My Mother who is 79 yrs old had her thyroid removed sometime ago about 40 yrs ago she had always been on 50mg of Levothyroxine medicine going back to last year she started getting lack of energy her concentration was bad and dizziness to a point of falling over she was taken into hospital they thought it was her heart but after every test they couldn’t find nothing wrong and sent home January this year her Gp ordered blood test and from there increased her meds to 100mg once a day and she was like her old self then 5 weeks ago her symptoms started again as before we went to her Gp but only advised to see a nurse there who was concerned she went to get the Gp who we never seen before and did some test and she said mums THS was dreadfully extremely low and sent us up the hospital so from there the consultant has ordered heart test again and mum has to stay in as a patient went to see mum yesterday and once again heart is fine nothing wrong I mentioned to the consultant about mums low THS but he said that I was talking stupid levothyrozine is just a happy pill but I believed it could be that maybe it needs increasing again Im sorry I’m no expert in this I’ve tried to make a appointment with mums old Gp but she has left could you maybe give some advice please I have asked the hospital to do a thyroid test but they say there’s no need to but I am really concerned for mum I know I had a problem with my thyroid and in the end I sort out help Thank you
For full Thyroid evaluation your Mum needs TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if been under treated
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Thank you I have just ordered a private test for mum when she comes out of hospital on Monday because no one seems to listen to us especially the consultant so hopefully doing this it may or may not prove it’s her meds but feel useless as I keep on telling them to test mum but getting no where Thanks again
consultant about mums low THS but he said that I was talking stupid levothyrozine is just a happy pill
Jesus wept ...Obviously this consultant knows zero about thyroid...
You need to get hold of her results from when left years/decades on just 50mcg levothyroxine
Her results must have been very poor for GPto have increased levothyroxine from 50mcg to 100mcg
However we frequently need to increase slowly....usually only increasing by 25mcg at a time. So, although she may need to be on 100mcg it may be too much of an increase initially
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.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
My mum is registered to doctors online services so will check she says she’s cold all the time and her skin is dry and flakey but it’s strange she was like this before then they increased meds and she was back to normal now she’s back down again I wish the hospital consultant would listen to me/ us but will keep on and also order test Thank you
What a dreadful experience - I'm so sorry you and your mother have been through this.
Levo is not a "happy pill" it is thyroid hormone and needed by anyone whose body doesn't make enough. In contrast, TSH is not a thyroid hormone, it is merely a message from the pituitary to the thyroid telling it to worker harder (high TSH) or not so much (low TSH). It therefore stands to reason that if you are supplementing with levo, your TSH goes down: ie your body does not need to produce as much T4 itself, as the medicine is providing some (or most) of what your body needs.
But for your mother to feel well, she needs to know what her body is doing now, while taking levo. For this reason, she needs her thyroid hormones checking - free T4, the inactive hormone produced by the thyroid, and free T3, the active hormone needed in every cell in her body, which is produced by the free T4 converting into free T3. Most of us, on levo, need both of these to be in the top third of the relevant reference range and often the top quartile.
The other blood tests SlowDragon mentions - ie key nutrients - are important, as her levo works best (and so she feels most well) when these are optimal - generally at least half-way through range.
Just looking back, I read your mother has Graves Disease.
It is therefore imperative that she is dosed and monitored on T3 and T4 blood test results.
I would imagine she has been under medicated for many years and her vitamins and minerals have probably nose dived as she will not have been able to metabolise her food well, and no thyroid hormone works well if especially ferritin, folate, B12 and vitamin D are not maintained at optimal levels, and by this I don't mean just being - ' in the range ' somewhere.
I'm with Graves and now after RAI thyroid ablation in 2005 manage lingering Graves, thyroid eye disease and hypothyroidism.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. Levothyroxine is T4 and is a storage hormone that the body needs to be able to convert to T3 the active hormone that the body runs on. T3 - Liothyronine is about 4 times more powerful than T4 and most people utilise about 50 T3 daily, just to function.
I think I read you plan to undertake a private blood test so once you have the results start a new post to include the results and ranges and you will receive considered opinion.
Putting Levo up to 100mcg in one go, after years on a presumably inadequate 50mcg in an elderly woman is insane.
It will have been a big shock to her system, and i'm not surprised that after a while of feeling good , she felt unwell . and that her TSH then went very low.
Surely she should have had dose increased very slowly and cautiously , by no more than 25 mcg at a time , or even 12.5mcg , and then retested after the 6 weeks etc. as per protocol.
Jeez, they say T3 is 'dangerous' and worry about us getting our hands on it, but they let doctors who clearly cant/wont even read instructions , loose on patients with safe little old T4 (Levo) and they can't even use that correctly. I'm not impressed with your mums treatment.
I really feel for you, trying to get decent treatment for your mum.
It's very upsetting watching your parents being treated without respect.
But hopefully you can find better help on here than you've had so far.
You are right , there is every need for your mum to have a full thyroid blood test Including not just TSH, but also FT4 and preferably FT3.
I wonder if it may turn out that 100 mcg is a bit too much for her, and her ideal dose might be somewhere between 50/100.
As for the Doctor who think's it's a 'happy pill' ... !?...my mother taught me not to think unkind thoughts.... but just for once i'll make an exception........ I hope he get's Hashimoto's and Levo doesn't work for him.
For a professional to state "but he said that I was talking stupid levothyrozine is just a happy pill " is someone I would definitely not see in the future. How would he like to have his thyroid gland removed and then given 'the happy pill' and find he is anything but happy but desperate instead to find a resolution to restore his thyroid hormones as he's never felt so unwell.
They are so insensitive and uneducated and can ruin people's lives as well as their families who don't know what's going on as the person is taking advice from a qualified Professional.!!!!!
We need a TSH to be around 1 or lower but many professionals think if it is anywhere up to 10, that we should be o.k. and don't need an increase. TSH is from the pituitary gland not the thyroid gland, and its job is to rise in order to try to flag the thyroid gland into producing more hormones.
Just something to look out for. Some time ago there was a cry for help on here from a lady who had a mother in a nursing home who was very up and down and it seemed to vary so often. The daughter was upset because she lived quite a distance away and couldn’t oversee her treatment. Turned out that the staff, even though they had been told many times, were giving the lady all her tablets at once but also forgetting to give her thyroid ones at times so the poor lady didn’t do very well at all. It also wasn’t helped that nurses didn’t have much in the way of continuity either. So I really hope you mum gets the care she needs.
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