I have posted on this site since having a TT in June 2016 after a thyroid storm. You have always been very helpful, I am once again asking for help!!
I was put on 100mcg of Levothyroxine on leaving hospital and have been reduced over this time and I now take 50mcg three days a week and 75mcg four days a week. I feel awful most of the time. Tired, lethargic, body aches, sleep a lot, weight gain, puffy face, hair thinning, most days struggle to do normal things. Even having a shower shatters me. I have a good relationship with my doctor and she will listen to me. However, her hands are tied as my results warrant a reduction in medication, I try to work with her and do as she says but I still feel awful. I have persuaded her to refer me back to the Endo (the one I had in hospital is no longer there, mores the pity as he was very good, and I believe saved my life as he recognised the symptoms of thyroid storm!). I have not seen an Endo since being discharged (approx 2.5 years ago). I just feel he may be able to answer my questions about why I still feel like c..p, and why with such a small dose of Levo my T4 is still over the upper limit! I am prepared to pay for T3 for a trial to see if this makes a difference, but as my T3 is in range I don’t think I will have much joy there! My results for the last 18 months are:
Ranges as Jan 2018. Reduced to 75mcg weekdays 50mcg weekends.
9 Jan 2019 Taking 75mcg weekdays 50mcg weekend
TSH. 0.98min/L
T4. 22.5pmol/L
T3. 3.6pmol/L
Ranges as Jan 2018. No reduction
9 April 2019
TSH. 1.3min/L
T4. 24.6pmol/L
T3. 3.9pmol/L
Ranges as Jan 2018. Reduced meds to 75mcg 4 days a week 50mcg 3 days a week.
This is what I am taking at the moment. I have all my blood test before 9.00am fasting and do not take my Levo until after the test. I take my Levo at night as I tolerate it better.
If any of you very knowledgeable people could shed some light on these results I would much appreciate it. Personally I think I may have a conversion problem, but as the results of all T3 tests are in range (just) I don’t hold out much hope of the Endo agreeing with me. Could that explain why I feel so awful? Also I don’t understand why my T4 stays so high on the small amount of Levo I take especially with no thyroid??
Sorry about the length of the post!
Thank you in anticipation.....
Written by
Foxie1234
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Get them to check your B12, Vit D, folate and ferritin for a start. Second your T3 is low, should be nearer the high end so you are not converting well, by the look of it. It may be that the above tests show you are deficient which means you don't convert well. More knowledgeable people will give you better advice but I would start there.
With a high FT4 and a lower FT3 chances are you aren't converting efficiently. I reversed mine by getting Vit D, B12, folate and ferritin tested but these must be optimal, not just in range-see SeasideSusie's posts for more info on doing that. It can take time to address this but well worth the effort. A few may need to add in a little T3 but best to work on reversing it first as if you are having to source your own T3 then it can be expensive. These 4 when optimal can help with conversion issues, rid you of some issues you may be having and also improve your general health though be aware it can take time especially if several are very low.
I was told when I started out that I must take zinc alongside selenium but wasn't told why other than to balance it. Best to get levels optimal with vits etc as some can't progress with adding in T3 unless that is sorted
You do need those vitamins and minerals tested as suggested and your T3 could be higher in range. You might want to find out if the endo you are going to see prescribes T3 and if not have a look at the list of more helpful doctors/ endos on the list available via TUK website. I would phone ahead of time and ask the endos secretary if the endo prescribes T3 if not I would advise not to attend because unlikely to be helpful and might write a report tying your GPs hands even further.
Change your doctor and I hope you get a better one.This doctor isn't treating 'you' but the numbers on the TSH results and many believe if TSH is very low that we're now becoming hyPERthytroid. You have had a TT so don't have a thyroid gland at all and need an optimum dose of levothyroxine and if you aren't converting it to sufficient T3, the very basic you should be prescribed is a T4/T3 combination.
I have my thyroid gland - I could not feel any better on levothyroxine than before I diagnosed myself (by that time TSH was 100). I take T3 alone. This may be helpful.
A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your
physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the
blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.
Why not self medicate with NDT or add a little T3 your FT3 is too low and your TSH is too high for someone without a thyroid.
I had my TT in Oct 2015 and was kept on Levo and felt really ill. It has taken me nearly two years to sort myself out but I fell well on 2 grains per day of thyroid s. NDT.
