I had a second medical opinion via my works private medical service in relation to my thyroid results and full medical history.
The doctor produced a detailed report recommending that my GP switches me from 25 mcg of Levothyroxine to 50 as 25 was a ‘useless’ amount in his opinion to make much of a difference.
The second opinion report also referenced during my trial of levothyroxine, bringing my TSH down to the lower end of normal 0.5-1.5 and if my symptoms improve continue treatment.
My GP scoffed at this and told me anything below 1 was ridiculous and I should be aiming for within the guidelines of around a TSH of 2.5-3. I keep sending them all the guidance shared with me here and it seems to fall on deaf ears. They certainly hate me doing my own research and get irate if I mention the British Thyroid Foundations guidance.
I thought it would help getting a second medical opinion to push through with the correct treatment but my GP wants me on 25mcg until early November then to review bloods, apparently as my free T4 was at 14 the lower end of ‘normal’ she doesn’t want to increase the dose in case my T4 goes too high.
Any advice on the right things to ask/do or show my GP to get her on board with actually treating my symptoms rather than arbitrary numbers?
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EclipseMoon
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Standard starter dose levothyroxine is 50mcg unless over 65 years old, or heart condition
You might need to see different GP or endocrinologist if current GP doesn’t agree
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
If TSH level is above 10 then routine levothyroxine replacement is almost always indicated.
· Aim at full replacement rather than partial replacement.
· In a patient with no other comorbidities or cardiovascular risk factors:
· Age <50 and TSH <50 – give levothyroxine 100mcg once daily, then adjust as appropriate in 25mcg increments.
· Age >50 or TSH > 50 - give levothyroxine 50mcg once daily for 1 month, then increase to 100mcg once daily, then adjust as appropriate in 25mcg increments.
· Check TFTs for first time approx 2 months after reaching a dose of 100mcg daily
· In presence of known or suspected ischaemic heart disease or unstable cardiac arrhythmias or cardiac failure:
· Start with levothyroxine 25mcg daily, increase to 50mcg after 2 weeks if no adverse effects and then increase in 25mcg increments to 100mcg.
· The aim of therapy is a free T4 and TSH in the normal range (TSH typically in the bottom half of the normal range for optimum replacement).
· Once normal levels are achieved, TFTs may be monitored at increasing intervals and typically annually in the long term.
· Achieving a fully euthyroid state biochemically is important prior to any planned pregnancy.
· If TSH is >5 and <10 then a trial of treatment may be indicated if the patient has symptoms which might feasibly be caused by hypothyroidism (although in most cases they will not resolve and therefore be unrelated).
· Typically we recommend to commence levothyroxine 100mcg once daily in such cases.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
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 think I’ll get a copy of that article, it sounds very useful. It’s upsetting being told a TSH of 3 is normal based on a guideline, sure someone might feel ok, but I can’t tell how I’ll feel without going through all the motions and really lowering it down
I’ve got my next blood test booked for 8am on the 31st so I’ll wait and see what comes out of that. In the meantime I’m working on improving my vitamin levels.
Your GP is a sadistic d!ck who is doing untold harm. Scoff at him and change your GP - he is beyond clueless. My own idiot GP left me at the very top of the range and effectively told me to go away and rejoice when I complained that I still had symptoms at 75mcg (reluctantly increased from 50mcg) . The ineptitude of health 'professionals' in the treatment of thyroid issues is shockingly dire. I'm very sad to say that your GP joins a multitude of smug tw@ts who leave us ill and angry. The leading cause, IMO of women being left on inadequate meds is rank misogyny. A pox on the lot of them 🤬
😅 well, it is very true. I’ve suffered most of my life and it probably has been thyroid related. It’s nice to know I’m not alone in dealing with these issues and that we all have similar experiences. I’ve changed GP once before at this surgery so I may now try again! My mother was in the care of my current GP when she suddenly died at an early age, so it doesn’t bode well or fill me with any confidence.
I can top that, I'm afraid. I know of a man who died in the consulting rooms of my GP. He was begging for more help with his heart condition. I wonder how he copes with this on a daily basis, whilst telling I have no doubt, many women to rejoice and go away. There's a new GP in town at my practice...but I have my suspicions that she's the GP's daughter, doubtless taught at his lap. 😱 It's a wonder to me that we all don't crawl under a stone and die. Which is what they want. Look at that vicious incel Laurence Fox for an idea of what's said about us behind our backs. I freaking detest them and if there's anyone who needs to crawl under a stone, it's this posse. Forge on darling and Illegitimi non carborundum 🤗
Oh gosh that’s horrific. My mum died of heart failure two weeks after being told by her doctor her scans were fine, she in fact had pericarditis! I’d be a millionaire by now if I counted the number of times I’ve been to a GP to be told my symptoms are likely just because I’m a woman and lots of women have the same thing. 😶
I’d be a millionaire by now if I counted the number of times I’ve been to a GP to be told my symptoms are likely just because I’m a woman and lots of women have the same thing. 😶
Imagine...Doctor, I can't get it up 'Ah yeah, that's a man thing, I'm afraid, you'll just have to put up with it.' Can't recall? That's because within a few years, men in such a position (for what is really a recreational matter, to some extent...)had half a dozen different pills to take, not recommended for we women, obvs.
