I am on 125g for Hypothyroid. I had radio active iodine about 16 years ago for an over active Thyroid.

[Waverley]

Had my blood test last week Doctor says it was normal?! I am having Dizzy turns feeling faint out walking the dog. also I have blood in the urine which only shows up in the little test, Doctor getting me hospital appointment. I have loads of symptoms in your list so how can my Thyroid test be OK?????

[marram]

Waverley, If you are suffering symptoms, then you are not being optimally treated. Do you have your results? I suspect not, or the doctor would not be telling you 'normal'.

Unfortunately as you have probably worked out, doctors today are so blinkered that they seem to have lost the ability to see the obvious suffering right in from of them.

Was you thyroid completely destroyed by the RAI? If so, then 125 does not sound like an adequate dose, but without the actual test results and the ranges it is not possible to say definitely.

When you have these dizzy turns, do you feel your heart beating irregularly or rapidly?

Blood in the urine sounds as if you have some sort of an infection, do you have pain with it? Is the appointment for this?

Sorry that there are more questions than answers here, but it is difficult to know without such questions. please do see if you can get your blood test results, perhaps you could ask the receptionist. It would be good to pinpoint exactly what is happening with the meds, because not enough thyroxine can mean that you are prone to infections.

Look forward to hearing from you.

Marie XX

[Waverley in reply to marram]

I am getting an appointment at Hospital for the Urine. I have had no infection just this blood shows up in test. Will get back to Doctor. Thanks.

[Jackie]

Hi I suspect the GP only tested for TSH, or TSH and T4, essential to have a Free T3 test too for the correct treatment. Past now not really relevant as you need treatment on how you are now. Make sure you have had the other relevant autoimmune and hormonal tests, antibodies, vit D, if low corrected calcium, treatment ideally Endo, or if not GP, Diabetes but sounds to me more like Vit B12 + foliates or iron/ferritn. Both need to be quite high in range. Of course, with autoimmune thyroid disease you can get loads of other autoimmune diseases, I am thinking say of Menieres. However, see how the thyroid is properly and related issues. You may well need some T3 in addition to the Levo( t4). Make sure you have all bloods tests with the ranges as they vary.

Best wishes,

Jackie

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[Waverley in reply to Jackie]

Thanks taken note and will make appointment with Doctor.

[bantam12]

Hi

I had RAI about 13 years ago and as I only had half a thyroid it was completely killed off.

The dizziness is something I have been getting for a while now particularly when I'm out dog walking, so snap !

I have been taking 112.5mcg for a while now but latest test showed TSH was 0.09 so I have gone down to 100mcg and after only a week on that dose the dizziness has stopped. I am also severely vit D deficient 12nmol but at the moment not taking any supplements as they make me feel unwell so it's wasn't the deficiency causing the dizziness.

There can also be a degree of anxiety involved with dizziness, especially when you are out of your safe place ie walking the dog.

I would look at your results before getting bogged down with a load more tests, could be simple that you are slightly overmedicated like I was.

[vajra]

Hi W. I'm no expert, but based on the reported experience and commentary of others on a US thyroid support group some years ago there was a view that the results of RAI can be unpredictable over time - in terms of the hormone output of the remaining gland, and because it can become a focus for auto immune activity and the like.

There's in a situation like yours always the theoretical possibility of all sorts of other illness unrelated to thyroid, so if the symptoms persist or feel significant then it's probably important to get properly worked up by a competent doc.

Many of us have as the ladies say been down the route of (often for many years) being told we're 'normal' while experiencing and displaying obvious symptoms and consequences of hypothyroidism. Much less commonly hyperthyroidism. The problem is that as above the stock thyroid blood test (T4/TSH) will depite clear symptoms often return a within range or 'normal' result.

This may be because of stuff like e.g. we're either so low in the range that we actually are unwell, or because other downstream issues (potentially related to auto immune issues, gut dysfunction, vit and mineral deficiencies, toxicities and the like) may have arisen that mean that while we're making enough hormone to deliver normal blood values that we're not able to properly activate or use it.

