I was diagnosed with hypothyroid 3 years ago after numerous symptoms. I was initially told the dose of 25 mcg would be increased later but this has never happened. I have had numerous telephone consultations over lockdown due to my symptoms becoming worse., but never a face to face consultation. I have constant fatigue, digestive symptoms and weakness in my legs. A scan last year showed thyroid nodules too. I recently asked if they could retest which she did but only my Serum TSH which came back as 4.0 in a range of 0.30-4.50 She said this was fine and needed no increase. Where do I go now as I am feeling seriously unwell at times and feel if I go back she will say its IBS which I have also suffered for over the years. I have always had a good relationship with her but can hear the frustration in her voice when I ask if I could try an increase in medication.
Any ideas folks?
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harryfinlay1
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My GP recognises my private tests, in fact when I told him I had had them done he asked me to forward them to him, which I did, I also emailed them to my consultant. They both asked where I had them done and were happy with that too.
I recently asked if they could retest which she did but only my Serum TSH which came back as 4.0 in a range of 0.30-4.50 She said this was fine and needed no increase.
25mcg is a starter dose for children, the elderly and those with a heart condition.
NICE guidelines clearly show two ways of starting Levothyroxine:
One is starting at full replacement dose worked out by weight then adjusting dose as necessary, the other is the British Thyroid Foundation's recommendation of starting with 25-100mcg (depending on age) and titrating in 25-50mcg increments every few weeks. So that clearly shows leaving you on 25mcg all this time is neglectful and, quite frankly, cruel as it's left you with symptoms that could have been avoided if you had been treated properly.
Your GP is obviously ignorant of how to treat hypothyroidism which, sadly, many of them are. Time to educate her! Use the following information to inform your GP that your TSH should be much lower and request an increase:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
.....
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
You can obtain a copy of this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
When doctors request thyroid tests, it's usually the lab which decides which tests to do. Some only do TSH and nothing else if this is in range. Some do TSH and FT4. Mine adds FT3 if TSH is suppressed.
Many doctors just see TSH in range and says everything is fine, as yours has done, without taking into account the actual thyroid hormones - FT4 and FT3 (TSH is a pituitary hormone, not a thyroid hormone). If you can't get the full testing done with your GP there is an NHS lab (MonitorMyHealth)which offers TSH, FT4 and FT3 test to the general public for £26.10 (with code from ThyroidUK) and as it's an NHS lab this should be acceptable to your GP. Maybe consider doing this and presenting the results to her, if she doesn't like the fact that you've had your own test done then if they prove your levels show a need for an increase invite her to do her own test.
Thank you so much for that, loads of really useful info there. I feel lockdown hasn't really helped either. Do you think the thyroid nodules are significant?
I think they can be present with Hashimoto's but I've no personal experience of thyroid nodules so rather than pass any comment I'll link you to the British Thyroid Foundation's article about them:
Have you had thyroid antibodies tested - Thyroid Peroxidase and Thyroglobulin - raised antibodies would suggest Hashimoto's. If you've not then it would be a good idea to have them done, if you want to do them privately then you'd need to choose another lab as MonitorMyHealth doesn't test antibodies.
You'd need Blue Horizon or Medichecks who do the full thyroid panel including antibodies.
Your doctor is unbelievably using a TSH range for a healthy adult and not a person medicating thyroid hormone replacement. You should be looking to reduce TSH to 1.0 or below.
SeaSideSusie has given you excellent info to present to her and it might be worth emailing/printing some off and sending before making another appointment.
Thyroid nodules are common in people with Hashimotos which is the most common reason for hypothyroidism. They are usually harmless.
First step is to get full thyroid and vitamin testing done ASAP
Can you see different GP
Which brand of levothyroxine are you currently taking
What vitamin supplements are you currently taking
Standard starter dose of levothyroxine is 50mcg and dose should be increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you so much, so glad I asked. Think private testing is definitely on the cards before my next appointment in two weeks. I can hear her sharp intake of breath now!
I recently had folate, ferritin and vitamin D tested. Folate scraped in at the very bottom of the range and Vit D was just scraping into range. I have recently started taking a methylfolate supplement and Vit D with co-factors. I also take a B12 sublingual as I feel I dont utilise it well despite it being in the upper end of the range
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually on, or near 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.
There's only one word for the doctor's comment to you and that is 'fool' because she has no idea at all - poorly trained in dysfunctional thyroid glands - or how to restore patient's health and wellbeing.
You can tell her that once we're diagnosed the aim is a TSH of 1 or lower with both Free T4 and Free T3 in the upper part of the ranges. It is not reduce the TSH to 'somewhere' in the range.
In that case, we're far better to get advice from forums like this as some of our members on TUK are much more knowledgeable than doctors or endocrinologists. We get good, free help/advice. Best of all we are assisted in getting our health back when on the correct dose of thyroid hormones, plus all our vitamins/minerals should also be checked, i.e. iron, ferritin and folate and B12 and Vit D.
Thank you for your reply Shaws, I have always been the type to just accept whatever the doctor tells me but feel too poorly now and it is impacting my life in a huge way so need to take matters into my own hands. kind regards
We can restore our health through the help/advice of others who've been in similar circumstances. If you want, you can click on my name and I've given a bit of history to, finally, being diagnosed.