That does seem a tiny amount considering you have no thyroid . Your symptoms suggest you’re still massively under medicated and perhaps not converting . I agree with others that a small amount of T3 could help and explore the possibility maybe of NDT ?
I don’t have a thyroid either and switched to it as it’s most similar to what your natural thyroid would produce if you had one ..
As your dose has been reduced, al, that happens is FT3 drops. Your FT3 has never been high enough. We need FT3 at least over 5.5... ccmany need it right at top of range
You almost certainly have significant issues with conversion
Vitamin levels look ok
Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3
please email Dionne at
tukadmin@thyroiduk.org
Roughly where in the UK are you?
Recent research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine
Just as a point of reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 +10 T3.
Personally I just think it's logical that if you have had a medical intervention and your thyroid either ablated or surgically removed both these vital hormones should be on the prescription, for if and when.
Some people get by of T4 - Levothyroxine alone, some people at some point in time simply stop converting the T4 to T3 and some people simple need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.
It is essential that you are monitored on T3 and T4 blood tests and not a TSH blood test.
The TSH is a diagnostic tool for hypothyroidism, and not a measure of anything of any value once on thyroid hormone replacement and especially since you do not have a thyroid to stimulate.
Living without a thyroid can be challenging especially if only on T4 as you will have been down regulated by about 20% of your daily need of T3. and therefore should need a higher proportion of T4 to compensate.
It looks as though you are on a relatively low dose of T4 but showing over range readings and struggling to convert the T4 into T3.
A ratio / balance of 1 / 3..5 to 4 seems to suit most people, and you are coming in over 6. You just divide your T3 into your T4 for the ratio. I think the NHS consider below 5 ok.
So, your T4 conversion is low which ultimately impacts on your low T3 and the spareT4 that you're not using, will ultimately becomes reverse T3 which maybe a reason why your conversion is low. This is a guess - I'm still with " L " plates in some areas in all this.
A referral to endocrinology might get you a trial of T3 ?
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being so if not optimally medicated you may have many signs and symptoms pulling you down.
Your Thyroid and How To Keep It Healthy by Dr Barry Durrant - Peatfield is a very good easy read about all things thyroid, written by a doctor who has hypothyroidism. We may not now have a thyroid to keep healthy but in my experience we need to work twice as hard to compensate for it's loss.
Do you have Graves Disease :-
Elaine Moore - Graves Disease A Practical Guide -this lady has the disease and wrote a book to help others as she found no help dealing with the aftermath from her treatment. She now runs a very well respected researched website, open to all Graves patients with open forums much like this invaluable platform.
Barbara S Lougheed - Tired Thyroid - there is also a " blog " . Another American lady who has the disease and amongst other things debunks the TSH read as having any value in Graves patients as we can have TSI antibodies sitting on our TSH giving false reads that mean diddly squat.
It's a massive learning curve and if with armed with the knowledge but the NHs won't play ball you'll be confident enough to self medicate with either a little T3 or NDT.
I am with Graves post RAI 2005 and now self medicating with Natural Desiccated Thyroid and feeling so much better, I'm on a learning curve as we all are but much improved and getting my life back.
What formulation of levothyroine are you taking and have you tried a different variety? Are you taking any other medication, including vitamins, besides thyroid hormone?
I have been taking the same brand since I had my TT. When I went on 75mcg they tried to give me Teva but didn’t suit so back on original brands. 50mcg is ALMUS & 25mcg is Mercury.
I take 20mg Propranolol in the morning 10mg in the evening, cetirizine 10mg each day, 1 x 20mg Rivaroxaban each day, 10mg Amitriptyline in the evening. I take 1 x capsule of Acidophilus Complex for my gut health, 1 Selenium 200mcg tablet, 1 Vitamin C 500 with Zinc and 1 Vit B complex. In the winter I take 25mcg (1000iu) vit D3. I take my Levo before I go to bed around 11 ish.
The propranolol goes up and down depending on my palpitations. I try to take as little as possible. I have taken ferrous fumerate when I have needed to.
Do you think I may need more/different vitamins or supplements?
Foxie1234, I don't know much about it, though others on the site are very knowledgeable, I believe propranolol is one of those medications that can interfere with thyroid hormone.
Are you taking it for palpitations you've had since the TT? Or have you been taking it since before the operation?
