I was diagnosed with Hashmotos in 2019, 2 years after having my first child, with a TSH level of 40... Have been on varying doses of Levothyroxine since, including during my second pregnancy - I had to up my dose but managed to keep TSH in a good zone, for which I'm very grateful.
My youngest is now 18 months old and for the past year, my TSH has been extremely low - past 3 results at 0.03, 0.04, 0.03. I see different providers at my GP surgery, some NPs, some GPs. They all seem baffled and want me to reduce my Levo dose to try to rectify these numbers.
I am currently taking 150mcg/daily, very strict about taking it first thing and not having anything but water for 2 hours following. I've never missed a dose. I feel terrible at this dosage. I was on 175mcg before and felt better but reduced it due to the TSH levels - but at the lower dose of 150/day for 2 months, the results have not improved.
In spite of the TSH results, my symptoms are all Hypo - massive weight gain, exhaustion, hair loss, terribly dry skin, very cold all the time. I am sleeping in a jumper and thick socks under a winter-weight duvet and still feel cold! I'm using a lint roller on my pillowcase each morning because it's covered in hair... I'm really watching what I eat but still obese, and far too exhausted to exercise - or, more importantly, to be an active mum to my small children.
One sympathetic GP tried to refer me to an NHS endocrinologist for answers, but they refused the referral saying Hashimoto's should be managed by the GP!
Can anyone offer any advice? I feel increasingly desperate and worried that I will never get back to any degree of good health.
Thank you in advance!
Written by
Jacula
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It is absolutely wrong to dose by TSH. It is not a thyroid hormone, it's a pituitary hormone, The thyroid hormones are FT4 and FT3, and it's the FT3 test result that's the most important as T3 is the active hormone that every cell in our bodies need.
So what you need to do is basically ignore the TSH (which is useful for diagnosis of hypothyroidism but not much use for monitoring once on Levothyroxine) and look at FT4 and FT3.
Generally, most hypo patients on Levo only feel best when TSH is 1 or below with FT4 and FT3 are in the upper part of their reference ranges.
When you have your thyroid tests done are you getting FT4 tested as well as TSH? I doubt you're getting FT3, this is rarely done.
If all that is being tested is TSH and your GP insists on adjusting dose by that then you wont get well.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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 confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
Ask for FT4 and FT3 to be done, the lab may refuse but if they do then test privately with a home fingerprick test from an NHS lab - Monitor My Health at Exeter Hospital - which does TSH, FT4 and FT3 for £26.10 - details here:
It's also important that nutrient levels are optimal for thyroid hormone to work so if they haven't been done you can also do those with a home test, most budget friendly way is with a full thyroid/vitamin panel (Monitor My Health don't offer a test for thyroid with vitamins) so instead of the MMH test you could do either
You are welcome to come back with your results, include the reference ranges and if you have vitamins done then include units of measurement for Vit D and B12 as well, and members will comment and help you with the way forward.
Once on any form of thyroid hormone replacement it is essential to be dosed and monitored on your Free T3 and Free T4 blood test results and not just a TSH which I know is likely all you get in primary care, with maybe, once in a while a T4 reading.
The TSH was originally designed and introduced as a diagnostic tool to help identify someone suffering with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement.
T4 - Levothyroxine is basically a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D so we should also get these bloods run along with a TSH, T3. T4, antibodies and inflammation to have a better understanding of how your body is utilising the T4 - Levothyroxine.
Having Hashimoto's throws an extra spanner in the works as you are liable to experience erratic thyroid hormone production and ' swings ' in symptoms as this auto immune disease systematically attacks and further damages your thyroid gland.
I read that some people with this AI disease find the research and suggestions of Dr. Isabella Wentz helpful as it does seem that food intolerances can play a big part in the progression and symptoms of Hashimoto's. thyroidpharmacist.com
You can read further around all things thyroid on the Thyroid uk website who are the charity who support this forum and where you will find details of private companies who can run the private blood test if your doctor is unable to help you. thyroiduk.org
This is where we all start off when we come on here looking for help and once with the results and ranges you start a new post with the results and ranges and you will be talked through your next best step to better health.
One sympathetic GP tried to refer me to an NHS endocrinologist for answers, but they refused the referral saying Hashimoto's should be managed by the GP!
That is possibly the best advice you'll ever get! I know GPs think that endos are the specialists but they really aren't. And, the reason they don't want hypo patients is because they know next to nothing about thyroid - especially Hashi's.
I realise your GP might not know much, either, but that is why you need to learn as much as you can about your disease and take charge - GPs are often more maliable than endos.
Sounds to me as if you are a poor converter, being on that much levo and still having symptoms. Your TSH is probably low because your FT4 is high, but that doesn't mean that your FT3 is high enough to make you well. Hashi's people are often poor converters. But, you won't know how well you're converting unless you get your FT4 and FT3 tested at the same time.
By the way, what time do you usually have your blood draw? TSH is highest early morning, then reduces throughout the morning until it's at its lowest around midday/early afternoon. No doctors seem to know that - or if they do, they're keeping very quite about it!
Thank you all for the great replies! I will call the GP in the morning and find out if they have any numbers for FT4 or FT3 that I can share. I will also find out if I can use the nurse there to do a blood draw for the private blood tests - sort of doubt I'd be able to get enough from a finger prick test kit, but am I wrong on that?
I actually have Isabella Wentz's book Hashimoto's Protocol and have implemented a lot of her diet recommendations in the past few weeks - great to know she is worth listening to
Again, many thanks - I feel optimistic for the first time in a long time.
Only NDT stopped my feeling cold all the time ( I was cold for decades) probably down either to the T3 or T2 in it. The T2 is important in mitochondrial function it was thought to be inactive but this is not the case. The T3 would be broken down into T2 as well and it’s not known if the T2 in NDT does anything or if there’s enough to have any effect. Whatever, it banished the permanent arctic for me.
Another book you could consider reading is "Your Thyroid and how to keep it healthy", by Dr. Barry Durrant-Peatfield. In opposite to the medical establishment (which of course doesn't like him very much, I guess) he has been or still is very successful in treating thyroid disorders. This is, at least, my conclusion after having read half of the book (I’m a slow reader).
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GP not happy about very low TSH (on NDT) - advice?
Very low TSH 0.01 - feel terrible/ help reducing meds.
TSH below low reference level
Very low ferritin level
