I continue to follow as many posts as I can reading for an hour and more every day and I’m learning so much from you all. I have a quickie. So, I didn’t actually mention this in my earlier posts I think I felt embarrassed for my doctor. She started me on 25 µg of levothyroxine when I was diagnosed in August and only upped the dose when my husband dragged me to the doctors for a face-to-face because I was feeling so down and so exhausted. He was really worried about me. So now I’m on 50 µg and after 10 days I started to feel an improvement. Just as if someone had replaced my fading batteries! For four weeks I felt good then I plateaued and now I feel like I’m dropping back although the sensation is not as extreme as it was in February.
I’m having a blood test next week, following all the protocols as advised on this forum early as possible in the morning, fasting bloods, dropped off the B vitamins 7 days ago and take Levothyroxine after blood taken.
Thankfully my GP has contacted the local Endo who has given her some advice which includes to expect to get my TSH to one or below which is a bonus. Is it possible that I can ask her if she can up my dose in larger increments or does the hashes mean I am stuck to 25 µg steps? We open our business again May 17 my husband and I run a guest house and the way I feel at the moment it is going to be a battle just to get past the breakfast let alone doing cleaning as well. I just need to get back to a level where I can function. We don’t have the luxury of a financial cushion to rest on whilst all this gets sorted out.
We open our business again May 17 my husband and I run a guest house and the way I feel at the moment it is going to be a battle just to get past the breakfasts let alone doing cleaning as well. I just need to get back to a level where I can function. We don’t have the luxury of a financial cushion to rest on whilst all this gets sorted out.
I would really appreciate some advice.
P.
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Charlie-Farley
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I will let the Experts on this fabulous forum answer you.
Like you, I have learnt so much on this community; it truly has been life-saving for me!
You are fortunate to have a supportive GP and a knowledgable Endo, so it sounds as though you are 'in good hands' (not forgetting your dear husband taking you to the doctor for a face to face consult...well done, for your hubby).
Keep asking questions, keep booking appointments with your Endo....you will start to feel like yourself again, and very soon.
Hi Charlie-Farley, I've looked at your page but you haven't given any background history of your journey to being diagnosed as hypothyroid. It makes it easier for members and you as you don't have to answer similar questions. You can copy/paste some of the above into it
Unless we are very frail with a heart condition, the normal starting dose of levo is 50mcg with 25mcg increments every six weeksfollowing a blood test until we feel well again with no clinical symptoms. Usually the TSH is 1 or lower and Free T4 and Free T3 in the upper part of the ranges. Unfortunatley the latter two (frees) aren't often tested. If an incremental dose was too high you wouldn't feel well.
Try not to worry but I know that isn't possible as both you and husband are running a business. Make sure you rest in between doing chores to try and maintain your metabolism.
Unfortunately, there's no way we can rush increasing doses.
I assume you know the method of getting your blood tested, i.e. the earliest blood draw, fasting (you can drink water) and allow a gap of 24hours between last dose of levo and test and take afterwards. This gives the best results.
Also request B12, Vit D, iron, ferritin and folate.
Your GP obviously doesn't have much experience of treating patients who have dysfunctional thyroid glands, so it's good she at least contacted an Endo for advice.
I hope you feel better soon. Also rest between your chores -even if for a short time - until you are on an optimum dose. Optimum means you feel well and wouldn't be aware you have hypothyroidism. Look on hypothyroidism as 'low energy' until you feel well again.
Thank you so much for the advice and yes I will fill in my story I hadn’t realised I needed to do that so thank you for pointing that out to me really appreciate it. Yes it’s a learning journey isn’t it?
We've all been there i.e. not understanding why we've been diagnosed and taking thyroid hormones and may be feeling worse than before we're diagnosed.
We get lots of support on this forum and especially when we're new members it comes as a surprise that the majority of doctors don't seem to know how best to improve our health.
