I was diagnosed hypothyroid 5 years ago and am currently on levothyroxine 75microgram/3 days a week and 50microgram/4 days a week. For the last 12 months I have been steadily gaining weight and feeling crap, to the point where I look 9 months pregnant, so I upped my dose slightly to 75 every day (my prescription quantity allows me to do this) to see if it helped.
It hasn't made a difference. I still have all the symptoms of low thyroid – dry skin, low energy, permanent cough, etc – but my annual blood test at Christmas was “normal” – only TSH was tested.
3.4 miu/L [0.3 - 4.2]
So, I ordered a private blood test from Blue Horizon. The results are:
Thyroid Function
TSH 0.81 [0.27 - 4.20 mIU/L]
Free T4 13.1 [12.0 - 22.0 pmol/L]
Free T3 4.24 [3.1 - 6.8 pmol/L]
The percentages on my results are not great. FT4 is 11% and FT3 is 31%. What I am unsure about is why my TSH is low when the FT4 is so low in the range?
My cortisol was tested as part of the blood screen. This was 502 – the blood was taken an hour after getting up, before food/drink. I am wondering if this suggested my adrenal function is low? The BH doctor flagged it up as needing further investigation, but getting to see a doctor at the moment is likely to be difficult - assuming they even take me seriously.
Is it worth ordering a 24hr saliva test? I don't want to do this unecessarily, as money is tight right now.
Thanks in advance to anyone who takes the time to offer advice on my results, and what I should do next…
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raggydolly
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Were both blood draws done at the same time of day? That's a huge difference in TSH, and the NHS one looks more likely to be the correct one, given the level of your Frees. Do you have Hashi's?
Was there a range for the cortisol? It's always worth doing a 24 hour saliva cortisol test, but whether it's essential at this point, I don't know.
So, it's high, but not excessively so. If I were you, I'd just wait and see what happens next test. It's not as if a doctor is going to do much about it, anyway. They tend not to know much about adrenals.
So, it's just possible that the difference in the TSH between the two tests is due to the Hashi's. Levels do jump around. And, as the penny-pinching NHS won't test the Frees, we can't really compare the two tests.
A TSH over 3 certainly did justify an increase in dose - the dose you were on was stupidly low, anyway - but the slight increase you gave yourself wasn't really going to make much difference to how you felt. 75 mcg daily is still a small dose.
Do you take biotin, or anything containing biotin?
Totally inadequate! As I said to someone else not five minutes ago, they only do the bare minimum these days, and to hell with patient well-fare.
There are possibly things you should be taking, yes. But, you should only take what you need. So, to that end, try and get your basic nutrients tested: vit D, vit B12, folate and ferritin. Based on the results, it's possible to work out a supplement regime to help you feel better and get your body using thyroid hormone more efficiently.
I'll see if I can get a test for Vit D, B12, folate and ferritin. My vit D is probably OK at the moment with all the sunshine, but in the past my iron levels have been abysmal, so they are probably low now.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Low ferritin
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.
Totally agree and I'm living proof! I live at a sunny country, I spent 6 months a year in the sun, I am pretty tanned for a white guy. And the greatest I have seen my D levels is 27 on a range of 30-100. And this with supplements.
You will have a fight on your hands as they will almost certainly only be looking at low TSH
Essential to test vitamin D, folate, ferritin and B12
When were these last tested?
Also ....guidelines by weight might help push for dose increase
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I'll try and get a doctor's appt and ask for a dose increase. Given I'm about 3 stone heavier since I was first prescribed... on weight alone, I need a higher dose!
I'm not on a gluten free diet. I was but was seduced by bread again. Time to jump back on the wagon I think. I'll ask the doc to test for coeliac first.
I am having an NHS blood test tomorrow. I told the doctor I just spoke to my last TSH reading of 3.4 was too high and he was adament it was perfectly normal. I have very little confidence he'll increase my dose after this latest blood test, but I can but try. He has at least agreed to test my iron levels, so not a total washout.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Are we sure that the 1,6 per kg is for everyone? Seems a bit much. I have had hashimoto for many years, without any issues or symptoms (untill last year that is) and the most I have been on is 1,2 per kg. And this when I was veeeeery fat. Can it be that the 1,6 is for people with no thyroid function (thyroidectomy or advanced hashimotos)?
I think 1.6 micrograms per kilogram is ridiculous - especially with rounding to next 25 microgram tablet multiple which can make it higher still.
A number of years ago, I produced a spreadsheet using published formulas for dosing. I included warnings that the only circumstance in which it really makes sense is post-thyroidectomy.
