if a gp reduces levo surely they have good reason and your thyroid working better now. or am I missing something.
if a gp reduces levo surely they have good reas... - Thyroid UK
If you have an underactive thyroid, taking Levo doesn't make your thyroid work better, it's replacing the thyroid hormone that your own thyroid can no longer produce.
Would you like to share your thyroid story with us?
Are you diagnosed hypothyroid and on Levo?
Has your doctor reduced your dose?
bootsy As I found to my cost, even endo consultants are not always well versed in thyroid basics even though they are well meaning. For years I was on too low a dose of levo as shown by me still being very ill and tsh at the top of range at 4.5 and with ft4 being 36% through range. Only by finding this site and learning did I realise that tsh should according to doctors guidelines be under 2 and ft4 at least 50%.
The folks who respond well to levo and are the basic text-book cases doctors understand, are not on this site.
On here you find the folks who are not straightforward, the ones who doctors dont understand and the ones who have received poor treatment.
I lost my faith in doctors long ago. I only got well by being proactive, learning about thyroid and engaging directly with doctors to put forward the case for the treatment I needed otherwise I'd still be housebound.
Yea but Lalatoot,
Turns out I was a straight forward case and they still stuffed it up and made me ill 🥴 at my worst I was suicidal and yet I am normally such a positive person. 😊
I’m hanging around as I’m sure the advice given here and the relatively quick action I took (thanks to the forum advice) saved me from becoming a complicated case. I’m convinced timely diagnosis and treatment is a key element to a successful outcome.
I am enraged for my fellow forum members and for the shoddy treatment they have received. 🤬😱😥
I owe my life to this forum.
welcome to the forum
As soon as we start on replacement thyroid hormones the feed back mechanism means TSH levels drop dramatically
Levothyroxine doesn’t “top up “ failing thyroid. It replaces it.
TSH is the message from pituitary asking thyroid to make thyroid hormones
TSH is not a thyroid hormone
Most important results are always Ft3 (active hormone) followed by Ft4 (levothyroxine)
Unfortunately in U.K. Ft3 is rarely tested and increasingly common that Ft4 isn’t tested either
Just testing and dosing by TSH will frequently leave patients woefully under medicated, with very poor or zero quality of life
It’s important to ALWAYS Test thyroid levels early morning and last dose levothyroxine 24 hours before test
About 90% of primary hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies
With Hashimoto’s patients often need TSH low or suppressed to turn their own irratic thyroid output off completely to try to reduce rapid and debilitating swings in thyroid levels
Extremely important to regularly retest vitamin D, folate, ferritin and B12
Low vitamin levels tend to lower TSH
Being under medicated for thyroid on inadequate dose levothyroxine will result in low vitamin levels
Please add your most recent thyroid and vitamin results and ranges if you have them
I never realised having suppressed TSH was beneficial or necessary for Hashimoto's patients.
For many Hashimoto’s patients it’s the only way they find stable thyroid levels is to have very low TSH, otherwise levels are hopping around all over the place
SlowDragon, your explanation of the relationship between TSH levels and Hashimoto’s has shed some light on why I’m feeling like I do at the moment. The erratic thyroid out put being responsible for the remaining symptoms despite the gp’s blood review as “normal”. So frustrating that they review our results so narrowly rather than considering the whole. It’s no surprise that it can take an age to “optimise”.
Once upon a time I might have thought the same.
Alas, it’s seldom as simple as all that.
no, they just look at TSH and try to get it as high as possible until you refuse because you feel so awful
I have friends and relatives whose GPs up and down their doses regularly, they feel dreadful have terrible teeth and one has heart concerns now. Exhausted, pale… me the newbie is opening their eyes, they’re requesting their blood test results. GPs only treat one symptom at a time. This wonderful forum helps us get on top of all of it in a joined up process. As my clever daughter pointed out, General Practitioners are exactly that, what we are becoming is experienced in a single condition with a huge similarly affected community to learn from. 🦋💚🦋
GP's are Jack of all trades, masters of none. Especially not thyroid, or much else for that matter.
