Hi, I've stopped taking T3, it's a long story but I saw an ENT for a different issue but instead he was more concerned about my low TSH and questioned if I should be taking T3 or any thyroid medication at all! He totally caught me off my guard and didn't think I had hypothyroidism based on my records and raised it as a problem with my GP. As I see a private endocrinologist and have private prescription for T3, he didn't have access to all my records but that just made him ask why I wasn't under the NHS so I had to try and fight my corner and summarise my situation, possibility of central hypothyroidism with low TSH, low Free T4 and low Free T3 and that I reached the stage where I thought my medication was nearing optimal levels (25mg T3 / 75mg T4), that taking T3 supressed TSH etc,
But it fell on deaf ears and I feel like I'm back at the start of my journey again. To be honest I had been getting worried about continuing to take T3 with the increasing cost of the private prescription and endocrinologist, and the added problem now of getting supplies of T3 following Brexit. And after this issue there is no chance that my GP will prescribe T3 for me in the future. So I thought it was time to take back some control and see whether I actually needed to take T3. I wondered about stopping taking T4 too as so many specialists have now questioned whether I have a thyroid problem, as maybe it's just normal for me to have low levels?
I started to decrease my T3 dose early November and stopped entirely 1 December but I've continued to take 75mg T4. I haven't felt as bad as I thought I would, but the constipation started pretty quickly, along with about half a stone weight gain, freezing cold hands and feet, pins & needles and lots more tired than usual. I had a blood test just before I made the change in November (and was taking 25mg T3 & 75mg T4, test at 7.30am, fasting with last dose of T3 about 12 hours beforehand), the results are below.
5 November 2020:
TSH - 0.01 (0.27-4.2)
Free T3 - 4.53 (3.1-6.8)
Free T4 - 12 (12-22)
I had another blood test this week and the results are attached. I guess I didn't expect my TSH to increase so quickly or my Free T3 to reduce so much, as my next step was to ask my GP to increase my T4 dose to 100mg? I would really appreciate some advise on this as feel like I've lost my way and questioning whether I've got thyroid problems and should just stop taking the medication. Thanks as always for your help!
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I don't think you should have stopped or reduced your medication if you were feeling well. Is there anyway you can start taking it again? The TSH is a pituitary gland hormone and it will be low if you are taking T3 and it is the T4 and T3 that counts. I am sure you know that a lot doctors go by the TSH and I don't know why you listened to this doctor because he will keep you ill.
Hi Lora7again , I was feeling better but to be honest I’ve not felt like myself for a while. I guess I’m just feeling defeated and questioning everything as it’s only the private Endo that thinks I have a thyroid problem and I wonder if it’s just because I’ve been seeing him privately? To be honest I don’t know if I can afford to keep paying to see the Endo and pay for T3, especially now if usual sources not available. My GP has never been 100% happy prescribing T4 as I’m not typically hypothyroid, and other specialists have questioned whether low levels just normal for me and suggesting that I stop thyroid medication, so recent specialist saying this too doesn’t help my case. So I feel like I’m walking a tightrope all the time with others controlling my well-being but I guess maybe that’s just what I need to do. Sorry that’s my moaning over for now!
Your levels look too low now you have stopped T3 and you are starting to get signs of being under medicated in my opinion. I just hope you don't get any worse because of this. I don't involve any doctors in my thyroid health because they just go by the TSH. You can read my story on my profile page if you are interested.
I’ll take a look Lora7again , thanks. I guess what I’m looking for is whether I have a thyroid problem or maybe I just naturally low levels? But it’s so hard to find out what’s ‘normal’ as so few people have thyroid blood tests when they felt well, I know I didn’t!
My husband's TSH is 0.97 and my son in-laws TSH is 1.05 and they both don't have thyroid disease. I looked back at my TSH before I had this disease I think it was 0.98. Of course I never had the T4 or T3 tested then because I felt well.
Hidden but in his letter to my GP he wrote all about the perils of a low TSH especially if taking unnecessary thyroid medications, and by the way the scope showed silent reflux, and that was it!
