Hello everyone been having hell with my NHS GP over my hypothyroidism condition and high blood pressure and other medical problems including palpitations and muscle stiffness . seen by a doctor who was very unhelpful and rude saying over 140 over 92 is normal . Then the doctor said 100 mcg of levothyroxine is dangerous .Made a email complaint and sent it to the practice manager .Just wanted to know what to do next ? anyone else had similar problems?
Made a Formal Email Complaint To My GP What To ... - Thyroid UK
Made a Formal Email Complaint To My GP What To Do Next ?
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Den1987UK
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Then the doctor said 100 mcg of levothyroxine is dangerous
In the average hypothyroid person the final dosage of T4 is roughly 100mcg - 200mcg. These figures are given in the latest NICE guidelines :
cks.nice.org.uk/hypothyroid...
[My emphasis]
How should I initiate and titrate levothyroxine?
The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
Hello humanbean I think I agree with you on the emphasis of treatment of hypothyroidism unfortunately some doctors would rather let you suffer than get better. I think my TSH was 2.23 which is on the high side and T4 was 18.900 and T3 4.700 so cannot sea 100 mcg of Levothyroxin being dangerous. I don’t think my doctors surgery knows what they are doing at all.
For example blood pressure not being treated or dealt with hypothyroidism not being adequately managed or treated and a total lack of regard for patient health at all.
I think there are many, many surgeries treating patients the way you are being treated these days. As far as I can work out the government wants to create an NHS which is absolutely basic and only covers some emergency medicine, and anyone who wants any real treatment, particularly for chronic conditions, will be forced into paying to go private.
Hello humanbean yes I agree with you it would seem unfortunately is going down the toilet fast and that I think is not in anyone’s interest. I just read the link you provided and clearly states to offer treatment if 140 over 90 or higher. Thing is nothing was offered and attitude was could not care less and attitude was atrocious to the least but I kept my calm and was still polite even though the doctor was definitely not. My mum was the same has multiple serious conditions and was told by a doctor through a telephone consultation that I only have five minutes so hurry up and make it quick and the doctor was late very late phoning my mum and this is the same gp surgery I am at. It has been getting worse and worse in the last year and not better. I gave up smoking and don’t drink alcohol or use illegal drugs and but not sure what else could be causing it.
I do not think that rudeness and inconsiderate GPs has anything to do with the government ,they may be dissatisfied by the job but that it no excuse for bad behaviour.
True - but many people under severe time and financial pressure can get nasty, and GPs are no exception.
Hello Treepie good afternoon no I agree it ain’t no excuse supposed to treat the patient with dignity respect and manners and not like crap. But it’s like humanbean has said they are under financial pressure and strain and under pressure from the thousands upon thousands of patients they see. Still you can’t take it out on the patient that is against NHS policy and guidelines and rules and all it will do and is doing is putting pressure on hospitals instead because patients will go there instead.
Regarding high blood pressure / hypertension this link may be of interest :
Title : Hypertension in adults: diagnosis and management
Published date: August 2019
I've never read the above guidance so I've no idea if your doctor is doing it right or wrong. I must admit I personally don't want to go on medication for high blood pressure if I can possibly avoid it - I remember the problems my late father had in getting treatment for hypertension that he could tolerate.
I'm hoping to find ways and means of keeping it low enough for good health without prescribed drugs.
SlowDragonAdministrator
New NICE guidelines are clear on dose by weight
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Weigh yourself in kilo and multiply the number of kilo by 1.6 to give an approximation of dose of Levothyroxine required. Some people need more
For example if weigh 10 stone that's 63.5kg
63.5 x 1.6 = 101
So dose of Levothyroxine is likely to be at least 100mcg
Only increase dose upwards in 25mcg steps.
Hello Slowdragon good evening Thank you for replying I agree this should be the policy followed but at the gp surgery I am registered at this is not being followed correctly. I was on 50 mcg of Levothyroxin for 1 1/2 years and only about 4 blood tests in that time and not full blood tests either. At the end of last year I went down with mononucleosis and it went downhill from there. Brain fog anxiety shakes chills sweats palpitations fast heart rate and pulse and high blood pressure and feeling very unwell. I was then told by the doctor at my gp practice to increase to 75 mcg and was on this dose for 4 months and no change and was still the same so blood test done forced by me to do it full thyroid tft including FT3 so was again told to increase again to 100 mcg and follow up with another blood test on 25th February.
