I'm glad I've found this forum and hope that I can get some answers for some symptoms I've had in recent. So thank you in advance!
I have basically been suffering with fatigue for about 4 years now. Perhaps longer. I have been back and forth to the doctor's who have said that my blood test results were all normal and to not worry. They've suggested that it might be stress.
But I don't live a stressful life. I have recently moved into a wonderful new home with my best friends, and I'm very happy. I have a good relationship with my family and friends. However, I have found that my symptoms have gotten worse over the past 2 months. I'm seriously tired all the time (I sleep for about 9.5-10 hours per night but I do tend to wake up a lot). My legs feel really heavy. I feel like I haven't really slept at all most of the time. At night my legs feel restless.
Due to mu symptoms and fatigue I've been unable to work and I've taken time off. I have been feeling quite emotional (I tend to cry at pretty much anything). This month I've had two periods in the space of 3 weeks and I already feel like I have another period coming on (breasts feel tender and have enlarged).
I thought I had anaemia because under my eyes is very pale/white. I have been experiencing tremors more recently, as well as random pains in my throat.
I have ADHD so I've always found it difficult to concentrate, but at the moment my concentration and memory is particularly bad. If you've ever gone into a room in your house and forgotten what you went in there to do - I have that experience about 5-6 times per day. Maybe even more.
My mother, aunt and grandmother all have Thyroid disease so it's pretty alive in my family.
The doctors still don't want to do any further examinations on the issue as my blood tests have tended to come up as normal. However today I received results that said that my Mean Corpuscular Volume is 100.8 which is above the range they have set of 77-95.00. So they're going to run another test just to see if it's not random.
I found out that your MCV (mean corpuscular vol) is linked with B12 deficiency and potentially hypothyroidism.
My thyroid function test came out as so:
Serum TSH level = 0.84 (range = 0.3 - 5.50)
Serum free T3 level = 12.5 (range= 9.0 - 25.00)
Does anyone have any suggestions about these results and what I could do next? Going for another blood test now
Anything would be amazing!
Stephanie xxx
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stephskarbek
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Your symptoms could certainly be due to low thyroid - and your FT4 is very low. But, unfortunately, doctors only tend to look at the TSH (which is very ignorant of them) and don't do all the right tests. Would you be in a position to get private testing done? What you need are:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
That will give you a far clearer picture of what's going on than just a TSH and FT4. But, the NHS, in all it's wisdom, won't do most of them.
Well, they're both quite low. B12 should be at least over 550. And ferritin at least over 72 - but better half way in range. When were they done? They could have got lower, since.
Only go straight to see and endo if you know of a really good one. Most endos are diabetes specialists and know very little about thyroid. Thyroid specialists are rare.
The only endocrine specialist I know is in Paris, if you fancy a trip.
It's doubtful if even an endo would do all the necessary tests, because they just don't understand thyroid that well. So, maybe best to do your own. Up to you.
Hey Louise - I'm usually not woken up by my breathing. It's more my temperature or my restless legs. I always feel really awake but exhausted at the same time.
I don’t wake up most of the time either.. but my brain is constantly on as a result so that’s what causes my symptoms.. it’s very common with hypothyroidism apparently
Did they test folate as well as B12? It does sound like macrocytosis (big blood cells) so it might be that folate is very low. Plus you can have symptoms of low B12 when levels fall below 500 (the U.K. lab ranges for B12 levels are plain daft).
Hey - they didn't. But thanks so much for mentioning I'll ask my GP about Folate.
I'll second that, the raised MCV does sound like pernicious anaemia. This will also affect your nerves. It could also be some other endocrine problem not just thyroid or diabetes. Sleep apnoea may also be a coincidental issue.
Apart from the ones I’ve told you above, I’ve noticed a big change in my face. The bags under my eyes are enlargened and really dark and my skin is super super dry. I have also put on weight. Today I also feel like I’m about to get another period (3rd in a month)
I’ve also had a heart arythmia for about 8 years now that I’ve had checked at a cardiologist. They said it was benign but didn’t know where it was coming from. It gets super bad if I’ve been drinking and I can almost feel faint. But I haven’t been drinking or having any late nights or early starts for a while so that has gone down a lot (I’ve been taking it very easy).
I’m going to speak to my doctor today about getting the full range of bloods done and hopefully have an apppintment booked with the endocrinologist soon.
What is pernicious anaemia?
Thanks!
You definitely have several problems. The face changes and weight gain could be thyroid related. The period disturbances is hormonal although not necessarily related to the thyroid.
The arrhythmia sounds a separate issue, but could be related. What kind of arrhythmia is it, do you have palpitations?
Good idea to see an endocrinologist
Pernicious anaemia is due to a lack of Bit B12 and or folate
They are both needed for the development of normal red. Blood cells. RECs. With this lack RBCs may develop in sufficient numbers but don't fully develop. They are too LARGE. Hence raised MCV. They don't work properly and can't carry oxygen very well - Hence anaemia. Strictly speaking it's "macrocytic" anaemia (large cell). Whereas pernicious anaemia is due to a problem in digesting B12, there are other causes of large cell anaemia
Pernicious Anaemia is an auto-immune condition that affects the gut and particularly affects the mechanism that allows most of your B12 to be absorbed in the ileum.
As most folate is also absorbed in the ileum, it can also affect absorption of folate.
Folate and B12 are involved in regulating the mechanism that produces healthy red blood cells deficiencies of either will eventually result in red blood cells being larger and rounder than they should be.
Macrocytic anaemias are symptoms of B12 and folate deficiencies, but they are far from being the only symptoms as both B12 and folate (B9) are used for a number of key processes that go on in your cells, leading to a myriad of symptoms that are totally unrelated to anaemia.
Pernicious anaemia is an historic misnomer, due to the fact that its affects were first observed as a specific type of anaemia that was associated with patients going on to develop neurological problems and then dying. This was a long time before the actual cause was identified ... and about 200 years before B12 was actually identified.
25% of patients with B12 deficiency caused by PA or another B12 absorption issue, do not have any signs of anaemia when they first present.
Hi All - so I've had 3 blood tests now to get some more info. I've had two at the HNS and one at Medichecks.
All have come back as 'normal' but I wanted to check with you clever lot before I just gave in to the idea that all these symptoms are imaginary (lol).
I had two at the NHS because my MCV was 100.8 in the first count. My MCV came up as 101.7, so again high, in the second. I had both of these in the afternoon when I was feeling my worst.
I then had a test done in the morning at the private clinic when my symptoms were much less acute. They are always less acute in the morning for some reason.
I have written a description of my hormone levels below:
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