Medichecks actually rang me this morning to make sure I go and see a doctor! Amazing.
Here are the results from last week in full, now:
TSH: 0.01 (was <0.05 on 9/4/21)
T4: 21.8 pmol/l [12-22] (was 34.7 on 9/4/21)
T3: 7.3 " [3.1 - 6.8] (was 14.8 on 9/4/21)
Numbers are significantly down though the itch has come back and my eyes are very uncomfortable. But the internal full body tremble has abated.
The endocrinologist rang. She said that TRaB was tested in April and was negative. I gave her the Medichecks results - which included low TPO and Tg. She thinks I have a toxic multinodular goitre based on the lack of antibodies, the blood tests, the past history and the fact that it was written down in front of her that the ultrasound scan I had in 2014 showed a multinodular goitre.
Funny, because last weekend I requested my medical notes and was refused.
I channelled Jeremy Paxman and eventually got the endo to agree that it would have been nice to have been told, seven years ago, that I had an MNG. At least I would have known what was happening to me when this started instead of thinking I was getting old and going mad. I am suspicious that there have been other episodes over the years which were hyperthyroid rather than bipolar or menopause. Psychosis is documented with hyperthyroid states.
She says she will order some scans - I presume this means an radioiodine uptake as she wants to find the hot nodule - bloods every month and that she would like to see me in 2 months time.
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Can they refuse to provide your notes? They should provide if you request them. On what ground are they refusing?
Your results are improving. Are you taking an anti thyroid medication ?
It is awful you were not informed. Something similar happen to me too. I had hyper readings, no one told me or followed up (I don’t think the hospital notified the GP either ). 4 years later my nodule was quite visible by this stage and a nurse arranged a scan. They did a fine needle biopsy at same appointment. Even then it was a further 7 months before it was realised the blood test wasn’t processed and I was incorrectly advised all reports back are ok & no further action.
It’s why tracking our own results is important step. The actual results & that the tests are processed and checked at all.
I have also had a radioactive iodine uptake scan, so I can tell you what you might expect. This specialised scan pertechnetate, is usually performed in nuclear medicine department.
Different Hospitals have different methods from what I learned and you should get a letter specifying their method. ie if you will have a injection or some have a drink, the waiting times can vary too.
I had injection & I do have difficult veins do took a few attempts, same as when I have a blood test. I set an alarm off as I went out door.
I didn’t have to alter my medication prior to scan. I was forewarned I would have to remove all jewellery & as I’m under 50 I has to sign a form confirming I wasn’t pregnant.
I took a big bottle of water a drank while waiting.
They put stickers at certain points around the neck then had me lie down on what was an was extremely narrow place & I’m not narrow, so I had nowhere to rest my arms. I tried to rest them on my stomach, but when they adjusted a scan, which was like a large overhead screen, I had to move my hands down, so this was the most uncomfortable bit. I looked at the edge of the overhead “screen” as it comes quite close and I would have felt a bit claustrophobic otherwise.
I was alone during scan, in a large, cool, dimly lit room, while a group of people was in a separate glassed off area. So no opportunity to ask questions. I did glimpse my image and I knew what it indicated from learning about distinct patterns. I obtained the specialist written report later on.
I had to avoid prolonged close contact with under 16s. Maximum of 30 mins sat next to you. This was for rest of day. Otherwise you can carry on as normal provided you do not work with photographic or radioactive materials…
Thank you very much, Purplenails, for the description of the raiu scan. I didn't think this was a no-contact thing (I know that the ablation is) - what on earth will I do about my animals?! No, I am not on any thyroid medicine. But have gone gluten and dairy free and am taking lots of supplements. I was taking acetyl-l-carnitine until a week and a half ago.
Each time this has happened before, the hyper has been mercifully short lived. It feels more serious this time, a lot more symptoms.
