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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.

Thanks

jasperc163 Sat 22-Jun-13 19:47:23

thank you I will look into the Vitb12 though I am taking a high level vit B complex supp so i need to see what that has.

Can I just ask how impt it is to have the other antibody test? Why do NHS only do the first one?

RockinD Sat 22-Jun-13 18:26:29

Thyroxine is less efficient if iron, vitamin B12 and folate and vitamin D are less than optimal.

Your B12 is OK, but many people treat 500 as a minimum. That’s pretty much the start of the range in Japan where Alzheimers is a rarity. Makes you think, doesn’t it? I’ll pop a link on the bottom to a good B12 supplement.

Your folate’s OK and you’re working on the vitamin D.

I take your point about your mother – it was just a thought.

Normally you’d be advised to start with one ferrous fumarate and give it a week or so before raising to two, and so on. No GI issues is good though. I hope it stays that way for you.

www.amazon.co.uk/Jarrow-Formulas-Methyl-B-12-Lozenges/dp/B002FJW3ZY/ref=sr_1_2?ie=UTF8&qid=1371921937&sr=8-2&keywords=b12+methylcobalamin

jasperc163 Sat 22-Jun-13 18:01:08

Yes totally agree - however i have only seen her once and on the basis of the tests she did she said i needed to get iron up before treating thyroid. I understand that thyroxine could make me worse if take it when iron deficient? Hence where we are now (my first visit was 2 weeks ago). My problem is just that i am desperate and cant wait because my headache is so debiliating and of course i dont even know if thyroid is the cause!

My B12 was tested by endo and looks ok? 492 (range 180-912) but not D2 (I am taking 1000 whatever it is per day anyway). Also serum folate 18.2 ng/ml (range <3.0)

My feeling is my mother will have no idea if she is autoimmune and my hunch is it wont have been tested. She lost a vast amount of weight (loss of appetite) and was tested and immediately diagnosed hypo and the thyroxine worked (she is on 150mg), so i doubt a GP would have looked. This only happened 2-3yrs ago at age of 70+ though of course she could have been borderline for a long while (a whole host of other health issues that would mask symptoms and her awareness of a problem).

I am taking ferrous fumarate (or was til last night - 7 days @ 3x day). I am giving myself a day off to see if i wake up in a better state tomorrow and then will maybe try 1 and then 2 tablets. It seems a bit of a coincidence that I had vertigo and serious headache within 24hrs of each other and a few days of starting the iron - I havent had vertigo for months. No gastro complaints though.

RockinD Sat 22-Jun-13 17:36:45

Everyone says how caring she is. That's good, but in my view it's no substitute for getting better!

Ooh, a family history - that might help. Does your mother have antibodies? Is she auto immune? Does she know?

I'm probably not the best person to ask about iron. I have spent 4 years trying various tactics to raise my iron levels, without any help in the end from the NHS. I got stuck between two consultants, one who said I needed infusions and the other who said I did not. The one who would have given the infusions was the one who said I didn't need them! However, I have to say that improving my iron levels and optimising my vitamin D and B12 have done more to improve the way I feel than anything else.

What iron supplement are you taking?

jasperc163 Sat 22-Jun-13 15:17:03

sorry the antibody result above should say 16 (range 0-60)

jasperc163 Sat 22-Jun-13 15:12:05

Hi RockinD,
Yes that is exactly what she said re FT3 and Hyper - I will have to go back armed with a strong argument in 2 weeks i think as I was caught unawares (have others tried unsuccessfully to convince her?). I had emailed her before re my case and that I was not getting anywhere with GP and neurologist and she said it was worth seeing her - wouldnt say i am that uncomplicated though - but maybe she thought it would be . I do question some of the things that she says but on the other hand she appears to care and is willing to prescribe on symptoms. I do wish those on the thyroid boards had mentioned about the FT3 thing in advance though.

One of the problems she has is that my antibody test (done by GP) came up negative which she says makes it more difficult to justify treament with a borderline tsh.
Thyroid peroxidase antibody level (XaDvU) L6 iulmL [0 - 60]
I assume this is TPO? GP never did the other one.
My mother is hypo though and on thyroxine.

I have checked Ft3 range and it is actually 4.0 (3.9-6.2).

