HI everyone needing help so for 30 years I have been having my thyroid checked at my doctors. Knowing something wasn’t right. But every time with no further action
In jan 2020 I felt I had something stuck in my throat so went to doctor and they said it’s fine nothing to worry about ( they only looked in my mouth). Then pandemic hit I rang in the July as felt it was getting worse. Still on the phone it’s fine On New Year’s Eve 2020/2021 I was putting makeup on as not been doing that but thought aw I should when I saw a lump on my neck was the size off a tennis ball when I swallowed. So now am annoyed jan 3 2021 I rang the doctors got an appointment that day another doctor too a look said she was gunna refer me For a scan by March still not heard anything so rang to see what was happening it hadn’t even been sent By April I got a scan said I needed a biopsy ASAP another 6 weeks having to ring agin see what was what went for the biopsy the man that was there to do it said. Aw am just gunna re scan I was like no am here for a biopsy am not leaving with out it’s taken 18 months to get to this point. By now am so so annoyed. Then another 4 weeks pass having to ring again. They want another biopsy ok ok let’s go back then another 4 weeks by now it’s nearly July i then have to beg for my results. Which by now you guessed it cancer 4inch by 3inch Ok we still can deal with it no problem full thyroid out both sides I say as not worrying about it coming back. At this point I think brilliant problems over. 10 aug opp 4 th nov radiation. Then u will see the endocrinologist 2 months after. 12 months later I get a phone call To say the worst part is the medication the side affects after all this no one wants to help I keep trying to get the right medication as I feel so terrible is a understatement. Side affects
Weight gain 2 stone
Hair loss
Cold hands and feet
Sick
Over heating. All the time
Acid reflux
No sleep
Woozy feeling
Dizzy
Constipation
Itchy
Mood sad
Jaw clenched
Leg pain
Can’t breathe when walking
No energy.
i think I have hashimotoes and no one will test me I now have high blood pressure this I only know as my friend took it It’s always been low I think I need t3 no one is helping me What do I do xxx
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Loud22
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Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
First thing is, do you have any actual blood test results?
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.
HI thank you am in Uk 51 yes female I was on 175 the 175 sat sun 150 mon to fri then 150 mon fir 125 sat sun now 125 mon fri 150 sat sun am always over active they never tell me bloody results i ask but just say am over they only test TSH I take magnesium b12 zinc at the mo but that’s only because I read something not cos they tell me anything I have had north star accord and alums but if I am right they are all same company Teva Xxx
Thank you I have been to the doctor today to get a print off of my bloods but to my surprise they don’t have any So rang Jimmy’s left a message to see if they have it still waiting for them to get back to me so what brand is best to get as getting low
Different brands of levothyroxine suit different people
Try to stick on one brand at a time
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)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 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
beware 25mcg Northstar is Teva
Wockhardt only make 25mcg tablets
Some people only tolerate Wockhardt….so get dose as a number of Wockhardt tablets per day
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
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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
i think I have hashimotoes and no one will test me
There's no point in testing you for Hashi's, because you don't have a thyroid anymore. Hashi's attacks the thyroid, but if you have nothing to attack, it goes away, even if you had it before your op. So, that's nothing to worry about.
What you do need to worry about is the quality of the care you're being given, and at the moment it's pretty poor. Just testing TSH is totally inadequate - especially as you don't even have a thyroid, now. A TSH test cannot tell you if you're over-medicated, you need the FT3 to know that. And, by the sound of your symptoms, you are very under-medicated. High blood pressure can be a hypo symptom, as can weight-gain, hair-loss, and all the rest of your symptoms.
Acid reflux is probably due to low stomach acid, caused by low T3. Has your doctor given you PPIs to 'treat' this? If so, it is the wrong treatment. But, first you need to find out if you have high or low stomach acid - something doctors never bother to do!
Very few doctors will ever tell you your blood test results - they prefer you don't know that that you can't argue or ask awkward questions they can't answer! But, in the UK, it is your legal right to have a print-out of your results - with the ranges - so, just ask at reception. And, if they haven't tested the FT3, refuse all future reductions in dose.
I am so sorry you have been through this. What appalling treatment!! Are you no longer under the care of the Endocrinologist?
A friend of mine had to have her thyroid removed for thyroid cancer too. She was told her TSH must be kept suppressed by her specialist and her replacement dose was 200mcg of levothyroxine. Am appalled your dose has been dropped so low. Its clear your GP is very ignorant!! Your symptoms are those typical of under treatment!! Generslly speaking GPs know very little about the effective treatment of hypothyroidism, even less I would imagine with thyroid cancer.