As the ladies say many doctors seem to ignore symptoms and treat the stock blood tests as the absolute arbiter of thyroid health. Which widespread patient experience says they most certainly are not. It's no one size fits all magic bullet - even a cursory reading of thyroid patient experience or the research makes that much pretty clear.

If you're fairly clearly showing symptoms of hypothyroidism and are getting nowhere with a given doctor then in my experience the best bet is to quickly move on to another - it tends to become obvious pretty quickly if one is not open to taking a more holistic view of the situation.

On that note don't rule out the possibility that holistic treatments (like dietary improvements and supplementation) can be necessary and help considerably too.

I made the mistake of spending years trying to convince more than one that my symptoms were hypothyroid related but got nowhere - continued attempts to do so seem often just drive most deeper into the bunker. I struggled on, but ended up seriously ill in the end.

For whatever reason (and despite the reality that quite a lot may be going on in the background, and have been building up over quite some time) thyroid issues do seem to have a way of quite suddenly manifesting. One day we're OK, and the next we're not - perhaps because the body compensates in all sorts of ways initially, but that eventually the day comes when it can't cope any more.

Good luck with it all, and come back if you could use some more input - there's a lot of practical experience around here..

ian

[Waverley in reply to vajra]

Thanks, will get back to Doctor. I have ticked the boxes on the symptoms list. Five years ago Doctor in Cyprus said there wasn't much function left so now I don't think there is any. Now I have the list I don't feel like a Hypochondriac and its not my 'AGE'.

[vajra]

Many of us have had the 'it just a touch of depression, we all get it your age' line foisted on us in 'run along now' tones too M.

That's not to say that hypothyroidism doesn't lead to depression at times, but physical (and mental) hypothyroid symptoms (fatigue, spots, bloating, gut and bowel troubles, joint and muscle aches, low resistance to infections, brain fog, eyesight funnies, loss of motivation etc) generally prove to have a physical basis.

The bit that requires persistence, rationality/intelligence and clearly taking ownership of ourselves to naviagate through the maze is the often slow business of finding what's wrong, and getting to the often highly personal optimised regime that helps us most.

Although truth be told most of the barriers and delays arise from the way the system slows every step enormously, fails to accept clear feedback, erects all sorts of bureaucratic and dogmatic barriers, sends us down multiple time wasting cul de sacs - and makes ruinously expensive simple common sense stuff like cautiously trialling a treatment, or adjusting a dose of replacement hormone.

Maybe it's as you say simple as your thyroid has finally given up the ghost and is no longer producing enough hrmone? As well leading to a requirement for some/some more hormone that can also raise the need for T3 (the active form of the hormone) since up to that the thyroid (which produces T3 as well as T4) may well have been making what was needed.

One of the lessons i've learned is that feeling right requires a very finely tuned replacement dose and mix of hormone. (i had a thyroidectomy) Even quite small variations in dose can matter quite a lot, and your average GP is not much interested int his sort of fine tuning.

It's well worth as the ladies have said posting your blood test results and the associated reference ranges if you have them - there's a lot of expertise about in reading the numbers....

ian

[Waverley in reply to vajra]

don't know results, but booked to see my GP next week.

[KennyGee]

I had a thyroidectomy in 1969 and then RAI about 6 years ago. Following that I was on 125mg of Thyroxine but still had problems. I then did some research and took expert advice. Thyroxine (T4) is not much use if it does not convert to T3. Equally if the receptors are not functioning well this may not be taken up. Finally, the Adrenals need to be operating efficiently for things to happen. In fact my Adrenal Stress test showed that this was an issue. This is a complicated process which doctors try to solve with a one dimensional solution, T4. It may be that your unused T4 is creating toxicity and causing you to feel bad. Do your own research and don't rely on your GP. There is lots of help out there. Take control of your own health. I wish that I had done so earlier!

[Waverley]

Thanks, will see what happens with my GP next week.