Just writing to say I’m furious, since October I’ve gained almost 2 stone and been too unwell to gym. I’m underdosed and suffering badly in the form of aches and pains and tiredness but almost getting back to the point where I can’t sleep at night again 😡 I literally have no clothes that fit me and I refuse to buy more but I’m getting to my wits end! Why on earth are the drs so shite!!! She told me herself I’m underdosed but won’t bloody increase it until I’m ‘out of range’ again! I’m fuming! And also Thankyou for the advice for blood tests, my dad had to have an urgent blood test and after following my advice that I got on here his thyroid is also out of range and he is having bloods again in 3months... he is really overweight and has very low hr so I wouldn’t be surprised if he’s also had it for a long time!! Thankyou guys xx
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Rosie2m
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Hi Rosie, I’ve come to the conclusion that it really is down to metabolism and if youre undertreated that is really crap, and cruel. Change your GP. Weight gain isn’t good for health either. Do you still have that lump feeling in your throat and dry mouth? x
The thing is this is already the 2nd gp at the practice, it seems all the old drs have gone and we are now left with new arrogant drs who don’t actually care about the patient 😔 I feel if I do what she’s asked I can at least argue that I’ve tried her way but it hasn’t work and now I want an increase. The lump feeing has mostly gone, it’s nowhere near as often as it was before. The mouth thing has minimised too but flares up worse occasionally when I eat certain things it’s there all the time but not like it was. X
Can you change surgeries? I really would if I were you. Its damaging your health. I also wondered if you had Sjogrens autoimmune too, as you have the same symptoms as me x
I have thought about it but the other surgeries around don’t seem to fair much better and I’d have to move the whole family. I’ll google that sjogrens as I don’t know anything about it x
You dont need to move all your family. You could all be at different ones depending on individual needs. Setting a good example of not accepting less than you deserve x
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
I’ll reply to both your replies on this one, I asked at my last appt if I could get referred to an endo if my symptoms don’t improve and she said no point blank! I’ve been on 50mcg since end of Nov and after my last blood test she won’t increase it regardless of symptoms... she put half of them down to depression which is a load of bull as I know 💯 I’m not depressed! I can’t have another blood test til 3months have passed, I have my thriva test which I am planning on doing the end of the coming week so I will post those results when I get them xx
Hello, when I read your post I thought I must have written it myself; Me: rapid weight gain and clothes don’t fit-used to run/walk 60k per week too unwell now, fatigue all day and insomnia at night, aches and pains have reduced although still having regular attack of hives, hair loss, dry and peeling skin, now broken blood vessels and tiny spots on skin, within range for bloods except high phosphate reading, parathyroid and Vit D both normal. Had NHS Endo appt booked for this month but now put back to end March. Could probably cope with most symptoms but weight gain and loss of appetite is really getting me down-feel like I am sitting in a fat suit and my old self is in there somewhere, very lost.. Mood slightly better although still not stable and brain fog and fugue which I have learnt to love with. Hashimoto's diagnosed 5 months ago although I have been going to GP for 2years previous to that with consistent symptoms. Wouldn’t test for Hashimoto's as GP believed it to be Menopause in spite of me informing that my mum had the same condition. Put it down to menopause and stared HRT which was useless and then later offered statins when cholesterol raised. Demanded anti- bodies tests and received call back with apology and started Levi thyroxine that day. Long journey to date and sounds as though still to come. Cholesterol now back to normal thankfully.
It’s so frustrating isn’t it that the drs just don’t seem to listen, I understand they have a lot of training excetra but they should also appreciate that we know our bodies and actually they don’t know everything. I’m glad you are feeling a bit better, hopefully that continues for you xx
It's very depressing to think that our GPs are not receiving training in thyroid,when it is a gland that needs to be working optimally for us to feel well and have the energy to cope with what ever life demands of us.......I despair!
Where is the NHS heading to? Things have got to change.We need to be able to discuss our health with our GPs without being instantly silenced.
Optimal treatment for Thyroid problems first please.That is our priority ,before trying to fill us with other drugs such as Statins etc... which we may not need.
Surely Thyroid health needs to have more priority in medical training,than to keep us under medicated ,in some cases for many years.Please,someone tell them what T3 is and what it does.
