Hi, just want some confirmation that I'm not going mad please and also how to tackle this...My Dr dismissed my symptoms and private blood test in 2017. I finally plucked up courage and went back to a different Dr this Jan after another private blood test. GP then did his own bloods and agreed to put me on 25mg Levothyroxine. I really haven't felt any different with this and my mood has definitely declined. My family are noticing. I've just done another Medicheck test:
TSH 15.39
Free T3 3.2
Free T4 13.1
Thyroidglobulin 701.6
Thyroid peroxidase 246.6
What are your thoughts? Thoughts of begging the Dr again to take me seriously is sending me into a panic. How should I deal with it? Thank you
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Alison100
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Please can you add ranges (ranges vary between labs)
Thyroid treatment can be extremely poor. You are not alone, many are untreated / under replaced.
Learn about thyroid, testing & correct treatment & advocate for optimal treatment.
15 is an extremely high TSH. 25mcg is half the normal 50mcg starter dose. Do you know why a low starting dose was given?
After commencing or adjusting dose you need a test and likely increases by 25mcg per day. This should be at a 6-8 weekly pace. Has this not been followed up?
Initially doses “top up” thyroid levels but then replacement - replaces what struggling thyroid cant produce. You are now well overdue an increase. TSH must be under 2 most need under 1 to feel well. FT4 in top 3rd of range FT3 at least top half.
Thank you for replying. Dr started me on 25mg as he said I was borderline..my TSH was 6.something then though. I've had no follow up since then, hence me doing another private test. Here are the rangesTSH 15.39 (range 0.27-4.2)
RE follow up ~ you should have had a repeat blood test 6-8 weeks after starting on levo . ( or 3 months at the absolute most )
contact GP now and let them knopw your TSh is 15 , they should arrange a blood test of their own and then increase your dose straight away to 50mcg .
Don't feel nervous about asking to see them about this as a matter of urgency , TSH of 15 is pretty terrible and they really should have arranged a follow up blood test for you when you started .. leaving you on 25mcg since january with no mention of the need for a retest to adjust dose correctly was pretty negligent of them.
When you have NHS thyroid blood tests .. get an early a.m appointment and don't take that days levo dose until after the test.
your not making a fuss about nothing. they have let you done badly by leaving you like this .
Lots of GPs consider TSH above range but under 10 borderline, but often completely incorrect as FT4 & FT3 dictate symptoms.
You also have positive TPO & TG antibodies - this confirms you have autoimmune thyroiditis (known as Hashimoto’s) doctors just refer to under active thyroid. So as your immune system is attacking your thyroid and causing gradual damage - it’s inevitable you level will decline further.
25mcg highly unlikely to be sufficient. Doctor either has no understanding of thyroid or mistakenly failed to schedule follow up.
Be prepared to track your own results and chase up your results & repeat test. Doctors either “forget” or leave for an extra few weeks.
Request increase now & repeat test in 6 weeks. You may be able to arrange via message / telephone. As waiting for appointment, further blood & minimum 6 weeks on unchanged dose for next test is going to delay progress.
Doctors often dismiss private results, but you can say how your symptoms are very severe.
An approximate full dose is 1.6mcg levo per 1kg of body weight. eg you may expect to increase every 2 months until you reach full dose.
Have you tested key nutrients? Folate, ferritin, B12 & Vitamin D. Often low with hypothyroidism, likely as low stomach acid common, & this reduces absorption. Unless nutrient levels optimal it can mean Levo doesn’t work well (and FT3 remains low)
Gluten issues common with thyroid issues. This can cause stomach issues. Testing for allergy might be worth while. This needs to be done while on a gluten diet. Although an intolerance would not be detected. Trialling strictly gluten free diet to see if improvement next step.
I remind myself of things to remember for blood tests with this checklist
A - Always check what’s being tested & collect test results with reference range.
B - Biotin - cease 3 days before draw to avoid possible test interference
C - Consistent unchanged dose - minimum 6 weeks previously.
D - Delay replacement dose on day of test (until after blood draw)
E - Early morning appointment. (Book draw as close to 09.00 as possible)
F - Fast overnight. This can have a slight impact. Drink lots of water
My experience is that it's up to the patient to arrange the blood tests. The GP should have explained this to you and obviously didn't. To arrange a test I phone the receptionist and say either that I had a change of dose six weeks ago and need to arrange a test or that it's time for my six monthly test and the receptionist just looks on my records and books me in. They won't phone you to arrange it. If you hate trying to talk to the doctor, take someone with you to boost your confidence (and help with your memory with a TSH of 15).
I find the same, doctors / practice staff used to automatically add recall dates on system, but now they don’t call. I have to contact them and say it’s due.
I was contacted once & was to be told I was due an important blood test. This was a week or so after having thyroid & glucose checked so I said I wasn’t due a test yet, what was it for? Cholesterol…apparently it was urgent, & they weren’t too happy when I said I’ll have it with next test in a few months time.
