Monitoring Thyroid

[jodary]

I have a condition which is known as an MPN . I have a haematology appointment this week when my Consultant is going to discuss a new treatment. This treatment is known to interfere with thyroid function and anyone going on it will need their thyroid function monitored as it can cause thyroid issues in people who haven’t had a problem before. I need to convince the haematologist that testing tsh alone is not sufficient but as I can’t even convince my gp I don’t fancy my chances with that ! It would need to be monitored frequently and I can’t afford to have private bloods that often. Are there any articles or information that might make it easier for me to get my point across ? I don’t feel comfortable starting this treatment and it being my responsibility to monitor how it’s affecting my other conditions.

[Bertwills]

Hi, I’m sorry to hear about your illness & the added worry of a treatment with side effects. It may be that your consultant will be more educated than a GP about full thyroid hormone testing. Hospital testing tends to be more thorough.

If you read up on the benefits of full testing here then you’ll be able to ask the right questions. If you find that the testing is limited to TSH only then come back here & hopefully somebody with the documentation you need will help out. I have read that cardiologists for example do full testing,

[jodary in reply to Bertwills]

Unfortunately I’ve already discussed with them and they will only do tsh . I’ve tried to tell them that tsh becomes somewhat irrelevant when on thyroxine for many years . Somewhere along the line drs have started treating by tsh not diagnosing by tsh . This is why I was looking for something that might get my message across . Thank you for replying

[Bertwills in reply to jodary]

Ah, that is a shame. The NHS is maddening & so incompetent in so many ways. I think I have read here that there are guidelines maybe by NICE. But NICE guidelines are only suggestions, I believe, that don’t have to be followed.

Can you find out if NHS endocrinologists do full testing & ask for a referral?

You could try posting another question. I don’t know why nobody else replied. There are more experienced people here who might have an answer. At least you know that the timing of TSH testing & fasting is important so you can make it as accurate as possible. Do you know what your TSH is now?

[jodary in reply to Bertwills]

The latest medichecks showed that I am not converting well and I am working to improve my other vitamins to help conversion . The problem is that with a low tsh it’s likely that any future tests up to a tsh of 4.2 would be accepted as normal by them regardless of how I feel. Thank you for replying, it does make me feel very alone when I get no replies .

Latest test

[Bertwills in reply to jodary]

Hi, it’s always a puzzle why some posts go unanswered & others have many replies. You’re definitely a candidate for some T3, your conversion isn’t great. Do you have Hashimoto’s? Do you take selenium to help conversion?

[jodary in reply to Bertwills]

I eat Brazil nuts . I have had good T3 in the past so am obviously capable of conversion . I have seen private Endo in the past with no success and am not confident to source my own T3 especially now with my other health issues . Yes I am disappointed with no other replies . Will have to try and sort something myself as clinic appointment is on Friday . Thank you

[Mostew]

I would recommend asking for an appointment with Professor Harrison at Guys hospital in London. Worth going down for appointment and then phone appointments.

They will listen to your concerns and discuss best plan.

Have other meds been suggested?

[jodary in reply to Mostew]

I’ve been on hydroxycarbonmide for 4 years but my platelets are stuck in the 700/800 area . I don’t want a higher dose so Inteferon has been suggested with its risk of causing thyroid problems . Do you have an MPN and a thyroid issue ? As you are familiar with Professor Harrison ?

[Mostew in reply to jodary]

Professor Harrison assured me if I already have underactive thyroid Interferon wouldn't make it worse. Yes I have had appointment with her and am under guys care as well as local hospital

Guys are one of the best in world for MPNs

. (I am taking hydroxicarbamide. Every other day. Low dose . Platetas just under 600 which is fine with me .

Also have hashimoto .

[jodary in reply to Mostew]

I would be happy with that dose . They want me on 2 a day now and I’m not happy with that . Is your thyroid stable ? Because mine isn’t and now they will only test tsh . My argument is that regardless of whether your tsh changes they will still do nothing if it’s still in their range even if it goes from one end of the range to the other .

[jodary in reply to Mostew]

Did you consider Inteferon ?

[Mostew in reply to jodary]

Have a look at my recent posts re meds.Recommended starting on hydroxicarbamide. Looked at options.All have negatives . So

At moment staying with what's working reasonably..