After my dose of T4 has been increased,I am having some hyper symptoms (heart pounding, not sleeping too well, anxiety in the morning etc) but yet still feel hypo in other ways (low basal temp, always cold esp feet, low, muscle and joint pain, fatigue etc).
Due for another test in a few weeks but last results were TSH suppressed, FT4 near top end of range, FT3 stubbornly just mid range.
So, what I was wondering was, if you are not converting well to T3 and increase T4, can you get a mix of hyper or hypo symptoms?
Thanks in advance-don’t know where I would be without this site! 💐x
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Agapanthus1
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This has troubled me since last summer. I don’t covert well and so I’ve always had to increase my T4 to be able to get on with my daily life. Last summer something happened and suddenly my 175mcg dose was too high for me. The t4 was still in range, the t3 was barely in range 3.5 (3.5-6.5) and yet I had Hyper symptoms. If t4 isn’t active what’s the craic?
And yet when I had Hypo symptoms 3mrhs later my t4 dropped to mid range but my t3 only ever went to 3.9 - yet I felt Hypo with a lightly bigger t3 range 🤷♀️ I dunno I really don’t have a clue but I’m getting some T3 so I can do a combo.
You have Hashi's, this is going to cause fluctuations in symptoms and test results as the immune system attacks the thyroid, it's par for the course and you adjust dose of meds if necessary when swinging from hypo to hyper and back again.
Have you looked into Hashi's so that you can understand your condition and help yourself as much as possible? Standard information passed on here (copy and paste job so not tailored to you specifically but just general information):
Hashi's is where the immune system attacks the thyroid and gradually destroys it. When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.
Thanks SeasideSusie. Yes I understand Hashis very well but I still can’t find an answer as to Hyper symptoms with a low T3 and mid range - higher T4. I’ve had 4blood tests since January which are showing the decrease in FT4 and then the increase in FT4 but no change in FT3. I now feel I’m on the verge of Hyper again. But how can that be with a low T3 🤷♀️ Lack of T3 gives false symptoms of Hyper?
Well we’ll soon see, my T3 arrives next week and I’ll be doing the combo 🇩🇪🙌👏
Along these lines when I finally found a good endo last (who has helped me enormously but I am not "there" yet) he did all the testing.
As I had no antibodies he told me I don't have Hashi's but I do seem to have both hyper and hypo symptoms. I also have gut issues and had several low nutrient levels and deficiencies which are being treated.
As my thyroid function was destroyed from radiation does this theory make sense? I could have originally had Hashi's (always very hyper, etc) which might have become problematic later on if I hadn't lost thyroid function. Sort of like a diabetic who is well-controlled with diet and able to stop insulin is still considered to have the disease though currently asymptomatic.
This theory makes sense to me but if it is completely off the wall I can accept that. I saw my Endo PA this past Friday and am waiting for repeat lab results which she will see in the next few days. I feel very much better but I wanted to raise my T3. She said probably not. I understand she wants to see the labs but my gut feeling is I'm not on an optimal dose and might be someone who does well in T3 alone.
I have terrible gut absorption problems from abd radiation years ago.
When I get my labs I will post later in the week. I'm trying to line up my ducks to send an email to the Endo and ask him about my med suggestions if the PA says no. She is good and helpful but IMO tends to be a little conservative about any suggested changes from patients.
The Endo's office policy is for every 3 visits we are seen for 2 (part 1 of 2 posts)
• in reply to
sorry-con't pushed reply by accident, by one of his PA's and only see him on the 3rd. To me this wastes a lot of time and drags out the time before I can see him for changes.
I can vouch that the other way around i.e. normal T3 and low T4 feels terrible. I take T3 which suppresses endogenous T4 production so my T4 dropped below range on a dose of Levo that would otherwise out T4 in the lower part of the range. With this pattern of normal T3 and low T4 I have much better cognitive function but terrible muscle pain and fatigue. Upping the T4 to a higher dose puts me back in range for T4 resolves the pain and fatigue a good bit. So I definitely need in range T4 and T3. Not sure if this is due to T4 working directly or more T4 being converted to T3 and boosting T3 further but I know I'm symptomatic without it.