Yes, it is a learning curve and it would be excellent if GPs and endocrinologists looked in and they, too, would also find it helpful and enable them to treat patients to feel well again and to be symptom-free. It is possible but sometimes that seems far away
even though it's time consuming ,(and makes work seem impossible!) there are benefits to doing it in 25mcg's, especially when you are getting close to the full dose which often ends up being anywhere between 75 and 125mcg's for many people. What you can do is make sure your repeat blood tests after a dose increase are done at 6/8 weeks, and make sure it's increased until TSH is around 1 or below.
For example, say your 'right dose' is actually 87.5mcg
If you insisted on going up from 50mcg to 100mcg, then what could happen is your next TSH could have fallen lower than GP is happy with and they panic and reduce you by too much again.
It's better to keep them on side, they don't like patients who push to take more than they need, and once they've given you that label you 'll have trouble getting the dose you need in future if they think you are increasing too fast to see the results properly.
If you made your TSH go low, it's possible it takes a while to wake up and rise again, and so get's in the way of them prescribing the right dose if they just look at TSH.
It's a shame they started you on just 25mcg though , that just wasted time unless there was a good reason for starting so low. Usually 50mcg is a good starting point and that would be increased after first 6/8 week blood test.
I'm the meantime try and ration/break up your physical work. Take frequent 15 minute breaks. Don't push it when you feel Ok. try and make you energy last the day. and pay attention to relaxation / good sleep habits.
Hopefully you will be about to get a 25mcg increase as a result of latest bloods. And hopefully you will feel a similar benefit to last time it was increased, and the 'drop off' after a few weeks will be less this time.
It is good that GP has been instructed by endo to get TSH to 1 ish, at least she asked for help .... better than some who arrogantly insist that TSH anywhere within range is good enough.
Thank you for the advice and yes I think you’re right I am lucky with my GP just because she’s not arrogant and she actually recognises when she needs to reach out and get more information and thankfully the Endo though I have not met him does seem to be giving good advice thus far. Keep your keep fingers crossed for me I may have the dream team! LOL! Even if they do need whipping into shape a little bit! LOL!
You might be right see... 'How to Train Your Dragon' (GP !)All the more reason to go slow and methodical, that way they'll never have excuse to call you 'overmedicated', as you'll have carefully trialled doses on the way up, so if by any unfortunate chance levo doesn't fully work for you , you'll be in the prefect position to get a referral to a hopefully switched on Endo , And they won't waste months telling you 'all that's wrong is you are taking too much levo... '
Here's hoping you're back to full steam bed changing abilities by the summer and full of guests who aren't allowed to go abroad
can you get an 'intern ' in the meantime ... i hear you don't have to pay them...LOL
Ah .. welcome to to the wonderful world of thyroid treatment. Now you know why so many of us sound so cynical and angry , and have to cheer ourselves up by laughing at Doctors... one day you'll be able to laugh at them to ... but probably not today . There's often quite a bit of anger to process first once you realise how it should/ could be done so much better than it is, and what impact the current omnishambles that passes for thyroid knowledge in GP's has had on your life.
Looking on the bright side .. it could have been much worse if you hadn't found your way here when you did...... you might still have been on just 25 / 50 in 2024.
Took me about 17 years to find my way here.. so you're doing better than me so far.
You are so right things could’ve been so much worse but it breaks my heart that so many people on this forum have lost so many years to something that could’ve been treated. It’s outrageous
For four weeks I felt good then I plateaued and now I feel like I’m dropping back although the sensation is not as extreme as it was in February.
This is a perfectly logical train of events. And, it's likely to happen with every increase until you get to the right dose. This feeling of symptoms creeping back is just your body telling you that it's ready for the next increase in dose.
25 mcg really is the maximum increase your body can tolerate. Increasing by more than that could cause more problems than it solves, and force you to decrease right back down again. So getting to your optimal dose would take more time, rather than less. It really is a question of more haste less speed, and won't make you feel better quicker, I'm afraid. Your body needs time to adapt to each increase, to process it and convert the T4 to T3. It's so easy to miss your sweet-spot if you increase too fast.
