I hope you're all having a good Christmas and doing well 🌲. This is going to be a very long post, sorry! Have crazy blood results - I hope someone can help me, fingers crossed! Here we go.....I had Graves Disease about 22 years ago - eventually had radio treatment, started on Levothyroxine, slowly increased dose, been on 125mcg for the last few years.
Started having seizures around 5 years ago, don't know why? I've been on low doses of epilepsy tabs for the last 6 months, not had a single seizure for the first 6 months of the year, while Not taking tablets. Had a few seizures over last few months and feeling utterly exhausted and weak.
I had gallbladder problems this summer - in hospital and had antibiotic treatment and op, I didn't have gallbladder removed though.
Are these all linked, a brain or pituitary tumour or something? I just don't know, but I feel terrible.
I hope someone has some idea and can help me? Thank you all.
I'm sorry I've made a real mess of this haven't I, posting on other members forums etc etc. I hope you can understand, and bother, to read my most recent, November, results. I've tried to place them in a better format. Thank you and sorry again.
TSH *18.11 mU/L 0.35 - 4.94
T4 14.3 pmol/L 8.0 - 19.1
Creatinine *125 umol/L 45 - 84
eGFR (MDRD aligned) *38 ml/min/1.73m2 60 - 140
Calcium 2.30 mmol/L 2. 20 - 2 .60
C-Reactive Protein *10 mg/L 0 - 4
Ferritin 86 . 7 ug/l 10.0 - 250.00
Total Vitamin D. 135 nmol/L
Full Blood Count: PLT 404
WBC 11.9
Neut 7.6
Baso 0.11
Mono 0.9
That's all I've got unfortunately, there aren't any T4 results on my test. I had no idea about all this advice that you great people hand out on here. I've probably even take my thyroxine not long before a blood test too in the past. And supplements. Unbelievable. I don't know if anyone can help point me in the right direction but I've been feeling utterly exhausted and terrible for a few years now..... I don't feel like me anymore.
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Luckystay
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Welcome to the forum, just to reassure you none of us are medically trained so we come at this purely from lived experience and critical thinking (not following flow charts on computer screen). 😉
Can you use the edit function (click on ‘more’ at the bottom of your post) andput the ranges next to your results. Labs can use different ranges and this is a very important part of the picture.
So you had Graves, given RIA and made hypo. Five years ago started having seizures and they treat the symptoms this year?
Why did they hold off so long? And —->
‘I've been on low doses of epilepsy tabs for the last 6 months, not had a single seizure for the first 6 months of the year, while Not taking tablets.
Had a few seizures over last few months and feeling utterly exhausted and weak.
So you had no seizures start of the year
Then you are placed on mild epilepsy tablets then start having seizures again.
Are any doctors following this up???
You need a full thyroid panel before anyone can make an informed opinion. (And of course ranges on your current test (what date, time taken and was it fasting and had you taken your thyroid medication.)
What epilepsy medication are you taking and when
and is there anything else like supplements. Don’t hold back you would be amazed how stuff can interact.
As you know TSH is a pituitary hormone but without seeing thyroid hormone levels we can’t know what is going on and if you are adequately medicated.
Interesting about the gallbladder 🤔. There is someone else who has recently had their gallbladder removed this summer I believe.
I’m not the font on this, I’m not sure if any one person will be but hopefully with some support and some more information from you we can help you ask the right questions and get them (the doctors) investigate further.
Thank you for your reply - that's a lot of information! It might take me a while to reply, lots of details to look up! I didn't want to take Epilepsy tablets because I didn't believe I had Epilepsy?! Why would I suddenly start with it at the age of 55 out of nowhere? Always thought the cause might be a tumour of some sort - had no proper scans etc because we moved City, then literally COVID lockdowns started so didn't get to see Endocrinologist or Doctors for a very long time. I was on a dose of Levothyroxine of 125 mcg for years. Recently (Dec) raised slightly to 125 every other day, 150 the other. Thanks again 👍
No worries Lucky, take your time and get ducks in a row but do get back. There are very knowledgeable people on this forum. I’m an admin (relatively new) but there are some incredible forum members with vast knowledge who can help. I have tagged in another admin who will be along with information hopefully at some point. I was a recipient of this info and slowly worked through it. I am well thanks to this forum (and a supportive hubby) 🤗♥️
Always thought the cause might be a tumour of some sort - had no proper scans etc because we moved City, then literally COVID lockdowns started so didn't get to see Endocrinologist or Doctors for a very long time.
