Hi all I'm new to here and would love to get some advice. I am at my wits end with my GP over my Thyroid, I am sure he thinks I'm thick....any how, back in 1988/89 I had full removal of my Thyroid as it was overactive and was very dangerous, they removed all of it...at the time I was youngest person for full removal. My GP who is young and knows nothing about what happened to me back then , has told me my Thyroid was under active ..erm no it wasn't... and I only had some Thyroid removed again... no I didn't....My doseage has been reduced to half of what i was on.. GP has said my bloods are always over but they are not concerned, well i am, as I feel awful . I have asked to be referred back to hospital to get some answers , which he has done. On my last visit to GP I explained about a smell I am smelling all the time and its driving me mad , and my hair is / was falling out in clumps .He isn't bothered as I have Fibromyalgia and he puts it down to that ,no matter what I go to see him with its fibro . I am so fed up . Can anyone help me? Thank you for letting me vent
Thyroid and GPs: Hi all I'm new to here and would... - Thyroid UK
Thyroid and GPs
LucyLou56
Welcome to the forum.
First thing to do, which helps us to help you, is to post your latest test results along with their reference ranges (ranges vary from lab to lab).
If your surgery has online access you can register for that and find them there. If not then ring the surgery and ask the receptionist for a print out of your results. Don't ask the GP, they don't like us understanding our results, so just ask the receptionist and say you will pick them up at their convenience. Don't accept hand written or verbal results, make sure you get a print out. In the UK we are legally entitled to our test results without charge or question.
When you have these post them on the forum (remember to include the reference ranges), tell us what thyroid meds you currently take and when you took your last dose before the test (ideally we should take last dose of Levo 24 hours before the test). We can then comment and hopefully help you with the way forward.
Thank you I will arrange to get them , thank you
Ideally you would ALWAYS test thyroid levels early morning, before 9am and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking and how much
Do you always get same brand levothyroxine at each prescription
Many people find different brands are not interchangeable
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you currently taking, if any
Approx how old are you now
Thyroid levels and conversion of levothyroxine (Ft4) to active hormone (Ft3) often goes haywire around or after menopause
Presumably you had Graves’ disease before thyroidectomy
Do you have any thyroid antibodies test results from the past, or recently?
I was on Thyroxine straight after my Thyroid was removed then it changed to levothyroxine... I have been on medication for 30+years I am 56 now .I am vit d deficient and have been for years I take vit d which I buy over counter as GP said to expensive. I was folate . Every time bloods are done GP says they are fine , although I did see his computer screen on bloods ...I had a quick glance.. there was lots of red, which made me concerned. My last blood test was via the hospital pre op, it was them who sent the GP an e-mail saying asp to sort my Thyroid as level was high....I had hysterectomy about 14yrs ago... I asked GP what was the cause of myThyroid GP said ... oh it was one of them things... again this has started alarm bells going off in my head.My brand changes all the time again I asked gp if this is the problem he said no...
Sounds like your GP is out of their depth
First thing is, do you have any actual blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively if not available online, ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended on here that all thyroid blood tests early morning, ideally before 9am 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Do you normally take levothyroxine waking or bedtime
No other medications or supplements within 2 hours of levothyroxine
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Vitamin D tablets should be minimum 4 hours away from levothyroxine
Vitamin D mouth spray ok an hour after
How much vitamin D are you currently taking
Are you currently taking any other supplements
I have always took levothyroxine on empty stomach with water of a morning don't take of a night, I'm on other meds , wasn't told to take vit d 4 hrs after levothyroxine , I will do now ,and all my other meds 2hrs after.I take vitabiotics ultra vit d 3000 IU (D3 75ug 1 a day, I told gp this is what I was taken he said they are fine ...I take lansoprazole twice a day, pregablin twice a day I stopped taking one of a morning and just take 1 of a night, I stopped taking my mirtzapine,estradiol 1 of a morning, propranolol 1 of a morning... I was like a zombie couldn't cope so had to try and get some of me back ... I have questioned all this with gp with no avail including different manufacturers all the time . I know I have olfactory after reading about it as the smell i am smelling all the time even thou there is no smell is driving me mad ...
