Bone Scan results???: Hi, My gp insisted that I... - Thyroid UK

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Bone Scan results???

dizzy864 profile image
7 Replies

Hi, My gp insisted that I have a bone scan. I had it done last week. I had a long talk with the operator at the time. I had previously had a scan in 2009. The operator told me that the machine used back then was very old and for some reason unknown to her it was always used on the lowest possible resolution. As a result she told me that she was unable to tell me what my previous bone density had been or to use that result in any way to compare with my current bone density.

Yesterday, I had a phone call from the receptionist at my surgery. She told me that my gp needed to speak to me about my loss of bone density due to my being over medicated with thyroid meds.

She refused to tell me the actual result of my test. I am having a thyroid blood draw tomorrow so hope I will get an actual result from the nurse, failing that I have an appointment to see the gp on Monday.

I would like to know why my gp blames my "over medication" when I've actually been under medicated for four years. I have done some research and it seems that women should expect to lose up to 20% of their bone density within five years of completing the menopause - which fits me.

My question is : how do I calculate my percentage loss? I would obviously, need to have my previous result, which is not suppose to be available. I also read that my bone density should be between +1.0 and -1.0 but could be between +2.5 and -2.5. What figures do I use to work out the percentage loss?

Also, I was diagnosed with fibro myalgia and really suffered with various disabilities and pain for five years before finally ( at my suggestion! ) being tested for vitamin D deficiency. I was found to be very deficient. Supplementing with vitamin D "cured" the fibro myalgia. Surely, if my bone density has dropped more than normal my severe vitamin D deficiency is to blame rather than my over medication which I never was anyway. It's now been agreed by a different GP that I was under medicated. My meds were increased three months ago and I am a lot better.

I'd appreciate any advice on how to deal with my gp on Monday. The last thing I want is for her to reduce my thyroid meds below what they were three months ago when I was so ill.

Thanks in advance.

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7 Replies
Wetsuiter profile image
Wetsuiter

i d be temptedto not see tgat gp and return to the one who put your meds up

dizzy864 profile image
dizzy864 in reply toWetsuiter

Hi Thanks for your reply.

Yes, I am seeing the one that put my meds up. Unfortunately, she seems to have had a change of heart and now thinks that I was over medicated.

i'll know more when I see her.

SlowDragon profile image
SlowDragonAdministrator

Both low vitamin D and LOW FT3 can be linked to osteoporosis

Fibromyalgia is often linked to low FT3

thyroidpatients.ca/2018/07/...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

absolutely refuse to change dose without FULL Thyroid and vitamin testing

Privately if necessary

dizzy864 profile image
dizzy864 in reply toSlowDragon

Hi, thanks for your reply. It now seems that I never had fibro myalgia. My then gp, who retired a few years ago never thought to test me for vitamin D deficiency. It was really annoying how much I suffered because of that.

Yes I do comply with the recommended routine for a blood draw. My appointment is for 9.00am tomorrow so I''l take meds after and eat breakfast after as well.

My anti bodies were tested a few weeks ago by my gp and were quite low.

I'm refusing to have private tests done. My gp surgery absolutely refuses to recognize private test results. I know it may satisfy my curiosity but that is all it would achieve. I don't have money to spare just for that. If my surgery would recognize results then I would probably opt for some private testing. They won't even look at private results. My local hospital also refuses to look at private test results. It's very frustrating.

SlowDragon profile image
SlowDragonAdministrator in reply todizzy864

So you presumably split your T3 anyway?

Last dose T3 8-12 hours before testing

dizzy864 profile image
dizzy864 in reply toSlowDragon

Yes, that's correct

MissGrace profile image
MissGrace

I gave posted this before, so apologies if you have read this before.

I see a private endo, which I know puts me in a privileged position and I’m sorry that isn’t possible for so many on here. He is a thyroid specialist.

My TSH is well below range - my T4 and T3 in range. He sent me for a Dexa scan and my score for my hip in the FRAX scale was right up against the area of needing treatment for osteoporosis (which I told him I didn’t want) and my spine well into osteopenia.

He didn’t blame my TSH at all - after all it’s only been low for a few months - hardly time for my bones to crumble. Instead, he pointed to the blood test that showed I had just about no oestrogen, (I’m post-menopause and never wanted HRT), as the obvious culprit and the fact I’ve had a low BMI all my life. Although I’ve always been active and exercised a lot, my chosen exercises, including lots of swimming which I have done for over 30 years, is not load bearing so hasn’t ‘built bone’ He suggested supplements and load bearing exercise to help me build my bones - and advised my GP about this too. Never once did he suggest I make myself ill by reducing my thyroid medication.

I also discussed with him the fact that I’d rather risk a fracture than live a half life on too little medication.

They really need to start treating us like adults on this kind of thing. Not only are we clever enough to know that a suppressed TSH with the T4 and T3 in range is not over-medication; that over-medication is not the same as being hyperthyroid; that suppressed TSH in a hypo patient is also not being hyperthyroid; that being hyperthyroid is a totally different condition where your own thyroid over produces T1,2,3 and 4; that over-medication has obvious (and unpleasant) physical symptoms that we would recognise (and GPs can easily test for, like heart rate, tremor etc) and then want to reduce our dose, but also, that bone density is affected by many, many complex biological processes.

We are also clever enough (brain fog or not) to assess what we are willing to risk and what we are not, for the sake of health.

Tell your GP, thanks, but no thanks to any reduction. 🤸🏿‍♀️🥛

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