I had an overactive thyroid gland treated with Radioactive Iodine in February 1990. I gained two and half stone during the three years which followed. My doctor flatly refused the idea that my thyroid had become underactive, while my T4 slowly plummeted to the bottom of the range, because my TSH did not increase at all.
Eventually I paid to see an endocrinologist privately and he started me on Levothyroxine - without waiting for a blood result because of my bald patches of scalp (GP diagnosed this ugly hair loss as alopecia), weight gain and flaking dry skin.
Since then I've had a 30 year battle to get insufficient Levo because I just don't produce TSH.
Recently researching why this might be, (yet another GP concerned about my 0.1 TSH wants me to contact private endo to lower Armour, while my T4 is currently an abysmal 11 in a range of 9-22 , and I'm feeling very low and cold) I've read that the iodine radiotherapy may have damaged my pituitary function (?)
I've asked for my pituitary hormones to be tested. My GP was clearly angry and became very abrupt when I said that I had contacted the helpline at pituitary.org.uk, where they advise T4 levels to be at least middle of the range and I asked for my pituitary function tested - as 30 years of regular medicine reduction and deprivation have already proven that my TSH cannot be spiked without severe illness
So I have my blood test form for pituitary function, but she was clearly not best pleased and I got absolutely no advice to go with it.
Does it matter please, what time of day I have my blood test? ..... which is for Cortisol, prolactin, FSH, LH, Urea and electrolytes (inc GFRe), and Renin:Aldosterone profile
I'm currently taking NutriAdvanced Adrenal Concentrate - should I stop this before testing?
Thank you to everyone who takes the time to contribute on here. I was lost before I found you.
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abirose311
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A blood test for cortisol needs to be done between 8-9am, you don't need to fast but you will need to stop the adrenal stuff for at least a week prior to the blood test as it will mess up any results. Make sure you get copies of your results as GP's rarely understand them. The range for cortisol is between 150-550nmol/Ls (depending on lab range) however cortisol should be at it's highest first thing in the morning & then drops during the day, so a morning cortisol should be between 350-550nmol/Ls. The oestrogen contraceptive pill, HRT & Biotin found in some supplements can give an elevated cortisol results so should be stopped for 6 weeks prior to any further testing.
I had an overactive thyroid gland treated with Radioactive Iodine in February 1990.
So, did you have Graves confirmed by antibody tests: TRAB and/or TSI? If so, it could be that that is stopping your TSH from rising, rather than a problem with the pituitary itself - the HPT axis has been down-regulated by the Graves. In which case, the pituitary function tests might not show anything positive.
Your GP should get over herself! She obviously doesn't know that much about any of it, so don't take any nonsense from her.
In 1989 had an enlarged goiter and thyrotoxicosis. Thyroid gland was scanned and didn't show any malignancy. The word Graves was never mentioned to me and I don't believe I had those tests but lots of bloods were taken. I was put on propranolol as I was told I was at risk of cardiac arrest and given a choice of carbimazole or radiotherapy. I chose the latter as I was told it would be a more rapid recovery and that the subsequent underactive gland would be very easy to treat!
Yes, they always say that. It's just another one of those little lies they tell patients to coerce them into doing what's easiest for the doctor, not the patient.
Anyway, there's always the possibility that it was Graves, then, so as I said, the pituitary function tests might not show anything concrete. In which case, be ready for your GP's triumphant reaction!
LOL I will! However I suspect I do have a problem with low cortisol, or what Paul Robinson calls hypocortisolism. I can tick more than half the symptoms but they are also thyroid symptoms. I had an anaphylactic reaction to an antibiotic this month and was taken to hospital with tachycardia and respiratory failure. I feel as if I've come apart at the seams from the stress of it, hair falling out by the handful, tearful, nervy, jumping out of my skin at the slightest thing.
