Good morning lovely people. I am struggling with my thyroid and unfortunately doctors have not been of much help. I have Graves’ disease, had radio iodine treatment about 10 years ago. Currently have an enlarged thyroid, high blood pressure, handfuls of hair falling off, waves of unbearable heat, unable to sleep and tight chest. Now i have been pit on propalonol but i am very confused, first i dont feel better at all. Worried im having a thyroid storm. Can someone kindly help me look at these blood tests and give me some insight ?
thank you so much
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Zee1973
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Have you ever needed replacement between having RAI & now?
Your FT4 is in range. What are your other levels like? Is your TSH low. You may be having hyper symptoms from high FT3. Those 3 markers need to measured together.
Might be worth having a TRab & TSI antibodies re tested from your Graves diagnosis, this will show if there are Graves antibodies stimulating your thyroid.
Most become hypothyroid after treatment but the information advises 10% need a repeat dose. We don’t hear from many saying they need further treatments but when we do it’s usually around 6 months of the previous treatment. So the long gap since treatment is unusual.
Usually doctors go by TSH & as yours is low doctors should be investigating & potentially treating to bring high FT4 & FT3 down.
It might be you have history of low TSH from when you were hyper. If you were hyper for a prolonged time the TSH can remain low no matter what your levels are doing including FT4 & FT3 being low / hypothyroid.
You have Fibromyalgia & this can be associated with low FT3 has that been tested around that diagnosis?
I think if doctors are not helping you need to organise a blood test privately. You can then take the information to obligate them treat / undertake correct tests.
You order a postal kit. Take fingerprick sample, which can be done DIY at home.
Medichecks might be good option (thyroid advanced) offers function (TSH, FT4 & FT3) CPR - inflammation marker. TG & TPO antibodies. Key nutrients folate, ferritin, B12 & Ferritin.
There is option for TRab but it’s an expensive test there’ll be an additional fee for venous draw (can’t be by finger prick). So I’d leave that for now & focus of seeing where your levels really are & of your nutrients can be optimised.
Please add vitamin D & B12, being in range is not same as optimal. Ferritin is slight under optimal, what is your diet like? Veggie? Vegan?
Do you currently take supplements.
Also - a thyroid storm becomes a concern with very high, untreated FT4 / FT3. Usually a separate trauma or illness occurs & a thyroid storm causes a very obvious medical emergency. I wouldn’t be concerned as your FT4 isn’t over range & if your FT3 is high, thyroid storms are very rare.
Thank you, this makes a lot of sense. I have also recently been diagnosed with Rheumatology Arthrites but not sure if it would impact these results. I eat meat, not vegan or veggie. Follow a Mediterranean diet, cook my meals, am really careful.. might be the absorption that is not appropriate, maybe ?
Absorption a common issue with low thyroid (due to low stomach acid) and autoimmune issues (both Hashimoto’s & Graves) have a common association with gluten allergy / intolerance.
Have you ever had celiac screen?
Vitamin D looks good. Can you please add range for folate & B12.
Did you get any blood tests from your doctor 3 years ago as suggested - as we might find some clues in these - while we wait for current readings and ranges.
I had RAI thyroid ablation for Graves in 2005 and immediately prescribed T4 x 100 mcg daily thyroid hormone replacement.
I read the dose of RAI not as exacting as one might think and that managing primary hypothyroidism is more difficult to treat and we must be dosed and monitored on our Free T3 and Free T4 readings and not a TSH seen in isolation.
Though totally understand the situation in primary care and I too fell foul of being dosed and monitored on just a TSH blood test for years until i was too unwell not to start reading up myself and challenge my treatment 10 years post the RAI treatment.
I too had terrible brain fog and am dyslexic and have 4 lined exercise books full my writing out what I needed to remember and learn in order to get better.
Symptoms similar to those of fibromyalgia and / or Sjogren's Syndrome can be triggered post RAI thyroid ablation and weight gain seems to be a ' given ' .
We really do need to see a full thyroid panel to include the vitamins and minerals as already detailed and between them I think Medichecks and Blue Horizon cover the country offering a nurse home visit service to draw your blood which I find the least stressful option- though at an extra cost.
I now just order a yearly full thyroid blood test - sometimes referred to as a Advanced Thyroid Blood test and around 10/11 results to include a TSH, T3, T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D.
I now know I need my ferritin up at around 100 : folate around 20 : Active B12 75 ++ ( serum B12 500 ++ ) and vitamin D up at around 100 :
Your T4 is ' in range ' so I doubt your T3 is over range - as it is too high a level of T3 that causes hyper type symptoms just as too low a level of T3 causes the symptoms of hypothyroidism.
If you go into Thyroid UK the charity who supports this forum there is a list of both hyper and hypo symptoms and it is not clear cut with many symptoms sitting in both debilitating health issues.
You might like to read around on Elaine Moore's website and books -
Elaine went through RAI at the turn of the century and with no improvement in her health started researching this poorly understood and badly treated Auto Immune disease herself and has her own Stateside forum, much like our forum, and a World wide following and a leading authority on Graves Disease.
I know it's hard when you feel to can't retain information but it does actually sink in and it's a bit like a jigsaw with no picture or corners - but it does take shape and once you get a corner or two out the rest falls into place.
Another book that helped me is Your Thyroid and How To Keep It Healthy written by a doctor to help patients advocate for themselves - Dr Barry Durrant- Peatfield writes in an easily understood manner and I still refer to his chapters some 7 years on from when I first fell into this forum researching my own health issues.
We do now have some research - if doesn't make for god reading and really do wonder why this toxic substance is still a first and sometimes only treatment offered to patients :-
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