Hi there thanks for reply. I need propranolol, if I don’t take them I get bad palpitations....I have AF a throw back from the thyroid storm. I was on 40mg 3 x day so have considerably reduced them. I tried to reduce the morning dose, but palpitations come back. I take them well away from my Levo. I have asked if there is anything else, but, my dr believes these are the best for me (I have faith in my dr, she has been very good through all my trials and tribulations and would not want to change. She is very easy to discuss things with and usually listens to me! which is a bonus! She was the registrar at the hospital when I had my thyroid storm and so saw me at my worse, she is now at my surgery, so I feel that is a bonus!).
Have you had a full assessment for atrial fibrillation from a specialist in cardiology? If not then ask for a referral. You need to be sure you need Propranolol if you're going to continue taking it.
Don't put your faith in any medical professional, rather gather the evidence, blood test and other test results and make informed decisions based on facts.
I have seen the Cardiologist. I was under one in hospital and have seen him in clinics.....he was the one that put me on the anticoagulant. He advised me to split the dose am & pm. I am taking less than he wanted me too.
He was the one that prescribed propranolol.....why would I need a review of my anticoagulant? Are you suggesting this interferes with conversation as well? I am high risk for stroke so I am not coming off my Rivaroxaban.
I have a friend who is taking Levo (she does have her thyroid gland) and she takes prednisolone in quite high quantities as she has PMR and she has no problems with conversion. She also thinks I am stupid to follow all the advise like taking Levo 1 hour before eating, taking other meds away from Levo, not taking dose before blood test....she completely ignors all this and doesn’t have the feelings I get.... I know we are all different but it doesn’t seem fair. I do take advise from this web site as I believe your knowledge is good. My go told me to look at this site, so she must rate it.
I was feeling ok ish (more good days than bad) now it is more bad days than good.....the only change being the lower dose of Levo! I have always taken the other meds and in bigger doses to sometimes.
If there is a problem with propranolol interfering with conversion, why has my dr not mentioned it, I have mentioned conversion to her and that is why she is referring me to the Endo for some answers. I will as him about the propranolol.
The study is the first to demonstrate that IOP inhibits cutaneous cell proliferation and that supplemental T(3) is sufficient to correct at least part of the inhibition caused by IOP. The data suggest that IOP decreases cutaneous cell proliferation by inhibition of intracellular T(4) to T(3) conversion. The data provide indirect evidence of the presence of type 1 or type 2 iodothyronine deiodinase activity in skin cells. The data support our previous hypothesis that T(3) is necessary for normal cutaneous proliferation."
And why didn't your doctor tell you about this? The above articles were published in 2010 and 2009. When did your doctor graduate medical school? How far behind published research are most medical school curricula?
Thanks for the info.....I will speak to my dr the next time I go....maybe it’s as easy as stopping the propranolol to make me feel better! Hope there is something else to take for the palpitations!
I'm not suggesting you stop taking medication that has been prescribed by specialists. However, they do have side effects and its possible your symptoms are related to side effects rather than to your thyroid function.
There are sometimes alternative versions of medicines that cause fewer side effects that's why I suggest you could ask for a review.
Thanks for that. I was on warfarin but much prefer Rivaroxaban as I don't have to have blood tests (I have enough of them already). I will speak to my gp....
Thank you for all your replies. Enjoy the Bank Holiday! 🏖
Lots of us end up on drugs we don't actually need because it's easier for doctors to give drugs than counsel a patient on how to manage symptoms or investigate deficiencies such as vitamin D deficiency and offer advice.
Find out whether your palpitations are actually life threatening or bad for your health or your heart. Lots of people get palpitations for various reasons which are uncomfortable but not actually threatening to their health. Therefore it is worth getting the facts on your palpitations and whether there are firm medical reasons for taking Propranolol.
Foxie1234, as I read through your whole history of blood tests I was thinking that it looks like something is artificially inflating your freeT4 result. Just a bit of a hunch. Then I got to the note at the end where you say you take your hormone at night and follow the instructions for blood tests.
Does this mean when you have a blood test the gap between Levo is only 12 hours? Ideally it should be 24hrs, which means taking the Levo the morning before, then having the test fasting. This is a nuisance for people who take their tablets at night, which is otherwise a good thing to do. I'm not sure what people in your position tend to do. Maybe just take the days dose in the morning, which means you'll take a dose one day in the evening, next day in the morning, then the following day have the blood test.
This may have made a big impact on your blood test, and meant you've had dose reductions you shouldn't have had.
