Hi, I wonder if anyone can help me with some advice.
Last June I developed a goitre and while investigating it I was found to have low potassium. The potassium loss is getting worse (I am currently on 6 sando-K tablets a day to stabilise me at around 3.5). I am under an endocrinologist to try and get to the bottom of this.
Pre June I felt very well in myself despite unknowingly having potassium levels of around 2.7 to 2.9 but since then I've developed all sorts of other symptoms. Here's a rough outline.
Sept 2021 to current: Stiff hands developing overnight esp right hand. Worsened to carpal tunnel for 2 weeks in the first few weeks but then that part resolved itself. The stiffness is worse on waking but lessens within half an hour or so of getting up. Occasionally I have trigger finger in my ring finger on the right but that comes and goes plus I have two bony lumps on each of my thumbs. I've been referred to an arthritis specialist who did various bloods, x-rays and ultrasounds but could find nothing wrong. I have no idea what these tests were for or the results as he's never informed my surgery. I've written to him to try and find out but no response as yet.
Nov 2021 to current: Pulsatile tinnitus in right ear. MRI on head done in Feb, nothing abnormal found so GP advised it was just tinnitus and of no concern.
Dec 2021: Heart palpitations, mild, only lasting around 10 seconds. ECG done, two abnormalities found but not significant (said the Dr who did the ECG)
Feb 2022: Sinus infection found when I had MRI scan, I only found this out recently when I asked for my medical records as no one has ever mentioned this before.
Feb 2022 to current: High blood pressure. Now on medication which has reduced the systolic somewhat (average now 138) but diastolic still stubbornly in the 90s. GP ok with 138/92 as last average reading so staying on 5mg ramipril daily. My morning readings are worse than the evening ones so I unilaterally changed when I take the ramipril to last thing at night but honestly, this doesn't seem to have made much difference - the morning ones are still worse.
Feb 2022 to current: Exercise intolerance. When BP first found, surgery decided it wasn't high enough to medicate so decided to exercise more. I found the more I exercised, the stiffer I became when I was sitting for a while. Also muscles in my legs became tight and sore - as if they were on the point of cramping but not quite. Ligaments in my legs felt sore too. I also lost 12kg and am about 4kg off of normal weight now - this doesn't seem to have helped BP at all but it did move me from pre-diabetic to normal so can't complain.
March 2022 Urine incontinence so I've been diligently doing pelvic floor exercise which seems to be helping.
April 2022: Heart palpitations for 20mins. I phoned NHS111 who recommended going to A&E. I was admitted to a ward from A&E with low potassium and put on two consecutive drips. I was on 4 SandoK daily and they recommended 6 from then on.
May 2022: Burning feet at night, this lasted for about 2-3 weeks then resolved itself. After about a week of the burning, I experienced what I can only describe as how I imagine it would feel if my feet were tasered - a kind of electric shock in my feet when I would reflexively stretch my feet. Luckily that only lasted about a week.
June 2022: Despite the heat I had an attack of Raynaud's syndrome, just in my left hand index finger, the first two joints and then several attacks in the week that followed that were less spectacular, more a vague yellowing/redness of my hands. I've never had anything like this before.
June 2022 to current: My hands and feet are often cold though. Since menopause I've run on the warm side but in the last month I've been both chilly especially in the arms and legs but also uncomfortably warm at other times.
June 2022: Back pain, sometimes lower back, sometimes middle slightly below shoulder blades. Sometimes shoulders (husband offered to massage shoulders but when he touched them lightly - it was very painful so I said no thanks!). This has mostly resolved itself, lower back still twinges on occasion but I do have a history of lower back pain.
June 2022 to current: clicking joints in legs - ankles, knees and occasionally the top of the legs too. I used to have clicking knees as a child but now they click when I open my knees, not just when bending.
June 2022: Dry eyes: I had a routine eye test at the opticians along with an OCT scan. The optician diagnosed severe dry eyes and recommended drops. I have enough tears but they are not oily enough. The OCT was normal although I do have deterioration vitreous detachment which is age related.
