Can't match a diagnosis to my symptoms. - Thyroid UK

Thyroid UK
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Can't match a diagnosis to my symptoms.

Hi there, I have been suffering for many symptoms for months that point towards hypothyroidism. I had elevated tsh levels of 3.9 and another one which was 'borderline' but since then I had more tests done but unfortunately they were inconclusive. My TSH this time was 2.5 and my free T4 and Free T3 were slightly over half-way up the range. I still experience loads of symptoms and it is getting unbearable right now.

Thinning, Brittle hair.

Whole body is swollen.

Breathlessness.

Poor memory.

Muscle weakness.

Puffy face.

Extreme tiredness.

Anyone have any ideas about what could be causing my symptoms? I really don't know what to do atm and it's making it near impossible to attend my lectures :(

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B0896 To compare thyroid tests, particularly the TSH, then they need to be done under the same circumstances each time ie first thing in the morning (earliest appointment of the day) and fast overnight (water only, breakfast when you get home). This gives the highest TSH when looking for a diagnosis. Were both tests done at the same time?

Unfortunately, your highest TSH is nowhere near the level needed for a diagnosis, it would need to be over range and possibly reach 10 to satisfy the guidelines.

There is a possibility that could could have autoimmune thyroid disease, aka Hashimoto's, where levels do fluctuate. You could ask your GP to test antibodies but the NHS only test Thyroid Peroxidase antibodies and there is another one called Thyroglobulin antibodies. You could have either or both of these. As the NHS doesn't test TG antibodies you could have them and have Hashi's but wouldn't get it confirmed on the NHS.

If you test positive for Hashi's then an enlightened GP would start you on Levo to 'nip things in the bud'.

You could get tested privately with a fingerprick test for antibodies, the best way is probably part of a bundle from Blue Horizon. You can have their Thyroid Plus Six which does all the thyroid tests plus both types of antibodies bluehorizonmedicals.co.uk/P... but for an extra £30 you could get all those plus all important vitamin and minerals tested with Thyroid Plus Eleven bluehorizonmedicals.co.uk/e... which is the one frequently recommended here as low levels of vitamins and minerals can cause symptoms too. Your thinning, brittle hair, extreme tiredness and muscle weakness do point to some low levels so it would be worth you doing the Plus Eleven.

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Hi, have you actually done the blue horizon tests

Am considering it. I have a private appt on 6th Jan with a special isn't in thyroid problems, but have been told maybe I need an endocrinologist. Who knows, I will probably have to pay for both? Merry Christmas everyone.x

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Elizabethanerea, yes I have done a few BH tests. Best value is to get the Plus 11 so you have all important vitamins and minerals as well as all thyroid tests including both types of antibodies.

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You need to get your antibodies tested. You could have Hashi's.

Were all your tests done at the same time of day, and fasting?

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I did one antibody test a while ago which I was told was negative. I took the test at 8:30 am and made sure to fast as well. I am very surprised as my Tsh was quite high before and i have classic symptoms, but everything seems in order with the recent results. Maybe it would be worth dong the other antibody test?

This is all confusing as my symptoms show something is going on, but I haven't had any luck finding what that is:/

My ferritin and vitamin d levels were also normal .

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It would indeed be worth doing the other antibody test. Not only that, but one negative test does not completely rule out Hashi's, because antibodies fluctuate.

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"My ferritin and vitamin d levels were also normal ."

What is normal? Who said they were normal? They need to be optimal. Post the results with reference ranges and we can tell you if they are optimal.

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Is it significant that the TSH was 3.9 and borderline (not sure the exact score) the last two tests? Will look into doing the tests for antibodies as I was only tested just the once. It still feels like its related to my thyroid despite the last tests, but obviously I cant tell for sure.

Thanks a lot for the advice!

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Our guidelines for diagnosis in the UK is barbaric - TSH to reach 10 before being diagnosed!!

This is a link from our 'parent' website Thyroiduk.org.uk and I think you'll be enlightened.

thyroiduk.org.uk/tuk/testin...

You will notice the remarks about TSH at the bottom.

thyroiduk.org.uk/tuk/testin...

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Could be low cortisol, low ferritin or food sensitivities (or a combination):

thyroidpharmacist.com/artic...

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Anti-inflammatory foods helped with the swelling. Exercise also seems to help instantly! And gets rid of the flushed look i have chronically. Any ideas what this could suggest? I tested negative for celiac. However the drastic hair changes and poor memory leave me confused

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A negative test for celiac (which test(s) did you have?) does not guarantee that you do not have gluten sensitivity.

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Oh and I forgot to mention that when the swelling alleviates I can breathe perfectly. So that seems to be a major issue

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Sounds like you have non-celiac gluten sensitivity, very common here. You may have other food intolerances as well so worth doing an elimination diet or Paleo autoimmune protocol to try to identify them:

thepaleomom.com/start-here/...

Is your ferritin over 70?

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Can low cortisol cause hypothyroidism symptoms with otherwise good results? Since I have had bad sleep patterns and have been under a lot of stress for a few years. Maybe I should look at other hormones as well?

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I tried eliminating gluten for a few weeks and it seemed to increase the regularity of my symptoms going. But they always came back the next day and I saw no permanent changes.

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The hair changes were especially confusing. My hair became incredibly thick and brittle over months (used to have really really fine hair). And then it suddenly became thick and brittle but very sparse :/ That seemed to indicate thyroid issues at the time.

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Do you take your temperature every morinig begore you get out of bed (a Mercury thermometer is best). Normal is 37°C/98.6°F. Anything below 36.6°C/98° 'can' indicate hypothyroidism.

The TSH test isn't always a good indicator. I'm hypothyroidism and if my TSH goes above 2, I feel appalling. I had a head injury years ago, with suspected pituitary damage, so my TSH doesn't function as it should.

If excersice helps with puffiness, it could suggest sluggish lymph function. Giving yourself a good scrub with a loofah in the bath can also help to boost lymph function.

Excersise also boosts production of endorphins, which really help with autoimmune issues (check out Low Dose Naltrexone)

Swelling/puffiness can be associated with heart issues (not saying this is what you have). Have you had B12, folate and homocysteine levels checked. Hypothyroidism can also cause heart problems.

Also have you had hyperparathyroidism ruled out? It's less common than hypothyroidism, but a lot of the symptoms are the same.

parathyroid.com/parathyroid...

Hope this helps

Xx

P.S. another supplement that's great to help with energy is co-enzyme Q10. I've read that if this helps, it can suggest that you are low in Selenium. It's also very good for heart health.

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Ah that is very interesting. My temperature was measured at 35.7c but i was told it was normal. (Unless i heard wrong). I was starting to wonder if i had thyroid hormone resistance as looking back I have had symptoms for many years, and my mum also has undiagnosed symptoms and myxoedema on her arms as well as hives. It does seem strange that my TSH is high in the normal range while my Free T3/4 are also high normal. My edema is non pitting and is thick and 'spongey' which also made me feel my thyroid was responsible.

I think the doctor checked my heart and lymph system and said it was fine, and even considered a second opinion regarding a trial of thyroxine despite my results so i must be symptomatic of hypo on some level.

I haven't looked at hyperparathyroidism but will check that out for sure. Thank you so much for all your help!

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