Advice need before I see an Endocrinologist

[Baggieswidow]

I had my thyroid removed in 2014 due to a goitre which got too big to be treated in any other way. Ever since the operation my Tsh has been suppressed but my T3 and T4 levels have always been low even while on 125 of Levothyroxine. Within 3 months I put 21/2 stone on in weight and got really depressed. 3 months later I was prescribed Liothyroine (10) and I gradually managed to lose the weight however last September I was told I couldn’t have the Liothyroine anymore due to the cost and it was stopped. I was on 150 of Levo at the time, my Tsh became even more suppressed while my T3 and T4 were still very low. I eventually got to see an Endo at the end of January he reduced my Levo to 100 and had a short synaptic test and pituitary function carried out at the end of Feb. I have now put on 3 stone in weight, I am so fed up, my memory is rubbish and I am so tired it’s ridiculous also my skin is dry and I’m cold. Things seem even worse because I have fibromyalgia, chronic pain syndrome from a knee op that went wrong in 2005, I also have arthritis and sleep apnea (which is under control with a cpat machine), I also had both hands operated on for carpel tunnel late last year. I take several pain meds, antidepressants and Ropinirole for restless legs. My doctor has now contacted the Endo and got me an appointment for Tuesday, what should I ask at the appointment because at the moment I don’t trust my self to deal with it properly?

[shaws Administrator]

Re your withdrawal of T3. You should make an appointment with your local MP and tell him its been withdraw. This is a link as TUK and other thyroid support groups met with Lord Hunt and all of the Lords were shocked that T3 had been removed. Also if you're not a member of Thyroiduk you could join as 'the more the merrier'.

thyroiduk.org.uk/tuk/campai...

The Scottish Parliament has agreed to fund thyroid hormones that suit the person, be it T3, NDT or levothyroxine.

[Greekchick]

Dear Baggieswidow,

You have a lot on your plate and it is good that you are finally getting to see an endo.

It is unclear whether or not you were feeling better before they took you off the T3. Was your bloodwork normal before that and did you feel OK?

If not, one question I would ask is whether or not your other meds might be interfering with the absorption of your thyroid meds. Also, some antidepressants can cause weight gain. Were you on these before and were you able to lose weight?

If the T3 was working for you, I would insist that it be resumed. I would also ask to get more frequent blood monitoring given your symptoms if you do not begin to feel better once the endo has come up with a treatment plan for you.

Although this is not a question to ask the doctor, do you have a family member or close friend who can go with you to your appointment? I just had a TT 4 weeks ago, and it helped me greatly to have someone with me to listen to what the doctor was saying, because I couldn’t remember it all and there is a limit to how many notes you can take. Since you feel so fatigued and unwell, it may be useful to have a second set of ears. Also, if you forget to tell the doctor something, they can remind you. Write down what you want to ask the doctor beforehand- that also helps.

I am not sure how helpful my advice is, but I am sending you good thoughts and wish you the best of luck with your appointment. I hope you get some relief soon.

[m7-cola in reply to Greekchick]

I like to write a summary of my signs, symptoms, and questions. I give a copy to the medic which serves to focus their mind and is a useful reminder for me.

[Baggieswidow]

Thank you for your responses, I have been on antidepressants for a long time because of the fibromyalgia and I was taking them when I was on the T3 and lost the weight. My blood results were better but my Tsh was still suppressed.

[pennyannie]

Hello Baggieswidow

Just as a point of reference a fully functioning thyroid would be supporting you daily with approximately 100 T4 and 10 T3.

It just seems sensible to me that if you have had a medical intervention and your thyroid ablated or removed both these vital hormones should be on your prescription pad.

Some people can get by on T4 only, some people stop converting the T4 to T3 at some point in time, and some people simple need both these hormones dosed and monitored independently so that they are balanced and both in the upper quadrants of their relevant ranges.

Have any blood tests been arranged prior to this Tuesday appointment ?

If so, please post results and ranges, so people better able than me can give you some help and pointers prior to the appointment.

A full thyroid panel would make sense along with ferritin, folate B12 and vitamin D, as if these vitamins and minerals are not optimal, thyroid hormone replacement will not work.

There is a very good book about all things thyroid, and since we now don't have this major gland to rely on, we need to know what it does and compensate, as best as we can.

Your Thyroid and How to keep it Healthy by Dr Barry Durrant Peatfield - this doctor has hypothyroidism, it's a relatively easy read and full of information, help and advice.

[SlowDragon Administrator]

Woukd strongly recommend you take a supportive friend or family member along with you. Many people find the consultation goes much better with a witness

If your symptoms were better controlled on T3 you should have this reinstated

Ask endocrinologist to test vitamin D, folate, ferritin and B12, as well as TSH, FT3 and FT4 obviously

Low vitamins are especially common after T3 is withdrawn

TSH is an unreliable means of measuring treatment for anyone on Thyroid replacement

Most important is FT3 level, followed by FT4 to lesser extent

Fibromyalgia is often linked to low FT3

BTA statement on T3

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Recent debates in parliament

theyworkforyou.com/search/?...

Roughly where in the UK are you?

Some CCG areas are more difficult than others for getting T3 on NHS

[MissGrace]

Your endo told you that you couldn’t have the T3 because of the cost? That is against the guidelines - they can’t just take it away and make you ill for cost reasons! Complain! Loudly! If you still have symptoms despite being on what seems like an adequate amount of T4 an endo can give you a trial of T3. And that’s why you were put on it in the first place!

Complain to PALS, your MP, the endo’s boss, the media - everyone!

The guidelines are here:

sps.nhs.uk/wp-content/uploa...

Arm yourself with the info you need and be prepared for a fight. There are people on here in your position who have won and kept their T3 or had it reinstated. What does your GP think of its withdrawal? Is the GP prepared to represent your issues with monotherapy to the endo as they have referred you?

I hate hearing these stories, it’s so unfair to withdraw such an essential medication that some people cannot manage without.

Good luck! 🤸🏿‍♀️🥛 #fightforyourthyroid

[Baggieswidow]

My doctor is really angry about the whole thing that’s why he has managed to get me the appointment otherwise I would have had to wait until the 30th April for the results from the tests. I told him it was unacceptable and would have paid (which he said was unfair) I can’t carry on like this, everyday I feel worse! Am I in my rights to ask for a print out of the results from the Short Synap tests and other blood tests they did?

[MissGrace in reply to Baggieswidow]

You have the right to see and have copies of all your test results. 🤸🏿‍♀️🥛

[Baggieswidow]

At last I have got a result! I saw the endo today and my test results showed my pituitary and adrenal glands were working fine but my thyroid results showed my Tsh had come up just into acceptable, the same with my T4 but my T3 was low. The consultant will now write a letter for the doctor to send to the medical board, I just hope they hurry up now as I just feel dreadful. He has said to continue on 100 of levothyroxine and have 10 of Liothyroine. The annoying thing as well is that my tests were done after I had taken my Levothyroxine and its only since looking at your site that I knew know I should not have taken it, I did ask and was told to take it as normal.....