July 2022 to current: Dry skin on face (Forehead, nose folds, a little bit on upper lip both sides and chin), this spread to my ears and scalp and bellybutton but is now resolving itself (I used vaseline as a moisturiser but no medication).
Aug 2022: I am currently due a liver scan next week because of an enlarged liver and raised ALPs
My history: I have migraines (aura only, no pain); terrible snoring since menopause (or so my long suffering husband has told me); memory issues mostly recalling some nouns and names for maybe 20 years but this has definitely worsened in the last year. I used to get a lot of acid reflux at night but this has mostly gone since I lost the weight this year. I used to take rennies but haven't for months. I do suffer from more headaches than normal, especially ones overnight that resolve without medication if I get up.
Family history: Father had psoriasis; mother had hypothyroidism, high blood pressure and type 2 diabetes.
As we didn't seem to be moving forward with any kind of diagnosis I asked for a copy of my medical records and I wish they had told me all the testing they've done. My surgery has done all sorts of blood tests ruling out various problems in particular immune system issues such as lupus, multiple sclerosis and sjogren's (although I recognised they can't be absolutely ruled out but all antibody tests have been negative for these).
However one antibody test was positive, in June 2021 my Serum Thyroid peroxidase antibody concentration was tested and it was 152 IU/mL (range <34). The advice from the lab was to monitor TSH levels which they have been doing and it's been reducing from 3.9 to 1.5 slowly over the last year (range 0.27 – 4.5). But while my TSH has been reducing, my symptoms really haven't - in fact in the last year they've been coming thick and fast. One of the nurses asked for a FT3 test this month but the lab denied it saying the FT4 was normal (it was 16.0 pmol/L a year ago and is 16.0 pmol/L currently - range 11.0 – 23.0).
So do I have Hashimoto's? Or do these symptoms point elsewhere? I have blood results I can post if necessary - although most are normal. If you get this far, thanks for sticking with me.
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Positive thyroid peroxidase antibody confirm “Hashimoto’s” doctors in uk sometimes use term “autoimmune thyroiditis” but medics ignore the autoimmune aspect as there isn’t a treatment to address antibodies.
Therefore doctors say “under active thyroid” once the levels reach under range and offer thyroid replacement treatment at that stage.
Early on with the disease the TSH & thyroid hormones FT4 & FT3 can fluctuate greatly & that can cause symptoms.
The immune system attacks the thyroid and the destroyed cell release the hormone stores and can cause transient high thyroid levels (high FT4 & FT3). It also cause substances which aren’t usually outside the thyroid to be released. This is what antibodies signify they are “cleaning up” those substances. The level of antibodies don’t directly correlate to the severity of disease but they are useful for diagnosis - but not thereafter.
The TSH responds often at a delayed rate, to FT4 & FT3 levels - so the TSH is not entirely reliable. What you need to know are the FT4 & FT3. Where they are in the range and if FT4 & FT3 and are appropriately balanced, often they are not - which is why both should be tested at the same time.
Careful Monitoring is important as declining levels inevitable and you can ensure treatment is commenced before FT4 & FT3 level reach clinical - under range levels - as you have confirmation of antibodies.
Ensuring your nutrients are optimal will help ensure any indirect symptoms are not caused.
By this I mean, dysfunctional thyroid causes low folate ferritin, B12 & vitamin D for example and this can compound hypothyroid symptoms (and can keep the appearance of in range TSH & lowers conversion of FT4:FT3). Having low nutrients also means when levo is commenced it’s less tolerated and doesn’t work well & convert to FT3 in the body.
There are private testing options which would give you a full picture for thyroid in 1 go & likely make quicker progress.
You order online and kit is sent via post. Sample taken by finger prick. Results are often available very quickly online. Do you think this might be an option for you?
Thank you PurpleNails, I appreciate the detailed information.