Looking at your results currently only, you are under range in both T3 and t4. That should be enough to get a doc to give you an increase in meds. Then retest in six weeks and ask for another incrrease until you are high in the range or feel well. If you can do that on just t4 - and most can - that won't be bad as it's cheaper than T3 if you do have to continue to self medicate.
There are other cheaper ways to source T3Well done for getting the bloods done both times. I had a gp advise I stop my thyroid medication while I was pregnant because of a suppressed TSH. I choose never to see that dr again.
November (and was taking 25mg T3 & 75mg T4, test at 7.30am, fasting with last dose of T3 about 12 hours beforehand), the results are below.
5 November 2020:
TSH - 0.01 (0.27-4.2)
Free T3 - 4.53 (3.1-6.8)
Free T4 - 12 (12-22)
Assuming test was done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test and that 1/4 tablet T3 8-12 hours before test
These November results showed under medicated and in need of 25mcg dose increase in levothyroxine
Acid reflux is common hypothyroid symptom due to low stomach acid
Are you on strictly gluten free diet
Obviously results now are far far worse
High TG antibodies confirms autoimmune thyroid disease
Hi SlowDragon , I appreciate you taking the time to respond, this is really useful info. I use the BetterYou VitB12 and Vit D sprays and take the Igennus Super B Complex. I've also started taking an apple cider vinegar with the mother gummy which I read helps with low stomach acid. The GP wanted me to take Omeprazole for silent reflux but I've resisted that so far as the symptoms have calmed down recently which is great.
I tried gluten free for 3 months, it didn't make much difference but highlighed a few intolerances to pasta and some breads which was interesting.
My GP thinks that only raised TPO antibodies signify Hashimoto's and that raised TgAb not related to thyroid problems, but mine aren't raised enough to be a significant issue. Although the private Endo does recognise that raised TgAb is likely due to Hashimoto's.
Contact GP with these results and insist on 25mcg dose increase in levothyroxine
Do you always get same brand of levothyroxine
Do you take levothyroxine dose waking or bedtime?
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, 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.
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.
Oh hun 😞 I just replied to your other post (dated 2mths ago) where I said you were still very much hypothyroid and now it breaks my heart to see that you are treated in this position and severally hypo now. Start increasing your Levo immediately and untill you get the FT4 up nearer the top end of the range. Keep getting the full blood tests so that at each step of true way you can monitor your conversion to FT3. I very much think you should be sourcing T3 again but hold off on introducing it till you can get an accurate picture of your levels and conversion.
Please please ignore any professionals who keep banging on about TSH. Just smile and politely ignore! Just for reference, I am a poor convertor but my results were always usually in ranger but FT3 almost always 0% through range no matter how high my FT4 was. I added T3 to my Levo and feel ‘normal’ now as if I don’t have a thyroid condition at all. My TSH is always 0.002. I think if any professional tried to tell me I was hyper I’d laugh in their face as it’s so farcical.
I agree with what you have just posted and I only realised this morning I had replied to her previous thread. I should have checked on her profile to see her previous threads like I usually do 🙁
Hi NWA6 thanks for your message. Good to hear from folks that are feeling normal again. I think I’ve just ran out of stream if I’m honest, find it hard to believe that have to put up such a fight just to keep well, when really all it takes is just a bit of kindness and consideration sometimes, especially with all that’s going in the world at the moment. I’ve got 3 young kids and just want to be well to look after them, and be able to work, I try to keep very fit & active, don’t drink or smoke and eat well, so feel like I try my best but I guess I just need to toughen up a bit more. I started off putting up a good fight but the more I was questioned about whether I actually had a thyroid problem, the more I doubted myself, then the idea of not being able to afford and/or source T3 in the future has been worrying me too. But I’m going to contact GP with my new results and explain how my situation has deteriorated since stopping T3 and ask for at increase to Levo and for them to reconsider prescribing T3, what do I have to lose?!