I think the first thing you need to do is point out to your GP or any other doctor you see in connection with epilepsy that you have been diagnosed and treated for the condition but have never had any MRI or CT scans to see if a cause can be identified. If it is a tumour then you need to know so it can be treated appropriately. I'm not a doctor nor do I know anything about epilepsy, but I think it can cause brain damage if left untreated, so refusing to take the tablets you've been prescribed might not be a good idea. But then I don't know why you don't want to take them.
I think you would need a referral to a neurologist. I would suggest doing plenty of research into possible doctors you could be referred to in hospitals in your local area before talking to someone who could refer, and seeing if you can see someone of your choice. Unfortunately in the NHS this is often not taken into account. However you could say "I don't want to see Dr X". This might help, but I'm making no promises and there are no guarantees. I would suggest reading the websites of your nearest hospitals to find out which of them have a neurology department and have a list of staff you can investigate. It is always worth looking up what research papers any staff have had published. You might be able to work out what their research interests are. I would suggest avoiding anyone who has an interest in FND.
To do research into what papers doctors have written and to get some idea of their research interests, search for their names in these databases :
You should read up about seizures and FND (Functional Neurological Disorder). FND is considered to be a psychosomatic/psychiatric problem (mostly diagnosed in women, oddly enough - *rolls eyes* - because it is a new name for the old condition of hysteria) and getting that on your medical records would be a disaster, so you should be wary of seeing anyone who might label you with that. The reason FND is a disaster is because every symptom of every disease you ever have from now on would be put down to the FND. Getting proper help for anything health-related would become extremely difficult.
TSH 18.1 and no fT3, fT4? They need to measure fT3 and fT4 if TSH is abnormal. TSH can be abnormal (low) for a year or so after Graves' so patients should be monitored with fT3, fT4. You may be hypothyroid or much less likely have a pituitary tumour stimulating TSH. They need to measure TSH, fT3, fT4. This probably won't explain your seizures but it gets one thing out of the way before looking deeper.
ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Do you take levothyroxine well away from any other medication or vitamin supplements
I've been on low doses of epilepsy tabs for the last 6 months, not had a single seizure for the first 6 months of the year,
Exactly what is this medication …..perhaps affecting levothyroxine
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
Don’t forget the ranges Lucky - it put results into context
If you reply to this string with all the results and ranges (dates/times) was it fasting etc.
Are you supplementing at all Bs D +K2 MK7, Magnesium? Thyroid hormones work best when vitamins are not dragging along the bottom of the range and support our immune systems. With regards B vitamins are you aware biotin - in B vit complex and some supplements can affect a blood test for thyroid hormones?
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Have you looked up the information on thyroiduk.org It will give you good background info.
You really need to know your thyroid hormone levels, free T3 (fT3), and Free T4 (fT4) and the ranges for each. Without these results, it is impossible to know whether you are converting the T4 you are prescribed via levothyroxine into the hormone your body needs (T3).
Medichecks have 20% off their blood test results for January 2024 using code EARLY20. You can order now and you hadn't 100 days to use the test. They advise waiting until after the new year holiday season is over so your results aren't delayed in the post. Presumably also they will be low on staff to process the results.
I suggest you don't jump to conclusions about your results being the results of a tumour, there are other reasons for a high TSH.
High creatinine can be due to low T3, it is for me anyway. My kidney functon becomes impaired when my fT3 is too low in range for me personally, even though my fT3 is in range. For example I feel best when my fT3 is between 5.2 and 5.4pmol/L even though the fT3 range is 2.5-6.0 pmol/L.
A fT3 = 5.2 pmol/l, with (Range 2.5 - 6) is 77.14% through its range, i.e. just above the quarters of the way through its range. So you can see, just being 'in range' isn't enough.
I have also heard that gallbladder problems can be linked to low T3 levels, but I haven't currently got any research links to support this - if I find any I'll edit this post to put them in.
As you can see it is very important to know fT4 and fT3 levels from the same blood test.
When reporting blood test results it is helpful if you put them in the following format
Date,
levothyroxine dose,
TSH result with units and range,
fT3 result with units (e.g. pmol/L) and range,
fT4 result with units (e.g. pmol/L) and range .
Plus any other test results you had at the same time, including their units and range e.g creatinine.
The reason units are important is, for example 1cm is a lot different from 1m. Same with blood test results.
