Good evening all. I need advice on what to do. I started taking t3 eight weeks ago . I was had so many symptoms I decided to see a private endocrinologist. Who prescribed t3 and reduced my t4 dose. I felt better for the first 5 weeks. Now my symptoms have returned with vengeance. I do not know if I need to take any supplements or if it is the dose ny dose that need to be twitched. My t4 was reduced from 125mg daily to 100/75 on alternate days in addition to 5mg t3 three times daily.
My symptoms are heat intolerance, muscle and joint pain, needing the toilet frequently, dry mouth and eyes, numbness in feet and finger, feeling hungry even after eating and weight loss, dry skin.
I forgot to mention I had a thyroidectomy in 2019. At the moment i inly take b12 .
My blood test results are:
Last does of t4 23 hrs before test and t3 was taken 8 hrs before test . Blood drawn at 9am before eating anything apart from water.
Free t3 4.3 range 2 4-6
Folic acid 6.9>2.7
B12 662 range 160-800ng/L
Free t4 10 5 range 9-23pmo/L
TSH 0 .02 range 0.3-4 2milliunit/L
Ferritin 36ug/L range 20-300ug/L
B12 662 range 160-180ng/L
Folate 6.9<2.7 free triodothyronine level 4.3pmol range 2.4-6.0
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cbraffe
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Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Looks like your Dr came up with some ratios arbitrarily and that...doesn't work. You can't rely on them to find the right ratio for you because 99% of them have no clue nor time to care. With those results you posted below, your FT4 wasn't even at the top of the range. If it were me I'd restart back at 125mcg of Levo and 5mcg of T3 and then up to 10mcg of T3 when you start to feel ready for an increase. I've been adjusting my T4/T3 and when I added 10mcg of T3 I had to increase my Levo from alternating 110/112mcg to 112mcg daily and I still feel it isn't enough. You may not be converting all that T4 to T3 but you still need sufficient levels of T4 in your body to feel normal.
Completely agree with this. We're all different, but those symptoms sound like over treatment to me which may be due to starting on too high a dose of T3 (even though your blood test results don't show high levels). The changes may have been too dramatic for your system to tolerate right away. I spent some months building up from 5mcg daily, to 10mcg and then 15mcg, and found the transition pretty smooth. Best of luck with finding the right balance for you cbraffe
I feel over meditated. I was hyper and currently have all the symptoms. I reduce t3 to 5 twice daily and increase t4 back to 100daily and also focus on supplements for ferritin and folate. This thyroid journey does not get any better
I think this is a good decision. But be sure to hold it for 8 weeks and test. The doctor lowered your T4 too much in one go.
I have had similar problems. But in my case my endo wanted me to lower my dose from 125 to 75 and I decided I wasn't going to lower it at all because I wasn't at the top of the range. However, in hindsight, that was a mistake too. I should have lowered to 100 I think.
Thank you. I started taking 100mg from yesterday. My Gp just called to tell me my dose is too high as my TSH is gone down, i reminded her that i do not have a thyroid and usulally go bu my symptoms rather than TSH as an indicator. She stated that my ferrotin is low but within range. It seems she is not aware of the link between low ferrit and folate to the effectiveness of the thyroid medication. She advised i buy over the counter iron . She even wanted to stop prescribing levo telling i could take t3 without adding levo. In the end i got my prescription
The state of thyroid treatment in the UK is dire. And none of them understand vitamins and minerals. It's a fight all the time. Your ferritin is terrible. I once listened to a trichologist from New York on the radio. He said he would have a steady stream of women through his doors suffering hair loss. Those most prone were the skinny models and actresses. They were eating so little that their ferritin was on the floor and their hall falling out. He said ferritin must be over 70 for good hair growth. So I have ignored GP's on that since and aimed for 80 myself. I struggle to get it there and keep it there, hypo's have poor digestion. But I keep on.
I would ask to go back on full dose of levo along side the t3. I don’t really know why he dropped your t4 dose to be honest, without seeing bloods before.
