New diagnosis - what to expect/demand from GP

[Whatdidyousay]

I had my second child in August 2022 and to be honest I've not felt right since. Since going back to work in June last year I've been permanently exhausted but it's just got worse and worse. Totally mental fog, can't focus, constantly yawning my head off. My body aches constantly but all the while I just thought I'm just tired because my son doesn't sleep.Tipping point was last couple months I've started piling on weight, I eat reasonably healthy and I've actually been getting back into exercise so it made no sense.

Anyway contacted GP (online consultation) and he referred me for bloods. Got those back Monday and had the GP ringing me at 6pm to get me booked in for face to face next day.

My TSH was 117mu/l and T4 4.8pmol/l

The GP on phone was really good, talked through everything and said might need a specialist referral. Asked about symptoms, family history of autoimmune diseases etc. Unfortunately he wasn't available for appointment next day but he wanted me to start levothyroxine ASAP so booked me in with another.

Got in and he said "well I've got myself up to speed with everything and without wanting to put it bluntly, you must have been feeling shit"!

He said he'd start me on 75mg (most he said he could do to start). I asked about autoimmune and he said that was most likely - said they hadn't got those results back yet. No mention of specialist, didn't feel my neck which other GP had said they do. It was a pretty quick in and out, "your prituatiry gland is screaming at your thyroid and its just not responding, once you get started on this you'll feel a million times better". Blood test again in 3 months. So off I went for my prescription, relieved that all this time there has been something wrong and this isn't just what being a mother of two feels like!

On reflection I'm now wondering should I have asked more questions/expected more in terms of the 'why'. I'm grateful to now be getting meds which will hopefully sort the symptoms but equally wondering what's gone wrong, should I be worried, do I need further investigation, visit to specialist etc. there are various autoimmune issues in my family, parental aunts both coeliac, maternal grandfather rheumatoid arthritis, maternal uncle Crohn's, wondering if there may be more to this.

Would love to hear others experience on what to expect following a diagnosis

Thanks!

[Dahliasanddaisies]

Morning! I'm glad they got you sorted with meds so quickly. Hopefully you'll feel better in the coming weeks. Similar to you, my symptoms started after my son was born and I just thought it was being an exhausted new mum! What I've gleaned from the experts on here (and I'm sure someone will come along and give you some more help soon)

- get your vitamins tested (if the GP won't do it, buy an at home finger prick test) Ferritin, b12 and vit d especially as they are usually low in people with Hashimotos

- you probably have Hashimotos (autoimmune condition) but the NHS won't routinely test for this or give you any advice. You can get a full thyroid panel test done from Medichecks or similar which includes TSH, T4,T3, and antibodies. If the antibodies are positive, then the cause of your underactive thyroid is Hashimotos.

- you will probably need to increase your dose on levo, so keep on at the GP to do bloods in 8 weeks or so, then look at your meds. There is loads of advice on here.

Take care x

[Whatdidyousay in reply to Dahliasanddaisies]

Thanks so much for replying ☺️ It's amazing what we put up with isn't it and brush it off as part of being a mum! I've felt so awful for so long and convinced myself it was all just linked to being tired. Its been ruining my life and pushed my marriage to the limits. I feel like I've been a rubbish mum, rubbish wife and crap at my job. Feel such relief there is an explanation!

My GP was pretty good on blood work, b12 and d3 seem to be within normal range, ferritin slightly down and he's prescribed iron. Calcium very slightly above range which he said he thinks should correct once levothyroxine kicks in but will keep an eye.

He's given me form for next bloods to go and get in 3 months - that has thyroid function so TSH and T4 I think, ferritin, calcium and a few other bits I'm not sure what the codes mean!

Hardest part is actually getting a blood test, our surgery isn't doing them routinely so you've either got to go to a neighbouring surgery (can't book yourself, our surgery has to and can't do it so far ahead) or one of two hospitals. The receptionist at our is an absolute cow and was so rude to me yesterday! I think when the time comes I'll be going to the hospital drop in again, it's a pain as it's a fair drive and not somewhere I'd have cause to go otherwise but the lady there was lovely and I was in and out in 10 mins when I went to get this first lot done then results same day with it being at hospital as it goes straight up to lab.

[Dahliasanddaisies in reply to Whatdidyousay]

I know what you mean about feeling like a crap mum and wife! It's nearly broken me.

Ref vitamins, it's crucial they are 'optimal' not just in range, so check out the various posts on this. You need good levels to help your body make use of the thyroxine.

