Hi everyone, I cannot tell you how relieved I am to have found this forum as I have felt like I have been loosing my mind. I had my baby 10 months ago and was diagnosed with a low thyroid about six weeks ago (the reason I called the doctors is because I kept on getting pins and needles in arms at night then my head)
I was put on 50mcg of levothyroxine and felt great for about 2 weeks and since then have felt progressively worse, a dull one sided headache for about a week and now I have searing pain at the back of my head which hurts even to touch, have also been getting daily bouts of pins and needles all over my body as well as feeling very wobbly. Yesterday and today I finally cracked and had two anxiety attacks (which I haven’t had for years) thankfully though they have led me to finding here! If anyone has any advice or has had similar experiences I would be so grateful to hear from you!
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MaxSolway
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You're probably under-medicated. 50 mcg is only a starter dose and should be increased to 75 mcg when you retest at six weeks. When are you due your retest? If the GP hasn't said, get onto him/her immediately and as for one.
Thank you for responding I’m due to re-test on Monday, so hopefully will be prescribed a higher dose then, I can’t believe how painful this head burning is!
Are they just testing thyroid? Because the pins and needles suggest low B12.
It's very important to get the basic nutrients tested: vit d, vit B12, folate, ferritin. Because hypos usually have a lot of nutritional deficiencies, which cause more symptoms. So, ask if they can be done, as well.
When you get the results - always ask for a print-out of your results, and don't just accept opinions like 'fine', or 'acceptable', they mean nothing. You need the actual numbers - results and ranges. Then, you can post them on here and people can help you to understand them.
I’m just about to see them and will ask for nutrient blood work - thank you so much, never even thought it could be to do with B12 deficiency. I’ve been borderline anaemic for years and years so I wonder if that’s got anything to do with it too. Will post back once results are done.
Thank you 😊 blood work on Monday so will post and let you know. Being sent for an ultrasound on neck as a lymph node on my jawline is slightly swollen, and an MRI on back (my neck and shoulders and beyond stiff) I think I might have to pay for nutrient tests as my doctor was v reluctant to test for those and didn’t see how they could be related - it seems crazy there seems to be so little they understand about hypothyroidism!
Hi. Your symptoms do sound like anaemia and if you've been borderline anaemic in the past the effects of childbirth may have made it worse so I agree with others that you should ask for it to be checked. Also, low stomach acid which is common in hypothyroidism also means the nutrients in food are often not absorbed efficiently which makes matters worse. I hope you feel better soon as coping with a baby is exhausting enough without worrisome symptoms.
I think I might have to pay for private testing as my doctor seems pretty reluctant to run anymore nutrient deficiency tests on me. My last one six weeks ago said my iron was low, so I can only presume that that is definitely part of the problem, I will get a good iron supplement online and hope that it starts to improve my energy levels.
Thank you 😊 I booked my blood work for midday so will change that now ! I’m not sure what brand I’m on (that’s terrible isn’t it!) will post back once I’ve looked at the packaging.
Sorry you are feeling so bad. It must be difficult when also looking after a baby. This is a lovely supportive forum which has very knowledgeable people who will guide you through this.It will seem like information overload at first but keep reading and taking the advice …….. it’s worked for me 😀
So sorry to hear, I realised after 10 years that most thyroid treatments cause terrible migraines headaches, found erfa a nature throid medication last year by accident that helps my migraines , still have them but not as bad
I’ve never had a migraine in my life so having them daily has really been quite a nasty shock! I will have a look for erfa and see if it makes a difference, thank you 😊
It is much more complex, there can be many other solutions but levothyroxine and leothyroxine are hopeless in my case, other nature throids did not work as well in my case. Hope you find solutions, not pleasant having regular migraines
This is exactly where I was at several years ago. Do not fear! It is possible to feel human again. For me, I needed to improve my D3 and iron levels but the biggest difference was switching to a t3/t4 combo. About 24 hours after my first tablet I started to improve. It may not be the same for everyone but the threads here will give you lots of things to try and advice about how to get them from your gp. Chin up! You are in the right place 😊
I didn’t even know that you could combine the pills you were taking, this really is a whole new world! My doctor just said take this pill and you’ll feel better, never any mention of all the side effects and how one size doesn’t fit all. It’s so relieving to hear that it can and will get better! Thank you 😊
I would get it checked out with your GP first just to be sure but it may be the make that you are taking. I am only happy on Mercury Pharma, any other make gives me 24/7 headaches, especially Teva. Ask for a different one it could make all the difference
I’m on the Mercury Pharma, I think it might be that the dose is too low as I’ve only just started, but my goodness I’ve never felt so out of sorts in my life!