The lack of thyroid hormones is what is making you so ill. Thyroid hormones drive the whole of the body......the lower thr dose they prescribe the slower the body runs, below a certain level your body cant function properly as its running too slow so it does weird things to compensate like raising your blood pressure to try to get the nutrients around your body. Breathlessness, no energy and constipation are all consequences of the body tunning too slowly. Weight gain is because you end up bloated again because your body cant process things like toxins so it tries to cope with fluid retention. Your body is effectively being put into a hybernation state by under medicating you. Under treating will also affect the uptake of nutrients, blurred vision even hearing can be affected. All because your body needs thyroid hormones in every cell to function correctly.
If you look on thyroid uk website you can see where you can get home testing kits to check you thyroid levels. (Ft 4 & Ft3).
They also have a list of recommended books to read. Knowkedge is power. I realised quite a few years ago that the only way I was going to get better was to become knowledgeable on my condition as so many doctors havent a clue.
Sorry about how you got here - but now here - you will be helped and ultimately feel better .
A fully functioning working thyroid would have been supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a storage hormone, a prohormone and needs to be converted by your body into T3 the active that runs your body and said to be around 4 x more powerful than T4.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and also inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing can all impact T4 to T3 conversion.
The thyroid is a major, vital gland and the coordinator of all your body parts, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
So, first and foremost we need to see a full thyroid blood test to include TSH, T3. T4. and inflammation and the ferritin, folate, B12 and vitamin D results and ranges.
This is your first step back to better health and once we see these results and ranges forum members will talk you through what it all means and your next best step back to better health.
It's where we all start and if your doctor is unable to help you with this blood test, like the vast majority of us, you ill need to use one of the companies listed on the Thyroid UK website - thyroiduk.org
Thyroid UK is the charity who supports this forum and within the website you will find all things ' thyroid ' and somewhere a list of both hyper and hypo symptoms and you might be interested to read this and get a better understanding of where you are and over the future months be able to tick off symptoms as your health starts to improve - once we have some facts to work from.
thank you I have been to the doctor today to get a print off of my bloods but to my surprise they don’t have any So rang Jimmy’s left a message to see if they have it
that said they didn’t have access to Leeds bloods only there own ? So have rung left a message at Jimmy’s in Leeds I said how could u give me drugs when u don’t have my blood work. This is what I have been up against all way through it’s so hard when u feel so shit xx
Ok then - Hashimoto's is a thyroid auto immune disease and since your thyroid has been removed this disease is contained within the thyroid gland and of no consequence now.
I don't know who Jimmy is but let's hope he has you blood test results and ranges.
aw sorry its the Leeds cancer hospital it st james but it called Jimmy’s. I have read that the hashimotos just focuses on some where else when your thyroid is gone
No I don't think so - but Graves Disease is non specific but you generally only get diagnosed when the eyes or more usually the thyroid becomes involved as the thyroid is such a major vital gland and Graves is said to be life threatening if not medicated
Hey there again - these results are very limited and there are no ranges -
All we can see is that your TSH remained pretty much constant and your T4 dropped from 30.9 to 22.3 - over a 7 month period - NO ranges and more especially - NO T3 reading:
You likely need to get a fully thyroid panel run yourself as detailed previously as we need to see a TSH, T3, T4 antibodies, inflammation, and ferritin, folate, B12 and vitamin D to help you further and it's where we all need to start if wanting considered opinion.
Thyroid UK the charity who supports this forum thyroiduk.org has a page of private companies who can run the blood test for you - then start a new question with the results and ranges and you will be talked through what it all means and what you can do to help yourself back to better health and well being.
I know - we all know - and why we are on here and helping other people back to better health.
I guess if you wait long enough the NHS will pick you up but it's best to get on top of things as soon as you realise it's not just you and there are options and can take some control back yourself and the first step is the full Thyroid blood panel as previously detailed.
Once with the results and ranges start a new posy and you will be talked through everything and given advice as to your next best steps back to better health.
It's where we all start and support from other forum members is a given.
P.S. If I were you I'd go for the full thyroid panel, it's just one venous blood draw and then we have the fullest picture of your thyroid status and 10/11 results - just remember to arrange an early morning blood test - fast overnight just taking in water and take your T4 AFTER the blood draw - and stop any supplements for the week previously so we can see exactly what your body is holding onto.
If you arrange the appointment for a Monday/Tuesday you'll likely have the results back by the weekend.
I thought the bloods weren’t good enough when I have asked questions about my bloods they look at me like No we don’t have that it’s a joke. I will get the tests done thank u for your help xxxx
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