Just had bloods back where GP only requested TSH, they have come back as 2.6. I am still feeling symptomatic, so fatigued, aching body, brain fog. I am not functioning. My gland is enlarged and jaw, throat are sensitive to touch. I'm waiting an appointment for an ultrasound scan.
Do I request the GP to consider upping my levothyroxine again?
Previous bloods:
Oct 2019 - TSH 6.88 T4 12.8. Began 25mcg Levothyroxine
December 2019 - TSH 10.2 T4 14.3. Upped to 50mcg levothyroxine
February 2020 TSH 5.33 T4 16.9. Upped to 75mcg levothyroxine
May 2020 TSH 4.68 T4 17.1. Considered Satisfactory by GP.
November 2020 TSH 5.5 T4 14.6. Upped to 100mcg of Levothyroxine
January 2021 TSH 2.6 T4 not done
Written by
Kpresto3
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TSH is still too high, the aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. Unfortunately many GPs/Labs don't test FT4 if TSH is within range which is a big mistake.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine 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 recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Do you do your thyroid tests as we always advise:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can 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. 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 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.
I have used this information today, the doctor didnt call me. Left a message on the portal, has refused any additional bloods and medication increase I want to cry. The usual GP who deals with this is on leave for 2 weeks.
Yes request 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later
Just testing TSH is completely inadequate
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
About 90% of primary hypothyroidism is autoimmune thyroid disease, so it’s likely
Since diagnosis, have you had thyroid antibodies tested and vitamins?
If not, request they are tested
Ask GP to test vitamin levels NOW
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
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
A doctor left a note for me on my online portal, was meant to call but just dropped a message instead of actually speaking to me. Who said I have reviewed your TSH level on the bloods taken on 18th January 2021- it is 2.57 which is normal and is in the middle of the normal reference range (0.27-4.2). I think you should continue on your current dose of 100 micrograms daily of levothyroxine. I suggest you have a repeat TSH blood test in 3 months time to ensure the TSH remains stable in the reference range as per NICE guidance. Please add this to your diary and book in for this nearer the time. I will inform Dr xxxx on her return regarding this plan. I can see that your heart blood test and kidney function blood test were normal and there was no protein in your urine. I suggest we await your thyroid ultrasound and you then have a follow-up with Dr xxxx on her return. This ensures continuity of care, which will serve to optimise your management overall. I hope you are happy with this.
And that underlines exactly why there’s over 115.000 members on here
Re contact your GP and explain how dire you are feeling
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
"May 2020 TSH 4.68 T4 17.1. Considered Satisfactory by GP."......Should read "GP care/knowledge considered unsatisfactory" .
And then they left you on that dose for 6 months....not impressed. TSH of 4.68 showed clear need to increase dose further, or at the very least (if the fT4 was at the top of the range) check TSH again in a couple of months.
At first glance this just looks like they've taken over 12 months to get to to a place you could have got to within a few months, and by the look of current TSH at 2.6 and your symptoms it seems you still need a further increase, which is not surprising since the most common dose of Levo is somewhere around 125mcg for many of us.
Was there a reason they started you on just 25mcg instead of the usual 50 mcg ?
25mcg is recommended for a more gradual start in elderly patients , or those with heart problems , or those who've been very hypothyroid and undiagnosed for a long while.
I have had real battle with this. I also have hashimoto's, and my gp doesn't seem to have a clue. I am very awful st the moment I'm 32 with a 4 year old. My life feels awful, in existing, I can't play with my son or keep up with house work, and working time is getting me down. I asked for an I crease and the doctor who responded has said no (doctor who usually deals with this is on leave for 2 weeks).
There was no reason given for starting me on 25mcg, they just was a starting dose. But from what I've read in the forum it should be based in weight.
This GP was meant to call to talk to me today but messaged instead and said the following
I have reviewed your TSH level on the bloods taken on 18th January 2021- it is 2.57 which is normal and is in the middle of the normal reference range (0.27-4.2). I think you should continue on your current dose of 100 micrograms daily of levothyroxine. I suggest you have a repeat TSH blood test in 3 months time to ensure the TSH remains stable in the reference range as per NICE guidance. Please add this to your diary and book in for this nearer the time. I will inform Dr xxxx on her return regarding this plan. I can see that your heart blood test and kidney function blood test were normal and there was no protein in your urine. I suggest we await your thyroid ultrasound and you then have a follow-up with Dr xxxx on her return. This ensures continuity of care, which will serve to optimise your management overall. I hope you are happy with this.
But from what I've read in the forum it should be based in weight.
That's only partly right and is not set in stone.
NICE guidelines say:
1.3.6 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.
