I've been feeling really ill with hypo symptoms for the past five years. These are getting worse. I can't understand my latest bloods.
11/6/19 on 125mcg levo plus 60 mcg lio
Free T4 16.5 ( 11 -23 )
Free T3 5.58 ( 3.1 - 6.8 )
8/8/19 on 150mcg levo plus 60mcg lio
Free T4 24.1 ( 11 - 23 )
Free T3 7.38 ( 3.1 - 6.8 ) I felt hyper on this dose and I reduced levo to 125mcg. Many of my symptoms were much better though.
11/10/19
Free T4 22.2 ( 11 - 23 )
Free T3 8.83 ( 3.1 - 6.8 )
Is it possible for T3 to increase despite a decrease in levo? I expected results to be similar to 11th June. I had an argument with my doctor last week as she had u turned treatment clearly after speaking to the senior partner that I believe has caused all my problems. He believes TSH can not be suppressed - it can only be very low!! I told her that if she would not increase my T3, I would buy from abroad and self med. She now says as I am depressed I am suffering with chronic fatigue syndrome. I googled that. It does not fit with my symptoms.
After my blood test on Friday, I increased lio to 75mcg a day. Today I am feeling so much better. When I phoned for my results this morning I was told to see the doctor again to reduce my meds. I have an appointment with her on Monday. I am at my witsend. I'm so miserable all the time.
Any help is greatly appreciated.
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dizzy864
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Technically, yes it is possible for FT3 to increase when you decrease your dose of levo, when your FT4 is as high as yours was.
What happens is, when the FT4 level gets to a certain point (although we don't know exactly where that point is) T4 starts to convert to more rT3 than T3. So, if you reduce the FT4 level by reducing your dose of levo, the T4 will go back to converting to equal amounts of rT3 and T3.
However, I'm not sure that that fully explains your results, which don't seem to follow any sort of pattern. Do you know if you have Hashi's.
The senior partner obviously doesn't know much about thyroid. When you are taking T3 - especially a high dose like yours - it is going to suppress the TSH, whether he likes it or not. That's how it works - and even he can't alter nature! And, the reason it becomes suppressed is because you don't need it anymore. TSH has two jobs: a) it stimulates the thyroid to make more hormone, so obviously that is redundant when you're hypo; b) it stimulates conversion of T4 to T3, so if you're taking T3 ready-made, so to speak, you don't need TSH for that, either. The pituitary senses that there is enough T4 and T3 in the system and stops producing TSH. It's perfectly natural and right.
Frankly, with such ignorant doctors, you'd probably be better off self-treating. If they are going to insist that you reduce your dose until the TSH gets back in-range, they are going to make you very, very ill. But, they'll be perfectly happy 'diagnosing' you with CFS or something, to explain your returning symptoms, which can't possibly be anything to do with your thyroid because your TSH is 'in-range', and their job is done. And you will suffer the consequences, not them.
Thanks for your reply. I have never had any doctor or endo mention even the possibility of me having hashi's. I have never, as far as I know ever had any swelling or tenderness in my thyroid region.
Is there a test to find out if I have hashi' s? Is the treatment any different to that for hypo?
The senior doctor at my gp surgery is absolutely convinced that if I reduce meds, my TSH will rise. Five years ago, he drew up diagrams on how I could gradually reduce my T3. I tried and was really ill for six weeks, went back up. He then did the same little drawings on how I could reduce T4. This time I persevered for a couple of months. Again I was very ill and went back up. Needless to say my TSH did not rise!! I've been ill ever since. I really believe that it was reducing the meds that made me ill.
I then decided I'd continue as I was and put up with being unwell all the time. Unfortunately, I've continued to get more and more symptoms and now I am no longer functioning. In April, I saw another doctor and she was initially helpful. But no longer. I was told recently that when I was so well 8 to 5 years ago not only my TSH was suppressed but my T3 was also slightly above range. So, obviously I need T3 to be high.
I am not sure whether I should try reducing T4 as I've increased T3. In view of what you've said, that will only make my T3 rise even more.
When I see the doctor on Monday, she will instruct me to reduce meds probably T3 as it costs more!
I can't understand why she can't see that this will only put me back to what I was in April when I saw her because I was feeling so ill.
Unfortunately, moving to a new gp is not an option as there is not another one that covers my village. My doctor did refer me to an endo at my local hospital back in April. I'm still waiting for an appointment. I have no faith in endos either unfortunately.
I'm leaning towards accepting what ever the doctor tells me on Monday and then self medicating above that. I'm going to the States on holiday in a couple of weeks. I'm absolutely
dreading it as I'm always ill immediately before or while on holiday and end up wishing I had not gone!
I have never, as far as I know ever had any swelling or tenderness in my thyroid region.
Neither have I, but I still have Hashi's. I don't think that is a requirement. But, more importantly, have you ever had your antibodies tested? That is the best way to find out if you have Hashi's: TPO antibodies and Tg antibodies. But, the treatment is the same, it just gives you greater understanding of how your levels behave.
The senior doctor at my gp surgery is absolutely convinced that if I reduce meds, my TSH will rise.
Well, it might and it might not. That is unpredictable. But, the most important question is: by how much would you have to reduce your dose to make it rise? You would probably have to reduce it by so much that it will make you sick again, so there's not much point, is there. And, yes, there's a distinct possibility that the reason you feel so bad now is because he messed around with your doses like that. Frankly, he's a liability, and shouldn't be treating hypo patients.
