Thyroid UK

Morning Headaches

Hi

I have for the past two months but more so in the last month been experiencing morning headaches, like a dull ache and feel really awful when I wake up.

My eyes have also been severely dry and Optician has put me on eye drops 4 times a day and referred me to an Opthamotologist. I also feel dizzy and lightheaded with persistent bouts of diarrea usually at least once a day also I am exhausted most of the time, especially in mornings and evenings. Could this be thyroid related? I am currently trialing T3 and trying to up my dose, my iron levels are all very low - I have posted them previously and I am on 3 iron tablets a day with a view to reviewing this and my B12 which is also low. I can repost results, but I am starting to think something is wrong with my head the way it is flaring up each morning and usually lasts until around 11ish or sometimes lunchtime.

Has anybody experienced similar?

33 Replies
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What dose of T3 do you take and how do you increase dose?

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Hi Shaws

I am currently on T4 in morning 62.5 mg (two pills and one pill halfed)

and 1.25mg of T3 - which is a quarter of a 5mg T3 pill. Endo has advised me to increase T3 to half a pill in the afternoon around 3pm. I struggled on the 5mg full pill at one time. Any idea why my previous symptoms are occurring? I am struggling to get to the bottom of it with my GP. Especially the morning headaches that seem to hang around until at least midday and the feeling dizzy/faint.

Recent results:

T4 16 ranges (9-21)

T3 1.5 ranges (0.9-2.4)

TSH 1.3 ranges (0.2-4.5)

B12 212 ranges (180-2000)

Folate 9.1ug/l (ranges 2.8-20)

Ferritin 22ug/l (ranges 15-200)

Iron 9umol/l (ranges 10-28)

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Also concerned to increase my T3 to the half pill when my iron levels are so low as I don't want to feel even more ill than I do as I am really struggling with the horrible headaches/foggy head and generally feeling weak/faint at work as it is! but need to get to the bottom of what this could be as GPs are clueless as always..

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Make an immediate appointment with your GP.

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what should I say to the GP as they aren't taking this serious at all

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See what the P.A. have to say first.

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Looking at your woeful vitamins/minerals I think that is more likely to be the reason you dont feel well at all. I will add SeasideSusie as she is the person who knows more about these.

Iron is below range, ferritin also near bottom B12 is absolutely awful and your doctor has to do a test for the intrinsic factor to ensure you don't have pernicious anaemia as B12 should be nearer 1,000 than 212. You should not supplement with any B12 until you get a proper diagnosis.

I think before considering your thyroid hormones levels (which aren't good) you have to see to your vits/minerals immediatley. I am really surprised your doctor has not taken these into consideration.

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Thank you Shaws,

You are so right, I am very surprised they haven't taken more notice of these too. It is really neglectful. I visited them on Monday and was told to take 3 iron tablets a day - I was already on 1 a day and was surprised my levels have hit rock bottom so much as they have. As for B12 - they have told me it is still in the range and not that low, which it is as it should be a lot higher like you say. I just feel they are really disgraceful the way they treat you. Meanwhile I am suffering and trying to hold a job down which is so impossible.

Should I ring back and ask to be tested for the Intrinsic factor for PA? they aren't retesting my B12 until another month after I have had my Iron tablets upped as I explained to them though this won't affect my B12 as they are not the same thing....

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We are not medically qualified but does your GP want your B12 to go below 180. For goodness sake. Both B12 and Vit D are prohormones so have essential work in our body. I left school at 15 and now seem to know more that those who are supposed to be educated and 'qualified' - in what I may ask!

Just say you have been advised that you need to have an intrinsic factor tested to exclude pernicious anaemia. You have been informed by the NHS Healthunlocked forum for help/advice.

Wait till SeasideSusie responds as she will not beat about the bush.

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Yes I agree shaws,

It's a terrible shame the NHS gps are so negligent, I suffered for years before getting a proper thyroid diagnosis and then found my Endo who has been great but I only see her every so often meantime left with negligent GPS who can't even be bothered to help you it's anything complicated or tricky. Yes I think they'd much prefer it to go below 217 then you collapsing before they'd even look to treat it, shameful!