Getting dose levothyroxine slowly increased upwards first step
Also make sure all four vitamins remain OPTIMAL....
Likely to need at least another dose increase in levothyroxine after this one
It’s easier to run high dose levothyroxine......but if Ft3 remains low, you’ll need T3 prescribed alongside 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 at
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
If you end up back on T3, then TSH is almost always suppressed.....it’s irrelevant as long as you feel ok, no hyperthyroid symptoms and Ft3 is not over top of range
Many people on levothyroxine plus T3 need both Ft4 and Ft3 roughly 60-70% through range minimum
Oh hun, I can just hear how hard this is for you and it brings me memories of my own hypo life. I had 4 children within 5yrs. It was incredibly hard. I sometimes took the baby to bed at 6pm, locked the stair gate and prayed that the other 3 (2,4 and 5yrs) would be ok till hubby got home at 6.30pm. I just couldn’t keep my eyes open! I finally got on Levo when baby was 1yr old. The next 10yrs was a struggle but never as bad as before Levo but still a rollercoaster of hypo, normal, hyperish.
Finally I got T3 nearly 2yrs ago and I have been so stable.
I hear you! I really hear you! The doubts, the fears, the guilt, that was my life too. I don’t know if you can take this in at the moment but my children are 13/15/17/19 now and they say they had a good childhood and I need to stop looking back and wishing I was a better less tired parent. They say they’ve always felt loved. I am sure that yours will think that too when they’re grown. Just hold on for now, if it’s too much telly or screens then loose the guilt and let it be what it is. You will get well.
Try not to focus on too many things at once. Take things in stages.
Levo first. That’s all you need to sort atm. Come back for support at each stage and you’ll get to where you need to be 🤗
here is a letter I wrote for someone else regarding a similar matter. you may need to change some details to suit your own case.
Your Address line 1
Your Address line 2
Your Address line 3
Your Post Code
Dr. name here
Surgery name
Address line 1
Address line 2
Address line 3
Dr.s Post Code
Dear Doctor (insert Dr’s name here)
Refusal to prescribe liothyronine (T3)
British Thyroid Association Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015
PrescQIPP Bulletin 121 Recommendations 2016
BTA Prescription of Liothyronine in Primary Care 2017
NHS England Items which should not routinely be prescribed in primary care: Guidance for CCGs 2017
Health Act 2
Regional Medicines Optimisation Committee (RMOC) June 2019
I write following my consultation with you on (insert date here ??/??/????) during which you informed me that you could no longer prescribe T3. You told me that the reason was the Clinical Commissioning Group/Health Trust had banned prescription of T3. I believe that this decision is irrational and unlawful and therefore I request that you continue my prescription of T3. I have a clinical need, guidance on prescribing liothyronine allows for a clinical need and several judicial reviews have declared blanket bans to be unlawful.
I have a clinical need for liothyronine.
I have seen (insert doctor’s/Endocrinologist’s name here) at (insert surgery’s/hospital’s name here) who has recognised my need for T3 and has advised that I am prescribed T3 because my health did not improve on T4 alone.
(You may include additional information about how you did not thrive on T4 mono monotherapy)
Since taking T3, my signs and symptoms have resolved or partially resolved. (amend the points below as necessary)
• My “brain fog” has cleared
• My face is less puffy
• I feel less fatigued
• I feel less irritable
• I am able to exercise more regularly
• My blood pressure has gone down
• My pulse rate has increased
• I am able to work better
• My relationships with my friends and family have improved
(amend remove or add any other health improvements you have since taking T3).
I have demonstrated that I have a clinical need for T3 that was not met by T4 monotherapy. My health will deteriorate if I do not take T3.
Banning liothyronine is irrational
I have attached the documents detailed above to show that they accept that there is a cohort of patients who do not thrive on thyroxine alone. All of them allow for an exception where the clinical need is clear.
In summary;
• The BTA is a group of expert Endocrinologists who recognise the need for some patients to take liothyronine in their Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015. I attach a copy with relevant passages highlighted on pages 6 and 10 .