If you have been doing well on Levo, (Up till now) then I would not be too concerned about increasing above 100 mcg. I wonder why the doctor is not concerned about the damage that high blood pressure brings?
The concern for me lies in why the levo dosage has stopped working so well.
Isabella Wentz has recently brought out the four stages of autoimmune thyroid disease or Hashimoto’s. When TSH increases and blood pressure along with it and yet higher doses of the medicine (Levo, for instance) doesn’t bring TSH down (which is unfortunately, all the doctors look at) - then we have more serious problems. The Levo / T3 T4 crutch can begin to fail for some of us - and the state of medicine in this year 2020, for thyroid patients, is abysmal.
Do you have Hashimotos? If not then increasing the levo is going to be less of a problem then having high blood pressure.
It’s so hard to navigate the medical world that either can’t or won’t address the underlying causes of thyroid problems.
What we have found is that the gut and the liver are huge players in autoimmune thyroid disease. When we can find a doctor that will help us address those in gentle ways then we’re really making progress. The medicine in the meantime, we must have. But it’s just a crutch and we must mend what is broken (gut / liver) or risk progressively worsening thyroid / autoimmune disease.
For me levo didn’t work at all. (I have Hashimotos and the MTFHR Polymorphism) And I know you have trouble there in the UK getting any kind of T3 T4 combination medicines. It’s getting worse here too in the US - they’ve raised the price recently by tenfold. But that’s what I have to have and it too is just a crutch.
I have recently had the same issue, (sounds similar to yours) with it (NatureThroid) I can’t take enough T3 T4 to get my blood pressure down and I’ve got much more serious blood pressure than you do. It only comes down when I behave myself with clean eating and drinking habits.
So now I am really forced to address the liver and the gut issues. Forced to give up all kinds of fun things like wine and black tea and grains. Forced to really heal and get into a remission kind of place, right? (What a whiner!)
If only there were knowledgeable doctors that could help you and me through this. They are out there but they’re so very hard to find.
There is some interesting research coming out of Canada (Thyroid Patients Canada) and yes Isabella Wentz who is primarily interested in selling her supplements and yet she gives away a lot of helpful, healing information for free.
I wish I had better news for you. There is great relief in finding a doctor or a health practitioner or someone who really knows what thyroid disease is all about.
Hello dtate2016 good afternoon thank you for replying. You are right the state of care and compassion and treatment is unfortunately dying on the NHS. My results are not too bad TSH 2.23 FT4 18.900 pmol/U FT3 4.700 pmol/U and apparently convert 65 % 60 % problems are my doctor has not got a clue ever I have had hypothyroidism for 2 1/2 years for a year 1/2 I was only on 50 mcg a day of Levothyroxin and at the end of last year around October I went down with mononucleosis and suffered very badly. After this the brain fog bad memory forgetfulness and fatigue set in it’s like the hypothyroidism suddenly went very bad. I was told by my doctor to increase to 75 mcg a day and was on this dose for 4 months and no change and now on 100 mcg slight improvement. I have Tachycardia high blood pressure muscle stiffness and spasms and anxiety and depression and Raynaud’s disease of which no medication has been given for the high blood pressure or Tachycardia or Raynaud’s disease nothing has been done and nothing prescribed for either conditions. I am 32 only. Also the other day on Wednesday 8th January I arranged for an appointment for my mum who has Arnold Chiari Malformation pressure on the brain affecting the spine prolapsed disks in lower back heart failure diabetes fibromyalgia lymphedema carpal tunnel syndrome and Raynauds same as me because she is getting whole body tremors and trembling and couldn’t get a telephone appointment TIL the next day 9th and when the doctor did telephone my mum she was very rude and said to make it quick I only have five minutes and could not deal with multiple problems and didn’t know what was causing it and have you tried to look online. Same as myself I arranged and booked an appointment and had to sit in the gp surgery waiting for 25 minutes and when I saw the doctor again rude and didn’t care about my high blood pressure or the hypothyroidism and instead said 100 mcg was a dangerous dose. That is ridiculous in my opinion either they are not trained at all or just don’t care in my opinion. Also prescribed anti biotic for ear infection I have and antibiotic ear spray does not work tried it already and having to wait to go through practice manager formal complaint to get the infection sorted. I don’t drink never have and don’t smoke now since a year ago. Recently my brother has been diagnosed with same condition hypothyroidism and archaic heart condition hole in his heart and asthma my brother is 42 10 years difference between us.