Indeed. The shortage of GPs is making things worse. The blood test is everything for them. They often miss downward or upward trends in results just scanning for the abnormal message which guides their next move. This means conditions that could be addressed at an early stage are often missed and become quite serious before treatment is given. (Personal experience) This is why we need our results. The Dr may say your results are 'normal' but you need to check 'are they normal for me?' After all, there's a reason that most tests have a range provided rather than an absolute figure. And with thyroid if the blood test result reads 'normal', Drs often ignore symptoms which are hugely important in this condition and should direct treatment decisions.
Its funny isnt it, you dont have to "prove" you're depressed, in pain, achey or fatigued with many other conditions, there aren't blood tests for it. Doctors just accept you're telling the truth. Yet they ignore the symptoms of thyroid disorder and seem to focus exclusively on blood tests. The holy grail of TSH. If your bloods are in range then any ongoing symptoms are a "you problem", not a them problem.
it’s why it’s so helpful to gather all results on to a spreadsheet so you can see results “over time” …..see if Ft4 is rising or dropping
See if thyroid antibodies start to reduce on gluten free diet or dairy free diet
See if vitamin levels are stable or limping along at bottom of the range
I think this sums things up rather well
I belief that too many adjustments by doctors/endocrinologists or insufficient doses may cause us to feel more awful and we cannot figure out why 'as we're prescribed a replacement' to take daily.
Rarely is Free T4 and Free T3 tested and the professionals seem to think that if they are 'in range' that we're on a sufficient dose.
I could not improve my health on T4 (levothyroxine) alone.
Sometimes we have to have 'trials' i.e. T4/T3, T3 only, NDTs (natural dessicated thyroid hormones) that restored health since 1892 and was the very first replacement that saved lives from 1892.
Unfortunately, in UK, (as far as I kow) those who are supposed to be knowledgeable removed NDTs from being prescribed and many people were upset as they were becoming symptomatic again.
One of the doctors phoned me to tell me:
Your TSH is too low, Your T4 is too low and T3 too high.
My response:- My TSH is low because I take T3 alone. T4 is low because I take none.
GP responded "but T3 converts to T4". 'No doctor it is T4 that should convert to T3!
Some of them are idiots and will reduce it by huge amount in one go totally ignoring the hard work of an endocrinologist to get numbers optimised (been there had that 75mcg reduction in one go I flatly refused and called the Endo secretary who said to be referred back to them to put a stop to it she dropping it like a hit potatoe as soon as I said They had advised I be referred back to them 🙄) It’s because they are TSH phobes and very ignorant not even following the woefully inadequate guidelines. It’s supposed to be a partnership with the doctor to optimise your health not a dictatorship where you kowtow to draconian reductions in dose from on high despite symptoms indicating this is not the correct action. All too common I’m afraid ☹️
Well I had an endocrinologist put me from 112mcg to 200 mcg in one go, it was about a month out of surgery. She did tell me it was against protocol but I had no clue about the ramifications. And then she had the upper hand to blame all my suffering on me still being hypothyroid, not her choices.
Just want to point out that endocrinologists can also make extreme decisions to get numbers optimized.
yeah I know you can In theory go straight onto a full replacement dose. I think it would have saved me a considerable amount of suffering. I got loads of heart pains so they would only up in 25mcg increments and I got a useless endos understudy initially who said he found me euthyroid when my TSH was above 80 - what an idiot I looked and felt terrible and had the numbers to prove it but he kept me on 25 for months 🙄 I think if my heart withstood huge jumps in TSH (undetectable to 110 in a week for example) when I was ill and it didn’t kill me, a full replacement dose wouldn’t have done so either but I shall never know. Two relatives that had thyroid cancer made very rapid recovery on Levothyroxine I suspect they were given a big dose straight away. But I never felt well on it whereas they did .
useless endos understudy initially who said he found me euthyroid when my TSH was above 80
That's probably one of the worst thyroid-related anecdotes/experiences I've ever heard on this forum. Did you ever manage to re-educate the nincompoop? Although I doubt you would have had the mental or physical energy to do it even if you wanted to with a TSH of 80+.
