Hi Dear All,I have been suffering since end 2020 with exaustion, joint pain, high colesterol, insomnia but sometimes I can sleep non stop, dry skin, feeling cold, sometimes hot. I have been complain with my GP but they said my blood results was normal. So in may this year I got fedup and went to my home country and was diagnosed with hyperthyroidism I come back with cabimazole and a letter from the doctor in my home country ( Brazil) asking the doctors here to keep investigating for graves desease.
When I come back some symptoms had improved others no so I got in touch with my GP and they finally sent me to a endocrinologist at St George hospital.
He sent me for MRI, scan with uptake knect and more blood test. After the blood test he ask me to stop cabimazole because the TSH was normal but TPO come back positive. Since 01 October I am off cabimazole and the symptoms are worse today I couldn't get off my bed. I am unable to work. I don't have any energy. I sent an email to the doctor and no answer. Anyone know if I can change to a better endocrinologist? I am desesperate. Or should I just got back to cabimazole. If anyone knows a way to help me I will be more than greatful.
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anaulke
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So we can offer better advice, can you share your blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
When GPS say ‘normal’ or ‘within range’ this may be far from optimal, so that’s why it’s important to ask for print outs of any test results.
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
It’s possible the hyper levels were a temporary rise in levels before a drop.
This is common with Hashimoto’s (autoimmune thyroiditis) where your immune system is attacking your thyroid. The damage causes hormones to be released but over time the function is compromised & levels become low & need to be replaced.
Graves causes continuous Hyper.
TSH can be unreliable it’s not a thyroid hormone it’s a pituitary hormone which signal your thyroid.
You need to look at FT4 & FT3 the thyroid hormones.
High TPO antibodies can appear with both Hashimoto’s and Graves.
Do you know if TSI or TRab antibodies were tested as these are high with Graves, as carbimazole has been stopped it’s more likely your levels are low.
I would try to get a copy of the scan report and a copy of the blood tests you’ve had done (with lab range).
This is what I have now. I have to pick up the MRI and Scan but I don't have energy to leave home and go to the hospital. I am about to restart my cabimazole without to feel better.
14/ 09 Calcium 2.32
Adjusted calcium level 2.42
Inorganic phosphate level 0.97
Haemoglobin A1 c level *32.0
Creatinine level 72
Free T4 17.4- 17.2
TSH 0.47
Cortisol *208
FSH 6.7
LH *5.4
Oestradiol 254
Prolactin 441
IGF- 1 18.6
16/10
TSH 0.81
T4 16.9
T3 5.3
He didn't put the quantity only says she has got THS positive receptor antibodies.
The Dr. secretary sent in that format they sent me the results on 14/09 and the results on 16/10 he sent a letter stating the results, he didn't sent the results.
What has doctor said? Have they advised next investigations or a treatment plan?
The MRI on pituitary reports a cyst / microadenoma. These can affect the function of what the pituitary produces so this may affect TSH production. They can either over function or not function.
Have you had other pituitary hormones tested?
From the thyroid uptake scan report show function with in normal limits. No nodules showing hyper function.
homogenous pattern means it’s the same uptake throughout, but heterogeneity means the image shows a patchy pattern. This could be nodules, which is suggested (nodular gland).
Nodular appearance can also be present with thyroid Autoimmune. TPO & TG antibodies should also be tested.
Doctors may want to test pituitary hormones to see if others are affected. FT4 & FT3 needs to monitored. Thyroid levels could increase or decrease & thyroid treatment should based on what they are doing. Replacement of level become low & antithyroid medication should levels continuously rise.
Thank you to take your time. I sent 2 emails this week and the doctor didn't answer.He got the results since the 4th November I think he should at least give me a call. Do you know if I can ask to change to another doctor? What can I do in that case? I am not feeling well. This doctor is a specialist endo at St. George Hospital.
Might be worth phoning the doctors secretary. Doctor may be away or working in other department, or is in process of discussing your case. Often they write to GP when organising the next stage or appointment.
Also let both your GP & endocrinologist know your symptoms are worsening / changing.
You should be contacted when asking for update but many find they are left waiting. The next doctor may be the same at not updating you.
Your TPO & TG antibodies are negative although these antibodies can fluctuate.
TRab is a different antibody.
As you stopped taking carbimazole the beginning of October? You should be clear from the medication affecting levels. You don’t need any thyroid treatment based in these results (neither resume carbimazole and you don’t need replacement either).
Were key nutrients tested ? Folate, ferritin, B12 & vitamin D. Your cortisol has been tested in comment above. Do you have timing & range?
Hi Dear, I don't have the others exams yet I will look for that too. Because I don't think the doctor will look for anything else. No answer from hospital.Thank you so much PurpleNails
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