Headaches - just started a week ago - is it hyp... - Thyroid UK

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Headaches - just started a week ago - is it hypo related

Sunflower535 profile image
23 Replies

Last Thursday I developed a really bad headache - I was at a wedding and the music was loud and I blamed that (I don't drink so it's not related to that). The headache has never left - I have had it every day since although not just as bad.

I believe I have Hashimotos although never diagnosed - just told by yourselves on here. Last test had antibodies >500 (haven't the records to hand to I think it was either >500 or >600

My other results are as follows - taken a month ago

TSH - 2.36 (0.27 - 4.2)

T4 - 21.5 (12-22)

They won't test T3

The best of it is that before the wedding I was starting to feel a bit better, not 100 percent but a whole lot better than I was. I have gone gluten free this past month, but I did slip the day of the wedding by eating some stuffing. I have been very strict up to that point - as I was starting to feel a bit more normal again and was convinced the gluten free diet was helping.

I used to suffer from migraines years ago but when my periods stopped 10 years ago (Im almost 60 now) the migraines ended. I haven't had a headache since.

Could this ongoing headache be thyroid related. The tiredness has resumed and I have started to feel the palpitations and anxiety slip back although I have a daughter heading across the water to university and I know I am stressed about that. I know my TSH isn't right yet but I didn't want to go back to the doctor till my next bloods in October. I think they think I am a hypochondriac!

Just wanted to know is headaches part and parcel of hypothyroidism.

Thanks in advance.

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Sunflower535
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23 Replies

So sorry that you feel unwell. Headaches are very unpleasant especially when they continue.

It’s not really possible to make a useful comment without an FT3 result. Your FT4 is high at almost top of range. It’s possible you’re overmedicated which can be a cause of ongoing headaches.

That said, if your FT4 is that high and your FT3 (unknown) is low, that could indicate a conversion problem. Low T3 is also a precursor of nasty headaches.

You will probably have to get a private home test for FT3. That involves having TSH and FT4 done at the same time. Without that result, anything said is pure speculation.

Please post your results when you have them.

Hope you feel better soon 😊

Sunflower535 profile image
Sunflower535 in reply to

Thanks - I will have to get my T3 tested privately then. Can't afford it at the minute but will put it on the list - maybe before I get my NHS ones done and that way I can push them maybe!! They won't do the T3 at my practice!

in reply to Sunflower535

That’s disgraceful but not unusual. The cost is very little to the practice. It’s often refused because GPs are afraid that it will open a can of worms.

When you have your results everyone will be happy to help and advise on ‘next steps’

Sunflower535 profile image
Sunflower535 in reply to

Thank you. You have been so helpful.

in reply to Sunflower535

Hope everything gets sorted for you 😊

greygoose profile image
greygoose in reply to Sunflower535

Unfortunately, even if the doctor requests it, the lab can refuse to do it. It's crazy that a lab technician can over-rule a doctor but that's the way it is in the NHS. None of them seem to know what T3 is or what it does, and make all sorts of excuses for not testing it.

Sunflower535 profile image
Sunflower535 in reply to greygoose

But will they take heed of a private result do you think?

greygoose profile image
greygoose in reply to Sunflower535

Depends on the doctor - some do, some don't.

greygoose profile image
greygoose

To have a TSH that high, with such a high FT4, more than likely means that your FT3 is low and that you are a poor converter. But, you would need to get it tested to confirm.

Sunflower535 profile image
Sunflower535 in reply to greygoose

Thanks - as I said to Everywhere2 I will just have to get tested privately as they won't do it at my practice. Appreciate your reply.

SlowDragon profile image
SlowDragonAdministrator

Have you had dose levothyroxine increased to 75mcg yet?

