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Can anyone tell me what I should get tested for? Extreme tiredness, low blood pressure, prone to anaemia, etc etc

30 replies

AnnieBeeBee · 23/07/2016 20:54

I’m pregnant, and finding it much, MUCH harder than I did last time, so I wanted to speak to the doctor about testing me for something meaningfully.

Before I got pregnant, I felt pretty crappy and was convinced there was something up with me - I was just utterly exhausted all the time. I even paid a fortune for a 360 health check (which actually was the waste of money people warned me it would be - they didn’t test for anything my GP didn’t test for).

I am pretty sure my GP thought I was a hypochondriac, I was actually getting embarrassed to go so I stopped. But I know that what I was feeling - and am now - isn't how I feel when I'm my normal self.

In hindsight, I probably should have figured it out before getting pregnant, but really wanted another DC sooner rather than later because of mine and other DC's age (I'm 35, DC1 is 2) and DH and I always planned for 3 DCs (not sure my body can take another pregnancy after this one now though!).

I really want to try and find out what’s up before the baby comes so I’ve the energy to be a good mum! And for breastfeeding, etc.

I’d like to get more specific with my requests to test for stuff. I wondered if anyone had any advice on what I should ask to get tested for?

My symptoms:

Utter exhaustion. Low blood pressure. Anaemia and Vit b12 v low (previously deficient, borderline now). Low mood to the point of depression/anxiety. Heart palpitations. Constant "tight" feeling in my body, especially around my chest. Tired when walking for longer than 15/20mins - I have to lie down! Weight gain (more so than last pregnancy despite my lifestyle and diet being basically the same - exercise being less because of my tiredness though). Waking with a swollen face sometimes. Hair greying faster than ever (though I am 35! And quite happy to believe this one would actually happen anyway!! Thought I'd chuck it in there anyway). Bleeding gums/gum disease despite good dental care.

DESPITE: religiously taking vitamins (and ones recommended by a nutrionist). Eating incredibly well (lots of balance: protein, fresh fruit and veg, hardly any processed food, homemade stuff, etc etc). Exercising 2-3 times a week (yoga and a personal trainer, both appropriate for pregnancy. But not able to do all I used to and am utterly wiped for the rest of the day when I do the exercise - but am determined to keep it up, it must help??). Getting at least 8hrs a sleep a night, unbroken, plus a nap when DC naps.

I don't have: a thyroid problem. Coeliac disease. Pernicious anemia. (These have been tested for already.)

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Backingvocals · 23/07/2016 21:00

I have all the above and I do have a thyroid condition. Can you post your blood test results as GPs can dismiss as normal a thyroid count that is not really ok.

I had horrible low bp when pregnant. 90/50. I have never felt worse. The exhaustion was unreal. That is a symptom of pg though. My bp is now low but normal. So don't underestimate how dreadful a pregnancy can make you feel.

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AnnieBeeBee · 23/07/2016 21:42

Yes my BP is about that low at its worst, Backingvocals! You think that might be enough to wipe me out?

The GP never gave me my blood test results on paper, just let me peer at them over on his screen, so I don't know my thyroid. He just said "normal". I made a mental note of my B12 and iron, but nothing else. To be honest, GP also told me B12 and Iron were nothing to worry about - I googled and found them both to be quite low, though. (About two months before I got pregnant, my B12 was 114 and my iron was 11 so I found a nutritionist and started taking supplements.)

What sort of thyroid results should I be looking for? I will get them to retest, if I can persuade... my midwives at hospital are lovely. They may agree to have that blood test ordered.

Did you feel better after pregnancy and your blood pressure returned to normal, backingvocals?

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BluePitchFork · 23/07/2016 21:47

how has coeliacs been tested? the blood test can show false negative.
do you know the numbers/measurements of the thyroid tests?

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AveEldon · 23/07/2016 21:49

why is your B12 low if you don't have Pernicious Anaemia? Are you veggie/vegan? What tests did they do?

Thyroid - TSH should be under 2 for pregnancy. Sorry but I can't find the NHS link right now with the reference ranges

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HowsAnnie · 23/07/2016 21:53

Ah pretty much have the above symptoms all the time and I have PoTs, which got worse along with an iron deficiency when I was pregnant. It's still pretty unheard of but loads of HCP's are slowly starting to hear about it particularly in the city I live in as we have a clinic for it here.
May be worth thinking about?

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Backingvocals · 23/07/2016 21:54

BP that low will make you feel awful. Mine is now usually 100/70 so on the low side but fine. I do generally have low energy but not so I can't function as it was during pg.

Definitely get them to test for thyroid again or ask the surgery for a print out of the last results. I always do this anyway. TSH should be under two but some GPs wrongly think under 4 is ok.

Thyroid probs can prevent you absorbing nutrients properly hence anaemia etc.

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FoofFighter · 23/07/2016 21:56

if your b12 is that low and not caused by diet (vegan for instance) then you need to be given b12 jabs, probably for life. I don't know shedloads about it, having jsut been told have Pernicious Anaemia, but my GP on hol so am learning all I can on google :/

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FoofFighter · 23/07/2016 21:58

Howsannie what is PoTs please?

