Background info: 21. Female. Been on 100mcg of levothyroxine since Feb 2020. My last bloods (In Jan 2021) were at normal levels - if I remember correctly my TSH was 4, so the Doctor didn't want to up my levo dose even though I had been feeling very tired etc at that time - she suggested the symptoms may have been depression which is likely true.
Help: For years I have been having these weird headaches where rather than being painful necessarily, it feels more like a tight band round the back of my head - probably would be defined as being a pressure headache, but I'm not 100% sure that's what it is. And it makes my head feel kind of fuzzy and full and heavy. It makes me just want to go to sleep - as such I've taken to calling them "tiredness headaches".
Once I started taking Levothyroxine the headaches got a lot better - went from daily to maybe 1 or 2 a week.
My issue is that I have no idea how to treat this kind of headache. Taking a painkiller does nothing whatsoever, I imagine because it's not really a pain I'm feeling. The only thing I've found that works is taking a nap (has to be around 2 hours long to work). Or if i drink a lot of coffee I can push the headache (and the nap I'll inevitably have to take) back a couple of hours. However, this is not at all practical timewise, I am about to finish university and I do not have time to be taking a 2 hour nap every day. I also shouldn't be tired - I get 8-9 hours sleep a night, and I have a good routine. Also the headaches pretty much always come in the afternoon, around 2-3pm.
I was hoping that someone else might have experienced something similar, and if so have you found any good solutions to this kind of headache?
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ella_april
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My last bloods (In Jan 2021) were at normal levels - if I remember correctly my TSH was 4, so the Doctor didn't want to up my levo dose even though I had been feeling very tired etc at that time - she suggested the symptoms may have been depression which is likely true.
You are very undermedicated to have a TSH level of 4. Your doctor is very ignorant of how to treat hypothyroidism if she is happy to leave your TSH so high.
The aim of a treated hypo patient on Levo, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if, if that is where you feel well.
Was FT4 tested, and FT3? Those are the important tests, they are the thyroid hormones which tell us our thyroid status, TSH is a pituitary hormone which tells the thyroid to send more thyroxine when it detects there's not enough, a high TSH is asking for more thyroxine.
You need an increase in your Levo. Use the following to support your request for an increase in dose if GP doesn't offer one:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upperhalf of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
*
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional 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.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
wow okay thank you so much! That's all super useful stuff, I really appreciate it! I don't know my FT4 or FT3, but I will ring my doctor up tomorrow and see if they can tell me exactly what all the results were, so that I can then make a doctors appointment to properly discuss upping my dose. You've been so helpful thank you!
If FT4 and FT3 (unlikely) haven't been done, ask GP to check them, you may be able to get FT4 tested. These can always be done with a test with one of our private labs, one of which is an NHS lab which offers this test to the general public so should be acceptable to GPs although we shouldn't have to pay to get them tested.
with a level of 4 tsh it could be thyroid related but just another thought, I also suffered these type of headaches and eventually found a minor issue in the cervical neck was, for me, the cause. I have found that Ibruefen gel or any similar anti inflamatory gel rubbed in neck helps greatly. Might be worth a try if its not already something you’ve tried.
Obviously your results show you are under medicated
Request 25mcg dose increase in levothyroxine and bloods retested in 6-8 weeks
Do you always get same brand of levothyroxine
Which brand
What vitamin supplements are you currently taking
When were vitamin levels last tested
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
Ask GP to test vitamin levels
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
I don't always get the same brand, they just give me whatever they have i guess. I have rung my doctor and they are going to send me my blood test results so i can see exactly what was tested and the results, and then I will go from there. Will have a good read through everything you've posted there so that I can ask all the right questions.
I don't take any vitamin supplements, I've been tested once for vitamin D (Sep 2018) and it was a bit low so doctor said i should take vitamin d tablets for a bit to get that back up, which i did - i just recently ran out of vit d tablets and havent got round to getting more yet.
ella_april - yes I had exactly that tight band round the head headache before and after hypothyroid diagnosis - until I got my levels sorted and restored some health balance.
So go with the good advice here and you should see change for the better [it's often gradual, but looking back you see the improvement].
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