Luckily I never saw him again but he messed up an ultrasound appointment too. I saw the endocrinologist after that, who was pretty decent. He whapped up the Levothyroxine and did the ultrasound himself - no cancer cos there was no thyroid bar a tiny crispy thing. 2 close relatives have had NHL primary thyroid cancer it’s pretty rare and two others died of a different NH lymphoma so it’s got some sort of hereditary component, luckily it hasn’t got me, not yet anyway! It was stressful thinking I might have it and that divvie mucking it all up so it was three months before it was done. Good job I didn’t have it with a wait like that. I often wonder if your thyroid shrivelled up does that mean you can’t ever get cancer in it. It can’t have much of a blood supply so it’s probably a hostile environment for any cancer to develop in. I think it’s CVD that’ll do for me. It’s all a bonus anyway so I’ll happily accept my fate after cheating death with this milarky.
Jeeze hb I felt absolutely dire at TSH of 88 I kept working but can’t imagine I was very productive. I’d forget what people said to me in meetings and then I’d come out with really stupid comments. I just told them straight I had been really poorly and wasn’t fully recovered so might not be quite with it after it happened a couple of times. People were very sympathetic. My legs felt like lead trying to walk anywhere was a killer but I had to get to lots of meetings. I had to stand well away from the platform edge in the tube because I felt unsteady. I don’t think I should have been working in that state, this stupid just keep going attitude permeating everything and heavily pushed by the GP. If you’ve been that ill (I was lucky I didn’t die I was in a desperate state by the time I actually got a diagnosis I had hideous hallucinations and uncontrollable mood swings, didn’t sleep for days on end and suffered a miriad of other horrors) you need time to recouperate after all that, not make a complete fool of yourself trying to do work you’re not up to, or risk collapse because you’re physically enfeebled. I only really recovered two years later when I started on NDT. So many years lost to thyroid disorder. At least I’m not alone but it really shouldn’t be like this.
I often wonder if your thyroid shrivelled up does that mean you can’t ever get cancer in it.
I've no idea, but it's an interesting question that had never occurred to me before.
I felt absolutely dire at TSH of 88
I was going to say "I can imagine" but really I don't think I can. How long did it all go on for?
9 months to be optimised but T3 never was optimised TSH 0.2 -0.5 I presume t4 was top end of the range they wanted it in top 1/3 but t3 was rubbish. I was two years feeling like pants on Levo it got so bad I wanted to top myself but I joined here and found out about NDT and decided I had nothing to lose by trying it. It was cheap and easy to get back then. I feel my true recovery started with the first 1/4 grain dose of NDT although to be fair without Levothyroxine I would not have survived at all. I would liken the zenith to complete chaos both mental and physical, it was such an effort to do anything , reflection was impossible it was just going from moment to moment as best I could, trying to deal with the next horrible symptom. Talking of reflection, if I looked into a mirror I saw a skull looking back - terrifying. I felt like I didn’t deserve to live I was just a thing or something reptilian - perhaps the brain does revert to something like that in pure survival mode. I did get short bouts of hyper where I could suddenly run 10 miles with no effort at all but I felt crazy it was like a frenzy, then I’d be near comatose again. I was freezing cold all the time and my shins itched like hell & I’d scratch until the bled. I thought people were following me and even wearing disguises to fool me . I’d see three men on the tube then think they were following me. I might get off and walk somewhere and see three different men but think they were the same ones in disguise 🤣🤣🤣 even so part of me still knew it was ridiculous but part of me really believed it. Pretty disturbing in its own right. I also became so hungry I’d eat three massive meals one after another yet it was as if I had eaten nothing and I was still utterly famished. Nothing satiated me.
It was also very interesting to experience what happens when thyroid disorder goes completely out of control and how far reaching and bizarre the effects are. For a long time after I used to think I was nothing more than a bunch of hormones - they are very powerful things.
I should do a post about that cancer conundrum to see if anyone knows the answer
How did you choose to go day one to NDT? Did you go straight to 1/4 of a grain only - NDT by itself - on the first day?