Just to say I was borderline 4.6 by gp range with many symptoms and thought I was going mad but when finally saw Endocrinologist they advocate you to be 2 or under. GPS aren't trained anyway mostly
yes it's awful I found it quite insulting tbh. I hadn't been to the docs for 13 yrs before it started at menopause for me , I'm still Tsh 3.4 I'm still a poor comvertor. But they realised I'd become quite "informed" so to speak. The diagnosis changed to chronic fatigue out of the blue. Sad
I have no one to ask as the endo wrote there is only one hormone available!! This after I had asked for t3 testing a few times and then I was offered a trial but he then wrote it was not,available anymore on nhs but I could buy it at his private clinic, 460 a month !!!!
So I bought t3 on line sadly I haven't had good results I feel not,too bad when my vits are tip top. Then I plummet at times. Diet lack of exercise or stress seem to affect quite a lot, I've just had hip,op and very tired. But I cancelled first op as my children noted I wasn't fit enough to recoup from op, however I'm through it now. (Albeit my leg is very shorter )
I don't know when you were refused T3 but I think a few years ago the NHS clamped down on it because of the expense. Then the producers were fined millions of pounds for profiteering and the price went down which might mean it is more accessible now. Sounds like you have had a lot to deal with and all this 'fighting' for things takes energy which we often don't have when we are undermedicated. Hope things improve for you soon.
yes I have felt u nhelped sadly my letter of feb this year from Endo says there is 'only one hormone ' and he's written to my gp to dismiss me from clinic. No words my TSH fluctuated 3 to 4..5. It went to 7 when on hrt but had to stop that due to operation recently ( altho i find that really outdated tbh)
You have a right to feel insulted. It was insulting and I'm surprised they changed diagnosis to chronic fatigue? What did they base it on? Are you in agreement?
no not at all. I still have symptoms and no stress as not working which was sometimes stressful There was no appointment for 21/2 yrs either as they cancelled it every six months No win situation as it goes
So sorry to hear of your experience. Sadly not uncommon; and I sympathise, I feel very wary of doctors now. Just to reiterate what others have said, my OH is treated through our local surgery and it's very DIY, he had to read his own test results to find the note that a folow up apointment was needed, this resulted in treatment but he had also then to request follow up testing and GP apointment to discuss results; lucky he'd been reading my books! It's all wrong but please do summon up the courage and get onto them again. When my memory was really bad I found it helpful to list my symptoms, changes and anything else I wanted to discuss or raise, in advance. Best of luck
Your results need immediate attention and follow up - and totally validate whatever symptoms you are suffering :
Your TSH needs to be down under 2 and towards the bottom of the range :
Your T3 is just 1 digit into a range of 37 digits and needs to be at least around mid 5's.
Your T4 is just 1 digit in a range of 12 digits and needs to be towards the top end at around 20.
All this will happen as your dose of T4 - Levothyroxine is slowly increased by 25 mcg increases every 6-8 weeks after follow up blood tests have been run.
Your thyroid antibodies are over range and this is indicative of your dealing with Hashimoto's - an auto immune thyroid disease.
You might like to read further around this and many forum members follow the research and recommendations found on the following website - thyroidpharmacist.com
It is also recommended to look at ' healing the gut as you body maybe struggling with certain foods, such as gluten, dairy, wheat.
Do you have an inflammation reading there ( Crp ) ?
Do you have readings/ ranges there for ferritin, folate, B12 and vitamin D as these also need to be measured through a blood test - as these are your core strength vitamins and minerals and if not maintained at optimal levels simply compound your health issues further.
You should also ask the doctor to run a celiac blood test as this is another AI disease that tends to run alongside those dealing with Hashimoto's AI thyroid disease.
You are not going mad - the thyroid is a major gland and the symptoms are diverse, challenging and very confusing - but there is help here, and I hope your doctor has some understanding and puts a treatment plan in place for you.
Just remember you need an early morning blood draw appointment - no later than 9 AM and do not take your daily T4 medication until after the blood draw so we see what your body is holding and not measuring what you have just taken.
Stop any supplements around a week before the blood draw so again, we see what your body is holding rather than what you've just been taken.
Always take your thyroid medication with a full glass of water and you should take it on an empty stomach and leave a good hour before you eat or drink anything.
I remember when I first found Healthunlocked I knew it was very relevant to me but I was in such a bad way that I couldn't take in what I was reading In the end I cut and pasted anything that seemed important and read it slowly when I was up to it. About five years before this I had written a book which was quite a heavy weight history book whilst working as an academic researcher. When I went to tough it out with my GP I took my book and used it to underline how things had changed cognitively speaking. He took me seriously after that... and also bought a copy of my book!
