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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Tell me your underactive thyroid symptoms?

324 replies

DaisyCat33 · 19/12/2023 20:58

So I have recently been diagnosed with "mild" hypothyroidism, or underactive thyroid. My GP wants to test again in a few weeks to make sure the results are the same. If they are he is willing to prescribe levothyroxine at that point.

My symptoms are dreadful. I'm very unwell and have been for awhile. Extreme tiredness/sleepiness (12-14 hours sleep a day), tired all day, brain fog, drunk feeling, dizziness, hair loss, depression, anxiety, joint pain, long periods, the list goes on... I'm off work and struggling to even leave the house.

My GP seems surprised I'm so ill based on my results, which are:

TSH 6.22 (ref 0.7 - 4.78)
FT4 11.2 (11.5 - 22.7)

I feel like a hypochondriac because GP keeps saying I should have "mild or no" symptoms with these levels... even though it IS hypothyroidism!?

Am I being crazy here? Can you tell me your symptoms if you have this too? And what were your levels at diagnosis?

OP posts:
Thread gallery
7
pharmachameleon · 23/12/2023 09:50

Agree with the dietary advice further down this thread. I was so bloated when I was diagnosed I was really worried I had ovarian cancer. My TSH was 69 and meds brought it back to normal within about 2 months however I was still super bloated and felt like food just wasn't being digested. My GP said to give it more time as my TSH was so high. Anyway I now don't eat gluten and avoid lactose and my dietary issues are 95% resolved. I'm not as strict as I was at the start as it's not easy so I'm happy for being almost cured!
For those looking for weight loss advice-do you eat pasta and bread etc? You may find if you cut these out weight loss will follow. I'm a size 6/8 and find it relatively easy to keep weight off if I avoid wheat/gluten.

CrunchyCarrot · 23/12/2023 10:24

Merrypoomassaytheelves · 23/12/2023 08:12

@CrunchyCarrot They also took my T4L-1.0 and Fsh-4.3..does this mean anything?
I also have low iron and calcium and some signs of auto immunity on a urine test?

Not sure what T4L is unless it's T4 level? I don't know, anyway I'd need the range to make sense of the number.

I think FSH is follicular stimulating hormone, relates to how near menopause you are but I don't know anything about levels for that.

WhateverMate · 23/12/2023 10:48

Panackelty · 23/12/2023 00:32

@WhateverMate that’s how mine started but it was 4 or 5 yrs before I had a thyroid test, can I ask what triggered your test if you had no symptoms? Your tsh probably climbed high to keep your FT3 up so because of the thyroid test they caught it in time.

What triggered the test was 'luck' really.

I went for a smear test and my GP said that as I was 52 and hadn't had my over 40 or over 50 blood tests, I should probably have them (just hadn't got around to it before), so I grabbed a form from reception on my way out and booked one.

But the puffy watery eyes had been going on/off for about 2 years before that and my thyroid was 'very underactive' according to the doctor.

I never ask for numbers though, should I? and do they email them?

MikeRafone · 23/12/2023 15:34

never ask for numbers though, should I? and do they email them?

they’ll be a n your NHS app, under tests, all your test results should be there

Panackelty · 23/12/2023 16:15

@WhateverMate
Thanks, I kick myself for not having one sooner but didn’t really know the thyroid was so important then! They put it all down to just menopause and didn’t do blood tests.

Yes get either printouts if all blood tests including ranges from reception, or if they have online access register and access online. Sometimes you are low in range but not optimal or they don’t interpret the results well, so best having your own records.

WhateverMate · 23/12/2023 23:33

MikeRafone · 23/12/2023 15:34

never ask for numbers though, should I? and do they email them?

they’ll be a n your NHS app, under tests, all your test results should be there

Oh my goodness thank you @MikeRafone!

I've got the app but didn't know my results were on there. I've only really looked at the prescriptions bit.

I always wondered how so many people knew all their numbers, so thanks Xmas Blush

Alalalalalongalalalalalonglonglilong · 23/12/2023 23:38

Haven't RTFT yet but just got bloods back and my cholesterol has gone way way up, into dangerous zone. Last time my levels were OK so I'm v worried. But apparently this is linked to thyroid, news to me til I googled it. Don't know my numbers but I am gone underactive again so am increasing meds now.

