I've been on NDT for about 6 years and had underactive thyroid for many before that but chose not to take thyroxine until my symptoms got too bad. I recently had a RA assessment, which was negative, it's just osteo A, but the clinician I saw told me I was hyperthyroid not hypo as my TSH has been below range for a long time. She couldn't recommend on dose as she only deals with levothyroxine but told me I need to reduce my dose. My TSH was within normal range for the first 5 years of taking NDT but has dropped below for the last year or so. I don't know what to do now - reduce what I'm taking, try taking levothyroxine instead as it can be monitored by the Dr. I'm aware TSH as an indicator is controversial. Any advice would be gratefully received.
Here are my last test results:
Serum free T4 12.8 (12 - 22) Before taking NDT this was around 8
Serum free triiodothyronine level 4.5 (3.1 - 6.8)
Serum TSH 0.03 (0.27-4.2)
I am taking 90mcg Thiroyd from greater pharma but have have just reduced to 75mcg to see if it makes a difference. Before that I was on a different NDT from Canada but it became unavailable.
Thank you for any suggestions you can make!
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ArtyLouise
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Serum free T4 12.8 (12 - 22) Before taking NDT this was around 8
Serum free triiodothyronine level 4.5 (3.1 - 6.8)
Serum TSH 0.03 (0.27-4.2)
First of all, when you are hypOthyroid, it's a physical impossibility for your thyroid to suddenly heal itself and then go overactive. You can be overmedicated and if so this would be indicated by FT3 being over range.
Your TSH is below range, which is typical when taking NDT, your FT4 is low in range which again is typical when taking NDT. Your FT3 is only 38% through range. If anything, you are undermedicated with those results and if symptomatic there is plenty of room for an increase in dose to wherever you feel well providing your FT3 stays in range.
Thyroid function tests were designed for people on Levo only. It's not appropriate to dose by TSH in any event, and particularly not when taking NDT.
You haven't actually said how you feel. Did you feel overmedicated with those results? And how do you feel now that you've reduced your dose of NDT?
Thank you. No I wasn't feeling overmedicated though I often feel wired, despite fatigue so it's sometimes hard to know. I think the wired feeling is more an adrenal issue and I'm very slim, never been overweight even when everything else was very sluggish and my levels were way below range. I've upped the dose to what I was on before as I was getting really constipated, and I feel ok energy wise right now. How I feel seems to go in months at a time - months of feeling ok and months of feeling completely drained and everything is an effort. Confusing. Thanks again, this forum is so helpful as the right medical advice is hard to find. Louise
Blood tests were introduced along with levothyroxine. Therefore if we take any other thyroid hormones i.e. NDT or add T3 to T4 the results cannot correlate.
Concentrate on your clinical symptoms and the relief of them. That's the aim of thyroid hormone replacements. A TSH of 1 or lower, with a Free T4 and Free T3 in the upper part of the ranges.
TSH means thyroid stimulating hormone and it is from the pituitary gland and it rises when the thyroid gland is failing in an attemp to flag up more hormones.
You are not over-medicated (and certainly not hyper, because you are hypo, and can never therefore become hyper!). In fact, you are under-medicated because your FT3 is not even mid-range. You are not over-medicated until your FT3 is well over-range.
Obviously, this clinician, whoever she was, knows very little about thyroid, and should not be advising patients without that knowledge. Advising someone with your levels to reduce their dose will just make them more hypo, which is even more dangerous for bones that being over-medicated. But, even endos don't understand that the effects on the body of excess exogenous hormone are not the same as the effects of excess endogenous hormone - as in Grave's.
TSH as an indicator is not controversial among people who understand thyroid (which rules out most doctors!). Thyroid Stimulating Hormone. It's a pituitary hormone, not a thyroid hormone. When the pituitary senses that there is not enough thyroid hormone in the blood, it produces TSH to stimulate the thyroid to make more hormone. When levels are high enough, the production of TSH drops because it's not needed anymore. The pituitary reacts to levels of both T4 and T3, and TSH also stimulates the conversion of T4 to T3, so when you are actually taking T3 along with your T4, there is even less need for TSH. So, the pituitary more or less stops making it. BECAUSE you don't need it any more. If TSH were essential for bones, the pituitary would continue making it. The fact that it doesn't has to tell us something.
