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Hypothyroid and chronic headaches - link?

(49 Posts)
jasperc163 Wed 15-May-13 18:13:22

Anyone experienced a link between these 2 conditions? GP and Neurologist saying my borderline hypothyroid test results not relevant but there seem to be a number of articles on the web stating that even borderline thyroid problems can cause headache to become chronic or non responsive to treatment. I have had a headache that never goes for 2.5 months now.


Lamazeroo Wed 15-May-13 18:14:17

My Hashimotos was diagnosed thanks to chronic headaches.

Lamazeroo Wed 15-May-13 18:15:54

Also, what do you mean by borderline? Optimal TSH levels are between 0.4 and 1.9. I wouldn't rule out thyroid dysfunction causing your headaches until you've got your TSH down to below 2.

jasperc163 Wed 15-May-13 18:26:40

Thanks both :-)
Ok I mean borderline according to the NHS which is def not optimal!
I had a test 2 weeks ago and T4 was 12.7 (bottom of range was 12) so it is low. TSH was 4.26 and top of range was 4.2.
I had TSH 2 yrs ago and it was 2.99 (range up to 5).

I have had another test taken today at different place (as first one was done at my request privately by neurologist and today's via gp) and this one will also cover antibodies. However I am not hopeful esp if antibodies negative as I know range at this hospital is at least 5 for TSH). Results next week.

The problem I have is I am seeing a neurologist (private via work insurance) who thinks this isn't relevant and just wants me to take preventatives - I tried the first one and am currently refusing the 2nd). GP says no one will treat thyroid at these levels and doesn't agree that there are optimum levels or that this is the cause. I would like to be able to see someone helpful but on work insurance which means a referral I think :-(

I am clutching at straws as I have a constant headache now for 2.5 months, previously more hormonally related and occasional (but always been headache prone). Trying to hold a f/t job down with 2 young kids and this and I am close to breaking point.
However also have fatige (though who wouldn't with job and kids), bad circulation in feet that turn blue very easily!, tingles and loss of feeling in fingers occasionally, not majorly overweight but can't shift the excess I do have, anxiety, stress, occasional depression, dry skin and scaley patches......

jasperc163 Wed 15-May-13 18:27:14

oops Lamazeroo didn't see it was you on both posts sorry :-)

Lamazeroo Wed 15-May-13 18:33:25

Well of course you have fatigue with a TSH of 4.6! It's important to remember that if you do test positive for antibodies that your sptoms are 'magnified', to put it one way. In other words, hypothyroid symptoms in autoimmune patients are more severe at a lower TSH than non- autoimmune patients.
If you have a look on Thyroid UK's website (I think it's them I'm thinking of) there's a list of doctors who are open to treating so-called subclinical hypothyroidism.

jasperc163 Wed 15-May-13 18:40:10

Lamazeroo - were you fully hypothyroid when you got diagnosed or subclinical? How long did it take the headaches to settle?

I have list thankyou - I was just hoping not to have to go down that route if I can help it (most of these doctors are integrative or whatever the term is and I don't think covered by insurance).

GP acts like 4.26 is absolutely nothing - I am new to this so hard to know how hard to dig my heels in.

thanks again

stirrupleathers Wed 15-May-13 18:46:16

Hi im sorry to hear you have been feeling so poorly. Our Gp's are so poorly equipped to deal with us thyroid sufferers, i feel like banging my head against my Dr's tabled when i go to see him as they are just working on the guidelines and not listening to how we are feeling. I was literally crying when i went just after Christmas as i was suffering from headaches, fatigue etc and im on 100mg of Thyroxin. I have just been called back so hopefully he will increase my dose after my recent bloods taken. My levels are T4 15.7 TSH 4.7 so not far off your levels and i was feeling awful on 1oo mg! No wonder you are feeling so ill.

There are some really informative people on here who can help.... RockinD ? Where are you?


jasperc163 Wed 15-May-13 18:50:36

Thanks Stirrupleathers. As I am new to this its hard to know how much fuss to make and whether it is a total red herring and I should just give in and take the neurologist's advice (which involves ignoring any possible reasons for what has happened). Trouble is I can't stick this out much longer if I want to carry on working and actually give my children a pleasant home life!

GP clearly not interested in symptoms as she feels they are too vague and could be anything.