Alalalalalongalalalalalonglonglilong · 23/12/2023 23:49

tellmewhenthespaceshiplandscoz · 22/12/2023 11:31

Feel so sad that so many of you miscarried before diagnosis Sad I did too although a fair few years before. Wondering if there's a link

I only found out when I had bloods after my second miscarriage. I had symptoms for years but always put it down to stress. It makes me sad to think of even now many years later.

timtam23 · 24/12/2023 00:07

My TSH was only slightly above the reference range (it was 4.7) and T4 was normal, so it was classed as "subclinical" and wouldn't automatically lead to treatment. But I felt absolutely shocking - completely exhausted, weight gain of around a stone, dry skin, hair loss, feeling the cold terribly, even my eyelashes were growing shorter and sparse - and begged my GP to let me try thyroxine. On 25mcg of thyroxine my TSH was still slightly above the top end of normal range so I'm now on 50mcg and feel so much better. More like my normal self.

trickyex · 24/12/2023 16:16

@CrunchyCarrot
thanks for doing the calculations, yes they are on the low side especially T3. Am not sure how to raise them without medication. No chance of getting that on the NHS as my numbers are in range even if cholesterol isnt.
I am working on all my vitamin /iron/mineral levels myself with supplements/diet/rest etc but its hard to do it all solo and so expensive to go private.

raindropsonatinroof · 24/12/2023 16:21

OP- my GP refused to give me meds as mine was borderline too. I went to a private doctor (as was also peri menopausal so was looking for HRT). I now get a prescription from him and he said doctors should go on symptoms, not refusing meds due to being borderline as what's borderline for you might affect you greatly whereas for someone else it might not affect them at all.
My symptoms were: weight gain, exhaustion, thin and dry brittle hair, heavy period flooding, brain fog, and generally feeling like I had been drugged due to having no energy.

I'm now on 50mg levothyroxine and feel fantastic, I have so much more energy now and my shiny hair is back.

Supersimkin2 · 24/12/2023 16:25

185mg. A lot of joint pain and fatigue. Hair, nails etc shredded, dry skin, no body hair.

Wound healing is a horror - takes months for a cut to heal.

stomachameleon · 24/12/2023 17:36

@Supersimkin2 do you think wound healing is linked? That would make a lot of sense for me personally.

CrunchyCarrot · 24/12/2023 19:12

stomachameleon · 24/12/2023 17:36

@Supersimkin2 do you think wound healing is linked? That would make a lot of sense for me personally.

Yes it is linked. Everything slows down when your thyroid slows down, including healing of wounds.

https://www.palomahealth.com/learn/hashimotos-injury-recovery

Heyhoherewegoagain · 24/12/2023 19:21

For those asking re weight loss, I had a gastric sleeve-I was morbidly obese

stomachamaleon · 24/12/2023 21:39

@CrunchyCarrot I had major bowel surgery (tumour) booked and had a pet scan which found thyroid cancer and lymph node. (Incidental they call it)

I had my thyroid removed then bowel surgery .(four month gap between them)

I had to delay my radioiodine treatment as I hadn't healed after the bowel surgery. I still had open wounds and in the end they gave me the smallest amount. My cancer has now returned in my lymph nodes. Or maybe not gone anywhere? I assume it would really slow down if you didn't have one? Regardless of levothyroxine?

Anyway thank you. I didn't release that was the case.

CrunchyCarrot · 24/12/2023 22:01

stomachamaleon · 24/12/2023 21:39

@CrunchyCarrot I had major bowel surgery (tumour) booked and had a pet scan which found thyroid cancer and lymph node. (Incidental they call it)

I had my thyroid removed then bowel surgery .(four month gap between them)

I had to delay my radioiodine treatment as I hadn't healed after the bowel surgery. I still had open wounds and in the end they gave me the smallest amount. My cancer has now returned in my lymph nodes. Or maybe not gone anywhere? I assume it would really slow down if you didn't have one? Regardless of levothyroxine?

Anyway thank you. I didn't release that was the case.

Oh goodness that's a lot to go through, and you are still going through it. I really hope you will feel much better soon.

Supersimkin2 · 24/12/2023 22:23

Oh yeah, I put on four stone.

stomachamaleon · 24/12/2023 22:33

Thanks I appreciate that. More lymph nodes being removed in the new year and then radioiodine again.
This thread has been so informative though. Information is not forthcoming.

DaisyCat33 · 03/01/2024 10:48

Hi everyone. Thought I'd post a little update as I saw my GP this morning.

So my TSH came back a little higher again - 6.5 this time. They also tested my antibodies this time, and they came back extremely high - 1300 when they should be under 60 apparently. So I officially have autoimmune hypothyroidism now, or "Hashimoto's disease"

I've been feeling unbelievably awful over Christmas, so it feels validating to know I have an actual autoimmune disease. I've started feeling breathless after minimal exertion, and had some episodes of awful heart palpitations.

