I’ve been here before (the forum) but lost all my logon details so I’ve re-registered. I’m hitting the usual brick wall with my GP, so I’ll try once more before I do something I’m unhappy about,but I’m getting desperate.
Briefly, my TSH is slowly increasing. By which I mean that my most recent results have been:
Sept 23: 1.42
Nov 23: 1.69
both of these on NHS test via GP (and this November result was after being tested in the afternoon because although I should have had a fasting test first thing, that’s not what I was offered…)
Jan 24: 2.31 via Medichecks.
I participated in the Future Health survey in November, and at that time they measured my cholesterol at 9.11 (eek) so I contacted my GP surgery to get a retest as I was advised at the Future Health screening that their results aren’t as accurate as from the GP. I said to my doctor specifically that of course my cholesterol was increasing because of my thyroid, and he seemed a bit surprised that I was even aware that this could happen. I’ve had statins before, for six months, when I was first diagnosed with Hashi’s..but I negotiated with my GP that once my TSH was under control, I could stop them and see if Levo would take care of my cholesterol level as well as my Thyroid. After 6 months on statins, my cholesterol had dropped like a stone, and I stopped statins with my GP’s blessing.
Anyway, at my last GP appt on December 1st, with my cholesterol results (actually a LOT lower than 9.11: the NHS test came back at 6.1) and my November TSH result, my GP was desperate to put me back on statins. This, despite me saying that I’m starting to feel worse in terms of thyroid symptoms. I’m gaining weight, losing hair, sleeping badly..and yes, my cholesterol is elevated. I’ve only ever been on 50mcg of levothyroxine, and I really feel that it needs reviewing and increasing, and that doing so would probably help reduce my cholesterol as well as helping my hypo symptoms.
I need to book another blood test shortly, as my GP wanted a review in 3 months to check my cholesterol and thyroid function.
My question is, are there any other arguments I should be making to my GP regarding an increase in my thyroid meds? I’m primarily concerned that it’s easy for them to give me statins for my cholesterol, but that’s just masking the issue that it’s my thyroid which is the root problem. I’m getting very close to taking matters into my own hands and increasing my dose myself.
As an aside, I have a very healthy diet, never had high cholesterol before my thyroid health declined, and don’t have a family history of high cholesterol.
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Croixblanches
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The NHS simply don't offer the tests that we need to see whats happening and give the big picture of thyroid function. Members in this group pay for private tests which would give you more evidence to show your GP.
Your TSH is too high. Most people feel well when their TSH is at 1 or under and only being on 50mcg Levo isn't going to get you there.
Are you a tiny person?
NICE guidelines mention a dose by weight estimated final dose (this isn't precise but a guide).
Weight in kilos x 1.6 = estimated Levo dose required.
You could mention this to your GP and highlight the right part in the NICE guidelines.
What are your most recent results for ferritin, folate, B12 & D3?
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Thank you! I’m aware of most of what you say: as I mentioned, I’ve been here before and I’m familiar with a lot of your points. That doesn’t mean to say I’m ungrateful for the reiteration, just that I’m doing a lot of what you suggest, including getting private tests from Medichecks.
I’m not a tiny person, sadly, neither in stature nor, thanks to my thyroid, in girth. 😂
I’m grateful for the link to the NICE guidelines re adjusting dosage for weight, as I was sure I’d seen this somewhere. I’m slightly confused that I also keep reading that dosage of levo should be lower for over 65’s. That’s also me!
I’m taking all the usual supplements and have done for some time. I’m also aware that I need to stop taking B vits before testing. My last Medichecks test wasn’t the full one, as I’m not financially able to do that every time, however my January test came back with free T3 at 3.9 (range 3.1-6.8) so bottom end, and free thyroxine 15.7 (range 12-22). Less relevant but FWIW, thyroid antibodies both still (literally)off the scale. My serum ferritin was low in November when last tested (at 48 ug/l ) by my GP, so I’ve stepped up on supplementing, but not yet had a retest. The rest (D, B12 etc) I need to get tested again, as it’s been a while since they were last done, but I do supplement for all.