Mononucleosis is caused by the Epstein-Barr virus I do believe. Epstein-Barr, after you have healed, leaves residual virus particles and can affect your thyroid tremendously. One of the best things I have used to help with my thyroid and make me feel better is proteolytic enzymes. If you did not already have auto immune thyroid problems before the mononucleosis, the chances are high you have them now. it would account for the forgetfulness and yes the tachycardia and the high blood pressure and the muscle stiffness you definitely the need for more thyroid medicine.
Find a good proteolytic enzyme brand - it doesn’t have to be expensive. Go slow whatever you do. If the label says take 2 to 3 a day, my advice is to take one to start off with. Do that for a couple of days and then increased to two and see what happens. The proteolytic enzyme‘s may well help clean up the mess left over from the mononucleosis. Your own body will do this too, but if you have a little help with the proteolytic enzyme‘s you might feel better faster.
Research is showing every day that Raynolds disease, fibromyalgia, and many other diseases that we never heard of before the last 30 years, all are auto immune disorders. And when we have one auto immune disorder, if we don’t care of the root cause properly, we’re likely to progress and acquire two or three more. Again the liver and the gut have to be treated to feel better even if you’re taking the medicine.
I learned about proteolytic enzyme’s here on HU - and you don’t have to take them every day in fact, some say only take them while you’re healing say for 10 days or so. You can definitely overdue them so again exercise caution - but you would not believe how much better you will feel! Anyway if you’re anything like I was. They may well help your mother too!
What we do have control over can make a world of difference but it takes time. I would highly recommend you and your mother become gluten-free as soon as possible. (I don’t think we’re going too far out on a limb to safely say there’s a genetic reason the two of you both have auto immune disorders) Takes 21 days for the body to clear itself of gluten, even a tiny little bit, to get out of your system. They are treating fibromyalgia with T3 and T4 here in the United States even the veterinarians are giving it to dogs and animals - in fact it’s easier for the dogs to get thyroid medication than it is for humans can you believe that?
And still thinking about that, what is it that many health practitioners are advising those of us with thyroid problems, what is it that we have in common, yet unnatural with a diet that’s fed to dogs? Grains. Dogs are not meant to eat corn or wheat. But it’s 30 to 40% of commercially prepared dog foods here in the states.
And personally I don’t buy the whole Paleo diet thing however, I do know that those of us with thyroid problems are advised to get off of gluten, get off of all grains for that matter - and it works. I think it’s more likely that the grains we are eating are full of proteins from GMO altering and much like the mononucleosis, there are residual pieces of proteins that we can’t digest, that triggers auto immunity.
The proteolytic enzyme’s digest proteins help us digest proteins even in the bloodstream.
That is criminal what you went through - stay tuned here and keep asking questions and take the bull by the horn‘s and do what you can to heal yourself. (And your Mom)I highly recommend the book Dirty Genes, by Dr. Ben Lynch. You already have a Headstart if you don’t partake of alcohol! It’s hard to leave grains alone but there’s a whole other world of food out there.
Hello dyate2026 thank you I think it’s what I and my mum need to do. Only thing I can think of is congenital hypothyroidism because my mum has various conditions then there is 3 of us brothers in total one has no symptoms at all and has no problems but me and my other brother have hypothyroidism and many problems. So 2 out 3 brothers have the same hypothyroidism condition and associated conditions. That’s what makes me believe it could be congenital hypothyroidism but not showing when we was younger instead showing up now in middle adulthood .
If both you and your brother have hypothyroidism, likely your mum does too. Most likely Hashimoto's Fibromyalgia is often linked to low FT3
Well done on giving up smoking, it's common to need increase in Levothyroxine within year or two of giving up smoking, especially if have Hashimoto's
Thyroid levels should be checked more frequently in 2 years following stopping smoking
verywellhealth.com/cigarett...
Good you finally are getting dose increased
Come back with new post when you get Full Thyroid and vitamin testing 6-8 weeks after increased to 100mcg Levothyroxine
Mononucleosis is usually caused by Ebstien Barr virus - EBV
Links re EBV and Hashimoto's
thyroidpharmacist.com/artic...
drhedberg.com/epstein-barr-...
hypothyroidmom.com/hashimot...
drchristianson.com/epstein-...