I am not sure whether I should try reducing T4 as I've increased T3. In view of what you've said, that will only make my T3 rise even more.
I did say 'technically', there's no guarantee that it would in your case because we don't know how well you convert as a general rule. But, it's not likely to raise your TSH - I doubt even stopping levo altogether would raise your TSH because of the high dose of T3 you're taking.
When I see the doctor on Monday, she will instruct me to reduce meds probably T3 as it costs more!
Just say no. Remind her that her job is not to dictate to you, what you must and mustn't do. It is her job to advise you. If you don't wish to follow her advise, then that is down to you. You are supposed to give your informed consent to any alteration in your treatment, but you are not obliged to. And, if she reduces your prescription, carry out your threat and buy your own, and self-treat.
I can't understand why she can't see that this will only put me back to what I was in April when I saw her because I was feeling so ill.
Because, not only does she not have the education to understand that, she doesn't even care. All she cares about it the cost of it all, and following what they call 'guidelines', without even understanding the irony therein!
Hashi's is an autoimmune disease where the immune system attacks the thyroid and slowly destroys it.
It starts our with a 'hyper' phase, not true hyper in that the thyroid over-produces thyroid hormone, but high levels of thyroid hormone in the blood because the dying cells deposit their stocks of thyroid hormone into the blood. The levels eventually go down by themselves as the hormones are used up or excreted, and you become slightly hypo because you now have less thyroid to make thyroid hormone. After that, levels can swing between hypo/'hyper'/euthyroid as the immune system randomly attacks the thyroid. But, after each attack, you become more and more hypo until the thyroid is completely dead.
So, the signs and symptoms can change between hypo and hyper, but mainly hypo - although you can have both at the same time. You may or may not have a goitre depending on whether it's true Hashi's or Ord's - we tend to call them both Hashi's.
It is usually diagnosed by testing antibodies - which can show up under different names in the results - mainly TPO antibodies (which is what you had) but there's also Thyroglobuline antibodies, aka TgAB. Your TPOab appear to be negative. But, as you know, you cannot prove a negative, and never was that more true than with Hashi's! Antibodies fluctuate, so just because they are negative in that test doesn't mean they will always be negative.
Also, you can have Hashi's without ever having over-range antibodies. It is then diagnosed by an ultrasound, once the damage to the gland becomes visible. But, when levels swing around without any change in dose, it becomes pretty obvious that you have Hashi's.
Hi, Thanks for that. I will mention it to my gp on Monday.
During my research I found an article that stated that Iodine, Zinc, Tyrosine, Magnesium, Selenium , Iron and Vitamins A, C, D are all essential for thyroid meds to be absorbed properly. I have never come across anything that stated anything other than Iron, Ferritin, Folate, Vitamin D and Vitamin B12 being essential.
I've never had these additional things tested. Has anyone else?
I am more at risk than most of being deficient as I'v been vege for over forty five years.
What you say about the TSH stimulating T4 to T3 conversion is interested...during the last five years on T4 only, I had a doctor who wanted a suppressed TSH in Hashi patients as he claimed the TSH is what triggers autoimmune attacks. For some reason, he claimed that a TSH below 0.05 was dangerous, but he was happy for it to come back at 0.06...
Anyway, it never did anything for me and I now know that my FT3 levels (never tested back then) were low...so, maybe having a suppressed TSH on T4 only is a bad idea...?
If it weren't so sad, that would be funny! 0.05 is dangerous, but 0.06 is OK? How crazy is that? Nowhere in Nature do you get such a clear and precise cut-off line. In any case, we now know that having a suppressed TSH isn't dangerous at all.
Yes, there is the belief that it is high TSH that triggers the autoimmune attacks. TSH stimulates the thyroid, and it's the thyroid action that triggers the attacks. Shut down the thyroid and the attacks will also stop. It's an interesting theory, and worth a try but I don't know how much truth there is in it. Even with a suppressed TSH, the thyroid can struggle to produce hormone, because that's what it does.
But, to the main point of your post, the thing is with conversion that so many things can affect it. Including the fact of having Hashi's. So, it could be that even if your TSH was higher, you would still have poor conversion. There are so many variables, unfortunately. Nothing is that clear cut.
Back then, I did not know what I know now, so I tended to believe whatever doctors told me...until I learned to think for myself, that is
It's really insane, isn't it...doctors believe there is a cut-off point where you can say: "now you are hypo/hyper/optimal", regardless of how the patient feels...back in those days, my doctor insisted Hashi patients needed a TSH below 0 to prevent further autoimmune attacks, but he never bothered to test my FT3...so, of course, most if not all hypo symptoms remained.
I recently read about an investigation in to cats thyroid issues. It took blood samples twice a day from both healthy and thyroid cats. The aim was to get a more accurate healthy range for TSH, T3 and T4.
It failed to do so as it was found that the ranges for healthy cats varied too much.
I was interested because an old cat I had was hyper. We argued with our vet several times that he was over medicated because he was like a zombie. Our vet, who we considered outstanding always said his bloods were in range and he had to treat to that.
May be some bright doctor will one day realise that humans are no different to cats in this respect!!
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