Just had my telephone consult with the gp re tsh 1.96 and increased symptoms again. He basically said that in his experience when the tsh was within range there weren’t any issues and he had never come across that before with patients. He said he understood what i was saying but that we should look into other causes of fatigue (another treadmill of tests and non-diagnoses) even though i spoke about increased joint pains again and back pain. He said he’ll ask the receptionist to book me another appointment for a second opinion regarding a small increase in dose. Right. Great. Thanks. More stress. He went through his checklist of hair loss, dry skin, constipation, fatigue and because i didn’t say i was pooping bricks this time and that the dry skin was all over my body…computer says no. Fuming. Am I going to have to remortgage my house to see a private thyroid gp!!? This journey is killing me off slowly! Oh…and he kept on sighing all the way through the call!
Just read the clinical notes on nhs app - thankfully he’s kept it brief and professional and asked for a second opinion because i think symptoms are thyroid related and want to try a small increase.
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Thanks SD. I weigh 89.5kg …my weight was starting to go down slowly and shifted from 90.7 to 87.8 then ground to a halt and started creaking upwards again, but because it’s not a massive gain it doesn’t count apparently, same as the dry skin issue - if it’s not all over the body it’s not hypo. Is ih getting hypo patients mixed up with crocodiles!
here's a useful scientific study of crocodile poop... just so you know what your aiming for : researchgate.net/figure/Fre... Fresh-feces-from-five-different-species-of-crocodiles-A-B-Slender-snouted-crocodile
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.
Some people need a bit less than guidelines, some a bit more
Yes, makes me wonder too, Falling. Every time I spoke - he sighed. He said well your tsh is the same as it was in Sept last year 1.96. Even though I’d already explained that I had a return of symptoms, got a tsh test = 1.96 and the gp agreed a small increase! He then got shirty and wanted to lecture me on the tsh. Nahhhh, see ya…
So you've got to be bald as a coot, comatose, skin like the Sahara desert and bowels backed up to last month to qualify as having symptoms? Gotcha 😄. What a plonker.
Absolutely! They don’t like it at all do they. They want us to shut up and do as we’re told or send us off on a wild goose chase of tests for things that aren’t a problem so they can call us mad and evil and hysterical and cart us off to the dungeon.
No, they think it makes us dangerous and stupid. They don't believe any of us are up to doing actual research and learning about our own bodies and the conditions affecting them. In part that's because so many don't and think only what the doctor tells them is right regardless of the outcome.
Hehe!! No, Don’t feel guilty at all, Stills! It cheered me up. That’s the beauty of this group I think…talking things through and seeing the funny side of it all.
Do you not have a stash of Levo hidden away to give yourself the increase you need. I'm sure many of us have! Then you can begin to feel well despite the stupidity of the GP!
Thanks, Lottie plum. I’ve been thinking about that. I’m trying not to do it if i can help it because I know I’ll run into problems later on.I’ve just found out i’ve got a second opinion gp calling me next week so i’ll hold on until then… if i can!!
You must do what you believe is right for you. See how you get on next week. It's only after a private Endo appt+bloods revealing I'm a poor converter that I got T3 script that has given me my life back after GPs screwed it up! I'd go without holidays to pay for my private Endo+T3 as made so much difference - plus GP no longer involved re thyroid - hurray!
Its all total bull crap. As a fellow Fibro I feel for you. I was only saying to my hubby yesterday that apart from acute episodes of ill health like a chest infection, broken leg or appendictis no doctor I've ever seen outside of that has ever made me well.
Everything gets blamed on Fibro or depression. As soon as they see that its game over and they simply dont bother looking at anything else. They begrudge increasing thyroid meds but cant wait to hand out the antidepressants like smarties.
That is sooo true! That is why i went so long undiagnosed because i couldn’t face going back to the gp to be told it was all due to fms or cfs. That’s why i ended up very ill and decided to test myself first for thyroid before i went to the gp so I’d have some evidence of what was wrong. I just don’t get why they begrudge a small increase in dose!! What is that all about…I just don’t understand…
Well apparently there are financial advantages for the practice for each patient on AD's, quite a nice lucrative side line, ditto statins, diabetes, high blood pressure. Sadly thyroid meds are worth diddly squat.
No financial incentive, plus most GP's dont understand hormones in the first place. When you know that GP surgeries are run for the benefit of the partners, not the wellbeing of patients, it all becomes very uncomfortably clear why they make the decisions that they do.
now I have been saying this to any sod who will listen but mostly the response is very loud eye rolling and sighing, they have tried unsuccessfully to start me on metformin, statins and antihypertensives , I refuse tell them lets start by optimal treatment of my hypothyroidism and not waste NHS funds, but of course they don't want that they want their cut of the pie , do you have any links, refs that I can use to prove I am not a complete crackpot
Yes Quality of Outcomes Framework bma.org.uk/advice-and-suppo.... It changes every so often and points allocated go up and down but you'll see the gist.