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You can also join and ask the Pernicious Anaemia forum on this site regarding your B12.

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If you have not had your vitamin D tested recently would get that done too. Highly likely too low

Vitamindtest.org.uk £28 if GP is unhelpful

You have clear gut issues, and are already gluten free I believe.

Your vitamins are dire because of being under medicated for Thyroid. But struggling with thyroid hormones not being effective due to low hormones. Chicken and egg situation. So you need to supplement like mad to improve the vitamin levels, then thyroid hormones will be more effective

Post your results on PAS healthunlocked for advice too

Push GP to test for Pernicious Anaemia before starting loading B12 injections, especially if you have any low B12 symptoms

b12deficiency.info/signs-an...

Post about Loading doses of B12

healthunlocked.com/pasoc/po...

When getting B12 injections its recommended to supplement a good vitamin B complex too, one with folate in

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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Thank you for your reply.

I would be lost without this website! My Gps have been truly awful. I am going to ring the doctor later today and see if I can push for this PA test though I fear they will just reject it, because I have had so many issues with my thyroid they always make me feel like I am lying or a hypochondriac but I am neither and feel awful. Can I not start b12 until I get the PA test done? I am on ferrous fumarate 3 a day at the moment but don't feel much better on these yet,

I am booked to see my Gp next Wed for a follow up however I don't know if it's better to see another one meantime as she is currently on annual leave. It's useless seeing so many different doctors.

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Do you know if GPS can carry out the intrinsic test or does it have to be a consultant?

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I think GP can. Ask on PAS healthunlocked. Once you start supplementing any B vitamins testing is not really worth doing.

I just self supplement, daily Jarrow sublingual B12 (1000mcg) and good B complex. (Igennus)

GP never tested me, despite clear symptoms of low B12

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That's bad they didn't test you, I am not hopeful I'd be able to get a test either. Did you have PA? Or get b12 injections?

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No to both. I just take sublingual B12 daily. If I stop supplementing, pins and needles tend to return, especially if my T4 or T3 dose isn't spot on

Oral may be as good as injections according to this link

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

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Thanks, did you get tested for PA at all as how do you know if you have had it or not?

I am tempted to just start b12 to feel better but I don't want to skew any possible test results. It's such a long winded process I also need to start upping my t3 be scared too Incase i feel even worse while the dose adjusts? Shall I lay off upping the t3 at the moment?

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Personally I think vitamins need to be optimal first.

Push GP to test vitamin D and intrinsic factor

If they won't test B12 then just self supplement. B vitamins are water soluble so apparently we just pee out excess.

Important to test vitamin D before supplementing and retest twice yearly. It's toxic in excess and oil based.

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Mistygrey

Sorry this is a late reply in response to Shaws' tag, I haven't read all the replies so apologies if I'm repeating information already given.

B12 212 ranges (180-2000)

I agree with other members about having intrinsic factor antibodies tested, if you have Pernicious Anaemia you will need B12 injections and many do with your level. This really needs to be checked before self supplementing with sublingual methylcobalamin. Check for signs and symptoms of B12 deficiency here b12deficiency.info/signs-an... and, of course, mention any to your doctor.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

Folate 9.1ug/l (ranges 2.8-20)

This isn't too bad, folate should be at least half way through range so you are nearly there.

**

Ferritin 22ug/l (ranges 15-200) Iron 9umol/l (ranges 10-28)

Did you have a full blood count and was iron deficiency anaemia confirmed? The usual treatment for that is 3 x ferrous fumarate daily. Personally, as your ferritin is so low, along with below range iron, I would be asking for an iron infusion then once your level is up you can maintain it with a lower dose of iron tablets or maybe even by diet.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

I see Vit D testing has been mentioned, and I agree. Get this done and come back with the result for a suggestion for supplementing if necessary (it most likely will be).