25yrs ago my whole immune system crashed , the gp has said all my levels are fine
On top of slowdragons comment, lowering stomach acid reduces nutrient absorption, one of the jobs of stomach acid is to add a positive ionic charge to the nutrient so its attracted to an alkaline body ie opposites attract. Acid reflux is caused (in most cases) by low stomach acid, the sphincter at the top of the stomach relaxes and becomes weak, you know the saying use it, or lose it... its why the stomach acid goes up the oesophagus.
These are other things the doctors are out of their depth or just want to prescribe more meds ..
How long have you been taking Lansoprazole
Lansoprazole, like all PPI tends to lower vitamin levels
On levothyroxine we tend to have low vitamin levels anyway
Important to test magnesium, vitamin B12, folate, ferritin and iron at least once a year
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Iron Deficiency and PPI
medpagetoday.com/resource-c...
futurity.org/anemia-proton-...
How long have you been taking propranolol
How much propranolol are you taking……or have you stopped propranolol. Usually necessary to reduce dose propranolol very slowly
Propranolol is used to treat hyperthyroid patients, as it slows down uptake and conversion of levothyroxine
So on levothyroxine it’s important to only reduce propranolol very very slowly
My last blood test was via the hospital pre op, it was them who sent the GP an e-mail saying asp to sort my Thyroid as level was high.
You need to get hold of these results
Come back with new post once you get copies
I have been taken lansoprazole about 3years I have colicolitis ,the neck of my gallbladder is blocked and I am waiting for operation, this is what the pre op was for .I was put on propranolol for anxiety I take 40mg of a morning
How long have you been on propranolol
Isn’t Mirtzapine for anxiety. GP prescribed both?
Propranolo about 3yrs... I suffer with depression I was on fluxtine for it I had an assessment due to being referred by gp to mental health they changed fluxtine to mirtzapine which I do not take.
Suggest you ask for medication review by mental health team
Propranolol affects levothyroxine
Depression often linked to low Ft3
Psychiatrist can prescribe T3, if necessary
You need TSH, Ft4 and Ft3 tested together
Plus vitamin testing
Thank you for all your advice , I really appreciate your help .
Brand change of levothyroxine can be important
Many, many people find different brands are not interchangeable
Are you aware which brand suits you best
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
New guidelines for GP if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Hi
Yep, once you have something like Fibro, which has lots of symptoms but no definitive tests then GP's love to blame it on that.
Ingrowing toenail? Must be your Fibro, broken clavicle? Nah it's your Fibro. Bleeding from your spleen? Absolutely not, it's your Fibro making you bleed uncontrollably into your abdomen. It's lazy, it's very poor medical care, and just a ploy to get you out of the surgery.
If they can blame your Fibro and by extension , you, then it's cheaper and easier for them. I have fibro as well and before I was diagnosed as hypothyroid pretty much everything was blamed on that. Sorry to sound so cynical but GP's are businesses now, with targets, budgets etc. They aren't interested in giving you the care you might need.
I agree, I've managed my Thyroid for a long time . I was diagnosed by a rheumatologist for fibro and have pressure points .I have other conditions as well... depression, anxiety ... this is why I have been referred back to hospital by my request .
Hi
Yes me too, I also have Ehlers Danlos in the mix so my rheumatologist told me. But if you've got a label, doctors love to use it. Hope you get the help you need 😀
First stop the surgery. Ask for printout of your last few blood tests with ranges. They can’t refuse or charge you for them. Good luck. X
Hi I have phoned gp surgery and asked for a print out , the receptionists has said I have to go to surgery and sign a form saying what I want then it will go to GP to see if its ok to do , this apparently is there protocol. I cannot access my medical records on line as the on line access is not up and running. I am going to pay private for my full thyroid bloods , then see a different gp in the surgery with them ..