The GP was just about to prescribe levothyroxine when I mentioned the heart palpitations... so now he wants to do an ECG next week/potentially check with a cardiologist before prescribing. He did actually apologise for the constant delays, and assured me he isn't trying to withhold medication. He just wants to be completely sure I'm safe to take it first. He said its possible the palpitations are caused by the Hashimoto's, but we need to check for other things first. If I get another episode of palpitations before the ECG next week, I've been instructed to go to A&E 😕which is a bit scary.

Overall its positive news I suppose. Hopefully my heart is fine and the palpitations are actually caused BY the hypothyroidism, and I can finally get some meds asap!

OP posts:
Ilovefluffysheep · 03/01/2024 11:33

If you haven't already, please get yourself over to the thyroid section of the Health Unlocked forum. Should be able to find fairly easily, I think there is also a link on the Thyroid Uk website (another extremely helpful website).

There are some very knowledgeable people over there. As has been mentioned on here, GPs know very little about thyroid disease, and even less about Hashimotos. Even endocrinologists, who should be the experts, don't seem to know that much about it, and the majority of them are diabetes experts rather than thyroid experts. Unfortunately, you'll find that you need to become an expert in your own condition. The Health Unlocked forum can definitely help with that.

My TSH was similar to yours at the start of my journey. I had to do a medichecks blood test to get all my thyroid labs done, including antibodies, which showed than my underactive thyroid was down to Hashimoto's disease. I had to bed to be started on levothyroxine, and was started on a stupidly low starter dose of 25mcg. This was increased every 8 weeks, as I felt no better (in actual fact, I was pretty much bedbound for a year with how awful I felt). At 150mcg, my TSH went under the bottom of the range, but my T4 and T3 were still low, showing that I needed an increase. However, GP said her hands were tied as my TSH was out of range, and that's all they look at.

I had a lot of help from Health Unlocked, and started on T3 medication alongside my levo. This helped a lot. I'm a few years down the line now, and in the last 12 months have moved to T3 only medication, as levo really did nothing for me. I self sourced for a long time (you can buy it over the counter in pharmacies in Greece for 2 euros a box, I also ordered online). I was referred to an endocrinologist when I had already started T3. He wasn't happy, but he did also listen to me and my symptoms, and how they'd improved with T3, and we came to a bit of an understanding.

I did eventually manage to get him to prescribe it to me, then had another fight to get it prescribed by my GP after 3 months (they ended up doing an individual funding request). It's been fight after fight, and really hard work. I'm lucky that my husband is quite science minded, as has been right there beside me helping me fight.

I'm now on 75mcg of T3 per day, which I take in one dose. I believe I have thyroid hormone resistance issues, which is why I need such a large dose. I'm still not completely well, but I can function, and compared to when I was bedbound taking levo I'm a million times better.

The GPs don't understand how to read my blood tests at all, and the last two I've had they've called me in a panic. My TSH is barely perceptible (to be expected, especially being on T3 medication), and my T4 results were pretty much zero (again, to be expected, as I'm taking T3 medication rather than levo which is T4 medication). When I explain it to them they're fine, but shows they really haven't got a clue. I also have to fight to get my T3 tested, as nowhere likes doing it, but given I'm on T3 medication only it's probably the most important test for them to do!

I also went gluten free 3 years ago. I did have the coeliac blood test at the time, but didn't realise I wasn't eating enough gluten (should be the equivalent of 2 slices of bread for 2 meals per day for 6 weeks prior to testing) and of course it came back negative. There is a lot of evidence out there to show it can help people with Hashimoto's disease though.

Sorry for such a long post. If anything doesn't make sense, I've just come out of hospital following emergency surgery, so I'm firing on even fewer cylinders than usual!

Puddinggulper · 03/01/2024 11:39

So glad the GP is taking it seriously and you’re on the right track to getting help x

CrunchyCarrot · 03/01/2024 16:42

I am so, so glad your GP is finally going to prescribe you thyroxine!! Most likely the palps are from Hashi's, hypothyroidism affects the heart as well as everything else. I hope you will be feeling far better in a few months' time. It takes time for Levothyroxine to build up in your body and it may take some dose increases for you to feel better.

awaynboilyurheid · 03/01/2024 17:54

I had heart palpitations when I was low in thyroid hormone and high antibodies, I also got it anytime I increased my thyroid medication ( levo or later T3 and later Non desiccated) and I’ve had to go very slowly with any increase in meds I once spoke to a Dr who actually knew a lot ( rare I know ) about the thyroid and he said it’s the heart getting used to a change in medication so just go back to original dose and every other day increased dose but go so slowly and heart will get used to new meds.
Agree with I love about researching on line and going gluten free ask your GP for a ceoliac test before you do, however many false negatives apparently.

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