How does your surgery keep an eye on hypothyroidism?

[lostatsea999]

Hello,

How does your surgery keep an eye on/monitor hypothyroidism?

I've had an under active thyroid since child hood, blew up badly in weight with early periods, fully on levo/thyroxine since it was stumbled on when in hospital with grumbling appendix. Saw someone hospital wise monitoring until my teens.

Just lately in my 40's looking after this condition has been terrible at surgery level. I have to fight GP's every year it is becoming time to run blood tests when as a child I kind of remember it said back then this would be the worst period for the condition? I don't understand my GP's stance of not monitoring it yet they can diabetes when you are diet only for that. It used to be part of diabetic review but over the last few years it gets missed off any blood review.

I've put on weight in a short time period, notice I get a hoarsy voice so callers in my job accuse me of having a cold if they speak to me at wrong time of day, I get cold easily, I just find it crazy the one condition that renders me eligibility for a medical exemption card and it is more and more turning into a battle every year.

Sorry for the moan.

I get a blood test every 6 months and then my meds altered if need be. If I feel my levels are off and ask for a blood test it can be a bit of a fight but I usually get one

Just a six-monthly blood test. My thyroid was removed when I was a toddler. Levels have been a bit awry since peri and were mental when I was pregnant. That's all the monitoring I get.

I’m recently diagnosed and was given no information from my surgery, what I’ve found out about the condition is what I’ve found out from the thyroid UK website. I requested an appointment with a GP to discuss my symptoms as I’m still struggling with some of them, she wasn’t massively helpful but did send me another blood test there and then, which showed my TSH levels are now normal but I’m vitamin D deficient so some meds for that. But I had to ask for my vitamin levels to be checked, I’ve had to ask how often I need blood tests, still waiting to hear. My surgery is a bit shit though.

Thanks and I am sorry, I was a little girl in 1991 just got handled a brown bottle of pills and that was it. It wasn't until my Mum was chased to collect another bottle it became said it was for life.

Desperately trying to remember what use to happen as a young adult before the diabetes.

I'm lucky if they test once a year and last time I saw I'd wasted an appointment when all I really wanted was a blood test form (my second time of asking) when the GP just didn't want to treat a UTI so I thought I may as well make the apt count, it came back then the thyroid was out, they adjusted the dose checked me 2 months later then back to the usual standards. I reckon I've prob left it to long to change surgery. Maybe they are all as bad as each other.

I get a blood test once a year if I nag them for it.

This year I had to have a medication review with a pharmacy who wanted to reduce my dose of levothyroxine as my TSH had risen. I did an excellent job at remaining calm while explaining that she couldn’t be more wrong and under no circumstances was I reducing my dose 🤦🏻‍♀️

The only help I get from my surgery is if I ask for it. Granted they'll do blood tests if requested but proactively? 😄

I get a message from my GP surgery (old one and new one as recently moved), every year, to remind me to book an appointment for blood tests to check the level. (North East)

I get a blood test every 6 months, levels have been good for a few years now. I was diagnosed in my early 30’s

also hypo, from birth so congenital hypothyroidism I have no thyroid. My levels have always been somewhat up and down and I’ve needed fairly large doses of thyroxine and still felt crap. Not that drs really care tbh as long as my numbers are ‘ok’ that’s it really. I get tested yearly, more if I’m off I think peri has thrown things off as I’m all over the place just now, and completely exhausted. My gp seems nice an understanding she referred to endocrinologist as was worried about how crap I always feel. They fobbed her off - take tablets at night - I do I’ve to re test in 8 weeks on 275mcg so we shall see but resigned to feeling crap, it’s not great but I give up

I’m on 100mcg of levothroxine daily and have a blood test every 12 months. They’ve not changed my dosage for years.

Watching with keen interest - also hypothyroid and was diagnosed postnatally but also runs in the family - thyroid seems to have gone haywire last few months and landed me in A&E as couldn’t work out what was wrong! Handed back over to GP but can’t even get a full thyroid panel with them - just T4 and TSH - they refuse to do T3 even though hospital advised full panel

My GP surgery gets round the issue by refusing to send you for additional blood tests to diagnose it. If your TSH is within 0.0000000000001% of the normal range, they refuse point blank to let you have any other tests, even if you have multiple obvious symptoms.

It seems to be their blanket policy - if they don't diagnose it, you don't get free prescriptions. (This was confirmed to me by a friend of DH's who happens to be a pharmacist).

One of these days I think I'm going to have to pay for private blood tests.