I could be lucky and the results come back next week worse but somehow I doubt it! That would be too easy....

thereinmadnesslies Wed 15-May-13 19:01:14

I had a constant headache for months before being diagnosed with Hashimotos. I managed to see an endocrinologist via my employer ,medical insurance, and the endocrinologist said I should be aiming to keep my TSH as close to 1 as possible. I started with a TSH of 9, at 4 I was still feeling awful and didnt really feel better until it reached 2/3

Lamazeroo Wed 15-May-13 19:18:12

On diagnosis my TSH was 5.4, T4 12, antibodies 1000+. I mostly keep it under control with a gluten free diet and naturopathic treatment. Took thyroxine for a short while when I was pregnant. The headaches are like my own personal barometer for thyroid function. As long as everything's relatively okay I don't get headaches. As soon as my TSH starts to rise above about 2.6 they return. Then I know I have to be very careful not to slip up with gluten, and to be conscientious with taking my selenium, zinc, enzymes, herbs etc.
If you can't see an integrative endo then I'd recommend a naturopath.

jasperc163 Wed 15-May-13 19:36:53

Thanks thereinmadness and Lamazeroo - this is fascinating and evidence that maybe I am not barking up the wrong tree. I guess I have to hope I have antibodies? Do most people with a thyroid problem have them?

I have been gluten and dairy free for a week and a half but no change (and I am actually worse this week as I have my period). So Lamazeroo, you have got your TSH down without Thyroxine? Do you see one of the integrative endo's on the ThyroidUK list? I am wondering if many normal endo's will treat borderline hypo at all?

EddieVeddersfoxymop Wed 15-May-13 19:40:20

I have hashimotos...and terrible headaches. Am currently feeling better than I have for a long time, but it's taken nearly a year on thyroxine to get to this point. My GP said that it can take years to fully recover. I discovered that I had been tested 2 years before diagnosis and antibodies were found then - nothing was said to me, no treatment was offered, I was given a diagnosis of CFS and told to exercise more. confused

I had been getting terrible migraines, headaches that last for days and more....and I don't doubt that the hashimotos has been involved. I'm not getting them as frequently now and do put that down to my body realising that the thyroxine is coming in daily now and sorting itself out.

Like the poster above, the headaches are almost a barometer to my thyroid function.

jasperc163 Wed 15-May-13 21:14:22

Hi Eddie, glad to hear you are getting on top of it. How high was your TSH initially?


jasperc163 Thu 16-May-13 17:59:55

up in case RockinD is around!

michtaylor Thu 16-May-13 19:50:20

My TSH was 89 when I was diagnosed. I'd been going to my GP for months telling him how poorly I felt and he just kept telling me it was a virus. Eventually, my husband came with me and the GP agreed to do some blood tests, Thyroid function was one of them. The same day as the blood test, GP rang me in a panic asking me to go straight to surgery as he needed to see me urgently. During the first year of treatment, he tried to keep my dose of levo at 100/125, this did not make me feel well. I told him I was upping it to 150 and since then he's left it up to me. I just go for 6 monthly blood tests and ring for the results. I find that I feel best when my TSH is 0.05 or thereabouts. Any higher and the leg pains and brain fog start again.
I recently went to him complaining of stomach pains. He didn't mess about this time, he sent me straight to hospital for a camera down my throat. It now turns out that I have Barrets as well.

The only reason I've had the confidence to take control of my own thyroid health is because of

lemonandice Fri 17-May-13 02:31:24

I am suspected of having Hashimotos- got my bloods back this morning. My first TSH test was 6.3, and a month later it was 16.3. The second test included an antibody check which was close to 3000. As I understand it, a normal value is <35.

I've had a variety of symptoms that swap and change every day, but severe headaches are definitely one of them! I know they can wear me down in a day, I don't know how you are managing.

I would advise trying to see a different GP though. Mine has been very sympathetic and told me that even at a TSH of 6.3 she'd treat me if my levels were still high at the next test in two months (was feeling so bad I had to go back before that) and if my symptoms were still there. To quote her, "some people seem to be more sensitive to it than others.) The more I read on the net the more thankful I am I got a good one that tested me straight off the bat!