There's been a NHS trend to stop people getting jabs for pernicious anemia or B12 deficiency and switch them over to tablets, madness as PA means you can't absorb tablets, but when you see that PA gets no funding points it becomes crystal clear what's going on.
well I was on a decent regime with my gp that worked well, she left and within days another gp rang me “ you aren’t on the normal regime , you don’t need to this ,you don’t need to do that, it’s not how we do things here” got so unwell,took 6 months for anyone to believe me, on my last legs and fortunately saw a gp registrar doing some time at the practice, took one look at me, fast tracked tests, and within 3 months, I’d seen a thyroid surgeon, more tests and had a total thyroidectomy due to U3 nodules, he probably saved my life. Still under the post op team, dreading being discharged back to Gp. It has made me stronger and I’m determined now to stand up for myself and not be fobbed off with “ it’s not what we do here .
I was thinking just the same a couple of days ago. The GP Partner that I usually get stuck with (I try to avoid her, but she cannot stop herself meddling) is fine for athletes foot or ear wax (they finally re-introduced wax removal last year, only to remove the service again a few months later) or ... struggling to think what else, but anything that requires any investigative or deductive skills is completely outside her skills or interests. As a GP Partner she probably makes in the region of £140,000 per year, but she is truly awful. Like yours, she dishes out antidepressants at the drop of a hat, but getting a reliable supply of levothyroxine or hydrocortisone tablets (which I need to keep me alive, not just well) is a nightmare. One of my neighbours lost her sister last year and blames the same doctor for the terrible state she was in prior to death and for the death as well. There was an inquest a couple of months back - I haven't heard the outcome yet, but I imagine the system will cover up any problems
The same practice used to have excellent GPs, but the best ones either retired or changed to become locums doing so few hours that it's impossible to see them.
they all just keep saying, but according to the range your tsh is fine, your tsh is in range, your tsh is normal, your tsh is optimal…then when you start to explain and expand what you’re saying about symptoms and bloods they throw their toys out of the pram!
Its weird, depression and anxiety are diagnosed from 'drumroll please' symptoms, as are CFS and Fibro. In fact there are quite a few conditions where there are no definitive tests, Parkinsons being another.
Yet people get these diagnosed daily. So why is it that symptoms are completely discounted for Hypo? Surely blood tests are just a guide, not gospel. Yet another example of medical hypocricy.
It’s so easy to despair in these situations - and absolutely rightly so as it shouldn’t be this hard.
I had a similar experience early on in my thyroid journey, and I found it’s not issue trying another GP within the practice to increase my dose (even my TSH was below range).
I imagine the GP you had knows that they are not comfortable increasing dose, but others will be.
Thank you HSD for sharing that - good to know they still gave an increase when the tsh was low xx. Was the other gp ok with you? This one I had to day was borderline nasty and i hope the next one will be nicer! Once the symptoms come back i feel kind of overly-emotional…everything feels like a hard slog. I need to try to stay calm. xx
The GP that refused the increase? I wouldn’t say OK. No. They were quite firm and of course it had an impact on how I feel. In fact, accessing any health care is very traumatic for me to do so.
It’s OK not to be the calm. Especially for someone who is managing a hormone dysfunction! But, rather than shouting into the ether with you over how crap they all are, I hope you can relax a little knowing it’s still perfectly possible to get that increase your after.
For reference, not one but two GPs agreed to a trial of increased dose while my TSH was under range.
Don’t give up hope. It’s all part of the learning journey, and over time, with knowledge, you’ll become better at advocating for yourself too.
Were the other gps who agreed an increase ok? Thank you for your reply, yes, maybe the next gp will be fine and agree to an increase and I need to remember that. I’m really no good at advocating for myself at all. I was brought up in a very abusive and violent home and I think that has affected my ability to speak up and stand up for myself.
I would suggest getting off here for a moment as it’s only adding to you catastrophizing and spiralling. Take a moment to be kind to yourself before getting a post it (to keep things concise) with points of reference to aid you in your next appointment.
A post it is a fantastic idea! Usually I surround myself with piles of stuff and then worry about what I might forget to say before the appointment has even begun. Thanks for the link will take a look. I’m going to eat chocolate and watch some tv.
I hear you, I was badly bullied as a child throughout my school career, it made me very scared of confrontation. However as I've got older I've become far less of a doormat and will fiercely but politely advocate for myself. Health is so important and we only get one shot at life. We deserve to spend it being as well as we can be, not at the mercy of our crumbling NHS.
I think I did frighten him. In the aftermath, I actually think my message to the practice may have been a bit verbose too.I hope they don’t dig their heels in and get awkward to teach me a lesson because I mentioned my tsh levels.
