I would appreciate some help. These are my latest results, which came through yesterday:
Component Your Value Standard Range
TSH 9.22 mU/L 0.35 - 5.50 mU/L
Free T4 11.1 pmol/L 10.5 - 21.0 pmol/L
I'm currently on 75mg and I got a text from my GP saying that my results are fine and to continue as is, check again in 3 months. I still feel tired, sluggish and constipated. Shouldn't I get an increase here? I can't speak to anyone, there are apparently no appointments.
Blaziken
Your doctor is obviously very ignorant about how to treat hypothyroidism. The reference range of 0.35 - 5.50 mU/L should be telling him that you are undermedicated, you are now diagnosed and should be within the range.
Here is some information that you can discuss with your GP about where TSH should be:
From GP Notebook
gpnotebook.com/simplepage.c...
Target level for TSH during thyroxine therapy
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
From GP online
gponline.com/endocrinology-...
Under the section
Cardiovascular changes in hypothyroidism
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, point out:
where it says
Guideline development process
How we develop NICE guidelines
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
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).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK
Email : tukadmin@thyroiduk.org
and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.
You need an immediate increase in your Levo, 25mcg now and retest in 6-8 weeks (not 3 months).
Always advised here, when having thyroid tests:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
healthunlocked.com/thyroidu...
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
Thanks SeasideSusie. I have emailed them and asked! So annoying that they waited until late on a Friday to tell me this. What if they still refuse an increase? I just want to feel better 😕
I actually got an email response from my GP! I'm getting 100mg to be taken on Saturday and Sunday only. This seems like a very, very tiny increase and barely worth it.
Well, it's something. You could go with it for now, get retested in 6 weeks or so, you might have a small increase in your FT4 (if they bother to test it) and your TSH may go down a bit but it will probably still be over range, so you can then negotiate increasing to 100mcg daily.
OR
Send the information I've given above, maybe email it or print it out and hand it over to the surgery in an envelope marked "Private - for the attention of Dr .....". Include a letter saying that you wish to have your dose increased to 7 days a week rather than just the extra 2 days in an attempt to bring your TSH down to a level outlined in the evidence included. Say you would like your letter and accompanying information added to your records and acknowledgement that your GP has read it and will be increasing your dose.
Have a read through this post too, there may be other useful information:
healthunlocked.com/thyroidu...
Is there a different doctor in the practice you can see?
You are correct .. it is a ridiculously small increase for someone who's TSH is still way over range at 9 .
The increase ought to be to *100 mcg every day . ( edited typo)
and whichever muppet wrote "fine , carry on on, repeat in 3 months" on seeing a TSH of 9 needs a proper telling off by their practice manager .
personally i'd email back and ask for a second opinion on the dose increase , and ask for an explanation of why a TSH of 9 was deemed acceptable.
Unfortunately it's impossible to see a doctor of your choice at this practice. I am going to call on Tuesday armed with this information. Thanks for your help
Just a tip when using this group. If you want someone to know that you have replied, and for them to get a notification, you need to use the reply button directly under their response to you.
Alternatively you can tag that person by typing @thenthepersonsname SeasideSusie
I didn't know that. Thanks!
I am sorry to say that I believe many GPs have not been trained sufficiently about dysfunctional thyroid glands.
My TSH was 100 and I was told by the GP that I had no problems at all.
It is thanks to Thyroiduk and this forum that I was able to restore my health.
Usually we should be diagnosed if TSH is over 10. Unfortunately, many GPs seem to have no knowledge whatsoever.
Don't take thyroid hormones replacement before a blood test (if you've been prescribed levothyroxine) and it should be an early a.m. test and fasting (you can drink water don't take thyroid hormones before - take afterwards. Also request a print-out of your results of your thyroid blood tests - for your own records.
If you have a query members are helpful and will respond.
