I was diagnosed with hypothyroidism around 2012 - 2013 and prescribed Levothyroxine by my GP.
Prior to an operation in 2017 I had pre-operative bloods taken, which included TSH and FT4.
My blood test results showed that my TSH levels were very low and outside reference ranges.
TSH : * 0.09 mIU/L 0.27 - 4.2
My FT4 showed normal
FT4 : 15.4 pmol/L 12 - 22
Full blood count results reported:
White cell count as * 12.4 x10^9/L 3.5 - 9.5
Haematocrit *0.443. L/L 0.32 - 0.43
Hemoglobin was just within range 147 g/L 110 - 147
It wasn't until a much later date following surgerys that I became aware after multiple hospital readmissions , which report I had multiple vitamin deficiencys. Vitamin D Deficiency, folate Deficiency, low phosphate levels, raised creatine and fibrin levels, U&E outside reference ranges to name just a few, as well as being covered in sores on my chin, sides of face, hair ,stomach. My legs and backs of thigh's had huge weeping abscesses . I had cellulitis, staphylococcus skin infections, raised ddimer over 1200 , chest infections, and then after over a year of being so poorly physically and phycologicaly I was then admitted with suspected strokes as I had X3 episodes were I started with pins and needles left side of my body leg, side, arm , left side of my face and tongue and confusion, dizziness, sickness, totally oblivious to my surroundings, treated for encephalitis with, then possible blood clot on my brain, diagnosis hemiplegic migraines! Vertigo, bpv and 5 years on I am just getting well and I wanted to know if my TSH levels being very low and undergoing further redo surgery within 28 days of original had anything to do with what happened to me and difficults during the primary surgery with bronchospasms, difficult to intubate and extubate and delayed recovery extreme pain ?
Can anyone help at all as trying to make sense of it all for my own self
Thank you for reading
Written by
Jendawen
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Wow you’ve really been through so much that’s crazy. Well done for coming out the other side through all that you really are a fighter. My opinion (which doesn’t mean a lot) is that your TSH probably had nothing to do with this. A lot of people on thyroid meds have a low TSH but it doesn’t affect you negatively and your immune system or ability to fight infections etc. I’m pretty sure you can forget about that as being a source of your issues. I’m sure you’ll get a few replies here but good luck in the future I hope you live a long and healthy life x
Thank you so much for your reply and positive comments. I still have a long way to go and have since been diagnosed with a neorogenic bladder and bowel and undergoing further tests as looking at having to have a stoma fitted.
It's been so hard. My primary surgery should have been straight forward, in and out the same day and should have taken 90 min start to finish. But instead I ended up under anaesthesias for 3.5 hours in the probe position. Help had to be called as I experienced plugging, bronchospasms and loads of thick yellow secretions apparently so needed repositioning, suction, re tubbing, salbutamol, ketamin, fentanyl, diamorphine, morphine and then upon being woken up had issues with extubation. Initially I couldn't feel my legs at all and thenstarted with pins and needles,followed by agonising bilateral Groin Pain and lower back pain. I was coughing my guts up, put on oxogen for two hours and admired as an inpatient for emergency physio on the ward. I didn't leave recovery for over an hour and half and I was discharged the following morning on opiates, in pain and not knowing if this was normal, in my head or not. I spent 8 days after not being able to sit, stand, lie down or even touch my big toe to the floor. I only went in for a straight forward Left sided L5 S1 Microdiscectomy. Because my chest was so bad as well I was just a mess. I then was readmitted to find out that the surgery I needed,agreed to hadn't been done instead ide had a laminictamy and the post op MRI showed that I had a moderate broadbased central disc extrusion compressing left nerve root and contacting right and now needed to have emergency surgery and have the surgery redone because disc space wasn't entered during primary surgery and I had no idea as wasn't told.
My health just went from bad to worse .
I'm determined to get back some quality of life before all this, but part of that is needing to know what went wrong if that makes sense. I've lost alot of trust, but in finding this health forum it made me feel I could open up and get some concerns put to rest.
a) it is a messanger from the pituitary to the thyroid to tell it to make more hormone. Thyroid Stimulating Hormone, it's main job is therefore to stimulate the thyroid.
b) it also stimulates production of the proteins that convert the thyroid hormone T4 to T3.