Hello there lovely people and Merry Christmas 🎄. I'm posting the results here from my most recent blood tests. It doesn't have all the information that you were asking about..... for instance, No fT3? I don't know why?This was from 17th November...... Here we go...........Thyroid Profile
Thyroid Stim Hormone *18.11. mU/L. 0.35 - 4.94
T4. 14.3. pmol/L. 8.0 - 19.1
Creatinine. *125. umol/L. 45 - 84
eGFR(MDRD aligned). *38. ml/min/1.73m2. 60 - 140
Calcium. 2.30. umol/L. 2.20 - 2 . 60
C-ReactiveProtein. *10. mg/L. 0 - 4
Ferritin. 86.7. ug/l. 10.0 - 250.0
Total Vit D. 135. nmol/L
Fasting Glucose. 4 . 8
That's all I've got I'm afraid. I hadn't been told to fast and it was fairly early in the morning. I'd taken my thyroxine the previous afternoon, and probably taken my supplements the day before too! I just didn't realise all this stuff there is to follow and I've been on Levo for 20 years! I had the radioactive drink then - I had Hashimotos as they call it. That's why I was wondering if it had harmed my parathyroid glands? I don't know. But yes I had an infected gallbladder this summer from a gallstone. I'm a mess!
Thank you so much everyone for your help - I've never felt so knackered in my life, by the way i'm just turned 59. I used to be fit! 🍀
It's usual for the NHS labs not to test fT3. That's why I get private blood tests. For me, my favourite is medichecks as that corresponds with the results with the tests from my NHS GP. I'm also intending to try monitormyhealth as that is an NHS lab and is cheaper.
Your FT4 is mid range, but your TSH is above range which indicates that your body doesn't think its getting enough thyroid hormone. There is scope to increase your levothyroxine dose, but your TSH is out of kilter with your FT4 result. I suspect you might be a poor converter of T4 to T3 but without a fT3 result one can't tell for sure. See your GP to ask if they can get fT3 tested. Can you afford to do a private blood test to get fT3 and fT4 from the same blood draw? Your high creatinine also suggests your thyroid hormones fT3 and fT4 are too low. As the blood test was less than 24 hours after last dose of levothyroxine, your FT4 level is artificially high.
Ferritin is good. Vitamin D is good.
Parathyroid controls Calcium levels in one's body. Your calcium is fine. It doesn't look like you have a problem with your parathyroid glands.
My first course of action would be to increase levothyroxine by 25mcg a day. Retest in 8-12 weeks time.
Thanks very much BB001! It's all so confusing, I don't know how you've worked it out! Is this why I feel so exhausted? They're always saying my blood pressure's high but I feel so stressed and struggling that I can barely function. Is that what happens when you don't have a thyroid? I just want to lie down........ Thanks again, I will follow your advice and hope 👍
High blood pressure is linked to hypothyroidism. Exhaustion brain fog are both more symptoms of hypothyroidism. Can you see a doctor to get your meds increased? With a TSH of 18 they should have contacted you. Are you in UK?
Thanks for your reply again. Yes, I'm in the UK, Aberdeen, but I haven't actually seen a doctor for years. Just went to get my blood test. They're the ones that starred some of my results so surely they can see something is wrong? They upped my dose from 125mcg Levo to 150 mcg alternate days but I don't feel any better. I think I might have to go private if I can. My thanks again to you and the Unlocked crew.
How long since you upped your dose? Personally I don't think your levothyroxine was increased enough. I would have thought they should have hoped it to 150mcg a day. Research says that TSH should be 0.5 to 1.0 once being treated with levothyroxine. I'm not surprised you feel dreadful.
A role of thumb guide to dosing levothyroxine is 1.6mcg per kg of body weight and the dose should be tweaked from there until symptoms are resolved. If I remember correctly, this is what the NICE guidelines for managing hypothyroidism state. To give an example, if you weigh 100kg, at 1.6mcg levothyroxine per kg you should be prescribed 160mcg levothyroxine.
Hi again BB001 and thanks for your help. Been feeling dreadful for a long time now! They 'upped' my dose just a few weeks ago when I'd had that blood test. Before that I was just on 125 mcg! Now it's 150 every other day...... Is that why I feel terrible? It's crazy how Doc's don't know anything about treating thyroid problems? I didn't know any of this stuff before so I thank you again for taking this time to help me. Won't be fobbed off again!
NHS lists high cholesterol and high bilirubin as causes. High cholesterol and liver problems can both be due to low T3.
It does look as though your first course of action is to find out what your fT3 and fT4 results are. Then fix any issues with them, particularly fT3 before doing anything else. This is likely to involve getting other vitamins and minerals at good levels.
Thank you very much for the info Mollyfan. Doctor did mention that my kidneys weren't doing too well, I don't think it's a new thing but I will ring anyway. Not that I've ever laid eyes on her in the last 3 years ..... Thanks again.
Hi Suesku and thank you for your reply. Is that low for Vitamin D? I've been taking a supplement for weeks now, I think it's quite a good one, but maybe not enough to keep me going.? I'll look into it! Thanks again for the pointer.
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High tsh after years of stability
High TSH levels.
High TSH levels
Having a terrible time with levothyroxine.......don't think I'm converting?