Yes, well, we know all that. But, then, we're not doctors. We're patients, on the sharp end of thyroid treatment! But, nothing is going to change whilst Big Pharma holds the whip-hand. They also hold the purse strings, funding medical schools, and can therefore decide what doctors learn and what they don't. And, it's not in BP's interest to have doctors knowing too much about thyroid. If doctors actually got hypos well, we wouldn't need that myriad of drugs designed to 'treat' our symptoms - like statins and antidepressants, etc. BP would lose a lot of money! So, they keep doctors ignorant precisely because this is such an important gland, and teach them that it's no big deal, and we're all a bunch of hysterical women, exaggerating our symptoms, and looking for excuses for putting on weight. What is really amazing is that doctors fall for it! Makes you wonder exactly what sort of person is drawn to medicine, and why!
Yes,I think you are right in all that you are saying and I can only think that I touched on a raw nerve.When he said he didn't know much about T3 and I naturally commented " but it's the active hormone .............." He reacted so quickly saying that he didn't need a lectureand not to argue with him,which I objected to because I was only there to confirm what was going to happen now that he is no longer prescribing my T3, I felt quite upset.I've been a patient at that surgery for over 50 years ,after my previous surgery closed because of both doctors retiring.
Everyone has always been pleasant to me and I to them.I think the current situation with T3 via NHS prescriptions is going to cause a lot of upset for many .
However,a phone call from my Endo's secretary has confirmed that all will be well for me and he will take over my prescriptions,which has put my mind at rest.I am indeed fortunate for that and hope that others will get sorted too.
How dare he tell you not to argue with him! Who the hell does he think he is? Especially when he's just admitted he knows nothing about it. Yes, I think you did touch a raw nerve, but that's his fault, not yours. That doesn't give him the right to react like that. Most unprofessional!
Thanks Greygoose.I have to say that I feel I can no longer have any confidence in him.I certainly didn't appreciate being spoken to like I was some argumentative teenage brat . When we can pick up any thyroid book or go on line to increase our knowledge............Big Pharma watch out !!
I'd like to think we could be some sort of threat to them, but… The difficulty is getting the word out. Not everybody in our position has a computer, and if they're being under-treated for a thyroid condition, would it even occur to them to go to a book shop or the library (are there still libraries in the UK?) and read a book on thyroid? Most of them still implicitly trust their doctors - you even get people on here saying they trust their doctors! Which is very strange.
As to the way your GP spoke to you, have you consider writing a letter of complaint? He who says nothing, agrees!
I'm not very used to being confrontational.The whole point is that we don't have the energy for it all.
I have recently had to contend with structural engineers brick workers,decorators and insurance claims and purchasing a new car,after a negligent driver,lost control of her automatic thus backing into my parked car pushing it forward onto my house wall.The car, with only 6,000+ miles on it was a write off and my house brickwork needed rebuilding and hall completely redecorating.Then next morning I get the T3 letter from my GP!!....... Great.!! You begin to wonder if someone is trying to tell you something.
I am though thinking of contacting my MP when ready as we need to get recognition for what is happening, for the sake of future sufferers.
The whole point is that we don't have the energy for it all.
That is absolutely true. And, I think they know that, and take advantage of it. But I was just thinking about a quick letter to the practice manager expressing your dissatisfaction with this GP and his attitude. They really ought to know about these things. GPs should be accountable for their actions. They are not god and they don't rule the world. They are governed by the same rules as the rest of us - written and unwritten. They do not have special dispensation to treat their patients like dirt.
I'm so sorry to hear about your house and your car. What a terrible thing to happen! Hope it all gets sorted out soon.
Yes,thank goodness my house is all now back to normal and scaffold poles gone.
I was so pleased with the work done that I may well ask them to do some further decorating for me.I used to love doing it but that enthusiasm has all now gone!!
I think I will leave my GP to now ponder on his behaviour himself, and I will go to someone else when I need help. A few weeks have passed since seeing him so I shall see my Endo and take it from there.He does lectures, being at a teaching hospital so may be he will see there's a need for one on "The Importance of T3 "........
Now that is making me smile......When I was a teenager I played the part of Gwendoline Fairfax in " The Importance of Being Earnest "............ Those were the days........
I once read that GP's current knowledge comes mostly from drug reps ! That was probably an American article but hey I'm sure it is the case elsewhere !
In the English hospital department I work in, lunchtime "educational" meetings are a weekly thing (with lunch and usually the education provided by the rep). Reps also sponsor individuals to attend conferences and meetings.
