In 2021 January had my thyroid removed, reason graves disease. My problem is since January had few different endocrinologist whom did with me what they wanted. They never listened to me (my symptoms,how I feel etc) after my surgery, My starting dosage was 150mg then after 4 weeks reduced to 100 after another 3 weeks reduced to 75 from monday to friday and 100 on weekends ( stupid but they told me this is a correct dose for my body). Since end of March I started feeling tired,sleepy, heart palpitations,dizzy,shortness of breath, muscles crumbs joints pain, vomiting, blurred vision etc went to gp they send me home with paracetamol and some medicines for joint pain, few weeks after landed in A&E with shortness of breath tingling,muscles crumbs,pins and needles palpitations etc. (blood test shows b12,vit d ,iron, folate,calcium all low, started taking all prescribed meds.(know nothing about any improvements only have been informed by gp all in normal range.End of May my serum tsh was 2.98 I was dying for higher dosage of levothyroxine was increased to 100 after 4 weeks tsh 2.51 increased again to 125 mg and still feel unwell im tired, feel like a zombie,my energy level is-0 after work I can only do is take a shower and sleep. Anxiety, numbness in my hands and feet,headache,after meal feel weird, strange feeling in my body,tingling in my hands and feet tight throat (swollen throat and neck feeling) can feel like my skin is to small for my body etc. If anyone can help me I will be very grateful 🙏 I have 5 years old son,he doesn't understand why mummy isn't so active like she was last year. This is very hard for me too because I don't feel like myself I was very active person just to work for 12h every single day, has time for everything,was happy and very optimistic person since now. Everyone ignores me gp sending me to the endocrinologist,and endo sending back to gp, feel like a tennis ball. Here is my last results made after 6 weeks being on dose 125
Ths-0.1 (normal value 0.27-4.2 )
ft3 4.6 (NV- 3.9-6.8)
ft4 16 (NV-11-26)
done conversion calculations
Ft4- 33.33%
Ft4-24,14%
endocrinologist want to put me on 100mg levo again. Feel scared to changing dose again because I feel sick all of the time when im jumping from dose to dose. Every month Im on different levo brand which makes me sick, spoke to my gp and endo about it answer was this is all levothyroxine medicines and doesn't matter which brand you are talking, personally I think it does matter. ( I would like to apologise for my writing, however English is not my first language,hope everything what I wrote is nice and clear to understand. Thanks for any respond and any advise.
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Tipto
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Your FT4 should be in for third of range & FT3 in top half.
Key nurtrients must be optimal for levo to work well. GPs are satisfied if in range you need them optimal.
Folate, ferritin, vitamin D and B12. Ask GP to test.
Good conversion of levo (T4) to FT3 has to be good. Your FT4 is not high enough at 33%.
Your GP is dosing by TSH. You were hyper with Graves so being hyper for any reason, especially if for a prolonged time, down regulates the TSH. The technical term being hypothalamus–pituitary–thyroid (HPT) axis.
This means the TSH is not only becomes slower to respond but can stay disproportionately low when in a healthily feedback function it would rise.
I had mildly elevated levels from a nodule for over 4 years. I’ve been euthyroid for nearly 3 years now with taking carbimazole but the TSH I’ve never risen into range.
When you test, do you test early in morning after fasting except water? This give highest TSH & lowest FT4. Doctor often think this is not relevant and don’t advise about this. Supplements containing high levels of Biotin (B7) can skew test results. Check labels & avoid 1 week before draw.
You GP & pharmacist should be aware fillers in certain brands can cause upset. You should be supported in finding and sticking to a brand which suit you.
Every month Im on different levo brand which makes me sick, spoke to my gp and endo about it answer was this is all levothyroxine medicines and doesn't matter which brand you are talking, personally I think it does matter.
To some people it does matter. Yes, they all contain Levothyroxine Sodium, but they also contain fillers and these fillers can differ between brands.
Do you know which brand you felt best on? That may be difficult because you've never actually felt well, but if you can think of which brand was maybe least problematic and you may have felt better on then ask your pharmacy to only give you that brand in future. Always check your tablets before leaving the counter. If it's not the brand you want then hand them back and ask for your prescription back then ring round and find a pharmacy that can dispense the brand you want. You cannot hand tablets back once you've left the pharmacy so it's important to check at the counter.
done conversion calculations
Ft4- 33.33%
Ft4-24,14%
Little bit of a typo there , it's actually:
FT4: 33.33%
FT3: 24.14%
These are very low in range. The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
Unfortunately, doctors are taught to be guided by TSH (which is not a thyroid hormone, it's a pituitary hormone) and they fail to take into account the actual thyroid hormones which are FT4 and FT3.
It's not easy to get a doctor to increase dose when TSH is so low, there is nothing in the NICE guidelines for treatment of hypothyroidism that tells doctors to look at the FT4 and FT3 levels. The only evidence we have is from Dr Toft, past president of the British Thyroid Association and leading endocrinologist, who states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor and hopefully that may help.
It's not fair on you to continually change your dose after 3 or 4 weeks. It takes 6-8 weeks for levels to settle and get a proper measure of your levels on the new dose.
Please obtain results and reference ranges for
Vit D
B12
Folate
Ferritin
from before being prescribed medication for low levels and any new levels if you've been tested more recently. Post them on the forum and tell us what you have been prescribed.