Come back with new post once you get results from GP’s (and the test results that hospital did too ideally)
Members can advise on next steps
What still needs testing etc
You must NOT suddenly stop propranolol. If/when you might want to reduce/stop it must be done incredibly slowly
Post yesterday re propranolol
healthunlocked.com/thyroidu...
Other posts that mention propranolol
Some surgeries just like to puff out their chests 🤬 I would do what they ask , it’s still yours by law and they have to hand them over either when you ask or when gp says ok but you will get them. I’m in same boat re no online access but at least I don’t have to faff about getting a printout
Hello Lucylou and welcome to the forum :
So I'm guessing your original diagnosis was Graves Disease and after taking medication for a while it was decided that you should have a thyroidectomy ?
Graves is an auto immune disease so you might like read around this poorly understood and badly treated AI disease on the Elaine Moore Graves Disease Foundation website .
The thyroid is a major gland, liken to the body's engine and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you daily 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.
T 4 - Levothyroxine is inert and a storage hormone and your body needs to be able to convert the T4 into T3 which is the active hormone that runs the body and said to be around 4 times more powerful than T4.
Your conversion of T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing, so whilst some of these might be out of our control, we can at least manage what we can for optimal health and well being.
It is essential that you are dosed and monitored on your T3 and T4 blood test results,
though I am fully aware that in primary are you may only have been getting a yearly TSH blood test.
If your doctor is unable to run the necessary blood tests as already detailed by other forum members you can arrange these for yourself - if you go into the Thyroid UK website, who are the charity who support this forum, you can read up on all things thyroid and there is a page there detailing private companies who can run the relevant blood tests for you.
Once with the results simply start a new post with these results and ranges and everything will be explained to you and what you can do to help yourself back to better health and well being.
I too have Graves but had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and found this site around 6 years ago when very unwell and am now much improved and have my life back and why I come back on to try and give back, where I can, as there is much you can do for yourself with a little bit of reading, understanding and knowledge.
Is graves disease, Thyrotoxicocis?
Thyrotoxicosis is excess thyroid hormones and Graves Disease simply one reason for this to have happened :
The symptoms experienced will generally take you to the doctor and when the blood test is run the blood analysis may show over range and positive antibodies -
If these are a TSI ( a Thyroid Stimulating ) or a TR ab ( a Thyroid Receptor blocking ) antibody this is then diagnosed as Graves Disease :
Other over range and positive antibodies are TPO and or TgAB and these would be linked to Hashimoto's AI thyroid disease :
If neither of the above are evident, further tests would be conducted to ascertain the reason for the thyrotoxicosis.
Hi Lucylou56, You can apply to the hospital for a copy of your medical records. This would confirm what your surgery was and would enable you to stick it under your GPs nose and say " you're wrong". These days you get a copy of the discharge letter which with some help from Google or a medical dictionary, you can decipher.Personally I would change my GP. All the best x
Antidepressants and thyroid medication don’t play well together even if you take them hours apart and I look forward to seeing your labs when you post them.
Can you explain why? Thank you
I can’t explain why they just seem to and plenty of people report issues with thyroid meds and antidepressants…. From my own personal experience when I was on Cymbalta my thyroid levels were horrible and I felt horrible once I stopped and retested my thyroid levels they went back to normal and my issues subsided I haven’t touch antidepressants again after that.
I have applied for medical records from hospital, they will send them within 30days ... I am waiting for GP print outs which I filled form in for , Thursday before Easter . I have asked for the last 7yrs bloods and what was written regarding my thyroid, also the discharge letter off the hospital . I will post once I have all this .
I have my results from GP.going back 7yrs when medication started to be reduced..... I have done a bit of research ...Firstly. .. I got my discharge letter from gp from when the hospital discharged me after my op in 1988, diagnosis was Thyrotoxicosis , operation Partial thyroidectomy ,which is part of my thyroid was left.....the Consultant surgeon has wrote ... Sub-total thyroidectomy for Thyrotoxicosis, which is a small amount of thyroid tissue is left. .. so the discharge letter contradicts its self.... I know I had full removal ...
