What to do? I had a telephone consultation as you do these covid days with my GP, who on the whole is a genuinely nice human being and has his patients best interests at heart, but like various posts have indicated he with many others have been sat on the "I'm not really up for the thyroid management" shelf collecting dust with all the others. Shame!
The telephone call went reasonably well to begin with until I started getting into the nuts and bolts of all things thyroid and in particular because I have a predisposition of being selfish, mine!
Now this is where it all fell down and the conversation became a little terse, on his part, bless him. I questioned him on my last set of results the possibility of increasing the dose of Levo which in the he eventually acquiesced to a further 25 which I've currently been taking for the last 6weeks with I have to say I have noted a great deal of difference in fact none.
Now the the final straw or the final nail in the doctor/patient relationship coffin was when I suggested that perhaps it maybe thinking laterally a prudent idea to refer me to a consultant who's area of expertise is in "All Things Thyroid" not that there are many judging by what I've read on here! Well although this was a phone call and not zoom I can only assume that he was sitting bolt like in his pram expressing his consternation by throwing the entire contents of said pram from it. Again shame, because I genuinely like the man, still do, but I don't think it's mutual ?
Now like many here on this wonderful forum which is a labyrinth of historical ideas of which I find so confusing, I would really really appreciate where to go next, because I am my wits end trying to carry on the way I'm currently feeling!
Do I continue the way I am with the same level of medication, do I self medicate introduce something else like T3,NDT or even the Metavive I think it's called
At least the sun is out, but then do we really notice?
On levothyroxine we need GOOD vitamin levels for conversion of FT4 to Ft3
Have you got recent vitamin D, folate, ferritin and B12 results?
What vitamin supplements are you currently taking
Are you still on strictly gluten free diet
Suggest you get vitamins and thyroid levels tested 6-8 weeks after latest dose increase in levo
Which brand of levothyroxine are you currently taking
Do you always get same brand of levothyroxine at each prescription
All thyroid tests should be done as early as possible in morning before eating or drinking anything apart from water and last dose levothyroxine 24 hours before test
I have blood test next week, whereby I will have to speak to the GP to ascertain the form require and I ask him if he would be kind enough to add those to the list, I'm not optimistic judging from how the last call concluded, hopefully he was just having a bad day! I'm currently taking Vit C Vit D+K2 a B complex last weekend as a special treat I administered a b12 shot, and selenium and zinc, all of which I take 2 to 3 hours after the Levo
I've been on the current dosage for 6 weeks always on Accord. Yes still Gluten free.No treatment for my anemia as this condition is predominantly about my bone marrow, and any treatment at the stage I'm at may have a detrimental effect on a potential transplant
Hi SlowDragon - I didn’t know this - and have an almost undetectable TSH. I may have to have an operation in the next twelve months. Please could you advise what you mean by good records of FT4 and FT3 and also what sort of Fitbit does a good job? I can post separately if you think that would be better as don’t want to hijack concinnity. Many thanks for your help.
Both websites are American, so don't expect your UK doctors to have read them or even to be aware of their existence. Doctors in the UK in my experience tend to be very parochial - they struggle to trust any links or info that doesn't come from other Brits, and it goes without saying that info from patients is rarely trusted either.
I understand that you are hobbled by your condition of aplastic anemia, and that feeling better is going to be difficult for you.
We might not be able to help you much, or at all, with your anemia condition, but always bear in mind the following :
Hypothyroidism makes people feel terrible when it is poorly treated.
But, as a simple example, ...
If you have hypothyroidism AND vitamin D deficiency you will feel worse than you would with hypothyroidism alone. So, if you have low vitamin D, please do what you can to get it tested and fixed - it will help you to feel better than you currently do. The same applies to vitamin B12, folate, possibly zinc and/or copper as well. [Zinc is often low in people with hypothyroidism and copper is often high.] You might be low in selenium, vitamin A, vitamin C, some of the other B vitamins.
