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Thyroid help.

18 replies

stressedtothemax77 · 13/10/2016 11:10

I have been visiting my GP for around 10 years now asking for help with what I believe is a problem with my thyroid. We have a family history of thyroid problems and I have struggled with symptoms that seem to suggest there's something going on.
Every time I have the blood test I'm told my result is normal and sent on my way with tablets for depression as I must be depressed Confused
Recently I visited the hospital for a totally unrelated problem but during the scan of my face and neck the consultant told me that my thyroid was "enlarged and ragged" and that this was usually seen in patients with an under active thyroid Hmm
He wrote to my GP who asked that I come in for another blood test.
Again I was told this result was normal (my TSH was 3).
Made an appointment with the GP and went through all my symptoms and she said it definitely sounded like a thyroid issue but bloods are within normal range.
She spoke to endocrinology dept who advised them to do a different test and take it from there.
Just got the results and again they say it's normal (TSH: 3, FREE T4:18)
I'm so fed up and don't know where to turn now. I'm sick of feeling unwell all the time and having no answers.
I guess my question is are these results normal and if they are what else could be causing my symptoms if it's not my thyroid?

Jeez that was long!

OP posts:
stressedtothemax77 · 13/10/2016 22:07

Anyone?

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PeppasNanna · 14/10/2016 15:09

Bump

lovingmyginandiphone · 14/10/2016 23:29

Hi, I've just been diagnosed and find www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html very useful

My T4 is 8.9 and the normal range in my city is apparently 9-18, plasma TSH is 5.68 and the normal range is 0.3-4.2, my haemoglobin is also a bit low at 114 with the normal being 120-150

It's worth getting a second opinion if you can as for years I've known I was borderline but my gp didn't want to treat it and yet within weeks of changing gp surgeries I am being treated with levothyroxine and trying to get the right levels sorted..... starting to feel a bit better (and am also on iron tablets now!)

lovingmyginandiphone · 14/10/2016 23:30

Oh and ask to be tested for vit D and B12 deficiencies as apparently they are common with thyroid too

booox · 15/10/2016 12:36

It's really tricky as according to bloods you are just about ok; your thyroid has enlarged to accommodate probably antibody activity, and keep your t4 roughly ok, but it doesn't mean there isn't an issue which could get worse.

I'd ask if any antibodies have been taken - I wonder if this is the other test they mentioned?

Have a look at the nice guidelines for borderline results, WITH antibodies; I think if you have symptoms you can be treated. Borderline is usually 4.5-10 though.

I'd ask to be monitored every three - 6 months as as result could come back higher.

Another option is to be referred to an endo to get a really clear explanation and plan of action or as said above go to another GP.

With family history It's a v strong indicator.

A low dose of only 25 or even 4 doses of 25 a week would be enough to ease symptoms, but you're likely to need more eventually.

By the way, if you wanted to conceive, tsh 3 is way too high and you'd be put on thyroxine according to nice.

booox · 15/10/2016 12:37
  • according to your bloods that week; in a month they could be different.
booox · 15/10/2016 12:43

Nice: subclinical hypothyroidism

• Refer or discuss with endocrinology (the urgency depending on clinical judgement) people with subclinical hypothyroidism (SCH) who:
◦ Have a goitre, nodule, or structural change in the thyroid gland — if malignancy is suspected, refer using a suspected cancer pathway (for an appointment within 2 weeks). For more information, see the CKS topic on Neck lump.

booox · 15/10/2016 12:45

I think what the hospital found would be a goitre. So I would say according to this, refer to endo (which it seems they have done but have endocrinology said what to doing term?)

stressedtothemax77 · 16/10/2016 10:04

Thank you so much for your replies.
The first test I had was just TSH (for the gazillionth time!) and then the second test was just TSH and FreeT4, they haven't mentioned any other tests now and as far as they are concerned that's the end of it because I'm "normal".

The dr confirmed I have a goitre and said she could see that over the years I had visited the surgery with a lots of the symptoms of an under active thyroid but said her hands were tied due to my results.

I will check out the link and then make yet another appointment to try and push for the other tests or an endocrinology referral.

I just need to know what's going on. I'm definitely not ok and need some answers.
If it's not my thyroid then there's something else going on and nobody seems to be interested in helping me find out what it is Sad

Again, many thanks for replying

OP posts:
stressedtothemax77 · 26/10/2016 17:32

Just an update, dr has refused to do any further tests and said if problems (and levels) are still the same in 6 months she will consider a referral Sad

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wtffgs · 26/10/2016 17:39

Sad My sympathies.

I present with all the sx and have a strong family history (only one out of 7 without a diagnosis)

I'm waiting for the last lot of bloods. I'm not a hypochondriac nor do I particularly want to be on medication for the rest of my life. I would just like even a quarter of the energy and mental clarity I had even just a year ago.

stressedtothemax77 · 27/10/2016 10:27

Me too!! I'm seriously concerned about my lack of concentration and memory lately, it's like I just can't think straight. I forget names all the time and lose my train of thought halfway through conversations.

I just want someone to listen to me and understand that it's not about specifically a thyroid diagnosis I want (even though everything fits), I just want an explanation of what's happening to me.

It's so frustrating isn't it.

I hope you get some answers soon Flowers

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bluebell9 · 28/10/2016 12:42

Have you had your b12 levels tested?

I produce auto-antibodies that attack the thyroid but as my levels are ok, they wont give me medication, despite having symptoms of an underactive thyroid.

stressedtothemax77 · 28/10/2016 15:53

No i haven't had any other tests. I did mention my horrendous periods and asked about anaemia. But the GP said this was "part of being a woman" and "a lot of women suffer from heavy periods".... with a look that said stop being so ridiculous Hmm

I'm thinking maybe a change of GP is on the cards.

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Johnstonbananas · 28/10/2016 16:48

Stressed my GP asked me to try taking ibuprofen for my periods. This after I told him how I can't leave the house because I'm in agony, vomiting and all the rest. I swiftly changed GP.

My period pains have been up and down with the thyroid problems I have and they are definitely linked.

Write a list of your symptoms. Go back to your GP and say everything has gotten worse (even if it hasn't- it is most likely worse than you have actually told your GP).

It has taken 2 years to get my thyroid to a stable enough level to look vaguely normal on the tests. It's a time consuming process

Haggisfish · 28/10/2016 17:02

Me too!!! I've ordered this thyroid 12 test and am going to go to the thyroid clinic in Birmingham. My throats is sore on outside and I'm sure it's thyroid. I have antibodies and am just feeling gradually more and more rubbish. Had low ferritin and vit d so was treated for those-will be interesting to see if they have improved or not. bluehorizonmedicals.co.uk/epages/89289b91-b6f9-4318-864a-f492cbae7827.mobile/en_GB/?ViewAction=View&ObjectID=7580832&PageSize=5&Page=2

Haggisfish · 28/10/2016 17:03

Last blood tests showed tsh of 3.5, so not officially high enough to treat either.

stressedtothemax77 · 29/10/2016 11:57

I took a checklist from the thyroid UK website to my GP (on the advise of the sonographer who saw my thyroid was enlarged).

I had ticked over 75% of the symptoms and yet she still said based on my bloods alone they couldn't treat me or refer me.

Haggisfish, my symptoms are getting worse too but I can't seem to find someone who will take them seriously.
I have to be "on the ball" in my job at all times, and the lack of concentration could have serious consequences.
I spend my whole shifts trying to concentrate extra hard and being aware of making mistakes, and that in itself is not helping with my exhaustion.

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