ETA: I’ve not yet shared the Medichecks results with my GP, as I’m due blood tests within the next couple of weeks including thyroid, and I wanted to see those results before I share the Medichecks ones, so I can present them as part of the progression. I feel it likely that my TSH level may have increased still further by then.
Yes…I’ve been gluten and dairy free for nearly 4 years.
Thanks for the FT3 and FT4 info. I will try and explain to the boy wonder that I really do need more levo, and this will be very helpful.
..and then I’ll get the usual snotty reminder at the time of booking my appointment that I only have 10 minutes in which to convince him of my problem. It’s like Dragons’ Den…(no reflection on you intended!)
Hi, sounds similar to me. However, everytime I stop taking levo, (I run out as this is the 2nd time not able to get) my joints stop hurting, so more energy, I feel great, been off levo for 3 months , dud have a week supply in reserve, which started to take in January, within days, joints seized up again. Stopped, pain gone. Doc won't believe there's a link. Huh. So, how very important is tsh? As tests all she's wants to test with me off the levo.
Seriously considering going to slaughter house for pigs thyroid to dehydrate.
25 years, doc's haven't helped squat.
I'm thinking of ditching the lot, letting nature take its course. If the universe wants me to live. I will
Vitamins really only need to be tested once a year other than vit D which is twice a year until you get a feel for how much vit D you need summer and winter.
Although your FT3 is bottom of range you have plenty of room to increase Levo which might bring it up to a much better level.
Its really important (other than surprise thyroid tests) to book at 9am or before for your thyroid bloods. Especially if your GP is a hands in pocket type of GP. This is when TSH is highest.
Getting a dose increase can also be achieved by learning the art of negotiation and persuasion with your GP. Often asking for a trial of 12.5mcgs or 25mcgs can seem less daunting for them.
Yep, you’re so right! My plan was to do exactly this..and if unsuccessful, to do a short trial of self medicating at an increased dose. I’m loathe to do it, but frankly I’m also fed up of feeling progressively as if I’m sliding back to square 1 and getting nowhere with asking for help. My last TSH test was supposed to be a fasting, first thing test, but I was invited at 3pm, so I wrongly assumed that someone had decided just to test cholesterol and that fasting etc. didn’t matter. When I arrived, the (locum) nurse said “did they tell you you should have had a fasting test?” And, when I said no, replied “You’re the fourth person today that this has happened to”
Yes, you’re right, of course. I actually had no idea that my thyroid function was to be retested at that test. I honestly thought it was just going to be cholesterol. We live and learn!
I've been through from 50mcg to 125mcg and back. T4 range from 6.1-10.50Tsh, .10 - 6.1. T3, .93-1.04.(just to see fluctuations)
Since 2011.
My joints seize up, the pain is too much to bear, stop taking levo, pain stopped, 3 months on, no pain. Getting blood test tomorrow, only t4 and tsh , as "nothing else matters" but let's see levels on no levo.
Your last post here was 1 year ago. Stick around here a bit more often, post results (with ranges for each test), get your vitamin levels checked, supplement levels to OPTIMAL. Also learn from members here how to self advocate with your GP.
These are my top tips to improving your thyroid health.
What is your doctor's excuse for not increasing your dose?
My question is, are there any other arguments I should be making to my GP regarding an increase in my thyroid meds?
Well, there's your general health, for one thing. If your TSH is too high, it means your thyroid hormones are too low - and it's low T3 that causes high cholesterol.
But, I guess he just wants to prescribe statins because it's more lucrative for him. But, if you artificually reduce your cholesterol with statins, you are also going to reduce your sex hormones - they are made of cholesterol. And, given that you are already hormonally-challanged, that would not be a good thing.
