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Not my thyroid

7 replies

WinnieMaudPeggy · 07/09/2024 08:39

I have many of the symptoms of an underactive thyroid:
Exhaustion
Low heart rate
Thinning hair
Infrequent periods
Numbness in hands and toes
Muscles aches
Considerable weight gain without a change in diet/exercise
Sensitivity to cold
However the blood tests have ruled out a thyroid problem.
The weight gain is making me miserable.
When my heart rate drops into 40s, I feel it. I suddenly have no energy, feel unwell and it can take hours for me to feel ok again. This is happening during the day, often at work in the classroom so not exactly a relaxing time.
ECG has been done 3 times and honestly, I feel like the GP and nurses at the surgery think I'm making it up. However, my watch tracks my heart rate. I've even had my husband and daughter wear the watch and they don't get similar readings. My readings correlate to the feeling awful times.
I'm going back again to the GP because honestly it feels like one day my heart will just stop. That sounds dramatic but it has been going on for months and all that is happening is that I'm eating less, gaining weight and generally feeling terrible. Anyone any ideas what this could be or what else I should say to GP to get them to take me seriously?

OP posts:
DustyLee123 · 07/09/2024 08:40

Have you had your iron/ferritin and B12 checked? Are you perimenopause age?

ncforcatquestion · 07/09/2024 08:53

Did you have high blood pressure in pregnancy ? I did, and I feel like it's just made my heart a bit weaker ever since, I'm so tired all the time, and my blood pressure was high for years. But nothing that was really picked up or looked in to

WinnieMaudPeggy · 07/09/2024 08:55

They checked everything in my bloods and said all was fine.
I turned 45 last month so it could be perimenopause. I've just been prescribed HRT and it hasn't made a difference although early days as it has only been 3 weeks.
The heart rate dropping to 42 whilst in surrounded by a class of 6 year olds is still worrying me though.

OP posts:
WinnieMaudPeggy · 07/09/2024 09:02

@ncforcatquestion quite the opposite, low blood pressure in pregnancy.
I had a big operation followed by sepsis and my heart rate/blood pressure went through the roof.
The doctor at the hospital said I was panicking about going home and needed to be brave and calm down. I was discharged with blood pressure nearly double my normal range.
I had never noticed the dropping heart rate before the 6 weeks in hospital so I wonder if something damaged my heart then.
However, I am very much fobbed off/made to feel a nuisance and then get told to make lifestyle changes.
I had always been a healthy weight/bmi, very little has changed, in fact I'm even more conscious about what I eat but I've put on 3 stone.

OP posts:
ncforcatquestion · 07/09/2024 09:27

It sounds like that's what's went wrong then, in my opinion, although of course I'm not qualified to give a real medical opinion. Your doctor really needs to investigate this thoroughly. I hope you get the help you need. But try not to worry too much

SnowflakeSmasher86 · 07/09/2024 09:37

Firstly “they said it’s fine” isn’t enough. You need to know actual numbers and reference ranges.

Chances are if they tested your thyroid as part of a general blood test, they only did TSH and not a full thyroid panel.

If that’s anywhere under 5 they’ll say you’re fine.

If it’s under 10 they’ll probably still say you’re fine but to maybe keep an eye on it.

It’s not fine. Many of us don’t feel well unless it’s under 2 (and in other countries that would be the cut off for being considered hypothyroid and you’d be offered treatment but for some reason ££ the NHS have a much higher level that they consider normal). I personally need my TSH at almost zero as my thyroid doesn’t function at all so the TSH being in any way raised serves no purpose (it’s basically your body asking the thyroid to produce more thyroid hormones, so if you’re unable to produce anything, there’s no point asking! You just have to supplement it.)

I was also told my B12 was fine at a level of 290, with a reference range of around 250-900, despite having all of the symptoms you mention above and my thyroid having been treated for several years. When I pushed for B12 injections and got up to 800-900 most of the symptoms went away. So yes it was maybe within the normal range but way off optimal.

I now just take sublingual B12 lozenges as they stopped my injections after testing for IF and it being negative, without it seeming to matter that I clearly wasn’t absorbing B12 well for some reason and my levels just kept dropping despite eating a good diet.

I don’t really trust GPs now, they let down both my parents who subsequently died of undiagnosed cancers and they left me struggling with newborn baby and a TSH of 200 before finally diagnosing me. I try to get as much info from them as possible and then get private tests and medication etc to take care of myself.

AnnaMagnani · 07/09/2024 09:38

I would guess a lot of this is peri - I have been amazed how many of symptoms I thought were just 'middle age' have resolved after HRT. My joints and muscles were basically crying to have some oestrogen back. And weight just clings to me now.

Unfortunately with HRT it starts at a low dose and you change every 3 months - and it is down to you to keep complaining and not just leave it.

It probably took a year to get my HRT right.

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