T3 I source privately and have called my GP. Luckily enough i have been given a telephone appointment for 10am today. I will ask 4 a prescription . My GP had not altered my prescription on the repeat yet so i have extra 25mg tablets for at least 2 months
I definitely will. I value the support from this forum more than what I get from my GP as it is lived experience and it always works. Yesterday i was feeling very low but the response i got has made me more determined to take control of my health. Thanks again
that’s ok no problem. I always find these forums and groups more productive. I have learnt a lot am now understand how it all works and how to read my bloods and make my own adjustments. My GP wanted to leave me on 50mcg of levo due to heart problems. But I was SO hypo and unwell. Now I am on 100mcg levo and 9.5mcg of t3
Just wanted to show support as I'm not on a T3/T4 combo but do think you likely need your T4 higher in the range.
However everywhere I researched when my ferritin came in at 22 - was that ferritin needs to be over 70 for any thyroid hormone replacement to work well.
It took me over a year to build up and I took supplements as well as eating liver twice a week and would suggest you start supplementing, and probably need to maintain supplements, as your diet currently not conducive to maintaining optimal vitamins and minerals.
I still need to supplement on a regular basis, though eat meat, if I'm to maintain my health as best I can which, for me, means having a ferritin at around 100 : folate at around 20 : B12 active 75 ++ ( serum B12 500++ ) and vitamin D at around 100 :
Well your ferritin is low and you are clearly very unwell, and your doctor, knowing your history, should run a full iron panel first to rule out anything else.
S/he may then prescribe but is not 'obliged " as you are technically ' in the range '.
Mind you the NHS iron tablets are harsh - at least they were for me, and I ended up buying my own and took a ' more gentle ' form of supplement - a iron bisglycinate.
Ferritin does take time to build but so worthwhile as my shakiness was due to low ferritin and once I tipped over around 50 I felt so much better in myself but continued to build and continued to feel stronger and with more stamina.
My ferritin was down at 22 and I was over 65 at the time and I believe automatically referred for an endoscopy and a colonoscopy - the most traumatic appointment of my life - though I had had both procedures years before prior to RAI thyroid ablation for Graves Disease without any problem.
I believe my issue was one of my whole digestive track having been damaged from the Radio Active Iodine I ingested as I had no saliva and presumably no mucous membrane as detailed on my profile but no mainstream medic would confirm or deny anything.
P.S. Follow SDragon's advice - it's where I started !!
oh dear, That sounds horrid. I had both procedures in the past as the doctor was focused on exploring internally . So much time was wasted. My i have a history of iron deficiency due not my diet. I hope i do not have to go through that again i always buy the gentle iron and have some but will wait for gp to give a go ahead to start supplementing.
Do you recommend i ask for a prescription or just from the chemist?
I'm assuming you are referring to iron supplements. You would find it easier to buy them from a chemist than getting a doctor to prescribe for more than a month or two.
There are many different forms of iron supplement. I wrote about them in this reply to another member:
Thank you so much. I will look into that. What i wanted is for her to tell me if i need to start taking them. Her response was you are the low side but not low enough to warrant a,prescription
Ferritin 36ug/L range 20-300ug/L 5.7% through the range
Her response was you are the low side but not low enough to warrant a,prescription
Your doctor probably said that because your ferritin is in range. However the NICE guidelines say that iron deficiency occurs with a ferritin level below 30 mcg/L and yours is only a smidgen above that. And people with thyroid disease need good levels of ferritin to feel at their best. Good levels for ferritin are 50% - 70% through the range i.e approx 160 - 216 with the range you've given.
See this link, and read the section on "Interpreting ferritin levels" from the Clinical Knowledge Summary:
Even if you managed to persuade your doctor to prescribe she would most likely only prescribe for 2 - 3 months.
It is possible to overdo iron supplementing, and at high levels it is dangerous. This is why people with haemochromatosis have to go through regular phlebotomy / venesection to reduce their blood levels of iron. But avoiding that is just a case of testing an iron panel to check serum iron and ferritin and some other iron-related levels.