If your on Armour (NDT) it’s typical to have very low TSH as NDT contains T3
On NDT it’s also common to have low Ft4
Most important result is always Ft3
How much Armour are you currently taking
Bloods should be retested as early as possible in morning before eating or drinking anything other than water and last 1/2 or 1/3rd of daily NDT taken 8-12 hours before test
Essential to regularly retest vitamin D, folate, ferritin and B12 too
Please add most recent results and ranges
Have you had coeliac blood test done
Are you on strictly gluten free diet
After RAI for Graves or with Hashimoto’s, these are both autoimmune
Strictly gluten free diet often helps or is essential with many autoimmune disease
I've been gluten free since 2016, which is also the year I switched to NDT.
I take two grains of Armour in the morning and 12.5mcg leothyronine sodium in the evening or before bed
My endo did say to take 2.5 grains Armour but the extra half a grain is just not in my budget when I can buy T3 cheaply.
My T3 was 4 in the middle of the range.
I have asked the doctor to test vitamins as it hasn't been done for 6 months but she hasn't included them on my blood test request.
I take oral spray of D and B12, Folic Acid on a daily basis, Magnesium Citrate, Under the tongue Iron with Vit C a couple of times a week.
I'm just recovering from anaphylaxic shock from antibiotics and the A&E doc suggested on 2nd August that I was slightly over-medicated. I cut my meds in half for a couple of days because my heart was tripping the light fantastic and now feel pretty awful.
Thank you for the links SlowDragon, and your time, I became vegetarian xmas day 1996. In 2008, I began eating chicken. I started eating red meat again 4 years ago, 2017, about once a week.
Being hyper for any reason especially if for a prolonged time down regulates the TSH. The technical term being hypothalamus–pituitary–thyroid (HPT) axis.
This means the TSH is not only becomes slower to respond but can stay disproportionately low when in a healthily feedback function it would rise.
I had mildly elevated levels from a nodule for over 4 years. I’ve been euthyroid for nearly 3 years now with taking carbimazole but the TSH I’ve never risen into range.
Do you remember if it took a while to be diagnosed, and how long were you on carbimazole?
I paid to see a private endo and was treated very quickly, within a month. They offered me carbimazole OR radiotherapy and I opted for the latter, so no carbimazole
It's taken me 20years to get my pituitary failure identified. It started with my TSH failing and its now completely zero but Endos refused to believe that this could happen and I nearly died with myxoedema before I started treatment with T3. My cortisol has now failed but eventually I demanded a referral to a pituitary specialist who has at long last confirmed that my pituitary is failing probably as a result of a head injury many years ago. My sex hormones are also gone, and they are testing the rest of the hormones. It's been a long hard battle with Endos who don't seem to know or care about pituitary failure or the possible effects of head injuries. My advice is to find a pituitary specialist recommended by the pituitary foundation as they are much more knowledgeable. Heather
It is my understanding that after a thyroidectomy or RAI thyroid ablation the HPT axis is broken as you no longer have the Thyroid and the feedback loop is therefore not complete any longer.
It is therefore imperative to be dosed and monitored on your T3 and T4 blood tests and not the TSH - but in primary care a TSH is likely all you get, irrespective of your medical history.
Having failed to get any treatment options prescribed through the NHS other than T4 - Levothyroxine I started self medicating around 3 years ago.
It took me a good few years building myself back up, details on my profile page, and I now find since switching to NDT my T3 and T4 results have swopped places :
My T3 now comes in at around 90/110 % and my T4 at around 25/30% through the ranges and I have no symptom of overmedication and if anything run myself slightly under, as with lingering Graves post RAI thyroid ablation in 2005.
I believe with NDT you can run with a lower T4 than when on synthetics -
Though read some people add in a little synthetic T3 or T4 to find that elusive " sweet spot " .
I believe a low T4 is a less important than achieving a higher T3 and it's just how NDT works with the T3 taking priority .
You still need to be converting and a high T4 whilst on NDT - I believe shows poor conversion and would to look for reasons why I didn't feel as good, on the same dose, as I did previously.
Conversion can be compromised by low vitamins and minerals, chronic pain, inflammation, any psychological stress ( emotional or physical ) , dieting, depression and ageing.
As we age, and that's one area we haven't any control over, our needs will change and presume dose adjustments a necessary part of the overall equation.
Yes I had a shock at the beginning of August. Anaphylaxis caused by nasty antibiotic called Nitrofurantoin which contains a yellow food colouring banned in the US and Canada!
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