I’m on 50mg if levothyroxine and suffer cramps in the legs, diarrhoea, hot flushes, hair thinning and weight gain despite rowing 4 times a week! (Post menapause!)
Am I under medicated and what tests should I ask for as I can see others get more thyroid function tests.
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Scullngbunny
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Yes you are undermedicated. We tend to feel better when TSH is around 1. I see you have been on 50 mcgs for 3 years now so I am thinking this was your starting dose as it is usually 50 mcg or 25 if you are elderly or have heart problems. You should have had a follow up blood test 6 weeks later so was that carried out? It takes 6 weeks to get a new dose fully into your system so you should have then been retested to see if that dose was right for you or if you needed an increase. If an increase was indicated you should have been given 75, increases are done in 25's and then tested in 6 weeks again and this repeated till you are on the correct dose for you. So see you doctor for a test and take it from there.
What tests are given is variable. Ideally you need a full thyroid panel of TSH, FT4, FT3, antibodies and useful to have Vit D, B13, folate and ferritin. The last 4 help your thyroid so much so if they aren't optimal then that can be a contributing factor to you not feeling well.
It's very rare to get all the tests done. FT3 isn't done often and yet tells us so much about what is happening. Consequently we often get tests done privately. All you can do is ask.
You sound quite energetic so you may, if low on T3 burning it up so that may not be helping you st the moment so you may need to cut back a little till we see what is happening.
Have a look at the Thyroid U.K. Site, they run this forum so you will find lots of info which I'm pretty sure your doctor won't have told you! Many doctors are unaware of the necessity of good vitamins levels or how to treat deficiencies so read up first as it may prompt you to ask more questions and make a list of things to ask you GP. Good luck!
I hadn’t realised the impact on my training. I’ve just tried to carry on - but often fall asleep when I get home!!
I’m racing in a couple of weeks - I am part of a quadruple sculling crew and two of us have under active thyroid! This could explain why we are not reaching our goals and going faster!
I am concerned about the vitamin deficiencies - but it seems there are so many to catch up on. I wonder if a dieticians advice would be worth getting?
I've seen some having success with dietians but I suppose it depends on how well they understand thyroid problem. In an ideal world I suppose we would wish to improve by diet alone, I can't as have many food intolerances so supplementing is the only wY forward for me and something's like vitamin D we would have to take additional supplements if we live where we can't do things naturally. May be combine both things, get levels up by supplementing and then see if you can maintain this through improved diet where you can. But firstcyou should get an improved dose and then address the vitamins. You can address them all at the same time though I would suggest starting on one and then adding in the others at 3 week intervals so you can make sure nothing is upsetting you in the way of supplements or if it should you now what it is and readdress that one.
50mcg is a starting dose but it is very unfortunate that doctors seem to be the least knowledgeable about treating patients who have hypothyroidism. They wrongly believe if the TSH is 'somewhere in range' that there job is done and don't increase dose of levothyroxine. The most important tests if patient has clinical symptoms is FT4 and FT3.
First thing - if we are on an optimum dose - that is a dose which makes us feel well with no clinical symptoms at all we are on the correct dose.
You need a Full Thyrid Function Test which is the most informative. GPs are instructed that TSH and T4 are sufficient but it is definitely not.
If GP wont do all of these (they should definitely test vits/minerals) you can get those not tested by a private lab. We have two recommended ones.
TSH, T4, T3, Free T3, Free T4, and thyroid antibodies. B12, Vit D, iron, ferritin and folate. Any deficiencies can cause symptoms.
50mcg of levothyroxine is a starting dose and you should have had 25mcg increments every six weeks till you felt better - not because the TSH is within the top part of the range). TSH should be 1 or below. Free T3 and Free T4 should be in the upper part of the range but rarely tested.
Tests should be at the very earliest, fasting (you ca drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards.
That’s brilliant - thank you so much. It’s too easy to accept the Dr as knowing!
My last blood test was unexpectedly done as soon as I left the GPs room!! So I had taken Levo dose about 6-7 hours earlier and it was mid day - which I guess is not going to give a proper result?
I want to gather all my information ready for next appointment which is end of January (earliest I could get).
I will look at private blood tests if I can’t get what I need and am also looking at maybe getting a referral for a private endo - I’ve found one near me in Guildford - a professor from the university of Surrey. Though i don’t have private insurance. But what price health!!
Check out his credentials first - is he a thyroid expert or just diabetes ? My daughter saw a Professor of Endocrinology at a London Teaching hospital who ignored her thyroid anti-bodies .... beware of a wolf in sheeps' clothing
Take Marz's advice and research the Endo. So many members have spent good money and been so very disappointed by the seemingly dismissive attitude that the patient's receives.
If you contact our main website, Thyroiduk.org.uk who have a list of helpful doctors/endos and he may be on it.
email dionne at tukadmin@thyroiduk.org and ask for a list. We have to do our own groundwork first.
Thyroid hormones run our whole metabolism, and if hypo everything lowers i.e. pulse and temp etc which gives us a whole range of clinical symptoms. Many complain of feeling cold etc. :-
We may not get all of them (thankfully ) but when we exercise (if not hypothyroid) our T3 reduces but then builds up again).
If hypothyroid and we exercise strenuously it reduces our T3 (the only Active thyroid hormone) and we can suffer more symptoms until we get to an optimum dose. Optimum means that we feel well with no clinical symptoms. Not based upon the blood test alone.
If you take your pulse when resting you may find it is lower than it would have been (if you've taken pulse before hypo).
It takes years before we are finally diagnosed, so it takes some time to build up slowly again.
Thanks Shaws. The heart rate is interesting - because as a former International in my sport in my 20s and 30s our training was based on heart rate. So Ive always known what my resting heart rate was and is. When young and fit it was 43-45 heart beats a minute. Until 18months ago it was still around 47-49. But then in September 2015 it suddenly leapt to late 50s - where it’s stayed. (I wear a Fitbit). I remain concerned about this.
I have read that heart and brain needs the most T3 and with us having hypothyroidism this leads to low or very low pulse/temp before being diagnosed s. As dose is increased so should both pulse/temp. Sometimes it doesn't come back to normal but we feel warm and pulse rises.
If under-dosed I believe our heart tries to work harder due to thyroid hormones being too low.
I know athletes' pulse rate is usually lower than what would be normal for non-athletes. Your heart rate may have increased if your thyroid hormone isn't optimum so heart tries harder.
Aim for a TSH of 1 or lower with FT4 and FT3 in the upper part of the range.
You are under medicated and need 25mcg dose increase. Retesting 6-8 weeks after each dose increase. This dose increase should repeat until TSH is just under one and FT4 towards top of range and FT3 at least half way in range
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Highly likely to have very low vitamin levels as result of under medication and especially if you have high thyroid antibodies. This is Hashimoto's also called autoimmune thyroid disease
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3
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 money off offers.
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