Slowly working my way back to feeling fit again...diagnosed with hypothyroidism in January and the last time I saw the saw the GP (June), I immediately got in first and demanded an increase in levothyroxine (TEVA) from 50 to 100....before he read his own notes printed on my most recent blood test I obtained before the visit.....'stable subclinical hypothyroidism suggest annual review'..
(Didn't even want to point out he diagnosed me with hypothroidism and prescribed levothryoxine so clearly not subclinical).
Anyway then we argued the toss re !!TSH FT4 abnormal contact patient!! in bold on the blood results sheet.
I pointed out still feeling rubbish..gave him my symptoms. Explained my size (phonecall appt). I am 6ft 2, 85kg, male, active (used to be v active), working (Social Work)..with TSH of 7.6 (0.3-4,20 range) and 16 for FT4 (range 12-22)
...can I get 100..nope...75 Monday to Thursday then bloody 50 over the weekend.
Bloody idiot..ignored him and have been taking 75...then got hold of extra and have been taking 100...feeling much better. However still conking out at times (after big meal and later on in evening..is that hypothyroidism or something else?..does the hormone replacement just conk out at 5 o/c if you aren't taking enough?).
I don't know how this all works but 100 just about gets me through the work day and I take it easy in the evening, when a sort of sub cramp in main muscle groups happens (esp neck), tiredness, carpal tunnel like issue in thumbs and elbows (amongst other complications, collagen plaques build up etc...want an higher dosage to see if the plaques dissipate..because taking vitamin e is about as useful as smearing marmite on myself).
Now the plan is, I'm going to knock back to 75 for a week and stop 24 hours before next blood test..arrange a morning blood test and then go and meet my bloody stupid but incredibly over paid nemesis and have yet another boring argument with the idiot....before changing doctors to the equally bad one 100 metres away..in an attempt to get a right sized dosage of levothyroxine....
Also, as an aside..have folks experienced incredibly compact round stools on TEVA?..mine have been coming out literally like marbles..
Is there anything else I should be doing or am I roundabout on the right track?
Thanks in advance..your previous info has been invaluable.
V
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I am sorry for your predicament and you are doing the right thing.
Frankly, it appears to the majority on this forum that the only people who know less than us, is THE Doctor.
Their training is awful.
As you are male I'd expect you to have a higher dose - one which relieves your symptoms and you feel back to normal.
Before blood tests were introduced the doctor diagnosed according to clinical symptoms alone. We got a trial of NDT (natural dessicated thyroid hormones from 1892 onwards) and that contains all of the hormones a healthy gland would do) - no blood tests at all, just skill of the doctor.
Unfortunately that has been withdrawn a couple of years ago and, believe it or not, they made False Statements in order to do so. No apparent care that thousands on NDT were doing fine and felt well. Their symptoms began to return. How are these people called 'experts?' when they cannot assist their hypo patients and withdraw thyroid hormones (NDT) which saved patients lives up to the 60's when Big Pharma saw ££££s profits and introduced T4 onl (levo) whilst NDT has all the hormones a healthy gland would produce. Some people don't like NDT - just like some don't feel improvement on levo, so it is trial and error until we find a replacement which makes us well again.
NDT means 'natural dessicated thyroid hormones' made from the thyroid glands of pigs and contains all of the hormones a healthy thyroid gland would have.
Nowadays, unfortunately, all doctors seem to be so poorly trained re dysfunctional thyroid glands and are more interested in the TSH only rather than testing Free T4 and Free T3. They seem very concerned if our TSH is low or very low so think that the patient has become hypERthyroid and that's not the case. They then try to adjust levo to raise TSH by reducing dose. Rarely are FT4 and FT3 checked. (Free T3 and Free T4).
TSH i.e. 'thyroid stimulating hormone' is from the pituitary gland not the thyroid gland and it rises when the gland is not producing sufficient hormones.
I don't have the link to hand - maybe one of the admins can find it - but would note that if your doctor followed the dosing protocol of 1.6 mcg x each kg of body weight, you would be on alternate days of 125 mcg and 150 mcg [at least]. How he can justify half of this is a mystery.
I guess the positive is that your doctor isn't just hopeless with any female thyroid patients, he's hopeless across the board
I bet you only get TSH and free T4 tested. Can you try and get the full set done, even if you go private - ie TSH, fee T4, free T3, thyroid antibodies [unless you've had these before] - plus ferritin, folate, vit D and B12. Your levo works best when the nutrients are good. I've had success with my GP by saying this is the testing recommended by Thyroid UK - but my GP is happy to admit that I (now) know more about thyroid than she does ...
