does anyone have any experience or success in getting their GP to review levo dose based on t4/t3 levels and not just ths? My TSH was 0.5 so GP reduced my levothyroxine from 112mcg to 100mcg daily. I had bloods done privately that showed the following: Tsh 0.28- range 0.27-4.2, T4 17.8 - range 12-22 , T3 3.77 range 3.1-6.8.
Correct me if I'm wrong but say those results show I need more levo or T3 adding rather it be reduced by 12mcg daily.
I was also hauled in to see the practice nurse as my cholestrol is high. I tried to explain there is a link between high cholestrol and hashimotos. She spoke to the GP who had reduced my levo dose who said I need to take statins! Luckily I've had this condition for years and have done my own research and refused the statins and asked her to look into other causes of high cholestrol like for example hashimotos! Her response was she didn't care what was causing it, if I didn't take statins immediately I'd have a heart attack or stroke within 10 years and die. I thanked her for imparting her opinion and left! I'm now thinking of seeing an Endo privately as I've given up trying to talk sense into the GP.Any ideas of what I could do next would be greatly appreciated
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No, I'm afraid I don't. But, whatever you do, you're not going to influence your GP. He wants you to take statins because the surgery gets financial incentives for prescribing them. He doesn't actually know anything about cholesterol, except what some Big Pharma rep has told him, and he cares less. And the BP rep wants to sell statins. It's all about money.
I doubt an endo would have much interest in statins or cholesterol. Most endos are diabetes specialists with some weird ideas about thyroid, but very little knowledge. So, know your endo before you commit yourself and spend your hard-earned money!
I was hoping an endo might look at T4/T3 ratios and give an informed opinion of whether I should take T3 as it's just in range but low. I'm was also diagnosed as prediabetic last October. Again I explained I don't fit the profile of a type 2 diabetic and having 2 autoimmune disorders meant it could possibly be I'm developing type 1 diabetes. You guessed it....deaf ears.
Well, you might find a good one that will help with the diabetes aspect. But, not all of them would recognise poor conversion. And some of them are vociferously anti T3! So, you should seek out one that is pro-T3.
I’ve just seen you’ve mentioned you’re pre diabetic as well as high cholesterol.
On my pack of Morningside T3 medication (pic provided) it states a warning as can raise blood sugar.
I appreciate some of this information can be outdated but given there’s a warning in my experience as it’s there it may possibly go against having T3 prescribed (endocrinologist to decide that based on your overall health), they may want you to address and reduce your blood sugar, and by reducing blood sugar it could help cholesterol too.
I have quickly looked at correlation and can see it’s been mentioned now too and seems the thyroid link is mostly connected to liver and although having your thyroid in right place with adequate medication can help all.
I’m sure my GP/endocrinologist would ask me to get few areas in a better place beforehand.
So your blood sugar might be an area to look at to help everything, as you need your hormones to balance.
Adjusting sugar and starchy carbs in your diet is the area to help this.
The Glucose Goddess has a few tricks which can definitely help and quite quickly.
I too had slightly high blood sugar 6 yrs ago now, not quite pre diabetes but adjusting my diet did the trick.
I have coeliac disease, hypothyroidism/Hashimoto’s and pernicious anaemia, I had thought Type 1 before now I have few autoimmune conditions.
I’ve had episodes of hypoglycaemia but blood sugar tests says different and once I reduced my blood sugar this area is a lot better… I think I was just getting a warning, of metabolic disease.
I needed to ditch the gf processed rubbish which is worse if anything, than gluten processed foods.
Rubbish. GPS do not get financial incentives for prescribing statins for patients with hypothyroidism. There are quality points for prescribing statins to patients with diagnosed heart disease and points for getting cholesterol down ( by any means) for patients with diabetes. No QoF points for hypothyroidism at all. Where is your evidence that they get paid for prescribing statins?
Hypothyroidism was taken off the Qof register in 2014. Hyperthyroidism or oher autoimmune diseases were never on it. I used to send out the letters sent each quarter when I worked at a surgery, each quarter.Even if there were any urgent letters that needed typing they had to wait while I stuffed letters in envelopes. If not done on time the didnt get their quarterly payment. Not a good idea to put patients on statins who are hypothyroid according to their own policies.
