Who do I ask for my hospital notes?: I have... - Thyroid UK

Thyroid UK

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Who do I ask for my hospital notes?

2pence
2pence

I have realised that while being treated for infertility (yes, probably due to thyroid issues) I was given Parlodel which is also used for Parkinsons or for a pituitary tumor in infertility cases. This is from a note I made when i went into my GP's and read through the paper notes they held a while ago. I would be interested to know what made the consultant give me this drug and did he have any reason to think that I had a pituitary tumor or problem. I have an appointment in the autumn with neurology to check out a tremor which is worse on my right and is starting to interfere with eating, writing, sewing and I'm fed up with deleting stuff on the PC when I don't want to. I have had this tremor for about thirty years but only recently has it become worse.

I am hypothyroid and taking 128mcg levothyroxine and 31.5mcg of liothyronine daily. I increased the liothyronine about six weeks ago as my annual blood test from my GP showed a decrease in FT3 from my previous private one in November. I think that this was probably down to the terrible weather we had after Christmas when I really struggled.

13 Replies

About 4 years ago I asked to look at my hospital notes- did it thru hospital website, where there was a form to fill in / send back, about what I was interested in. I presume all hospital trusts have similar process. I then got contacted exactly to the day I think 6 weeks later , as though they were just making me wait to the last minute. Had to go to an office near the hospital where records were held and allowed to go thru them and make notes. Not much physical space, as sitting at a computer desk with keyboard still in place, nor able to take husband into help. Do remember that certain pages were bound together so I couldn't read them , when I queried that what I needed was in that bit, was told I couldn't read that section as apparently I had not asked for that. Since all the paperwork related to why I ended up in Intensive Care after a routine outpatients bile duct procedure, I suspect the truth was hidden from me. I hope you have a better experience with your medical notes than I did.

2pence
2pence in reply to Judithdalston

Thanks, I’m assuming that with GDPR I can now have access to them but was told some years ago that many of the notes were microfisched. I hav read through my GP’s paper notes to see what was conveyed to them and it was barely my name and his signature though I did pick up what he had requested them to prescribe for me. Unfortunately GP’s don’t have the time to read through what has happened previously and don’t have time to hear you tell them.

shaws
shawsAdministrator

I cannot answer your question but this is a link which might be helpful. Members who have personal knowledge will respond when they read your post.

webmd.com/drugs/2/drug-5564...

2pence
2pence in reply to shaws

Thanks for this, Shaws, very interesting.

2pence
2pence in reply to shaws

Thanks Shaws that is interesting. I would like to know if it was thought that there was a pituitary tumour and it is possible that I had high prolactin. I was treated from about the age of 26-34 for infertility. My eldest daughter was born when I was 20 but following ovarian surgery at 29 I was told that she is a complete fluke as at that point I had ovulated less than the fingers on his hand and he held up four fingers. I think that I have been hypo for a long time before diagnosis and was diagnosed with a TSH of around 3 right in the middle of their range.

shaws
shawsAdministrator in reply to 2pence

Probably you were hypo but, as stated above, doctors no longer go by clinical symptoms (which are extremely important) but it seems that the 'shortcut' TSH reveals all to the 'modern' specialists.

Also fertility can also be affected by hypothyroidism. Some develop PCOS etc etc. Even if not hypo PCOS can be resolved by thyroid hormones.

It appears the Parlodel was given to treat what has since become the noticeable tremor you noted. Tremors can be caused due to hypothyroidism (Low T3) but is widely associated with hyperthyroidism. Shameful that conventional doctors don't look both ways before making a diagnosis.

Note lines 7-8 especially, found this very interesting:

"Research from other groups shows a strong relationship between thyroid function and myelin/demylenation patterns in nerve fibers in animals. Specifically, insufficient T3 concentrations demyelinates nerve axons, while T3 supplementation elicits myelin regrowth. Myelin is the white sheathing, the insulation that protects nerves and improves the electrical conduction of messages in sensory, motor and other neurons. Like co-axial cable in electrical wiring, when the protective sheathing is lost, electrical conductance is disrupted. The early symptoms of a demyelinating disease neuromuscular pain, weakness, sometimes tremors. These can be misdiagnosed as multiple sclerosis, fibromyalgia, chronic pain, when in reality, the culprit is a diseased thyroid gland." (diseased = dysfunction)

Many of the above issues are caused by adverse reactions to pharmaceuticals.

hormonesmatter.com/adverse-...

Please remember that "disease" is a much scarier name for "dysfunction." That which dysfunctions can be made to function if the root cause is found. In most cases, it can be found. But this is where conventional medicine fails its patients -- in the vast majority of cases, their profession doesn't allow them to look for a root cause of what is usually reversible dysfunction and instead called "disease" of unknown origin and thus no cure. Treatment is done anyway! It's a total guessing game. Shameful.

2pence
2pence in reply to CSmithLadd

Thanks CSmith, I didn’t answer yesterday as was travelling and WiFi here doesn’t seem good all the time. I will have a good read of your link. I’ve not had any hyper symptoms but hypo one’s for most of my life. I will make sure I use the word “dysfunction” when speaking to the neurologist.

I can't answer your question, but have you had your B12 tested? Hypos are often low on B12 and there might be a connection with your tremor. :)

2pence
2pence in reply to greygoose

Hi GG, yes had that tested some years ago as I knew of the link and my grandmother had pernicious anaemia. It was about 400 and so I’ve been supplementing ever since. Initially took 1,000 and now take 500 B12 and it’s always been well over 1,000.

greygoose
greygoose in reply to 2pence

That's good. :)

Hidden
Hidden

I wrote to the secretary of the hospital consultant and asked for copies of my notes. I offered to pay a fee and postage but they just turned up in the post several weeks later.

Just a thought about your hand tremor ---- have you checked your B12 levels? I too developed a hand tremor, had low / borderline deficient B12 and it disappeared when I treated with B12 loading injections. I'm not a medic but might be worth checking in case there's a simple solution.

2pence
2pence in reply to Hidden

Hi Hollyberry, yes I am aware of B12 (see my reply to GG). I don’t think that I can just write to his secretary as he retired many years ago and I have been told all my old notes were microfisched so they’ll need to dig them out of the archives.

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