I used this guide, which is an interesting read in itself:
But I keep taking Levothyroxine reducing it by 25mcg for each 1/4 grain increase in NDT just in case and so I could go back to Levothyroxine easily if it didnt help. Even a 1/4 grain had miraculous effects so I never looked back and slowly swapped over from levo to NDT . Best thing I ever did.
That experience sounds terrifying. It's no wonder in the days when there was no treatment that people ended up in asylums. It's absolutely appalling that you were ever allowed to get to that state. It simply should never happen, and yet for healthcare professionals to be okay with this, and so blasé about patients in your condition is jaw-dropping.
yes I feel for all those who went before us when there was no treatment - it would be a very horrible way to die the cold was indescribable like being in the artic I remember thinking I’d had it I was so cold I just prayed to die and be put out of my misery and hoping the whippets would have the good sense to to eat me if they didn’t get rescued immediately - desperate eh? I was rather surprised to wake up the next day just a tiny bit warmer I suppose I have Levothyroxine (I took my first 25mcg dose that day) and those two little hounds to thank for that. Shows just how tough a human being can be
I have been surprised how different doctors within the same practice have very different ideas on how to approach health problems. Even hypothyroidism. Some doctors will listen to you, others simply won't entertain anything except their own views. Everytime you have a health problem might be useful to chat with a different doctor to get a feel of ones which are flexible and ones who are not.
I totally agree with that. I have experienced it several times that doctors have had completely opposite opinions on things, and each would get quite upset if you, as a patient, voice the opinion of the other doc without telling them that it is not your opinion. If you say it came from one of their colleagues, they are a bit more subdued. Example: I broke my wrist. One doc said I would get arthritis in it. One said each patient is different, so there is no definite prediction whether or not I would get arthritis. And the third said that I might get pain but definitely not arthritis. I don't believe there could be a fourth option. They covered it all. In the end we have to come up with our own opinion and see whether it is right or wrong.
It is crazy. I used to go to this gynaecology clinic that rotated doctors every six weeks, so on an every three months appointment there was never the same doctor.
One would tell me if I did not have an immediate hysterectomy I was most definitely risking my wellbeing (pretty well life, that serious of a conversation). The next would tell me just leave it alone wait and see, let's not treat what is stable for now.
It was that extreme. Just crazy.
The fear mongers are the worst. They want you to do as they say immediately (preferably without giving it a second thought), when most things can wait for at least a couple of days; emergencies being the only exception.
I spoke to a different GP for every dose increase 50 to 150 that makes 5 GPs. I factually brow beat the one who told me I was ‘normal’ on 75 µg of levothyroxine. NOPE! I was symptomatic, but thankfully, at that stage, I was also far better informed than the GP I was speaking to, so she rolled over after 10 minutes of ‘discussion’. The others that came after must have seen a note against my name because they gave me what I wanted. I had a review date on my prescription of September 21 which I ignored and it has been revised to September 23. I think they are leaving me well alone now. A case of ‘Don’t call me, I’ll call you!’ with regards my local surgery. Sad state of affairs to admit BUT the less I see them, the better I feel.
The most I might have to do if I lose a bit of weight is eventually tweak my dose down, but that doesn’t require me to get a blood test with the NHS or to speak to a doctor, I’ll sort it myself. Bearing in mind my primary indicator will be symptoms the blood test will be purely an aide.
The primary purpose of the GP is to act as a gatekeeper of treatment on the NHS. Their job is to filter out the worse cases at any given time. Levels of referrals and treatment can vary according to availability of treatment. At the same time they filter out the least worst cases to be refused treatment. That applies to nearly all conditions.
They act according to NICE guidelines. If you look on the NICE website it advises not treating people until their TSH reaches 10 even though they admit that 5+ is abnormal. They say this is largely on cost grounds.
I had TSH readings of 6 to 7 for 20 years. Recently I developed a goitre and a whole host of other symptoms: high b/p, high cholesterol, tiredness, excessive weight gain, serious mental issues like memory loss/inability to concentrate or focus/depression. My b/p has been low all my life (100/60 approx) but recently has been racing to dangerous levels. My cholesterol has been low all my life and I was always slim but putting on weight gradually. When I started on thyroxine, I started losing it.