In order to understand I wrote out everything several times and read it all out to myself - over and over again - I am dyslexic and when very poorly this was the only way I remembered anything - like being kept in at school and having to write lines.
I got through 4 lined exercise books - but my doctor took no notice and offered me the ' deemed obligatory ' option of anti depressants that didn't work anyway and then I was referred to as a conundrum and she was the thyroid lead in a group practise.
I now self medicate having been refused any treatment option to T4 monotherapy and am with Graves post RAI thyroid ablation in 2005.
It all depends on which ICB/CCG are you are in as nowadays doctor seem pretty much powerless , let alone not have the knowledge to challenge ridiculous guidelines.
You can check out your surgery and ICB area as to prescriptions of Liothyronine and put Armour in as the drug if looking at Natural Desiccated Thyroid on the NHS.
You have been treated very badly. It’s unfortunately very common. Everybody on the forum has a tale to tell. Some of us have been let down many times. It’s exhausting to consider but you are your own best advocate with the help of the forum. There is a lot of knowledge and experience here. Use it and get your way forward worked out. Best wishes.
Rest assured that your low mood, lack of energy and foggy mind are all a direct result of being under medicated. Nobody can do much when their levels are as low as yours are just now. I had years of it before I got the right dose. You need to fight for help or it will drag on because this illness does not create an ‘emergency’ that gets medical attention but it does make life impossible for you.
Until your levels are in range (TSH under 1.0 and T3 and T4 high in the range) you are unlikely to be able to function properly, so push hard for doubling your dose to 50mcg Thyroxine now and then test 6 weeks later and get another increase in dose and keep doing that until you are in range (TSH at 1 or less and T4/T3 in top 25% of range). Only then will you know how well the treatment is working and hopefully be feeling much better and thinking more clearly.
It takes a while to get it right but you do have to push. It’s not fair on your family for you to be struggling so much when it can be fixed.
Hope that helps! Meantime don’t try to do too much and accept that you are not well rather than struggling every day to do more than your body can deliver. I used to set myself simple realistic targets each day that I knew I could achieve and that helped my feel better and more purposeful. Otherwise we are disappointed each day we couldn’t do everything we wanted to and that makes our mood/feelings worse. Low TSH makes us feel ‘down’. Managing your mental health is important through the stage you are at. Explain it to your nearest and dearest so they can support you. (Maybe get them to talk to any of us so we can can explain to them how it feels to be under medicated with thyroid.).
Not at all sure about that bit but otherwise agree, especially about mental health at this stage. It would be good to understand this from the off. It could save a lot of angst. Another glaring omission from the GPs absent box of tricks.
the reason you’re feeling miserable and like you’re going mad is because you’re under medicated and very hypothyroid. Someone on here once told me when you start on 25mcg it can make the thyroid give up entirely and it kinda looks that way. You’ll feel a lot better once on the right dose. But it takes weeks not days. Your doc will plainly see you need a dose increase (they may ask you to do nhs test and not rely on your private ones but result will be similar). Make sure you ask for a retest in 6-8 weeks so you can get another increase if required.
it's slow and steady progress each six week tests to up dose by 25mg until you reach sweet spot as they have called it, your t4 converts to T3 and this is the one that makes you feel well
I am a poor converter to t3 but raising vit D and b12 really helped my energy and wellbeing. You will hear the importance of good levels of D, folate B12 and ferritin. All about a healthy balance. B complex very good for nervous system
As far as I am aware this is never explained to any patients. All part of ‘get patients out of the door asap’. They have no idea (or care) that the patient might benefit from this info from the off. But then they might need to explain or respond to more questions. No it’s a very very poor service which treats us all like morons. It’s just basically shockingly awful treatment. Medics appear to live in a rather isolated environment. I naively thought such ‘clever’ people would be more worldly, more knowledgable, more wise. When we become unable to work because of the negligent handling of our health, they never seem to be able to think that most (if not all of us) were contributing to the economy (which pays their wages) and that the NHS itself also suffers as a result of this total absence of care. Their ignorance and attitude is costing individuals dear and also the country. Apologies for the rant.
I am listening to the Webinar today from ThyroidUK. I am impressed by the knowledge of the first guest speaker. However dare I say, I find the advice (boiled down for us) on the forum by experienced forumites is extremely helpful and extremely useful. What I am impressed with so far is the ‘medical speak’ about genes and their effects on thyroid issues and why they can be mitigated. It’s not a cure but in some cases the research has been proven to be helpful. Honestly I just can’t imagine your average GP reading up on all this, like we do. No it’s very disappointing that GPs do not know where the dots are never mind actually join them up.
but don’t quite me in that - have a good search of posts and see what the admins say! But yes it makes sense. I was started on 25 and finished up on 100 and25 lio.