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Hi Susie

Thanks for your message. I am going to try and go back to my doctor tomorrow as it's unlikely I will get an appointment today unless it's an emergency.

You mentioned the iron infusion, what does this involve and how do I get this? I am currently on 3 ferrous fumarate a day at the moment but feeling no better really. I haven't started supplementing b12 as I wanted to try and get the PA test done first. Yes the Gp did a full blood count apparently this was normal but I didn't get the result they just told me it was normal, I can try and get this result for you. I will also order the vitamin d test to retest.

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Iron infusion is done intravenously and your GP should arrange it or refer you to hospital for it.

If you can open the PDF, go to the bottom of this page and click on to the link for bjrm.co.uk/ShowPDF.aspx?ind... (that is not the full URL, I can't copy a URL for the PDF but you can click on it, scroll down and click on the link for intravenous iron therapy and this is a UK article about iron infusion or do it through Google here:

google.co.uk/search?source=...

Otherwise, this is a US article medicalnewstoday.com/articl...

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Thank you Susie for your help and advice 🙂 I doubt I would get an Infusion of iron as they are so reluctant to do anything or give me anything except ferrous fumarate but I can ask about this when I see my Doctor again tomorrow if I get an appointment!

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This is the one I made a copy of Susie :)

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Oh I forgot to say they told me I wasn't aneamic but iron deficient and he didn't seem too interested in my very low b12 results 🤔

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Iron deficiency anemia refers to a drop in the number of red blood cells and/or the amount of hemoglobin within the RBCs, and that is the end-stage of iron deficiency. So you can have iron deficiency but not have full blown iron deficiency anaemia. Iron is quite complicated, there's so much involved and what I know is just the tip of the iceberg I'm afraid.

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I will get my full blood count results as soon as I can and post them.

I think they did mention my full blood count looked ok and size of red blood cells. The lowest result I had was both iron, ferritin and b12 as results show above. I wonder what levels you'd need to have to even get considered for an iron infusion

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I don't know what the level is where you would be given an infusion, but below range really ought to be a trigger. I can understand being low in range just being prescribed tablets, but iron infusions should be available to patients who are unable to absorb iron tablets.

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Hello Mistygrey

I am on T3 prescribed by an excellent endo who told me they might cause headaches. My guess is that is the cause, but, headaches that are with you on waking and improve through the day can indicate something very serious indeed, so please will you get a very competent GP to check you?

I noticed that you take your iron three times a day. I am on iron as well and the endo told me I must leave 4 hours between taking iron and the T3, I can't imagine you are managing to do that or you'll be awake for more than 24 hours! The iron will prevent the T3 from working for you, just changing that might help. (I take my last dose of T3 4 hours before bedtime and take the iron at bedtime - endo also told me body can only take up a much smaller amount than is often prescribed and too much can make us ill so I don't take as much as prescribed).

Please, would you let me know how you go?

Best of luck in your journey back to good health

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Hi again :)

That's good advice thank you, I have been taking iron at lunch and at bedtime well away from my thyroid doses.

Also the headaches have gone for now thankfully I am thinking the cause is hormones due to other symptoms I have been experiencing lately, I am awaiting blood results from the Gp last week to test for anything else that might be the cause. But glad they have gone for now, since I have been on iron higher dose within the last week the headaches have gone so maybe all along it was critically low iron causing me to be so ill?

Yet the gps still told me to my face that my Iron all be it on the low level was ok? Disgraceful I don't trust any of them now. I only trust my Endo who has been brilliant in giving me T3 and my general care!

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Same here mistygrey, advice from my GP was not good but the Endo is brilliant in giving me T3 an general advice. We are very lucky, if only everyone had this. :)

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We are lucky! It so hard to find a good Endo I have seen two including the good one I see now, she's saved my life! As dramatic as that sounds! 😊

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Likewise! The first endo I saw wanted to increase my dose further, thankfully my GP said no but by the time I saw the second endo my TSH was over 95 (in a range of -0.5 - 5) which the endo said was coma level! So like you, I think he really did save my life.

It's good to 'talk' with you :)

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