I am feeling terrible and headaches appear to be getting worse on the iron (from day 6 onwards when i also suffered a 3hr vertigo attack). I am wondering if, despite my low iron serum and %saturation, I could have been taking to much ? Any thoughts re this?

once again, thanks so much

RockinD Sat 22-Jun-13 12:47:43

That FT3 result is just in range. Just. In a fit and healthy person it would be between 5 and 6. It doesn't look like a lot, but this is probably not a linear scale and it's also quite a narrow range.

This particular doctor has been highly recommended across the internet, wherever thyroidians gather. I have no personal experience because she told me it would not be worth my while spending the money to go and see her and I know she has told others that as well. She clearly doesn't want to see 'complicated' cases and it looks as if people who are already on treatment but just need tweaking are her target audience.

I guessed the identity from the lack of interest in T3. That is a recurring motif. Her take on all this is that T3 is not important unless you're hypER. The standard line in the online thyroidian community is that T3 is vital, because only when you have a FT3 result do you know what the body is doing with the T4 it has at its disposal.

Next question (forgive me if this is further up the thread) have you had your TPO and TgAB antibodies tested?

jasperc163 Fri 21-Jun-13 20:27:12

Really does it as it is still in range? I am desperate to know what to do..
I can of course plead with endo to retest FT3 (as its on insurance anyway but she seems led by TSH, although willing to treat symptoms not just numbers).
Yes it is Dr SB - both thryo boards I am on recommended her. Would you mind PM'ing me if any experiences/thoughts?
Appreciate your help thanks

RockinD Fri 21-Jun-13 19:15:36

That FT3 result confirms that you are hypo. Thank you. It is very very relevant. It means you do not have enough active thyroid hormone to function properly.

Is this Dr SB by any chance?

jasperc163 Fri 21-Jun-13 13:52:42

Hi rockinD
This is what i fear. Endo says she will prescribe thyroxine if needs be (and assuming my TSH doesnt drop again) but wants to get iron up first as apparently treating thyroid when low iron can mean it doesnt work and you feel worse and also she has to be seen to be doing things in the right order (given that my antibodies was negative)
I have only had on FT3 test via GP a month or so ago and it was 4.0 (range 3.9 -6) however endo doesnt seem to think it is relevant! I am seeing her as was told on thyro boards that she was sympathetic and would treat symptoms but her view of FT3 is a little odd.

Nothing is helping this headache (have just resorted to migraine tablet - maxalt) and still feel crap. Can't go on like this!

RockinD Fri 21-Jun-13 13:38:18

Raising iron is a long, slow job if there are underlying thyroid problems inhibiting absorption.

You're clearly hypo on the results you've posted, but we need to find a way to prove it.

Did the endo test FT3?

jasperc163 Fri 21-Jun-13 11:04:06

PS thyroid antibodies test taken a while ago was negative - 16 (range 0-60). Could the iron problem be causing it all instead?

jasperc163 Fri 21-Jun-13 10:56:48

Me again and no better :-( I would appreciate some advice form those of you with thyroid and/or iron deficiency knowledge?

I saw a endocrinologist a few weeks ago who did a load more blood tests. Iron results from GP surgery (ie haemoglobin and haemocrit were ok and so I was told that was fine). Endo tested for ferretin, iron serum and transferrin saturation. Ferretin in range but low end (35) whilst iron serum and transferrin way below range. So I am taking iron tablets 3x day to try to correct this but I am a week in and feel no better at all.

FT4 came back same as always (12.6) and TSH higher 5.26 but against a wider range (0.4-6) so yet again i am still in range. I see a trend but I am told that no TSH results from different labs can be compared as the only thing that matters is their relationship to the range.Is this really true? If so how do medical bodies publish recommendations re upper limits eg the recommendation that the limit is 2.5-3 in the USA.

I am so confused, wondering if either of these problems are likely to be the cause of this crippling headache (now 3.5 months long) and how long i can hold out against taking topiramate.

I gather that treating with thyroxine is not a good idea anyway when you have low iron as it inhibits FT4 to FT3 conversion? Also read that if you have a thyroid problem (do I?) then it is harder for you to get iron levels up! Catch 22?

Any thoughts/advice much appreciated as I am getting so desperate.
thanks

RawCoconutMacaroon Wed 22-May-13 22:24:02

Sorry to hear that. I was lucky that the majority of mine disappeared fairly fast on the grain free diet and then other triggers were much more obvious.

