I’d be very grateful for any advice or help you can offer, I know this is the best place to come!
I have always had a battle with my endo and doctor to keep my thyroxine at a dose that keeps my at the upper end of the range for T4 and T3 as I don’t feel well unless it is. The problem I have is because my TSH is suppressed and has been for years, no matter what my T4 and T3 levels are they always want me to reduce my dose.
My latest results are back and although they are middle of the range I still feel I’d like to increase my dose slightly. I feel very lethargic, my weight has increased even though my diet and activity hasn’t changed and every muscle in my body aches amongst other symptoms.
My question is, do you think there is scope to increase my dose despite my TSH being suppressed? I know my doctor would like to lower it until my TSH is higher but I really wouldn’t cope! It has been suppressed for years.
Thanks very much
Cath
Results:
TSH <0.01 (0.27 - 4.20)
Free T4 17.5 (11.0 - 25.0)
Free T3 4.2 (3.1 - 6.8)
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Cathrd
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In my humble opinion - and there are many on here much better placed to comment, you could increase T4, but to me, your blood results are crying out for the addition of T3. You aren’t doing much with the T4 you have. The conversion ratio is very poor. I’m sure others will also comment with advice. 🤸🏿♀️
Thank you for your reply! For years I have asked my endo for T3, but he keeps telling me they won’t prescribe this on the NHS in Wales. I do want to try it but because of a heart condition I have, my endo has scared me off self prescribing so ideally I need to find a private doctor but one that I tried to contact didn’t get back to me.
If you can go private - and I know it is luxury not everyone has open to them, you need an endo who is a thyroid specialist who prescribes T3 privately. They would be able to monitor you and help with dose advice as well as weighing up the factor of your heart condition.
My private endo prescribes T3 privately (he offered it me, but I want to try and make T4 work first before I take that route.) If I do decide to try it I know I would have him looking out for me. I’d be nervous of doing what so many braver souls on here do and going it alone.
Might be worth posting asking if anyone can recommend a T3 friendly endo (who doesn’t throw a hissy fit about suppressed TSH), in your area.
I’m the same as you, but afraid to go it alone. I would have before I discovered my heart condition but not anymore. I’ve been so tempted at times to just order some T3 from abroad but would much rather have someone monitor my bloods.
I’m happy to travel to find an endo who will look at T3 as an option as I have researched my area (I live in a South Wales) and cannot seem to find a doctor who is taking on any new patients. Someone kindly sent me details of an endo on here a few months ago but after trying to contact them a few times I’ve been unsuccessful. They seem very few and far between!
I’m glad to hear you have a good doctor who is treating you. Good luck with T4, I hope it works for you and you feel well.
Have you had ever had TPO and TG thyroid antibodies tested?
Essential to regularly test vitamin D, folate, ferritin and B12
Most of us need to supplement some or all regularly to maintain at optimal levels
ALWAYS get actual results and ranges on all tests
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Assuming Hashimoto's are you on strictly gluten free diet?
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy online for under £20
If 2-3 months after improving vitamins to optimal and strictly gluten get FULL Thyroid and vitamin retested, If free FT3 still remains low then you will need prescribing small dose of T3
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
I have never been diagnosed with hashimotos but after a lot of researching myself I have always suspected it.
I do try to stick to a gluten free diet and feel better when I do so. At the moment I’m trying to heal my gut with my diet and probiotics and drinking kefir. Last year I was in hospital for 6 weeks on strong antibiotics (gentamicin) due to sepsis so it’s something I’m conscious of.
I have had my B12 and ferritin tested in the past and my ferritin levels came back very low but within range so my doctor said they were ‘normal’ levels. I’ve taken it upon myself to supplement with ferrous fumarate tablets and I also take vitamin D and selenium.
I have never had my thyroid antibodies and the other tests you mentioned tested although I have asked in the past. I think I need to find a new endocrinologist! The one I see is very good to me but sticks to the guidelines and whilst he admitted a few years ago he’d be happy to monitor me if I decided to take T3 which I bought myself (his way of telling me I should try it although he wasn’t able to prescribe it) he has now changed his mind since I have had heart surgery. I think he’s just covering his back.
Thank you very much for the links for the blood tests, I will certainly look at these and have one done. I was told years ago I had a gluten intolerance but never been tested for coeliac.
As for blood tests online, my surgery is in the process of doing this but I do always ensure I have a print out of my results each time. I don’t trust GPs very much at all! Being told results are ‘normal’ is not enough!
Thanks again, I appreciate you taking your time to reply and help
There's plenty of research to suggest LOW FT3 may be linked to heart issues and osteoporosis
Low TSH with FT3 and FT4 well within range, due to replacement thyroid hormone is significantly different from low TSH due to hyperthyroid where FT4 and/or FT3 are above range
Suggest you do some research and print of any that you think suitable for your next appointment
Thank you for this and for the links. It’s funny, as I’ve always been told by doctors that hyperthyroidism can be the cause of osteoporosis and they’ve never mentioned low FT3 being a cause. Then again, there’s an awful lot they haven’t mentioned about thyroids, medication and side effects! Thank goodness for the internet and people like you all on this forum...