**edited
5 x 75mcg per week and 2 x 100mcg = 82mcg per day
Better to have an increase to 87.5mcg every day for 6 weeks (adding 12.5mcg daily)
Retest ….then increase to 100mcg daily
Which brand of Levothyroxine are you currently taking
Many people find different brands are not interchangeable
Request extra 25mcg tablets to (initially) increase by 12.5mcg per day
But you’re highly likely to need to be on at least 100mcg daily
Can you see/speak/email different GP
Or email this GP the guidelines
On levothyroxine TSH should always be below 2
Previous post with relevant details
healthunlocked.com/thyroidu...
Thanks. The brand I get sent is Teva. I use Pharmacy2u.
Everything I have read says to test every 6 weeks but mine insist on 3 months. So frustrating! I'm going to try phoning them when they open again.
Presumably you have only had Teva brand?
Perhaps try a different brand next prescription?
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free…..But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
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.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
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.
academic.oup.com/jcem/artic...
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).
Typo alert SD.
dose was 75mcg day .. gp increased to (75 x5 days / 100 x2 days) 82mcg day.
Excellent advice on here. You really need you dose increased to 100mcg because not only is your TSH ridiculously high for someone on thyroid medication but your ft4, is low.Personally I would insist on the full 25mcg increase to 100mcg of levothyroxine EVERY day. They are very ignorant your GPs and need training!!
GPs receive a ridiculously low amount of training for hypothyroidism so many dont know, despite the fact it will be common in their practise. . Seems some one is getting confused by the diagnosis range and where a patient should be once on treatment.
Honestly your best bet is to also gen up and become an expert patient (with lots of support from this forum). A good starting point is reading Living with your Thyroid by Barry Durrant Peatfield. You can often pick up copies secondhand online..
At least you can take your 100mcg today and tomorrow..... Frankly if it were me I'd take it on Monday too and then tell them on Tuesday that is what you have done and send the info through what Seaside Susie has sent you. Request prescription for 100mcg of levothyroxine.
I am so so sorry you have had this response..... It is a ridiculous one I have to say!! You must be feeling rubbish. Hugs x
Sorry meant to add as well as emailing them I would also ring (I know long queue) then insist on an emergency appointment. It's woefully wrong of them. None of us like kicking a fuss up but this is YOUR health....... they don't have to live with the consequences of their dreadful ignorance but you do.
Good luck. Keep posting on here. There are peoe on her with loads of knowledge and skill. Xx
I would agree with waveylines
Get an appointment and push hard to get dose increase to 100mcg daily
But meanwhile increase by 25mcg every other day (cut a 100mcg into 1/4’s)
I really feel for you, you are massively under treated and must be feeling horrible.
Another study to add to your argument…. Showing that all cause mortality increases with a TSH above reference range. Above 10 it doubles and you are almost there…. I would insist on an increase to 100mcg a day immediately. If they still refuse I would write a polite letter to the practice manager.
that’s ridiculous. You need an increase in medication. No wonder your feeling bad. I’d speak to the gp surgery manager about this. You are clearly under medicated. Your TSH needs to be around 1.00 anything over 2.5 you’ll have symptoms. The aim is to be symptom free when properly medicated.
Thanks to everyone that has replied, and for all the great information. I’m calling them when they open again on Tuesday to get a proper increase.
I just don’t understand why they do this? Surely the whole point is to make patients feel better.
Gosh, just makes one want to spit! Hang in there as there’s lots of help here to educate your apparently ignorant GP!
It seems to be a thing with GPs to underdose. They seem to think if you overdose by as much as 1 in any range, you are going to explode. It is straightforward ignorance. At some point they must have been told that Levo is the only treatment, that going over any range is so dangerous and to ignore what the patient is actually saying. So frustrating!
I have nothing to add, but with your numbers i would be a basket case who wouldn't be able to function.
Your doctor is crazy! I feel for you, I’d be an absolute wreck if they were my numbers. He should be listening to your symptoms and paying attention to your blood results. I’d ask for an endocrinologist referral asap.
All the best, I hope you get sorted very soon !
Latest blood results 
Recent results - dr refusing to increase levo
Persuading GP to increase Levo
