Am I being paranoid about a Yorkshire consultant?

[louhop]

I am 65 years old and have Hashimoto’s and have been taking 20mcg Liothyronine (T3) and 75mcg Levothyroxine (T4) daily for the past 7 years and although live in Leeds I am under the shared care of my GP and a North Yorkshire NHS hospital. I saw the same lovely endocrinologist each time and all was well. My results were stable and I felt well and everything was OK on my annual checkups.

Last time I ‘saw’ that endocrinologist was two years ago when I had a phone appointment - all was good and I continued as before. The results were free T4 7.8, free T3 6.76, and TSH <0.05

The ranges for these were free T4 7.8-18.0, free T3 3.5-6.8 and TSH 0.2-4.3 - I can only assume these are the same ranges for the other results mentioned in this post as the consultants did not include them in their letters.

One year ago, I had a conversation with a different endocrinologist and again all was well. The results were free T4 10.2, free T3 5.38, TSH <0.05

However, in the letter to the GP she stated she had not discussed the danger of osteoporosis and recommended that they put me through a dexa scan. I am assuming either I am on the waiting list or they never referred me.

This year I was back for a face-to-face appointment with yet a different endocrinologist . This time it was very different, the first thing she said was that I was on a very high dose of T3 - then it was the talk about osteoporosis and lack of calcium and how I may need to go on medication for it - and when I queried if this meant I could continue with my T3 she declined to answer - then it was asking me about heart rhythms and had I palpitations - I replied no but she wanted me to go on a 24-hour monitor to determine if there were any issues - which I refused. She then felt my pulse but assuming there wasn’t anything wrong with it as she didn’t say anything about it. Then she wanted me to go on capsules and split my dose - to which I said I was happy on the tablets and could easily split them and found capsules difficult to take - a little white lie. She also asked about the time of the blood draw and when I had last taken my medication. Not proud to say I did lie about that and said 3-4 hours as I felt she was simply looking for anything that would give her a reason to reduce/remove the T3.

Not sure if it was my blood pressure / pulse that caused all this it was 135/ 69 pulse 75 but as I explained to the nurse I was late for the appointment and extremely stressed! But am extremely worried about it!

The follow up blood test for next year’s appointment is not for free T3, free T4 and TSH as usual but also includes U&E’s, vitamin D and bone profile. She made no mention of those additional tests in our discussions.

So, am I being paranoid or do you think the endocrinologist wants to get me off T3 ? If the latter, have you any suggestions about how I can avoid that happening?

And anyone recognises this type of conversation and thinks they have experienced that consultant, please feel free to private message me

[SlowDragon Administrator]

It’s always a good idea to test vitamin D, folate, ferritin and B12 at least annually

Exactly what vitamin supplements are you taking

When were vitamin levels last tested

And if they offer DXA scan I would take it

68% of 65 year old females have osteopenia. They aren’t ALL on T3

researchgate.net/figure/Pre...

[louhop in reply to SlowDragon]

I used to push my GP for Vit D, folate, ferritin and B12 every year from when I was diagnosed - all except Vit D were consistently in the high end of the range - therefore I take VitD/K2 spray every day - more in winter - I have an outside job which means wearing a t-shirt and shorts in summer so tend to ease up in then .

[louhop in reply to louhop]

I am very short and I believe dexa scans have more difficulty in assessing the density of bone for us ‘outliers’ which tends to increase the change of falling in the osteoporosis/osteopenia brackets. I also feel that my T3 would be turned off like a tap if there was anywhere near that level

Should add that it increases chance for small people and decreases it for tall people !

[serenfach]

Did they take the blood pressure twice with a wait in between? Was it the full cuff or the fore arm cuff (I get wildly different results). Were your legs crossed and did you talk during the test? All these alter the tests so just doing one test when you have been rushing around does not mean anything.

If the blood pressure thing is worrying you, get your own, they are not too expensive, and test yourself regularly. I can bet the results will be very different from the Endo experience.

It does sound like she is against T3, but remember she is there to advise, not dictate, and the idea is they are supposed to work in partnership with you, Stop laughing!

Any further push to change your dose, I would just say you feel well and happy on the current dose and why would they want you to become ill? This usually makes them back off and realise they are not God.

How can you tell the difference between God and and Endo?

God does not think he is an Endo.

[louhop in reply to serenfach]

Of course not 😂- I was the last patient and the nurse wanted to clean. Not at all worried about the readings am normally around 90/60 - did ask her to put on my record the circumstance of the readings but would bet it is not there. Just concerned the endo may have looked at them and added these extra tests thinking I am less fit than I am.

Not sure about that they are only there to advise and but think they can refuse to prescribe if they believe it to be for the ‘best’.

Very true about God and Endos!😂

[Catlover1981]

I am sorry but why won't you have a 24 hour ECG? You might think you are fine but it's just to make sure there is nothing wrong with your heart. They need to do checks that are routine but based on your visit I wouldn't think she wants you off medication

[louhop]

Well, it took a lot to get prescribed T3 and it has made a huge difference to my quality of life. I am stable and nothing has changed in my blood results significantly so the question is why would a consultant faced with the same results as previous years put in all these extra hoops I have to jump through in order to retain my medication. They were trying to get me to change to a ‘cheaper’ medication after I had already said I am perfectly happy as I am so can see they may be looking to get me off T3 to save money. Alternatively, a lot of consultants don’t believe in the benefit of T3 and so it might be because ‘I don’t believe in T3 and I will get you off it’ - which I was told my face regarding Carbimazole when I was on it for Graves’ disease . Because of this, I am wary of doing anything that may give them the slightest evidence to take me off T3.