Hi, I am a 20-25YO Female who has been diagnosed for 15 years with hypothyroidism. In the last 6 months I have had 3 different doctors from my GP tell me 3 different things about my thyroxine level. Being way to low 6 months ago to now being way too high.
The issues I am struggling with is that I work out for at least an hour to two hours everyday (MMA training, Running, Rugby for example) and am failing to lose weight. I am a healthy weight but its not ideal. So I made the logical conclusion to suggest getting my thyroid tested as the dose may not be enough. Today they told me that the dose is way to high and that is causing me to gain weight (which is contrary to everything that I have ever been told). Apparently I need less else I will cause myself to become unfit and have heart issues in the future? I am now really concerned that I have again been fobbed off by my GP and I'm in need of a specialist to help me out. Am I on good grounds to request a conversation with a specialist and if so... should I go private?
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BluePenYellow
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Before seeing a specialist (who aren't always that helpful) and/or spending money going private, It would be helpful for us to make meaningful comments if you could post your latest test results for
TSH
FT4
FT3
Thyroid antibodies (unless you already know you have Hashimoto's)
Vit D
B12
Folate
Ferritin
We really need to see where your FT3 lies in relation to your FT4. Hard exercise depletes T3 and if you are already low in T3 then this wont help. Low T3 causes symptoms and makes weight loss difficult.
It's important to know if you did your test early morning (no later than 9am), with nothing to eat or drink except water before the test, and when last dose of thyroid meds was before test. Last dose of Levo should be 24 hours before test and if taking T3 or NDT the last dose of those should be 8-12 hours before test.
Hi, I am currently in talks with my GP to have access to my data - I keep asking but I get moved to the bottom of the pile at every opportunity. I don't take any supplements because in short no one has told me too. I have had hypothyroidism since I was 8 years old (non hereditary) and no one has ever mentioned I should be doing all this stuff. Only now after multiple failings with my GP have I decided to reach out for other advice. Thank you! If I get these results back I'll share them x
Don't ask your doctor for access to your data. You can ask the receptionists for access online - that often works in England. I'm not sure of the situation in Wales, Scotland and Northern Ireland.
Another option you have, that your surgery legally can't ignore, is to ask for a copy of your GP records using the letter and info suggested on this page :
The link is from the Information Commissioner's Office website. The letter is helpful because it means you don't have to see or speak to anyone, and your surgery can't legally ignore it. I would suggest delivering it by hand though - and put on the letter and the envelope that it was "Delivered By Hand" so they can't claim it was lost in the post. Another alternative is sending by registered (not recorded) mail.
From my own experience I would suggest mentioning how you want to information to be supplied - on paper or on a CD - those are the only two options I am aware of. There is also the option of getting online access as I mentioned above but not all surgeries are geared up for this.
For information on your rights of access to your medical information our forum guru on the subject is DJR1. You can see her posts and replies here :
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Hello, I think there are some different issues too, so I will try to help sort them out in my hypo brain:
1. why aren’t I losing weight
2. would I get more sense from a specialist than these GPs.
1. If you’re burning less than you are eating you should be losing weight... unless your dose isn’t right.
2. You would not necessarily get more sense from a specialist unless you got some recommendations from thyroid UK.
There is a third and cheaper option to try first:
- get your latest lab test results and ranges from the GP here and ask people what they think.
Ideally, this would be TSH, fT4, fT3. Vitamin levels are also helpful (d, folate, ferritin B12). You can ask to have vitamins tested if the GP has not done it recently. They may say yes!
- read a little - here, other websites, or in books about how to understand your own lab results. Doctors are not always very good at it, so it is crucial that you become your own expert, unfortunately...
- if you cannot get a doctor to test your fT3 and fT4, then it is possible to pay for private finger prick test kits which don’t cost a lot. You will then be able to ask for views on the results here and eventually, you probably won’t need help at all in understanding them. And then you are in control and can tell the doctor whether you are over or under medicated!
Thank you for your help, it just seems so much appears to be pushing me down hill at the moment. Its like I'm constantly trying to do what I've been told is right and not getting anywhere with it! I agree becoming your own expert might be the best way! When I know more I will post again. x
I would second jimh111 on the tests. Many of us use them because we find GPs are not willing to test fT4 and fT3 and those are crucial in understanding how we are doing on current medication. GPs are of the opinion that TSH tells them everything, but it is a bit like thinking you can set your sat nav for your home town and that it will take you straight to your front door. TSH might get you somewhere within shooting distance, like that sat nav, but it won’t get you home, to where you are supposed to be!
Excellent advice. I would get hold of your blood test results - NO or delayingn is not an acceptable response! I would also get a cheap finger prick blood test, the Monitor My Health is a good one and relatively cheap. See thyroiduk.org/help-and-supp... .
Excessive exercise will lower Ft3 and possibly affect cortisol levels
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for this, I will look into these vitamin testing services as my GPs seem adamant they aren't going to help me for another 3 months as "it isn't needed". It just seems everything is stacked against me at the moment! Thank you for these tips - id never even thought about it!
Thank you all, In my mind I had always been told that a specialist knows more and can be more help but even just putting this out there has made me realise that I need to be doing more for myself rather than relying on my Drs. Thank you!
I'd get your records from doc so you know your history but if you want to start taking control you f what's going on, I'd get a full set of tests done privately. Medichecks and Blue Horizon are good. Don't take and vits for a week before as they can contain biotin which skews results and take tests first thing before taking Levo. I'd get at least tsh t4 and T3 but if it's a one- off you could get the Medichecks Advanced Well Wiman which would give you a complete picture for c£150.
Hi, I would say yes you should be able to. Speak to your g.p and request that you want to be referred to an endocrinologist . Say the way you are feeling is affecting your day to day activities and your quality of life. Hope this helps
No wonder we get very frustrated with the medical professionals as the majority seem to know nothing at all about clinical symptoms and thus a patient doesn't get the treatment they need to stabilise their thyroid condition.
If you copy and paste some of your above history into your Profile Page - you only have your name on this at present. This means that in future members can click on your name and read your background to becoming diagnosed and you don't often need to repeat. (just click on you name and it will take you to you Profile page)
SeasideSusie has given you excellent advice and we have to read/learn/ask questions so that we can recover (although we will have to take thyroid hormones for life) and be symptom-free.
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