Don't be afraid of cholesterol, it is not your enemy. And it doesn't cause heart attacks or strokes as doctors would have you believe. Your body is largely made of cholesterol so needs it for running repairs, as it were - especially in the arteries. So, it's far more dangerous to have low cholesterol than high.
And, it has nothing to do with your diet. It's made in the liver, and the liver keeps levels stable by making more when you consume less, and vice versa. However, when T3 is low, the body cannot process cholesterol correctly, and it tends to mount up in the blood.
My doctor’s reason…? Well, I bet you’ll be surprised to learn that he thinks I’m fine because my TSH is (drumroll) “within range” . I can’t take him seriously anyway as he’s about 14.
Last time I was on statins, after 3 months my total cholesterol had dropped from 7.8 to 3.2.. the GP said he’d never seen anyone’s cholesterol drop so far, so fast. However, until recently, it has chugged along quite happily at around 5 without any help from statins.
Not surprised you can't take him seriously, he's a joke! Can he not see the connection between cholesterol and thyroid hormone levels now that it's been pointed out to him? If your TSH keeps rising, it means your FT3 is dropping, so your Cholesterol will also rise. It's not that difficult to understand even for a 14 year-old?
I tried…Lesson learned, I must try harder. He did seem awfully surprised when I said I considered my cholesterol was increasing because my thyroid was getting worse. His exact words were “Oh, what makes you think that?” I kid you not.
Also, they’re always on my case about weight gain, which, although I’ve gained -and lost - and gained again the best part of 20kg, I keep saying will not budge. I know why, YOU know why, but every time I have to explain that I cook ALL my food from scratch, eat a balanced diet comprising protein mainly from fish and white meat, but vegan/veggie at least 3x a week, haven’t seen the inside of a McDonalds since my kids were at school, have never in my life eaten KFC and I’m gluten and dairy free. The practice nurse once went very passive aggressive on me about eating walnuts (she told me they were bad for me. They might be, but not in the form of a tablespoon full in a salad!) and pears (“full of sugar”) , but when I realised she was referring for her inspiration to a page from the Daily Mail pinned to the wall, I stopped listening.
Ah well, sound advice from all here as usual, and some vindication of both my thinking and planned tactics. I’ll try (yet) again..fingers crossed!
He did seem awfully surprised when I said I considered my cholesterol was increasing because my thyroid was getting worse. His exact words were “Oh, what makes you think that?” I kid you not.
Print this out and give it to him …..he might learn something
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Thank you! I did take him through what happened last time - when I persuaded another GP to let me off statins and see if levo alone would moderate my cholesterol - which it did. I told him my cholesterol literally plummeted when on both statins and levo. His reply? "Well, that's what we *want*"..I'll give it another go. I think I need to labour a couple of the points I made last time. My deepest concern is that of course if my cholesterol is fine, its to some extent masking what's going on with my thyroid. But you knew that.
Oh, tell me about it! I've had that problem for most of my life!!! And you wouldn't believe some of the nutritional 'advice' I've been given by doctors to lose weight. It would be funny if it weren't actually dangerous because they advise cutting out all traces of fat in the diet. Low/no-fat diets are dangerous. The body needs fat. But, you might just as well ask the man sitting next to you on the bus, because doctors/nurses just don't have a clue about nutrition - and neither do hospital nutritionists, from my experience!
And as for cholesterol... Doctors used to know it was a hypo symptom because that used to be how they diagnosed hypothyroidism, before the invention of the damned TSH test. But now the connection just isn't taught anymore. We're going backwards, not forwards, I'm afraid.
Other GP (female, probably about 12) listened to me explain my dietary habits then said “well, I’ll ping you across a leaflet anyway”. The leaflet explained how to do everything I’m already doing, and some things I wouldn’t dream of doing. And yes, it was a “low-fat diet sheet”.
