I have been on thyroxine since 2003 and over the years the dose has increased to 125mcg. It took years (at least 20) before it showed up enough for me to be diagnosed. I recently had a blood test and expected the dose to rise because I have been tired a lot lately and my hair is like a Brillo pad again (these are the symptoms I had before initial diagnosis) and was surprised when it came back okay. That was when I checked out the symptoms listed here.
I could tick over half of them and never realised that they were symptoms. My doctor has been treating me for high blood pressure for years. I have so many sore throats that I was sent to the ent specialist last year. My cholesterol (which was high when I was first diagnosed but went normal after I started treatment) is high again. I also have had aches and pains in joints for years and years
My problem is what should I say to my doctor? I don't like to go in telling him that I know better than him what's wrong with me but at the same time I'm worried that I will be fobbed off.
Any advice please?
Thank you.
Written by
deepeabee
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hi dee, as you said, you been reading up in here for a while, and now you need advise and help.
we in return love to help, but can only, if we have your blood results, with the range in brackets ( ) to see what is going on.
also,if you had vitamins tested or full blood counts.
please post them as well. you can edit your post or write it in your answer.
it could be that you have antibodies, you should be tested for them as well. you could have hashimotos, most of us have.
for the hormon (T4) to work better, our vitamins and mineral reading should be mittle to upper in the brackets results. if not the doctor can subscribe or you need to buy the supplements yourself.
if you have the printout please put it in the post, if not, ask the receptionist to print it out for you..and start another post with the results xx
Make sure when you have a thyroid blood test that it is a fasting one-no food or drink (except for water) for 12hrs before your test. Take any vits/meds after the tests. (This is easily fine if you book your blood tests 1st thing in the am.) They need to include TSH, T3, t4 and antibodies. Often they don't include all these things, so you may need to get some of these privately tested. Most here, use medichecks or blue horizon.
Also get vit d, b12, folate & ferritin tested, if you haven't already.
Get a printout of your test results every time you get a blood test. You are legally entitled to them, though they may charge you a few pence for printing. As well getting your last set of test results, if you can get your last 3, it may give a better picture for members to comment on.
I believe it all comes down to cash available on the NHS. I've been Hoshimotos since 1999. Started on 75mg. Then was on 125 till 2008, suddenly they decided I only needed 100. Since then I've been a yoyo dieter. I'm now 60 with osteoporosis, I'm self employed and feel no hope in sight. I'm not depressed but , fed-up with only old age to look forward too physically. I am blessed with wonderful family who are scared for my health, but I'm at the wrong end of being a productive member of the financial world. I'll be a burden to the state and tax payers. We are born to finance the rich and will die poor.
I would ask about your vitamin levels. I feel so much better after starting vit c with my thyroxine, sublingual v it b12 and vit D later in the day.
It wasn't until I went to see my Gp for something else and mentioned I was taking these vitamins that she said oh yes those levels were low so you can take all those vitamins.
Sometime Gp's are not very helpful so we have to be pro active and ask questions. As if our results are within range the Gp will not tell you how low they actually are.
Also with high antibodies you could have hashimotos which gives some debilitating symptoms. I was feeling so Ill for a year until i researched it all.
Good luck and hope you get some treatment as you don't need to feel as Ill as you do.
Thank you for your reply. My Gp is aware of the strength of sublingual B12 I am on and has said carry on with them. I do have regular blood tests. I cannot tell you how much better I feel since taking them.
I would ask your doctor for blood tests to check levels of Vitamin D and B12, Folate and Ferritin.
You may be deficient in some or all of these and need supplements which Dr will prescrise. Look up deficiencies in these nutrients on NHS choices and see if you have any of the symptoms.
You could write a list of ALL your symptoms for when you see Dr and ask how they can be best addressed.
How did you get on at ENT? Did you have a nasendoscope in clinic? Any findings or treatment?
X🐥
ps
Did you have an Ultrasound scan of your Thyroid when first diagnosed?