They are no longer allowed to give out pens and post-it notes with their logo on, though, which of course has stopped corruption completely in its tracks!😏
ALWAYS get FULL thyroid and vitamin testing BEFORE seeing any thyroid specialist
Privately if GP is unhelpful
Essential to get vitamin levels optimal. That frequently means self supplementing if not actually deficient
Are you on strictly gluten free diet or tried it
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Hello, I am on 100 daily, titrated slowly from 25 (approx 4 months). Thanks for the tip about bloods and vitamin results, haven’t done this before and will do before I see endorse next month. Have just requested results as need to get more savvy about knowing my levels etc. Used to take vitamin supplements daily as felt so poorly but don’t take so much now so don’t interfere with thyroid function. Am on a semi gluten free diet and don’t eat bread at all but haven’t really noticed many benefits although not 💯 tested. Used to exercise excessively before my diagnosis to increase mood and it worked but since meds haven’t been able to face exercise as feel sluggish.
Gluten free diet only works if it’s absolutely strictly gluten free. No shared cutting board, no shared butter, jam etc. GF toast in separate toaster
Most hashimoto’s patients need to supplement virtually continuously to maintain optimal vitamin levels
Important to test vitamin levels at least annually, ideally twice year
Always get actual results and ranges. Vitamins need to be OPTIMAL
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hello, that is really useful thank you-I didn’t realise I needed specific vitamin supplement or testing. Will get onto this now. The current levothyroxine brand I am taking is North Star 🌟 hadn’t even thought to check that either to be honest. Info from GP has been really poor. Just learned I also need a hysterectomy for enlarged uterine fibroids and after research realise this might also be linked.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or any PPI or vitamin D should be four hours away
Could you hang on - fibroids usually shrink at menopause. I would say there is a thyroid link even though I didn't know I had Hashimotos when struggling with fibroids. I had read - Womens Bodies Womens Wisdom - by Christiane Northrupp- so didn't go to a Doc as I was determined to keep my uterus !
I have been hanging on for 7 years, previously had an ablation which was supposed to shrink fibroids although they started to grow again at pace throughout menopause; have awaited the end of menopause to see if they shrank. Now confirmed as post menopause and they continue to grow. Dr describes me as someone who defies the logic and rules and gynaecologist who is highly recommended agrees only option left is hysterectomy which I now welcome as symptoms are getting increasingly worse, back ache, pressing on bladder, slight incontinence and pelvic pain. I currently look 8 months pregnant and have been advised to wear maternity trousers so in a pretty bad way to be honest although not a day off work in all this time and not allowing it to affect my life too much although secretly it does!.
May be the results are with your GP for oestrogen and progesterone etc. Fibroids are linked with oestrogen levels so as your have not decreased it may suggest your levels are raised .. if progesterone is low then treating may help. All hormones are linked ....
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
I have been reading your replies with interest Lassithi as I am also having problems at the moment.I take Actavis levo along with 10mcgs T3 and did have a Levo prescription which was Northstar which I believe is just the same as Actavis.
May I ask what the batch numbers are on your current meds as I have wondered if I've had problem batches.Just a thought as I too am struggling more than usual
I'm not sleeping well,have itchy skin and dry skin on legs,muscular pain and a general feeling of malaise which is not the usual me.
My new batches are Accord which was Actavis so will see what happens with them and will get a new T3 prescription on Monday.
Sounds very similar to my symptoms, constant itching and dry skin, no difficulty falling asleep initially but wake up after approx 2-3 hrs sleep and then awake 3-4 hrs thereafter.
The batch/lot number of current Levi (Northstar) is:
Thanks for replying.My Batch number was 1490 exp 01/2021.
However, I am just starting new batches of T4 under the Accord Label ,previously Actavis.
I will see how I get on with them .I will also ask my Endo tomorrow if there has been
any known problems ,with different brands.If my T3 Lio is now going to be prescribed at the hospital,it will likely be Mercury Pharma.I will enquire at their pharmacy to see what T4 they stock too.
Yes, there is no difference for my medication which was Actavis 100/75 mcgs ........same packages but with Accord written on them.I rejected Teva some years back .
I think I have previously said that I split a 50 mcgs pill to get my 75mcgs.
According to Dr Kendrick (lovely man) ‘high’ cholesterol is not a problem, low cholesterol is.
I’m sure that you’ve read on here that ‘normal’ and ‘optimal’ are two different things and one should never rely on a blood test that comes back as ‘normal’ or ‘in range’. I feel for you as I had symptoms for 30 years and nothing was done, it was only when I went to a private doctor that he diagnosed hypothyroidism and started me on NDT. It wasn’t plain sailing after that but things got better as I learnt more and more (this site is excellent). I now self-medicate, only because I have no other option.
Change your doctor. Ignorance is not bliss when it comes to trying to become stable on a new dose of thyroid hormones.