Yes you are CORRECT, many, many people find different brands of levothyroxine are not the same
Government had to step in with clear guidelines on this as many medics and pharmacies continue to deny this
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
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.
As SeasideSusie says …..always check the bag before leaving the counter in pharmacies
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
It’s Very important to regularly retest vitamin D, folate, ferritin and B12 and maintain all these at optimal levels
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
It is imperative that you are dosed and monitored on your T3 and T4 blood test results and not your TSH - which in primary care maybe the only blood tests result being understood.
T4 - Levothyroxine is a pro hormone and needs to be converted by your body into T3 the active hormone that the body runs on. T3 is said to be about 4 times more powerful then T4 with the average person needing to convert and utilise around 50 T3 daily, just to function.
Your own ability to convert the T4 into T3 can be compromised by low vitamins and minerals especially ferritin, folate, B12 and vitamin D so you may need to supplement these as they may well be in the NHS ranges but not high enough for someone who has Graves Disease who has had a thyroidectomy.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2. and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 only, some people find at some point in time that T4 seems not to work as well as it once did and need a little T3 added to their T4 prescription, some people can't tolerate T4 t all and need to take T3 only, and some people find hat they need to take Natural Desiccated thyroid to restore their wellbeing when managing their hypothyroidism.
Your results showing your T3 and T4 in range is one thing, but quite where these numbers in the ranges need to be to relieve your symptoms is another matter - and most people feel at their best when the T4 is on the top quadrant at around 75%+ as this in theory should convert to a higher level of T3:
Hyperthyroidism and hypothyroidism are the two extreme ends of the T3 range :
Too high a level of T3 for you and you may experience hyper type symptoms just as too low a level of T3 for you and you will likely experience the equally disabling symptoms of hypothyroidism.
If you go into the Thyroid UK website, who are the charity who support this forum you will find a list of symptoms of both hyper and hypo symptoms and it does become a bit confusing as some symptoms can be experienced when dealing with either extreme of T3 levels.
I found the Elaine Moore Graves Disease Foundation website an excellent adjunct to this forum and the Thyroid UK website having purchased Elaine's first book in 2015 when I became very unwell but considered a conundrum by my doctor.
Your Thyroid and How To Keep It Healthy is another book that has been instrumental in my repairing my own health and written by a doctor who has hypothyroidism. Barrry Durrant - Peatfield writes in a easy to understand, common sense manner as he wrote this book for patients living with thyroid issues, especially hypothyroidism, not doctors.
I too have Graves and was treated with RAI thyroid ablation in 2005 and I now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicate with full spectrum thyroid hormone replacement and am much improved.
Graves is a poorly understood and badly treated auto immune disease and it will be in your best interests to read up a bit and become your own best advocate, as we all have done, when we find ourselves in a struggle with some medical mainstream guidelines.
Generally speaking, it's better to stay under endocrinology as at least they are better placed to run the T3 and T4 and some enlightened endos will run the ferritin, folate, B12 and vitamin D as they understand how vital these core strength vitamins and minerals need to be kept at optimal levels.
Looking back, knowing what I do now, I found the knowledge and understanding of Graves Disease nowhere, in the medical mainstream and then after the RAI thyroid ablation the lack of understanding of Graves and RAI treatment with the ensuing primary hypothyroidism even more detrimental to my overall health and well being.
I didn't know any different and looking back spent 4 years too long believing my doctor knew best until I was housebound and thinking what and why has happened to me ?
Thyroid UK also hold a list of patient to patient recommended endocrinologists, doctors and specialists, and if you can't get anywhere through the NHS system this might be an option to consider.
Hi Tipto I can sympathise with you and all you’re going through.I had my thyroid taken out in March 2020 and all the symptoms you are experiencing I am too
I’ve seen an endocrinologist - that was a waste of time my GP can do nothing more than give me levothyroxine, I have done private blood tests and levels all within range private blood test to check vitamins all are reasonable to good I am despairing too but I have an appointment next week with a doctor who has thyroid issues themselves and I am hoping that I can get other medication to sort out all the problems that I have
Hi, that's way I'm fighting for my son to become feeling as a human, I'm a strong person and never give up, always fighting to the end. We have to be strong. I'm so grateful for this forum and very kindly and helpful people who know more than doctors,and I have a light in tunnel to know what should I do.😉
MHRA/CHM advice: Levothyroxine: new prescribing advice for patients who experience symptoms on switching between different levothyroxine products (May 2021) .
A small proportion of patients treated with levothyroxine report symptoms, often consistent with thyroid dysfunction, when switching between different tablet formulations of levothyroxine. Healthcare professionals are advised that if a patient reports symptoms after changing to a different tablet of levothyroxine, a thyroid function test should be considered; if a patient is persistently symptomatic, whether they are biochemically euthyroid or have evidence of abnormal thyroid function, consistently prescribing a specific levothyroxine tablet known to be well tolerated by the patient should be considered. If symptoms or poor control of thyroid function persist despite adhering to a specific tablet, consider prescribing levothyroxine in an oral solution formulation.
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, it's actually:
Thyroid help please
Very confused - should I change treatment or continue trying different Levothyroxine doses 
Are these symptons real or just in my head?
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