I am posting this to my relevant communities in the hope that my symptoms are recognised by others & give me a clue as to what condition they possibly fall into.
I've had a bad few days with weakness, pain, fatigue, feeling dreadful (and more but can' t list all).
Getting to the point..... this 'crash' episode has included a constantly swollen & painful tongue, major gland swelling & discomfort throat, neck, armpit, chest/breast areas & feeling of breast fullness. Also on off spleen area pain.
Diagnosed with CFS/ME (specialist reported symptoms but much more over & above, FM, congenital half thyroid & micro pituitary adenoma. I also frequently have mass rashing front of neck & tiny bit over brow.
Is this familiar to anyone. So tired of being unwell.
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jellynpain
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I am sorry you are feeling so unwell. Your symptoms do sound hypothyroid and as you were born with half a thyroid you may not be producing enough hormones for your needs. If you haven't had a recent blood test for your thyroid hormones, ask for a full thyroid function test (, i.e. TSH, T4,T3, Free T4 and Free T3. It's the least you deserve although some labs don't do others if TSH is 'in range' but if they wont you may have to get a private test done. If your T3 is low you need to bring it up as that's the active hormone that drives our metabolism. You have already been diagnosed with CFS etc. I would assume that diagnoses is because your TSH didn't fit the bill for a diagnosis of hypothyroidism even though your clinical symptoms would have.
CFS/ME/FM were 'new' names given to symptoms around 10 years after the introduction of the blood tests for the thyroid gland. Previously doctors diagnosed on clinical symptoms and we were provided with Natural Thyroid Hormones.
If you haven't had your Vitamin B12, Vit D, iron, ferritin and folate tested, ask for these to be done at the same time as your thyroid hormones.
P.S swollen tongue is classic clinical symptom. Cursor down page to see picture:-
When you go for your thyroid hormone test and other blood tests, get it as early as possible as the TSH is highest then. After a few days ask the surgery for a print-out of your blood tests with the ranges and post on a new question for members to comment on them. Don't take medication until after your blood test, just in case it skews anything. We are entitled to our blood test results.
Hi jellynpain My diagnosis (so far) is sub-clinical hypothyroidism, some of my symptoms are similar, being worse on some days. I also have fibrocystic lumps (think that's right) which in me cause pain in "armpit, chest/breast areas & feeling of breast fullness" I was told by consultant to take 3 grams Evening Primrose Oil. (it does seem to get worse if I forget to take the EPO) I get strange things that come and go, I can't really help much other than commiserate and hope that someone else may have an idea.
I get fibrocystic lumps in my breasts too. Sometimes they hurt and sometimes they don't. I wasn't told to take anything by my consultant and he didn't even check my breasts the same way my GP did.
I wonder if fibrocystic breasts is all part of it. I'm on my fourth urgent breast referral. They are very good & thorough but each consultant is made aware of my symptoms overall yet none of them hook anything together. I recently told my gp everything needs looking at together for a clear picture, maybe get somewhere. X
Hi Jackie, Thanks for your reply. I have had the blood tests recently, only thing out of range was a very low Folate, TSH around 3.4 (sorry not got info in front ofme). I also have very swollen throat glands, saliva in mouth area swelling & redness andmouth ulcers. Do you know if this is part of the hypothyroidism with swollen tongue? Hope you have good day x
I certainly do not have enough information about it whatsoever, but I know that I have had some odd blood test results and polycythaemia is something that has cropped up in conversation. You said that you had some pain in the area of the spleen, which is why I have mentioned it because it is a symptom I was asked about.
Thanks BeansMummy. This cropped up when I searched re high red blood cells. I will bring this up with my gp. Was it a gp that mentioned this to you? My gp hasn't mentioned this blood result all year, not happy about that x
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