Is it a doctor or a donkey on the end of the line!
Or one and the same!
The donkey isn't even considering thyroid hormones
"In his experience"....bah humbug! No evidence of that experience!
It beggars belief that after years of education and expense this is the best that med schools are turning out to help thyroid patients.
We end up having to do the diagnosis ourselves...and have to fight for correct medication or just get on with it and self medicate.
If they fail their mistakes are buried. I wasn't far off being a mistake....until I found the real experts here.
My rant isn't helping you....I see red most days when I read people's experience. They have so much power that hoping for change is like whistling in the wind.
But, in your shoes I would record all these negative issues and make a complaint to the Practice Manager.
This GP shouldn't need a second opinion that, in it's self, is an admission of incompetence and lack of basic knowledge.....he's out of his depth
You shouldn't need to see an endo.....this is a GP's job.
But you might have to go down that road.
Why should patients have to pay for consultations when the country is training NHS medics to do the job?
I’d rather talk to a donkey 🤣 All this waiting…feel ill…ask for a blood test….book a blood test….get the blood test…wait for the results to come back…results labelled “normal”…write to the practice…wait for a reply…wait for a telephone call…rinse…repeat. It all just drags it on and on. I could rant for England! If there was an olympic event for ranting I’d be in with a chance at getting gold!
rather talk to a donkey ... actually, now you come to mention it .... so would i ... can we ask (insert whoever the health minister is this month) if all NHS thyroid patients can be triaged to a donkey sanctuary, with clinical oversight by a vet ... it would help the NHS no end with their shortage of GP appointments , we'd all be much happier , and probably better managed.
I said the same thing today! My dog was poorly last week and had to be hospitalised for two days and the vets were amazing. She’s much better today thankfully and the vet rang today to see how she was.
Vets are so much better than GPs these days. They cover the same conditions, but manage to cover multiple species, not just one. They manage to cover animals that cannot explain what's going on and that might not appreciate injections etc. Ok, they aren't all as good as the vets near me, but I'd still say that they do a better job than NHS GPs.
When I was diagnosed with adrenal insufficiency and given the set of emergency syringes, needles and vials of liquid, who gave me an opportunity to practice doing an injection? Was it the GP, the endo or the endocrinology specialist nurse? No, none of those. It was my local vet, who gave me a syringe, needle, bag of saline and a teddy bear to practice on.
Just remember they are the donkeys.....you are the brains!
For good health every cell in the body must be flooded with T3 by way of a constant and adequate supply.
Your FT3 is consistently low and low FT3 causes many symptoms, ill health and in extremis....death!
But...getting that basic fact into the heads of these naysayers is likely to take until hell freezes over.....
they don't listen and if they do hear then they don't want to know because that knowledge proves they are wrong, and responsible for much misery....so the madness continues.
My case is complicated...I walked away once I'd heard what an endo had to say..... I knew I had to take control but, sadly not everyone who needs an answer can do this.
Patients deserve a level playing field....the proof is here
Unfair to donkeys, donkeys are patient, hard working and very cute. Doctors? Not so much 😆 I would say they do share a tendency to sheer bloody mindedness though, excusable in an animal, not in a human being who works in the ' caring' sector.
That's the road I'm on at the moment. Just seen private endo just to get increase to 75 mcg ( after over a year since being diagnosed , TSH was 5.0) My donkey, oops doctor said exactly same to me as Jojoloveschocolate 's . So frustrating, all the tests you get sent for, while they're trying to prove you've got something else! Fortunately Endo has written to my GP telling them to keep TSH under 2. At the moment, I feel like I m heading in the right direction, and feeling better.
He basically said that in his experience when the tsh was within range there weren’t any issues and he had never come across that before with patients.
Probably because he never listens to his patients! But, they all say that: never before, in all my career, have I come across a patient blah blah blah like you. And, yet, there are thousands of us on here with the same problems. I can only conclude that, as I said, they just don't listen to what their patients are telling them. Or that their patients are too imtimidated to tell them. Either way, it's bad.
There's no such thing. TSH is not a hormone that does much on its own, it follows the levels of the thyroid hormones - or that's what it's supposed to do. Trouble is, it doesn't always. It's the FT3 that needs to be optimal, and as optimal is different for everybody - it's a feeling, not a number - so will the TSH be different for everybody. However, the measurement cannot go below zero, and very often the TSH will be zero when the FT3 is optimal. Therefore, you cannot give an optimal number for the TSH.
I tried, nicely, to disagree with my endo, who wouldn't increase my T3 due to TSH being low in range, and the fact that I have researched this, but I then was given a lecture about how long she had studied, and that she knew better than everyone, including all the contributers to this forum!!!!! You know..... oh, you've read it somewhere.
