Hi everyone - thought it was high time I joined here as no idea where to turn and feel so confused.
Had underactive thyroid diagnosed 11 years ago and been on Levo for the same time, but this year something has made it go wrong. Had a virus nearly 7 months now and various tests which come back normal - had 2 scans and both ruled out cancer.
My bloods come back 0.26 for TSH and 18 for T4. The doctors say this is normal. But my scan showed a "very small thyroid" which means it's underactive, and the nurse seemed surprised that I was on medication.
Has this happened to anyone else? I have the worst anxiety, a constricted throat and chest (it's not asthma as my inhalers do nothing for this), and I am scared if I have Addison's disease.
Thank you for reading and I would appreciate any help - has anyone else had this?
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DeeFish71
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Do you have reference ranges for the tests? The reference ranges change from place to place, so T4 can have a range of 12-19 in one instance (in which case your number is fine) but it could be 17-26 somewhere else, in which case your number would be too low.
I would suggest carrying out your own private tests to check for antibodies and T3. If you have antibodies, it means your thyroid issues are due to autoimmune disease, which I think could explain some of your symptoms.
It's worth paying a little extra to get vitamins tested too (B12, vit D, ferritin and folate).
But my scan showed a "very small thyroid" which means it's underactive, and the nurse seemed surprised that I was on medication.
I don't understand that. If the nurse knew that a small thyroid meant it was under-active, why was she surprised that you were on medication? That's what happens when you're under-active.
A small thyroid like that probably means that you have Autoimmune Thyroiditis - universally known as Hashi's, except in the UK, but technically more likely to be Ord's (Hashi's without the goitre). But, it would be a good idea to get antibodies tested to make sure.
Also, just testing TSH and FT4 is not adequate. It could be that although your FT4 looks good (range, please!) you are not converting all that T4 into T3. But, you can't know that without getting your FT4 and FT3 tested at the same time.
Why do you think you might have Addison's? Have you ever had a cortisol test?
Forget the word 'normal'. It has no real meaning. When a doctor says 'normal', all he means is 'in-range'. But, it's where results fall in the range that counts. And, if you don't feel 'normal', then they can't be 'normal' for you, can they?
The only way to know if you have Addison's disease is to have your cortisol levels checked. But, since it's a serious and potentially fatal disease, I'm surprised your doctor has not ordered such tests already. You do mean Addison's disease, as in adrenal insufficiency, right, not just adrenal fatigue which many doctors are not familiar with? The latter is common in people who have lived with hypothyroidism for years, the former is an endocrine disease requiring life-long cortisone replacement therapy since Addison's disease means the adrenal glands stop working (unlike adrenal fatigue where they may not produce optimal amounts of cortisol, but still enough to sustain life).
I agree with Greygoose that you need to have your FT3 levels tested and also that the nurse's comment was very strange as people with an under active thyroid usually are on thyroid hormone replacement...!
Thanks for your replies. The lady who did my scan would not have known that I was on Levo at all, and possibly thought that I needed to be on it. My doctors are useless - there is one in that surgery who has tried to help and pushed for tests and only recently has been concerned about my fluctuating blood tests for thyroid. I did specifically ask for T3 to be tested - but they haven't done this at all, apparently they don't do this in the UK as it's too expensive, so it's always just T4 and TSH. As for going private, I just cannot afford that. I am hoping once the results of the scan are sent to the doctors, that I can get appointment with the nice doctor there, but it's very hard to, I have had countless locums who don't even bother to read my notes on file, and had to relay all the symptoms over and again which leaves me frustrated and like I am not believed. I have had appointments where it's been written off as anxiety - who wouldn't be when can't shake off what was a cold/chest infection? Some thought it was silent reflux - the ENT doctor ruled that out. I have been on omeprazole which did nothing for me. I think the problems began with the doxycycline that I was given for a week in April. I took the meds correctly (not laying down after taking them). I have also been up A&E twice in this time, as had what I thought was a heart attack (they said that was pleurisy), and such severe pains under my ribs, which they diagnosed as costacondritis. I am still getting this pain now. Had scans on my ribs and they found 3 small gallstones, but nothing has been mentioned about these at all. Sorry to ramble on, but I want a referral to endocronology to see if could be a problem with my adrenal glands.
