I posted on here a few months ago when I received a diagnosis of Hashimotos based on blood test results and was waiting for an ultrasound.I've since requested a print out of those results and have also had the scan. I've been taking 50mg of levothyroxine daily.h
The radiologist told me I there was a large swelling on my thyroid, I wish I'd asked to see the photos now,because I've received a text message from my Dr that the scan "suggests"and underactive thyroid and she will arrange a telephone consultation with me when I've hada blood test in a couple of weeks (she wants to test me after I've been on the medication for 2 months)
The blood test results are hard to decipher but I think this is it:
Se thyroid peroxidase Ab conc-> 1006 u/ml< 9.00u/ml
HbA1c 38( <48.00mmol/mol)
Serum TSHlevel 4.81( 0.27-4.20mU/L)
Serum free T4 level 12.8 (11.00-25.00pmol/L)
From what I can gather I am not showing as underactive from these blood test results, but I am showing most symptoms.I can barely move today I am so exhausted, I sleep easily 10+ hours a night and still wake up tired. I could barely open my eyes this morning. I feel so fed up not knowing what is causing this, being told I have antibodies but I'm not underactive but feeling awful all the time. I ache all over,all of the time.
If anyone has any suggestion on interpreting this I would be very grateful.
Many thanks
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Holiday74
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Oh yes you most certainly are showing hypo! Stupid doctors don't know how to interpret blood test results. You are technically hypo when your TSH goes over 3. And your TSH is quite high enough for you to have symptoms.
Not that it's the TSH that causes the symptoms, you understand, it's the thyroid hormone T3, which they don't even bother to test! But a TSH that high is an indication of low thyroid hormones.
The other thyroid hormone, T4, looks low, but can't really tell because you haven't given the range. Please, always give ranges when giving results because they vary from lab to lab and we need the ranges that went with your results.
Your high antibodies mean that you have Autoimmune Thyroiditis, commonly calles Hashi's. So, things are going to get worse, not better. Hashi's slowly destroys the thyroid when your immune system attacks it, mistaking it for the enemy.
As to the scan, the large swelling is not 'on' your thyroid, it is your thyroid.Hashi's makes the thyroid swell. I wasn't aware that an ultrasound could pick up hypothyroidism, but it will show the damage done by the disease. Which, I suppose, comes to the same thing. But, I don't think asking to see the photos would have changed anything because doubtful you would have understood what you saw.
Levothyroxine is not medication in the normal sense of that word. It is not going to heal your thyroid or cure the disease. It is thyroid hormone replacement - the thyroid hormone T4. It replaces the hormone your thyroid can no-longer produce enough of to make you well. 50 mcg is just a starter dose, and usually the dose will be increase by 25 mcg after your blood test, and you should start to feel better. But it's a long, complicated journey. Nother ever happens fast with hormones.
Thank you so much, I think I have updated with the ranges now. I feel so upset this week because I feel like I've been struggling for so long, without really being heard, and then on the one hand the validation of being told there is a reason, but at the same time being told I'm not testing in the range to be symptomatic yet (so go away and stop whining). I also have been diagnosed with Coeliac disease a few years ago, and also have anaemia for which I had to have a blood transfusion because my levels were on the floor. It all just feels too much.
You have to try and understand the mindset of doctors where thyroid is concerned. They do not learn much about it in med school. So, when a patient presents with signs and symptoms of hypothyroidism, they are instantly out of their depth and want to just stick their heads in the sand, ignore it and hope it will go away. It won't, of course. Your doctor would have no idea what a symptomatic ranges is - nor what the symptoms might be. In fact, there is not range in which one is symptomatic. Some people have raging symptoms with a TSH of 2, and others no symptoms at all with a TSH of 100. We're all different, and that is another irritating complication for doctors! lol
So, just ignore her when she says things like that, she doesn't know what she's talking about. You have to learn as much as you can about your disease and advocate for yourself as best you can. It won't be long before you know a lot more about it than your doctor! At least she has started you on levo, so you just have to take if from there. Remember to always get a print-out of your blood test results every time you have a blood test, post them on here, and then we can help you to understand them.
You are ready for next 25mcg dose increase in levothyroxine
On levothyroxine TSH should always be below 2
Most people when adequately treated will have TSH around or below one
Request 25mcg dose increase in levothyroxine from GP and bloods retested in 6-8 weeks time
Many people find different brands of levothyroxine are not interchangeable
Which brand of levothyroxine are you currently taking
Ideally get same brand for 25mcg tablet
Likely to need further increase in levothyroxine after next blood test
ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
When adequately treated Ft4 will be at least 60% through range minimum….or higher
ESSENTIAL to test vitamin D, folate, ferritin and B12
Have you had these tested?
What vitamin supplements are you currently taking, if any
Approx how much do you weigh in kilo
Guidelines on eventual dose levothyroxine required is approx 1.6mcg levothyroxine, per kilo of your weight per day. Some people will need more, a few need a bit less
Dose should be increased slowly upwards in 25mcg steps until symptoms are improved and Ft3 is at least 50% through range
I'm not sure the brand of thyroxine either, it's a brown/gold box but can't seem to find any brand name other than at the bottom of the leaflet it says accord. Not sure if this is a brand though?!
Accord is a manufacturer. Their levothyroxine is supplied under their own name and also as Northstar and Almus.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
Also, can I request for these to be tested by my GP or do I need to order a test-at-home kit? Vitamin D, Selenium, etc. I still haven't ordered a kit to test for the T3, is it still worth doing this? Thank you
Your GP has been very sloppy, not only with your thyroid treatment, but also with your coeliac monitoring. Per NICE:-
"How should I manage a person with confirmed coeliac disease?
Arrange for a person with confirmed coeliac disease to be reviewed at least annually in primary care."
