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!
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Whatdidyousay
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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.
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.
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
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.
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
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)
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."
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!
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.
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.
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