Doctor, my hair's falling out...' Here's some finasteride and some minoxidil full strength, errr not recommended for women.
We get horse urine (Premarin) men get shedloads of stuff which, if we had commensurate research done into mostly female health issues, might be a little more fair. Not in this lifetime.
Men. except for my husband and possibly yours, Diogenes, helvella and Charleyfarley... you don't appreciate the bum rap we get. A woman thing my big fat white @rse. Do better and hurry up.
Whilst I appreciate the rant, and agree with most of it. I have to point out that we haven't been given Premarine for many years now unless we specifically ask for it on a named patient basis. We have a lot of body identical HRT products available now. Many of them on the NHS. But we have massive shortage issues! And we struggle to get testosterone prescribed regardless of women producing lots of it in a lifetime. It's not licensed for women so they act dumb and say no, mostly. My GP is brilliant at just doing what the Menopause specialist asks him to do.
Well yes, but I chose to do that because I wanted knowledge involved in my prescription not just a "lets pick something from the book" which was the surgery option. However, many women see specialists, who then write to their doctors and ask them to honour the prescriptions the patient has begun only to have the GPs refuse point blank. So I consider I'm lucky in that my GP just does it.
Totally agree. I think my Gp would have been much happier to diagnose me with “hysteria” than increase my dose from 50mcg to 75mcg! He said “I’ll allow a small increase, but this may not be the answer. It may be something else that’s the problem…” I know what he was getting at - that infamous “all in your head” syndrome.
Totally agree. I think my Gp would have been much happier to diagnose me with “hysteria” Strange how that 'complaint' was majorly diagnosed in women, no? It may have been over 100 years ago, but medicine for we women hasn't moved on very much when we're still most often arranged into stirrups to give birth, have our breasts squeezed painfully to check for breast cancer and seem uniquely disposed to somatoform disorder. On a roll, now. Rapunzelloveschocolate, too x
I think most of those women probably ended up in the asylum because they couldn’t get a proper diagnosis and help/treatment they needed didn’t they. I also think the way cervical tests are done in the gp surgery is horrendous. Last time I went I had to contort myself to try to lift/tilt myself into position on the couch so the nurse could see. Impossible. The couch was right next to the wall so I had one leg against the wall and one hanging over the edge of the couch, tensing myself to hold the position. She tried to do the examination and the pain was off the scale. She referred me to the colposcopy clinic at the hospital who have a proper very comfortable examination chair and different equipment. The specialist nurses were brilliant - put me at ease, made me comfortable, did the test in about ten seconds. I never felt a thing. Didn’t even know she’d done it. All of those specialist facilities should be either made available at every gp surgery/provided in a dedicated clinic, then perhaps more women would turn up when invited to go for a test!
All of those specialist facilities should be either made available at every gp surgery/provided in a dedicated clinic, then perhaps more women would turn up when invited to go for a test!
Yes, why do they do that with our breasts???? Some technicians are fine and cause no pain but at my last check the woman tightened until it was jolly uncomfortable but bearable, went and twiddled some knobs then came back and suddenly without warning sharply tightened both grips on my breasts. It was so painful I just dropped my head and left as soon as released without even saying anything. It felt truly masochistic and I haven't had the courage to go back again. Apparently there's another way of checking the breasts that costs around £200 and involves travelling to London.
You've already been pointed to the graph in the internet archive by SlowDragon. But the table I've given is helpful too. It states that for 95% of the healthy females under 40 the TSH lies between 0.37 and 3.30 with a median level of 1.30.
I should point out that the language I've used in that sentence above would make a statistician shriek, but it's close enough for a doctor.
The paper that the table came from used to be freely available - and was for years. But it has ended up behind a paywall recently so the link provided in that thread is out of date. I haven't managed to find a freely available link anywhere.
Thank you, this is super helpful to read and use as a reference. Interestingly I also had my doctor try and suggest that maybe my symptoms are due to the PTSD I suffered as a child and in fact not my thyroid, I think they feel they’re humouring me by giving me some medication to shut me up. I’m pretty sure chromic stress and things like PTSD probably contribute to things like thyroid conditions developing as stress has such a negative effect on the body. The stress of telling my GP the same things over and over certainly puts a strain on me!
Females tend to present with somatic symptom disorder more frequently than males, with an estimated F:M ratio of 10:1. [6] This may be due to a greater willingness to report somatic symptoms in the female population.
That’s pretty much what a lot of doctors wanted to palm me off with, but when I received therapy and they confirmed I had neither anxiety or depression, and that I’m not actually constantly worried about my heath or fearing I have a serious illness it didn’t really fit with their narrative.
Are you sure? Since somatic means 'relating to the body', the quote sounds as if it means women are more willing to go to the doctor than men. I hope I haven't upset you by making this comment, I just think we need to keep a balanced view.