My last blood test results on...30/11/21, T4 level 22.4 TSH level 0.25 , this was done by hospital as i am awaiting to have my gallbladder out , they sent results to gp with asp on it to reduce and stabilize before operation... (I haven't had the operation yet)...
3/2/21, T4 level 22.1, TSH level 0.74
27/2/20,T4 level 24, TSH level 0.84
20/3/19,T4 level 17.8, TSH level 1.2
22/5/18, T4 level 18.4, TSH level 18.4
26/7/17, T4 level 18.6, TSH level 0.43
20/5/16, T4 level 20, TSH level 1.6
30/9/15, T4 level 19.4, TSH level 0.31
23/6/15, T4 level 21.4, TSH level 0.05
Why do you say they contradict each other ? 'Subtotal' and 'Partial' both mean 'an amount of thyroid tissue was left' .... even if it's only the little bit that forms the bridge between the two halves
If it was a 'full removal of absolutely all thyroid tissue' the procedure is called 'Total Thyroidectomy' ..... they would probably do that for cancer patients to make sure absolutely all tissue is gone.
So it does seem as though technically you GP was correct and you had a "partial or subtotal" but that doesn't necessarily mean the amount you have left is big enough to be of any use.
Partial thyroidectomy ,I is the removal of one of the lobes of the thyroid gland....sub-total thyroidectomy , is most of the gland being removed leaving a small remnant in situ t
do they sometime use "Hemi-thyroidectomy" for when they take one half off ?
I was wondering if 'partial' is sometimes used interchangeably for 'sub total' depending on who is writing it , in the same way we often see "supressed TSH" is used for quite different definitions of TSH levels depending in who is writing .
Some Endo's will write 'supressed' for 'anything below range' but some some will only write 'supressed' for <0.001,,and write low for anything in between.
But presumably your surgeons description of 'subtotal' is the more accurate since he was there when he did it... unlike the GP .
22/5/18, T4 level 18.4, TSH level 18.4 ....this one looks like it might be a typo ?
it would be an unusual coincidence to get an fT4 and a TSH at exactly the same result... and more to the point you 'usual' TSH is under 1 and has been for years. so TSH 18 is unlikely (but not impossible) .
Please could you add the lab range for the fT4 results ? it will be after the result in brackets eg. [12-22] or [10-19] or something similar .... so we can see if your fT4 was over the top of the range.
Also please can you add the TSH range.
Please Can you add information of any Levo dose changes that were made after these tests .
eg.
Was your dose only reduced recently on the basis of the surgeons request .. or have you had other reductions previously?
What dose were you on for last test in *Nov and what has dose been reduced to now?
Yes sorry THE 0.52
Did you say the GP has 'halved your dose' ?
....is this since the November test ? You results over those years do already do look pretty 'stable' .. but arguably you levo dose has always been 'a little bit too high ' [depending on the fT4 range].
So a very small dose reduction might in fact be a good idea and you might even feel better for it .. but 'halving it ' sounds a bit rash and totally unnecessary ..and is likely to make you feel unwell .
edit ... But some anaesthetists don't like to do operations if thyroid results are not to their liking. So you may need to at least get your TSH /fT4 into range before they will agree to do it. but this might only need a very small adjustment of levo dose... not halving it .
Hi I know all this ... I have been on medication for over 30yrs , I was put on 25mg Thyroxine straight after my op, it increased , finally settling on 150mg Thyroxine , until approximately 7/8 years ago and its been getting reduced.
Oh , ok .... so it's been reduced gradually over several years ? I though you meant it had been the same dose for years and they suddenly halved it after the November test .
Levo does sometimes need reducing over the years, as our needs / activity levels change...... eg menopause can cause a change in dose required for many people.....i was on 150mcg for about 17 years but then after menopause i became overmedicated on that and only needed 125 for about 3 yrs and then fT4 went very over range and kept going higher and so now i only needed 112.5mcg .
Your results from the last 7 years all have fT4 quite high [range?] and TSH fairly low so it looks like your dose reductions over those years were probably appropriate. if your dose hadn't been reduced a few times your fT4 would be very much too high now. .
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