I wasn't on this forum when I was finally diagnosed. Like others and yourself, I was treated badly, but I was told at the start that I would start on 25mcg and would be retested and the dose possibly (🙄) increased. I found that with each dose increase, I felt better for about a week or so, and then it dropped back. Like you, I felt like I was going mad. They stopped the increases at 150mcg as blood tests were 'normal'. Then I lucked out bigtime as I saw a very old fashioned GP who said 'but how do you feel?' and put it up to 175. That was my sweet spot at the time, that extra 25mcg made all the difference, and I was great on it for years. The advice you have got on here will help you so much, particularly at the moment regarding blood tests following the A-F tips from PurpleNails. Really hope your journey to feeling better goes smoothly!
Alison you're not going mad you are hypothyroid according to the tsh results that is the result the doctors always go by. 25 thyroxine is only a starter dose and you will likely need more after 6 weekly tests. You must have symptoms and you will feel below par, I can remember feeling so tired I could barely function and had weird random pains throughout my body apart from swelling up like the michelin man! I hope you get adequate treatment soon and feel better, at least by knowing you are being listened to.
unbelievable!!! I’m glad you’ve come here! Lots of lovely people with sound advice for you. I hope your GP listens and does what he should have done ages ago. You are not going mad! Big hug - hope you get sorted and feel better soon!!
Update: the only time I could get for blood test at the GP surgery was 11.40am and the TSH result was 7.87 (quite a big difference from my Medicheck test that I did on waking..15.39). I've just had a remote consultation this morning, via the Livi App. The GP has reluctantly agreed to increase my dose to 50mcg. He gave me a bit of a talking to about getting a private test, said they are unreliable etc and said he will order a full blood test, which I have to book for 4 weeks time. He said my symptoms could just be due to perimenopause/menopause. I told him I've had these symptoms since I was a teenager and my last period was 8 years ago. Anyway, at least it's been increased, so it's a start. Thank you for all your help!
You got a private blood test as the NHS routinely do not run a TSH, Free T3 and Free T4 - and private blood tests are no less nor no more reliable than any laboratory test anywhere.
What bloods is the surgery running in 4 weeks time ?
Once on the increased dose of T4 for around 6 - 8 weeks you will need a follow up blood test again - though you may not get a TSH, T3and T4 unless the doctor instructs the laboratory and the Lab agrees :
Start a new post with new information - and post anything you need explaining from whatever is tested by your doctor in 4 weeks time - hopefully s/he is including the core strength vitamins and minerals, ferritin, folate, B12 and vitamin D so just stop any of these supplements so we can see exactly what your body is hanging on to.
Thanks Pennyannie, he's wanting to test cholesterol, TSH and iron, I believe. Not sure what else. Yes, I'll start a new post when I get the results. Thanks for that tip. I'll get my own test re D and B12 etc hopefully soon too, if that is not inc in the test. It's funny (not funny really) but he said to me "I get the feeling you don't trust doctors. What would need to happen for you to trust?" I said "a start would be to listen and not just invalidate what I'm saying"
It can be a difficult situation as your needs clearly have not been met :
S/he probably knows this and so trying to make amends by running all these tests instead of focusing on the obvious :
If you can get your ferritin , folate, B12 and vitamin D that would be very useful :
And if you can't get a TSH, Free T3 and Free T4 this is a much cheaper option privately and just a finger prick test and then between all of the tests we may have all we need to help advise you better.
Well done for standing your ground- i know, i'e been there, and it is not easy and doesn't come naturally to many of us.
Yes I am a lot better now - but a work in progress as we all are - all we can do is try and become our own best advocates and learn what we need and go about getting it.
When T3 is so low - cholesterol tends to be high as you are not able to metabolise your food well - this can right itself once optimally medicated.
It is another known hypothyroid symptom - and you do not need to take the statins as the body can right itself once we find your optimal level of thyroid hormone replacement.
Glad to hear that you are feeling better. Yes, a work in progress is a good way of putting it lol. I won't be taking statins whatever the outcome. Unfortunately Drs seem fixated on them.
I am right there with you. I was diagnosed many years and now see that other than a little while on NatureThroid in 2017, I have never been at a dose that I felt really good. I started all over with a new endo this past winter and although he is helping, he is still quite conservative in his approach, so I have to push a lot.
I am finishing up 4 weeks on 75mcg tomorrow. I am also on 5mcg T3. The last 3 days I thought I had turned a corner, but today I had terrible brain fog, a meltdown, and felt overwhelmed. It is so frustrating after a few much better days. I hope today was a fluke and tomorrow is better again. On Friday, I even drove an hour away to Indianapolis, which is a big city and lots of traffic and had zero issues. Ugh!
I have the paperwork to have my levels done in 2 weeks. I hope I either feel much better by then or my endo is willing to increase my dose.
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Dosage advise, current labs and miserable.
Normal results making me miserable
Feeling a bit dismissed - Thyroid