Thanks for this link. QoF was introduced in 2004 and was intended, as it says in the article, to reduce the incidence of some diseases and the burden they produce, reduce hospital admissions and deaths as well as costs. It was supposed to be evidence based and was based on things that could be measured so it could be a box ticked on a computer spreadsheet. Cholesterol levels are widely seen to be implicated in heart disease and diabetes and bringing these down in these groups is rewarded, not specifically the prescription of statins ( except in people who have had a heart attack where it has been shown to be beneficial).
When QoF was introduced, money was taken out of the GP contract to pay for it but it was also a top up. The value has been reduced consistently year on year since and the amount of work required to earn the points has been raised each year. It was designed to make GPS up their game and the government clearly believed that it would work.
It has been a complete disaster and has forced practices to focus on QoF issues at the expense of issues patients want to raise. It is easy to get an appointment for a diabetic check but just try getting one to discuss a problem you have. So much time is wasted chasing targets that there is no time left to address patients’ concerns.
The people who have created this are NHS England, dept health and the Royal college of GPS. Nothing whatsoever to do with drug companies paying GPS.
I completely agree that the current system forces practices to prioritise the wrong things with very little benefit and great cost and the reduction in life expectancy may well be due to GPS not having time to look after people properly any more.
The whole system needs an overhaul
With GPs being allowed to think for themselves again without being forced to follow a protocol.
I don’t hold out much hope though as the government want to increase the use of IT and so called “preventative medicine”/ medicine by numbers.
You are correct. The whole system needs to change. I don't med/drug companies being able to dictate price & who ??? gets the thyroid meds they need? I am in the US and have to self pay for my NDT, not easy on a budget. I do feel I am worth it. Natural desiccated thyroid was "grandfathered in" but not approved for medicare. what BS. It is everywhere. All about the $$$$.
I had been undermedicated for 5 years. I picked my doctor - a listener. He admitted he knew little about thyroid. I produced a sheet I had prepared and convinced him.The endo had signed me off 9 months previously. They were pleasant but useless which meant I could present my case with passion and convince them I knew what I was talking about .
I guess an advantage of not being able to book to see a GP face to face for weeks anymore is you get to present your evidence via an online consultation. I'll go with that and see what happens
thanks for the advice Lalatoot. I have been plodding on for years not feeling great as it's a constant battle to not have them change my meds based on TSH alone. I'll take my time and put together a thorough argument for reviewing my meds based on symptoms and my levels not just TSH.
The NICE guidelines specifically say that statins should not be used for the treatment of high cholesterol in hypothyroidism before the thyroid is adequately treated. I had a high cholesterol ( and was offered statins that I refused) and it dropped from 6.2 to 5.2 and triglycerides from 7.2 to 2.7 after 3 months on T3. I am so sorry your nurse/ GP are unhelpful/ uneducated and would genuinely suggest you see a thyroid friendly endocrinologist and investigate T3. Good luck.
Thank you Mollyfan, I've sent an online request to the GP explaining the link between low T3 and raised cholestrol. I have asked him to consider prescribing T3 or referring me to and endocrinologist. Fingers crossed he'll listen. If not, I'll find an endo myself for a consultation.
my levo was reduced from 125 to 112.5mcg which it turned out was (eventually) an improvement. However in the meantime.. it was further reduced from 112.5mcg to 100mcg
I said i really didn't want to reduce further ,but the GP said if i didn't reduce to 100mcg "you'll die "
I didn't really think i would die , but after a while the thought of a stroke worried me enough to try 100mcg.
(in my case even though my TSH was under range (0.04) , these reductions were prompted because my fT4 had gone up through the roof, and went up further despite the reduction to 112.5mcg)
after 6 weeks on100mcg i went for my blood test and ranted to the phlebotomist that i would be putting the dose back up myself the next day due to the chronic constipation, with no bowel movement for a week, and food was just sitting in my stomach like a stone, and being mentally dopey to the point of nearly getting run over crossing the road.. all symptoms which i had developed over the 6 weeks on 100mcg.
This prompted a 9am phone call from my GP on a Sunday morning.
He was 'concerned' but eventually said he didn't want to make me unwell and said i could put it back up to 112.5mcg, or 125 if i wanted.. he has put a note on my file to say that i understand the risks.
My fT4 later came down by itself . and i've kept out of the GP's way ever since.