There are other problems with supplementing iron just on the basis of a ferritin result - see this link:
Your symptoms sound very much like you are over medicated. You could try reducing your T3 to twice a day 5mcg 8hrs apart. If I go over medicated I get symptoms you are describing.
Remember that your T3 blood results may not show the real level if you didn’t take your T3 prior to your blood draw. Although it’s currently showing ok once you take your T3 it’ll increase. Your TSH is showing over medicated. I’d have a couple of weeks trial of reducing your T3 to twice a day. You can always go back to 3 times if it doesn’t work for you. I don’t think you need to alter your T4 levothyroxine
I use to be on T3 x3 times a day it was too much for me I reduced to twice a day and felt so so much better I didn’t alter my T4 levo st the same time Do one medication at a time or you could get in a middle trying to understand which decrease or increase has helped Reduce T3 first for 2 weeks
The individuals on this platform are a blessing. I have started this morning to 5mg t3 with t4 100 will take the next dose in the evening. I was told that tsh does not matter as i do not have a thyroid, please is that true?
My private only endocrinologist explained to me that the TSH does matter. Thyroid or no thyroid. It indicates if you are over or under medicated along with the T4 and T3 levels results. If you do a blood draw and leave the time lapse as advised then as soon as you take your medication your T4 and T3 levels will normally increase. The TSH reflects what your T4 and T3 levels are doing over a period of time. If your T4 or T3 levels go above the top of the ranges then your TSH will suppress indicating to reduce either the T4 or T3 medications or even both. Opposite if your levels of T4 or T3 too low, your TSH will go high prompting you need more medication to keep your body functioning properly
Hope that makes sense Best figure to aim for is a TSH around 1.00 with T4 and T3 levels optimal for you individually A healthy persons TSH is often around 1.00 You don’t need to flood your body with levothyroxine or liothyronine to get best results in my experience, you need an adequate amount that suits you individually
If your T4 or T3 levels go above the top of the ranges then your TSH will suppress indicating to reduce either the T4 or T3 medications or even both.
What you've said is what doctors believe, but it simply isn't true for all patients. In some people TSH will go low while Free T4 and Free T3 are still well under optimal.
In my last test in July my Free T4 was 33% through the range and my Free T3 was 46% through the range. My TSH was only 0.02 (range 0.27 - 4.2) which would convince most doctors that I am over-medicated, but clearly I'm not with Free T4 and Free T3 both under mid-range.
It is this problem that makes me choose to treat my own thyroid. I don't discuss my thyroid with doctors at all.
Humanbean, you are such a fountain of knowledge. I have a question concerning TSH. As you say, doctors will take you off meds if the TSH goes "too low". Is there ever a situation where the TSH actually is too low? Or should the focus be strictly kept on where the free T4 and T3 values are within the range (regardless of TSH)? I ask because I was told numerous times (and found on pubmed) that hyperthyroid (as it is defined by TSH) leads to osteoporosis. Being postmenopausal and having been told that I am osteoporotic this is a big concern for me. Both my FT4 and T3 are not even close to top range but my TSH is 0.02. My confused head cannot think this through right now. I need a person who can be logical about this to help me out. Thanks.
Personally, I always go by my Free T4 and Free T3 rather than TSH. However I have a dodgy pituitary and it doesn't produce as much TSH as it should, and never has done.
But TSH does have more purposes than just prodding the thyroid and telling it what to do.
For that information your best best is to discuss this with jimh111
There is evidence that TSH also stimulates deiodinase, T4 to T3 conversion. I think this is a cruicial role because if TSH is low when fT3, fT4 are not high we will not get the extra T4 to T3 conversion we should. This will lead to low T3 levels in organs such as the brain which get most of their T3 from converting T4. It also means that if we just restore normal serum fT3 it still won't be enough for these tissues, we need higher fT3 levels which causes all sorts of confusion and potential problems.
TSH also has a role in bone formation although this seems to be quite minor.
What if I'm not a good converter to start with? And if the T3 is very low through the range even when the T4 is very high in the range and the TSH is normal? Then when T3 is added the TSH goes well below range, is there a danger of any kind, as far as you know?
