I posted an intro message the other day to say hi as i am new to all this.
I am currently awaiting results of a pituitary MRI and referrals to a sleep clinic, cognitive assessment and some cardiology tests as my potential hypo was found as a result of looking at other issues.
In relation to the hypo, my endo has pretty much said i will just be reviewed by him (my TPO was in the 70s) as i am likely to go full blown hypo at some point (TSH is hovering around 6 which is just on their high end of what they will treat) and as such, am not getting any treatment. They havnt tested for the other antibodies or T3 so i am going to do that myself.
I am looking to pay for my own tests for a few things to try and get things moving and be able to go into the GP armed with figures. I am suffering horrifically and can't go on with this 'wait and see' approach. I've been off work for 3 weeks and can't carry on like this and am a newly wed whose husband has basically become her carer because im unfit for anything.
I am after some advice on which bloods i should be getting so that I can get a rounded idea and not miss anything important. So far I have the following list
- Full thyroid, TSH, FT3 and FT4 plus both sets of antibodies
- Vit D and B12
- Ferratin (I had elevated levels on last test)
- Prolactin (numerous raised and fluctuating levels on tests)
- ANA (because of my symptoms and other issues I'm pretty convinced I may be suffering with some overarching autoimmune problem that's causing all this. I'm aware ANA results can't point to which condition, but may help me show if there is an autoimmune disease)
- I'm also looking at potentially having adrenal levels checked but don't know a great deal about these if anyone can advise.
Thanks for your help xxx
Written by
Lyris83
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If you have high TPO antibodies, then you do have an autoimmune disease: Hashimoto's Thyroiditis. The other antibodies don't have to be high to prove it.
If you're testing vit B12, you also need to test folate.
How many TSH tests have you had? If the 6 result was the first one, it is normal proceedure to wait a couple of months and retest to make sure that the high TSH wasn't caused by a temporary infection of something. If the second test comes back at 6 you are hypo. I've never seen a range that went up to 6. You are hypo with a TSH of 3.
I've had 3 tests all between 5.6 and 6 for TSH. Latest one was last week and was the 5.6
MRI is because i have a pre-existing condition where i have too much spinal fluid around the brain which causes horrific headaches, issues with the eyes and a load of other things. I've had numerous high followed by normal prolactin readings for years. Last one I had a couple of weeks ago was just under 1000. As such, endo agreed to do a pituitary MRI to check for tumour and or empty sella syndrome (basically the excess fluid squashes my pituitary)
I kinda feel like my whole endo system is crashing which is why I was looking to check adrenals too. Plus I'm having pain in my right flank constantly so worried if there's something going on there.
If you have a pituitary problem, it very possible that your TSH can't rise and they shouldn't be assessing on your TSH but on your actual thyroid hormones. Central hypothyroidism
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 tests are best done as early as possible in morning and fasting . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
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
Your 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.
You are not "Potentially" hypo, you ARE hypothyroid, whatever the official reference range is claimed to be! Ask for a "Clinical trial" of Levothyroxine.
My highest measured TSH was just under 6 and I still felt quite unwell when Levo got it down to just under 3. Thankfully I was given an increase that time. I'm still not 100% but at least have a life again.
You may find that some of your other problems decrease as a result, though it is a long slow process with thyroid treatment, and you may well get worse before getting better.
As others have said, you need to get vitamins and minerals optimal as well.
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