Hi, I've just been for the results of my Thyroid test results, I had a test 6 weeks ago and it was borderline 4.9 so had to wait 6 weeks for another test, today's was 4.7, the test I had done 6 weeks ago was completely by accident, done by a locum who said lets just test everything and see whats making my M.S play up.
When I went in today I explained that my mum had been borderline for at least 4 years and last year they put her on 50mcg levothyroxine I also explained my Aunt and Gran had really severe Hypothyroidism.
She then looked back through my notes and said how were you in 2007!!. That was one of my worst years, I went to bed on 24th October and spent the next year trying to get out of bed, this was before my M.S diagnosis and my Dr at the time (i remember it as clear as day) threw a leaflet across the desk at me told me it must be M.E go away and learn to pace as there was nothing he could do to help. She then told me that my Thyroid results then were worse than they are now, 5. something.
She said it looks like for some reason my Thyroid levels are fluctuating and have been for at least the last 12 years.
My head is in a complete spin, Have I just wasted the last 12 years crawling around, using my wheelchair, sleeping so much yet having periods when I feel absolutely fine, thinking it was my M.S when it was thyroid related, 12 years when I could have been working, not missing out on things, selling my horses, losing my job.
Have I even got M.S? I have lesions on my brain and I was diagnosed by lumber puncture and had oligoclonal bands.
Why didn't that Dr, tell me then about my thyroid result or keep an eye on it. I feel numb.I feel cheated out of all that time of feeling crap.
x
Written by
mrsdolittle
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I am really sorry you have had such a horrible journey. You may have had undiagnosed hypothyroidism (and I have to state I'm not medically qualified).
The big problem in the UK, is that doctors have been told not to diagnose until the TSH reaches 10. Whilst in other countries I believe it is 3+ with symptoms. I shall give you list of symptoms and tick off the ones you have.
I have read that many people were diagnosed with ME, Fibro and CFS (I believe sometime after blood tests were introduced) 'new diseases' because their TSH didn't high enough to be diagnosed with hypothyroidism.
Do you have blood tests for thyroid hormones at the earliest possible time? Fasting (you can drink water) and now you are taking thyroid hormones, allow a 24 hour gap between last dose and test and take afterwards.
GP should also test B12, Vit D, iron, ferritin and folate as deficiencies can also cause symptoms.
Your doctor should also have checked for thyroid antibodies which can circulate in our blood which would mean you'd have the commonest form of hypothyroidism, i.e. Autoimmune Thyroid Disease (also called hashimoto's).
A Full Thyroid Function Test (which is rarely taken) is:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
There are several labs that will do home finger pin-prick tests and many members have done so. If you decide to do so make sure you are well hydrated a couple of days before blood draw.
You do have MS - the lesions on the brain wouldn't be because of your thyroid issues.
I think it's likely you have e Hashimotos/autoimmune thyroid disease. Autoimmune diseases are more likely in those who already have autoimmune disease, so I think you've likely had Hashimotos for quite a while, and it's potentially then increased your likelihood of developing MS.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
This would give access to all your historic blood test results
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn't been tested yet
For example it's Absolutely essential to test both TPO and TG thyroid antibodies and vitamin D, folate, ferritin and B12
MS is autoimmune and highly likely you have autoimmune thyroid disease diagnosed by high thyroid antibodies. Especially with lots of close relatives with hypothyroidism
Low vitamin D is common with MS too - so this should be regularly tested
Thyroid levels- Bloods should be retested 6-8 weeks after each dose increase in Levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Ask GP to test thyroid antibodies and vitamin levels NOW, if not been done
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Come back with new post once you get vitamin and antibodies test results and ranges. Members can advise on next steps
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Surely I am hypothyroid? Very frustrated
I am new here
Thyroid levels confusion
Am I imaging things?
Help, feeling so despondent.
