Underactive thyroid. Anyone else? What to expect?

[cheerfulcoconut]

Hi,

I've just been diagnosed with an underactive thyroid following a blood test earlier this week. I have a GP appointment in a couple of weeks. What should I expect? Is there anything I can do (diet etc) in the meantime to help the problem?

For reference, I was sent for the blood test due to ongoing problems with heavy periods and severe anaemia. Looking at the NHS page, some of the other symptoms do fit me, but I'd dismissed them as not being serious enough to worry about, or just one of those things.

Are they likely to medicate? How did this change your general health?

Thank you for any advice or experiences you can share. I'm not worried as such, just curious and wondering what might be next for me.

You will likely be started on a low dose of Levothyroxine, and re-tested in a few weeks.

What to expect - in all likelihood expect to have GPs that don't understand the condition properly, don't treat it properly, and insist that if your numbers are "in range" then you are fine.

Get yourself over to the Thyroid UK website as they have lots of useful information, and also the Health Unlocked forum (thyroid section) from there. I have learnt so much from there in the last year.

I also went to the Drs with mega heavy periods, and ended up getting a private blood test done through Medichecks ironically to rule out thyroid issues (Dr was being less that helpful). It turns out I actually have hashimoto's.

Despite being medicated now (which I had to fight for and be assertive to get it raised every 8 weeks after blood tests) and supposedly having really good blood test results (I make sure I get copies of all my tests) I feel dreadful. I'm exhausted, have brain fog, have put on tonnes of weight which i just can't shift even if I try and diet, hairloss, pain all over my body and all kinds of other symptoms. My ferritin levels are low, but because they are "in range" the Dr won't do anything about them. Hairloss can occur if your ferritin is below 50, which mine is, but all they care about is the numbers.

I've gone gluten free, worked hard on trying to get all my vitamin levels up (very important) and still feel like crap. I managed to persuade the Dr to refer me to an endocrinologist, but because of COVID nowhere is currently dealing with new referrals.

My health has gone downhill dramatically in the last 18 months are so. I currently use a walking stick when out and have just ordered a wheelchair. From all the research I've done I seriously believe that all my issues stem from my thyroid.

Sorry to be so negative. When I got my blood tests back indicating thyroid disease I really had no idea just how bad things could be, and how badly it is dealt with. The health unlocked forum is a real eye opener, and there are some very well informed people on there who have definitely helped me way more than the GP.

Just a tip for you. If you're prescribed medication for thyroid problems, then you will be eligible for free prescriptions/ medical exemption. (If in England)

Thank you for your replies.

Ilovefluffysheep - thank you for sharing your story. I'm sorry to hear you've had such an awful time. I will certainly look at the website you recommended prior to my appointment and make sure I'm telling the GP absolutely every symptom I'm having. I've been exhausted for a few years, but put that down to juggling work and three small children. Weight has crept on, and it's been serious hard work to keep it at bay, particularly when combined with the exhaustion. But I'll make sure everything is on record, and hopefully I'll get the treatment I need.

I had a very underactive thyroid diagnosed when DS1 was about 8m. GP prescribed levothyroxine, told me I would be on it for life.

The levothyroxine was fine, bit of messing with blood tests to get the dose right but all was good eventually and I felt so much better.

I didn’t need meds for life though, took them for about 3 years I think.

It's not a difficult condition to manage really....just a little tablet a day and annual blood tests (or more, if suspected you're not on the right dose.)

And yeah, you get free prescriptions!

Though if I'm honest, it does seem a tad unfair. Of course I take advantage in that I claim it, daft not too, and I don't take the piss. I don't go to the GPs looking for antihistamines/OTC painkillers etc, I only use it for meds I can only get on prescription. But I'm working, I can actually afford to pay, and I know others struggle financially to pay for their prescriptions. If I was told tomorrow ''ok from now on, your thyroxine will be free but you have to pay for everything else'' I might moan a little, but would actually accept it.

I had a positive experience once diagnosed. I had terrible symptoms (massive exhaustion and weight gain ) but the gp insisted my tests were normal. Once my results got worse I was finally diagnosed and put on meds. It made a huge difference and I felt myself again. I struggled to lose the weight though. I was around 28 then and I'm 42 now.

If you have an underactive thyroid and get pregnant, you have to see you gp urgently as they have to adjust your meds and give you a blood test urgently.