Oh yes, I know that lecture. I think I've heard them all. And I always disagree/argue. And I always tell them no, you're not the expert, you don't live with this disease every day of your life. The patient is always the expert in her own disease because she lives with it.
I wouldn't waste time with NHS GPs. Most are not trained to understand thyroid issues. You can book a private GP for less than £100. Or go straight to a consultant, which obviously is a bit more expensive. I see an excellent consultant who is very open minded and listens to me, and we work together, so it's been great. Pm me if you would like their details.
If a private GP gets the same training as an NHS one then I'm struggling to see how they'll be any more knowledgeable. And there are plenty of storieson the forum of private Endos who are every bit as narrow minded and arrogant as their NHS counterparts. Obviously people need to do their research and choose carefully. Its a minefield.
I was sharing my experience, which is what this forum is for. Of course you have to do you own research, but having personal recommendations from others is what helped me, and so might help someone else.... hence my recommendation of a consultant.
My point was that personal recommendations are worth their weight in gold of course,but private isnt always better as a blanket statement.
We've had members use a private Endo, even some of those on the Thyroid UK list, who've come away extremely disappointed and considerably poorer.
Conversely there are some NHS Endos who are very good. I've never seen either so cant comment, never felt the need for an Endo of any persuasion, the consensus on the forum about their usefulness is mixed, to say the least.
I'm sorry to be blunt but I don't know what point you're trying to convey. I didn't say private is always better, and like I said, I was sharing my experience only, and it was positive, and so I made a recommendation, which as you say is worth its weight in gold. Perhaps if you haven't experienced either NHS or private consultants, you could direct your comments elsewhere, as I was speaking to the person who made the original post with my personal experience with a private consultant, which was very positive, and may be for others too. I'm sure that person can read all the other comments on this forum of both good and bad experiences by people who have actually seen both NHS and private consultants, and decide for themself.
I'm making the point that you said " book a private GP for less than £100 or go straight to a consultant". Not ask me for details about my particular excellent private Endo.
Yours might be fantastic, but there are plenty of duds and whilst I haven't seen an Endo I have used private medicine several times over the years and its very mixed. Private healthcare isnt always better. People assume that because they are paying handsomely that their care will be better. Its often a huge disappointment when its not.
Again, I said to the person who posted to Pm me for further details. I said 'I see an excellent consultant who is very open minded and listens to me, and we work together, so it's been great. Pm me if you would like their details.' Read properly before commenting.
I can read fine thank you and fyi this is an open forum where members will discuss issues and offer opinions, so I dont need your permission to direct my comments anywhere. If you want to engage with Jo Jo exclusively the PM button is available.
It is an open forum, which is why I offered my opinion based on my experience and offered to discuss with the original poster about my experience, and about the consultant via PM. If you or anyone else is going to comment, making factually inaccurate comments like saying I didn't offer to speak about a particular consultant, when I have, isn't particularly helpful. So read comments properly before deciding to say something. I have discussed with Jojo, so I have been happy to help in some way. I'll continue the discussion with Jojo as it's a better use of my time.
But that isnt what you started off with, if you'd said I have an excellent consultant whom I see privately then fair enough, I wouldn't have commented or even noticed, but actually you said in the first instance.
" I wouldn't waste time with NHS GPs. Most are not trained to understand thyroid issues. You can book a private GP for less than £100. Or go straight to a consultant, which obviously is a bit more expensive"
I'm quoting your actual words. Only then did you mention that you see a good private Endo. Which part is inaccurate?
Sounds sensible. All the best on your journey of recovery. Be persistent, and trust your instincts about your body, and your health. And don't be afraid to ask questions, and to do your own research and even bring that along with you to your consulations. You are the boss of your health, and doctors are there to advise you, not to make decisions for you.Best of luck! 😊
Thank you! Really appreciate that and agree with what you are saying. I do think I’m right about my thyroid and that I could try a small increase in thyroxine with my tsh of 1.9 without causing any issues, as last time my tsh was 1.9 and the thyroxine was increased everything was fine . It seems common sense to at least try an increase before they write off the thyroid as being the problem and look for other issues. I will try my very best to be the boss…the CEO of my own body!
Love that - CEO of our body!👍👍Yes, definitely agree that the thyroid should be sorted before looking at anything else because dysfunction with the thyroid can cause knock on effects on pretty much every other system in the body. If you can, get your T3, and thyroid antibodies tested too, as they are also important markers. You've probably also seen other posts about making sure your vitamin and mineral levels are also at an optimal, so worth checking those too. Feel free to PM if you want any other tips. Obviously what worked for me might not work for you, but recovering is a bit of trial and error in my experience.