I have one more suggestion- all the other triggers I have, are foods that have quite a high level of tyramine (a natural thing that is in aged foods like cheeses, cured meats, olives (loads of things), and it takes a certain amount to trigger a migraine ( could be a lot, or a tiny amount depending on the person), so I would be fine having 30g of cheese, but if I had cured meat in the same meal, and some olives, it would be too much for me and I would get a migraine- it took me a couple of months to work out what it was-,I'd never heard of tyramine despite having migraines and headaches for many years!

jasperc163 Wed 22-May-13 21:23:38

Hi RCM, i cant find any pattern but its hard when they are constant! Before this year the obvious triggers were hormones and alcohol! Not had a drink in months now...
I am pretty much off painkillers and sadly this has made no difference either :-( I have the occasional Maxalt and the occasional high dose of aspirin.
At a loss....!

RawCoconutMacaroon Wed 22-May-13 13:29:47

sad, I am wondering if you have other headache triggers - I have to watch the amount of aged/moulded cheese I eat, and egg yolk too- small amounts are fine but too much will trigger a migraine.

Also - painkillers can cause chronic headaches if taken often, so it can become a vicious circle, with the pain killers making things worse.

jasperc163 Wed 22-May-13 08:10:15

thats interesting singing silver, thanks. And I assume that wouldn't show up on an mri?

raw coconut, im 2 weeks in and feeling crap still so not too hopeful but will keep going but longer as so scared of it getting worse! glad you found a solution

My endo says that headaches with hypothyroid may be related to fluid retention increasing pressure within the brain. They should get better when your treatment is correct.

RawCoconutMacaroon Mon 20-May-13 20:05:47

Well, I felt bloody awful for a few days (this is called "carb flu" apparently), when I first changed to paleo eating... And then the fog cleared, symptoms started to go. Certainly within a week they were going.

jasperc163 Mon 20-May-13 17:22:41

Thanks RCM - as a matter of interest, how quickly did you see a difference in your headaches? I have been wondering about the blood sugar - not had proper fasting tests in the last 2 yrs (they were done previously to investigate heart palpitations). I may mention it to the GP if the antibodies come back negative.

RawCoconutMacaroon Mon 20-May-13 16:21:56

I'm not sure gluten free would chang the levels that fast.

Certainly my headaches and migraines disappeared from chronic, daily headaches with frequent migraine to almost never since I stopped eating grains ( btw "gluten free" is not enough for some people, it needs to be grain free (no wheat, barely, oats, maize/corn, rice, nothing, so gluten free breads and cakes may cause the same symptoms).

Chronic headache can also indicate blood sugar abnormalities - have you had a blood test for that too? Thyroid issues are common in syndrome X (you might call that a collection of metabolic problems, all of which are more common in people who are at risk of developing diabetes).

This is my second post- the Internet swallowed my much longer one a few mins ago!

Useful blogs - wheat belly blog, paleo solution blog, marksdailyapple.

jasperc163 Mon 20-May-13 15:05:24

Hi RawCoconut - do you mean that the wheat is causing my headache? or that I may have inadvertently got my TSH down (which I didn't want to do for this test)? or both? I am currently gluten and dairy free but its hard as I am vegetarian too!

RawCoconutMacaroon Mon 20-May-13 14:53:46

It's the wheat! The gluten and the other grains! [mad staring eyes emoticon]!

Seriously - anything even remotely autoimmune, anything connected to insulin production... Try, just for a couple of months to go completely ant TOTALLY grain free (All grains but especially gluten containing ones, and don't replace them with "gluten free" versions).

You may be amazed at the results, but if it doesn't work for you, you have lost nothing by giving it a try.

You may want to google "wheat belly" and autoimmune, thyroid, Hashimoto, diabetes, joint pain, fatigue and also "paleo" and autoimmune, etc, and have a wee read.

jasperc163 Mon 20-May-13 14:33:00

arrggh results came back and wondering if I have screwed things up by being gluten free at the time? TSH at NHS lab is 3.61 (range 0.3 to 5.6) compared to private lab 4.26 (range 0.3 - 4.2). I am waiting on antibodies results but not hopeful now of being able to argue the case for a referral. How on earth can the ranges be so different for a start?

FT4 was 12.7 (range 7.8 - 14.4). Surely this FT4 range is extremely low?? FT4 range at private lab was 12 upwards (mine was 12.6)

Very confused.

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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