Attended my first, and probably my last, Endo appointment today. She told me that my “thyroid function is absolutely normal on Levo 75mcg daily”. I asked her why I still felt tired and she stated it was because I was “massively overweight”! I’ll admit I could do with losing a few stone but ‘massively’. I mentioned that I still have no real motivation or getting up and go’ to which she said I should have a review of my depression. She then started to talk about my disturbed sleep and decided to refer me to a ‘sleep apnea clinic’.
So to summarise I can’t have a Levo increase, I need a depression med review, I need to lose weight, my testosterone is low and I’m now being referred to a sleep clinic.
Can I take my self sourced T3 yet, or will it mess me up? The last time I posted I was advised to get a Levo increase but not much hope of that
Thanks Rob
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DaddyCool2001
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What a cheek she has stating you're 'massively overweight 'and this is the cause of your symptoms.
Another specialist who is clearly unaware that unexplained weight gain is one of the most common of queries.
Levothyroxine, if not on an optimum dose, can cause weight gain and it's nothing to do with the patient overeating.
Your results:
FT4: 12pmol/L [8-21] - too low
FT3: 4.4pmol/L [3.8-6.0] - could be nearer 6.
TPOAb: >600klU/L [<34] - you have hashimotos - the commonest cause of hypothyroidism i.e. antibodies.
She is going by your TSH alone, I believe to pronounce that your weight is the problem and not that both Frees are not towards the upper part of the ranges..
at that time your conversion of T4 to T3 was good.
These current results show that your FT4 is far too low at 31% through range, your FT3 is 27% through range, so they are still reasonably well balanced.
You need to get your FT4 much higher in range, so more Levo is the answer at the moment, not the addition of T3.
Of course, the Hashi's complicates things because symptoms and test results will fluctuate with Hashi's activity.
You don't need this endo, she's not doing you any favours and she doesn't understand much about treating hypothyroidism, I expect she's a diabetes specialist like most of them.
See if you can get your GP to understand more. Use the following information to support your request for an increase in Levo:
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
As for your nutrient levels:
Vitamin B12: 506ng/L [187-883]
This is a bit low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
pg/ml is the same as ng/L
I would suggest supplementing with a good B Complex containing methylcobalamin a few times a week.
Folate: 12.9ug/L [2.7-15.0]
This is OK and will be maintained by the B Complex.
Vitamin D: 86nmol/L [50-120]
This is on the low side.
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. If that was my result I'd be increasing my dose of D3 to improve my level.
Ferritin: 107ug/L [23-300]
Ferritin is recommended to be half way through it's range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
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
please email Dionne at
tukadmin@thyroiduk.org
Also ask Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who would initially increase Levothyroxine
New NICE guidelines published this month
Clearly show that dose should be increased (or started) to bring dose of Levothyroxine to 1.6mcg per kilo of your weight ..
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.
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Thank you for your amazing replies. Ironically she looked at my Vit D - 4000lu capsules and said how many of these do you take. I said one per day. She told me to cut it down to 2 per week as too much Vit D3 can be dangerous!
She told me to cut it down to 2 per week as too much Vit D3 can be dangerous!
She is correct. Excess Vit D gets stored and can lead to toxicity. However, you are not yet near the recommended level, let alone the level where toxicity can be a problem. The NHS lab which does Vit D tests for the public vitamindtest.org.uk/ tells us that a level of 220nmol/L increases the risk of toxicity.
It would be wonderful if doctors were taught about nutrition and what are good/poor nutrient levels. There's a big difference between 50nmol/L which is deemed "adequate" for Vit D by the NHS, and the 220nmol/L level increasing the risk of toxicity warned about by that NHS lab.
I would take the recommendation of the Vit D Council/Vit D Society over any doctor any day.
For some reason doctors are loathe to prescribe Vit D! It would have more credence if suggested testing but even then they don’t seem to realise that it’s often where in the range that is important. I called in my doctors recently to suggest I changed my vitamin D treatment. I’d been given Adcal/D3 and that was no improvement on taking just Vitamin D which was I think a higher dose but couldn’t remember the brand or anything so needed to see what was in my notes. She did listen and that calcium isn’t the answer for anything. She told me though that I could be given 800 iu but I think the dose I was on before was 1000 iu but she didn’t think I should double it but did say test in 3 months so that was a plus! I can’t remember the last time I felt the sun on my skin! So was hoping for a higher winters dose!
It is so obvious that, first and foremost, you need to increase in your T4 - Levothyroxine as you are barely " in the range " let alone in the upper quadrant !
Your body is able to convert well and as your T4 rises up through the range you will automatically see your T3 rise naturally, which is always the best way to go for full body synchronisation and overall wellness.
I see T3 as a last resort, after all other options have failed.
Currently this endo has failed you, and if your doctor is no better than this, suggest you buy some Levothyroxine and start doing it for yourself.
Increase by 25mcg daily, and a blood test after 6 weeks, to see and monitor T3 and T4.
I would think you'll need more than one dose increase, and as you increase you should start to feel some relief from some of the debilitating symptoms you are dealing with.
I'm, with Graves Disease, post RAI in 2005, and became very unwell some 8 years after this treatment, which I deeply regret as I now struggle with lingering Graves, thyroid eye disease and hypothyroidism.
I am now self medicating, having given up on both my doctor and endocrinologist and much improved thanks, in the most part, to this amazing website.
Hi DaddyCool2001, your results show you're very undermedicated. As others have pointed out, raised TSH, low freeT4 and low freeT3.
If you're thinking of self medication, my first advice would be to read the forum every day for a few weeks of months. If you're well enough follow up on some of the other websites, books and journal articles that are recommended. Get to the point where you've got a good understanding of how to read blood tests, and the knowledge to decide whether you want to start on the T3 you've got or buy T4 as a lot of people in the thread are suggesting. Raising freeT4 first is the more conventional and perhaps systematic choice to make, but there can be reasons to start with T3 instead.
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