Hello Slowdragon good evening Thank you I will take a look at the articles and thank you for the support I appreciate it . You could be right about my mum having hypothyroidism but even if my mum doesn’t have it I know congenital hypothyroidism can be a factor because there is 3 of us brothers in total and two out of three of us have hypothyroidism. I think it works that you have your mum and dad both carriers of certain chemical and then if you have 3 children then two out of three are likely to have it and one is perfectly normal as in my third brothers case he is totally unaffected. I think there are two types of congenital hypothyroidism one where the gland is backwards and one where the thyroid gland is normal but not producing enough hormones. I it’s a possibility if my mum has no signs of hypothyroidism that me and my brother have the later type thyroid gland in the right place but not producing enough hormones. But I would have thought that they would have picked that up at birth.
Most hypothyroidism that runs in families is autoimmune thyroid disease (Hashimoto's) this has strong genetic link
Autoimmune thyroid disease develops slowly. Often starts at puberty
Here’s a link to advice from Which UK - which.co.uk/consumer-rights...
The Practice website should have it’s complaints procedure available for downloading. Currently helping my Mum make a complaint re levothyroxine dosage and ignorant GP refusing to increase dosage despite severe hypo symptoms and great improvements following dose increase.
Mum was on 150mg reduced to 125mg (Tho idiot nurse misread it and prescribed 25mg. I kid you not...that was a battle a few years ago) and been stable. Blood test last year had them reduce dose to 100mg but the side effects were grim and textbook.
‘Advanced nurse practitioner’ examined and talked to her (I was present coz mums memory was so poor and her mobility was really bad due to how severely her ankles and feet were swollen) Nurse (who we thought was a GP. Long story) prescribed extra levo and said she’d altered the repeat script info on the system. This was 4 wks ago. Improvement has been almost miraculous. Unfortunately ignorant idiot gp is refusing to do this and has reduced script back to 100mg based on blood test done in August (which isn’t even the most recent test) and is ignoring symptoms. Mum’s had numerous battles over the years. A GP misread blood test results once and the fallout from that was horrific and life altering...point is she’s had experience of being both under and over medicated for 50+ years so knows her own body.
Sorry, I’ve rambled on too much.
Re nhs complaints procedure. It’s a bit of a lost cause tbh coz they won’t ever admit they don’t know something or did anything wrong.
But...it can concentrate their minds.
I had treatment problems when my gp retired. (I have Fibro and PHN) In the end I did some research and asked to be referred to a pain consultant by name. Now I’m under the care of the Walton Centre things are a bit better re gp interactions. My BFF has changed gp surgeries three times and finally found one she can live with. She has MS and Fibro amongst other things.
If complaint doesn’t get result needed we’ll request referral to consultant. Then whilst waiting for that we’ll research what practice to switch to. Online reviews etc will hopefully help.
The nhs is broken tho isn’t it? Hard to cope with and of course stress makes any illness worse.
Good luck.
Hello Alepar good evening thank you for replying yes I agree it is very hard getting anywhere with doctors or other medical staff . I am sorry what your mum and yourself went through . Very similar to myself and my mums battle with the NHS GP Practice we are signed up to. Just have to fight for what you want lately which is ridiculous and with rude doctors and staff it is a lot to contend with and I agree it's huge stress and can make pre existing problems and conditions much much worse . The online reviews of the doctor surgery I am signed up to has got worse and worse in the last year . Has become even worse since I signed up in 2015 doctors and nurses always late never on time longest wait was over an hour . then you have lack of interest in your medical problems and conditions and bad manners by doctors nurses and staff . But I know not all doctors and other staff are like that but there is a few at my doctor surgery . Still at least I have got the ball rolling and hopefully will get the reasonable response that I need to make my mum and myself better if not then I will take it further .
thank you Den
Alepar
(Like your avatar)
If you have fibromyalgia this strongly suggests low FT3....frequently linked to hypothyroidism, especially Hashimoto's
Recommend you get FULL Thyroid and vitamin testing via Medichecks or Blue Horizon
Insomnia linked to low vitamin D, low FT3 and low B vitamins
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thanks for the info.
Last NHS thyroid test was normal as usual - on the rare occasions I can force them to check my blood I request that due to mums problems. Despite how many pain meds I was on for over a decade I always had to force them to check my liver function etc.
Due to constant digestive problems I’m intermittent with my vitamins etc habit but I do wonder occasionally if my b levels in particular are sufficient... Confess too that I’m usually more focused on others health than my own, so appreciate the nudge to look into how I can help myself.