Was this for online access? In England they are contractually obliged to provide, other areas vary. You can formally request in writing a copy of your records under General Data Protection Regulation (GDPR). Heading it a “subject access request”. You should be able obtain copies of recent blood tests by verbal request.
I’ve edited previous post to be more specific in the contact advice after the scan I had. I have just dug out my letter & it specifies no prolonged close contact, ie no More than 30 mins sat with you, for a person under 16s this was for rest of day. Otherwise you can carry on as normal provided you do not work with photographic or radioactive materials…
At the time I wanted to see if my children would understand and stay well away. Should I need to have treatment. They are not small children, but have complex learning needs and it did not go well at all. The advice does not include pets they state there’s no research on the affect to pets.
I was told my nodule would not improve and as no autoimmune element no possibility of remission. I still take medication, and not had any notable fluctuations. I have not heard of a hot nodule fluctuating in the way you describe.
Maybe it's not a hot nodule then - it's not as if she even saw me, let alone saw my thyroid gland. I just read that you don't get eye symptoms with toxic MNG. But then I read that you can have Graves and toxic MNG simultaneously. But I don't have antibodies (I only have her word for that). But then again, sometimes there are no antibodies.
Well I have a large solitary nodule, maybe it behaves differently to multiple nodules? I do wonder about the eye issues too. I have a long list of eye complaints. Including misalignment, dryness, eye pressure pain & more.
Eye issues seem to be a common issue. Although the biggest concern is TED. Most doctors don’t accept that TED is not associated with Graves. Although some are aware it can be diagnosed in those that are hypothyroid or euthyroid.
I can’t get any help with my eyes. Endocrinologist says I don’t have the antibodies therefore won’t refer me. They also say they will repeat the antibodies but have left it off 2x. The GP says see optician. Certain retailers in my location liaise directly with hospital ophthalmology but they limit the emergency service, tell you to ring other places. I try to book in advance but it’s strictly emergency only…
'Thyroid eye disease (TED): also known as Graves ophthalmopathy. TED is most often seen in patients with Graves’ disease but also can be seen with Hashimoto’s thyroiditis. TED includes inflammation of the eyes, eye muscles and the surrounding tissues. Symptoms include dry eyes, red eyes, bulging of the eyes and double vision.'
You can immediately relieve the pain and burning of your eyes buy buying some over the counter PRESERVATIVE FREE lotions, potions, drops, and gels :
There are heavy duty " gunky " greases for overnight use and they are impossible to see much with other than your dreams. At the other end of the scale you will find very light, water type single phails of medicatio to be used as often as you like and many more brands and choice in betwen these two extremes.
If you do wear contact lenses suggest you consider switching to glasses :
You can get some ointments on the NHS - usually the " gunkier stuff " like vaseline in a squeezy tube just ensure " preservative free " even from te NHS - I fell in to that trap believing the NHS knew better than to prescribe something that exacerbated my symptoms.
Well if there is any good news, guessing it's that you do not have Graves Disease.
Hashimto's could have been in the mix but now we know you have a goitre and a nodule guess these two issues the main suspects.
Hopefully your symptoms will slowly ease - the blood test is just that - a snapshot at just one moment in time, and take no account of how you are actually feeling.
So I read goitres can take very many years to develop and if it is not restricting your abilty to function and breathe and eat I would play for time.
Similarly for the " hidden ' nodule and if the suggestion is for RAI thyroid ablation I would like an option to ingesting this toxic substance.
Could you be " managed ' on anti thyroid medication when a " hyper " type episode rears its ugly head ?
What are the effects of your " other " medications on your thyroid health condition ?
Now that I am properly in the local endocrinology system, I expect I will be able to access better help or, atleast, not be misdiagnosed with a bipolar relapse in future. When you say other medications, do you mean Lithium and Citalopram? The latter, I don't think affects the gland, and lithium is known to interfere with thyroid function, usually making it hypo.
I suppose we'll just have to see what the scans show.
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