If your TSH has been suppressed for years, then it will probably never rise again, even if they took you off levo completely. Your set-point has been deregulated. And, your doctor should be aware of that possibility. But, they are so blinkered!
I don't think you do need T3. Both your Frees are below mid-range, but they're quite evenly balanced - the FT3 slightly lower than the FT4. It's just that you haven't got much T4 to convert. You really do need an increase in dose.
I did wonder this about my TSH being suppressed and whether it would ever change. It’s good to have a second opinion. I agree that doctors can be blinkered! Either that or they’re hands are tied. I do believe mine is covering his own back and staying ‘safe’ if that makes sense.
I’m hoping that I can increase my dose and as you say, my T3 level should raise when my T4 does. It’s just a battle to stay on the dose I’m on and not let them decrease it! My endo has even written to my GP to say I insist on staying on my current dose despite advice from him. I feel it’s all a battle.
Yes, it does make sense, but he should not be 'staying safe' at the expense of your health! His job is to look after you and make you well, and he's not doing it at the moment.
You could try the counter-attack and ask him why. Why should you reduce your dose? What is wrong with a suppressed TSH? It's been suppressed for years and you're still there to tell the tale, so what is the problem? If he replies with a load of guff about hearts and bones, just tell him the TSH has no effect on hearts and bones, that's over-range FT3, and yours isn't even mid-range, so why should you reduce your dose? And, just keep at it until he gives in. That's a tactic I've used in the past. A lot of them just pass on the dogma that suppressed TSH is dangerous without having the slightest idea why. If he insists, ask for references, internet links, whatever to prove it. Don't let him brow-beat you into surrendering your health.
I am seeing him on Friday so will certainly use this approach! You make a lot of sense and I’m so glad I posted on here. I better write these questions down as my brain fog gets worse by the day!
I'm in the supressed TSH may be significant camp and having said that it needs thoroughly investigating not a knee jerk decrease your medication . latest research and peer reviewed published papers are talking more and more about variable set point, set point plasticity and a much more complex dynamic of thyroid homeostasis than has been assumed for decades. So, a simplistic answer is probably not going to resolve things but if your T4 replacement medication is taken in one go and is high enough to Suppress your enzyme catalyzed T4 to T 3 conversion even transiently for 4 hours after digesting levothyroxine then taking more t4 could make you feel worse. Whereas splitting your levothyroxine dose could increase t3 without increasing t4. You may also need a small t3 supplement but the medics should monitor and investigate your tsh response alongside the free hormone levels and your signs and symptoms including secondary indicators like pulse rate, cholesterol and temperature. TSH is also thought to affect enzyme conversion rates and possibly t4 release and transport into the cells so it being suppressed may be having a down regulating effect despite the replacement t4. How significant that is would very hard to say but it’s another argument for not artificially suppressing tsh unless there is a clinical reason to do so.
I too have suppressed TSH with mid-range T4 and T3. I battled with different doctors for years to even start on levo as my blood tests were 'normal'. I nagged and challenged their view until my gp agreed on a trial of 50 levo. The improvement in my health was amazing. Over time, my dosage increased to 200, with my TSH , T4 and T3 remaining pretty much the same throughout. My new GP didnt like this and sent me to an endo who gave me the scare story and lowered my dosage over time to 125. I felt terrible and insisted that I increase it again. The only way I managed this was by acknowledging that it might harm me, and by being "challenging". How I battled!
I now take 175 levo. I have asked for a trial of T3 and been refused.
I am interested in the comment about splitting the dose of levo and taking it in two lots during the day. Does this help? Is there any research to support this?
Thank you to all the great people on here who know so much and help others.
There has been some interesting research on this, but I'm not sure it'll give you the equivalent of your higher dose. Dr Myhill, writes about it in the second link. She treats chronic fatigue / fibromyalgia patients and says here that in her patients many of them have pituitary gland failure, rather than classic Hashimotos - although (and I know this to be true) the latter is still a possibility as there is a definite subset of autoimmune CFS/Fibro. CFS is a symptom, not a diagnosis!
This link looks at the prescribing and taking of Levo. My feelings are, if what you're doing is working then don't try and fix it, but this would be helpful if the standard waking dose isn't working for you.
Thank you very much. I have tried to see Dr Myhill a few times in the past (especially as she is based in Wales) but unfortunately she is not taking on any new patients.
Fibromyalgia and CFS is something I have suspected I may have for a long time now but whenever I raise my symptoms with my doctor nothing has really been said. I don’t know how much they listen to me and I haven’t got the energy to keep making appointments and going back and forth to the surgery.
I too am of the feeling that if it’s working don’t try and fix it, not my endo still wants to reduce the dose based on my TSH. Its a never ending battle.
You have a very, very similar story to mine! It really is a battle to feel well. Even a small dosage change can make all the difference and being refused even a trial of T3 can be frustrating.
