Hi everyone, after a 6 month wait, I finally got my appointment for endocrinology. Saw a nurse practitioner not a doctor. Not that I’m not complaining about that (I’m a nurse myself)
My GP increased my levothyoxine 6 months ago from 75mcg to 100mcg (was on 75 for 20 years) at my insistence due to symptoms (shortness of breath on exertion, palpitations, morning pressure headaches and night sweats) after a few weeks they all subsided and for the 6 months I have been fine
That is except for the fact I got Lyme in Aug and took a gruelling month of doxycycline, and all the consequences of a suppressed immune system following that now not knowing if it is completely eradicated.
Anyway, nurse practitioner wants to reduce the dose back to 75mcg to “challenge” my pituitary because the TSH which has always been low is now suppressed completely.
I suspected this would happen .... my blood results don’t match my symptoms, the T4 has been dropping gradually and the TSH is always low.
The nurse practitioner did loads of endocrine blood tests which she says are all normal and she’s organised a scan on my thyroid which is in two weeks.
I am worried, the 100mcg has given me such an improvement and I can’t see why I have to drop again.
She says if I continue on 100 I risk AF and osteoporosis.
No one in my family has osteoporosis and I have been on an oestrogen patch since age 45 (I’m 60 now) and my resting pulse hasn’t changed at all
Any help would be appreciated
Thank you, Louise
Written by
Countrylou
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Ask for FT3 to be tested at the same time as FT4 and TSH. Your TSH is suppressed because your pituitary is satisfied it doesn't need to signal the thyroid to make hormone. Your FT4 is low so doesn't indicate overmedication. It the FT3 which tells us if we are overmedicated.
You have felt better on 100mcg, you know you have symptoms on 75mcg. Refuse to reduce your dose until all 3 tests are done at the same time and if the FT3 is within range refuse a reduction. Tell the nurse practioner you won't be her Guinea pig. You know your body, you are not a number, you are a patient who knows her own body.
I don't behave a reference about low TSH not causing AF and osteoporosis, hopefully someone else will and link to it.
Also, you can quote the article by Dr Toft who states in Pulse magazine, the magazine 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 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/nurse practioner.
Before agreeing to any dose reduction you need FULL Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Low vitamin levels can lower TSH too.
What vitamin supplements do you currently take?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Low TSH doesn't mean you are over treated......only over range high FT3 would do that
The nurse practitioner did loads of endocrine blood tests which she says are all normal
Did you get a print-out of these test results? You obviously can't just take her word for them being 'normal' because she obviously knows nothing about thyroid - 'challenging' the pituitary being one of the more insane ideas of those that don't know what they're doing. And, in any case, 'normal' just means 'in-range', which is not the same as 'optimal'.
If you live in the UK, it is your legal right to have a copy.
She made me have the blood tests after the consultation because GP hasn’t repeated them after the increase then she rang me the following day.
It meant that I had the thyroxine as usual that day and I had no opportunity to actually see the results.
I have thought about it long and hard and have decided to wait until I have the scan in 2 weeks then see my GP for the results (as they will be on the electronic portal)
I am very reluctant to drop... why fix something that ain’t broke!!!
Then don't do it. Doctors are just there to advise you, not to dictate to you - and this wasn't even a doctor. There is no law that says you have to take their advice. Besides, there is no good medical reason to reduce your dose. Just someone wanting to see what happens to your TSH is not a medical reason. And, as you took your levo before the blood test, the results are useless, the test is invalid - especially as the time of day it was done will automatically mean that your TSH is at its lowest. A complete botch-up of an appointment, if you ask me, waste of time and money. No wonder the NHS is in a mess!
Recommend wearing a Fitbit to show your activity levels and resting heart rate
This has proved very effective when my GP gets fixated on suppressed TSH......my resting heart rate is 54-58
On any lower dose .....it drops under 50
I ALWAYS get my own full testing under correct timings BEFORE any appointment.....and take them to the appointment
If taking any supplements that contain biotin (e.g. Vitamin B complex) you need to stop these a week before any blood tests otherwise tests are invalid .......a good way to avoid surprise afternoon testing
In your shoes I would refuse to reduce dose. Her comment about AF and osteoporosis is based on medical myth. Unfortunately, I imagine her decisions about treatment are likely to be based on flow charts that she isn't allowed to ignore, and she is probably not allowed to diverge from them. And the "risk" of AF and osteoporosis with low TSH is probably hard-coded into their algorithms. It is probably easier to move a mountain than to change an algorithm.
We're in the realms of "Computer says No" here, not in the realms of supposedly humane and compassionate medicine. So expect a struggle.
Don’t reduce if you feel well. Asking you to do so to ‘challenge your pituitary’ (is that a medical procedure?) is tantamount to torture. They wouldn’t ask a diabetic to reduce their insulin to ‘challenge their pancreas’ I’m sure. Or someone with a broken ankle not to have it strapped up to ‘challenge the joint’! It’s preposterous. She is asking you to make yourself ill for the sake of some weird medical experiment she has conjured up to keep the computer screen happy. She’s clearly more interested in that than the real thinking, feeling human being sat in the room.
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