Possible underactive thyroid

[gostiwooz]

Can anyone help please? I have all the symptoms going, and I saw the GP for blood test results today and they said that the thyroid test was normal. I asked what it said and apparently the TSH is 2.96 which according to the GP is within the normal range. The thyroid antibody test was negative.

Having read other threads on MN, I'm not sure where to go from here?

[SinkGirl]

If you figure it out let me know. I’m in the same boat, have been for 11 years. I too have all the symptoms but results in normal range. I’ve done private tests where my TSH is usually about 3.9 (once it was 5.95) but FT4 and antibodies in normal range - each time the GP repeats it, TSH is mid 1s and they won’t trust the private tests.

I’ve just had a six month period where I had hyperthyroid symptoms for about two weeks of every menstrual cycle, then gone again. I’m now leaking breastmilk, another sign of thyroid issues, prolactin levels are normal and I’m back to the hypothyroidism symptoms again.

GP will run random blood tests and say all is normal and that’s that. I honestly have no idea what to do but having those phases where symptoms swung the other way has me sure that there’s an issue. I just don’t know what it is and my GP certainly doesn’t care.

I know a lot of people end up self medicating with stuff bought online and honestly I understand why.

[gostiwooz]

Honestly, my head was swimming by the time the doctor showed me the results of all the tests, there must have been about 50 of them, and I'm now down for yet more. They seem to be testing me for everything under the sun and can't find anything. So why do I feel so bloody awful all the time (and have done for years)?

[gostiwooz]

Just out of interest, how much do private thyroid tests cost, roughly?

[SinkGirl]

I know that feeling.

The doctors seem to believe that something isn’t right. But when tests come back negative the response is just a shrug and that’s it. Until a few months later when I get desperate and go back and start all over again.

There’ve been times where I’ve wondered if I’m going mad and imagining it all but after the last six months I highly doubt it.

My normal symptoms are:
Severe fatigue (they say I have ME)
Peripheral neuropathy that’s worsening (they say I have fibromyalgia)
Complete loss of sex drive
Unexplained weight gain
Hair thinning
Always cold / low body temp
Acne all over my face, back and chest

Then out of nowhere I had spells where I had:
Very high BP and heart rate
Felt like I’d taken amphetamines
Boiling hot
Sex drive back 100%
Fatigue disappeared
Insomnia / waking at 4am wide awake

It’s like a switch being flipped. This lasted about six months on and off and now I’m back to the hypothyroidism symptoms all the time. I just want to know what the hell it is because these periods have shown me that there is a way to feel better, something must have changed. It lined up with the first half of my cycle but my hormone levels are all normal.

I use medichecks - there’s a really good panel that includes various vitamins and is usually £99 but they have offers on frequently, especially thyroid test offers on a Thursday. This is via finger prick but you can pay extra to have blood drawn (think it’s about £39).

The basic thyroid tests are much cheaper - £40 or so? But it’s a good idea to get the whole panel done. Ideally you should do it first thing in the morning, when you haven’t eaten or drunk, as TSH is higher then than in the afternoon.

Do you smoke? Smoking suppresses TSH levels and thyroid antibodies so they appear lower than they are, as do some medications. If you do smoke, try to quit and then test around two weeks later.

The issue is whether your GP will believe the private results. Mine won’t which is ridiculous. She said to me “I think doing these tests is making you anxious” - er no. Having no idea what’s wrong with me is what’s making me anxious - I don’t think for a second it’s anything sinister, I just want to feel well again.

I hope you get some answers.

Have they checked your vitamin D? At my most unwell a medichecks test flagged up a severe deficiency, GP had never checked for it. I’ve been following the vitamin D protocol for a while and I wonder if that made a difference - I stopped when I ran out and things have gone downhill since so I’ve just started again. May be a coincidence.

[gostiwooz]

They've checked my vitamin D in the past and it was a little bit low, but I think that was because it was in about February. I do spend plenty of time outside, so I dunno. That's one of the ones on the ever-lengthening list for them to test next time.

How does the Medicheck test work then? How do you take your own blood?!

[DobbinsVeil]

I think the advice is to get the blood test done early morning as that's when the TSH is at its highest. I've also been told nicotine can suppress TSH.

I do sympathise, I had mine checked a few times over the years as there's a strong family history. Even when it came back positive for antibodies because my TSH was normal range, it was watch and wait.

When it did finally test out of range it was 44.2, so there was no dispute.

[gostiwooz]

That's interesting about taking the test early morning, because the one at the doctor's was taken mid-afternoon.

[DobbinsVeil]

I'm not sure the medics agree, but on a health forum (health unlocked) the general advice is early morning but perhaps not to share why you want it done then. The hospital near me starts walk in tests at 7am, so they assume work commitments.

[gostiwooz]

My GP's surgery operates on the 'you get an appointment when we say, and within a month if you are lucky' system.

[EarlyBird123]

My GP here tells me the same, that it’s all ok. But i started seeing an endocrinologist in my home country (where they take thyroid issues more seriously) and i was put on meds straight away based on the same results, so go figure...

[SinkGirl]

They send a lancet and some small tubes - you soak your hand in warm water, then use the lancet to prick your finger and squeeze to fill the tubes. I am a terrible needle phobic and had to get DH to do the lancet the first time but actually it’s much less awful than a blood test!

Almost half of Brits have a vitamin D deficiency and even being outdoors a lot isn’t sufficient for optimum levels. I’d definitely recommend googling the vitamin D protocol - it’s something easy to do yourself and see if it helps.

[DobbinsVeil]

My GP service keeps the early ones for the fasting tests which is understandable. Fortunately the walk in clinic is only 20 minutes drive for me so I do that instead.

[SinkGirl]

TSH peaks in the middle of the night and by mid afternoon it’s half what it was in the night, apparently.

If you lived in America or much of Europe, with a TSH of over 2.5 and lots of symptoms you’d likely get treatment.

If your TSH is above 4, you can ask for a trial of treatment - they call is subclinical hypothyroidism but patients say that they have symptoms at this level and clearly policies in other countries agree. I have no doubt that it’s a cost saving measure in the U.K.

[SinkGirl]

Same with the blood tests here which is tricky when my symptoms vary so much. If they’d just accept that the private blood tests are legit, I can do those when I feel at my worst. But they won’t.

[gostiwooz]

Thank you, great advice.

I've been feeling like shit for the best part of 30 years, I've been to the doctors time and time again to be told there's nothing wrong with me. Well I've had enough.

I'm not going to give up this time.