A regular increase in dose is required for which the aim is a TSH of 1 or lower (not somewhere in the range) and FT4 and FT3 should be in the upper part of the ranges.
Many doctors are so poorly trained that the patient suffers (I think the doctor is worried about causing you harm if she increases dose) but it proves to us, hypo sufferers, that they need retraining - not just a five minute course on the TSH alone. TSH =(thyroid stimulating hormone) is from the pituitary gland and rises to try to flag a thyroid gland to produce more hormones.
If your doctor is stubborn (maybe she is protecting herself by being ultra-cautious) but you cannot afford your health to get worse.
As thyroid hormones run our whole metabolism weight gain is a common complaint as we need to be on a dose which relieves all symptoms and which doesn't increase weight.
Both the drs I have seen clearly know nothing about thyroid, the 2nd one knew more than the first which gave me hope but that’s dwindled very quickly 😩 x
New NICE guidelines now recommend starting patients on full replacement dose of 1.6mcg levothyroxine per kilo of you weight
Now many hashimoto’s patients would struggle with such a sudden input, especially if vitamin levels are low
However I suspect the guideline has been updated because literally thousands and thousands of patients are being left too long on totally inadequate dose levothyroxine for months/ years
Try a different doctor and keep trying different doctor until you find one that is up to speed
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.
Thankyou, that is my ammo for my next apt ready to argue that my dose it too low! The last few days my hr has dropped into the 40’s again like it was before I started treatment... I must be an ultra fit athlete with a heart rate like that 😂😂 x
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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Thanks-I agree; I think you need to change your GP, most GP’s have very limited knowledge of this speciality. You need someone who at least will listen to you-I am in the process of changing my GP although didn’t until I got my diagnosis as didn’t want to do battle with a new practice. Good Luck 😉
‘She told me herself I’m underdosed but won’t bloody increase it until I’m ‘out of range’ again!’
Good grief describing her as shite is an understatement. This translates to: ‘I know I’m making you unwell and I could do something about it, but I’m not going to until you get even more unwell!’ I’d be asking if she took the same approach with diabetics, cancer patients and even broken legs! She’ll tell you you’re depressed next or imagining the symptoms because you are a nutter who eats a lot. If you are on 50mg, your TSH may not rise enough to get an increase.
You have a few choices - none of which you should have to face. Take in the evidence and argue the toss about TSH with her and what she is doing; change GP again; go to a private endo (if you can afford to), who might whip her ass (mine sends letters to GPs that put them right!) or self-treat. You shouldn’t be having to put up with this cr*p. It’s makes me so angry! 🤸🏿♀️🥛
MissGrace she has already told me at my last appt that a lot of my symptoms also indicate ‘depression’ when I know I am not depressed, I told her I don’t feel depressed and her response was.... you can have depression and not feel depressed 🙄 I just thought to myself.... you clearly don’t know anything about thyroid! X
i think its true that you can have physical symptoms without feeling 'sad'. That said, it always seems to be the case that having symptoms of depression are accepted and treated, whereas hypothyroid symptoms are not.
The thing is I have only had all of these crossover symptoms since this thyroid issue has started.. and all symptoms have improved (well had) when I started levo... to me that shows that they are thyroid symptoms not that of depression. She wouldn’t listen to that reasoning even after admitting herself that I’m underdosed.
i would change my Dr, even it means a long journey (leave the family with that surgery if it suits).
She s not listening to you about depression, and she s misinterpreting guidelines. i'm assuming that the thing about not changing dose until you re out of range, comes from Section 1.4.1 of NICE GUIDELINES
1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine.
BUT THEN SAYS
If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
If you really dont feel ready to change Dr, then i would show her those guidelines. they re new so it shouldnt be a big thing to point out something of which she was unaware (!!)
In these circumstances, I keep telling myself that if I wasnt happy with a different kind of service provider, I wouldnt use them again. But we return again and again to Dr for less than adequate results.
Im on a roll with this analogy now: You go to the hairdressers complaining that your hair is limp and lifeless. You know that its possible to have a treatment and a decent cut, which may or may not help (cos you know you're hypo, so it may not help...) but your hairdresser states that she doesnt do that kind of thing, that you ll have what yiu re given. You tell her that its so difficult to manage, you need help, and so she tells you that you might be showing signs of needing a skinhead. You tell her you dont think so, she responds that you might not realise you need a skinhead. She eventually runs a comb through your hair, puts a bit of spray on and says, if that doesnt work, then next time we'll shave it off. You d run a mile (i hope)
I realise that many of us hypos do have kind of similar conversations with our hairdressers, but I hope you see what i mean
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