Overall it does look like your freeT4 is very high for the dose you're on, and usually those of us who've had a TT need a fairly high dose, because of course we've got no thyroid function at all. But everyone is different, and although that is a little puzzle it's probably not too important.
The very important thing is that your freeT3 is absolutely scraping the bottom! T3 is the active hormone needed by every cell in our body, while T4 is the storage form. In order to use it our body needs to actively convert that T4 into T3. When we're ill often we aren't too good at doing that.
Your blood tests show you're absolutely abysmal at it, because your freeT4 is right at the top of the range or above, and your freeT3 is right at the bottom. Usually we don't expect such a big gap in where the two are, we hope to see freeT3 just a little behind freeT4. Most people will need freeT3 up in the top third of the range to feel well.
You are very much a candidate to add in some T3. In fact it's essential for you and you probably won't feel any better until you get some.
I agree with others to not get too taken in by doctors. Some can be very nice, but it's essential to double check all they do, because often they don't have the knowledge to help us. This GP has been good to get you the freeT3 test, but has been keeping you sick by not offering or suggesting that you need some T3. It's very hard to get this on the NHS at the moment, but very much worth asking for. Many of us have to buy our own from overseas.
Hopefully once you are optimally medicated on thyroid hormone you may be able to reduce your others medications. Thyroid hormone is required by every cell in the body, particularly the heart, and lots of things go wrong when we don't have it.
Thank you for you’re reply...when I am having a blood test I don’t take my Levo the night before, I take that dose after the test. I then take my next dose as normal that night...meaning I leave more than 24 hours. Maybe I am leaving too long, but this is how I have always done it.....my T4 has always been quite high, my T3 has never been above 4.3....
I had a battle to get T3 tested, but not with the dr, she asks for it every time, the path lab ignored the drs request until my husband got the telephone number of the lab and blasted them! I have to phone up every time to make sure they include T3 on the test, it is always requested by my gp (it beggars belief that they can disregard a doctors instructions). Having the T3 test is the only way to tell if I am converting well!
I have been taking propranolol since before my TT, as I had palpitations well before I had the thyroid storm. I was on 40mg 3x day so have reduced considerably. If I reduce down anymore I get palpitations back.
I am willing to pay for a trial of T3 if my Endo thinks I need it and will prescribe it! If it works I will then have an argument for them to give me it on NHS (hopefully). He may think a combination would suit me, who knows, my appointment is at the end of June so I just have to wait and see.
I will be taking my husband in with me as he is good at persuasion!!!
Aah, good to know that you leave a 24hr plus gap. Sometimes people argue that it should be very close to 24hrs and that the 36he gap you're leaving will invalidate the results as well. I think as long as you remember that the blood tests are always an approximation it doesn't matter too much.
For T3 it is what you need even if your Endo doesn't agree. Endos are often no better than GPs for this, and particularly it's rare for them to recommend us buying our own. If you don't get a good result from the Endo, you may have no choice but to educate yourself and get to the point where you're confident making your own judgement.
Make sure your husband is well prepped to understand what it means to have a conversion problem, and how it shows up in your blood tests, and bring printouts of all you've shared here. Be prepared for the Endo to say that everyone is a good converter, as this is something they often say. There's a very good video showing cartoon figures of a women asking the doctor all these difficult questions. I will see if I can find it for you. A friend who is also very good at persuasion had good success by just arguing back with the doctor, using logic to refute all their reasons not to prescribe.
This is the video, actually it's not as good as I remember, but there are a few useful gems! My friend told me she used this video a lot when persuading her doctor:
Ow wow this is what I was going through, it got to the point I wasn’t eating. four days ago I was bed ridden and today I’m eating up and moving around, still can’t drive or take to much stimulation but I’m getting there. This is what I researched. According to the research I read you are pooling t4 it’s not converting into t3 it’s converting into reverse t3 in an effort to eliminate the t4 pooling therefore you might not be getting t3 into the cells. By lowering my t4 medication and adding cytomel throughout the day I was able to feel better. I’m not close to being where I was but only 4 days ago i felt as if I was dying. I take 100 mcg synthroid and 10 mcg cytomel throughout the day.
Thanks for your reply...sorry you to are feeling grotty! I always go off my food when I feel like this.....I spend a lot of time in bed but my husband doesn’t like me to so I get up and just sit on the sofa instead! He says I should try doing something...I try to explain how I feel but unless you have a thyroid problem I don’t think there is any understanding.....I appreciate all the advise and support from everyone....at least you all understand! 😴
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