They are still telling me that dangerously high b/p is nothing because they don't want to spend any money. It can be reduced largely by exercise (for me, anyway) but even in the face of that, they would not give me the thyroxine.
It is a really disgraceful state of affairs. I would still not get the thyroxine if I had not seen an endocrinologist privately.
The thyroid seems to be quite complicated, requiring constant blood tests, which they don't want to fund. Like a lot of people on here, I pay for my own.
I'm sure they have a good reason for everything they do. That does not mean that their reason is right. It might not even be backed by science. It is just their own reason (or that of their governing body). But I know where you are coming from, bootsyboot. I, myself, would have been a staunch proponent of "doctors know what they are doing" (and no doubt there are those who do...lucky if you find one) about 10 years ago. I'm now quite embarrassed about that because I feel that I was terribly wrong. Live and learn.
I think any GP over 40 is completely burnt out by demand, rules, rule changes, organisational change, workload,, paperwork, CPD, threat of litigation, and counting their pension money… and totally disappointed / disenfranchised with their chosen vocation… and after all that training at the tax payers expense. I blame government…
Agreed. Most doctors did not become doctors to become the doctors they become. You could not pay me enough to become a doctor. And in North America they also have to pay off horrendous amounts of student dept. Both patients AND doctors are the victims of the system. I blame capitalism.
No - when I developed a goitre, put on weight and my TSH went from 6 to 9 so the last couple of years and have had readings as high as 175/85 but it used to be 100/60. Can't get it down now. Same goes for the cholesterol - it was always around 3 but has gone up to around 7. I know GPs have a budget but I wish they would stop saying it is nothing serious when it clearly is but they do not want to fund it.
when both readings are high, in me, they come down with a dose increase
That is a relief to know. When you say both readings, are you referring to both (systolic and diastolic) b/p readings or b/p and cholesterol.
I have just gone on to 100 levothyroxine and it seems to have made a difference to my mental state and energy. Hopefully, the b/p will drop. I had other symptoms for a long time as well - repeat thrush and dry brittle falling hair. I could go on as I keep remembering them. 25 levo did nothing but when I went on to 50 I lost a stone. Going on to 75 did not seem to produce any change and I was on it for about three months.
I meant systolic and diastolic but if your thyroid hormones are too low then an increase is likely to reduce cholesterol too
Really pleased to hear that. My TSH was 6 to 7 for 20 years then went up to 9. My T4 was near the top of the range 20 years ago but over the last 20 years has been right at the bottom. T3 not tested. They refused treatment on the grounds that T4 was within their (Mickey Mouse) range and also no antibodies. I was tested a few times for both. In spite of that, I developed a goitre. Many thanks, I feel an awful lot more alert and normal now that Levo has been increased to 100. I have actually been dealing with a lot of issues that I could not mentally cope with for months on end.
Your doctors are a disgrace in not prescribing options that may restore your health.
If we hypo patients are not improving the doctors should be more knowledgeable than they are. I doubt they cover 'why thyroid hormones are essential' whilst training.
I find it strange that before levothyroxine and blood tests were 'introduced' we recovered our health on NDTs (natural dessicated thyroid hormones) and they contained all of the hormones a healthy thyroid gland would do. and the reason is that all doctors (in that era) were aware of symptoms and patient diagnosed and given a trial of NDTs.
The worst is that people who were well on NDTs had it removed completely 'by the powers that be' and caused immense panic as symptoms of patients were returning.
If a person who presents to the GP with a TSH of 100 who later on informs person by phone that they have 'no problems and test is fine' proves to me that the majority of GPs are uneducated about how best to diagnose/restore patients' health.
I cried because I was very unwell. Thankfully I found Thyroiduk and became a member and have recovered my health and am symptom-free and feel well. I realise that GPs seem to be very unknowledgeable about clinical symptoms and what diagnosis to reveal to patient.