Assess for nutritional deficiencies and whether iron, folic acid, calcium, and/or vitamin D supplementation is needed. See the CKS topics on Anaemia - iron deficiency, Anaemia - B12 and folate deficiency, Osteoporosis - prevention of fragility fractures, Vitamin D deficiency in adults - treatment and prevention, and Vitamin D deficiency in children for more information.
Assess the person's risk of osteoporosis and need for dual-energy X-ray absorptiometry (DEXA) scan in adults.
The British Society of Gastroenterologists recommend the following annual blood tests:
"Once the disease is stable and the patients manage their diet without any problems, annual follow-ups should be initiated. The physician should check on intact small intestinal absorption
full blood count,
ferritin,
serum folate,
vitamin B12,
calcium,
alkaline phosphatase
associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),
and serum glucose),146 147
liver disease (aspartate aminotransferase/alanine aminotransferase)40 and
dietary adherence (anti-TG2 or EMA/DGP"
I think you'd be extremely lucky to get Iron infusions on the NHS...........It seems like the general policy is to let you get so ill that you end up in hospital............
"During the period April 2017 to March 2018, a total of 97 781 patients and 159 400 patients, respectively, had a primary and a secondary diagnosis of IDA, with the former accounting for 131 088 hospital admissions in England"fg.bmj.com/content/12/5/363
Almus comes in brown boxes and the name Almus will be at the bottom of the gold coloured strip which gives the dose size of the tablet, ie 50mcg. Almus tablets are made by Accord which is why the leaflet says Accord, the foil back of the blister pack should also say Accord. Accord tablets are reboxed as Almus for Boots.
As far as I'm aware, I've never had any tests for any vitamins other than iron levels. I don't currently take any vitamins, but have been trying to read stuff and I know they are important. I know there were a few replies to my last post but I've been so overwhelmed by it all I've just put my head in the sand. I keep thinking, 'oh the next Dr I speak to will have more information' but it doesn't seem to happen. I'm not very happy with this GP but willing to listen to what she says at the next telephone appointment, and if I still feel like I'm being fobbed off I will request to speak to another. I keep reading about dietary changes, I'm obviously gluten free, and I'm hugely strict about this, but, depending on what you read, soya and dairy seem huge no-no's too. I've only been on thyroid for about 5 weeks, which is why I think the GP wanted to wait. Thank you for all your help, I am compiling a list of things to ask the Dr and will be able to use these links.
it's a brown/gold box but can't seem to find any brand name other than at the bottom of the leaflet it says accord. Not sure if this is a brand though?!
Yes that’s the brand - Accord
Just to complicate matters …Accord don’t make 25mcg tablets
Request an increase in number of 50mcg tablets prescribed (rather than adding 25mcg tablets) and then cut an Accord 50mcg one in half to get 25mcg
Get weekly pill dispenser for your levothyroxine
Makes it MUCH easier to see if missed a dose ….as well as keeping the other half of 50mcg in pill dispenser for the next day
Get a pill cutter or a sharp craft scalpel
Generally everyone on levothyroxine should avoid soya
Dairy ….at this stage wait and see …you may not need to
How long since you were diagnosed as coeliac?
Dairy intolerance often improves on strictly gluten free diet
I'm obviously gluten free, and I'm hugely strict about this, but, depending on what you read, soya and dairy seem huge no-no's too.
It is unfermented soy that is an issue. Fermented soy is okay. greygoose knows a lot more about the kind of problems people can have with soy than I do.
...
And it isn't "dairy" that is the problem as such. It depends on the person. And it makes a difference whether people are "just" intolerant, or if they are allergic, and what they are intolerant or allergic to.
I think people should identify precisely what it is that they have issues with in connection with milk or cream or yoghurt or cheese, rather than eliminating a wide swathe of the foods from their diet because it makes their lives more difficult than it needs to be, and eliminates sources of protein and nutrients that can help us to stay well.
Some people feel fine with sheep milk or goat milk products but don't do well with cow milk products. Some people do poorly with lactose (i.e milk sugar) from all mammalian milks, some do badly with casein (milk protein). It might be possible for people to cope with lactose-free products.
Incidentally, eggs are not usually a problem, but for historical reasons people associate eggs with dairy and give them up too. Looking after chickens, and milking cows, sheep, and goats was considered to be "women's work" and they did their work with eggs and milk in the dairy. So eggs are now connected with dairy for that reason for ever more, even though from an allergy or intolerance point of view they are completely different to milk and should be tested for side effects separately from milk.
Personally, I gave up gluten and have gone no further. I love milk products, and I love eggs, so I'm not giving them up. I don't like most soy products so I very rarely eat soy at all. My life is hard enough as it is!
I'm honestly no-longer sure that it is just unfermented soy that is the problem. I did read somewhere that fermentation actually makes the bad bits worse! But, I can't find that information again, and cannot find any other mention of it. So, personally, I just avoid it all.
I do wonder if the whole problem is not the quantities of soy that people consume. There's an awful lot of difference between the soy products - soy protein, soy flour, et al - that is consumed in the West, and the tiny amounts of soy as a condiment that are consumed in the east. It's almost impossible to find bread without soy flour in the UK, and I do wonder what damage that is doing to the population. Could it be responsible for the rise in hypothyroidism in recent years? It wouldn't surprise me.
Well, I'm not saying it is all bad, just that I don't know anymore. The tiniest drop of soy sauce makes me ill, but that's just me. But, if you don't feel any ill effects, maybe it's OK. I just don't know anymore.
Many people find Levothyroxine brands are not interchangeable.
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
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)
If you were to eventually try lactose/dairy free diet you would need lactose free levothyroxine
Teva, Glenmark or Aristo (100mcg only) are the only lactose free 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.
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
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