I’ve resorted also to keeping a food diary prior to my next appointment. This, also, should demonstrate that something is definitely not right.
Oh, I wouldn't count on it! I did that once for a doctor - never again! I didn't have much appetite at that time and ate very little, but he wouldn't believe me. And he went absolutely bananas when he read: Two boiled eggs and three small slices of bread and butter (and they were very small!). He didn't say if it was the bread, the eggs or the butter he objected to, but he ranted and raved for about ten minutes, looking at me as if I was some sort of criminal. The only 'meal' he approved of was a small plate of poached courgettes with garlic. Can't remember how I came to eat that, and only that, but he beamed with pleasure. That's a good meal, he said. Right. I can't imagine him sitting down to a plate of boiled courgettes! And if that's all I ever ate, I'd be dead within a week. They just have no idea!
And, yes, he gave me the no-fat leaflet, too. I took it home, read it, took it back and threw it at him!
I’ve taken to consuming a number of protein shakes. Not that I advocate their use, but they allow me to say categorically the breakdown of what I’ve consumed. I know the calories, carbs, protein and fat. I’m not living on them, ( I couldn’t) but they at least help me prove a point.
Just for info, I’m possibly 2kg over what’s considered to be a “healthy “ BMI, but you’d think I was ready for a gastric band the way they talk to me at the surgery, with veiled threats about type 2 diabetes and concerns about my heart. I am personally a bit unhappy about my weight gain, as I feel uncomfortable, and the fact remains that I’m still 10kg heavier than I was when I began my thyroid journey, so I’d love to lose at least half of that..but it’s secondary to being correctly medicated and feeling generally well. God knows how they talk to people who have Mc Donald’s and KFC on their Deliveroo speed dial…
Oh, I know. They make you feel so bad about yourself. And, what's even more galling is that the cannot distinguish between fat and water-retention. Two entirely different things. What you eat is not going to have any effect on water-retention.
They also used to treat hypothyroidism with dehydrated complete thyroid gland, before big pharma took over that one. I'm very wary of online remedies, but there is a dry bovine complete thyroid gland in capsules. I'm very tempted. What do you think?
Yes, we call it NDT. And it is still highly regulated with known quantities of T4 and T3. The bovine variety tend to be what we call glandulars and are OTC because they do not state how much hormone they have in them, and are considered to be food supplements. This one might be different, I don't know, as you haven't named it. But I would not take a thyroid glandular without knowing if and how much hormone is in it.
But, that's just my opinion, a lot of people do take them, and some people do well on them.
I have no faith in doctors, and haven't had for a long, long time.
Just occurred to me also, I was on depo provera since 1992, diagnosed hashimoto 2000, stopped depo 2018, lost 22 kilo 2019, went through menopause 2020 in a whirlwind, November had highest t3 reading I've ever had. Can your body heal itself after so long do you think? Thank you for your input, I really value your opinion
Depends which bit of it. Some bits can, some can't. I don't know much about depo provera but I have read that it can affect your bones, making them porous, if you're on it for more than two years. And they may not recover.
I was on it for nearly 30 years, bone density normal. Yeah, I'm a conundrum. So, sat outside lab, enfo asked for tsh and t4, pish posh, not going back to quack for her yo tell me to take pills that pretty much disable me, so, do I get t3 or ft3? I'm only bothered about that at this point, or should I look at something else?
I'm afraid I cannot make head nor tail of these results - too many numbers and not enough spaces. To be clear, results should be written like this:
Date
TSH result (range)
FT4 result (range)
FT3 result (range)
Just giving a list of TSH numbers and then FT4, and then FT3 doesn't help interpretation because we need to see all three numbers together from the same date.
But, could you copy and paste this into your own question/thread, please? Because tacking it onto someone else's thread gets very confusing for everyone. Thank you.
I know doc is going to do nut on tsh level, should I be worried, as ft3 , ok. I feel good. This was non fasting, as she said didn't need to be fasting. I think that was a ploy to get a high reading.