In the end I couldn’t get a balance of T4 and t3 I could get on with. Endo persuaded me to do a year. T4 only with no dose changes. After about six months I felt more stable, still not 100% but I like the stability and feel like I’m done with changing doses or trying others meds. I now take my T4 at night usually after a few squares of chocolate or a glass of red wine. I don’t avoid eating anything in particular and I seem to keep a stable TSH, T4 and T3. A big factor that helped was just changing brands from Teva.
Many symptoms are common to being hypothyroid ie under-medicated with thyroid hormones, and overmedicated. If you have high FT4 but FT3 is still low then you are still under-medicated, but assuming your ferritin, folate, b12 and vit D are optimal, then the under- medication would appear to be T3 not levothyroxin.
Hi susie thanks so much for your v informative reply. I did wonder if I was having a flare as I got a swollen feeling in my throat. I dropped my dose a tiny amount, hyper symptoms passed and I am now increasing again.
I have tried to learn as much about Hashimoto as poss-my vits and minerals are all optimum and I am gluten free plus lots of gut healthy probiotics etc.
I am on the Toft protocol of increased Levo in the hope that I will convert more T3 as a result but not sure it is working for me and perhaps I need to take T3? X
Still strange though isn’t it?? If T4 is inactive why are you experiencing Hyper type symptoms? T3 isnt being raised. I find it fascinating. I’m just sorry that the NHS seem to need firm answers before they’ll say yes to T3 but in actual fact they should be giving it ‘therapeutically ’ while they find out the answers 😩
I am, in terms of meds at least, a step ahead of you.
I have exactly this problem - feel free to read my profile - and I was under the care of Dr T until he retired recently. I have slowly been improving from a “crash” 18 months ago but can’t shift the last lingering symptoms, really heavy limbs/muscle weakness and brain fog. Everything else had mainly gone.
He tried increasing my levo from 150mcg through to 200mcg and whilst I felt great for a while somewhere between 175 and 200, after about 10 weeks I became over medicated. I had wondered in the past if I was, but this was very obvious. Still, my T3 was mid range (results in previous posts) and the heavy limb thing was if anything worse!
So, he started me on a trial of T3, 10mcg daily and reduced my levo to 125mcg.
Initially I felt fab, then after three days had the most horrendous headaches so I stopped and restarted on quarter tablets. Now that I’m back to the full dose I feel undermedicated again and last week was quite unwell. I wondered, and others on here have pretty much confirmed, if my T4 was now too low. I’m doing a blood test tomorrow and suspect this will be confirmed.
So yes, in answer to your question it IS possible for T4 to be too high and still not enough T3.... it appears it’s possible to have a prescription for T3 to add to your T4 and still have symptoms too! 😩 It’s all trial and error - we’ll get ‘there’ eventually
You've just described how I'm feeling. When T3 was added and vit levels checked and corrected last year I began to feel better and better. Now I feel I'm sliding backward slowly.
I don't want to hit bottom again before the doctor feels the need to make changes.
You know about 3 weeks ago I went to the E.R. for what seemed the worst headache of my life. Left frontal pain with terrible throbbing. I rarely if ever get headaches and only went because of my afib and because a headache for me is so unusual.
CT scan fine. They didn't find anything and I felt foolish for even going (their attitude helped my 'should not have come here' feeling.)
Now after reading this thread I feel it was related to thyroid meds. I mentioned it to the PA Endo Friday but she didn't even comment. Oh well!
I never had a migraine so don't know what that would feel like. From symptoms I've heard patients describe I don't believe it was a migraine though the ER doctor thought so. My feeling was 'we gave her a diagnosis now we can discharge her.'