Somatic System Disorder is used as a diagnosis for physical symptoms that doctors can't find a cause for. If doctors could find a physical cause they would use the name of that cause. But when they can't find a cause they use SSD as the diagnosis. It is a psychiatric diagnosis. And once anyone has a diagnosis of a psychiatric disorder of any kind (e.g anxiety, depression, SSD and many others) they will find it very hard to get taken seriously about anything to do with their health.
In the link I gave above, in the International section :
A study in Belgium reported that somatization syndrome is the third highest psychiatric disorder, with a prevalence rate of 8.9%. The first and second most common psychiatric disorders were depression and anxiety disorders. [9]
Somatic symptom disorders contribute a significant economic burden to the costs of brain disorders. A European survey estimated the cost of somatic symptom disorders across Europe to be 22 billion Euro/year (approximately $30 billion US dollars per year). This makes the cost of somatic symptom disorders in the range of that for multiple sclerosis, Parkinson disease, or traumatic brain injury. [9]
Perhaps I need to read the whole article to understand?
This doesn't look to me like a criticism of the female population and I wonder if there's some confusion here because of a difference between American and English? Having looked up Somatic symptom disorder the description is "diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning. The individual has excessive thoughts, feelings and behaviours relating to the physical symptoms."
The word idiopathic is used in the UK for "relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown"
If I had the former I would wish to be diagnosed and treated, I think mental disorders can be just as distressing for the sufferer as physical ones.
Perhaps you know better and it's a long time since I worked in psychiatry but in my day a person presenting with SSD would not have been considered hysterical, the word hysterical was used to describe those patients who rang up frequently saying they were going to commit suicide when in reality they meant life was getting too much - completely understandable. It was often private patients with time and money to telephone when they felt they couldn't cope. The language though caused difficulty, it is very hard when on the telephone to be absolutely certain that the person on the other end is just overwrought and exaggerating rather than desperate and at the end of their tether.
In any case, thank you for your post, it is an interesting topic.
I think mental disorders can be just as distressing for the sufferer as physical ones
That might well be true. But in the UK the medical profession uses psychiatric diagnoses (e.g. anxiety, depression, SSD, fibromyalgia, Chronic Fatigue Syndrome are common ones) as dustbin diagnoses a lot, particularly for women, even though the last two I've mentioned aren't psychiatric in origin (in my opinion. I haven't been diagnosed with either of them), and SSD is probably not psychiatric either, the symptoms probably haven't been investigated enough.
Doctors seem to feel that having given a patient a psychiatric diagnosis their job is done and they can dismiss the patient. Once diagnosed as having psychiatric problems no invisible symptoms are assumed to be physical - they are just the patient "somatising". This dismissal mostly happens to women. I was first diagnosed with something psychiatric/somatic in my late teens, and I'm not even sure what it was - nobody ever told me. I just noticed that getting treatment for anything at all became damn near impossible for a very long time and is still difficult. I'm now in my 60s and I don't bother to go and see doctors for anything invisible unless I think the problem is potentially life-threatening. Doctors still fob me off if they think they will get away with it even though I have some serious physical issues in my records.
Incidentally, I have been diagnosed with anxiety and depression several times throughout life and anti-depressants never did a thing except flatten my emotions. I finally got rid of these problems when I treated myself for iron deficiency for long enough to actually fix the problem. In the UK it is quite common to only treat nutrient deficiencies for 2 - 3 months. I absorb iron very poorly and it took me two years to get my ferritin to mid-range and a further five years at a lower dose before my serum iron rose to an acceptable level.
The word hysterical isn't used in the UK - it is just implied.
Hello again humanbean, thanks for your reply, I didn't know you had anxiety and depression that responded to iron though I've read many of your posts on this, I'm so glad you found a way to heal yourself and that you share that knowledge.
A TSH between 1-2 is preferable for many to achieve that your T4 and T3 levels need to be optimal for you and in range. if possible a good way to dose T4 exactly is with liquid levothyroxine. That way you don’t have to jump up or down with 25mcg dose increases or decreases. But liquid levothyroxine is expensive and that may not pass your medication managers budget. I use liquid and split my dose twice a day. I take 34mcg then a second dose of 34mcg a few hours later = 68mcg a day. There’s no tablet form that could add up to that dose. I have an absorption issue which enabled me to have liquid form. Liquid absorbs much better too. Taking levothyroxine at bedtime can also increase absorption. I also take T3 medication which I split my dose too. My TSH and T4 and T3 levels are always in range, just. Importantly I feel symptom free as long as I stick to my regimen and same brands.
My mother was a nurse/fever nurse/midwife and health visitor through the years. She worked from a surgery and went to see the GP there after finding a lump in her breast. He said it was nothing and she believed him. She died of breast cancer two years later.
He died two weeks later of drowning. I like to think my mother had a hand in it!
I’m so sorry to hear that. It’s terrible indeed. So many of us share similar stories. My poor mum suffered from bi polar disorder, so she was never properly treated or looked after, if I’d had the strength I should have claimed medical negligence at the time.
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