My Dad is 72 and has hypothyroidism. I also have it as does my sister. I recently got tested for the antibodies and they were 257 which I believe indicates Hashimotos. I Don't actually have many symptoms though so v.lucky. i am 33 and on 100 levothyroxine.
My Dad has terrible symptoms and I never considered it could be related to his thyroid as he was always told his bloods were normal (he has been on 75 levo for a long time). Recently his TSH was 4.8 so they upped his levo to 100. However he has never been tested for antibodies and when I asked doc to test his T3 he said he was unable to request T3?! Has anyone else's GP ever said this. Seems ridiculous. Would love to get my Dad some thorough testing done to see what is going on. Have found a very good endocrinologist for him but he is booked up until September. Does anyone have any advice on what I could do to help my Dad in the meantime? Where to go for good testing or what to request through GP?
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Needleandthread44
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I’m sorry to hear that your dad isn’t feeling great. What GPS say are ‘normal’ thyroid levels may not be ‘optimal’ for your dad.
Most GPS and even some endocrinologists don’t routinely test FT3 and some only test FT4 if TSH is not in range. That’s why do many forum members test privately for TSH, FT3, FT4, thyroid antibodies and key vitamins (ferritin, folate, vitamins D and B12). Many members use Medichecks or Blue Horizon.
I recommend testing thyroid levels and key vitamins, then posting results on the forum for advice prior to booking an appointment with a private endocrinologist.
Yes.....usually 6-8 weels after a dose increase and then retest.However if it were me I eould test the key vits to check if they are optimal to ensure best uptake of the levothyroxine. By the way B12 levels drop as you age and supplementatoin as we age is vital. This is because stomach acid reduces making it harder to abosrob the b12. Your GP should be willing to check the key vits. I would ask for that before doing them privately.
Thank you. His b12 has been a whole other story!! Was/am convinced he has pernicious anaemia but doctor says no and won't give him b12 injections. Difficult when there is no definitive test!
He said he has never been anaemic so can't be PA but according to the helpful people on the PA forum you don't actually have to be anaemia to suffer from PA. He tested negative for intrinsic factor antibodies but I think it only shows up in about 50% of cases. Was also just reading that coeliac disease can also cause malabsorption issues. Need to check if he has been tested for that! Its a minefield!
Aw Well I have B12 deficiency & have never had anemia and tested negative twice for intrinsic factor. I had some awful neurological symptoms that only abated with b12 jabs daily. So yes that test only picks up 50%. Your doctor is ill informed. Given your Dads age and his symptoms the likelihood of b12 d is much higher. So ask him to test b12 levels. Its a simple blood test. Or you can get it done with finger prick test in post with Medichecks. Am not sure why doctors are so anti exploring this side if things.....by the way you cannot over dose on b12 as you excrete put like vit c any you don't need.
Coeliacs test is a good point and worth checking. Does he have any digestive issues. Ive been diagnosed with Gluten Ataxia.....so wish they had the knowledge of gluten intolerance years ago. Hey ho. For gluten intolerance you have to go yo one of the specialist gluten ataxia centres in the UK. One is Sheffield, I think the other is London.
Thanks for your reply!So originally doc did test b12 and it showed up v.low. I couldn't understand why as he was eating eggs and meat daily. Knew it had to be absorption but doc prescribed oral b12 so didn't do anything. When tested again after 3 months b12 levels looked normal but he felt no better. The issue is with the serum b12 test though, doesn't show how much can actually be absorbed. Do you self inject? Did doc ever prescribe you b12 injections? How frequent do you inject now?
He does have digestive issues yes. Going to ask Doc for gluten antibody test as first step, do you think that is worthwhile?
Thank you for your reply. The brand is Aristo? Doubt it is the same brand all the time, why do you ask? Do you know this brand?
Sorry I am still just learning about all of this but why are vitamins so important when on levo? He has a history of low b12 ( I thought the cause could be pernicious aneamia as he eats eggs and meat daily) and more recently low b9 so is currently on 5mg folic acid. Not sure if he has had other vitamins checked. Should I ask his doctor to check other vitamins?
I will ask for the thyroid antibodies. What are the normal ranges, I couldn't find this online.
Which are the tests for coeliac? Are they pretty conclusive? I have requested his full blood results history back to Nov 2020 when he was first shown to have low b12 (he was put on oral b12, made no difference to his symptoms which is also what made me think it was PA. He is currently paying privately for the b12 injections). I will be able to see tomorrow his blood history and then can request further bloods. Any recommendations would be much appreciated.
Yes in UK, N.Ireland.
Will definitely give the private testing a go too in 6 weeks or so when he has been on his increased dose for a while.
Just hoping to get some insight to what is going on!
Thanks so much for your help. I really appreciate it.
You will see thousands of posts on here discussing vitamin testing and supplements
When not on high enough dose levothyroxine, and therefore still hypothyroid, we frequently develop low stomach acid
Low stomach acid leads to poor nutrient absorption and low vitamin levels as direct result
Lower vitamin levels are more common as we get older too
Because medics tend to under dose and keep people hypothyroid, it’s very important to regularly retest vitamin levels at least annually and maintain OPTIMAL vitamin levels by supplementing
Low B12, vitamin D and low folate are the most likely
So I checked with Dad today, he was prescribed 100mcg Levothyroxine a few weeks ago (up from 75) and received Aristo but is 'using up' his old prescription of 50mcg Northstar and 25mcg Wockhardt (making it up to 100mcg). Is this advisable? Is there an issue with switching brands? Are any considered to be 'the best'?