But we see people taking significantly less, and others significantly more.
Fundamentally, it seems appropriate to start under-dosed rather than over-dosed. And increment to reach a sufficient dose without flipping over into over-dosing.
If you want to be comfortable at home, it is sensible to turn up the heating a bit. If that isn't enough, turn it up a bit more. It is not sensible to set it on very high, find the room gets far too hot, and have to open the windows, turn heating off, etc., to reduce the temperature.
However, if the whole house has been unheated for weeks in the winter, it is also not sensible to play around with tiny doses.
In naval gunnery, a standard technique was to fire a shell at an enemy, If it falls short, increase the range until you are sure it won't fall short, and fire a second shell. You should then have two points straddling your target and can apply mathematics to very accurately target your third shell.
The big difference is that firing a shell doesn't actually change the system. Increasing a dose so that someone goes from under-dosed to over-dosed has profound impacts on the entire body. You do not have two ranging shots from which you can work out how to target the third. You might know that dose 1 was inadequate, and dose 2 excessive, but there is only guesswork as to where in-between the optimum dose might lie. This is particularly the case when the over-dose is such that the person reduces it before a steady-state was reached.
"My cortisol was tested as part of the blood screen. This was 502 – the blood was taken an hour after getting up, before food/drink. I am wondering if this suggested my adrenal function is low? The BH doctor flagged it up as needing further investigation, but getting to see a doctor at the moment is likely to be difficult - assuming they even take me seriously. " Your cortisol isn't especially high but as you have other symptoms like weight gain then it is worth getting further testing done. It won't be from low adrenal function but rather over active adrenal function as cortisol is secreted by the adrenal glands & it could be that they are secreting too much. Are you having issues with sleeping, your weight gain is round your tummy but still have skinny legs & arms? Have a look at Cushing's disease. Ask your GP to do a 24 hour urine test which will show if your cortisol is high throughout the day. It you do the 4 point cortisol saliva test then it's often better to do them late at night on 4 consecutive nights rather than through the day. Cortisol should be at it's lowest point at night but in Cushing's it is high. Hopefully you wont' have it as it's not a nice condition to have.
I'll try and get my Levo dose sorted before I battle for any more tests. This doctor is nowhere near as nice as my last one, sadly.
I have Hashi´s (diagnosed in 2002) and ended up with slightly highish cortisol throughout the day after taking high doses of prednisolone for only a few weeks (confirmed by saliva test x 4 times/day). I only recently found out they were slightly elevated as I had assumed the steroids would have suppressed my own cortisol production. But it turned out the opposite was true.
After weaning off the steroids, I gained 20 kgs in eight weeks (after finally managing to lose weight using supplements for insulin resistance) and my previously high in range blood sugar levels ended up above range (which also raised insulin levels). Doctors of course claim it´s impossible to gain that much weight from simply taking a drug, and that I must be overeating and not exercising enough.
My own experience is that even slightly elevated cortisol levels will make you gain a lot of weight (by causing insulin resistance/diabetes 2 as well as lowering other hormones such as sex hormones - both my estradiol and my progesterone levels ended up much lower than they had previously been on HRT). My DHEA levels ended up looking like levels you´d expect in someone 20 years older than me...so it´s obvious cortisol is a very powerful hormone that will affect and suppress almost every other hormone in your body.
Cortisol can really wreak havoc on your body, both when elevated and lowish.
It seems high cortisol increases conversion from T4 to reverse T3 rather than free T3. Even if rT3 is no longer considered the problem it was believed to be (that is, blocking FT3 from entering cells), less free T3 available to cells means your metabolism slows down.
There are several supplements that lower cortisol. I used to combine several, but then found Cortisol Calm by Pure Encapsulations which contains all of the adaptogens that I used to buy separately. It works great, and I can now get a whole night´s uninterrupted sleep when I take it with supper.
Only disadvantage: all European suppliers were out of stock so I had to order it from the US which cost me a fortune in import duties and taxes...
Not in my experience; that is, not if you need it = have highish cortisol. I´d imagine that if you take it and have low cortisol, you would end up worse.
Your comments about the effects of cortisol are very interesting with regard to weight gain - thank you. I'm sure my metabolism has slowed down, as my lifestyle hasn't changed a bit. The doctor this morning had the nerve to suggest my lack of energy might be caused by Covid stress. Err no. I'm lucky in that my life hasn't changed at all in lockdown, as I've been working from home for years and I'm an introvert haha.
I Googled the supplement you mentioned and yes, it's unavailable in the UK. Amazon US sell it but don't ship here. Ugh.
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