Being postmenopausal and having been told that I am osteoporotic this is a big concern for me. Both my FT4 and T3 are not even close to top range but my TSH is 0.02.
I think almost every hypothyroid patient is threatened with osteoporosis at one time or another when they have low TSH.
But whenever I read that I think of my late mother who was diagnosed as hypothyroid in her 50s. She was put straight on to 75mcg Levo per day and her dose was never, ever changed. Her TSH was nearly 3 on the single time she found out what it was. And I think she was always under-dosed from the beginning until she died in her 80s.
During her last 30 years of life she developed extremely severe osteoporosis and rheumatoid arthritis. In her 70s she broke her wrist very severely as a result of a fall, and required a complicated surgery to put it back together. She also fractured her spine multiple times, and was given no treatment for it at all. (I still don't understand why spinal fractures aren't treated in people with osteoporosis. I really should investigate.) She also had severely crumbling hips that desperately needed replacement. But her bones were so weak that no replacement was possible because there was no secure anchor points for the new hips. She got put on an osteoporosis drug that caused necrosis of the jaw (along with excruciating pain, naturally) and all her teeth fell out.
Personally, I think that under-medication is much more dangerous in the long-term than mild over-medication.
I suspect that I will get osteoporosis at some point, if I don't have it already. But I think if I treat my own thyroid and treat my own nutrient levels I'll probably do a lot better than my mum.
I think I'm on your side with finding my own way. I was to be put on Prolia and had the audacity to call AmGen, the maker of the drug. The medical advisor was surprisingly thorough. After I gave all my values and answered a great number of questions, I was told that "AmGen would not recommend this drug" for me. This is the company that makes the stuff. You would expect them to want to sell it. If they say "no" my feeling would be that the doc is out to lunch.
do you miss your medication prior to your blood draw? If so, your levels would be higher if you took your medication prior to the blood draw. Have you ever checked if your levels are too high after you’ve taken your meds. I’ve done this a couple of times when my TSH went suppressed. I did take my meds and the level was too high, hence suppressed TSH. I then reduced my medication and felt much better once I was just within TSH range. My T4 and T3 are normally mid way through their ranges. My TSH a couple of months ago was 0.90 (0.35-5,50). This is where I feel my best. I know we are not all the same. I do have faith in my private endocrinologist who explained this to me and he’s been correct in my circumstances. I believe in ‘adequate’ amounts not flooding your system and having a suppressed TSH.
do you miss your medication prior to your blood draw?
Yes, I follow the rules recommended on this forum.
Have you ever checked if your levels are too high after you’ve taken your meds.
No, I haven't. But I have loads of results going back to 2009 and my TSH is always low compared to my Free T4 and Free T3. In the early days I didn't know anything about the conditions in which to get tested. (I didn't start taking thyroid hormones until 2013.) And given all the results I've had my TSH has never been as high as 6, but my Free T3 and my Free T4 have always been low or very low in range.
I didn’t know I’m very unusual. I’ve never seen any data on it. I can count myself very lucky that I’ve managed to alter my levo down slightly and keep to the doses my endocrinologist prescribed that keeps me very well. And keep my TSH and levels within range. I check my bloods every 3 months - all thyroid, B12, ferritin, folate, vitamin D. They are normally very good now but only as I keep an eye on things. I also get my lipids, cortisol and a full blood count done at the same time. It’s all done via my GP on the NHS. I had a blood draw yesterday at 9am without ingestion of any medication. I’m looking forward to seeing those results as the past month I’ve switched from Thybon to Morningside and felt as though Morningside was stronger. I felt slightly over medicated at times. I do feel as though I must comment at times as not all people will need to have suppressed TSH, surely there’s not just me? If my TSH goes suppressed/over medicated I feel dreadful in comparison pretty quickly. For me it’s about energy expenditure versus medication intake and balancing that. And taking adequate amounts not overdoing it. I seem to have worked it out for myself but it did take a few months time initially.
Especially since you haven't a thyroid and your HPT feedback loop on which the TSH relies on is now not in tact and broken as you have no thyroid to complete this circuit as your Hypothalamus - Pituitary - Thyroid axis is disabled and doesn't work.