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AnnieBeeBee · 23/07/2016 22:03

Bluepitchfork - coeliac was just tested via a blood test. I do actually have a problem with gluten so, in this pregnancy, have been living without any gluten and it hasn't changed how I feel.

AveEldon - I wasn't actually tested for pernicious anemia as such, but my GP said it wasn't possible for me to have it based on my levels. I don't know if that's true? He was starting to get a bit dismissive of me towards the end. I honestly got embarrassed about going - hence paying for the 360. But I didn't bring up pernicious anemia, or thyroid, as I sort of just thought of them as being ruled out.

HowsAnnie - what is PoTs? I will google!!

Backingvocals - thank you! I am definitely going to ask if they can give me my old results / perhaps even test again. I didn't realise having a thyroid problem stopped you from absorbing vits properly. And thyroid stuff does run in my family.

FoofFighter - I am not a vegan, but I am a pesicatarian. I do eat at least one egg a day though! Are the tablets not as good as the jabs? My GP didn't offer anything. Didn't even really think my levels were a problem.

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OneMoreForExtra · 23/07/2016 22:05

Google Stop The Thyroid Madness, the website is good and the book is better. Sounds like a very high chance you have undiagnosed thyroid problems, which is very common for 2 reasons:

The NHS tests TSH (thyroid stimulating hormone) and T4 (the main thyroid hormone), which broadly tests whether your brain is talking to your thyroid and if your thyroid is responding. But these can both be fine and there can be problems elsewhere, eg thyroid turning into the active formfrom T4, or getting into the cells so they can work

Plus, the 'normal' range you're tested within is do wide that you can be showing symptoms but still test normal.

Good luck!

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LanaorAna1 · 23/07/2016 22:06

Have you got the readings from the blood - I suspect thyroid.

I was sent away by the GP countless times because they told me thyroid was 'normal' - turned out I was bloody nearly having heart failure because I was so sick from hypothyroid. A lot of medics can't read thyroid results properly. I am not the only person I know who that has happened to, either.

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LanaorAna1 · 23/07/2016 22:07

Oh, and take vitamin D every day, that can do wonders. The spray you get in Holland and Barrett (the strong one that costs a pound more) works best.

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SmashingTurnips · 23/07/2016 22:12

Sounds like it could be b12 deficiency.

Do you know how low you are? Most doctors don't take it very seriously in my experience. My levels were on the floor and I had heart palpitations, breathlessness, chest pain and loads of other symptoms. I ended up collapsing and in a an e.

I take a good quality high dose supplement and am fine now. Thought I had a heart problem at the time, couldn't do the ten minute walk to school without feeling faint and panicky. There are loads of good threads and good advice on here about b12.

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Fomalhaut · 23/07/2016 22:16

My Bp was down to 80/53 at one point and I felt shit. I also had hyperemesis so I was wiped out. I've never experienced fatigue like when I was pregnant. Ds sleeps for no more than an hour at a time and I'm still not as tired as I was when I was carrying him. For me it wasn't one thing, it was a combination of low blood pressure, constant vomiting, being unable to eat properly etc. For you you may be borderline on several things and it combines to wipe you out.

Pp who said that you need to see the actual numbers is right. Lab values have what we call 'normal reference ranges' the idea being that there's a range of normal. And there is of course!

However.., the ranges for thyroid for example in the uk are much broader than other countries and you can have quite bad symptoms while still being technically in range. Ditto iron.
You need a full thyroid panel done. TSH, free t3 and 4 and antibodies. Get a printout of the results (you are entitled to this.) for example - TSH should be 1.25 or less (even though the range is 0.4 ish to 4.5 ish.)

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notagiraffe · 23/07/2016 22:18

What about Vit D deficiency? That causes extreme exhaustion and is so common in UK.
Gluten intolerance?
I've been on a massive mission to sort out extreme exhaustion (was sleeping 16 hours a day, had to give up work, put on loads of weight etc but like you, bloods came back normal.
I cut out sugar and processed wheat except for pasta once a week. No white bread.
I now drink 2-3l water a day. That has made a massive difference.
Supplements: Tyrosine, Vit B complex, Floradix or Feroglobin tonic.
Spend at least 1 hour in direct sunlight every day. Choose the sunny seat, eat outside, go for walks and runs rather than gym/treadmill etc. I never use sun cream, even though I have very pale skin, because activating Vit D is so important.
These have made a massive difference to my energy levels and I now rarely sleep more than 8-10 hours. Often only 8 or less. It's given me back a life. Worth a try as all these are very easy to incorporate into your routine.

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OvariesBeforeBrovaries · 23/07/2016 22:20

My first thought was POTS. (Postural Orthostatic Tachycardia Syndrome; causes an abnormal increase in heart rate when standing up) here.

Have you been tested for coeliac? I have that and it's caused chronic iron deficiency since the age of about 14, alongside b12 and folate deficiency.

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AnnieBeeBee · 23/07/2016 22:41

OneMoreForExtra - ooh thank you. I am on that page now and reading more. I had no idea it could be so tricky to diagnose!

