I have just learned from my GP that I have had a subclinical hypothyroid since 2020 (see test results above). I am almost 40, have had 2 kids and am reasonably fit and healthy. I am trying to understand what's going on. I tried 25 mcg Levothyroxine (Mercury Pharma) for 3 days and found the side effects to be too much to handle so have come off it (much to GP's surprise that I could have felt any effect in that time) but have been feeling rubbish since and am wondering what to do now. I have found this forum to be invaluable for my initial research into the condition and would be grateful for any observations/recommendations you may have on the following:-
I have been going to the doctors since then complaining of the same things:
Since Spring 2020- date:
Fatigue - wake up feeling like I haven't slept at 6:30am & then exhausted after kids go to bed at 8:30pm
Poor quality sleep & can regularly wake at 4:30am and not get back to sleep
Dry mouth - wake up every night feeling thirsty, then drink, then can't get back to sleep
Heavy and long period
PMS
Vulnerable to sinus infections
Swelling abdomen in general, but even more so around ovulation
Tingling feet
Tingling tongue
Slow digestive system
regular ringing in my ears
Hemorrhoids
Feeling cold & shivery
Alcohol (a glass of wine) intolerance - sore head within a few hours, hangover next day
Sometimes felt swelling/pressure in my throat
Panic attacks following eating spicy/soya/rich food - feeling of nausea then into a panic
Loss of libido
My GP prescribed 25 mcg Levothyroxine 2 weeks ago.. I took it for 3 days and had good and bad results:
Better quality sleep, more energy
Drinking lots more water
Increased mobility - shoulders, standing up straighter
Digestive system working more quickly
Reduction in abdomen inflammation/bloating
BUT:
Awareness of Pumping heart when I hadn't been overly exerting myself so wouldn't normally expect to feel heart pumping - sitting to eat lunch or after kids gone to bed
Change in appetite - didn't want usual morning caffeine/breakfast as I felt I had enough energy for the day upon waking but ate something anyway even though I didn't want it, had a light appetite later on in day
Sudden Sore heads
Shivers
Pounding behind eyes - needed to wear glasses - blurry/ had to concentrate to try and focus vision to normal
Teary
Panic attack after palpitations at bed time
Eye discharge - sinus
After 1 week of stopping Levothyroxine:
Back to feeling weak and heavy when I wake up
Back to feeling tired, cold during day
Back to not drinking very much
Back to inflamed abdomen / water retention?
Loss of appetite - Potentially losing weight - 10st 1lb (20 March) - 9st 7lb (now)
Poor sleep
Irritable
I have no idea if Levothyroxine was appropriate, whether it was too much/too little/whether side effects would have been temporary/if it didn't agree with me.
It was the pounding heart and panic attack that ultimately lead to me coming off it. I previously have had low blood pressure but my recent reading was 112/70.
Has anyone else felt like this on Levothyroxine?
I have just sent away an Advanced Thyroid Function test for hormones, antibodies, vitamins and minerals. I'm going to see a reflexologist and a nutritionalist. The GP is doing more blood tests tomorrow. I am concerned about Hashimotos, Lupus, Perimenopause. Is there anything else I should be considering/ doing next?
Many thanks in advance.
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Sunbeam12
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I should also add that I have been feeling weird pin prick pain in shoulder blades, itchy skin, joint pain, tingly tongue, tingly feet, chills, that have come and gone since coming off Levothyroxine.
Further thought - is it just that my vitamins etc are depleted and cannot support thyroid function? If I can boost these, will subclinical thyroid resolve by itself?
Things like Mean Corpuscular Volume and Red cell Distribution Width help to cross check when someone concurrently has iron deficiency and low B12 and/or folate. And, despite consisting of many actual tests, it is relatively cheap and done in vast numbers.
That site is very useful for lots of test information.
I wouldn’t say that was subclinical—strictly, that means “no symptoms”, and you most definitely have those!
Your TSH is rising—that means things are slowly getting worse and your thyroid is struggling.
The 25mcg levothyroxine is an interesting one—we see people struggling on that quite a lot. It’s because 25mcg tends to make things worse in those who still have some remaining thyroid function—your doctor should have started you on 50mcg as a minimum (assuming you don’t have a heart condition).