There isn't a link with bones, that's what I'm saying. But, doctors believe there is. Bones are affected by FT3 levels, not TSH. But, as the TSH is connected to the FT3, doctors get confused! They often put the cart before the horse - as I love to say! lol
There are many reasons for developing osteopenia. One of them could be low T3. It could be nutritional deficiencies - which hypos usually have. And, I'm not just talking about calcium. Have you had your vit D, vit B12, folate and ferritin tested? Some people even doubt its existence, just another made-up disease, confusing getting older with being ill. At 55 you can't expect to have the bones of a 20 year-old, and that's what they're comparing you to.
That's fine, I had eating disorders, no periods hence low bone density, it's just you mentioned bones so I thought there was a thyroid link...no worries!!
I said: "If TSH were essential for bones, the pituitary would continue making it." Meaning that TSH isn't essential for bones, but doctors believe it is, and that's why they don't like a suppressed TSH.
You need a dose increase, if anything, not a reduction as your thyroid hormones are far too low. Your Free T4 is right at the bottom of the range and free t3 not even mid range. Mot people need both at the top quarter of their ranges to feel well. Once you are on meds, TSH doesn't really matter. The arthritis specialist you saw probably knows no more about thyroids than the average GP, which just over zero! You can't easily compare bloods on NDT with those on T4 only
Thank you to everyone who so clearly explained what is going on with my results. I now understand the mechanics of it all - that is so helpful. I will revert back to the dose I was taking and rely more on how I feel. It's a bit confusing because there often seems to be a combination of fatigue + feeling wired, which I think is more about adrenal issues, but I've never had that side of things checked. Very best wishes, Louise
Louise, if you wanted to you could try an increase of a quarter or half grain and see if you get any improvement in the weird feeling.
In general, people feel well with their freeT3 high in range, in the top third. Yours is quite low, well below halfway up the range. Technically, this makes you quite undermedicated. Symptoms are more important, though, so if you're feeling completely fine there's no need to adjust anything.
If you want to try a little increase, you've always got the option to drop back to where you are now if it doesn't improve anything. Stick for 6 weeks to allow it to settle in, and then assess where you are, get a full thyroid panel blood test if you can, and decide if you want to stay where you are, increase again, or drop back.
Thank you that's helpful. My symptoms come and go for several months at a time and I think I've always been at the low end of the range. Feeling ok now so have increased back to what I was on, and will use symptoms as more of a guide than doctors advice! Thank you, Louise
Its worth having a think and maybe write notes about when you feel good and bad.
Some people take a little extra through the Winter because hypothyroid tends to be worse in the Winter.
Or if the amount of energy you use varies over the months, like working or exercising or doing extra physical tasks, or even extra stress and emotion. These use up your T3 faster, and the dose you feel well on will be tailored to your weight, muscle mass and activity level. If you start doing more you'll need a slightly higher dose.
Or it might just be random. If you've got Hashimoto's that can cause some instability because the antibodies go up and down.
Another possibility is gluten. Many people with Hashimoto's do better with no gluten, and a smaller number do better with no dairy.
Most people who are hypothyroid have Hashimoto's, or auto-immune hypothyroid, so you may not have been told if you have it or not. But usually if you have a different reason for being hypothyroid you will know about it because it will be something more complicate. So if you don't know, its probably Hashi's.
It you have one single positive antibody test for anti thyroglobulin or anti thyroid peroxidase (known by many different abbreviations in blood tests) then that means you have Hashimoto's. This is a test that can have false negatives (because sometimes the antibody count will drop low), but not false negatives.
Something like 99% of people who are long term hypothyroid have Hashimoto's, because its quite difficult to become hypothyroid any other way. But doctors often don't tell people because they don't think it's important
Ok thanks. I was checked for Hashi a few year's back and was ok. I don't know if that can change. The positive antibody test I had was for Ro60 in connection with possible Rhuematoid arthritus, but it turns out, thankfully not to be RA, just osteoA. They say there is no significant correlation or significance and some people can have this positive test without illness.
Oh, sorry, I assumed you were talking about test for Hashimoto's. With Hashi's testing its the opposite. A negative test doesn't mean anything, because it can be false. Whereas any positive test means you have it.
Maybe the symptoms coming and going for several months at a time are because in the summer months we may need less medication than in the winter months and by not adjusting you can feel the difference?...either way right now off your bloods you need an increase .
Do people find in general they need more in the winter? My ups and downs haven't correlated with the seasons but I have had the menopause and a few stress factors which I think both really contribute to the symptoms. At the moment I feel quite well, and I'm very grateful to now be clearer about what my blood tests mean, so I can monitor it along with symptoms.
It’s not something I do but I’ve come across quite a few who do have a little increase in winter and drop in summer .....the main thing is if you are feeling well then carry on doing what you’ve been doing .Sress/menopause certainly factor ...and certainly not pleasant!
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