Hi, Yes I’m resigned to incremental increases to find the sweet spot, but it’s just sinking in-I’m a bit annoyed to put it mildly. For some strange reason my online records do not have my first blood test end of July 2020 which showed me to be borderline. The only test logged is the one that came back ‘normal’ - in September- that is it would’ve been normal had I not already been on 25 µg of levothyroxine! that they should’ve been aiming for a TSH of one or lower and had already had a test done in July! So currently it reads that I had a scan and then a normal result. One could be mistaken for thinking I was a bit of a hypochondriac just reading the records! I can cope with people having to play catch up with a situation, but by goodness me it does seem rather odd that that first blood test has never been recorded in my online records. I will be calling them on Monday to see if they would like a copy to register online. Needless to say they will not get my original!
This delay in treatment will mean that I have to come out of lockdown running a guesthouse with my hubby, while still hypo and struggle through the start of what may or may not be a season when really had they actually got there ‘you know what’ together I would probably be on a level by now. I’m not sure if this is just a clerical error. I think we will never know, but I’m feeling a little mistrustful at the moment, whether it be incompetence, Or deception.
Sorry, I don't follow you. What delay? Do you mean you think they should have started you on 50 rather than 25 mcg? If so, I agree with you. But, even if they had, what level do you think you ought to be on by now, and what makes you think that level would make you better? These are things we can't work out in advance. With hormones - all hormones - we have to start low and increase slowly, until our symptos are all gone. And, that can take a long, long time.
And, don't be deceived by that word 'normal'. It's meaningless. When a doctor says 'normal', all he means is 'in-range'. But, the ranges are so wide, for the most part, it cannot possibly be 'normal' all the way through. So, it is more important where the result falls, rather than just being any old where within the range. If you see what I mean.
I’ve just gained access to my online GP records today and my first blood test was never put online. My first blood test was in July 2020 and that was when she started me on 25 µg of levothyroxine. Looking at the records now without that first blood test registered online it looks like she did start me on 50 µg in February. Bit unusual don’t you think 🤔
I’m definitely dropping back having had an improvement and plateaued, so this could’ve happened a lot sooner had my records been complete surely.?
When my second test was done in September and there is ‘normal’ against both the measurements TSH and T4 - however that was not normal as I was already on 25 µg of levothyroxine, so by rights my GP should’ve been aiming to get my TSH on or below one, according to the local endocrinologist, and instead left me on 25 µg because she said I was normal😬. I’m just glad that I asked for a printed copy of that first blood test otherwise it would be very difficult to prove it had ever happened. I’ve just gone into the medication section and there is no mention of 25 µg of levothyroxine either!
Mention buried in consultations no figures. Mention is 25 µg of levothyroxine but it’s not recorded anywhere else. I’ve seen this sort of obfuscation before in other spheres of my life.
I don't think it's in the least unusual to find errors of that kind - and even worse! - in medical records. It happens all the time. I've never seen my GP records, but did get a glimpse of my hospital records during one stay, and it was a pure work of fiction!
I’m definitely dropping back having had an improvement and plateaued, so this could’ve happened a lot sooner had my records been complete surely.?
This is where I lose your train of reasoning. Why would it have happened sooner if your records had been complete? You can't test sooner than every six weeks. It takes at least that length of time for your body to assimilate and process the levo. So, no point in testing before that.
When my second test was done in September and there is ‘normal’ against both the measurements TSH and T4 - however that was not normal as I was already on 25 µg of levothyroxine,
No, no. That's not how it works. That's not what 'normal' means. As I said above, it just means 'in-range' whether you're on levo or not. But did you not get the actual numbers? Results and ranges? That's what you need, not just your doctors opinion. You should always ask the receptionist for a print-out after every blood test - it's your legal right to have one - and that will give you all the numbers.
so by rights my GP should’ve been aiming to get my TSH on or below one, according to the local endocrinologist, and instead left me on 25 µg because she said I was normal😬
Well, it's not really about the TSH. What you want is your FT4 and FT3 in the right place for you, and that automatically brings the TSH down. Your doctor should not be dosing by the TSH. But she obviously doesn't know very much about thyroid.