LanaorAna1 - I didn't get the readings, but I will definitely try and get them now. Oh my goodness I'm sorry that was happening to you! I'm glad you got it sorted though. Is it under control with medication?

SmashingTurnips - my B12 was 114 back in November. I haven't had it tested since, but have been taking supplements since. Argh what a scary experience to end up collapsing and in a&e! Can I ask what brand supplement you take?

Formalhaut - ugh that was awful. What a relief it went away when your bab was born. Thank you for the full thyroid panel info - this is super helpful for me to ask for! I have made a note.

Notagiraffe - one of the supplements my nutritionist recommended I take is vit D (I do use factor 50 though!). I only saw the nutritionist once, just before Christmas as it was so expensive. I also totally avoid gluten (I basically live in a coeliac!) as I know it makes me feel crappy and I don't want one extra thing. With your cutting out sugar - does it include stuff like honey? And things sweetened with fructose? Those supplements you take are good to know! I haven't heard of Tyrosine, I will check it out!

OvariesBeforeBrovaries - my coeliac blood test came up negative. Again, I was just told I didn't have it, I didn't actually look at the results. But I know gluten messes my system up. For years I had "IBS" and then I realised it was only gluten that was causing my symptoms. I don't eat it anymore, even though I am not officially a coeliac. I'm sorry you're still suffering from deficiencies! Scary/ interesting to know that they can continue even after the gluten is gone...

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OhMyWord16 · 23/07/2016 23:34

Are you supplementing B12 with a sub lingual spray/ lozenges?
If you do have pernicious anaemia or are heading towards it,; there's no point in oral B12 tablets, as you can't absorb it.

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BeenThereTooSEL · 23/07/2016 23:47

I'd have a look at POTS syndrome?

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BluePitchFork · 24/07/2016 07:03

if you hadn't eaten gluten at the time of the test, the test didn't work. it looks at how you respond to it iyswim. coeliac could explain a lot if your symptoms especially if your gut is very damaged and cannot ansorb nutrients properly.

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AveEldon · 24/07/2016 08:39

Agree with the PP who said if you weren't eating gluten when they did the blood test it would give a false result

Have they given any reason for your anaemia?

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VertiginousOust · 24/07/2016 08:49

B12 deficiency will give you all of those symptoms and 114 is a very low level indeed. It makes you feel terrible and if untreated it can give you irreversible neurological damage. You need to see a different GP about this ASAP and keep seeing one until you find one who takes it seriously.
Your b12 should not reach that level for dietary reasons unless you are vegan so if you are not, you have something that is preventing absorption. It almost doesn't matter what the reason is, the treatment will always be the same. In which case, supplements are useless and you need b12 injections for life - starting urgently.
I have pernicious anaemia (and it is not something that can be ruled it by a GP with no testing) and am currently on daily injections and just about getting back on an even keel. I was diagnosed last year with a level of 104. I can't stress enough how important it is to get this looked at again, unfortunately there are a lot of GPs who really don't know much about it and are very dismissive but the guidelines are that anyone symptomatic (as you are) should start with every other day injections until there is no further improvement.

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Doggity · 24/07/2016 10:50

Anaemia can cause all those symptoms. I suspect your B12 deficiency is the culprit.

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AnnieBeeBee · 24/07/2016 13:44

Ohmyword16 - I've been taking sublingual B12 tablets. But no idea what my levels are now (last tested November). I had no idea that the tablets wouldn't work if I had an absorption problem - going to request a blood test to get retested right away!

BeenThereTooSEL - I hadn't heard of that syndrome before this thread, but the symptoms sound very familiar! I am definitely going to bring this up with my doctor, thank you!

AveEldon - very dismissively, the doctor every time, (it's not the first time b12 has come up deficient and iron low - come to think of it, it's probably never risen. Just every now and again I feel so exhausted I start trying to investigate stuff again) says "well, you're a vegetarian and that's why". I'm actually a pescatarian. Yes I was definitely gluten avoiding when I did the test, but did try and have a bit before it. I have always wondered if I'm coelicac, I have been very strict about gluten lately to see if it'll make me feel better. I don't have any "ibs" anymore, but the tired fog remains.

VertiginousOust - gosh I find this very interesting. I had no idea being vit b12 deficient could actually make you feel this bad... the absorption thing does worry me. I'm not a vegan, but -as I mentioned upthread - I'm a pescatarian and the docs always just put my iron and b12 levels down to that. ALWAYS. It drives me a bit mad as I'm not the only person I know who doesn't eat meat and they don't seem to have any problems! Plus, I eat an egg a day (for the b12). After injections, how long does it take to feel better? Do you happen to know if the injections are ok in pregnancy/ breastfeeding?

Doggity - yes, after reading advice I'm starting to wonder, too! Gosh it's so frustrating. I had previously assumed it mustn't be, since I'm so diligent with the supplements and my diet.

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AveEldon · 24/07/2016 14:43

B12 injections are fine in pg and bf
You need blood tests to check for pernicious anaemia and preferably also a camera down to look at your stomach. They can also do an endoscope up to check your gut too

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