I'm brand new here and new to thyroid issues. I have suffered with a neurological condition called idiopathic intracranial hypertension for 12 years. During my last MRI due to a flare up, the docs found white matter lesions, too many for my age and possibly due to something called small vessel disease. So whilst I'm having tests for that, GP tests some other things to and finds a TSH level of 17 (And another of 6... waiting for results of third one now), high prolactin (998) and ferratin (279) levels. I then had more and more tests including TPO (in the 70s) and was referred to an endo and for 3 days.. yes 3... was put onto levothyroxine and cabergoline. I then had a phonecall from the endo telling me to stop taking them as my last bloods came back 'more normal' but i dont know what levels they were. He agreed to keep my appointment for an MRI on my pituitary after i begged him not to cancel that too (that's in a few days)
Meanwhile I feel like my body is giving up, literally dying from the inside out. I'm off work which I never am and have a host of random and embarassing and debilitating symptoms and the most crushing fatigue I've ever experienced in my life. I have chest pains, joint pains, urinary problems, temperature issues, horrific dreams and sleep all the time to name a few.
Saw my neuro today who says it's not her problem it's endo but they are happy my last reading of tsh was more normal. After some reading I've realised I should also have had further tests for t3 and t4 and vitamins. I am now looking at doing this privately through the tests mentioned on the thyroid UK website.
I'm just after some guidance, support and reassurance that I'm not totally losing my mind and I could still be ill despite the doctors lack of interest.
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Lyris83
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Were all the TSH tests done at the same time of day, and fasting? TSH is highest early morning, and drops throughout the day. It also drops after eating. Doctors don't seem to realise this.
Are you in the UK? If so, it is your legal right to have a print-out of your results. But, you have to ask, they won't just give them to you. You should always do this, because you need to know exactly what was tested and exactly what the results were. Your endos idea of 'normal' might not be 'normal' at all. They know so little about thyroid.
They were done at different times but fasted and as i am a shift worker, times for my body might not mean the same thing 😂 the first was done around 10am, i finished work at 7am. I can't remember what time the second one was. And the endo ones were straight after he had seen me, i hadn't eaten then either. I dont tend to eat until afternoon generally anyway.
My gp receptionist is very good and gives me whatever tests I want printed out, i will definately have to ask the hospital for the ones the endo did however.
Even if you're a shift worker, your circadian rhythm is the same as everyone else's. So, if the blood draws were not done at the same time, you cannot compare the results. If your endo labs were done late afternoon, then the TSH will be at its lowest.
Just checked the time for the endo bloods, was around 1200hrs.
He didnt give the full list of what was tested for that one as it was done via phone call. He said my thyroid and prolactin levels were more within normal range, stop taking the meds he gave and that was that.
I will ring and ask for a copy of the tests tomorrow.
I've spent a good couple of hours reading more about this both on this forum and thyroid uk so understand a bit more now although still totally new and clueless on most of this.
I am going to have this mri on Saturday to check pituatry gland and then see gp again. If im not happy and they won't test further, i will look to follow the guidance on doing the medicheck one and create a folder of all my test results.
I think your endo is pretty clueless, too! 'More within the normal range' is not the same as normal! Besides, 'normal' only means 'in-range', and the ranges are too wide. I think doing a full medicheck or Blur Horizon would be a very good idea.
I try not to get cross when I read posts like your but I do. You need treatment. It sounds like you options are to pay private and see one of the doctors on our list available via TUK website or to self treat, maybe ask GP to support with this in terms of taking bloods. It is very hard to get decent treatment for thyroid conditions in the uk and despite much protest from patients the situation seems to be getting worse. Post you latest bloods. The endo sounds utterly heartless but he might have managed to do your B12, folate, vitamin D and ferretin as well as TSH t4 and T3.
How much Levo did the endo prescribe - if it was only a starting dose it could make you feel worse to begin with until you get to the correct dose determined by how you feel and your TSH, ft 4 and ft3 results after 6 weeks of any dose change
Yes, that's why I was wondering. The BNF gives a caution that in hyperprolactinaemic patients for instance, the source of the hyperprolactinaemia should be established first i.e. exclude pituitary tumour before treatment with the drug.
Yeh i was surprised he put me straight on it to be fair but i think he was more worried about my prolactin levels ( as was my GP ) than the thyroid stuff so put me right on it. I've had several high prolactin levels in years past where a 2nd reading was normal again so no follow ups were done.
I’m sorry I can’t give you any medical advice but I really feel for you... I too have been in a similar situation recently and you feel like your going mad and just want someone to help you get back to some kind of normality. Well I can vouch that the support and wealth of knowledge on this forum has been priceless. You’ll get more answers here than you probably will from the ‘professionals’ .. good luck and Best Wishes x
The Endo taking you off of levothyroxine because your blood test were “more normal” is telling. Many of us have had similar language from Endos. personally for myself I heard language such as “borderline“ for years. And as you’ve been advised here unfortunately we have to see and request the numbers for ourselves. And it can make you feel like you’re losing your mind and it’s hard to do when you don’t feel good in the first place. However you are on the right track by visiting here. Many of us have had to search and search and go to doctor after doctor but finally they do listen and we do find replacement hormone and we do get better. It sounds like you have more than one thing going on but replacement thyroid hormone is one of the easiest things to fix - with the right doctor. And it’s amazing how our energy returns and our thinking clears up and we begin to function a bit more normally with replacement thyroid hormone. In the meantime you might look into supplementing with vitamin D3 and selenium. Removing things from your diet like gluten, soy and dairy is also something you can do at home just as a test to see if it makes you feel better. 10 to 20 days I ought to offer up some results if it’s going to work for you. Look into and read all you can find on digestive enzymes and proteolytic enzyme‘s. Adding Turmeric is an herbal remedy that can sometimes offer up relief in as little as 3 to 5 days. Turmeric doesn’t necessarily help the thyroid but it can tame any ongoing inflammation which can’t help but make us feel better regardless of the origin of inflammation. These are a few suggestions that have helped me in my road to good health. you can’t do them all at once and it’s really not advisable even, because you want to know what works and we’re talking about vitamins and herbs and enzymes and so quite harmless really and many times do so much good. Please keep in touch - you’re not going crazy and you can guide your own health care and Find success and relief. we have all had to do this here on HealthUnlocked. it’s amazing how our bodies can heal given the right building blocks!
Sorry you’re having to cope with all this. Seems like you have a few things going on, all over my head, sorry.
Although I have Hashimotos, which may or may not turn out to be one of your issues?
At the moment am reading a book (I don’t read usually as I am generally too tired/busy/), which I recommend you look up. It’s a get yourself well book, with lots of information and scientific back up in it. I’ve found it helpful to give me some insight and guidance, it’s called How to fix your brain by Dr Tom O’Bryan.
Good luck with getting sorted. I hope you’ll soon be on the road to some answers and recovery x
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