• PrescQipp is a group of pharmacists tasked with reducing the cost of medicines to the NHS who have also recommended that some patients will need liothyronine in their Bulletin 121. I attach a copy with relevant passages highlighted on pages 1 and 4.
• The BTA became aware that their guidance was used to promote a ban on liothyronine and issued direct guidance asserting that some patients clinically need liothyronine I attach a copy with relevant passages highlighted on pages 1 and 2.
• NHS England recommends that CCGs must make provisions for the prescription of liothyronine. I attach a copy with the relevant passages highlighted on page 8, 19 and 20.
• The RMOC guidance also allows for the prescription of Liothyronine where is it is clinically necessary
The documents clearly show that despite a drive to reduce the numbers of prescriptions of liothyronine, some patients will still have a need for it to be prescribed to them. To completely ban liothyronine is clearly irrational in the face of those recognised exceptions in the guidance and recommendations above and particularly when a blanket ban is contrary to the advice from NHS England.
Blanket bans are unlawful
Clinical Commissioning Groups have a legal duty to have regard to the NHS Constitution. The 2019 Handbook to the NHS Constitution says:
If a CCG, a local authority or NHS England has decided that a treatment will not normally be funded, it needs to be able to consider whether to fund that treatment for an individual patient on an exceptional basis…In addition, decisions by the courts have made it clear that, although an NHS commissioner …can have a policy not to fund a particular treatment (unless recommended in a NICE technology appraisal recommendation or highly specialised technology recommendation), it cannot have a blanket policy; i.e. it must consider exceptional individual cases where funding should be provided.
By instituting a blanket ban and not considering exceptional individual cases, (insert your CCG here) has not had regard to the NHS Constitution and wold have realised that a blanket ban is unlawful.
The courts are clear that blanket ban of drugs are unlawful. The courts have said that even if a drug is to be restricted on the NHS provisions must be made for clinical exceptions.
The cases stated are:
• R (Elizabeth Rose) v Thanet Clinical Commissioning Group (2014). CCGs should not deviate from guidance just because they don’t like it.
• Regina v Secretary of State for Health ex parte Pfizer: 51 BLMR 189 1999 Guidance should not take the place of a doctor’s (and now patients following Montgomery v Lanarkshire Health Board 2015 and Consent: doctors and patients making decisions together) judgement
• R v Cambridge Health Authority, ex p B [1995] 2 All ER 129, [1995] 1 WLR 898 Authorities must take ALL factors into account when limiting access to treatment. The decision should not be "so absurd or outrageous in their defiance of logic or morality that no reasonable person addressing the question would have come to the same conclusion".
• R. v North West Lancashire Health Authority, ex parte A, D and G [1999] All E.R. (D) 911 Authorities must not establish a blanket ban and must take into account patients individual circumstances
• R v Swindon NHS Primary Care Trust, Secretary of State for Health, ex parte Rogers [2006] EWCA. Civ 392 The concept of exceptionality cannot be too narrow to the extent that no case would be exceptional.
• R. v Barking & Dagenham NHS PCT, ex parte Otley [2007] EWHC 1927 and R. v West Sussex Primary Care Trust, ex parte Ross [2008] EWHC B15, Health Authorities must include divergent expert opinions when considering scientific evidence
• R. v Salford Primary Care Trust, ex parte Murphy [2008] EWHC 1908, Authorities must evaluate exceptionality holistically
Conclusion
I have demonstrated that I have a clinical need for liothyronine, that banning liothyronine is contrary to guidance and recommendations and that a blanket ban is unlawful. I respectfully request that you restart/initiate my treatment. I am afraid to say that if you do not, I will have no alternative but to make a formal complaint regarding your decision.
Thank you holyshedballs , that’s a powerful letter, will take the time to read it properly and look at the info referred to. I’ve initiated an e-Consult with my GP so have the ball rolling now, just need to get ready with my information now, thanks to all for their help, much appreciated 😀
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