Thank you. My last t3 was 3.4 (range that starts at 3.1) and i’m negative for tpo but positive for TGab. My vitamins are all pretty good and holding steady last check. I might add in some magnesium. My ferritin is low but I’m slowly working on it. I’ll check them all again later this year i think and see what’s going on. Thanks again x
That's all very well for those of us who can "go private" but I'm sure there are many people who are unwell, dying even, who don't have a hope in Hades of consulting with a private endo.
That's not a criticism of you.....but of the system that is supposed to care for us all.
I wonder how many patients are suffering (and dying) behind closed doors because they have no choice.
I see an excellent (private) consultant who is very open minded and listens to me, and we work together, so it's been great.
Just to add to my previous reply, the NHS has guidelines about the 'normal' range for TSH, and so GPs have to follow those, and generally don't prescribe any medication if your results are in this range. Interestingly in other countries, especially in the rest of Europe, and the US, the range is much narrower, so people are given treatment much earlier on. The NHS doesn't even give T3, except on extremely rare occasions after much haggling and complaining, even though some people clearly need it. It all just comes down to money because T3 is being sold to the NHS at an extortionate price. Treatment for thyroid issues is inadequate on the NHS unfortunately, and the best advice I can give you is your health is an investment, so if you can afford it, go and see a consultant privately, and then you can go back to you GP with a letter from the consultant to say you need to see him/her again, on the NHS. It's worth trying. Could save you literally years of bad health.
Try [ redacted clinic and doctor name ] free first phone consult. I've booked in for consult. You need up-to-date thyroid results. Have a look at his website. Its absolute hell trying to get anywhere with gp. Ive been told my results are normal. Hope this helps.
Hi lovedoncebefore, I would love to know your thoughts on [ redacted doctor name ] after you’ve had your consultation. I’ve looked at this company too. Long wait for the initial free consultation tho.
Yes unfortunately. My appointment is in June. He seems to offer thorough clinically proven results. You must have the proper thyroid blood test and it must be within 2 months of speaking with him.
I know not going to be popular with my thoughts here but bare with me as my journey sounds similar and I’m possibly a bit further along in my journey but we aren’t the same so this is only my experience. I’m totally aware of the gaslighting we get with Thyroid and other conditions and if don’t tick boxes it’s a no go… it’s maddening.
For best part of a decade I’ve researched and ticked off many things thrown at me, this shouldn’t happen. No one should end up researching to get to a point to argue about a condition to be as knowledgeable and more so in few areas to just put your symptoms and point across without being fobbed off … I had always thought my thyroid (although it’s definitely contributing factor for symptoms ) and my Hashimoto’s was completely to blame for my Musculoskeletal issues it’s there on black and white but never taken any notice of. I have seen 2 private endocrinologists which both excluded many other conditions but saw that my thyroid was still low in FT3 ranges regardless of any increases in medication and conversion wasn’t happening….I’ve had numerous MRIs seen 3 private orthopaedic consultants one neurologist and came to conclusions my Hip pelvis and vertebrae are very much ok but possibility of the facet causing nerve issues could be the problem and was about to start spinal injections as last resort until my last flare triggered out of hours consultation .
In late 2020 I had gone on hrt as perimenopausal initially it helped somewhat… but still getting problems but was able enough to cook wash myself as previously I was almost bedridden … and an out of hours Dr saw me and said this sounds gynaecological…I had for 5 or more years mentioned my late menopause mid cycle bleeding (had for almost 30yrs) could this be the reason, but been fobbed off over years but bleeding on hrt sent alarm bells and this was checked out, cyst adenomyosis found so ovarian cancer screening all came back ok luckily, and cyst was hormonal, skip on a few years on as still been on increased and decreased hrt and still problems so last year another scan… but if a palaver re NHS so saw private gynaecologist … I had 2 polyps removed Hysteroscopy d&c and coil fitted and I am somewhat better, just undergoing Decapeptyl injections as the latest gynaecological pelvic mri found found endometrial lesions on bowel and pelvic cavity.
I am oestrogen dominant and poor detoxification and my fluctuating hormones in perimenopause can be problematic for other areas and my high re circulating dirty oestrogen (not being removed) is not so good for thyroid, but obviously boosting my progesterone with hrt was the help initially.
My point is yes you are getting symptoms and yes thyroid is out of whack, as was mine but other hormones could be a contributing factor too, not just sex hormones, insulin and cortisol too… so if you can work with GP if they’re willing to check other things out… accept for now re thyroid and start looking if you have anything else you could be getting in the way…get things in a better place eg iron folate etc other conditions if any, and look if could be other underlying factors…its a long winded thing but honestly I’ve been on increasing doses of Levothyroxine and a year on Liothyronine and where initially things were better it stagnated and it seems at present my oestrogen dominance and hormones still won the battle… I haven’t yet had my FT3 looked at to see if oestrogen is the dampener on my conversion problems to know or if it’s something else entirely….I’ll be interested to see if it has had any impact on my blood test results. I have my 3rd injection tomorrow my energy levels are better during the day bleeding stopped and constipation vastly improved, although my sleep isn’t as good, quality wise and getting headaches more frequently (possibly side effects)…in comparisons to before… I’ve had only the odd twinge regarding my Musculoskeletal issues but doing more and muscle not been used for sometime, so to be expected.
