I had Graves Disease and Hyperthyroid -was treated with Radioactive Iodine and was given I131 - 600 ...
3 months later I was diagnosed Hypothyroidism and put on Levothyroxine 100.
I posted a short time ago that my TSH was 2.90 and as it was in the normal range no other results were provided or gauged. Thank you for making me go back to doctors...
The results I have been given 6 weeks later is TSH 9 and T4 11 so TSH is now well out of range ... but T4 normal .. confused both me and doctor. I had been taking Levo 100 daily as prescribed and frankly I was surprised the T4 was in range and the TSH had increased. Now I am on Levo 100 and 125 alternate days to see if this brings the TSH into line. The really odd thing is that the results indicate more Hypo than Hyper but I have More Hyper symptoms than Hypo!
Thoughts please ..
oh the good news is that the doc I saw this time also has a thyroid issue so some empathy there but she didn’t of course discuss herself and I couldn’t ask. She did ask if I had taken tabs before test and as I wanted a like for like test I said I had but was informed by this forum to take after test ... she said that was correct but when I spoke to another doc in the practice it was indicated it would make no difference ... so next test I am definitely waiting until after the bloods to take Levo - thanks group.
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Graves1234
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I had RAI too and have experience of being hyper and hypo. I can tell you that many of the symptoms I experienced were similar. I would not be able to tell from symptoms alone whether I was over or undermedicated.
TSH and ft4 alone are not giving a true picture of what is going on. You need to get FT3 measured in the same blood draw. For years I was ill but had results in range that was until my ft3 was measured. It was too low - I was a poor converter.
So maybe the tsh is responding to the lack of FT3. Maybe you need to think about adding t3 rather than levo.
Can you add the ranges on FT4 result. It looks very low
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
You will need bloods retested 6-8 weeks after each dose increase in Levothyroxine
That's a tiny dose increase. You are likely to need further increase (s)
Just testing TSH and FT4 is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves' disease
Ask GP to test vitamin levels now
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Most patients on Levothyroxine after Graves will need to regularly retest vitamin levels and often need to supplement vitamins to maintain optimal levels
Strictly gluten free diet helps many too
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
Come back with new post once you get vitamin results and when had thyroid levels retested after 6-8 weeks on higher dose
High TSH suggests underreplacement or poor compliance.
This is what was put on my record ..
2 years ago my TSH was 45 which was after 3 months of the Radioactive Iodine ... I didn’t feel well at all then! But again the doctor thought I would have felt awful but frankly although I had symptoms I could function in the main just really tired etc
I am not poor compliance as I was medicating the 100 as prescribed
My encrinologist prior to sending me back to doctors to manage me said my levels should be best kept in the lower half of the ranges.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI
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