Hi, I'm new here 👋 I posted on another forum and was kindly pointed in this direction. So...
I've had various symptoms over the past 3-4 years, that have gradually worsened.
Low mood/depression - i was on 150mg sertraline but found i was still frequently feeling very low so decided to come off it earlier this year. I feel the same now as I did on sertraline.
Weight gain - I've always had to watch what I eat, but that no longer works. In 3 years I've gone from a 10-12 to a 16-18. It is mostly round my middle. Previously, if I gained weight on holiday, I could have a concerted effort for a few weeks and it would drop off. Now, restricting calories and being more active does nothing.
Fatigue and weak muscles- walking often feels like I'm walking through treacle. I put off going to toilet because the thought of walking upstairs is too much. I also get very short of breath now.
Heavy Irregular periods - I've had a private scan that showed nothing other than one largish fibroid. The private online gp said if I was a physical patient in her surgery, she'd suggest getting my thyroid checked. My mother also has an underactive thyroid and i have another autoimmune condition that makes me more susceptible to having thyroid problems.
Unfortunately my private medical insurance doesn't cover this. It is so hard to get a gp appointment, I ordered a full thyroid check on medichecks. Results came back as underactive thyroid:
TSH - 9.1 (0.27 - 4.2)
Free T3 4.4 (3.1 - 6.8)
Free thyroxine 10.2 (12 - 22)
Excellent, I think, a reason for how I've been feeling.
My gp won't accept medicheck results (fair enough) so I wait 4 weeks for a blood test. Phone for results yesterday to be told by receptionist "gp says these results are borderline and suggests re testing in 3 months" I ask what my results are, and they're completely different to medichecks results (would testing at different times of day affect the result, ie first thing in the morning, fasted for medichecks vs late afternoon after lunch for GP?) I'm going to ask for a print out of my results but she said it came back as TSH of 5.1 and free T4 of 11. So radically different to memedicheck. I'm unsure if the recommended ranges are the same as medichecks, but the gp considers my results borderline.
I said to receptionist I'm feeling dreadful. I can't wait 3 months. She has booked me a telephone appointment to discuss with gp... on 8th August. That's the first appointment.
I feel so deflated. Any words of wisdom? I have to assume the NHS test is more accurate than medichecks, so do you think my latest results are too borderline to see any benefit from treatment? I just feel so terrible. The idea that there might be a reason and a treatment felt like a glimmer of hope, I'm gutted 😔
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PamelaD00ve
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Your results are not completely different, fT4 is similar and TSH can jump around a bit. TSH is lower in the afternoon but this wouldn't explain all the difference. From your point of view it is better to have the blood taken in the morning, it will give a higher TSH result. The NHS test is not more accurate, often the NHS use the same labs.
I would contact the surgery again and ask for the reference intervals for the blood test results (the numbers in brackets). Make sure you get these, don't be put off. They can't say the results are borderline without the reference. Get these before you speak to the doctor.
Your results are not borderline, they show an elevated TSH and low fT4 clearly indicating primary hypothyroidism (a failing thyroid gland). More important are your signs and symptoms, a diagnosis can be made on these. Tell your doctor you are showing clear signs and symptoms of hypothyroidism backed up by the biochemistry, it would be reckless to delay treatment. ('reckless' carries legal weight so may wake them up). If you don't get anywhere ask for an urgent endocrinologist referral (it doesn't need to be urgent but you want some action).
A lot of NHS resources are wasted investigating and treating disorders that are essentially due to hypothyroidism. I would wean yourself off Setraline - I don't have knowledge in this area so take advice on how to come off. If you get grief from the GP point out it is unethical to prescribe setraline when hypothyroidism is indicated.
If your GP prescribes levothyroxine make sure it is at least 50 mcg daily. Current thinking is to start people (not elderly or cardiac patients) on 100 mcg and adjust. Sometimes doctors who are reluctant prescribe 25 mcg knowing it will be too little to be effective.
If you don't get anywhere insist on a second opinion.
Thank you. That is all really helpful and I've saved what you've said for when I speak to the gp.
I already weaned myself of sertraline earlier this year as it seemed crazy to be suffering side effects of medication that wasn't helping my depression. When I spoke to my gp to say I still feel depressed, she suggested going back on sertraline... but 50mg, instead of the 150mg that didn't work! When I pointed this out, she said "try it for a year and then we will see". She does seem very reluctant to ever prescribe or treat anything unfortunately.
Maybe she should try coming off her salary for a year.
There’s a lot of sexism against female thyroid patients. They get “DMO” - told they are depressed, menopausal or overweight. Female doctors are worse at this than male doctors, although it is a close race.
Your thyroid can produce less hormones (so your pituitary produces more TSH) for any number of reasons, some of which are transitory, short term, corrects on its own.
As a result, your GP needs to know that your thyroid isn’t going to start working again on its own. So after your first blood test showing it’s underactive, the current guidelines say to wait for 3 months and repeat the test. If it is still underactive then your GP should start you with levothyroxine. It’s a long slow process.