But, in any case, that would have happened whether your original test was recorded or not. That's what happens with ignorant doctors. Of course, she knew you were taking 25 mcg levo - I take it it was the same doctor that first gave you the levo? - and considered you didn't need any more because - presumably - your TSH was somewhere in-range. She was wrong, but it had nothing to do with the missing notes.
So, you did get a printed copy of your very first results! What were the numbers: results and ranges?
Your probably/definitely right on all points. GPs play around in specialist areas, stuff up AND then get advice - the tail is wagging the dog.
Timeline - 1st test back in July, 2nd test September then 3rd test - blue horizon with vitamins February this year.
She couldn’t understand the results from blue horizon 🙄. I think that may be the reason she asked an endocrinologist’s opinion 😱. Thank goodness I got the blue horizon test done.
Back in July last year first test
TSH was 5.117 range 0.57 to 3.6 mU/L
Free T4 8.4 pmol/L range 7.0 - 14.00 pmol/L
Ultimately I’m struck by the lack of information that these types of blood test provide initially. It would seem utterly logical to me to use such a test to monitor once a persons thyroid status had been established. However, when you consider that vitamin deficiency goes hand-in-hand with hypothyroidism and the profound effects that vitamin deficiencies can have on someone’s health, it seems false economy to actually not do a full panel as soon as possible and to establish a working strategy.
I’m angry enough that my treatment could’ve been dealt with so much better, but when I read everyone else’s stories I am absolutely incandescent.
Any such performance, or lack there off in any other sphere of society would be dealt with in a stringent and decisive way. I feel myself becoming an activist.
The information you wonderful people on this forum have provided me with, has probably already given me more knowledge than currently held by my GP. What a scary thought!
Thank you Grey Goose - hopefully I will be able, once I understand more about the thyroid, to do something useful. So wished I had trained in medicine after my degree in environmental science.
The holistic approach you learn in environmental science would be so useful in medicine. As it is I am only a doctor in biological science.
Hypothyroidism isn't necessarily a specialist area. It can be reasonably 'simple'. After all, plenty of hypo patients successfully self-treat. But, you do need to know the basics. And most GPs just don't. It's shocking. It's unbelievable how ignorant they are sometimes, but that's the way it is because that's the way Big Pharma wants it. And BP most certainly doesn't want doctors messing around with nutrients, because that might actually get the patient well and cost them money! So, whilst you're right on every point, things aren't likely to change whilst BP rules the roost.
Pretty certain you do already know more than your GP - she doesn't sound particularly bright. And, there are people on here who know a dare sight more than the majority of doctors because people on here have taken the time to study it. The majority of doctors haven't. They spend a rediculously short time on the endocrine system as a whole when in med school. So, you can imagine how little time is consecrated to the thyroid itself. They are taught that the TSH tells them all they need to know, and all they need to do to 'treat' a hypo patient is prescribe enough levo to get the TSH back down to somewhere in-range. They know nothing about the actual thyroid hormones, or the symptoms, or the connection with nutrients or the adrenals - just mentioning the adrenals to the average GP is enough to send them into a semi-coma. And, yet, despite all that, the average hypo patient actually manages to survive. To get better, even. Those that don't, end up on forums like this, and take to studying endocrinology with Dr Google, and get themselves well. But, it can take a hell of a lot of time - took me nearly ten years to find out which form of thyroid hormone, and how much, I needed, and I had to do it all by myself. Thank you so much, Big Pharma! But you won't be making any profit out of me!!!
If I understand correctly, Charlie-Farley had a blood test which showed hypothyroidism and was put on Levothyroxine. When the next test was done TSH was classified as "Normal". When Charlie-Farley checked her medical records the first test showing a hypothyroid result was not recorded in those records, only the first "Normal" result was there. So any proof of hypothyroidism prior to being prescribed Levo is missing from the records.
At least, that is what I understood the situation to be.
Exactomondo - there is a brief mention in another section - but could easily be missed. It’s uncharacteristic compared to all the rest of the records 🤔 no mention in medication section and no mention in tests section . It’s obfuscated - I’ve seen this type of thing before..... if found out it can be ‘put down’ to a clerical error.
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