Some nutrient deficiencies can be treated without testing because the body will expel any excess via the faeces or the urine e.g. vitamin C. Low magnesium is amazingly common in all sorts of people, but testing for magnesium is hardly worth doing because less than 1% of the body's magnesium is found in the blood stream and the body prioritises keeping magnesium levels good in the blood, but it could be desperately deficient in other tissues. As long as the kidneys function reasonably well they will expel any excess magnesium. So people on this forum will often supplement magnesium and they find it helps a lot.
Taking vitamin D increases absorption of calcium from the diet (and I notice from your last post that your calcium is very low in range). You don't want calcium to end up lining your arteries, you want it to go into bones and teeth. To achieve that the body needs good levels of magnesium and also vitamin K2.
I'm afraid there are no short cuts to feeling as well as possible with a thyroid condition, and your anemia problem will just be making things much, much worse. Doing research into our various health problems is never easy at the best of times - and with brain fog it is even harder. But it really is worth it. Optimise/improve what you can.
If you can tell us what drugs and supplements you take and at what dose we might be able to suggest some other over-the-counter supplements that might help you to feel better, or more realistic doses of the optional things you currently take.
...
Thyroid hormones should be increased or decreased in fairly small increments - 25mcg of Levo is a fairly average increase when people are as under-medicated as you. But when your results get closer to being good you might want to adjust in 12.5mcg amounts or even smaller. Too big a change can really shock the body. Having got your doctor to agree to increase your Levo by 25mcg you should ask for re-testing of your thyroid levels about 6 - 8 weeks after you start your new dose.
You could try self - medicating with T4 (Levo), T3 or NDT but it is getting harder and harder to find reliable suppliers. And the scammers are always with us, sadly. But in your shoes I would suggest optimising nutrients to start with. When you have exhausted the help you can get from your doctor and have improved your nutrient levels then branching out might be something to consider. But on forums like this one you won't find anyone who admits to being a doctor, and even if you did you have no way of knowing if they are telling the truth, so be wary.
I should point out that I'm not a doctor and have no medical training whatsoever.
You're so much better than a doctor, you're a provider of optimism, a means of self impetus.
A brief history if I may indulge! I was diagnosed with Aplastic anemia about seven years ago after an extensive often invasive full body investigation to rule out all possibilities, the bone marrow biopsy was the last port of call and showed that the cell capacity was about 5% so not great, however that said for the last 6 years my bone marrow has been able to accommodate enough for me to exist, but I have never felt well. What I wasn't aware of at the time was that my thyroid was border line at roughly the same time as when I had my diagnosis.
About this time last year, and at the time I put it down to the psychological effect of the pandemic, I started to feel even more horrible than normal, and at the time I started to exhibit signs that my platelets were low and I was advised erroneously-that's another story- to take myself to A&E, were fortunately and eventually I was able to see a hematologist who was visiting the hospital that day and who had time on her hands to undertake some more investigations and one of which was my thyroid function, from which is where I am today!
I have over the last 6mouths, progressively I have felt so much worse, joint and muscle pains pretty much all over my body, my energy levels are non existent, brain fog, dry chapped skin big puffy face, all the general associated attributes. Great, I wish now I just had the aplastic anemia!
I guess you've heard all this stuff before, so sorry about that, but it's good to get it out there so to speak, I think the most arduous part of having these symptoms is that there not looked at in the same way as heart conditions or cancers which are in themselves life altering, but that said I know numerous friends relatives that got through and living a fulfilling existence, were as me, and you no doubt, plus thousands others are wading through mud on a daily basis just wishing the day away and those you meet, just don't get it, the common comment is" well it could be worse" Helpful!
Now then supplements I take are as follows
1x vitamin C 1000
1x vitamin b complex-ingenus
1x vitamin d5000iu k2 100mcg
1x zing 15mg selenium 200mcg
1x magnesium glycinate 500
1x ginseng
I every now and again have shot of B12
I have in the last month been taking 1x thyroid granular and adrenal granular.
Again thank you for your interest, I would be so grateful for any input you may be able to provide given the demonstrable knowledge you obviously have.
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It's going to be a tough week next week
Is this as good as it gets?
Is 10 mcg of Liothyronine as good as a placibo?
Is it normal to feel this awful?