Women are more prone to hormonal changes for obvious reasons so these can impact other functions. I got all my vitamins and levels perfect over years ruled out other underlying factors reduced my blood sugar not pre diabetic but higher end… my cholesterol is good I was checked out for cortisol Addisons other autoimmune Musculoskeletal diseases with over £3k of tests and further scans to rule out a skeletal problem… only thing left is hyper mobility only pelvis I seem more flexible and if it is this facet issues from degenerative disc but the discs are normal aging issues. Knowing Adenomyosis and Endometriosis can cause vast problems not just in the pelvic region…endometriosis is a whole body problem as it’s thought it’s spread through lymphatic system to anywhere… it might just be worth looking at other things with GP before spending a lot of money.
Initially other than a mid cycle bleed I have had since having my daughter , 30yrs ago I’ve had no other gynaecological problems at all …then perimenopause sent things off otherwise my thyroid treatment was biggest concern for me.
Thanks for your reply and sharing your story. You sound like you’ve really had a rough time of it and been through the mill. I’m on hrt (patch and vaginal hrt)and all the peri meno issues I had pre-hrt really are well controlled with that. I have had a horrendous peri meno and my symptoms started when i was in my thirties. I’ve had several trans-vaginal scans and everything has always been fine, apart from a small fibroid that hasn’t grown at all over the years. I believe that the severity of my symptoms was caused all along by being hypothyroid. I was diagnosed with cfs in 2019 when my tsh was also described as normal but i think it was around 2.8 or so at that time. They tested me then for lots of other issues and everything was ok. I think I’m very sensitive to changes in tsh/t4 whereas some people can have a tsh that goes over range and they feel fine, I was starting to feel ill when my was rising but still in range. What convinces me more than anything that it is a thyroid issue is how I felt when i went onto 75mcg. I started to feel well and lots of my musculoskeletal problems went away. I had a real glimpse for a while of what it felt like to be well. There may well be other things at play. So far my folate is good, B12 is good, Vit D not bad. Ferritin is low but I think thats due to heavy periods from being hypo. I’m working on improving that with diet and I’m not anaemic. I really think they need to give the thyroid treatment a fair trial before they start looking elsewhere. There’s no point half-treating stuff and moving on which is what they want me to do by the sounds of it. I did wonder about R.A because my mum has autoimmune thyroid and RA, but I don’t have any hot, swollen, or inflamed joints, just pain that comes and goes and is better when my t4 is in double figures near the top of the range. It’s a right bloody tangled web isn’t it. I have also been thinking about t3 issues. My last test showed a t3 of 3.4 on a range that started at 3.1. Surely that can’t be any good. I’ve also read some research into low t3 and cfs. I believe i need to get my t4 higher in the range before i decide about that. I hope you can find some answers.
I have had under range FT3 at 2.7 and at best when on Liothyronine the first 3 months I got 4.2 after 6 months I was back to 3.7 my average is 3.4 throwing more Levothyroxine just made FT4 go over did nothing for my FT3 and lowered TSH endocrinologist wasn’t bothered too much about micromanaging this TSH as there clearly conversion problems here with me but after initial benefits on increased doses I was back to square one months down the line. It was case of looking at what is blocking conversion as it’s your active T3 hormone that helps our symptoms much more I believe.
I’d say given you’ve already had possibly high oestrogen issues in the past as fibroids are oestrogen problems mostly it’s quite likely it could be a contributing factor… perimenopause has such roller coaster this still could be a possibility and hard to test as hormones change so much.
I hear you re thyroid I had similar experience I was adamant it was thyroid….and still seeing if it is … nothing conclusive yet.
If you google oestrogen and thyroid you can clearly see it’s not good for thyroid control. Everyone bangs on about protective oestrogen with hrt which is correct, but if we aren’t detoxing what we use this is worse and causes cascade of problems. Progesterone is definitely more thyroid friendly.
In my case constipation I’m not getting rid of the bad stuff.
This is thing I saw when just googled now , I’ve not checked all of it but I believe it’s similar to what read before in another article.
Thanks for sharing your experiences and I’ll definitely look at it further and bear it in mind as another possible route of investigation if things don’t change with the thyroid. Strange that your t3 won’t hold steady and keeps dropping even when you take t3…the thyroid is just plain weird!
Absolutely too many general symptoms being fobbed off as something else!
About time new test was found too TSH isn’t the full picture!