Once your dose stabilises, you will be retested every year. Every time the dose changes they do a follow up test to check the new dose has been effective.

I haven't felt well in years. But then I'm 51, so thyroid and menopause arrived together, along with some years of extreme stress (various bereavements among other things). So I also have a diagnosis of fibromyalgia as well.

I can't say I feel much different for the thyroxine dose I'm on, to be honest, though I'd probably feel it if I wasn't taking it. I'm looking into other things like VitB, collagen, etc just in case that helps.

PS the medication is not free for all thyroid problems, just underactive. My husband was on carbimazole a couple of years ago for about a year, for an overactive thyroid, but he had to pay. At the time our old cat also had an overactive thyroid and was on a feline sized dose of the same drug. So noone in our house had a properly functioning thyroid gland!

I’ve had it since after my first child. Honestly it’s been completely fine, I just see it as a direct replacement for what’s missed and have no issues. Anecdotally, all the people
I know who felt unwell for a long time before being diagnosed, seem to have a harder time, so I wonder if there’s an impact from the body trying to manage it all that time. I don’t want to take away from anyone’s experience, but sometimes thyroid threads read quite scarily for those recently diagnosed, and the terrible times are not necessarily not what you will experience. for those in that situation tho.

Merename I'm not convinced my problem is thyroid, despite taking the medication. I felt like this a long time, and my thyroid results were fine for a long time. But hey ho.

Once your dose stabilises, you will be retested every year.

@picklemewalnuts
Really? I haven’t had a retest in about 5! I asked for one last year as I thought I’d gone along time without a retest and the GP said (rather patronisingly) Is there any reason you want a test? Are you using new symptoms? I felt so stupid. Like a hypochondriac

Ask him what the recommendation for retesting is. I know that's what mine does. Every September, for me.

Apparently it’s only when you have symptoms or “feel” like something is different

Sorry OP if I’ve hijacked btw. I should really read the whole thread This bit just jumped out at me

Ok, this is the thyroxine page from the nhs link here- www.nhs.uk/medicines/levothyroxine/

It clearly says you will have blood tests once a year.

So he can put that in his pipe and smoke it!

@LioneIRichTea in case you miss it ^^

I was diagnosed 2.5 years ago, and I am still struggling to get on the right dose of Levothyroxine. I usually know when my levels are going wrong because I feel absolutely freezing cold all the time, then the tiredness starts, it makes me feel really awful. I am 48, take multivitamins, get lots of exercise and eat healthily but there seems to be nothing I can do about these thyroid problems.

An underactive thyroid is common, and not everyone struggles like I have. The main thing is to keep going back to your GP and get re-tested if you still dont feel right.

Thank you @picklemewalnuts

Incase this makes you feel better... I have loads of health conditions- Addisons, hypothyroidism, anaemia, lupus, sjorgens, asthma etc etc and being honest the hypothyroidism (low thyroid) is the thing that bothers me the least. I’ve had it for 15 years and just have regular blood tests and they adjust the dose if needed and I just take a tablet for it every morning. Job done, never even really think about it! The other things I have are much more difficult to manage. Try not to worry about it.

Once your dose stabilises, you will be retested every year.

*@picklemewalnuts
Really? *

I’m sent blood test sheets on my repeat prescriptions annually to pop to hospital and get tested. I don’t have a thyroid so technically my dose would be the same but it has been tweaked in occasion

I am interested in this thread as her Dr has told my daughter her thyroid tests were low, but says he can't make out what the results mean and is referring her to a specialist, she is very worried now,
Anyone any idea about unusual results and what they couild mean,
She had cysts on her thyroid gland for years but never caused her any problems

I think I’ve got an under active Thyroid seeing my doctor tomorrow TSH has gone up slightly from 5 in August to 5.6 now. . My FT4 has gone down from 16 to 13 too. Generally I feel cold a lot, tired and sluggish.

The more I read goggle and MN threads I’m feeling nervous about medication and what will help.

Has anyone had any positive experiences?
Feel free to tell me to get a grip too!

I was diagnosed with underactive thyroid after my periods stopped. I also used to get purple fingers and toes when it was even a tiny bit cold. I was referred for an ultrasound. That was clear and I just have annual blood tests. It's been about 23 years now.
When I first started the thyroxine I was a bit manic (I had been very lethargic before) but it calmed down after a couple of months. No issues since then.