I have an annual struggle with my surgery who insist my TSH is too low, despite my T4 being within range and me having no symptoms of being hyperthyroid. They still want me to reduce my dose again and I'm pretty sure I'll be noted as being 'non-compliant'.
they should just repeat the test to make sure it isn’t test error - have to wait three months first of course - amazingly confusing how disparate test results can be with no dose change
I've had very low TSH for many years, since I took T3 for a time (after being left on too low a dose of thyroxine for far too long). My T4 is fine but it annoys me that their concern is so much on just the TSH.
it really shows that they have no real understanding of the condition. And do not keep abreast of latest developments in research
Unfortunately they have the power though so, despite arguing my corner, I couldn't convince them to leave me be.
It’s darn difficult, but technically you can refuse to accept the reduction. I suppose you just say no demand the unaltered prescription grab it and walk out but I bet some would still try it on. I would then Send a letter to that GP saying I will not agree to a dose reduction it is being done against my will abd not in partnership as outlined by NHS (quote document ref see below) and give three short reasons why it is not appropriate and demand the original dose is adhered to they’d be forced into a corner and any reply could then be challenged . It’s awful but often advice is given to take a man with you as this tends to have the desired effect - desperate eh? I was lucky to have a supportive Endo to use against her. There are some NHS guidelines that do state that treatment is a partnership between GP and patient. Doubt waving these at them would make one iota of difference but it might be worth a try.
Is there a more reasonable Gp you could see at the practice? Or if you can stash away some extra just stay on what suits. As long as freeT3 isn’t over range there’s no problem. It’s all so exasperating whilst they get away with keeping us poorly when there’s no excuse to do. Doctor or sadist….sigh
I gave up on them and self medicate with NDT and feel a darn sight better for it it annoys me because it is not difficult at all to get the right NDT dose, or at least it hasn’t been in my case and totally without a doctor. It completely resolved the awful symptoms I was still experiencing on T4 monotherapy. The surgery leave me alone about it I have told them and are good on other health matters I have had to consult them about but all the GP s there have been really good. Pretty lucky there.
We reached, what the Physician Associate called, "a compromise" despite us both agreeing that we didn't think my next blood test result in 2 months would be much different. She probably thinks I'm not going to reduce my dose very slightly. I just want to have an input and keep some control. All the doctors in the Practice seem the same but I may have to go see someone else to check out their ideas. I've even started looking for an endo who may help but I know they are rare unfortunately.
I think the main problem is that doctors treat numbers not patients. And for them it is the easiest, fastest and probably safest way (think malpractice suit). To them it's "evidence-based medicine" because it is based on standardized guidelines that have been handed down to them. I would bet that the majority of them don't even know what those numbers are based on and where they come from. They just do what the guidelines say, period. They protect themselves and the patient is secondary.
It’s a pity they don’t use sensible numbers like the two thyroid hormones and TSH and the specific parts of the range where you feel well. They ought to be keeping up to date with current research it’s a common disorder you think they’d want to know how better to treat it. Just using TSH is is totally unacceptable. The Toft guidance is as good as it gets for t4 monotherapy so why aren’t they adhering to it? And we are not just a load of numbers we are real people, living real lives in the real world!
Exactly! I'd have thought, also, that they'd appreciate their patients educating themselves too but they don't seem to. I told the Physician Associate and the doctor I spoke to that I have no symptoms of being Hyper but the PA kept going on about getting AF. I reduced my dose due to that years ago myself.
My T4 and T3 are in range. I should have asked the PA what she will do if my TSH still refuses to come down on the reduced dose - take me off it completely?!
An educated patient is the worst nightmare for most doctors, from my experience anyway. They need to be crushed. I used to get a newsletter by a surgeon who talked about this and that from his practice. One newsletter was about a patient to whom he had suggested quite invasive surgery. The patient asked whether that was really necessary (I would not DARE to phrase a question in this way ) and he wrote in the newsletter that he was grateful for that question because he had been on "autopilot" and the patient shook him into awareness. He did, indeed, find a much less invasive way to help this patient. Those are the doctors we need. They don't rip the patient's head off because they threaten their "authority". They appreciate the input and use their brains to come to the solution that is best for the patient. Unfortunately, they are exceedingly rare (for whatever reason).