My doctor said my cholesterol was higher than last time, I said, the total yes because my hdl was higher, plus my arteries are "perfect"as the technician said, and nothing wrong with my heart says the cardiologist, I should be able to lose weight easily, cheeky bar steward, told him I'd lost 22 kilos and it wasn't easy by any means. So when I was offered statins , I gave a drawn out, noooooo. Told my gp, don't care about cholesterol, linked to low t3, she was taken aback, but didn't argue the case, or bring it up again.
I'm afraid the very fragile faith in doctors is gone.
Can you just up the dose without telling your Gp? I doubt they'll be counting how many tablets you've used when you ask for a new prescription sooner than usual.
I’ve already laid a cunning plan and acquired some extra supplies. I’m just reluctant to dive into self medicating until after I see what my bloods results are and have another chat with my GP. I’m hoping, slightly perversely, that the upward trend in my TSH level has carried on, and that by early March when my blood test is due, it will have gone up still further. That way, I think I’ll have an even stronger case for upping my dose. Especially as the statins will have taken the cholesterol issue out of the equation, so we can concentrate on just the thyroid issue.
This is a comment on the general handling of GPs following my long experience of many of that species. I’ve been through the lot, from a regular refusal to take symptoms into account until I was pretty well on the floor. When levo didn’t work for me at all I resorted to self medication with dessicated thyroid, and was left untested and nearly refused all care, even unrelated to thyroid. I won that argument by asking how I would be treated if I were a druggie, or a smoker. Since then I have been tested including FT3 annually, or on request if something changes. It has had beneficial effects in other ways, and my GP (all the doctors there) is much more consultative. I am careful to couch as much as I can as a question.
I simply flatly refused statins. To me the side effects outweigh potential benefits. You can refuse any treatment. Sadly they can also refuse the treatment of your choice.
I totally agree. Sadly, or not, until my thyroid started eating itself, I’d had little cause to darken the doors of a surgery for any reason, other than taking my kids as they acquired various ailments. My thyroid issues (although I’d been saying to the doctor for about 5 years that I had a problem, as my mum had the same condition) were finally acknowledged literally days before the first lockdown, so naturally I didn’t see a GP for a couple of years. In fact, until this current round of discussions, brought about by my very high cholesterol reading, I had never clapped eyes on a GP in relation to my thyroid issues since starting treatment. I have had blood tests, done by a nurse, checked results myself online, and had levo delivered every time I’ve needed a new prescription but, as I pointed out to the doctor I saw eye to eye, I could have presented at the surgery clinically obese and with a goitre the size of a football for all they knew about how it was going.
This time, I’m going in full Arnold Schwarzenegger….
no…that was the new login. There appears to have been a problem with me logging in on my mobile phone, so I created a new account, and suddenly realised that in fact on my tablet, my old login (croixblanches) works automatically. Can I remove the Enzo123 login, or can someone else do it for me? I only realised when I looked on the Enzo123 account and saw that I hadn’t made any posts. I hadn’t even noticed the posts I *had* made had been posted as Croixblanches.
I can’t understand why your GP is keeping you on 50……I typed that and the remembered I was kept on 50 for ages, too!
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
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.
I’ve been on 50 since 3 months in:they started me on 25! You’ve just quoted the bit I’d seen previously about the primary target being “to make the patient feel well”. I keep saying I don’t, and I keep getting the old “within range” mantra.
I did say to Dr Adrian Mole that saying I’m within range is a bit like saying I must be healthy as I’m 5’7”, but he couldn’t join those dots.
Absolutely, you're fine, you're within range, I'm sick if hearing it, from people on here and reading tons of stuff, I really feel I have low t3 due to poor conversion, but they won't entertain it, I'm guessing because the answer isn't on their big pharma list of drugs. Yes, I am bitter. Its been 24 years of this crap.
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