So, I agree with ockerdoc it is highly unlikely that the TSH - or lack of it - had anything to do with the problems encountered during your surgery. Your FT4 was euthyroid (normal) so one would imagine your FT3 was, too (pity they didn't test it!) - do you have any sort of thyroid diagnosis? Hypo? Hyper? Doubtful that anything thyroid had anything to do with any of it.
I do hope you fully recover from this nightmare very soon. x
I wouldn’t say it’s your TSH level being low that is the problem but more likely inadequate levels of thyroid hormones.
TSH doesn’t do a lot except act as the body’s signal when we need more thyroid hormone. When we medicate replacement hormone the whole signalling system often becomes skewed and many(most?) forum members have a low TSH.
Unfortunately medics are trained to mistakenly believe the TSH is a good indicator of thyroid hormone levels but your own results and hypo symptoms evidence this to be untrue.
Nutritional deficiencies are common on the forum because we need adequate thyroid hormones to drive the processes needed for good absorption and utilisation. We also need these nutrients to help our thyroid hormones work best and so it becomes a vicious circle.
Convention medicine serves best in offering drugs to suppress a complaint/condition as opposed to looking at preemptive measures to maintain good health. Sorry to hear you have been through so much.
Your best course of action would be to get a true picture of your thyroid function by having TSH, FT4 and FT3 measured. When doctors won’t/can’t test all these, members use private labs and post results here. You can get some discounts here … thyroiduk.org/help-and-supp...
I have had three hospital admissions with suspected strokes and was diagnosed BPV among other things. Eventual diagnosis via a neurologist was vestibular migraine. I get hemiplegic features when I get VM. All the symptoms you describe are associated with VM and I had these on admission
Additionally you’re very deficient in vitamins.
I don’t think low TSH was related to this. What is your FT3 (not shown)?
Are you under a significant amount of stress at the moment?
Hi. I was at the time as had been so poorly following my surgerys and what happened,followed by skin infections, cellulitis abscesss the impact of the numerous vitamin deficiencys, problems with my bladder bowels just before second surgery and constant hospital admissions from my dimmer going through the roof but all though given blood thinners there were no clos in my lungs or dvt. My x-ray did show small areas which were not inflating I forgotten what the hospital said the medical term was. I no when I was seen by a neoro he said it was quite worrying as I was being admitted to hospital and so poorly as if I was in my 89 s not just 40 . The last admission third I think I was given antiviral antibiotics and I have been ok since. So although neoro said hemiplegic migraines it's strange that the treatment for encephalitis actually helped and I've been fine since
First step…..get FULL Thyroid and vitamin testing especially including Ft3
Inadequate dose levothyroxine leads to low vitamin levels
Low vitamin levels tend to lower TSH as result in poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Sounds very much as if LOW B12 has contributed to many of your symptoms. If Nitrous Oxide was in the anaethsetic then B12 would have been depleted. Will add a link where you can view the signs and symptoms of this very misunderstood vitamin. Neurological symptoms appear first. When B12 is LOW - Homocysteine is raised - and can be the cause of strokes....
Thank you all so much. I currently take 125mg levothyroxine one day and then 150mg the next. For some time following my surgerys my blood tests were all over the place. I had vitamin d deficiency which was awful as was so poorly. I know take vitamin d daily and I think that my levels are alot better as I ended up with folate deficiency, my potassium levels were low, and since my kidney tests have been slightly raised as I have been left with a neorogenic bladder and have to self catheterise. Been struggling with this and most recent I had to go to the hospital as my levels were showing signs of kidney injury. I've been having more support recently and this is alot better. It's been a very long recovery and I do think the impact with the level of pain I was in after my initial surgery aand sent home still on pain and on oramorph and then having to return to theatre within less than 28 days from original surgery and everything that followed has impacted my mental health. I am so much better than I was but still have a long way to go and it helps to move forward knowing and understanding a little more about my levels and effects. Thank you guys.
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