You can get better and all of the members, some who are very knowledgeable are always willing to help despite GPs having very little knowledge of how to restore our health.
I think the majority of us always had faith in the medical professionals but, I too, found them wanting when I felt so very, very unwell and being told there was nothing wrong
Many on this forum are on it due to doctors/specialists being unaware we have dysfunctional thyroid glands.
Well, my mother had pernicious anaemia and got an injection 3 monthly for years.
At one appointment with GP (years later) she was told her 'bloods are fine so you don't need any more B12 injections".
Both my sister and myself thought that was 'good'.
None of us were aware of the effect of not getting B12 injections for P.A. as Mum developed stomach cancer due to withdrawn B12 injections. My sister and I had to look after her but we had to plead for extra pain relief towards her 'end of life care'.
p.s. if you click on my name you can read about my experience.
You will be able to feel much better as your dose increases but we have to learn through help/advice of members in order to return to good health and symptom-free.
Can you see another GP for a second opinion? They should be testing T4 and T3 as well as TSH. Also check vitamin D as it can be low in thyroid patients and mimics thyroid symptoms. Look at the NICE Guidance on treatment paths - your GP should be following it. 25 is a start dose! I need my TSH to be under 0.6 to feel well. T4 and T3 should be 75% up through the range ideally.
I had the same with a female GP - are they in the Morecambe Bay Area by any chance - the parallels are striking!
I was started off on 25 µg of levothyroxine and left on it for 6 months, a non-functioning zombie only able to drag myself out of bed by lunchtime, then exhausted for the rest of the day for having done so. The GP was working off the wrong range reading lab results, not competent to interpret them. Seems ludicrous that these issues are being dealt with by GPs who haven’t been sufficiently trained to be competent. I’m on 100 µg of levothyroxine now and it does seem to be working. I have had to fight for every dose increase.
I had to read-up to fight for my treatment. Sad situation all round really. GP’s I have come into contact with seem to lack critical scientific thinking. They are given an over inflated impression of their limited knowledge and indoctrinated in you only need to consider TSH and free T4. Oh if only it were that simple…….
Some of us are only just in range, or don’t fit into the NHS streamlined ranges at all. Statistically speaking many of us are outliers - outside of the range, but still relevant.
There is a dearth of knowledge in regards to thyroid diseases- apparently diabetes is the topical issue at present.
Don’t ever be a deferential patient again - now you know spread the word- people are living half lives because GPs confidently mismanage their conditions.
There’s quite a lot of info provided by our amazing administrators. If you work through it slowly I guarantee you will know more than GPs and possibly several endos- yes really
I completely agree with you and despite us feeling awful and find difficulty in carrying out what was normal 'chores' became impossible. I found out for certain that few doctors or any other medical person is completely ignorant of clinical symptoms that would put them straight onto a 'dysfunctional thyroid gland'.
I think there’s some good advice about educating your gp above. In my case, when I did try and tell the doctor some info about the thyroid, he was really annoyed. What worked was the ‘politician’s’, technique of staying on one point and saying it calmly again and again. Dont budge. Also ultimately if you don’t have success could you change gp or surgery? (Is that an option?)
You need to move doctors surgery really. Then begin again. It's worth doing private tests just so you know what is what and can ask advice on here. Docs will order their own tests in addition but rarely test T3 so it's worth you knowing that.
If for some reason you have to stay with this doctor ask to me referred immediately to an Endocrinologist and if they refuse that ask to make a formal complaint.
GP seems just to follow range information from the blood test people, who have no idea who you are, what age etc., it’s a crazy system.
I am having a real fight with my GP who will not increase thyroxine above 112 1/2 per day and my initial consultant appointment (after moving house) is buried in the system...
unacceptable...keep looking and insist on full panel. .i felt like death at 4.0.....i take an NDT sublingually to bypass digestion as it upset my stomach also...i keep my tsh close to 1.0 to feel well..my endo gives me super B injections once a month and i rarely have fatigue anymore which at one time i was in bed more than not...i am celiac so i am on gluten free diet..i supplement wth mainly and most importantly selenium and d3wth k2. on amazon...one capsule both supplements..k2 directs calcium to bones which is only place you want it to go...
I’m so sorry your going through this. I hate to say this but I have been made seriously unwell by two GPs and both were women. If you get a private test they don’t have to accept the results but if your request they be added to your medical records they have to do that. Monitor my Health is an NHS lab so she can’t poo-hoo that. If you get no joy there write and ask for referral to endocrinologist. Address it to her and practice manager and ask for that also to be added to your medical records. Hopefully she will realise that your not going away and start to ask some questions or read up on it. There are ways to complain about the treatment but try those routes first. Good luck .🌹
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Rapidly deteriorating but GP refuses to increase Levo dose based on blood results!
Need to have a bit of a rant!
Just a moan to let off steam about my GP practice
Has anyone used a private GP to get prescription after NHS GP has refused?
Need to get proper full testing done but cannot afford the expensive private sector and have Gp fed up with me