Have you called/emailed the British Thyroid Foundation? They've been amazing for me, sending leaflets and telling me what my results mean.

kickassangel Fri 17-May-13 02:43:02

I was borderline hypothyroid in the UK, moved to the US and became within the range to be grated. Sadly, I didn't know that, and it wasn't until I was really seriously ill that I got tested again.

Anyway,ALL those symptoms sound familiar. I also have very low vit D, and I can feel its when my levels drop. I take several thousand units a day in winter, then cut back in summer.

Headaches that never go have also been helped by a c-pap. Thyroid glands often expend, I can feel the lump from mine in my throat, so it was causing sleep apnea even once the thyroid level was right.

Swap doctors and keep pushing, thyroid problems seem to be ignored unless you are seriously ill, rather than trying to prevent things getting worse.

It has taken just over a year for me to feel Ok since the first set of blood tests, and my gp is fairly certain that I will always feel run down in winter (I need a break in the sun each Feb, or so I tell dh). I am looking forward to this summer as the first time in a decade when I will have the energy to really enjoy myself.

You are not crazy or moaning for no good reason, keep asking for help til this is sorted out. Underlying health issues can be hard to diagnose, but that doesn't mean that your doctor shouldn't try.

jasperc163 Fri 17-May-13 09:39:44

Thanks both. I think the problem I have is that my TSH needs to be a bit higher - 4.26 just a but too close to the range (and inside many). Not sure any endo is going to see me (on insurance) with this (unless my 2nd blood test comes back with antibodies next week).
Has anyone seen anything mainstream that the GP will acknowledge that states that the optimal level is <2 and that above that people can be ill?

EddieVeddersfoxymop Fri 17-May-13 12:23:04

Hi, my TSH was 11 when I was finally tested by my's just under 2 now. Ironically I have a stonking headache today sad

thereinmadnesslies Fri 17-May-13 20:00:01

Does anyone know why they can't just remove the thyroid if you have Hashimotos? I'm getting so fed up. My levels are ok for a bit then go crazy and its so frustrating. My GP has the attitude that I should be on 125mcg thyroxine for the rest of my life, problem solved.

RockinD Fri 17-May-13 21:09:05

Ooops! Late for the party again.

jasper The BMA endorsed book called Understanding Thyroid Disorders by Dr Toft is available in many chemist shops. Because it is BMA endorsed, it is difficult for GPs to argue with it and Dr Toft is one of the top endocrinologists in the country, which is even better. I don't agree with everything in it, but he does, helpfully, use a narrower range for TSH than most labs.

I think it's still less than a fiver and worth lashing out for a copy.

madness Non-essential surgery - on the NHS?

thereinmadnesslies Fri 17-May-13 21:14:37

RockinD - I would pay, I'm that fed up.

lovessummer Fri 17-May-13 21:31:02

jasper- was interested to read your post, but sorry to hear you are suffering such headaches. I can relate to a lot of what you said as I have been suffering head pain/aches for the past few months along with lightheadedness and dizzyness. It's not all day every day though, but its been really tough holding down work, balancing the demands of the children etc, so I really feel for you and can totally understand your frustration. I have been lucky in a way that my symptoms have been taken very seriously and I have had no end of brain scans etc etc. But on reading your thread, I have now started wondering if perhaps my issues are thyroid related as I have an auto immune deficiency syndrome discovered after the removal of a benign tumour a while ago. I get tested fairly regularly but so far tests have always come back as functioning fine. My last result had a TSH of 4.0 which is obviously still within normal range, but now I am wondering if perhaps it could be starting to pack in? Presuming you've been given brain scans as part of your investigations?

jasperc163 Sat 18-May-13 14:01:50

Thanks for the book recommendations RockinD - I will look into it.

Lovessummer - yes I have had an MRI a while back which didn't really show anything - they did it quite quickly as my mother had headaches and then a brain haemorrhage in her 40's (probably not related to the normal headaches she had) . No blood tests were done (apart from those that I requested recently) just a diagnosis of based on history of episodic headaches that were getting more frequent, and then just never went away.
Headaches do not to be top of mind as far as a thyroid diagnosis goes, rightly or wrongly I don't know. However anecdotally there seems to be a lot of evidence to support the fact that it could be the problem. I am clinging to this desperately as the, so far, only logical explanation.

I hope you get some resolution too...

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