My name is Helen I'm 36 and a war veteran with ptsd and chronic pain. I have been displaying symptoms of underactive and overactive thyroid, but mostly underactive for a few years now. Tests at my GP kept coming back either normal or completely off kilter. I've had the full round of tests with my endocardiologist at my local hospital and been told I'm normal nothing to worry about my GP is now of the opinion that I am manifesting these problems as part of my ptsd and chronic pain. I'm not convinced and not sure where to turn to now.
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Helenbolland
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Have you had thyroid antibodies tested? There are two types, Thyroid Peroxidase (TPO) and Thyroglobulin (TG). It's not often that TG antibodies are tested but your endo should hopefully be able to order them both of not already done.
Symptoms of both under and over active could mean autoimmune thyroid disease so it's worth checking.
I'm not sure what tests I've had done. GP said I had all she could give me and the consultant gave me full range of bloods then this one where I was injected with something and had to sit for an hour which I was told also came back normal.
Helen, as we're legally entitled to copies of our test results, ask your surgery for a print out of tests carried out, and ask if they have copies of any tests the hospital has done.
No-one can offer any guidance unless we have test results.
You can always do a private fingerprick test at home which covers all the thyroid tests including both types of antibodies, and if you do one that includes vitamins and minerals as well that gives a full picture. If you want to do that then two places are frequently used by members
The one where you were injected was probably a cortisol test, a short synacthen test I think. It's quite basic as far as I know, to get a picture of what's going on with adrenals then a 24 hour saliva test is better. But I think the best place to start is with the thyroid tests.
Had the same symptoms as yourself for many years. Mine turned out to be Hashimotos disease.
Inflammation of the thyroid gland, it's an autoimmune disorder. Instead of protecting your thyroid tissue, basically your immune cells attack it.
My hormone levels were good. It wasn't until i had my Anti TPO checked it was discovered. It's easy to check. It can start from high stress, I think were everything is working overtime. I believe this is how mine started.
If its diagnosed as this at least you'll at least have something to aim at and not feel as if you're going crazy as most of us do until its diagnosed..
True: I should probably point out to them that I only feel normal when shoving vitamin b complex magnesium lecithin and kelp down my throat. If I have to take those to feel normal then I surely can't be right. I hate medical stuff it took me 10 years to get diagnosed with ptsd and I had to go to town with that I don't want another fight but if it's what I need to be normal then so be it.
Helen, have you had a iodine test and been found deficient? If not then please don't use kelp. If you do have Hashimoto's (quite likely) then supplementing with iodine isn't a good idea as it can worsen the antibody attacks
Biotin in b multivitamins can cause false results in some lab tests so don't take for a couple of days before blood tests. If you can manage to get private blood tests done it would give a good picture of what may be going on. Cost £79 for one including TSH, FT4, FT3 ANTIBODIES, CRP, FERRITIN, FOLATE AND B12 and can be done at home by finger prick. Vitamin d is also important but can't I believe be done via finger prick when included with thyroid and vitamins for £99. If you want to go that route do new post asking for advise/info or look on Thyroid UK website private testing for info.
Helen, you can have private tests and bypass the GP and our members will diagnose them for you. Usually GP only does a TSH and maybe a T4 but rarely others. The TSH is from the pituitary gland which tries to flag the thyroid hormone into producing more hormones but doctors are unaware that TSH is highest early a.m. and drops throughout the day which could mean you can remain undiagnosed.
I shall give you recommended labs which do private tests and the most important are Free T4 and Free T3 and thyroid antibodies. It seems that antibodies are the commonest cause of hypothyroidism as they attack the gland until the person is hypothyroid. It is a big learning curve. Most are home pin-prick test which are also accurate.
First bloods have to be at the very earliest, fasting (you can drink water) and allow a 24 hour gap between last dose of thyroid hormone replacement (if taking any) and take it after test. Always get print-out of your blood tests with the ranges (ranges are important as labs differ) which makes it easier for members to respond.
GP should test B12, Vit D, iron, ferritin and folate as we are usually low which can also cause symptoms. Everything has to be optimum.
I am sorry it took so long for you to be diagnosed with ptsd. It is surprising that despite having clinical symptoms for it, they don't appear to go by symptoms nowadays.
As you say - sometimes your results were normal and at other times, 'off kilter' that could point to Hashimoto's (a form of hypothyroidism and the commonest). The following is an Autoimmune Thyroid Disease:-
Blood tests should always be at the earliest possible, fasting - you can drink water and allow a gap of approx 24 hours between your last dose of levothyroxine and test and take afterwards. This helps keep the TSH a its highest as that's mainly the only results doctors take notice of.
If you have antibodies it will confirm hashimoto's. Treatment is the same as for hypothyroidism. The antibodies attack the gland until person is hypothyroid but treatment is the same. Going gluten-free can help reduce the attacks.
Ask GP to also check B12, Vit D, iron, ferritin and folate - we need everything to be optimal.
When you have your thyroid levels check next (privately if you have the means or other) make sure to fast (water OK) beforehand. You will get the most accurate results then. And "normal" is thrown around here with derision! It is often reported here on the forum the same so-called "normal" results when in fact (for example) ones TSH levels are frighteningly high! No wonder thyroid disease and Hashimotos is so often undiagnosed for YEARS until the sufferer finally has their results discovered. And results are often posted here with levels far from optimal. There is so much utter cluelessness by the medical establishment with regard to the thyroid it is mind boggling! But do get those results posted here - and as a new post to avoid getting lost in the shuffle.
The following link to Thyroid UK can connect you with thyroid friendly private Drs by request I believe as I've seen the site referred to often here. Best of luck going forward. XX Rusty
Thank you so much! I wasn't advised to fast beforehand but will in the future. I'm going to save and get those tests you mentioned. My dietician had me tested for vitamin d and it came back low but I do live in Scotland so that's probably why.
Really important to have your Folate, Ferritin, Vit D, B12 tested along with thyroid antibodies and as you have PTSD I'd get your adrenals tested if they haven't already done this. I'd guess with all that stress they are bound to have been affected. My son was a marine and got a medical discharge after serving in Afghanistan, he was in a bad place for a while but then took a meditation course which helped enormously. I can get the details if you like? You in the UK? He still meditates now and finds it hugely beneficial. He also changed his diet which helped with stress and inflammation.
Bluehorizonmedicals.co.uk
Thyroid plus 11,12&15 are all good comprehensive tests and they also have a 24 hr saliva test for cortisol. Not cheap but worth it to get to the bottom of what's going on.
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Please get hold of your blood results (they are yours) and post on here and then any future results you get.
You could also try quitting gluten and dairy and eating more of a paleo diet for a while. Should help with stress and inflammation.
You could also try a good probiotic, one with multiple strains, I'm guessing your microbiome will be completely upset too.
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