Then goes on to say:
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
So even if the GP does choose to start with dose by weight it doesn't have to stay at that dose, it is adjusted according to what you need to achieve wellness.
The old guidelines (before the revised ones in 2019) stated a starter dose of 50mcg unless a child, elderly or the patient has a heart condition, then retest every 6 weeks and an increase of 25mcg where necessary.
So it's all about how much the individual needs to feel well. The problem is that many doctors don't see a human bean they only see a computer screen, nor do they want to know how we feel, they are taught that it's only numbers that matter and if your number falls within the range then everything is perfect as far as they are concerned, you can't possibly not feel well.
"I have reviewed your TSH level on the bloods taken on 18th January 2021- it is 2.57 which is normal and is in the middle of the normal reference range (0.27-4.2). I think you should continue on your current dose of 100 micrograms daily of levothyroxine. I suggest you have a repeat TSH blood test in 3 months time to ensure the TSH remains stable in the reference range as per NICE guidance. Please add this to your diary and book in for this nearer the time. I will inform Dr xxxx on her return regarding this plan. I can see that your heart blood test and kidney function blood test were normal and there was no protein in your urine. I suggest we await your thyroid ultrasound and you then have a follow-up with Dr xxxx on her return. This ensures continuity of care, which will serve to optimise your management overall. I hope you are happy with this."
note the use of language..... i think , i suggest, i hope you are happy with this.....
This is a partnership , and a JOINT decision.
You are NOT happy with it ... let them know this.
You have three choices;
1) Put up with it and wait 3 months .
2)approach it head on, leave a message for the Doctor who's away to phone you when they return in a couple of weeks, and then firmly say you wish to try an increase to see if it improves how you feel, point out that there is plenty of room left in the TSH range for this, and that you are happy there are no risks to your health as long as TSH stays within range . If they wanted to say you are in danger of overmedication , they've cocked up , because they haven't done an FT4, but you could invite them to do one if they try and use overmedication as reason for denying an increase.
3) i'm not suggesting this attitude is for everyone .... but i never thought it was solely up to the Doctor how much i took, i thought it was up to them to diagnose me and prescribe the tablets, but i'm the one in my kitchen in the morning , and i decide what i put in my mouth.
When first diagnosed 20 yrs ago it was explained to me in general terms that as more of my thyroid died , i would need to take more Levothyroxine to replace it. And that the dose would be started at 50 to get used to it and increased gradually until it was right.
I don't remember ever being told to increase dose after the 50mcg......I had a blood test , the receptionist reported it was 'OK ', and because of what i'd been told , and because i 'd felt a bit better for a few weeks/months but then less good again, i increased what i took until the next blood test so that they could see the results i my blood next time i went.
I told them at the blood test what i'd been taking.
.....and since each time the next blood test came back with TSH still within rage and T4 still within range, they didn't have a reason to tell me to reduce. and the GP increased the prescription.
I can't remember how it was that i didn't run out of tablets......i think i just put my repeat prescription in a bit early, or maybe i already had enough spare from previous prescriptions that i'd put in early/ got extra to travel with.
I realise this is treading a fine line between 'going behind their back' , and 'doing it first and telling them later'..... you'd have to make your own mind up about the wisdom of my approach. But i'd do the same again if i was in that position now , with the one difference that i would only increase by 25mcg or less at a time now , and i'd ask to see my blood results.
I was 37 and otherwise strong and healthy, with 5 yr old and 12 yr old kids.
I do NOT suggest increasing dose in 50 mcg steps to anyone , i had no idea what i was doing , and no access to the blood results at the time. But have written this reply to show that 'doing it myself' didn't drop my TSH below range until i'd obviously 'over-shot' by a long way, and i suspect that if i'd waited for the GP to suggest an increase from my original 50mcg it might have been a very long wait.......
Thank you everyone for your helped. I let this GP I know I wasn't happy and she actually called me for a talk. Was a bit standoffish to begin with, asked my symptoms I explained them all. Because of my goitre and difficult swallowing and because I liked guidelines I would need an endoscopy within 2 weeks. I got very upset and cried, explained that advocating myself and explained I have medical trauma due to my labour with my son and sudden death of my sister (medical complications). She backed tracked and was very kind and nice to me.
Long story sort, she spoke to an endocrinologist who said they were happy with my levels, and that the levels I suggested 0.4-1.5 are too low?!?!? But have agreed to a trail of upping it to 125mcg.
I dont need an endoscopy as the problem is in my throat and awaiting a ultrasound and barium swallow.
She said about having a meeting and getting to know me and what my life is like so even though it was stressful and upsetting I've pushed things forward
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