Hello all, I'm new here and am desperately seeking answers for my symptoms. I have lots of hypo symptoms but TSH always comes back normal. I have just had private tests through Blue Horizon and all results are within range, although FT3 and FT4 are both at or near the bottom of the range. Is secondary hypothyroidism possible even though they are not under range? TSH is about middle of range.
Hypo symptoms but 'normal' bloods : Hello all, I... - Thyroid UK
Patients used to be diagnosed through their clinical symptoms alone but, unfortunately, for us the 'experts' have dictated that only the TSH is the deciding factor.
This is a link which I think you'll find interesting.
(see remark re FT4 and FT3).
Have you ever had FT4 or FT3 tested by the NHS? If you haven't, then I think you should show your private test results to your GP and request a referral to an endocrinologist so that you can get tested for secondary (or central) hypothyroidism. Before you do this though, you might want to contact Louise Warvill and ask her to send you the list of "good" endocrinologists that she has, who are more likely to be helpful. Then decide which one you want to see and ask your GP to refer you to the endocrinologist of your choice. There is no reason for you to see anyone of your GP's choosing if you don't want to.
You can find Louise here - and you can send a private message to her through this link :
Another thing you could do...
Since you have clear evidence of a low thyroid problem, you may well be low in the usual minerals and vitamins, and getting them tested would be a good idea. Ask your GP for tests of vitamin D, vitamin B12, iron, ferritin and folate. Get a printout of the results including the reference ranges and post them on the forum. And get used to keeping records of all your blood tests from now on. Each time you get test results keep a note with them of things like your temperature, heart rate, blood pressure (if you have a monitor), and your symptoms at the time of the blood draw.
I realise you must feel awful. But don't despair, there is hope and you can feel better than you do.
For your reference, this is a link to the NICE Clinical Knowledge Summaries subject of hypothyroidism, and these particular pages mention secondary hypothyroidism. There isn't a lot of detail but there are several references to the subject and you will have to click on each of the tabs on the left hand side to find each one - I've just given you the first two references I came to :
The treatment for secondary hypothyroidism is replacement thyroid hormone, just as it is for primary hypothyroidism. The problem you are likely to have though is that doctors will assume you can be monitored by TSH. However if your pituitary is not firing on all cylinders this will be a disaster. So you will have to make sure that any doctor you deal with in future knows what type of hypothyroidism you have (I'm assuming you will get the appropriate diagnosis - fingers crossed!)
I'm assuming also, that you should be tested for deficiencies in other pituitary hormones. I hope it gets done, and any deficiencies are dealt with properly.
Thank you humanbean that is really helpful. I did get FT4 on the NHS after nagging for a while! That was about 6 weeks ago and results were TSH 2.69 and FT4 11.9. There was no mention of secondary hypothyroidism she just said they were normal and wants to diagnose CFS 😩 I have another appointment next Tuesday so I will ask for an endo referral. Hopefully there will be someone on the list not too far from me! I currently feel like I'm banging my head against a brick wall, but I doubt that's anything new to members on here!
Thanks again ☺
I do hope your GP doesn't throw a wobbly. Some of them have delicate little egos and don't like their diagnoses doubted.
I think the lesson that is studied hardest by doctors is how to fob off patients. They all seem to be so good at it. It's very hard for us as patients to be insistent when we feel so bad. But we have to learn how to be persistent and assertive if we want to get better. (I'm still not good at it!)
On what grounds does she want to 'diagnose' CFS? That is not a disease, it is a syndrome, and there is no test for it. A syndrome is a bunch of symptoms which must be caused by something (there are a few things that could cause it, including hypo) and therefore cannot be a 'diagnosis'. She's talking out of her hat! lol I would advise you not to accept that so-called 'diagnosis' because it will stick with you for life!
Well all the tests I've had so far are 'normal' so this is her answer to my symptoms! Don't worry, I'm not about to accept a diagnosis for an incurable illness - Doctor Google will be giving his thoughts on my condition at my next appointment, my printer will be getting a good workout over the next few days 😂