GP treating me for migraines, I am almost certain I'm under medicated and I no longer take any meds for migraine that I never had, also sinusitis I don't have. I also ended up in A&E with severe so called migraines!! it is in my opinion now, over medicated for issues I never had and misdiagnosed. I just need to be listened to, my levels are not to my body's need but to my Dr's need and his range. I am seeking help from a private Endo and see where that leads. If not for this forum I would still think I was suffering migraines, I am 68 and never had migraines before and its highly unlikely I would start now. I don't even know why I consult with my GP as he really does not know reference ranges or just likes to save money at the expense of my health. I only take levo at 75mg, reduced by another Dr because of age not range! apparently I don't need so much now I am old!! Ohhh and I also have M.E/CFS, diagnosed by yet another GP, the list goes on and the ignorance continues. Unfortunately for the GP/NHS we are a very educated society and have access to many papers written by far more educated people than them! Guess I better stop rant now :))) All said in good humour, we need it :)))
Loed deliver us from some of these doctors. From your story, my experiences, and other horror stories I feel we probably would have a malpractice suit if so inclined. Many doctors are lucky most of us don't feel that way.
I'm 75 and now if I have a doctor who dismisses me and is not interested in allowing me to contribute to my care they become history.
If we can be more in charge of our condition. If the Gp’s et all would stop treating us as dim witted children then we wouldn’t hit rock bottom. As with everything in life the longer we live with something the more sensitive we become. For me what was acceptable level of activity 10yrs ago is not the same as now. Extreme symptoms before starting treatment were gone when Levo started. But now 10yrs later I no longer find the treatment effective but also my condition has evolved but also I’m more in tune to small discrepancies in how I feel. I hear my body, I know the signs quicker than before. My GP’s think this is too kooky for them and I should accept being ‘within range’ but who’s range? His range, her range? Everyone has their own range, I’m just searching for mine (if they insist on using ranges 😩 which they do)
If the truth were known there are probably many of us who keep up with research, informative articles, etc more than our doctors. And it's often likely we are better informed about what is new or better care for our problems.
The 2 doctors I love are my EP and my 'new' primary. They are always receptive when I tell them something I've learned that they didn't know about. They are not threatened. They both are, imo, brilliant, and they freely admit they have difficulty keeping up with their journals and new medical info because of time constraints.
My EP is not a 9 to 5 type doctor. When I've been hospitalized I've often seen him in the halls very late trying to get everyone seen and monitoring care.
There's no shame in not knowing something. The shame is in refusing to learn when worthwhile knowledge comes our way and we say 'No' because of our egos.
Can't agree more. Everyone has a different range they can go up to, and as we get older, our conversions might get worse or we need more t4 due to the nature of this disease. Like you said, you need to listen to your body carefully, and you can catch it all in the right moment.
It would be kinder if you could have T3 added to T4. Several Research Teams have shown that a combination is preferred by those who don't do well on levo alone and should be 3:1 or 4:1 (T4/T3).
Take it slowly at first and don't demand as he may have to follow what he's been told, but you can say you know several research teams have found it beneficial to trial T3/T4 combo.
Yes your quite right, I normally let them do all the talking and see what there opinion is before replying. My Endo is private so I am hoping he gives me the true and professional view, at the same time he will be the Endo I eventually get to see on the NHS, so I know he will want to do what’s right privately but then he will be faced with what he can say for when he sees me on NHS!! Difficult for him, have to say though he put all my blood works through the NHS with a t3 test and pituitary gland test.
Interesting links and did like the document for doctor, did make me smile as my doctor does have a short attention span 😁 even so I shall send a copy to my surgery for him. I think I read every paper going 8 years ago and even gave copies to my then GP, he said he was surprised at how much there was to know but insisted I had gone from hypothyroid to thyrotoxicosis !! I never got better and they diagnosed ME, I settled for that as was now branded a trouble maker at this doctors and to ill to argue. This time I am determined to get well. Slow steps
The following 'names' appeared after the introduction of blood tests for thyroid hormones (about ten yeas after). Before this we were all diagnosed upon our clinical symptoms alone and prescribed NDT (natural dessicated thyroid hormones) - no blood tests only symptoms.