I just hope by sharing experiences that might be similar situation for another person and not to endure decade of suffering…and there are other things to look too.
If we are being blocked by NHS restrictions be it testing or gaslighting the topic, from our medical professionals, not just GPs… my approach is ok then if it’s not thyroid then that you’re telling me categorically is fine…then let’s look elsewhere until they have to accept there is something wrong with thyroid either as main culprit or symptoms of another conditions to find it …. And unless there’s a test to say nope it’s not that I always refer back to my extremely low FT3 and for umpteen time tell them the importance of this active hormone … that one test of mine of at least a dozen I get annually is always low in range and symptoms match up … I say ok then why! They usually can’t tell me Ive exhausted their capacity or NHS capacity.
I followed a chap on Instagram who explained other things can cause conversion problems not just genetic reasons eg deiodinase ones.
It’s a bit like calcium blocks zinc absorption and iron, but vitamin C helps there’s many nuances in how things work together or against.
I wish you well and not a long wait to better health ☺️
No it was just the first thing when I googled, there’s more out there on this if you look this topic up.
Oestrogen is excellent when balanced but behaves badly if out of balance both way too much and too little but if we aren’t removing used oestrogen then inflammatory things can happen.
Thanks, I’m looking into this following your post on the subject as I’ve been unwell (on top of the chronic AI rheumatoid condition) for over a year and despite ruling out cancer as indicated by bloods , I’m still just not right and looking for answers.
I saw a private Endo as no NHS Endo appointments. It was £280 for 40 minutes. I went in armed with bullet point questions and he was great. He contacted my NHS Endo and my ENT and really got them to wake up. Well worth the money.
same here just seen gp, she's ignored all my very Hypo ( same you constipation..+ other long list symptoms ) as long as labs test within ranges then we are fine..
Im asking where's my constipation come from while Im a very healthy eating no drink no smoke..2/3 of my hairs gone..anxiety..lots going on for years
Told her because of this Hypothyroidism untreated and its all flared up..
Told her some of knowledges I learned from here.. which she doesn't know.. she seem not happy and said Im very busy have to stop
Gp ignored and easier to put me to a mental health's supports rather than treat my illness 🫣 I know Im not the one !!
Being a mum of a Doctor (a psychologist) it’s one area they’ve never hit me with…yet!
I go in saying I am not looking for medication and having something to mask symptoms, I want diagnosis, tests if there are any and answers and if required to rule things out then let’s do it, and to do something myself to get results then be it, so usually in my instance they throw blood sugar levels at me …I was close to being pre diabetic on one blood test the next was ok nearly a decade ago but I am up the higher end so it’s always their go to🙄 I have had an oral glucose tolerance test and was fine, endocrinologist wasn’t interested in my levels as not significant.
Two years ago I took cardiologist to one side gave him a piece of my mind as he got my mum completely wrong my mum is deaf now and she got mixed up as not heard correctly, basically he just fobbed her off as old and not listening to her… absolutely nothing wrong with my mums mind … just didn’t like she wasn’t a yes person. He 3 times tried to give her a drug she was allergic too it wouldn’t kill her but be very uncomfortable not something when you have heart issues already so she made a song and dance and had her down as anxious hence trying 3 times with same drug… he was a very different person the next time he saw us!
She’s 80 very reclusive and deaf and that going to hospital was a big deal in that alone … just ignorant to her situation, no bedside manner, impatient as he’s busy!
Anyhow do in mean time try magnesium to help in short term with constipation (magnesium citrate) and anxiety one to go for is magnesium L-threonate and magnesium glycinate
I use Neutrient magnesium it has both biglycinate & citrate amongst others.
There are different types of magnesium, all have varying properties, you can also get magnesium sprays, oils, creams/body butters to put on your skin and flakes and salts for bath soaks in topical form of magnesium chloride.
I’ve seen many endocrinologists, and experienced how they ignore all the hypothyroid symptoms you list, and they tell you it’s not your thyroid causing the issues, because your test results say ‘normal range’. But maybe you’re emphasising the ‘wrong’ symptoms. I think I finally got through to one, and the buzz word was ‘cold’. I went into great detail about how cold I always felt, and all the keeping warm measures I had to take, (eg ‘double-vesting, double-fleecing, hot water bottles, thick duvet), and I could see in his face he finally believed me. Because it’s linked to low metabolic rate. Which is caused by hypothyroidism. You can get your metabolic rate tested - they do it for sports people all the time. Hypothyroidism used to be diagnosed by testing your metabolic rate before the blood tests were introduced. It might be worth a try going down that route. It got me a trial of T3.
I may be wrong but I think I read somewhere recently that they are only going to do TSH testing. I have been dropped down to 50mcg from 125mcg over a very short time...and it has affected how I feel. I've got a meds review coming up in a couple of weeks with one of our trainee GPs. I have my fingers crossed that he will up it 75mcg. That quick reduction took its toll on how I feel and my energy levels.
