I have been on levothyroxine since the 1980s, and last year I experienced various fainting issues in 2021 (see bio). I would be grateful for any advice anyone can offer.
In August 2022, on the Saturday of the long extreme heatwave I got up at 6.30 much earlier than normal to open all windows and went back to bed. Whilst discussing plans for the day I turned my head and suddenly felt faint so put my head on the pillow. My husband states that I collapsed and was making gurgling noises in throat. On coming to, I felt shaky/shivery although the room was hot, and required toilet. I felt extremely tired all day and had very bad night, waking hourly. Only other symptom was mild odd neck sensation.
On reporting to GP, I requested blood tests for thyroid. These came back, Serum TSH level 1.6 mu/L (0.27-4.2) and GP was still adamant problems were not thyroid related. I also reported collapse to Hospital consultant who thought the faint whilst lying down was highly unusual and arranged a test for Carotid sinus which proved negative. As collapse was supine, the consultant advised me to stop driving and swimming. The GP also advised that I cancel a holiday abroad. I am now on a waiting list to receive an implant (prolonged heart monitoring).
I informed the hospital consultant that my late-mother had been diagnosed with late-onset epilepsy when she was my age, but her collapses were more frequent, and she lost control of her bladder (unlike me). The consultant commented that epilepsy is extremely difficult to diagnose. In view of this we examined her medical records finding no record of hypothyroidism.
As I continue to wonder if my “faints” are related to Thyroid, Cortisol or chemical imbalance of some sort I obtained a Private blood test from Blue Horizon, following your advice to take before 9.00am prior to taking my daily levothyroxine. The results are as follows:
Biochemistry
CRP 4.15 <5.0 mg/L
Ferritin H 279.0 13 - 150 ug/L
Magnesium 0.98 0.66 - 0.99 mmol/L
Hormones
Cortisol (Random) H 650.0 6am - 10am 166 - 507 nmol/L New range
4pm - 8pm 73.8 – 291
Thyroid Function
TSH 1.71 0.27 - 4.20 mU/L New range & unit
T4 Total 96.7 66 - 181 nmol/L
Free T4 16.6 12.0 - 22.0 pmol/L
Free T3 4.71 3.1 - 6.8 pmol/L New range
Immunology
Anti-Thyroidperoxidase abs H 144 <34 IU/mL New units
Anti-Thyroglobulin Abs 20 <115 IU/mL New units
Vitamins
Vitamin D (25 OH) L 46 Optimal 75-200 nmol/L New range
Adequate 50-<75
Insufficient 25 -<50
Deficient <25
Vitamin B12 H 580 145 - 569 pmol/L
Serum Folate 15.50 8.83 - 60.8 nmol/L
I reported these to my GP, who requested a full blood count and Ferratin Blood test. The results are as follows - with “no action required”.
Basophil count 0.13 10*9/L (0.02-0.1) Above high reference limit
Plasma viscosity 1.94 mPa.s (1.5-1.72) Above high reference limit
Serum ferritin level (XE24r) 206ug/L (10.0-300.0)
I am now in a position of not knowing how to proceed. Looking at the Blue Horizon blood tests, I wonder whether high cortisol could be a factor – especially as the last “collapse” occurred during extreme temperatures. Or could the problems be thyroid related (which the GP does not accept)?
I am now unable to drive, and in a situation where we cannot plan holidays due to the difficulty of obtaining insurance. As I am a relatively active person this is very frustrating. At age 70 I hope I can find a solution, so that I can continue to enjoy retirement while I can.
Any help/advice would be welcomed.
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JigsawJill
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So firstly your TSH is too high. Should be closer to 1, probably under 1.
FT3: 4.7 pmol/l (Range 3.1 - 6.8) 43.24%
FT3 needs to be over 50% so you definitely would benefit from a dose increase.
Folate is only 13% of its range. Needs to be 50%+
Are you supplementing B12? Sometimes B12 can be high when folate is too low and not enough to use the B12.
Vit D too low, needs supplementing with D3 and K2.
I've had a lot of faintness, weird turns myself and beginning to resolve with better thyroid treatment and getting vitamins optimal. Don't believe your doctor when they say its not your thyroid!!
Thank you for your reply - all along I have felt that my thyroid could be the cause of my "dazed" feelings and collapses as the more I read about it the more I realise how it affects all your organs. Both the GP and Hospital Consultant have dismissed this, going down low blood pressure/heart route.
I am not supplementing B12. I have never taken any supplements relying on eating a good balanced diet. Having an allotment, we eat plenty of fresh green vegetables, and most of my food is cooked from scratch. Seeing the very low Vitamin D result (46), I have just started taking cod liver oil capsules but not sure if that is good enough? What would you recommend I take for Folate and Vitamin D3 and K2?
The difficulty I have now is persuading my GP to look at the FT3 figures again. Are you suggesting I should ask to have levothryoxine increased from 75 to 100?
Are there any relevant medical papers published anywhere that I could refer to the GP/Hospital Consultant?
Both the GP and Hospital Consultant have dismissed this, going down low blood pressure/heart route.
Low blood pressure is a hypo symptom, so it wouldn't be surprising if yours was low.
I have never taken any supplements relying on eating a good balanced diet.
Your diet could be the most perfect that is humanly possible, but you could still be deficient in some nutrients. Because it's not about what you put in your mouth, it's about what you absorb from it. Most hypos have low stomach acid, meaning that digestion and absorption of nutrients is difficult. Which is why we always advise testing vit D, vit B12, folate and ferritin, and supplementing according to results.
This is a good thread with references for getting an increase based on TSH. You definitely need an increase. Maybe try a different GP within the same practice? Your estimated dose is 1.6 x weight in kilos. That's a ball park figure though. I see you were left on 50mcgs for a long time which is terribly bad.
Cod liver oil contains Omega 3 which many people are deficient of so keep taking that.
As GreyGoose says, as Hypo people we suffer from low stomach acid which causes malabsorption, so despite your best efforts and amazingly fresh, organic vegetables you can still end up with low vitamin levels. Carry on what you're doing, but you will still need to supplement. Low vitamin levels will mean that we can't use our thyroid hormone properly!
Vit D & K2 best absorbed with oil. Some supplements are in liquid (oil) with dropper form that I take or there are softgels in oil.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Push for next increase in levothyroxine, perhaps initially 75mcg and 100mcg alternate days
Approx how much do you weigh in kilo
Which brand of levothyroxine have you previously been taking
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Request coeliac blood test done BEFORE considering trial on strictly gluten free diet
Prior to that I was on Mercury Pharma, and in May 2021 I was taking Accord. As my local Boots kept switching manufacturers I mentioned this to my GP as I had read that you should stick to the same brand. The GP disputed this fact. I switched to online pharmacy and Teva has been prescribed ever since.
What is the consensus of opinion regarding fainting? Is it feasible to consider that fainting is a symptom of thyroid and/or vitamin imbalance?
Given the rather complicated advice regarding supplements, should I consider requesting my hospital syncope consultant refers me to an endocrinologist?
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