I write here in despair,My Endo is a cock ,yes 'He',no empathy,doesn't listen,thinks because i research and find answers and talk within a Community I know better
One thing I tell him ,I know my own body and yes I do know my symptoms better than him ,Cock again I mutter under my breath .
Basically on 25mg Levo,Told I need to be on 50 ,tried numerous times to increase to 50 ,side effects too dramatic,yet i decrease to 25 I feel a whole lot better again .
Struggling recently with terrible head aches ,especially in temple region,is this a viral infection ? or Hypo related ,I have just had my bloods done awaiting results as not had them done for 12 months ,My last numbers were June 2017
Serum TSH Level - 11
Serum Free T4 Level - 9.7
Folate 6.9
B12 - 311
Ferritin - 155
Any comments appreciated
Written by
rushel
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All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Thanks Slow Dragon ,I've had my bloods taken this morning and didnt take levo ,my results will take 2-3 days but i feel so lousy ,head aches are a concern as i don't normally suffer these yet I've been on 25mg for 18 months
As you have been hypothyroid for long time you may need to increase even smaller steps. 25mcg alternate days with 50mcg. Waiting 6-8 weeks before increasing to 50mcg. Then retest bloods after further 6-8 weeks
Most patients eventually need somewhere between 100mcg and 200mcg. But has to be increased slowly over many months
Vitamins must be optimal too
If you have Hashimoto's then gluten intolerance is very common. You do not need any gut symptoms
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription. Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Thanks for all the above ,I am on levo wrockwarton,twice I have tried going to 50mg as per the request from Gp and also Endo,on both occassions I felt very poorly,aches,pains in feet,general unwell feeling,hence self medicating back to 25mg ,I am 44 years Old .As mentioned I have had bloods done this morning and no doubt they will tell me to increase levo,I have been on the prescribed Vit D for over 12 months now,don't know what the levels were initially .
I showed the ranges on my B12 and Folate to my local Chemist only 30 mins ago and even though they said were in range they are very low,Alarmed my Gp has not picked up on these and mentioned previously
Until my results I don't know whether he has screened for these
Can you list definitively please what I should request to be tested
Ask for thyroid antibodies to be test to see if you have autoimmune thyroid disease (Hashimoto's)
Both TPO and TG antibodies need testing
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Medics often dismiss antibodies as there is no specific medical treatment. But lots can be improved with vitamins and diet
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten and or dairy . So it's important to get TPO and TG thyroid antibodies tested at least once .
Your GP will say folate and B12 are within range. But on Levothyroxine majority of patients need these at much better levels. You will need to self supplement a good quality daily vitamin B complex
You should ask GP to retest vitamin D to check its now above 75nmol
You need to get on to higher dose of Levothyroxine. Many people have to increase very slowly. Yes it often makes you feel worse before you feel better
That s great,I'll get these tested ,I remember my endo saying I had high hormone levels but never mentioned any thing other than Levo etc...
I've not seen him for 12 months as he simply doesn't listen to me,I will keep you posted on results,looking at my count's does this add up to my symptoms as I don't have a lot of symptoms like feeling cold,dry skin,hoarse voice ,but I am very tired,fed up,head aches,feeling breathless etc
We don't get all the symptoms. Everyone gets a different set. I am never cold. I'm always too hot. You are definitely hypothyroid with a TSH level of 11. You must raise your dose. I too struggled badly at first to raise my dose but it can be done. You just have to recognise that you will feel a bit crap while you do it.
If you have a pill cutter (or get one from the chemist) you can cut your tablets in half and take 1 25mcg and one 12.5mcg tablets every day and hold that for a good few weeks. Put up with the symptoms that will rise. I have badly pins and needled feet and swollen feet, I felt anxious and stressed and very low in mood. But it wears off. Then, after a week or so feeling a bit better you can go up to 50mcg a day. And when you next need a dose increase, do the same again. Be sure to book your review blood test 6 weeks after you reach the full dose, so discount the weeks on 37.5mcg and start counting from when you increase to 50mcg a day.
Wow that sounds amazing advice I will give it a go,those results were from last June and I'm awaiting after today's bloods results in a few days I guess they will be even worse than the ones I've submitted here
Kinda stressing now having gone to docs today and having blood tests these head aches have just suddenly come on and won’t go away , paracetamol, naproxen , nothing eases it , although I do sleep ok , so the pain doesn’t effect me that way
Try and relax a bit Russ, in case the headaches are stress related. We all get very stressed when we have unresolved thyroid issues. If you know how to meditate, then try that. But it could just be that you really need a dose increase.