Blood tests are a pain, I also usually go to the hospital as you can go first thing and the nurses are much better at getting blood from me

The NHS won't test you for everything that is helpful , so if you can, it's worth getting a medichecks (or similar) full thyroid panel. There are lots of companies offering home testing. I do this regularly to keep track of my levels without involving the dreaded GP surgery

[Sparklingsunshine in reply to Whatdidyousay]

They can and should test your thyroid antibodies but you might need to push for those. Often they are tested after you start on Levo, obviously with your very high TSH its a priority to get you started on treatment.

The NHS assumes everyone with hypo has autoimmune disease but actually its around 90%. I dont have raised antibodies and never have so my hypo is probably caused by something else.

Also as the treatment for autoimmune hypo and non autoimmune hypo is exactly the same, ie Levo, they dont really always see a need to test, but they should. Autoimmune hypo or Hashimotos, named after the Japanese doctor who discovered it, can be more complex than straightforward underactive thyroid.

It can run in families like all autoimmune diseases and far more women are affected than men. And having one AI condition can predispose you to getting others. So its worth pushing the NHS to get your antibodies tested.

[Whatdidyousay in reply to Sparklingsunshine]

Thanks, I'll ask about the antibiotics, I couldn't quite tell from what GP said yesterday if they have been done and just not back yet or if they haven't actually done them yet.I am a little worried about other AI conditions given family history, something to keep an eye on for sure

[tattybogle]

Be prepared for some up's and downs in the coming weeks/ months and be kind to yourself : When starting levo it is common to feel 'nothing much' for a week/10 days , then start to feel a little better , but be aware ~ it is common for this to wear off by about week 5/6/ 7/8.

If you do start to feel really lousy again before 3 mths is up , try and request they bring the blood test forward to 2 mths . It is likely you dose will need adjusting a little after the test . (they have to start somewhere so the 75mcg was just a guess at your likely dose, many people end up on a dose somewhere between 75mcg and 150mcg)

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A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

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[Whatdidyousay in reply to tattybogle]

Thanks, that's really useful. My GP didn't say anything about possible ups and downs, just you'll start to feel much much better soon.I'm not holding out for a miracle but equally hopeful I'll start and feel something soon so I know it's working! Feeling particularly shit today, perhaps a come down from yesterday's initial excitement that they can 'fix' me!

[Sparklingsunshine in reply to Whatdidyousay]

I think the word I would caution is patience, easier said than done I know but it really is the name of the game. Normally we start on 50mcgs of Levo and gradually titrate upwards in 25mcg installments everyb6- 8 weeks or so until we reach our optimal dose, and that dose will vary, its very individual.

And be prepared for a lot of tweaking and fine tuning. Even once we reach our prefered dose its not static. Weight loss or gain, starting or stopping other medications, or hormones like the pill/ HRT can all affect our dose, even the seasons. Some people find they need less Levo in the summer.

Hopefully you will start to feel some improvements soon, but be prepared for some ups and downs. Cut yourself some slack and be kind to yourself. Your thyroid didn't pack up overnight and the " cure" won't happen like that either.

[tattybogle in reply to Whatdidyousay]

yes it's a weird bunch of feelings to deal with ,initial relief that after months of blaming yourself, it turns out you're not actually a crap mother / wife / employee / human, there is something properly wrong with you (and TSH over 100 and 'bugger all' T4 is definitely 'something very wrong with you' ..... you had become properly hypothyroid)

......followed by the realisation that there is something properly wrong with your body that is a almost certainly going to be a lifelong condition ... which rather pulls the rug on your previous confidence in your body to fix itself .

many GP 's are rubbish at giving a realistic expectation of what to expect ,,, a lot do give the impression you'll be fine in a week or so.

My GP was a bit more informative ,, he said " your immune system is eating your thyroid gland, start on 50mcg but your dose will probably have to be increased over time as more of it get eaten"

(mine is autoimmune hypothyroidism , it's very likely yours is too , but the TPOab (thyroid antibodies) results should confirm that when they come back...mine also started after a birth ... but it took 4 yrs for anyone to think to test my thyroid , but even at that point i was no where near as hypo as you are) ,

to be honest , you probably deserve a medal for keeping going at all over the last few months ,, i was really struggling to function properly and my TSH was only 7 ish and i still had a reasonable amount of T4. I really don't want to find out how bad i'd feel with your results.

So be patient , expect some ups and downs, let your family and work know this may happen and be realistic about your recovery, try not to get downhearted when you feel like you have gone backwards .. .... realistically it may take your body just as long to feel properly better and stable again, as it took it to go this wrong.

it's a game of snakes and ladders ... but it's a game that most of us win in the end.

[Dahliasanddaisies in reply to tattybogle]

That's so helpful to hear tattybogle thank you for sharing x

[Whatdidyousay in reply to tattybogle]

You've summed it up perfectly, such a mix of emotions.It's weird really, I have felt so shit for so long I think I'd forgotten what it felt like to be normal and now I reflect on things knowing it's not just that I'm a useless human being, I feel like bloody hell, how did I actually keep going all this time. It's amazing what you can do when you have little choice i.e. two small humans to provide for and keep alive.

