I’ve had RAI August 2017. Was ok until June 2018. Then went under active reading of 8. Endo started me on 50mg levothyroxine. Well gradually I have started to feel ill. My joints ache my energy has upped and gone. I feel emosh for no reason and I don’t know what to eat as I think food makes me worse. Spoke to Endo nurse and he said my levels are within normal range 2.something(I can’t remember) and suggested I up the Levo every other day 75mg. And also said ‘it’s not your thyroid as it’s in normal limits’. Also the other Endo I saw told me when I was over active it’s not your thyroid and said I was depressed! and when I was referred for RAI the Endo at oxford did some tests my vit d was depleted. I felt so much better on the vit d. Could it be that again? Our hospital won’t recheck those levels so I have no idea. Also I’ve read if I’m depleted in calcium and iron it won’t let the Levo absorb. I need some serious help to get me feeling like normal. I can’t carry on like this. Who do I need to speak to on here to get bloods taken and see what I’m lacking?
Thank you in advance melanie x
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Owleyes
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You can arrange your own tests through one of our recommended labs - Medichecks or Blue Horizon.
If you were deficient in Vit D and supplemented, then stopped supplementing, then your level will have dropped again.
It will be your TSH that is 2.something and that is too high for a treated hypo patient and the endo nurse was right to suggest an increase in your dose of Levo.
What you really need is a full thyroid panel - TSH, FT4 and FT3. Unfortunately, it's often TSH only that gets tested and that doesn't give the full picture.
I would suggest that you do a full thyroid/vitamin and mineral test with Medichecks and they've had it on offer all this month at a discount of £20. Today is the last day if you can manage to order it now, tomorrow the price goes back up. The Thyroid Check UltraVit will test
It can be done as a fingerprick test (2 x vials of blood each requiring 0.8ml) or you can arrange a venous blood draw at extra cost.
Please wait to do the test when 6 weeks since your dose increase has passed. You wont get a true picure of your thyroid hormone levels if you do it any sooner than that.
Do the test as early as possible in the morning, no later than 9am, and delay breakfast until after the test. You can have water but no tea, coffee, milk, etc, until afterwards. This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. [These are patient to patient tips which we don't discuss with doctors or phlebotomists.]
If you take a Biotin supplement or a B Complex containing Biotin (B7) then leave it off for 3-5 days as it can give false results. Also, if you take iron supplements or eat liver, black pudding, etc, leave that off for a week before the test.
If you post your new results, including reference ranges, members will comment and make any suggestions to help you.
Come back with a new post once you have the results and members can advise on what supplements you need to improve low vitamin levels
Likely to need dose increase in Levothyroxine. You are only on low dose. Most patients eventually need somewhere between 100mcg and 200mcg, but we have to increase slowly, retesting 6-8 weeks after each 25mcg dose increase.
Often essential to continue regular vitamin supplement supplements at same time. Otherwise TSH tends to be low and that's all GP's consider (incorrectly)
But full private testing is first step to see where your levels are
Any Endo who tells a hypothyroid patient who has had RAI to knock out their thyroid gland that their blood results are 'normal' should not be treating patients. Anyone of the professionals who stated the following shouldn't either. We have found that most treat patients who have adysfunctional thyroid gland the same way.
The Professionals are seriously under-trained and know absolutely nothing about what the thyroid gland does in our body - particularly when it has been removed. To insist that someone with no gland is fine because TSH is 'normal' is wrong and they should learn more about relieving crippling symptoms.
Many patients seem to do well on levothyroxine but I doubt they have no thyroid gland at all and they are not on this forum.
The aim, eventually, is a TSH of 1 or lower and a Free T4 and Free T3 in the upper part of the ranges. We used never to have blood tests as diagnosis was only upon the clinical symptoms so blood tests seemed easy - like turning a knob on the oven - get it to the right level and everything is 'normal' and the only thing they forgot is the patient who has to have 'optimal' rather than 'normal'.
SeasideSusie has given her usual excellent advice and follow it and you will begin to feel better. It does take a while however, but slow steps are fine. I shall give you a couple of links.
Thank you all so much. It’s really helpful. I have purchased the bloods now. Will wait 6/52 then do them.
I don’t understand how a Endo consultant can tell me there is nothing wrong with me try and stick me on a antidepressant when all she needed to do was listen to me about symptoms I’m pretty sure joint pain isn’t me being depressed, I had to ring my gp when I came out to ask if I was depressed! He laughed asked me was I walking the dog every day was I having my hair cut and coloured still and was i shopping like there was no tomorrow all answered yes! As soon as I saw the Endo consultant in oxford and said how I felt he did my bloods prior to RAI And found out I was vit d depleted. Was back to ‘normal’ in a month. So hopefully after these bloods and help from you lifesavers I’ll be back to ‘normal’ (fingers crossed) Scared skinny about the next 6/52 feeling like this though. Have bought gluten free grub to try and help. There’s another minefield!
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