I know as I was told I as over medicated on just a TSH reading and had my dose of T4 reduced and found myself in an ever decreasing circle of wellness for around 2 years with my whole body ' drying up on me ' and my cognitive function severely compromised.
This was when I found out my ferritin was at 22 and I fell into this forum and started my thyroid journey in around 2016. and around 10 years after having had RAI thyroid ablation for Graves.
The other issue which is unique to Graves Disease sufferers is that we can still have the antibodies ' sitting on the TSH receptors ' thereby distorting the TSH readings even further.
Barbara S Lougheed has Graves and had RAI thyroid ablation and her book title says it all - it makes sense - From Hyper to Hypo to Healing : breaking the TSH rule :
elaine-moore.com - the most well rounded website I found as Elaine has Graves and within her website there is a section on the unreliability of the TSH reading in Graves patients.
I am fully aware doctors are not aware and this is why I have had to become my own best advocate.
My ' go-to ' book is written by Barry Durrant- Peatfield and entitled Your Thyroid and How To Keep It Healthy :
This man was a very successful doctor but chose to keep medicating patients as he treated himself and eventually decided to resign from the profession and wrote his book to educate and equip patients better as he felt the system being implemented was letting patients down.
It's a relatively easy read, even with the brain fog, things do register, and it's a simply easy to understand basic on how the body works and how it all fits together :
First and foremost you need to build up your core strength vitamin and minerals and prepare your body to better utilise any thyroid hormone replacement you may try in the future.
I am loving Barry’s book at the moment! Building up vits, minerals & adrenal support before thyroid supplementation sounds like what he recommended people do… we have got it all so backwards 😩
Dr Peatfield was such a kind and considerate doctor and loved by his patients many who travelled long distances to consult with him, and I was one.
Due to him being pursued by the 'powers that be' re treating patients who had a dysfunctional thyroid grand plus the worry of someone who had restored the health of many patients - he resigned his Licence because of the strain of being accused of not following the guidelines. He was still able to have consultations where he advised the person how best to recover their health.
When the pituitary under performs you get low normal fT3 and low normal fT4 without an elevated TSH. This causes a vicious circle, when some LT4 (or LT3) is given TSH falls further and further reduces the rate of T4 to T3 conversion. It seems the only answer is to give a bit more T3 and accept a low TSH (note it is low, not necessarily suppressed).
An osteoporosis consideration is that a patients who are left severely hypothyroid are likely to get very little exercise and weak bones. They may not have a higher fracture rate because people tend not to break bones when falling out of bed. Someone who is adequately medicated and running around will develop stronger bones, even if there is some bone loss due to hormone excess. It's a long time since I read the studies but if I remember correctly people with very low TSH levels did not have higher fracture rates.
Love your answer. That is so logical to me. If you are hypo and spend your days in bed (because that's all you can do) your fracture risk is quite low (unless your bed is quite high). So, it would make sense to get you up and running (literally).
Good morning. Your story is so similar to mine. I started iron tablets yesterday. God spoke to me for 2 min wanted to cancel my levo prescription and asked me to contact my private endo, i explained i had recieved a message from the surgery asking me to make an appointment to to review my blood test. She said all my results were normal . I pointed out ferritin being low, to which she responded it is low but still in range. I asked her if you would recommend i buy from the chemist and for how long should i take the tablets for? She told me it is up to me i can take it for as ling as i want. This was something i found misleading but it is my health . I think now i know i have to pay for my blood tests too.
You were advised to split your T3 dose, whereas one of TUK's Advisers (now deceased) took his T3 alone in the middle of the night with one full glass of water so that nothing interfered with T3's uptake and it saturated all of the T3 receptor cells that then sent out 'waves' throughout the day and the effect could last between one to three days.
I had to diagnose myself by following Dr John Lowe's advice and despite my TSH of 100 my GP phoned to notify me that my blood test was fine and I had no problems.!
I have looked after my own thyroid hormones since but T3 has now been restored to me by the NHS. Clinical symptoms have also been resolved.
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