I can see from my medical records that I'm being set up for the prognosis of 'hysterical woman'
To set the scene
As previously described, I've had a lot of symptoms since mid 2021 with no resolution and the only positive anti-body test is for Tpo. I have lots of physical symptoms from an enlarged goitre, low potassium (medicated), pulsatile tinnatus (although no GP has tested to check if it's objective or subjective), high blood pressure, raynaud's syndrome, sliding haitus hernia, bile in stomach, enlarged gallbladder, and now haemorrhoids).
I also have a lot of subjective symptoms - aches and pains in hands and feet, temperature control issues - too hot and too cold.
Most blood tests are in range, though not all.
A CT scan done because a gastroendoscopy showed a extrinsic mass pushing into my stomach, showed an enlarged gallbladder (but no stones or slurry) and a small amount of fluid around my heart. I am having a ultrasound to investigate further. I have had several episodes of heart palpitations in the past (usually a mild fluttering but once for 20 mins) which seems to coincide with my potassium falling.
When my blood pressure was checked in Aug an average of 138/92 was deemed acceptable and I continued with 5mg ramipril daily. My notes state I was told I would have my blood pressure taken in a years time unless I had vision problems, head aches or dizziness, in which case I was to go back to the GP. I was not told this in person at all - I read this on my notes which are now online. I don't really care how this information was conveyed though it makes me wonder how often GPs are covering their arses by pretending to say things that weren't said in the notes.
Mid September I started to get mild headaches which disappeared when I got up. This slowly worsened to having a mild headache until mid afternoon. Sometimes painful enough to need tablets and sometimes not. I didn't want to make an appointment with the GP on these vague symptoms so I started taking my BP and found it would rise until mid afternoon and then fall back. I've attached a sample day so you can see what I mean. Some days it rose above 180/100 but then fell back to around 140/90
Anyway because of the high bp readings and because of the pain in my chest (which was more like something stuck in my chest than a pain - like swallowing something very dry and needing water to help it go down) I was sent to A&E. I didn't want to go as the chest pain felt exactly like I'd had previously with palpitations which had already been looked at).
When at the hospital I was asked if it could be anxiety - I mean, sure it could be but why would the results go up and down in such a regular pattern if it was anxiety? I was then asked if I felt anxious about my blood pressure going up. I said no, but when it was over 150 systolic I did feel a bit anticipatory - like something was going to happen, like Christmas or going into an exam - so not necessarily a good thing or a bad thing, just something. I also said that feeling disappeared when the blood pressure went down again.
TL;dr
I've just checked my GP notes and the A&E said I was taking my blood pressure loads of times in a day and getting an anticipatory feeling from it. No mention of any headaches of course. So should I leave it? Or write to the surgery and at least put forward my recollection? It feels no win, I do nothing and it's there on my notes and I do something and it reinforces I'm an anxious patient.
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Souzy
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Have you ever had an iron panel tested? I don't just mean ferritin (iron stores).
People can have reasonable levels of ferritin and very low levels of serum iron. Since doctors don't test iron very often they go just by ferritin and it can be misleading.
Ferritin can be raised by inflammation and infection.
I would suggest that you get an iron panel done, if possible. This link is to a good version of the iron panel.
If you have any results for a Full Blood Count (FBC) that might be informative too. Doctors do an FBC quite often so you probably have had one done. If you have access to your results, what are the levels of Haemoglobin (Hb) and MCV (Mean Cell Volume or Mean Corpuscular Volume)?
Please note that iron deficiency can occur with or without anaemia. Iron deficiency should be treated with or without anaemia.
Thanks humanbean - I've only ever had ferritin done (in range but very low). I was taking a multivit because of low iron (I've always suffered from it) but am now trying to replace it by supplementing the vitamins I actually am low in.
I've been taking D3000+K2 for some weeks, I've just added in magnesium in the last week, I intend to add in a multi-B in a few weeks time and then after than do an iron panel with a view to adding in iron.
I can't say for sure but in the last 4 days I've been taking the magnesium, the last 3 I've been sleeping through the night - something I've not been able to do for the last 20 odd months due to having to get up in the middle of the night to pee. My sleep quality is better as well.
Your haemoglobin is well in range, so you aren't anaemic.
Your MCV is roughly 37% through the range.
MCV tells you the average size of your red blood cells.
If MCV is very high in range or over the range then this suggests your red blood cells are very large and you are probably suffering from low vitamin B12 and/or folate.
If MCV is low in range or under the range then this suggests your red blood cells are very small and you are probably suffering from low ferritin and/or low iron.
If you are low in vitamin B12 and/or folate AND low ferritin and/or low iron then your MCV doesn't give you any particularly reliable information about those nutrients.
Your MCV is quite a bit lower than mid-range suggesting that your iron and/or ferritin might be a bit low. But your MCV is not terribly low, so I wouldn't worry about your ferritin/iron on the basis of the MCV. I would want to know the actual nutrient levels directly.
I'll work through those links later but as to your questions:
Prescribed medication
SandoK potassium tablets 6 daily split into 2x3 tablets at meal times.
Ramipril 7.5mg (just raised) taken last thing at night.
Recommended by a medical professional
BetterYou D3000+K2 daily, taken mid morning.
I took a full thyroid panel test by medichecks who found I was insufficient in Vitamin D and suggested I take a vitamin D supplement and retest in 10 weeks. I take BetterYou D3000+K2 daily because I've been having digestive issues (gurgling and mild diarrhoea/constipation and stomach pain) for the last 3-4 months - I'm having a coeliac test for this and because I have TPO antibodies in about 3 weeks - will be booking it in a few days). I have a raised ALP which can be caused by low vit D so I will be tested for that by the NHS.