I've ordered a full thyroid panel from medichecks a few weeks back but I take a multivit and have for several years as I was unable to give blood due to within range iron but too low to give blood - historically I've always had normal but low iron although I've only ever had to supplement once after I gave birth to my first child. I chose a multivit as I'm vegetarian so thought I might as well take a range of supplements. I understand from reading here that that might not have been a great idea though.
I will have stopped taking the multivit for 2 weeks on Monday so I shall be making an appt to have bloods drawn then (and also we're in the middle of a heatwave and from reading here in the past week, it's best if I wait until the weather is cooler before doing the test.)
They recommend blood drawn rather than a finger prick test because of the folate part of the test and I wanted the best chance of an accurate result.
Vegetarians often low in iron & B12. Was iron serum (an iron panel) tested or ferritin?
Always best to test then supplement at right level. Did your multi supplement contain iodine? this can affect thyroid unpredictably.
In range results are not same as optimal. GP will look at abnormal result but low are ignored. You need optimal levels.
Right about testing. Not to be attempted in this hot weather. Folate has high failure rate. I managed finger prick test successfully when I did it. Shockingly as often my venous draws are Haemolysed.
Have your past tests been as recommended in morning after fasting?
Yes, all bloods done after fasting, but only by accident, the nurse that does bloods likes to have an early appt and I'm never hungry first thing in the morning.
Serum folate level 11.8 ug/L (2.0 – 18.7) ok. As about halfway through range.
Serum ferritin level 48.4 ug/L (20.0 – 260.0). This is low enough to cause symptoms, eg more hair fall, breathlessness. Iron rich foods (harder as veggie). Iron Supplements not recommended unless iron panel tested first as possible to have low ferritin (iron stores) but high serum iron.
Serum total 25-hydroxy vitamin D level 68 nmol/L <25 deficiency; 25 – 50 insufficiency -
80-100 more optimal. I Often see “better you” spray recommend. Green bottle is vitamin D only, Red bottle contain K2 too. which direct calcium to teeth & bones where wanted away from arteries were its not. K2 is high in organ meats so may be worthwhile. 3x sprays daily to get recommend level.
Magnesium another vitamin D cofactor there are various forms. I find citrate powder good at night time.
Have you have cortisol tested?
Also your eyes. Were you recommend eye drops & eye wipes which are *Preservative* free? Using eye drops & wipes & rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I found warm compresses (eg wheat bags, microwaveable gel masks) helped dry eyes. Very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water.
Eye drops are preservative free, I'm just taking one drop in the morning when my right eye feels dry so once every few days down from 4-5 drops daily both eyes. I don't know if the eye drops helped or if this is one more symptom that just comes and goes seemingly at random.
From what I understand magnesium testing is unreliable as only 1% of total body magnesium is present in the blood, (The rest is in bones, cells, and tissues)
This makes it difficult to get an truly accurate measurement. The most accurate measure is red cell magnesium & I don’t know if serum is same or the better test.
Being high is interesting as abnormal levels could explain the affect on blood pressure and blood sugar.
I can't thank you enough for all the help you've given me tonight PurpleNails, I'm going to go away and try and put what I can in practice. I shall ask if the GP can give me an iron panel test, they've been pretty good so far so I'm hopeful and then I'll take your suggestions for supplementations from there.
B12 is extremely low. As vegetarian this is likely to be liked to diet. But ideally your GP would test for Pernicious Anaemia before starting any B12 and vitamin B complex
You may need B12 injections
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Thanks SlowDragon, if I had pernicious anaemia - would my B12 be able to increase between blood tests? Or maybe the tests aren't highly accurate?
15/06/21
Serum vitamin B12 level 263 ng/L (197.0 – 771.0)
15/02/22
Serum vitamin B12 level 282 ng/L
I've always had iron in the lower range, pre-vegetarian, post vegetarian, when I was on depo for very heavy periods for 20 years and then had no periods at all because of it - my iron stayed pretty stable but low. I only ever had to take supplements after the birth of my first child. During all of that time not one health professional looked at, or even mentioned my B12. It's been a bit of an eye opener for me, having had no chronic health issues previously I hadn't realised how much a patient needs to understand about their own health.
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