Unfortunately this long slow process is coupled with us being reluctant to go to the doc in the first place as ‘it’s probably nothing’, and ‘I’ll wait and see if I feel better in a couple of days/week/month’, so we’re pretty far down the line when we do eventually get round to getting tested; that extra 3 month wait then feels like torture (I know it’s not transitory coz I felt like this for 3+ months before I came to you).
So hang in there. However, while you’re hanging in there, read here, learn about hypothyroidism, and be ready to ‘assist’ your GP in the treating of your condition.
And then by the time you get there you are a blathering idiot because of the overwhelming importance of communicating the necessary! When oh when can we speak to properly trained physicians?
The beauty of Telecons 😉I get all my notes, all my paperwork, all my references spread out over a very large table and then I’m at them! There is nowhere for a GP to hide when I’ve got all my references to hand.
It would of course not look so effective if I was there shuffling through bits of paper actually in the consulting room! LOL!
That is simple and brilliant. Even when I have sent a letter prior to my appointment with my rationed ONE issue, you are correct, I am shuffling through my bits of paper and the GP still manages to obfuscate my agenda. Luckily my next appointment is a tele-con. Thanks to your advice I will be prepared to try again.
Many of us had a very windy route to diagnosis. I know you are feeling rotten and that knowing this won’t make you feel better, but do keep persisting and keep attending your appointments well-prepared. You will get there.
And if you feel the brushing off from the GP is going to go on and on, go to your next appointment with a friend / partner who can also advocate for you / just be a witness and take a note so you can remember what was said.
Those antibody tests and morning TSH tests are definitely what you need.
Sorry to hear of your frustrations. I was tested every 3 months over the course of 18 months as borderline under active. My late Father was also diagnosed at the same age. I am also going through the menopause which has similar symptoms. My GP last year refused to start treatment as I was borderline however quarterly testing continued. My symptoms gradually worsened so I contacted my practice and was seen by a different GP who was more sympathetic and had done some considerable research based on my results. Yes your test results can differ each time but please persevere with this and maybe ask to seek a second opinion on your results. I understand the healthcare differs in the US and we are lucky we have the NHS here in the UK. I hope you receive the treatment you need soon. 🤞🏻
Sorry to hear about your doctor being so intransigent (that’s the polite version). You’ve had some excellent advice already. Additionally, I’d suggest you familiarise yourself with the Nice guidelines on hypothyroidism before speaking to your GP and be ready to quote them in support of your points where relevant.
Did you have vitamins tested when you had your medichecks test - Vit D, B12, folate, ferritin? Those are often low in hypothyroid people. If they are low, you could at least start rectifying the levels in the meantime which would have quite an effect on how you’re feeling (though if your B12 is anywhere near the bottom of the range, I’d suggest holding off on supplementing that and asking for advice either here or at Pernicious Anaemia community on healthunlocked; it’s quite common to have PA along with hypothyroidism, and your GP will need to see low levels in order to get you on a lifelong treatment plan).
Edited to add: vitamins / ferritin just being within the reference range aren’t good enough. People here will be able to help with optimal values.
I will check my vitamin levels with medichecks, although I seriously think my GP will take any notice of any abnormalities tbh.
I've collected my NHS result print out and, according to their ranges, my T4 is fine and TSH only raised by 0.1. Which is why they're saying borderline. I don't understand why the NHS range is so much wider than medichecks and what I have read online.
The only reason GPs don’t like private tests is their complete ignorance and ability to interpret data- ie, your blood tests.
I had very similar results to you when I began levothyroxine. I had issues with depression and anxiety and had been on a form of anti anxiety/depression medication. Looking back over 10 years I had issues and symptoms that collectively added up to having been hypothyroid long before my ‘official’ diagnosis. If you click on my face it will take you to my profile and you can read the strategies I used to get medicated. My profile both tells the story and tells the method. You can also see other posts I’ve put out😊👍
Don’t humour them (GPs) enlist them to get you on the correct dose - symptom free.
If you read NHS guidelines on treatment of the thyroid there is plenty of ammunition there as most GPs are not up to date.
Read the other lived experience on here. I’m on here reading, if not contributing every week. It builds up a subconscious understanding of the issues (you don’t realise how much you learn from this). Read a good book on thyroid. My ‘go to’ was Be your own thyroid advocate, but others recommend a book by Dr Peatfield who was a god of the thyroid.
Then build up to the odd paper. Loads shared on here and you can read the discussions to get to grips with the content.
It’s all worth it. Especially when you realise you know more than the GP and even more hilarious when they realise it. I’ve just had my review date put from September 2021 which I ignored to September 2023. They know if I’m not asking I’m not needing and they just keep writing the scripts for a quiet life. 😊👍❤️
I’m a relative newbie, but it gives you an idea of what I’ve been able to do with the advice help and support of the wonderful people on here with years of lived experience. Do take the advice above and especially about conditions for blood test and vitamin deficiencies. GPs are not experts in everything and some actually acknowledge that gods bless ‘em but the majority try to command from a place of ignorance. You are the boss of your own health. They are not. They are there to support. 😊👍
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