My surgery does T3, your GP will have to write in the box to the Lab why he wants T3 tested, Ie still Hypo symptoms on meds, if he doesnt write why they want it tested the lab wont do it..
My surgery also will do all vitamins, so I would ask 1st before paying out money for all the tests.. I
f the lab doesnt do it when GP has requested it, ( the lab keep blood samples for over a week so your GP can call lab up and confirm he wanted it tested..)
I was told all this info from the path lab as once the didnt do my T3, so I called Lab direct and they told me thats how it works, as needs the lab consultant to ok the T3 being tested... So they can do it they just try to avoid doing it, not sure why as is about £1.30 so not an expensive test good luck ..
They wont do reverse T3 in primary but they can do FT3
Any blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water). If you were taking thyroid hormones you'd allow a gap of 24 hours from last dose and take after test.
Addisons is as above diagnosed through serum cortisol test.. this should be done as early as possible 9am being the latest most surgerys open at 8.30am so get an early appointment with that and should go to the lab on ice then if its low they will refer you to an Endo for further testing.
Will try to get the Doctors to do that for me next week - my results from the scan won't be due back until Friday and we are off for a little weekend break that has been booked for ages. I hope I can be up early - I am terrible getting up in the mornings!
Has any doctor suspected Addison's disease? The symptoms you mention could be due to other things. Also, people with hypothyroidism don't usually develop Addison's disease as a result of their thyroid dysfunction nor have I heard of thyroid patients being routinely screened for it. So what makes you suspect you have Addison's?
I am terrible for Googling symptoms which I know isn't great, but its the fact I was ill with a virus and read that with so called normal blood tests but a small thyroid, the thyroid can be attacked by whatever virus this was. I am sorry I cannot think straight or put my words onto a screen easily, but at the moment as I type this, I am feeling exhausted but my heart is racing and so is my mind. I wish the Doctors had made the connection with the thyroid months ago, instead of sending me away with "possible glandular fever", " possibly reflux", and just leaving this to get worse. I have been worse this last 4 weeks, thought it was just the stress of getting blood tests and scan moved forward as cannot keep waiting the ludicrous times they give me (another 6 weeks), and wanted my mind put at rest about cancer, but I cannot seem to control my emotions and this stupid anxiety.
Many people with autoimmune thyroid disease have shrunken and shrivelled thyroid. This is technically called ord's Thyroiditis (Hashimoto's is autoimmune thyroid disease that causes goitre)
Low vitamins can cause symptoms too and are extremely common when hypothyroid
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 before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
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
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 primary 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 .
thank you for that - very informative. Will reply once gone back to doctors and see what they suggest, I do wish they would test T3 though, and all the vitamin ones. I do take a multivitamin every evening, but not sure how well that does.
There are over 102,000 members on here.......if they actually tested FT3 routinely and looked at FT3 and FT4 over and above TsH there might be a lot fewer people struggling to get correct treatment
Vast majority of patients in Uk forced to test privately
It's very likely that that doesn't do well at all! For all sorts of reasons:
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results.
May not have caused you any problems, but how do you know? How do you know that all that iodine hasn't exacerbated your thyroid condition? Or that the calcium isn't building up in your soft tissues?
But, even if it hasn't done you any harm, it won't have done you much good if there's iron in it, because you won't have absorbed any of the vitamins. So, you've just been wasting your money.
There isn't iron in the ones I have. I had no problems before this virus and all the antibiotics, painkillers, omeprazole. I have had various illnesses and viruses but always shook them off. This time it's different as been "diagnosed" with things I never had. I appreciate your advice, but I blame these different meds I have been given over the last 6 months and something has reacted badly. I have lost half a stone without even trying, and the anxiety has played a big part in it, but I will get back to the doctors and see how they tell me to proceed next.
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