There’s not so much research on splitting doses as on what the thyroid produces when working properly and that increasing t4 decreases T3 conversion rate by the D2 enzyme which gives up to 3/5th total T3 other relevant research is on peak levels of t4 after absorbing a dose and on absorption efficiency varying with state of gut and particularly antagonistic substances from coffee to omniprazole. Together all this creates in my mind circumstantial evidence that split dosing of levothyroxine is not only manageable but may avoid any peak levels high enough to unbalance (reduce) D2 catalysed T3 production with a thyroid state that would otherwise be trying to provide more T3 either from the D2 pathway or the thyroid itself to compensate. I’m trialling split dose levothyroxine myself with monthly blood tests and symptom diary. So far so good. We’ll see
Thank you very much for your reply and for taking the time to write all this. Much appreciated. I might try splitting my daily dose in to two and see if that makes a difference.
I was lucky enough to be prescribed a small dose of T3 well over ten years ago. The difference was amazing!! I fought to get it increases and eventually a newly qualified consultant did increase it, having explained it may make no difference, it may improve things or it may even make things worse. The improvement was staggering. But ever since i've been arguing with both doctors and consultants that it should be reduced. The last consultant I saw a couple of years ago wrote to my gp stating it should be stopped immediately. I'm on 60mcg a day. I really think just stopping it would have killed me. His argument was that my TSH is suppressed - it has been for many many years. I've been repeatedly told about the risk of osteoarthritis. I've just found out that the only way to increase bone density is to eat lots of vegetables. I've been vegetarian for over forty years. My bone density is actually very high for my age!!
I think sometimes we just have to go with how we feel. I did not want a long life of constantly feeling ill. Personally, I'd rather have a shorter and happier life!!
It's not an easy decision to self medicate, I'm very glad that I don't have to but that may change in the future. It's particularly difficult if you have other serious problems.
Thank you for your reply! I’m glad to hear you saw an improvement on T3, I wish I could try it or even just trial it to see what it feels like having been on levothyroxine for 18 years.
I’m with you on the shorter life but being able to live feeling! I hope you’re feeling well now. Isn’t it a shame that our health and how we feel all depends on which doctor we see!
It would be worth getting a second opinion regarding the type of hypothyroidism you have. From what I have read about central hypo, the treatment, Levothyroxine, is the same, only the key markers are only T4 and T3. You could email the admin team for help if you are suspicious that you fall into this category and need help persuading your doctor. Endometriosis suggests that the adrenals are involved (another problem with the HPA axis) . Sorting out adrenal fatigue will probably prove beneficial. It will also help with thyroid conversion. If you are not already taking magnesium and p5p, zinc, vitamin c, milk thistle and b5 then it would be worth considering.
Thank you for your advice. I’m currently taking a good magnesium supplement (forgot to mention this in my original post) and vitamin C amongst other supplements but not the others. Can I ask what p5p is? I haven’t heard of this one.
Ive always suspected that my adrenals are part of my problem. I tend to have low potassium which I’ve read could be part of adrenal insufficiency. I also suspect insulin resistance but my endo thinks otherwise despite my blood tests being borderline. Adrenal insufficiency is not something that I’ve found any doctor is willing to look into for me.
My body has been through a lot in the last few years, to cut a long story short I had sepsis shock and am lucky to be alive. My organs had started to shut down and I was given 3 hours to live. I’m still here of course, but had strong antibiotics every 3 hours for 6 weeks to fight the infection that was damaging my heart. I ended up having open heart surgery and a mechanical heart valve and am now on warfarin for life. Since all this happened I am certainly feeling worse than I was. My endo keeps telling me it’s nothing to do with my thyroid and it’s just my other health problems but my cardiologist tells me my heart is good now. I’m trying to help myself through my diet and living a life as stress free as possible (only back in work for 2 days a week at present) so hoping this will help. I will certainly lay read up more about this though. Thank you
I agree with you on work life balance. Too little makes you feel stifled and too much is tiring. You sound as though you made some sensible choices after your heart operation and continue to do so.
P5P is just B6, but better absorbed. However, given your low potassium, too much b6 / p5p may have a diuretic effect, so look this up as I cannot recall how they interract. I personally have an electrolyte mix throughout the day with vitamin c to help the adrenals. I now use Mineral Mix from Dr Myhill as it also has b12 and vitamin d in it, but on top of that I take extras that include Mag, Zinc and occasional Iron when my levels dip (it is regularly checked with my latest GP, but she thinks mid range is fine, so I always look at the printouts!).
Thank you for the information. I shall certainly be looking at p5p and giving it a try. The mineral mix sounds interesting too, I take quite a few supplements currently but will look into this as an alternative. Thanks!
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Endo has suggested DEXA scan due to suppressed TSH 
IF the TSH is suppressed for many years due to thyroid medication, will it stay suppressed even if you cut back on thyroid meds?
My last test shows very suppressed tsh.
Suppressed tsh - latest blood tests. Do I accept the anticipated reduction of levothyroxine?