Assuming you are still seeing the same muppet as last time ?
You need to consider that only 1 week back on 75mcg may still show up as a slightly higher FT4 result than if you had been on 75 consistently. The half life of Levo is 7+ days ie half left after 7 days (less any thats been used) and half of that half left after another 7 ish days.
GP will not be able to tell from FT4 result exactly how much you've been taking, but you run the risk that if the result is higher than he want's he may not agree to an increase in prescription , which you need, if you don't want to have to keep buying your own forever.
It would be more likely to be accurate if you dropped back to 75 for 2 weeks , but there is a balance to be struck , since messing about with doses like this will unsettle your body's mechanisms, and you can end up feeling under par for a month.
The other element is the TSH , this is more of a problem. Since the TSH is really more of a window back in time, it can be slow to react to blood levels of T4/T3. this is the reason for the 6 week wait for a blood test after a dose change.
So even if you get the FT4 result to come back as accurate for a 75mcg dose, the TSH result will probable still come back showing it's reaction to the 100mcg dose.
If that TSH result is lower than they'd like, then you get the same problem ...... no increase in prescription.
There's no way of knowing exactly how long it would take your TSH to be representative of a 75mcg dose when you've been taking 100. Or at what point in time it will react to you reducing from 100 to 75 , or by how much it will rise.
Since your last TSH was a ridiculously high 7, then you probably won't have a problem yet with it going under the lab range, but nobody but your pituitary gland knows what it will be , or what the muppet will make of it.
But since most GP's won't be aware of any of this anyway, you can probably talk your way round whatever numbers show up.
I think they arn't even aware that the TSH is higher first thing in the morning and falls through the day.
In relation to the 'conking out at 4 pm' issue, i've always had that even when my TSH was below 1 and my FT4 top of range.
At that point i ended up believing i must have ME/CFS as well as Hypothyroidism, and 15 yrs went by.
I now know that that was the point to start looking into my conversion of T4 to T3, and possibly try adding T3 to levo, but you are not at that point yet.
You still need to be prescribed a decent enough dose to see if Levo alone works for you.
Suggest you get list of recommended thyroid specialist endocrinologists from Thyroid UK in case you need them...obviously there are quite a few in London
Meanwhile see different GP at next appointment.....
Getting full private Thyroid and vitamin testing recommended, first ...and definitely always get FULL testing before considering seeing any endocrinologist
Come back with new post once you get next set of results
Personally I would get FULL thyroid and vitamin testing (perhaps privately) while on 100mcg ....and just present dose increase as a “done deal”
Clear guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
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.
What vitamin supplements are you currently taking?
When were vitamin levels last tested?
Have you only ever had Teva levothyroxine?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
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
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)
Constipation is EXTREMELY common hypothyroid symptom
Daily magnesium, like Calm Vitality magnesium powder good as helps improve constipation and is often low when hypothyroid, especially if you have low vitamin D
Magnesium supplements best taken evening or late afternoon.....must be four hours away from taking levothyroxine. Start on low dose and increase until you get desired effect...too much can cause diarrhoea!
Thanks again Slow dragon...re TEVA..could the Mannitol be the reason I seem to be constipated and then, when I do poo..they come out solid.. like marbles..one after the other?
Really wouldn’t reduce dose ...it’s unlikely to affect a TSH in less than 4-6 weeks ...and can backfire..as reducing dose lowers vitamin levels and then TSH drops lower
Print out those guidelines...highlight dose by weight in everyone ...take copies into consultation and stick to your guns ....you probably need next 25mcg dose increase after next blood test
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I am shocked that a doctor could consider a TSH of over 7 as a stable condition which doesn't need extra Levo and only requires annual review.
One thing that is very obvious on this forum, over and over again, is that doctors don't have a clue what the TSH is of healthy people with no known thyroid disease. People who are hypothyroid usually need a TSH which is lower than that of a healthy person.
You should read this thread, and printing out the source links that supplied the graph and the table of data would be well worth doing :
I once printed out some information for my useless GP and he didn't even want to read it and brushed it aside. They are just sticking to NHS guidelines and going by the TSH which means zilch in my case. I would find a different GP if I was you. I have thought about moving surgeries myself but I know I would classed as a troublesome patient because I do argue with my doctor when he talks rubbish. I now take care of my own thyroid health and get all my blood tests done privately and if I need NTD I have loads stockpiled if and when I need it. Also Levo is really cheap to buy on line so you could always self medicate if your GP refuses to help. A lot of us have had to do this because the NHS is useless when it comes to treating thyroid disease.
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