Your thyroid is still capable of making thyroid hormone. Your pituitary is having to shout very loudly at it (think of TSH as a nagging hormone—the higher it goes, the louder it’s shouting ) but it’s just about managing to make your thyroid produce some thyroid hormone.
But it’s not enough—that’s why you aren’t feeling well and most likely will start to feel worse over time.
When doctors start hypo patients on too low a dosage of levothyroxine, its just enough to trick the pituitary into thinking it doesn’t have to shout quite so loudly at the thyroid. So it doesn’t, and the thyroid doesn’t make as much thyroxine.
The net result is actually a lower overall level of thyroid hormones—the amount your thyroid makes plus the 25mcg is actually lower than what you’d make without taking the 25mcg. That’s why taking it is making you feel worse (plus you may be sensitive to the brand—wasn’t Teva, was it? Lots of people don’t get on with it…).
So the answer—counterintuitive though it may sound—is to start on a higher dose of levothyroxine. At least 50mcg. It doesn’t top up the production of a failing thyroid, it replaces it. So 6 weeks later you will most likely need an increase in dosage—your doctor should know that blood tests are needed 6-8 weeks after starting levothyroxine but it sounds like your doctor is a bit hazy on how it works (I know, sounds bonkers but we find it to be true more often than we’d like).
Over time, hypothyroidism will cause a drop in most nutrients as it reduces gut absorption, so yes, you’re right—in due course you need to focus on getting those to the right levels. But without starting on a decent dosage of levothyroxine you’ll be fighting a losing battle.
Thank you for your detailed response Jazzw- that is very interesting on the 25mcg point.
I am not aware of any heart condition but I started wondering when I felt the palpitations. I have always had low blood pressure. My mum has heart disease and was diagnosed with high blood pressure when she was 32. My maternal grandmother developed angina and hypothyroidism in her later years. From my understanding hypothyroidism can lead to high cholesterol so I am concerned about my heart health through my genetics and current thyroid health. What kind of things should you test to check your heart before you take Levothyroxine?
Understandable you should worry with that history. But you’ve no signs of high blood pressure at the moment—quite the opposite—and for all doctors bang on about cholesterol, there isn’t as much evidence as you’d think for high cholesterol causing heart disease.
Heart health isn’t really a blood test thing (unless you’re in the throes of a heart attack) so best thing to do if you’re worried is to ask for an ECG so that you can put your mind at rest. But the palpitations were probably low thyroid hormone related (coupled with low ferritin). Obviously I can’t be sure but it’s commonly reported here as a hypothyroid symptom that sorts itself out once on the right dosage. Iron deficiency anaemia would also cause palpitations.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thanks SlowDragon. I'm neither vegan or vegetarian.
I think from memory it was suggested that I take iron tablets a few years ago but I was reluctant having had constipation with them in the past - so I think I took Floradix instead but ultimately gave up as I didn't think it was helping.
Thanks for sharing all the links - great to have access to such in-depth knowledge.
Thanks Slow Dragon, I will sort out diet and higher dose of Levothyroxine. It was Mercury Pharma. It's heartening to know that I can feel better with a few tweaks.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Mercury Pharma does contain Acacia, which some people react to
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
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.
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
I am not taking any vitamin supplements at the moment - I know I really should! I'll get on to it once I get the blood tests out of the way so I don't skew the results.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
If your Grandma had hypothyroidism, and (symptoms sound like your mum possibly too) - strongly suggests autoimmune thyroid disease
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
Standard starter dose of levothyroxine is 50mcg
Bloods should be retested 6-8 weeks after each dose increase
Recommended that all thyroid blood tests early morning, ideally just before 9am 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
Try breaking tablets in half or even quarters,have struggling for 4years attempting to take level.....seem to cope with 12.5 every 2 days lol....my dad couldn't take it either and lived with it all died at 92. All I'm say it's 'not one size fits all' some people are super sensitive to the drug and once on it its hell to stop so start with a quarter (6.25) for few days and see how you get on . Good luck
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) but it’s just about managing to make your thyroid produce some thyroid hormone. 
Feeling awful
Levothyroxine Side Effects
Advice on Taking Levothyroxine 