ME, CFS, Fibromyalgia
The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges. These are also rarely tested. That's why members get their own.
He's probably come to the decision:-
"from hypothyroid to thyrotoxicosis " if your TSH was below 1 but most of us like a TSH below 1. They seem to think they've to restrict our dose by keeping the TSH somewhere in the range when it should be at the bottom.
Hey, just to add my two cents I have been through Levo, NDT and some synth T3. I have learned my hypo and hyper symptoms are sometimes the same with some variations. Synth T3 gave me face pain and headaches.
It does take weeks and weeks to adjust to Levo, much slower than to T3 or NDT altogether in my case. It's like watching paint dry! Anytime I raise a dose I have hypo and hyper symptoms for quite some time. Then I have good days and again bad days come, unfortunately this is how it is when you adjust. When you stop taking t4/t3 and go back to t4 only you can be hit with any symptoms as your hormones (including female hormones, insulin, cortisol etc) fluctuate. When I stopped NDT and went to Levo only I was super hyper the first 3 days, then I hit the worst depression and hypo symptoms ever for 10 days, then things started to adjust a bit. Hopefully this information will help someone x currently I am working on my conversion as it's a bit low at FT ratio 2:1, but I am functioning, with bad and good days (I used to be bedridden for 2 months in 2017 at the age of 33!).
I had no idea really that all these complications can go on, I’ve been treating myself as if it were ME as doctor said 8 years ago, little did I know it was my thyroid although I did question them about this, got same answer as every year, thyroid fine, liar liar pants on fire comes to mind🤣 I as many here and like you suffer terrible side effects and I am now house bound, my only outings are to Endo or GP, GP made it quite clear that there was nothing wrong with me and I don’t need to visit surgery as I am not an emergency case!! I don’t need him and shall take care to CARE for myself with good guidance from the kind people here. I’m still learning and I’m eager student with foggy brain 😁
Self-treating can work well and I think the majority on this forum have sourced their own thyroid hormone replacements and recovered. They then could have a normal life with no symptoms and energy returned.
Always remember that blood test are at the very earliest, fasting (you can drink water) and allow an hour before eating. Food interferes with the uptake of the hormones.
You also have to allow a gap of 24 hours between last dose and test and take hormones after.
Vit B12, Vit D, iron, ferritin and folate have also to be optimal.
Last test for NHS GP was done late and after taking all meds together, no one told me but I found out here how to get them done. My Endo ordered more tests as I mentioned and he said early test before 10 water only and test at hospital only so it can go straight to lab! Thanks again for helping and hope one day to be of help to others 😁
It certainly isn’t making me feel good, I have added iron tabs from doctor, he gave them begrudgingly . Vitamin D spray, multivitamin, vit c to add to iron pills. Cod liver oil. Food makes me nauseous so do have trouble getting vits in by food.
I’ve a lot to learn and hoping Endo will have results of which way forward for me, was on food supplement with all added vitamins but NHS withdrew when my weight increased !! I am learning from here regards thyroid and vitamin deficiencies
I didn’t know about the vitamin and minerals despite only having a liquid diet for to long, wow I can’t eat one orange in a year let alone 6 in a day. Wish doctors looked at the whole package needed
Yes have been informed here that my levels are not good but doctor said they were all good, well they are probably good enough for NHS but to be honest I struggle with digestion so I know I don’t get vitamins on my plate. Adding them now by supplements, all this I learn from here and am so lucky to have this site😁 I am trying to add one at a time so as not get to confused, don’t take much
Was a tumour called a GIST and now removed but caused me to not be able to eat solids, I am now able to eat very tiny amounts but have to have calorific no’s which are not nutritious. Now I am able to eat soft foods that don’t need to much digesting, hence supplements are easier 😁
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And my T3.
Too much T4 and ?too little T3
Does RAI worsen T4 to T3 conversion?
is it possible…