I'm all for trying different doses if it's for the right reason but it's rarely the case. I too stayed out of the way of the GP which was easy during covid 19 as they weren't interested in anything else but I got a call from the receptionist a few weeks ago saying I had to book a blood test. The outcome is in the original post. I was ok on 112.. Not brilliant but now I'm becoming more symptomatic since it has been reduced. I was hoping a good endo would point me in the right direction but I'm beginning to wonder now how much use that would be.
"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".
* NOTE this one also clearly states that raised cholesterol is caused by hypothyroidism *
"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).
If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .
from PULSE magazine for GP's... The article is available from ThyroidUK
If you want a copy of the article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
i could understand them freaking about about mine... my TSH had been 0,04 ish for over a decade with fT4 in range , but then my fT4 went up to 20 then 22 on a [7.9-14] range which is 206% /242% ...... but i can't understand what their problem is with you having a TSH of 0.5 .. lots of NHS GP's would be perfectly happy with 0.5
I know, it's crazy especially as I've been having the same argument since 2017! You'd think they'd be happy their patients take responsibility for their own health and would be happy to listen to us when we've been living with it for so many years. Like you say if all the other ranges were wildly out of sync I could understand it. They completely ignored me for 2 years during the covid debacle and now change my meds without any discussion!
It will help if you make it clear that the symptoms you get on the lower dose are clearly recognisable (even to an unsympathetic GP) as obvious hypothyroid symptoms (like constipation /cold etc) .... weight gain/fatigue are too 'non specific' and are unlikely to get any sympathy.
Then also make it clear that you have properly researched, understood and accept the 'risks' (as they see them) of low TSH ( heart / bone ) but that your quality of life is more important to you.
And also make it clear that you are aware of the physical signs and symptoms of overmedication, and would of course want to reduce your dose of you felt any of them (feeling too hot /faster heart rate / fine tremor in outstretched fingers/ feeling agitated /overanxious/ over frequent bowel motions)
Hi SlowDragon, I have pernicious anaemia so have b12 injections every 3 months. I was prescribed ferrous sulphate for low iron but struggle with it as it upsets my stomach. I haven't had vit D checked for years. It was low when it was checked and I was out on a 6 months course. I was tested for coeliac at the time which came back negative. I tried going gluten free for about 6 months but it didn't seem to make a difference. I limit my dairy intake to milk in my tea and the odd pasta bake. I haven't tried the dairy free products so will give them a try. That's really helpful to know private prescriptions of T3 are available, I didn't know that and assumed the GP would have to agree with an Endos recommendation. It's the same GP who always wants to reduce my levo. The others seem ok with it but it was she who received the NHS blood results and took the 25mcg off my repeat prescription without even talking to me first. I have tried many times to explain that I know what it feels like when I'm on too much levo but they default back to the TSH range. I'm going to print off the information I have received here and have it at the ready if the GP rings me. I'd be happy to bin off the GP and monitor my own condition(which I do anyway) but need them to prescribe levo. I don't have a fitbit but there's an app on my phone that shows some health data. Not sure if it shows heart rate but will have a look. Thank you so much for your help, I feel armed with knowledge and knowledge is power!💪
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle
Keep good records of resting heart rate, exercise levels etc
These can be used to demonstrate, despite low TSH, that you are not over medicated ….especially if resting heart rate is low
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. "
Many many thyroid patients have suppressed TSH at 0.01-0.04 and are not over medicated ………provided Ft3 is not over medicated
Hell, do I understand your problem. I have an underactive thyroid but not Hashi.
I have had problems with GPs etc. I was prescribed a very a high dose of levo many years back and it has suited me very well. When I joined new surgery, the doctor went ballistic when he saw my TSH and T4. A good idea to see other doctors in the surgery from time to time, to see what their attitude is. They are all different. I walked out the consultation with this doctor. Changed my doctor and he was fine with my levo levels because I had no hyper symptoms. More recently, I was referred to an endo. On the phone, he too, went ballistic at my levo levels. I told him quiet firmly that he was looking at figures on a screen, not examining me personally. I told him I was fine, had no overdosing or hyper symptoms. He sent me for an osteoporosis scan and there was no sign of any problem. So okay. I then saw a new doctor at a new surgery and I told her rightaway what results she could expect at levo testing. I told her the results were normal for me. When the results came back, they were exactly as I predicted, so she accepted this and now no-one questions my levo dose.
One of my GPs phoned to tell me "your TSH is too low: your T3 is too high and your T4 is too low".