First thing is, do you have any actual blood test results from BEFORE starting on levothyroxine
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Thank you so much for all of this information, it really is so helpful, I’m so grateful! I’ve just checked and I’m on Mercury Pharma. I saw my doctor yesterday and he basically said they wouldn’t test for nutrient deficiencies as he doesn’t think that’s what is causing my troubles (though I am starting to think more and more that it is!) He is sending me for a ultrasound sound of my neck and an mri of my back as I have a swollen lymph node along my jaw line, from what I read this could be because of antibodies though…I will ask for printed copies of my previous blood results and the next round on Monday and post on here. Thank you again, I am so relieved to have found this forum!
Mercury Pharma brand makes 25mcg, 50mcg and 100mcg tablets
Eltroxin is also identical
Both are often listed as Advanz (company name) on pharmacy database
Low vitamin levels are extremely common with hypothyroidism due to low stomach acid leading to poor nutrient absorption(regardless of how good your diet is)
Many GP’s are unaware of gut and thyroid connection
Test vitamin levels at least once a year, more frequently if levels are low and working on improving
Will definitely sort out a private vitamin level test as I’m sure this could be on or the problems. I have non corosive gastritis too, so I’m pretty sure my digestive system is quick sluggish because of this.
Do you have any recommendations for private nutrient testing? Do home kits suffice? Also, any suggestions for where to find a decent endocrinologist would be most appreciated!
I got my results text to me this evening and apparently I have hashimoto’s but they didn’t specify anything else.
I will ask my doctor for a follow up and a print out of the actual test results as they gave me no further information. They also said that my thyroid levels are back to normal so they’ll keep me on 50mcg, which doesn’t feel right as I still feel awful!
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.
I did my test at midday as they had no early ones, and I’d taken my last dose I would say around 28 hours earlier.
I haven’t got the printed results yet but am picking them up next week, I will post on here once I have them.
I am afraid I have no idea what level I was at when then first tested me or now, so I’m keen to have a proper look at them and try and make sense of it all!
I am 60kg and quite petite, I used to be 50kg, but have put on weight since having my baby, and I guess it’s been harder to shift because of my thyroid issues.
I am afraid I have no idea what level I was at when then first tested me or now,
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine….always book early appointment, ideally before 9am and last dose levothyroxine 24 hours before test
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum….especially with Hashimoto’s
NHS guidelines are clear GP should test vitamin levels and do coeliac blood test (if you’re not already on strictly gluten free diet)
Guidelines on dose levothyroxine by your weight suggests you will perhaps eventually be on around 96mcg per day
60 x 1.6 = 96
96 x 7 = 672 per week
So you might need 100mcg 6 days a week and 75mcg once a week
But some people need a bit more ….some a bit less
50mcg is only a starter dose. Push for next increase to 75mcg per day. (Even if you initially only take 62.5mcg per day for first 6 weeks)
Have requested an appointment with my doctor to up my dose. From looking on other posts here I see it is quite common to feel worse once starting the medication if you’re not at the right dose, so hoping it will help.
My original blood results on the 6th of June were TSH level - 17.80 and T4 Level - 8.2
This weeks test results were TSH level - 2.68 and T4 level - 13.3, so much more within a normal range but I still feel awful! My antibody test was 464 IU/ML ! My doctors don’t seem to test for T3 so I think I will have to find a private endocrinologist
Then after 8 weeks on 75mcg levothyroxine, considering getting Medichecks or Blue horizon test that includes testing folate, ferritin and B12 (and vitamin D)
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Hi Maxsoloway , I'm sure I'm reacting very severe to Levothyroxine 75mg . What the he'll is this medicine ? Severe body aches, bad heart, severe ear aches and headaches, foggy head , more like dementia. Swollen stomach. Diareer . Will be getting of this . Hope u get it sorted , get of it to.
Hi Maxsolway, yes I'm on levothyroxine. And I also thought I'm going crazy for years . I thought is thos Thyroid or levo. I've been get severe headaches, severe stomach aches , hives, swollen throat. List goes on and on. Now I keep jumping on and off it . As I'm sick of it , in throes , of thinking how am I going to get off this . Whether it , brand I'm react to or levo itself. And if brand , will be nightmare to get another. But hey need try with Chemists. I hope your doing OK and. Ur problems have gone.
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