I get that but I wasn’t stressed before the head aches started , I’m kinda hoping they are thyroid related etc as I went to the doctors with the head aches and feeling lousey hoping to ask for bloods to be done as I know they’ve not been screened for 6 months then I was told I should be on 25 even my Endo said I’d get worse on just 25mg
I had terrible headaches when I was overly hypothyroid - all different kinds - cluster migraine, stress, sinus, dehydration, perfume induced...it was awful. I never get them now I am optimised on medication.
Wow but these have suddenly come on then again I was at 10 tsh then went to 12-6 so maybe that was the tipping point I’ve only been on 75mg for 3 weeks so was hoping it would be taking a toll now on feeling better and head aches going but hey they simply not subsiding yet yes I get full temple aches , top, facial,ear , shooting pains, in sinus’s too , panics me and panics that they want me at doctors to see a head ache specialist 😪😦
It takes about 6 weeks to build up to full strength in the body so results can be a bit sluggish. Once the TSH goes down to below 1 you ought to feel a whole lot better. It can be a slow war of attrition I’m afraid. It took 9 months to get my meds in range, but you should get there quicker than that. Try not to panic about the headaches they are symptoms of being overtly hypothyroid and should ebb away over time.
Well my head aches are still here very bad either side of temple , eye sockets and pain running to my ears , been on 75mg now for 3 weeks now was hoping it was going to feel the benefits soon , doc referred me to a head ache specialist 🤔 so down and feel awful, every evening come home and go to bed
Dosing up on paracetamol to try to take the edge off head aches tsh 12.6 last count and I hear I have to get it down to 0.2 to 2-00 ideally , is this how you felt ?
I'm sorry you are still struggling with the headaches.
I didn't suffer headaches, I had/have different symptoms. Mainly total physical exhaustion when I need to raise my dose, which I need to do now. I am very exhausted at the slightest thing right now.
Wow, I am so pleased to hear what I'm going through is normal, I have just been increased to 75mg and I'm also feeling hot, anxious, almost nauseous at times, I had no idea why I am feeling like this and it's only been since the increase, I asked my doctor and she said there should be no side effects from the levothyroxine? Have been feeling rough for the past 4 weeks so hope it settles down very soon, am due for another blood test and hoping to God I don't have to increase it again.
Well my head aches are still here very bad either side of temple , eye sockets and pain running to my ears , been on 75mg now for 3 weeks now was hoping it was going to feel the benefits soon , doc referred me to a head ache specialist 🤔 so down and feel awful, every evening come home and go to bed
Dosing up on paracetamol to try to take the edge off head aches tsh 12.6 last count and I hear I have to get it down to 0.2 to 2-00 ideally , is this how you felt ?
Actually it gets a bit easier as you do increase. If you think about it, a starter dose of 25mcg increased by 25mcg is a doubling of the dose. I'm about to go up to 125mcg and hoping I can do it more easily this time.
It's not the levothyroxine itself that causes the issues in many cases, it's how it interacts with our other hormones. Particularly cortisol and sex hormones. If they are not right, we can't increase easily without issue.
It’s probably just the shock to your system of getting more thyroxine. You’ll need quite a bit more eventually to feel better again. Hang on in there 🤪😉😎
Hi There, so results back ,but have to await more bloods as they said insufficient sample received to carry out T4 although TSH came back at 11.6 , Vit D total 70.8 advised via letter to increase to 50 mg , which I had already done and so been on for 3 weeks , still feel lousey , rotten head aches , all over not one specific region,waters tested too and ok as occasionally burning wee , so I went back and he knew I had been taking 50 but now advised taking 75 mg , I’m only just getting used to the 50 so I will gradually work up to 75 , I will get my T4 and Vit b 12 results tomorrow
Does this all sound familiar I’m so fed up
Just when I think after taking naproxen my headaches go they creep back
Blood pressure was 131/84 I can send a screen shot of my results if needed as they tested a lot including serum levels , full blood count red blood cells etc etc
You are very under medicated. Going to have to be patient and increase dose slowly
Retesting 6-8 weeks after getting to 75mcg Levothyroxine
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Vitamin D may be better around 100nmol.
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you increase supplement 2-3 months and retest. It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
Ok so I have them TSH 11.7 , Serum Free T4. 12.6 , B12 and folate 350 pg/ml Vit D , 70.8 , serum folate 5.9 my/ml , ferritin 174.6 my/ml was told all ok how do I increase these b12 n Vit D without prescriptions
My head aches still lousey and feel crap , tired , flu like symptoms, had my waters checked also today
If you put results and ranges on new post several vitamin experts will reply
We need the ranges to see exactly how low they are. Each lab is slightly different
Majority on here have to self supplement
Assuming you are in the UK and vitamin D result is in nmol units
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 1000iu for 2-3 months and retest. Aiming for around 100nmol
It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
If you mean the headaches then yes, you’ll find countless others on here who suffer terrible headaches. In fact, that was what took me to my gp initially last year -little did I know I was going to have a massive “crash”as I call it from which I’m still trying to recover. The headaches were the least of my problems! Very debilitating though, I’ve never known headaches that bad or that were there every day for months.
