My GP refuses to increase because my last blood test done in January showed my FT4 at 19.4 and he said he doesn’t want it to get any higher than that!
GP should be retesting levels now …..4 months later
When were the results in image done
ALWAYS test early morning and last dose levothyroxine 24 hours before test
ESSENTIAL to test vitamin D, folate, ferritin and B12 before consultation
Is your hypothyroidism autoimmune?
Have you tested both TPO and TG thyroid antibodies
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
The results in the image were from test taken on 20th February. I always make sure I test before 9am fasted and Levo taken 24 hours earlier.
I tested positive last June for both antibodies, TPO and TG.
I am taking the FTF test with Medichecks including antibodies on Monday as advised by private doctor. They also have my last vitamin test results so will ask them about getting up to date ones completed at consultation. I don’t have time beforehand as the appointment is on Tuesday. Due to a cancellation I am seeing them very quickly.
Really have 0 faith in my GP surgery. I have spoken to every DR in the surgery about my thyroid and they all say the same thing. “Your blood tests show you are within range”.
So, I’m done battling with them. Hoping I can take control of this myself with the help of this private doctor.
Feel sorry for you Wdown, iv too had to go private, I’m just starting this journey long story but I’m also on 50 T4 but after 7 weeks I’m getting some old symptoms back. I’m no expert but thinking of you.
Thanks FoxyTed. Sorry to hear that. Seems that going private is becoming more and more inevitable with a lot of people suffering this condition. I’m almost a year in on my journey and still on 50mcgs.
I’m afraid I’m done with my GP at least in regards to my thyroid condition and will take matters into my own hands.
I’m done with just existing. All the small ounces of energy I have left goes into dragging myself to work and back every day. That’s it I’m exhausted by the time I get home and at the weekends. I’m not living of enjoying life in any way anymore.
I get exactly what you are saying, no point going to doc. It’s a real disaster the amount of people that are left either poorly treated or not treated at all. I have had crashes on and off this 3 years was truly ill a real nightmare, I knew nothing about thyroid and was only having TSH tested at surgery. You prob need an increase now, feeling such fatigue is not Pleasant. We have to educate ourselves as much as possible - Tk goodness for forums like this.
I agree with you. I knew nothing about thyroid conditions until I found this site. In fact it was this site that helped me push to get a diagnosis. I am so thankful for this community and the incredibly knowledgeable people that give amazing advice. I don’t feel so alone with this condition thanks to this forum 😀
Thanks SlowDragon. Vitamin levels were tested last year. So I am overdue getting them tested again.
Had full blood count done in January and apparently I am not anaemic but I have sent that to the doctor I’m seeing on Tuesday for their opinion. Ferritin was low last year.
I supplement with Vitamin D3, K2, magnesium Jarrows B12 and vitamin B complex, zinc, selenium and Vit C which I take at least 4 hours away from levothyroxine. I also stop B complex a week before blood test.
Vitamin D and folate were low last year as well. But I have been regularly supplementing since.
I’m on TEVA which I know most people don’t get on with but I found I felt better on it so I have stuck with that brand.
I’ve tried going gluten free for many months but didn’t feel much different so have gone back on normal bread etc. However, this private doctor has a Hashimoto’s protocol so if that involves going gluten free/dairy free etc Happy to do that again.
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
I have Jarrow B12 and separate folate which I take week leading up to blood test.
I’m taking 1000iu per day D3. I tried 3000iu better you spray but kept getting a headache every time I took it and funnily enough so did my husband. So, maybe will try a slow increase?
I'm tempted to say that if you could self source some Levo, which members do, it would be considerably cheaper than going private, especially if that is all a private doctor is likely to do.
It would be a different story if you were looking to try NDT or T3, which might be something to consider down the line. If you are a poor converter of Levo into the active T3 then you will have a high in range FT4 but low FT3. And a consistently high FT4 can have some adverse outcomes like raising the risk of some cancers and dementia.
Obviously with your TSH being over 2 you are under medicated, which is a no brainer, 50mcgs isnt anywhere enough for an adult, but if you increase Levo and still have poor conversion and symptoms then you could try adding some T3 in at some point.
I 100% agree with the whole going private thing. Its a real bugbear for many of us.
Thanks Sparklingsunshine. I’m not fully committed yet to going on the whole journey privately. However, I want to have this consultation to see what a different doctor has to say (especially as they are on the Thyroid UK list). It all depends on how this consultation goes on Tuesday. I really need a few more blood tests which show T3 to see how well I’m converting. Tried to insist with the GP that I wanted to have my T3 tested as well. I argued with him about his comment about my FT4 being high enough that how can he see the full picture without T3 results? How do you know I am converting well from T4? He said you can’t accurately test T3 because it fluctuates throughout the day so it’s pointless. And he’ll only increase Levo if I’m gaining weight even if I am eating healthy and doing exercise! So, after listening to that load of codswallop, I was done with him and the surgery when it comes to my thyroid.
I also want to discuss the NDT option on Tuesday as well. But sourcing my own Levo is something I will think about. Although have no idea how I go about that?