My Cholesterol was high years after diagnosis. I had previously refused statins. Few years after being on Levothyroxine a Medical Consultant wanted to start me on statins because he noticed I had high Cholesterol. But as the test was ten months old he ordered another first. My Cholesterol had come down lower than it had ever been. This is because for the past nine months I had eaten porridge with added fine oat bran every morning . I hadn't been told of the high cholesterol but changed my breakfast from Shredded Wheat to porridge for another reason.
Well, actually, you do know better than him what's wrong with you! If they'd only listen to their patients, they'd be much better doctors! You need an increase in dose, that's obvious without even seeing your results. If your symptoms are increasing, or returning, then your dose is too low. It's not rocket science!
Plus your cholesterol has risen! That's a very good indication that your dose is too low. It will go down again when your thyroid levels rise.
Have you had your antibodies tested? If not, it would be a good idea to ask, because you need to know - despite what doctors think! If you know you have Hashi's, you can do something about it. But you will also know that your condition is going to get slowly worse, so you will need an increase from time to time.
Always, always get a print-out of your results when having a blood test. It is your legal right to have one, if you live in the UK.
Most of us have autoimmune thyroid disease. There's no cure for high antibodies other than following all the thyroid disease protocols to monitor and look after yourself. Stress alone will make them flare up. And stress will raise cortisol which might drive absorption down. Adrenals might be suffering a bit too. Agree with GG, sounds like your body is screaming for a raise. I wonder, if your doc is an approachable person, would it be any good copying what you gave asked the forum. It's all your concerns in a nutshell. Yes, Def go in with full list of symptoms. Good luck
I would ask the doc to do a full thyroid panel: TSH/FT3/FT4/rT3/TPOAb/TGBAb. If the antibody tests indicate you have Hashimoto's, then you probably have food trigger(s) and deep nutritional deficits. In that case, you need the services of an allergist and/or environmental health expert.
If your FT3 is below mid-range, then you aren't converting T4->T3 well, in which case the doc needs to fix your conversion (not likely!), or start you on supplemental T3.
Did you see an Endocrinologist back in 2003 when you were first diagnosed? Or have the Ultrasound scan?
If not would you consider asking your GP for an urgent referal to Endo now? This is justifiable by the fact that you have so many symptoms returned so obviously not well on current medication 14 years on from Hypothyroidism diagnosis.
Where I am GPs only test TSH for patients already on Levothyroxine and are happy with TSH under 2. Which isn't helpful if having symptoms. ALSO, as far as I'm aware it is only hospital Consultants who test for Antibodies.
Your GP should be happy to do the Vitamin & minerals tests. Also with sending you to Radiology for the scan. If they won't do the full Thyroid blood tests, including the Antibodies, then I would definitely ask for urgent referal to Endocrinologist. You could then phone Endo 's secretary or first Appointments department at the hospital and ask how long the wait will be.
No I didn't see anyone but the doctor. I have asked today to see a specialist but the doctor said she'd want another blood test first. She also said that I am showing signs of diabetes and wants me to see the diabetic nurse. I feel a bit frustrated because this is exactly what happened last time before I was found to have an under active thyroid. Am I right they are connected?
Haven't heard that myself deepeabee. Well, I am not diabetic anyway.
Did she agree to do the Vitamin D etc tests at the same time?
Did you ask for the scan?
Did she rush you?
Were you able to get a print out of your blood results?
Seems to me like you are going to have to keep going back to GPs till you get everything sorted. Don't give up, keep pestering. See a different GP if you have to. OR before your blood test appointment ask for a phone call back from GP and ask her to add on the Vitamin D, B12, Folate & Ferritin to your test.
All the best .
Be careful.
What we have to go through to get fully diagnosed and correctly treated. UNBELIEVABLE.
Thanks for your reply. I did feel rushed but whether that was the doctor or just my fear I don't know. I've looked it up and there is a link between thyroid and diabetes. A new study out in April confirmed it. I didn't manage to ask for anything else but my blood test is in the morning. Last time I had taken my meds before but this time I'll wait until afterwards.
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