Thank you 
NHS rarely tests FT3 or BOTH TPO and TG thyroid antibodies
Always do blood test as early as possible in morning before eating or drinking anything other than water
Make sure all four vitamins are optimal for at least 2-3 months prior to any thyroid blood tests
Ideally all four vitamins need to optimal all the time. This may mean supplementing continuously. Retest at least twice yearly
Digestive issues extremely common hypothyroid symptom
Few links about fibromyalgia
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
thyroiduk.org.uk/tuk/relate...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
clinicaltrials.gov/ct2/show...
holtorfmed.com/download/chr...
healthrising.org/blog/2019/...
Thanks again SlowDragon 
Hello Alepar good afternoon I would say to get your blood test done for FT4 and FT3 and antibodies with medichecks or another private blood draw or private doctor. I have started having my blood test done via medichecks because there is a medichecks clinic where I live off the high street luckily. Prices are not bad but if the NHS actually done the blood tests and cared we would not have to do it. We are are our own advocate in ensuring we are well these days unfortunately. I let the NHS doctor I am signed up with do his own tests normally just TSH , but also do my own via medichecks once a month now to make sure all is well.
You only need to do Medichecks test 6-8 weeks after any dose change
Unless suspect levels have changed
once well and stable ...perhaps twice year if taking supplements
Or annually if just on Levothyroxine
Hello Slowdragon good afternoon just taking Levothyroxin only, but the side effects are nuts so do mine every 6 weeks that way I know every month the dose is right. My doctor does it every 9 weeks. I agree the 6 to 8 weeks rule is good but has flaws because things could change in a month the FT4 and FT3 levels for example stress flu colds infections etc could cause problems and could make the hormones too low or too high . I think the rule needs to change to monthly every 4 weeks. That’s why I let the doctor do his TSH only test every 9 weeks and I do full test every 6 weeks including FT4 and FT3 and keep all the results and study them so I know I am okay and near the top end of my vitamin levels and thyroid levels and even when there is discrepancies with the doctors results and mine I can see what the difference is and if needed correct problems.
That's far too frequent....and costing you too much money
Levothyroxine dose shouldn't change much....I know you were under medicated and now on increased dose
There's zero point testing until 6-8 weeks after any dose change...personally I try to wait 10-12 weeks
It takes a LONG time for each dose increase to have full effect and to settle
Don't test until 6-8 weeks minimum after any dose change
Hello Slowdragon good afternoon that’s what I do I do the blood tests every 6 weeks sometimes 7 weeks if I am busy full thyroid function plus FT4 and FT3 not just TSH like my doctor does . But my doctor does the TSH only nothing else every 9 to 10 weeks. For 1 1/2 years on 50 mcg of Levothyroxin I was tested only 4 times! So for the 2 1/2 years since I was diagnosed 1 1/2 years of the 2 1/2 years the hypothyroidism was not being managed properly . No paperwork given on how to manage the condition no dietary advice or medication advice or management of long term condition advice either. Just given the diagnosis 2 1/2 years ago and no medication to start off with only put on medication 2 weeks later. Just was given a small piece of paper and a picture from the internet of the thyroid gland the rest I had to look up myself eventually. Unfortunately the NHS is dying in my opinion and we are the best advocates in looking after ourselves. It will only get worse as the problems with my NHS GP practice is proving. It took 4 years for the NHS to diagnose my other condition a blood disorder. Don’t want to ramble on but I had a private pension from when I used to work for 12 years and have used most of it getting well again because can’t get my GP to do anything much and have had to have private scans and tests done at my expense . I cannot drive manual cars anymore and have automatic car and mobility scooter all at 32 years old because of knee joint problems joints giving way arthritis had bone marrow checked and was all good no problems . Even though I can get treatment on the NHS they or my doctor won’t pay for certain tests and scans too expensive and quote not in their budget .
Currently Thyroid treatment is appalling.
Yes I only made progress after joining here and getting FULL Thyroid and vitamin testing
Hello Slodragon good afternoon I agree the treament on the NHS currently is very appalling . Having to pay for private scans tests and treatment is ridiculous and goes against the NHS constitutional policy to care and provide for all patients .
Hi, I am on 200mgs it is not dangerous if you need it (I don't have thyroid). I would record all your symptoms, research as many facts about dosage and symptoms. Also blood tests can come back within range but symptoms still present. Take all the information to your GP . Some GPs are better than others when it comes to treating thyroid problems.
Get second opinion as I’m on 225 mcg daily....
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