Me: "I know TSH is low and T3 is 'high' because I take T3 alone, so TSH will be low as will T4 as I take none.
He then said "but T3 converts to T4". No doctor that's wrong.
Re your post:
Excerpt from link below:-
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
I have poor conversion of T3 and it’s low like yours well it was a tad lower actually, but I’m now on T3 and things are getting better.I had to reduce my levothyroxine for 2 days see if we can balance it all.
I’m still at experimental stage with meds.
I don’t however have a cholesterol problem and never have at all so although I know there’s a link with cholesterol and thyroid on what I’ve read, the causation part I don’t know, in my instance the low T3 definitely isn’t a factor.
I believe and listen to Cardiologist Dr Aseem Malhotra , state to your GP what he recommends, show the GP evidence based information they can’t ignore.
He has a website.
Diet can play a part in helping lower, however it can also be hereditary.
I have eliminated all manner of things my GP has thrown at me over 8yrs and at present finally I’m trying to eliminate my thyroid for muscular skeletal problems , and adding in Liothyronine along with hrt I’m slowly getting there I think.
I found some information on how coeliacs can have conversion problems and as they’re not testing these Free T4/T3 they obviously are oblivious to say, and my GP didn’t disagree, but that area was beyond her knowledge, and I got referred. Although my endocrinologist doesn’t think my type of muscular issues sounds like a thyroid problem, the raise in my FT3 now I think is finally 12wks plus in is resolving some issues, I’ve had good few weeks now and getting back to doing more.
I’ve found doing your research and giving them proof, if you want to get anywhere with a GP, they’re often going on outdated information fed through a screen, guidelines that often need questioning if they are still useful as outdated too and go around the houses at that when it’s blatantly obvious a condition isn’t one area but that needs eliminating first 🤦🏻♀️
These guidelines are actually dumbing down the common sense and knowledge of many GPs , but their hands are tied in some areas.
You need to see an open minded Dr who will risk going out of line.
I’d be inclined to see another GP at the surgery if possible, hopefully a more understanding one, and say you would like to eliminate the fact there’s a connection with your thyroid before taking any other medication and surely it is always better finding the causation, than medicating another condition, given the side effects reported are high with statins.
If the thyroid hormones was in a better place it could help.
Maybe someone else has experienced this correlation in Cholesterol & thyroid and can give you their experience on how they resolved it.
After resigning myself to the fact that nobody I’ve seen (laughable, as not ‘seen’ anyone in person for years!) so far in the NHS hasn’t a clue about Hashis and just fixated on TSH levels, I’m booked in to see a functional medicine clinician. As part of my issue involves infertility, a double bonus that this consultant is also obs/gynae, works in the NHS part of the time (I’ll be paying privately) and areas of interest include thyroid and infertility/women’s health. Seeing her (virtually) early May.
For a year or so, I’ve been seeing a nutritional therapist who has repeated so many times Hashis benefit from someone functional medicine trained. I googled ‘functional medicine Hampshire’ and discovered her not far from where I live. On the whole, they’re all offering online consultations, so it doesn’t matter where you live. I also looked into the GP based in Bristol who has Hashis, but decided the other clinician covered my two bases better.
If you’re in a position to afford a few private consultations, functional medicine will definitely get you further than the traditional medicine fixated NHS.
I mentioned to my doctor about a test for hashimoto and he said it is a needless expense and the treatment would be the same . They just say I've got to have a blood test every 6 month then they will adjust the medication accordingly. The last time I had my medication changed I had to wait all day for a phone call for a doctor to tell me my blood results. He called at 5 pm after waiting all day and he asked ME what I Wanted. I said I'm waiting for my blood results. He asked what is up with me so I told him I had hypothyroidism. He said ok then asked if I was on levothyroxine and how much do I take so I said 50mcg. He then said ok so I will give you 75mcg am I happy with that. I replied I don't know I'm not a doctor but if you are looking at my blood results and have decided my rise in levothyroxine is based on my blood results then ok I am happy. He just ok pi will sort out prescription. Don't think he even looked at my results. Sorry I'm not helpful in any way but totally understand what position you are in.
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I don't think she liked that I know my own diagnosis and body better than she does. Thank you I'll have a look at the links.
Enquiring for a friend. Need help
Just been prescribed t3 and have a few questions…
advice on bloods please
Has anyone experienced Hyper/ over medication? If so, how long did it take you to recover?