Why would a gp care if someone gets free prescriptions or not it doesn't effect them. Lots of people get free prescriptions for all sorts of reasons and a gp won't know who does or doesn't

A pharmacist told me. They would presumably know more than I do about it. 🙂

The pharmacist is talking out there arse. Think about it logically how would a gp know if your getting free prescriptions or not people on certain benefits get them unless your gp accesses your bank account which they can't they would have no clue about your financial situation and even if you told them you didn't pay for prescriptions why on earth would a gp care it doesn't effect them in the slightest.

I have an annual blood test and have done so since I had radioactive iodine treatment 30 years ago for Graves Disease.

If I were you, I think I would make an appointment and raise your concerns about how you feel now and ask them why they don't test your levels annually. You do have to be assertive sometimes with GP's and I would urge you to do so.

Your GP should call you for an annual blood test so that they can be sure you're on the right dose of thyroxine. If you still feel very unwell in the period between these blood tests you should see your doctor and they should agree an extra blood test as maybe your medication needs to be adjusted. You shouldn't wait until your annual blood test.

Annual bloods (tsh and t4, not t3) if I ask for them. That’s it! Never actually saw a doctor at the point of diagnosis as it was covid lockdown 1 so I had a phone appointment (in which I basically said, I’m so exhausted I think I might be dying) and they sent me for blood tests then prescribed levothyroxine straight away. Felt sorry for the phlebotomists who were obviously having to see people in real life when the GPs weren’t.

This I was diagnosed 15 years ago and get a blood test once a year. It isn’t enough I need a private script really as the nhs just gives you the minimum

It was a very long and very hard road to diagnosis for me, my symptoms eventually became so severe I lost function in every area. Couldn’t walk (could only push one foot in front of the other along the floor to get to the loo, next room etc), developed slurred speech (frightening), to the marrow exhaustion, cognitive disorientation - struggled to recognise where I was, what I was doing, couldn’t understand what others were saying. My memory and ability to focus dissolved. I was scared it was a form of early onset dementia. Couldn’t breathe when I lay down my airways closed, initially when sleeping but then progressed to anytime awake too, later found out lack of thyroid can relax the breathing muscles like this. Neck swelled up badly and I couldn’t turn my head, struggled to swallow. Heart rhythms went haywire, kidney function suffered (found later), skin became so dry it cracked and bled, my hair turned into matted felt, like dreadlocks. Eyes so dry they scratched and hurt. Developed fatty liver disease and gallstones (never had before) and constipation became severe. The number of times I went to my GP and the number of times I was sent away with nothing, it was honestly one of the most distressing periods of my life and I contemplated ending it. For the sake of my family I didn’t but it took me to the brink.
My GP was initially quite passive and disinterested, but later became aggressive with me and was openly dismissive. You could hear the anger in his voice (was always on the phone as this is their default rather than face to face appointments) and I was crying was so desperate and ill.

In the end, after researching myself what on earth might be going on I asked for thyroid testing which they did but had to be assertive in requesting full panel including the thyroid antibody test (TPO) which was a bit of a battle but agreed.
Then and only then, when my results came back and the antibodies were through the roof for Hashimoto’s was I taken seriously and prescribed Levothyroxine. An ultrasound showed extensive thyroid damage. My TSH actually wasn’t hugely out of range but my antibodies were sky high. I changed surgery after this as my GP was awful and my new surgery is wonderful. If you are having problems I would encourage you to switch surgery. I got a personal recommendation which helped my confidence with switching and so glad I did.
Getting blood tests when I request them now about once a year, no automatic booking or anything I have to book it in myself.

I would recommend - being assertive with full panel bloods including the thyroid antibody test TPO. If I hadn’t had the antibody test most likely my old surgery would have shrugged and said my TSH was elevated but probably have given me the brush off (again).

Has anyone had an ultrasound? Mine showed thyroid nodules but was told they weren’t at a ‘risky’ level for cancer, whatever that means. I was given no advice on when and if the nodules should be checked, but given how slack primary care has been all the way through this I am now thinking I should look into it.

Hi,

Well I have just had a medication review with an in house surgery pharmacist.

I was asked am I still on levothyroxine despite putting in monthly orders on the nhs app which they approve!

I asked them the question how does testing occur and that my past experience was it had just been added to the diabetic review - the response was well I don't know.

So been told to write a letter or email to the surgery, god it wouldn't surprise me if I end up ejected from this surgery at this rate. lol

Lets see what they come back with.

Looking online I saw some mention of annually but they can leave it 5 years if stable and under control? but then when I clicked thought it just takes me to an nhs page that say's to be careful we are on the right dose.