Which brand of levothyroxine was 50mcg

If you have had dose increase in levothyroxine is the extra 25mcg the same brand

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Sunflower535 profile image
Sunflower535 in reply to SlowDragon

My dose is still 50 mg - I thought I would just leave it till I get my next bloods done in October and if not feeling bit better by then I will push to get the dose put up a bit. I thought I would give the 50 mg a bit longer and with cutting out gluten and to be honest a good bit of dairy too that might help without the larger dose. The brand I am on is Mercury Pharma and I don't think I have had any issues with it - it's been the same one since I started it.

SlowDragon profile image
SlowDragonAdministrator in reply to Sunflower535

50mcg is only standard STARTER dose

How long have you been on just 50mcg

Approximately how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

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.

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Sunflower535 profile image
Sunflower535 in reply to SlowDragon

I am on 50 mg 9 or 10 weeks now. I am 8st 8 which is about 55kg. I will have to pick up courage and ring GP again. thanks for all this. I will print out and take with me when I go. I know I need to persist, hard and all that it is!. Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to Sunflower535

Say you have increasing return of hypothyroid symptoms and would like to bring forward blood test

Book early morning test, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

When were vitamin D, folate, ferritin and B12 levels last tested

Sunflower535 profile image
Sunflower535 in reply to SlowDragon

I got my vitamin D checked earlier this month through the NHS Vitamin D online service that someone on here recommended. The result is as follows.

My level 197.8 mol/L - they don't give ranges but the guide says:-

below 15 is severe deficiency

15 to 30 - deficiency

30.1 to 50 is insufficiency

50.1 to 220 - adequate

risk of toxicity - above 220

As for Ferritin, Folate and B12 - they were last tested in February. I probably would need these tested again. That time the folk on here said that my Folate was low - I have been taking B Complex for a few months now.

SlowDragon profile image
SlowDragonAdministrator in reply to Sunflower535

So vitamin D a bit high

How much vitamin D are you taking

Reduce dose a bit

Others look good apart from folate which will have improved now you’re taking B complex

Sunflower535 profile image
Sunflower535 in reply to SlowDragon

I was taking 4000/5000 per day but have reduced on the advice of Seaside Susie a wee while back when I got the results first. So it probably has dropped a bit now. I am seriously thinking of getting the medichecks bloods done - the only thing is that their folate doesn't always work through the finger prick test one. Thanks again for your advice and reassurance that all my other bloods are okay. GP never mentioned folate being low. Why does that not surprise me.

SlowDragon profile image
SlowDragonAdministrator in reply to Sunflower535

GP never mentioned folate being low. Why does that not surprise me.

If results are within range…..GP will say it’s fine

If B12 was 192 (191-663) they would say it’s fine

NHS only tests and treats vitamin deficiencies

Sunflower535 profile image
Sunflower535 in reply to SlowDragon

From February 2023

Serum B12 - 522 (191-663)

Serum Folate 8 (3.9 - 26.8)

Serum Iron - 20 (13-30)

Serum Ferritin 184 (13-300)

Serum Transferrin 1.8 (1.8 - 3.8)

Transferrin Saturation Index - 44 (20 - 45)

Regenallotment profile image
Regenallotment

gluten gives me a real nut cracking headache and I feel hungover for days.

20+ years ago (long before diagnosis) I was at a wedding and they started the disco lights during the meal and somehow this one flicky lazer blue light seemed to bore into my eye sockets so much so I had to leave early I had a splitting headache, got really sweaty and felt awful the following day.

Hope it clears for you 🌱

Sunflower535 profile image
Sunflower535 in reply to Regenallotment

I really do think the stuffing had something to do with it - as you say - you felt like you were hung over for days - I felt like that - just really awful and so tired. I slept a good part of the next day - I could see though it if I had been drinking but the only drink I had was a glass of shleur and some diluting juice at the meal. Thanks for your reply. Just having the folk on here has helped me so much - before I joined I felt like I was losing my mind - that it WAS all in my head and that maybe I should be taking antidepressants like the doctor said. I will get there in the end with all your help.

Regenallotment profile image
Regenallotment in reply to Sunflower535

Yes it’s validating to read similar experiences. Glad it helped 🤗

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