I also want to discuss the NDT option on Tuesday as well.
Far too early to be considered adding T3 or NDT until done at least 3-6 months on full replacement dose Levo and optimal vitamins
Don’t be in a rush to go to alternatives, especially NDT as it’s extremely expensive long term commitment
Many people do well when on CORRECT dose Levo and maintaining GOOD vitamin levels
If your Ft3 remains low at this point, in say 6-12 months then looking at getting T3 prescribed alongside levothyroxine is far cheaper and you may even get T3 on NHS eventually
I definitely want to have a chance to give Levo a good try first. But I want to find out more about NDT for future possibilities. And I’ll also ask about T3 again for future note. But I really do hope the Levo works for me.
Obviously you need to give a good dose of Levo a fair chance first. Its obviously desirable if you are well on Levo only. Its extremely cheap and easy to source. Ideally we'd all be ok on it.
Unfortunately no matter how much I took, I was taking 200mcgs a day at one point, I ended up with a top of the range FT4 and a middling T3. So after 3.5 years on Levo only I decided to add some T3. But I self source, which is cheaper than going via an Endo, not as cheap as getting it on the NHS. I'm also at the mercy of global supply issues. Its not ideal at all.
I feel your pain as during covid I was diagnosed as hypo and then " parked" on 50mcg of Levo for far too long. If I was a small child then it was ok. As a grown woman? Not so much. Stupjd TSH obsessed doctors are the bane of our lives.
You could put up a new post asking for sources of Levo, we aren't allowed to mention them on the forum, but people can message you privately with suggestions 😊
Well it was only 2 weeks ago but yes, they wrote to my GP who STILL refused to increase my dose, so I've had a private prescription for 100mcg levo. I hope that my bloods in 8 weeks will show I'm not over medicated and I can persuade GP to then prescribe
Yes I tried to increase to 75mcgs because I had some extra tablets when I finally got back on TEVA. But now I don’t have enough and as I have said doctor won’t increase from 50mcgs. I did initially feel better on TEVA yes. But obviously because I’m under medicated I am generally feeling unwell.
Please see response above to previous comment. I am not lactose free/dairy free although I don’t eat/drink a lot of dairy.
Even if we frequently start on only 50mcg, 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
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
.... You only need enough to top up what the Thyroid does not produce.
yes, but the HPT axis is a dynamic system , so you need to keep an eye on the body's response to the dose given initially ... it's not as simple as 'you're missing 25mcg so we'll give you 25mcg ,problem solved'.
~ Higher TSH (when thyroid is failing and T4 falling) stimulates thyroid to produce increased ratio of T3:T4 and also increases conversion of T4 to T3. Thus , before they are taking any Levo , hypothyroid patients will often have relatively good fT3 levels and relatively low T4 levels .
~ Patient is then given some levo (eg. 50 mcg) and fT4 initially rises (the total of thyroidal production + 50mcg levo) .
~ TSH reduces appropriately (in response to initial T4 level increase)
~ Thyroidal production of T4 then reduces (in response to lower TSH) .
(and ratio of T3:T4 produced by thyroid reduces , and conversion of T4 to T3 reduces ~also in response to lower TSH).
~ After a few weeks / months on 50mcg, the thyroidal production of T4 will therefore be less than it was before levo was added.. (and the thyroidal production of T3 will be less , and the peripheral conversion of T4 toT3 will be less)..... leading to the potential for a patient to ultimately feel more hypo once established on 50mcg Levo than they did before they took any ... the T3 level is important to consider here as it's the active hormone ... and the amount of TSH reduction in response to a given dose of levo is also highly individual..... So there is A LOT going on when you 'just add a bit of T4'.
~ If 50mcg dose is/ or becomes insufficient , TSH begins to rise ,and symptoms return (in response to the now relatively lower T3 levels, and the still inadequate fT4 levels).
So dose increases are going to be needed until a state of equilibrium is reached between TSH and fT4 and fT3 levels.. and until symptoms resolve and stay resolved.
If a balance can be found with a dose that still allows enough TSH to stimulate the thyroid to try and produce a meaningful amount of T4/ T3 ,then all well and good .. in those individuals a lower than 'full replacement dose' may be enough for them , at least for a while .. possibly forever.
But a TSH over 2 ish on levo is a pretty good indication that a higher dose may be needed ... numerous recommendations advise GP's to keep TSH lower than that in all patients on Levo... see this link:
It also depends on the state of the thyroid ... further damage will usually occur over time in autoimmune patients , thus altering how much T4/T3 the damaged thyroid is capable of producing in response to a given amount of TSH.
and we need to bear in mind that it's impossible to replicate the TSH : T4 :T3 levels that a functioning thyroid gland would originally have provide us with, because once we are using Levothyroxine , this usually results in a relatively higher T4 : relatively lower TSH : relatively lower T3 ...... healthunlocked.com/thyroidu....
.... so the dose of levo should be adjusted carefully by interpreting TSH and T4 / T3 and symptom response ... not just TSH .
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T3 and hypo symptoms 
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Symptoms returning
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