Also got a copy of his most recent bloods today (taken in April)
TSH: 4.68 (0.27 - 4.2)
T4: 16.7
T3 & Antibodies: not available. Will request antibody test through GP.
Note: the GP hadn't actually advised him to increase his levo based on these results and only when I queried something else did another GP notice the result in June and advise a 25mcg increase.
Serum b12: 406ng/L (191-663) (his serum b12 was 137 in November 2020) has been around 400 at all tests since then after being prescribed oral b12 but no improvement in symptoms. Has recently started paying for private b12 injections after GP refused to prescribe these based on 'normal' serum b12 levels.
He is not taking any vitamin supplements other than the 5mg Folic Acid + the b12 injections (not sure how long he will be taking these as £35 per injection).
Other things to note (not sure if relevant)
- high RBC count 5.63 (4-5.5)
- high mean platelet volume 10.8fl (8-10)
- high serum creatinine 106 (59-104)
He has the test for TTG (Coeliac?) In February 2021 which came back as 0.3U/ml (0-7). Does this rule out Coeliac disease? Any point in re-testing?
I am going to speak to his GP this week,possibly tomorrow, are there any tests that you think I should request?
Really really appreciate the advice. Have been struggling to know what to do for months. This forum is so helpful.
Request vitamin D and ferritin are tested or get FULL thyroid and vitamin testing done yourselves after minimum 6-8 weeks on increased dose levothyroxine
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
How long ago was your dad diagnosed as hypothyroid
The fact he had coeliac blood test done (by GP?) suggests that (like over 90% of primary hypothyroidism in U.K.) his hypothyroidism is most likely autoimmune thyroid disease
Was his mother, or any other close relatives hypothyroid or other autoimmune diseases
When left under medicated on inadequate dose levothyroxine, we frequently develop low stomach acid and poor nutrient absorption as direct result
Low vitamin levels extremely common as direct result
Low vitamin levels tend to lower TSH as well, because we need good vitamin levels for good conversion of levothyroxine (Ft4) into active hormone (Ft3)
Poor conversion results in higher Ft4 and lower Ft3
Many patients on levothyroxine need to supplement vitamin D and vitamin B complex continuously to maintain optimal vitamin levels
Is you Dad still taking prescription folic acid?
Once he finishes the folic acid …
Recommended to replace this with a good quality daily vitamin B complex can be beneficial. One with folate in, not folic acid
Daily vitamin B complex can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your Dad’s serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
So so helpful - thank you!!! Will follow all of this advice. And yes, his mother was diabetic. I am now wondering if his b12 deficiency which I was convinced was due to Pernicious Anemia was in fact due to being undertreated for his thyroid. He has never had T3 tested since being diagnosed (I think around 10 years ago!). Just not sure how I would know whether he needs the b12 injections or something else.
One question - I am so keen to get the full thyroid testing done including vitamins as really want to see what his T3 level is + antibodies + vitamins as they currently stand. Even though he has been on increased dose of levothyroxine for around 2 weeks now do you think I could still go ahead and test now and then do it again in 4-6 weeks time? I know there is a cost involved but I am desperate to help him!
Many people find different brands are not interchangeable
Which brand of levothyroxine does your Dad normally get/ prefer?
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, Glenmark 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 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
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 your Dad normally takes his 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
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.
Hi. I used to get T3 tested along with other tests . I am very lucky and get a named person prescription from my GP. When he requests bloods he includes T3 but the lab ignore it. My Endo, who is great, sends me a blood request form prior to my annual phone call and she includes T3 on the form and the lab does it. This means l only get one proper test each year. It’s not right but that’s how it is. Good Luck with your dad. Yvonne
I’m sorry to hear about your dad. My GP has always refused to test T3 & T4 saying he is not allowed to? I was admitted to hospital in February this year & whilst there I asked a consultant ( respiratory) if she could add T3 to my blood test. She also replied saying the computer will kick it out it’s set not to allow T3 & 4!!!🤷🏻♀️I went privately ( local) for these tests which was over £100.
I recently saw an Endocrinologist who has increased my Thyroxine from 75mcg to 100mcg daily & have a blood form to retest in 8 weeks which includes T3.
It certainly isn’t ideal at all but guess it’s a postcode lottery with testing as usual. X
Note that some of the less comprehensive tests can be done with just a fingerprick blood sample, more comprehensive may need a full blood sample of the kind that you'd get done in a hospital or doctor's surgery. Phlebotomy isn't usually free, although I did some tests via Spire Hospital several years ago, and on that occasion phlebotomy was included in the price - but services may have changed since then, and the prices will definitely have risen :
I think it was so much for the consultation (which was useless) it was a private GP who just talked about her brother who had cancer. Then so much for phlebotomy then the tests including Thyroid antibodies. Hubby’s just told me it was £80 not £100. I only have one decent vein which sometimes hospital struggle with ( I’ve had to sit with arms in a bucket of hot water for 30 mins before now when having an infusion) so opted for this as really needed that T3 & 4 which got me an appointment with an Endocrinologist. But thanks for the info. I certainly would go back there again that’s for sure x
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