Self supplementation
Magnesium taurate 600mg daily taken last thing at night.
I intend to add a B complex vitamin and then do an iron panel with a view to adding an iron supplement.
My potassium is currently at 3.8 (range 3.5 to 5.3) but was discovered June 2021 when I visited the GP with a fast growing goitre (that stabilised very quickly but is large at 6cm across and is retrosternal). I had no other symptoms except the goitre but standard blood tests showed my potassium was 2.7. It's never gone that low although it's been below 3 several times, hence my potassium prescription slowly being raised. I am under an endocrinologist who can't find out where it's going. He's done a blood test and 2 24 hour pee tests. My surgery has done multiple blood tests for all sorts of conditions. Unlike my surgery, specialists seem very reluctant to share their results so all I know is that everything was normal and he's tested aldosterone, renin, bicarb and the aldosterone/renin ration because he mentioned it in passing in a letter to my surgery.
Getting regular testing was a saga in itself but now I'm being tested every 3 weeks. I'm interested to see whether the reduced urination increases my serum potassium despite the endo claiming there was no abnormal levels of potassium in my urine.
I've asked the surgery who told me to ask the endo (which I did by letter) if I could aim for a target of 4 to 4.5 potassium and amend my medication as per the results of the blood tests but I've had no response (I think the endo office is really busy, they rarely respond to anything and I've just had some blood test requests in the post from presumably them with no covering letter and their last letter had two really simple mistakes).
Also I've just had a CT scan to investigate the extrinsic pressure into my stomach and a painless palpable swelling in my upper right quadrant (just under my ribs). There was no mention of any abnormalities to my adrenal glands. Although tbh the consultant sent a letter to the referring GP initially saying the results of the scan were unremarkable. It was only after I sent a letter querying this because myself and two medical professionals had felt the initial mass, that it turned out I had an enlarged gallbladder, a cyst on my liver and a small amount of fluid around my heart.
I'm having an abdominal ultrasound in a couple of weeks so I shall ask if that includes my adrenal glands though.
The last results you posted your folate looked like it could be improved. You mentioned a multivit, so what are you taking supplement wise at the moment?
Medics ideas about whats OK and whats not does seem to vary regarding blood pressure. Perhaps find medical evidence as in NICE guidelines to show to them if you are concerned you need more medication?
Thanks Jaydee - I hope you don't mind me cut and pasting part of my response I've just posted to humanbean
Prescribed medication
SandoK potassium tablets 6 daily split into 2x3 tablets at meal times.
Ramipril 7.5mg (just raised) taken last thing at night.
Recommended by a medical professional
BetterYou D3000+K2 daily, taken mid morning.
I took a full thyroid panel test by medichecks who found I was insufficient in Vitamin D and suggested I take a vitamin D supplement and retest in 10 weeks. I take BetterYou D3000+K2 daily because I've been having digestive issues (gurgling and mild diarrhoea/constipation and stomach pain) for the last 3-4 months - I'm having a coeliac test for this and because I have TPO antibodies in about 3 weeks - will be booking it in a few days). I have a raised ALP which can be caused by low vit D so I will be tested for that by the NHS.
Self supplementation
Magnesium taurate 600mg daily taken last thing at night.
I intend to add a B complex vitamin and then do an iron panel with a view to adding an iron supplement.
You'll see that only 0.3% of the body's magnesium is found in serum, and 0.5% is found in the red blood cells.
The bulk of the body's magnesium is stored in soft tissue, muscle and bone.
If the magnesium level in your blood runs a bit low the body will steal it from soft tissue, muscle or bone. You could be very deficient in magnesium but the amount in blood will look fine. As a result the levels of magnesium showing in a blood test really don't give information that tells you anything useful.
When people supplement magnesium any excess is excreted via the kidneys, as long as the kidneys are functional.
If the kidneys are NOT functional then supplementing anything is possibly dangerous because levels of the supplement could build up.
I've had several magnesium tests - either 1 or 0.95 (range 0.7 to 1). The last one was 0.93 so I felt safe adding in a magnesium supplement especially as someone said it can help with vitamin D absorption. Apparently high serum magnesium can explain certain types of conditions which cause low serum potassium according to my endo. He likes testing for it 🙂
I don't think I have kidney issues , I've had e-GFR bloods done, back in June 2021 they were slightly under range at 87 ml/min (range 90 to 200) but since then they've always come back as in range >90 (no range or results given - just normal and greater than 90)
Some blood pressure pills flush potassium from the blood - worth checking.
Yes, write to the GP to correct the impression the A+E notes gave, or it will go down in tablets of stone and be added to so you will be down as "hysterical woman". Ask for the letter to be added to your file, not just read and filed in the round filing cabinet in the corner.
When you are in hospital they check your blood pressure multiple times a day, so there is nothing wrong with checking.
Hi Serenfach, the blood pressure came after the low potassium. I'm on an ace inhibitor which does mean the body holds on to potassium but because mine is low without medication, they thought it would be ok to prescribe, which it has been so far.
The thing that grinds my gears is that I was only checking my blood pressure because I had a headache over several days rather than immediately trying to get a GP appt. And the GP sent me to A&E (because he phoned re the CT scan) as he was concerned about my symptoms, I didn't go of my own accord.
Dealing with the NHS is as stressful as being unwell imo. Different depts contradicting each other, trying to take short cuts in their own jobs which leads to more work overall.
Wanting people to look after their own health (the BP machine was suggested by a GP) but then getting annoyed when they do.
I'm going in for potassium testing tomorrow so I'll write that letter tonight I think,
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