It's hard not to get down heartened as there are so many people online saying they've been on this path for decades and still no better.... just got to persist I guess and hope things do eventually start to improve.. certainly feels like it can't get much worse so that's something at least!

[tattybogle in reply to Whatdidyousay]

it's very important to remember that people who are having difficulties are the ones who go looking for answers online and become members of forums such as this . Nobody bothers to go online to write "my life was crap for a few yrs but i got back about 70-80% of my former wellbeing /energy within about 6 months from starting levo and didn't have any particular problem apart from needing me dose adjusted occasionally" ~ they are happy enough with their current energy levels etc and are now just busy trying to catch up up their life and laundry.

and it's the people with more complex difficulties who tend to stay on line (and often build up their knowledge and become 'expert' patients ) ...... people who do not encounter significant difficulties are not represented in the stories of patients you will find online ..... there are plenty of people who don't have any significant problems once their dose of levo is 'more or less' correct for them .... (and this is the main reason why those of us who do have problems find it so hard to be taken seriously by GP's and as a result , we constantly sound Pi**ed-off about the whole thing )

At this stage , it is better for your head to assume you are most likely to be one of the more lucky ones. ... there is no reason to think you won't be .......my auntie was on levo for most for her life ... and she had a fine life , galivanting around the globe working in Kenya and Papua New Guinea in the 1970's , living with the locals in mud huts and then running a smallholding with sheep singlehanded in her retirement.

[Whatdidyousay in reply to tattybogle]

That's a very good point re the kind of people likely to post, puts I good perspective on things, thank you.

I joined a Facebook group but immediately left as it was just nothing but people complaining about anything and everything, not good for my mental state at all!

Things seems much more calm and rational here

[tattybogle in reply to Whatdidyousay]

yes , this is a nice safe place , lot's of lovely folk who like to get their facts as correct as possible, and which is kept updated on the latest research by a rather brilliant and dedicated band of Admin .

Wise move giving the moan-a-lots a swerve for the time being.

[serenfach]

Sometimes it is difficult to see progress, but one day soon you will do something you would not have thought of doing now. For me, I thought "right, clean the windows" and then I realised I would not even have thought of doing that before. At my worst I would not have even known if I had windows!

You may like to keep a diary of how you are feeling, score each day in 100, so a really bad day is 99. In around 6 weeks you could see yourself at 60 and after more blood tests and dosage alterations, you could be down the 25!

The worst thing about this illness is the length of time each adjustment takes - but you are climbing a mountain, have been given good boots and the view gets better the higher you go.

Good luck and sending a hug.

[humanbean]

One thing to be aware of is that doctors are not good at fine tuning doses of thyroid hormones.

If the perfect dose for you turned out to be 100mcg Levo per day it would probably be easy.

But if your perfect dose was 85.7mcg Levo and 6.25mcg T3 it would take an awful lot longer to get there.

Doctors also tend to adjust doses in big "lumps" i.e. they will increase or decrease your dose by 20mcg per day (in the UK) or 25mcg per day (elsewhere) at a time. (The UK doesn't use 25mcg Levo tablets as far as I know, they use 20mcg tablets.)

I currently take 50mcg Levo on two days a week (Monday and Thursday) and 100mcg Levo for the other 5 days a week. It averages out to 85.7mcg Levo per day. (I also take T3.) I don't think many doctors would have got me to that dose, and I had to find my own way there. You don't always need to admit everything to doctors. If you are prescribed 100mcg Levo per day but cut tablets to reduce your dose a little, just keep it to yourself.

Be prepared to start cutting tablets to get to your perfect dose once you get to the fine tuning stage. Some people cut tablets using a pill cutter, but personally I use a scalpel. I've got better at cutting tablets with practice. Scalpels and hobby knives are available on Amazon, or you could look for a hobby shop.

This is more or less identical to what I use for cutting tablets - look out for the requirement for age verification, which I was never asked to do when I bought mine several years ago. Not all the scalpels I've seen on Amazon insist on age verification. :

amazon.co.uk/Yoezuo-Precisi...

[Abbie10101]

I saw a private endocrinologist recently I have postpartum thyroiditis so over active thyroid for me, he felt my thyroid got me to swallow whilst he held it, told me to hold my arms out with my fingers stretched and close my eyes, got me to follow his finger with my eyes weighed me listened to my thyroid gland with stethoscope and my heart, I don't know what they do with underactive but this is what the Dr did for me, being a mother of 2 is hard enough I have a 17 month old and 6 month old I hope you feel better soon xxxx