Be assured though that they did go and once you get your levels sorted, yours will too 🙂
Well my head aches are still here very bad either side of temple , eye sockets and pain running to my ears , been on 75mg now for 3 weeks now was hoping it was going to feel the benefits soon , doc referred me to a head ache specialist 🤔 so down and feel awful, every evening come home and go to bed
Dosing up on paracetamol to try to take the edge off head aches tsh 12.6 last count and I hear I have to get it down to 0.2 to 2-00 ideally , is this how you felt ?
Eye exam perhaps advisable, too. Even mild eyestrain can cause headache.
What kind of headaches are you having? Do they come on fast or slow? Last minutes, hours, days? Any other symptoms?
I get migraines and also shorter but more severe cluster headaches, plus run-of-the-mill headaches from muscle tension, pinched nerves, caffeine deprivation, sinusitis. Sometimes a cold pack at the base of the skull helps me.
Allergies, sleep deprivation, barometric changes, dehydration, heat, fluorescent lights or bright sun are some of my triggers.
Low B vitamins or D or magnesium are a few of the factors that can cause or worsen headaches in some people. High or low BP, or sudden BP changes, too. Some auto-immune illnesses can cause them directly.
The thyroid problems may not be the only issue here.
Best of luck figuring it out. A headache tracking app helps some people.
Hi they range from niggling pains to full aches no specific place back of head , temple awaiting B12 results and T4 tomorrow , Vit d is 70 within range but token could and should upping on 50mg Levo from 25 past 3 weeks but advised I should go to 75 as I was told 12 months ago to increase to 50 but tried and made feel bad so bit the bullet increased now to 50 , waters tested too as occasionally recently burning wee my TSH currently 11.6
If you turn out to have a urinary tract infection, that may be worsening headaches, too. Fingers crossed you figure it out soon!
It can be miserable trying to figure some of this out.
Another thought: if your neck had troubles, that wouldn't help. (The head bone's connected to the neck bone! ) If it does, maybe an osteopath or physiotherapist could help.
Well my head aches are still here very bad either side of temple , eye sockets and pain running to my ears , been on 75mg now for 3 weeks now was hoping it was going to feel the benefits soon , doc referred me to a head ache specialist 🤔 so down and feel awful, every evening come home and go to bed
Had eyes tested prescribed reading glasses
Dosing up on paracetamol to try to take the edge off head aches tsh 12.6 last count and I hear I have to get it down to 0.2 to 2-00 ideally , is this how you felt ?
Hello, I don’t know about all the technical stuff, hopefully someone will reply to help there. But, you didn’t put vitamin D results up. I suffer with migraines and have found that if my vitD level is below 80 then they get more intense. So might be worth a check for you.
No one medical has helped me with anything really helpful on headaches/migraines. I get severe reactions to different meds. I cannot take folic acid, paracetamol or the generic sumatriptan (that’s 7 hours of violent vomiting and a GP wanted to give me anti sickness tablets and another medication to cover it! 🤬).
I was the one who linked the low vitamin D to the intensity of the migraines. They’re not gone, but it has made a huge difference. 🙂
Completely agree re vit D and changing thyroxine levels for migraines, but may be worth checking out histamine intolerance. The list of foods on there are also pretty accurate re what triggers migraines for me. X
It’s mainly fatigue (which I get easily), lack of sleep or bad sleep and being hungry which sets me off. But if I have a hint of a headache I have to avoid certain foods. Although since I’ve started on a bit of T3 I find I can eat some things which I would usually avoid. Nothing is easy if you suffer with migraines as what set you off one day might not the next time 🤷♀️
Have you ever tried methyl folate, or folinic acid? Some people have MTHFR or similar metabolic defects that impair metabolism of the folic acid form of that vitamin.
I do great on methyl folate, had reversal of some neuropathy when we finally found that problem.
Also, this article about migraine helped me a lot. (No connection to this site, except for liking the relatively readable articles with up to date information and really good peer-reviewed sources.) lifeextension.com/Protocols...
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) If it does, maybe an osteopath or physiotherapist could help.
Thyroid levels haywire 
Help understanding what's happening, lab results 
TSH and T4 levels
levothyroxine liquid
