Have been taking levothyroxine for over 30 years. In the earlier years, the dose was gradually increased. At that time, medical records were not online, and I had no conception of T4,T3 etc. I was well overdosed at one stage and it affected my mental state (severe paranoia) before doctors realised. I had no idea. Now I can tell immediately if I'm on the correct dose and can link this with test results. My dose has been the same (175mcg) for the last 20 years. No matter what doctors say (and consultants, doctors etc have wanted to reduce my dose) I know when I am under/overdosed by how I feel and react and it always links with having a good, but normal, level of T3 (regardless of T4, TSH levels). This, of course, is my personal experience and may not apply to others.
My experience is that I’ve had to push for diagnosis and every dose increase since. My view has been that if I’m still symptomatic then “normal” results aren’t good enough but this isn’t the view of the GPs I’ve seen. So, if I’ve been feeling unwell following an increase, I’ve asked for more and challenged the doctor regarding my symptoms.
I’m now on a 100mcg from the GP but topping this up myself. My TSH was considered to be too close to bottom of the range for a dose increase from them. I found 125mcg to be slightly too high so I’m trying 112.5mcg to see if that’s the sweet spot for me.
My hashimotos doesn’t seem to be especially complicated currently - I don’t appear to have bad conversion from T4 to T3, I haven’t reacted badly to levo and don’t yet think I’ve come to a point where I’ve exhausted its full potential so trying NDT or synthetic T3 isn’t necessary at the mo.
Generally though, I’m finding that I can only get so much help from the GP but the rest has to be self led. Monitoring symptoms, challenging the GP, helping myself to test and restore vitamin levels and ultimately self management of my levo. It’s not been a quick process but I do feel like I’m gaining some traction now!
I didn't have any problems, doses upped at the right time and well monitored but all this was a long time ago and when FT3 was tested. We can have high FT4 and often doctors think that's good and some think it's too high and drop your dose and often ignore the fact you are symptomatic. FT3 reading could most probably be very low through conversion issues but this going on deaf ears and we don't improved. So sad that so many, in my opinion, are so badly treated as this must be a huge contribution about the time it takes, if ever, to be the well. So full testing and knowledgeable doctors would be a great help. Sadly from what we hear that slows/hinders our progress. So learn all you can and ask questions if you think you are getting nowhere.
I was on Synthroid for over 20 years. Still had symptoms but was naive and took doctors word, Then 3 -4 years ago things hit the fan so to speak. I was having all kinds of hypo symptoms again, was very fatigued, low stamina and was starting to have what appeared to be allergic reactions. I did private testing and my FT4 was over range my TSH was, of course, suppressed to under .50 and my FT3 was at 2.6 or the very bottom of the range and my RT3 was twice over range at 60.2. It's no wonder I felt like crap. I still am having all kinds of issues with the doctors. I have a PCP that has no clue and an now an Endo that doesn't 'condone' T3 only process when after this huge problem I actually went T3 only and felt better than I had since my 30's and I'm 68 now. So am back at a combo of Tirsoint (T4) and T3 and I am now experienced itching especially head and ears and very moody and haven't had that issue in a very long time. I have learned over the years that it is up to each of us to be our own advocate and to listen to our bodies. We live in them and they need to take us seriously. Read everything you can get your hands on and good luck.
Looking back I probably had thyroid problems several years before being diagnosed.
In March 2018 I was finally diagnosed with "Subclinical" hypothyroidism as TSH was just under 6. In April there were three weeks of what seemed like a virus infection, but even when the fluey feeling passed I still felt unwell and could hardly think or string a coherent sentence together. In May I was finally given a thyroid blood test which included TPO antibodies and started a clinical trial of thyroxine by the beginning of June.
My TSH got "Within range" with 75mcg Levo, but thankfully was given an increase to 100 mcg. About three days after starting on 100, I began to feel much better, (on previous doses this didn't happen for a week or more) but this only lasted a short time - maybe a week or so, before gradually declining to more or less the same as before. I assumed I would be granted another increase because of continuing symptoms (though they were not nearly as bad as before treatment).
However, the last test, in January, showed a TSH of 0.01 (T4 was just under the top of the range) so I was put back down to 100 and 75 mcg on alternate days. I was assured it was because of the hypo/hyper overlap in symptoms and I was definitely overmedicated. I suggested testing T3 but was told that I would need to see an endo. I asked if it was possible there was a hypo swing at the time of the test but it was brushed aside.
So, it's a waiting game to see if there's any improvement. There hasn't been so far.
One thing I discovered though is that there is no going back if your TSH remains suppressed for a long time, so I decided to wait until the next blood test - in March, and maybe get a private test as well, to include T3.
Maybe get tested every 8 weeks. It could be taking a little longer for ur body to adjust to the dose. My Dr always says to do it every 8 weeks. Also never miss days. That will throw it off.
I was first diagnosed with Hashimoto’s about ten years ago, and my dosage of levo went up every time I was tested. After some reading, I became convinced that T4 alone would never resolve my symptoms and was surprised to find my doctor open to prescribing Natural Dessicated Thyroid (NDT). I’ve been on a consistent dose of NDT for a couple of years now and I feel better than I ever did on levo.
That said, your doctor will typically start on the low end and it could take a while to get to the dosage you actually need, even if levo is the right medication for you.
Wow that’s a hefty dose ,I decided to self medicate 2years ago after 19 years of suffering and no help from doctors or the endos. As to symptoms I had the works from foggy brain lack of concentration numbness in legs feet hands. Pain in neck throat jaw ear , difficulty swallowing, inner tremors, thudding heart , palpitations, dizziness, pain in muscles and joints, insomnia, and of course dreadful fatigue. Only allowed thyroxine which helped a little . Since taking thyrogold most symptoms have disappeared , 1 capsule 150 mg s a day and for me , amazing .for you to take 900 mg s a day seems extreme but then again we are all different what works for one doesn’t for another. Best wishes
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