needing direction: I tick all the boxes in the... - Thyroid UK

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needing direction

tia1812 profile image
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I tick all the boxes in the checklist, mum had a goitre and a growth on her thyroid non cancerous. My symptons are joint pains, pins and needles, cramps, anaemia some months, some months chronic fatigue, mental fog, depressive episodes, absolutely no drive whatsoever sometimes and self inflicted isolation, constipation, one left dry eye that sometimes weeps for days. I can cope with the physical symptons but the mental one's I find really hard, however one period cycle in every 3 or 4 kickstarts whatever it is that's faulty in me, I get up and am literally superwoman, I hit deadlines with my job, I'm organised, I've got the drive back to do the stuff that gets left when I'm low. This kicks in exactly 24hours before a period starts but like I said, its not every period. Gradually over the days that follow being supercharged I can feel the energy almost physically draining away and I start to slump again, struggling to function. I paid an online gp who suggested Hypothyroidism which after reading the definition symptons etc made perfect sense, its interesting to note also that my sisters share the same symptons including the leaky eye. My health authority goes on the TSH test and my results came back normal whatever normal means, I've read somewhere that TSH alone isn't a reliable indicator but don't know what else to do. Any suggestions?

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SeasideSusie profile image
SeasideSusieRemembering

Do you have the result of your TSH test? If so, post it, with reference range (usually in brackets). If not, and if you are in the UK, then ask your surgery for a print out, we are legally entitled to our results.

If your GP can't or won't do any other tests then see about getting them done privately with a fingerprick test to do at home (or arrange a venous blood draw). You will need

TSH

FT4

FT3

TPO antibodies

TG antibodies

And always useful

Vit D

B12

Folate

Ferritin

There are two recommended labs that offer this test

medichecks.com/thyroid-func... (sometimes on offer on a Thursday at £20 off)

bluehorizonmedicals.co.uk/t...

Once you have those results, make a new post for members to comment and suggest a way forward.

tia1812 profile image
tia1812 in reply toSeasideSusie

Thank you. I just rang for the results but will go and pick them up. I'm feeling gutted by the result cos this means a lot. My cousin had the same symptoms but much worse, she had perniceous anaemia, weight gain that didn't match her diet, incredibly depressive episodes which resulted in 2 suicide attempts, a (I believe wrong) diagnosis of bipolar and a 3rd successful suicide attempt. I want to get his fixed

SeasideSusie profile image
SeasideSusieRemembering in reply totia1812

So sorry about your cousin. I think it is important that you get all those tests done that I have listed, see if your GP will do them (mention the family history if necessary) or do them privately.

shaws profile image
shawsAdministrator

'Normal' with regards to blood tests for thyroid hormones means we come within the normal range. If you are in the UK, the top normal range for TSH is around 5, but we are made to wait until TSH is 10 before we get diagnosed - for some nonsensical reason.

The fact too that doctors know no clinical symptoms any longer as they all used to know them before the blood tests and levothyroxine were introduced, so they have become lazy and it is the results on the screen which dictate the diagnosis rather that the patients' disabling symptoms.

That is why it is recommended that if having a blood test for thyroid hormones that it has always to be at the very earliest possible, fasting (you can drink water) and allow a 24hour gap between your last dose of levothyroxine and the test and take afterwards.

If I have a blood test at 8 a.m. the TSH will show a figure but if it is at 8 p.m. it will be entirely different and maybe the doctor will reduce our dose of levo or any other thyroid hormones we take.

thyroiduk.org.uk/tuk/about_...

Mamapea1 profile image
Mamapea1

tia ~ so sorry about your cousin, that is terribly sad, and your feeling that she was misdiagnosed may well be correct. However as you can see already, there are so many knowledgeable members on this forum, that it is very unlikely you will suffer in that way. If you provide the relevant test results, (some may have to be done privately as NHS is seriously lacking), then you WILL get your answers. In the meantime, try not to worry too much ~ you are in the right place! Warmest wishes Mamapea x

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