I don’t have much more advice to give than you’ve already had—but this is terrible treatment. I know they don’t have to sign up to the Hippocratic Oath these days but “First do no harm” seems a pretty basic tenet for a doctor.
Maybe a politely worded letter to the Practice Manager might do the trick? Point out that they’d never say to a type 1 diabetic, “we’re just going to withhold your insulin until you’ve had a blood test” would they? You don’t have a thyroid. You cannot make any thyroxine. It’s as stark as that.
It might be that the doctor has had no hand in this ridiculous state of affairs and it’s the practice staff who’ve come up with this idea of saving money via threatening patients. Whatever it is, it’s unacceptable. Hope you get something sorted quickly xx
I feel like I want to be a petulant child and just run out all together and then die (not literally) and then say, I told you so, hope you get in lots of bother! But obviously I can't as that doesn't serve the situation or me very well.
I am really surprised. Most people describe me a crowd pleaser. I am polite, mostly not needy and always grateful. I feel picked on, not used to that!
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
20% Patients with no thyroid can not regain full health on just Levothyroxine
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