Where do I go from here?: Have been feeling... - Thyroid UK

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Where do I go from here?

Clarity1971 profile image
8 Replies

Have been feeling unwell for a long time. More noticeably for about 8 weeks but in reality I'd say I have been struggling with tiredness for several years.

In recent weeks I have been suffering from dizzy spells, restless legs, palpitations, double vision, slurred speech, extreme tiredness and weakness, skin and hair problems and insomnia.

Went to GP for full blood screening - they said all results 'normal' apart from ferritin which was 10. So I have been started on iron tablets and now the waiting game commences for iron levels to return to normal.

I decided though to request a print out of the rest of my blood results, even though they said the rest were normal, I still wanted to have a look myself.

My TSH is 3.0 but according to print out this is within normal range of 0.35 to 6.9.

However after doing bit more research online my TSH is borderline high and could be indicative of hypothyroidism.

No other test were carried out for thyroid that I could see, just TSH ( unless T4 and T3 have another name?)

Is my TSH too high? My GP seemed utterly uninterested and given that they are going with a upper range of 6.9 is there any point me trying to push for further investigations?

If I was well then I wouldn't bother but I am really struggling and not sure what to do next?

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Clarity1971
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8 Replies
Jackie profile image
Jackie

Hi You need ,also T4 test and an Free T3. GP often does not do them now, costs! Use blue horizon, as I do, quote TUK 10 for a discount, finger prick test is easiest and all do it yourself. results, there is a letter from their Harley st doc if way out. Anyway if out, ranges, then take to GP. They normally recognize Blue horizon as it is the Lab most private hospital use, a lot cheaper on line.

If this does not find anything. Do ask for a GOOD cardio referral, just to make sure. There is a close relationship thyroid to heart.Good docs know this. iron etc all endo. If having a referral , search yourself and find a good one before asking GP.

be sure to have tests for u`s and E`s, kidney function, also calcium and vit D,magnesium.

Best wishes,

Jackie

sip1 profile image
sip1

Your TSH is very similar to mine, as are your symptoms. I did my own tests and took them into my doctors - although he said they were normal, he did refer me to see an endocrinologist but he came to the conclusion that I have Chronic Fatigue Syndrome. I passionately oppose this diagnosis, as I know I am hypothyroid from my symptoms alone.

I'd definitely recommend doing your own test from Blue Horizon to check your thyroid and antibodies, and also a separate test from Genova to check your adrenals, as you may also have adrenal fatigue which will need to be dealt with before taking any thyroid medication.

Be prepared to get nowhere with your doctor or endo - I'm having no choice but to self treat as I cannot find a doctor that looks at symptoms and doesn't rely totally on lab tests and figures!

You should also insist that your doctor figure out why your iron is so low. Unless you eat a very low iron diet, you should not have low iron unless there is a cause. Thyroid autoimmune and Celiac go together, and the hallmark of Celiac is low iron. Even with gluten intolerance without full blown Celiac you can have malabsorption. And any good doctor now knows that 2 is about as high as TSH should go. Above that, hypo should be suspected. When my TSH is at anything over 1 I am horribly hypo. Remind your doctor that a size small shoe is normal but that doesn't mean it will fit a size large foot. Same is true for "normal" thyroid ranges. Your symptoms sound very hypo.

Marylyn profile image
Marylyn

I would be asking for Serum Vitamin B12 it can be a very slow illness with many symptons passed off as anxiety,stress,depression.google VitB12 deficiency treatment protocol read print off.good luck it took me 6 mths to get diagnosed even with 25 symptons.

Hi Clarity 1971, I had incredibly bad palps from low thyroxine, as soon as I was on a high enough dose they just about went. I'm anaemic in folate, iron and B12 and have treatment for all, I've noticed my heart is calmer.

I got treated on a TSH of 5, but my T4 was only 13, and my cholesterol raised, which is another symptom of hypothyroidism. My antibodies were negative at first, but a year later high at 600 odd, so now I know it's hashimotos. I think being hypo makes your stomach less acidic so you absorb nutrients less. You ferritin should be at least 80, your B12 getting on for 900, and your folate at least 12.

I agree get a proper thyroid test privately if you have to. Also take your morning temps before you get out of bed. If they are in the 35/36's this can indicate poor thyroid function.

Clarity1971 profile image
Clarity1971

Thank you for your help everyone, I will make another appointment and try and press for further tests. I am fortunate enough to have the option to go privately through work if I need to but really can't cope with a battle on my hands.

Is there a blood test for Coeliacs? Or does it have to be a biopsy/endo? I do have Coeliacs in the family but not close relatives, just aunts and cousins.

Sip1 - sorry to hear of your experiences - can I ask how you self treat?

You can get a list of good doctors via this website if you are thinking of paying to see someone. I pay despite being on employment and support allowance because I have had thirty years of GP@s denying that I am hypo when I obviously am. I might self treat independantly but I am fairy new to treatment and there seem to be a lot of reasons why thyroxine might not work very well, like low iron or B12 so I need some medical support at moment.

Clarity1971 profile image
Clarity1971

Thank you - can someone link to the GP list? I'm gong to try my own GP first but if no joy will go privately.

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