Never ever agree to dose reduction based on just TSH
Insist on FULL thyroid and vitamin testing at next test
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Yep. My doctor told me point blank that weight has nothing to do with the thyroid dosing. My TSH was 6.53 last week. I had to get an attitude with him to get a dose increase. Keep demanding is all I can say.
Oh I feel horrible. Constant low to mid back and gut pains, bone pains, but the foolish doctors are ignorant to symptoms. My TSH was always above 2 ever since I started levo, but arguing with doctors is stressful since "they are highly educated professionals". Today is my first day on my new dose. I hope you are able to get what you want.
I feel for you! I feel like I’ve been hit by a truck at 1.96! I hope the new dose gets it under control. I have that low/mid back ache too and bone pains, get them in my feet and shins. Awful. Arguing with doctors is souls destroying and exhausting - not right to have all that stress on top of feeling ill. Best wishes to you.
Apropos of nothing (except I see my naturopath today and I'm thinking out loud,) my TSH showed up as high at...5.8, I think...which surprised me because it's the second time in a year it's been high, (first time I've ever been tested more than once in a year,) and the second time I've been surprised because I'm NOT feeling particular symptoms.
Then I thought back...the test was actually six weeks ago, (it took a loonng time to see results this time,) and THEN, I was feeling particularly fatigued and depressed.
So, this part may seem like a no-brainer to you but no one ever explained to me how gluten affects thyroid (and I've been dealing with this for 16 years.) But when I was diagnosed with severe osteoporosis last year, I started researching gut health, went on an elimation diet, just to see if I could tell whether I had sensitivities or not. I couldn't really tell, but I stayed gluten-free just in case, until around Christmas. But because I had tested negative for celiac, and as I say, no one has (yet) explained why gluten might be bas for thyroid, I started eating sourdough bread. I looovvve sourdough bread and I just missed some decent toast in the morning. It is supposed to at least be lower gluten, right?
But as I say, I did start to feel more fatigued and depressed for no discernible reason, so I finally googled effects of gluten for gluten intolerant people, and lo, fatigue and depression. So I went back off gluten...and, I'm feeling better.
And just yesterday, I read that maybe for us, it's not just gluten intolerance, but that the thyroid...mistakes gluten for thyroid (not quite sure,) which was like. "Well for Pete's sake, why did no one ever tell me this?" Obviously, my US doctors don't think this is a thing or they WOULD say something...right?
I don't know what my TSH might be today, don't know if that's even how it interacts. Just I actually want to be cautious about upping my currently 112 mg dose any more (per the formula someone offered here, I should be more like 100 mg,) because overdosing hurts the bones and they need all the support they can get.
I just mention it because I never realized gluten had that effect on me. I wasn't someone who ever had easily recognizable digestive issues, so I figured I could eat what I wanted.
On that note, for whatever it's worth, my symptoms have never been well managed, and I've just accepted that some level of fatigue is a part of my life now.
I tested negative for coeliac and gluten sensitivity but thought I’d try gluten free anyway and have definitely felt a benefit - it has helped to control trapped wind, ibs symptoms, cramps and appetite and the hunger pangs/colic I used to feel. So that’s all good. I think it does help fatigue and joint pains, but only when my t4 is at a good level and then it works in harmony with that. I’ve found that when my t4 drops nothing works. Last time my tsh was 1.96 lat year my t4 I think was 9.8 on a range that started at 7. When my tsh was 4.7 my t4 was 9 (7-17) and that’s when i was diagnosed. I’ve also accepted fatigue is part of my life and i don’t expect to ever feel 100% but I know there is room for improvement because I’ve already experienced it last year when my tsh was 1.96 and my thyroxine was increased to 75 and all my symptoms improved.
Thanks, josephinius. I was finally diagnosed with CFS in 2019 (after a long history of strange symptoms and fatigue) which I actually think may have been related to hashimotos that was undiagnosed and starting to go hypo at that time. It’s only last year my tsh went over range and i tested positive for tgab so I feel like I’ve been flailing around in the dark looking for answers until the lightbulb flicked on last year. It’s a long old rocky road.
This happens - they act like we are lying and that everyone reacts so well to the levothyroxine and that we all get better but we dont and its common that we feel ill and terrible its so sad and so tough i have no solutions and have constant CFSME which is also thyroid hashoimotos trust me I am ill and no doctor has helped truthfully i know these situations at this point just instincts carry you on ..........best wishes truthfully go well
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New member. Blood result summary. Any advice welcome.
Advice please. Newly diagnosed Hashimoto
Nothing ever changes.....
Advice before I speak to my gp on Tuesday please
Doctor says that my thyroid is normal 
